The Briefing Room

General Category => Health/Education => Topic started by: Mod1 on April 09, 2019, 02:50:05 pm

Title: Share your cancer journey - and any other personal medical advice
Post by: Mod1 on April 09, 2019, 02:50:05 pm
Inspired by comments on Sneakypete's thread about recent/ongoing personal health issues and the suggestion that the forum have a place for people to share their cancer battles, medical advice, helpful information, etc., this thread has been created.

Here is a link to Pete's thread (http://www.gopbriefingroom.com/index.php/topic,344993.0.html).

If your experience can help another TBR member, it's all worth it. You don't have to limit the conversation to cancer, although that certainly is one that touches all of us.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Victoria33 on April 09, 2019, 03:14:53 pm
bookmark
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Applewood on April 09, 2019, 04:16:23 pm
So far I have nothing to contribute except for my prayers for @sneakypete @To-Whose-Benefit? and anyone else facing cancer or any other serious, life-threatening illness. 

Thank you @Mod1

Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mountaineer on April 09, 2019, 05:08:06 pm
My mother's chronic lymphatic leukemia contributed to her death,  but otherwise cancer hasn't hit me directly.  My own issues include chronic pain, probably osteoarthritis related.  The Regenexx procedure done on my hip in December seems to be helping somewhat.  For more info,  visit www.rapsmd.com (http://www.rapsmd.com). That's the Pittsburgh location,  but I believe it's available all over the place.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Jazzhead on April 09, 2019, 05:17:33 pm
Watch where you're going.   Don't be careless on stairs.   Avoiding falls is probably the key to having a good quality of life in older age.   
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sanguine on April 09, 2019, 05:40:43 pm
BKMK
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on April 09, 2019, 06:14:51 pm
Was diagnosed with Prostate cancer (intermediate level), last fall. Underwent daily  external beam radiation treatment January 16-March 19 (44 treatments).


The worst stuff is performed by the urologist. The radiation-oncology stuff is painleess.

Appoinment followup with radiation-oncologist this Thursday. I expect either him or the urologist will get my PSA blood test again, to learn if treatment worked.

Supposedly radiation is 90+ percent effective. Stated differently, they predict you will eventually die from something other than prostate cancer.

Assuming successful cancer treatment outcome, my remaining situation will be lifelong rare NPH (Normal Pressure Hydrocephalus-shunt etc.) Separate story if interested.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mystery-ak on April 09, 2019, 06:18:14 pm
Was diagnosed with Prostate cancer (intermediate level), last fall. Underwent daily  external beam radiation treatment January 16-March 19 (44 treatments).


The worst stuff is performed by the urologist. The radiation-oncology stuff is painleess.

Appoinment followup with radiation-oncologist this Thursday. I expect either him or the urologist will get my PSA blood test again, to learn if treatment worked.

Supposedly radiation is 90+ percent effective. Stated differently, they predict you will eventually die from something other than prostate cancer.

Assuming successful cancer treatment outcome, my remaining situation will be lifelong rare NPH (Normal Pressure Hydrocephalus-shunt etc.) Separate story if interested.

Prayers for a good report Thursday.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Idiot on April 09, 2019, 06:20:53 pm
Was diagnosed with Prostate cancer (intermediate level), last fall. Underwent daily  external beam radiation treatment January 16-March 19 (44 treatments).


The worst stuff is performed by the urologist. The radiation-oncology stuff is painleess.

Appoinment followup with radiation-oncologist this Thursday. I expect either him or the urologist will get my PSA blood test again, to learn if treatment worked.

Supposedly radiation is 90+ percent effective. Stated differently, they predict you will eventually die from something other than prostate cancer.

Assuming successful cancer treatment outcome, my remaining situation will be lifelong rare NPH (Normal Pressure Hydrocephalus-shunt etc.) Separate story if interested.
May God grant you great test results!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on April 09, 2019, 06:48:31 pm
Prayers for a good report Thursday.
Thanks a lot !!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Applewood on April 09, 2019, 07:02:20 pm
Prayers up fo you @truth_seeker   
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on April 09, 2019, 07:10:31 pm
Prayers up fo you @truth_seeker

Thanks. I am as usual positive and optimistic.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Gefn on April 09, 2019, 07:45:34 pm
Prayers for a good report Thursday.

@truth_seeker you are in my prayers too.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on April 09, 2019, 07:53:35 pm
@truth_seeker you are in my prayers too.

Thank you!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: TomSea on April 09, 2019, 08:36:33 pm
Yes, in my thoughts and prayers....
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mountaineer on April 09, 2019, 11:22:49 pm
Watch where you're going.   Don't be careless on stairs.   Avoiding falls is probably the key to having a good quality of life in older age.
My mother suffered an incredible and indescribable amount of pain from osteoarthritis throughout her body. She was prescribed Fentanyl (patch) that didn't begin to put a dent in the pain. I have a feeling the opioid drug may have made her even more unsteady on her feet, however, which led to her falling down a flight of stairs. She died two months later, never having gotten out of the rehab hospital. The CLL may have contributed to her death by making her weaker, overall, but I believe it was a fall that caused her demise.

So I agree with you!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on April 10, 2019, 07:58:53 am
Watch where you're going.   Don't be careless on stairs.   Avoiding falls is probably the key to having a good quality of life in older age.

@Jazzhead

This is a righteous 2cents worth. Avoiding falls can save patients all Kinds of problems. 

You don't just wait cancer out.

You Fight it out.

Stand, like a Fighter! (Pics of Olympic Boxers)

Your feet spread shoulder wide, One foot out Ahead of the other.

This makes it Much harder to lose your balance and get Knocked Over.

(Especially good advice for the ladies, who've never developed a love for fist fighting! Try it for doing dishes or brushing your teeth. )
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on April 10, 2019, 08:05:20 am
@truth_seeker

Prayers up Bud.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on April 10, 2019, 02:11:49 pm
@truth_seeker

Prayers up Bud.
Thanks. Same for you.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mystery-ak on April 11, 2019, 11:15:33 pm
Thanks. Same for you.

@truth_seeker without being too nosy how did it go today?
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on April 12, 2019, 01:41:59 am
@truth_seeker without being too nosy how did it go today?

Following 44 radiation treatments, today was the first check up. Radiology/Oncologist Dr. today said get a PSA blood test and go back to him in 3 months.

The side effects during treatment were minimal. I'm optimistic.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mystery-ak on April 12, 2019, 01:46:03 am
Following 44 radiation treatments, today was the first check up. Radiology/Oncologist Dr. today said get a PSA blood test and go back to him in 3 months.

The side effects during treatment were minimal. I'm optimistic.

Sounds very promising.....keeping you in my prayers too....
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on April 12, 2019, 02:43:05 am
Sounds very promising.....keeping you in my prayers too....

Thanks a lot.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on April 12, 2019, 09:35:02 am
Thanks. I am as usual positive and optimistic.
Quack Cures

Nothing Worse or more disparaging.

And there's No Lack of the duced things.

If you're in a corner, Do Not Cut Off your Dr. In order to try one.

Try another Dr 1st. Transfer All of you records orders, current history.

But Before even that, Look Up the idea of 3 dozen strawberry enemas a day with Dr moves a round a lot, with 'Quack Watch' fly by night. IF, his uh, novel 'treatmeant' hasn't been Shellacked yet, then, try looking further


You might not even Have cancer and die in 10 years of old age checking them out!

There's that many of them out there

Also check out the wiki page on cancer treameants for cancer that were never proven to work.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sighlass on April 12, 2019, 11:21:07 am
@truth_seeker

Sorry to hear about your battles with this ... Prayers for you (and yours)...
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on April 12, 2019, 02:05:17 pm
@truth_seeker

Sorry to hear about your battles with this ... Prayers for you (and yours)...

Thank you.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on April 12, 2019, 02:31:08 pm
Went for the 6 months follow up for my brain surgery recently and learned that the MRI showed the tumor was all gone and no need to see the surgeon again until next year. No cancer involved.

My only ongoing issue is lack of feeling in my right hand due to being tied down on it for 12 hours during the surgery.

Praying for @truth_seeker @To-Whose-Benefit? @Applewood and @sneakypete
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sanguine on April 12, 2019, 02:40:28 pm
Went for the 6 months follow up for my brain surgery recently and learned that the MRI showed the tumor was all gone and no need to see the surgeon again until next year. No cancer involved.

My only ongoing issue is lack of feeling in my right hand due to being tied down on it for 12 hours during the surgery.

Praying for @truth_seeker @To-Whose-Benefit? @Applewood and @sneakypete

That's great, Bigun.  Gotta be a great relief!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on April 12, 2019, 02:40:54 pm
Went for the 6 months follow up for my brain surgery recently and learned that the MRI showed the tumor was all gone and no need to see the surgeon again until next year. No cancer involved.

My only ongoing issue is lack of feeling in my right hand due to being tied down on it for 12 hours during the surgery.

Praying for @truth_seeker @To-Whose-Benefit? @Applewood and @sneakypete

@Bigun

Seems to me you have BIG-TIME reasons to celebrate!

Congratulations!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Gefn on April 12, 2019, 02:49:46 pm
Yay @Bigun 
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on April 12, 2019, 02:57:03 pm
@Bigun

Seems to me you have BIG-TIME reasons to celebrate!

Congratulations!

@sneakypete

You betcha! 

Thanks!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on April 12, 2019, 02:58:27 pm
Yay @Bigun

@Freya

 :grouphug:
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on April 12, 2019, 08:59:40 pm
Thanks @Bigun , @Sanguine @Freya and a whole big passle of others out there.

I was out/in for a biopsy this AM. SINCE, this stuff inside Me managed to Kill the last two chemo drugs we set on them rather than the other way around,. . . . .

The think is Maybe it mutated to a diff cancer from the prostate it started as and We got us the perfect mix in a jug already, right on the Shelf for That one!
Means a lot.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on April 14, 2019, 03:50:23 am
Since I was never asleep during Friday's biopsy, I noted both Docs doing it getting excited.

Theytold me my lymph sys is badly infected with cancer. My legs have been inflated like This at least 4 or 5 times over the last 30 years, and then come down again.

So, either Sombodie's guessing wrong, or I may be something New to the mix!

They asked me afterward if I had ever had cancer before, and my swelling is going down.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on April 14, 2019, 04:17:47 am
Since I was never asleep during Friday's biopsy, I noted both Docs doing it getting excited.

Theytold me my lymph sys is badly infected with cancer. My legs have been inflated like This at least 4 or 5 times over the last 30 years, and then come down again.

So, either Sombodie's guessing wrong, or I may be something New to the mix!

They asked me afterward if I had ever had cancer before, and my swelling is going down.

@To-Whose-Benefit?

I ain't no doctor and don't even play one on teebee,but you just described the symptoms of lymphoma . How do I know this? I know it because it is the type of cancer that I have. In my case,it was in my groin (swelling my legs),my stomach (bloating my stomach and making it hard to breathe because of the pressure on my lungs and diaphram),and in my chest (causing me to have 2 quarts of water drained from my right lung every 5 or 6 days while trying to get this all sorted out).
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on April 14, 2019, 06:15:37 am
Thanks @sneakypete

Mebbe effin we git enough lay persons diagnosing here we can at least get That part of it settled and go settle That rodent with the right Ace Hardware Cure and move on toward the happy conclusion!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on April 14, 2019, 08:12:02 am
That's great, Bigun.  Gotta be a great relief!

Eyup.

Ain't no other way to purt it.

Getting all them Other purts of us workin again, as issued, is about the greatest gift imaginable.

To each and every one of you needing a new cog. 

"Save All Your Paperwork!"

and best of luck.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 08, 2019, 08:10:08 pm
Save ALl your pprwrk.
K
And ppn
Nwrk. Hspbilling pprwrwrk..

Great News. Find out What it is and mail it w a a bbsbe bat.let me know What you got
Let me know. I want mine Daed.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 08, 2019, 09:50:43 pm
May God grant you great test results!

Brother I Hope you never get poisoned with chemo.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Gefn on May 08, 2019, 10:06:42 pm
Everyone here is in my thoughts. Bless you all.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on May 09, 2019, 12:39:46 am
Prayers up for all fighting the big 'C'.

My tussle with it consisted of figuring out I had a nickel-sized basal cell carcinoma, going to the doctor and getting that confirmed, then while the oil company was picking up a different rig and moving it in, getting the tumor cut out. The surgeon and path lab did frozen sections until the margins were clear of cancer, and sewed me up. I got the stitches out the day before we hit start depth, and went back to work. I got a 4" scar to add to my humble collection, and no chemo or radiation. That was six years ago, and no sign of a recurrence, so I was lucky.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 11, 2019, 07:00:10 am
@Smokin Joe

Well now if That don't just light up my Smiles. You Beat the dirty Alley Bashing SOB, WHILE, other folks was walking in Sideways to bushwack Another nice little tote bag of gold coin for you to pick up!

 :beer:
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on May 11, 2019, 07:08:23 am
@Smokin Joe

Well now if That don't just light up my Smiles. You Beat the dirty Alley Bashing SOB, WHILE, other folks was walking in Sideways to bushwack Another nice little tote bag of gold coin for you to pick up!

 :beer:
Brother, The Almighty beat it, with a little help from the surgeon. Me? I just didn't have time to mess with it, so I told the surgeon, not to worry about a scar (hairline to jawline, it hides in the edge of my beard, now). Just make sure you get it all.
He did well. :beer:
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 11, 2019, 07:10:19 am
@Smokin Joe

Know anything 'bout the discolored tissue abutting lymph nodes that @Sighlass is talking about Joe? Sounds like what I've hade for at least 25 years. Docs dunno so they all wanna put me in in freaking Hospice and write us us both off as incurable cancer patients. ???
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on May 11, 2019, 07:51:58 am
@Smokin Joe

Know anything 'bout the discolored tissue abutting lymph nodes that @Sighlass is talking about Joe? Sounds like what I've hade for at least 25 years. Docs dunno so they all wanna put me in in freaking Hospice and write us us both off as incurable cancer patients. ???
It's a little out of my area of expertise, but if you point me to the post (I couldn't find it on this thread), I'll find out what I can.

When the docs dunno, it may be time to see some new/different docs.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on May 11, 2019, 12:54:56 pm
GREAT news! A good friend of mine was diagnosed with throat cancer the same day I was told I have lymphoma,and his treatment has been brutal. Chemo one day a week for two weeks,and radiation 5 days a week for 3 months. Including the days he had chemo. He was told yesterday the tumor in his throat was gone. All this time he has had a tube in his throat that kept him from breathing though his nose or mouth,eating,and even talking. Had to be fed through another tube in his stomach. I am not exaggerating when I say his arms are now half the size they used to be. Besides losing muscle mass,he was close to starvation.

He now has a different type of tube in his mouth that allows him to eat small soft things for the time being,and this is big,also allows him to speak and breathe through his nose. The stomach tube is gone.

I have no doubt it will take him at least two weeks before he starts feeling stronger and is able to go back to work a few hours a day at his commercial garage,but IF he is very careful and watches what he is doing,he may be back to working all day doing small things within a month.

All this time the bills have kept coming in,and no profits being made. On top of the other monthly bills. We can only imagine what effect this had on him,but I'm sure it wasn't minor. Just knowing that he no longer has the tumor and can start thinking about going back to work instead of worrying about more surgery and more desperate treatment is going to be a HUGE part of his recovery.

Worry is always harmful to recovery from any physical ailment,but there is no way to avoid it until the doctors tell you you have a clean bill of health and will soon be able to go back to work.

He was treated at the same clinic as me,but had a different doctor and different form of cancer.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Gefn on May 11, 2019, 01:08:20 pm
Wonderful news @sneakypete  888heartkitty
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sanguine on May 11, 2019, 01:48:50 pm
That's great, @sneakypete!

I'm going to share a little bit of my experience.  Maybe it is helpful?

I was diagnosed with a particularly aggressive and out of the blue cancer at a youngish age.  Too young for what I had anyway.  Went through many surgeries, heavy-duty chemo, radiation and follow-up-for-five-years-anti-cancer meds.  That was twenty years ago.  One smallish recurrence about 10 years ago.  Lots of scars but no sign of anything else.  God is good.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on May 11, 2019, 03:24:36 pm
That's great, @sneakypete!

I'm going to share a little bit of my experience.  Maybe it is helpful?

I was diagnosed with a particularly aggressive and out of the blue cancer at a youngish age.  Too young for what I had anyway.  Went through many surgeries, heavy-duty chemo, radiation and follow-up-for-five-years-anti-cancer meds.  That was twenty years ago.  One smallish recurrence about 10 years ago.  Lots of scars but no sign of anything else.  God is good.

@Sanguine

I want to go into screaming fits every time I read or hear about someone young getting cancer. In fact,that is one of the prime reasons I can never accept that there is any such creature as a "kind and loving God".

I am glad you were able to survive,and sorry to hear you had to go through it.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on May 11, 2019, 03:37:01 pm
That's great, @sneakypete!

I'm going to share a little bit of my experience.  Maybe it is helpful?

I was diagnosed with a particularly aggressive and out of the blue cancer at a youngish age.  Too young for what I had anyway.  Went through many surgeries, heavy-duty chemo, radiation and follow-up-for-five-years-anti-cancer meds.  That was twenty years ago.  One smallish recurrence about 10 years ago.  Lots of scars but no sign of anything else.  God is good.

Wow! I never knew that.  Glad you beat it!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sanguine on May 11, 2019, 03:41:26 pm
@Sanguine

I want to go into screaming fits every time I read or hear about someone young getting cancer. In fact,that is one of the prime reasons I can never accept that there is any such creature as a "kind and loving God".

I am glad you were able to survive,and sorry to hear you had to go through it.

@sneakypete oddly, I'm not sorry to have had to go through it.  You want to find happiness and meaning in life?  Reinforce your relationship with The Great Unknown?  Understand very clearly what is important and what isn't?  Find out what you're made of?  This is one way to do it.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sanguine on May 11, 2019, 03:41:57 pm
Wow! I never knew that.  Glad you beat it!

Thanks, and me too!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Gefn on May 11, 2019, 04:30:07 pm
@Sanguine I’m so glad you beat this
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sanguine on May 11, 2019, 04:36:36 pm
@Sanguine I’m so glad you beat this

Thanks, Freya.  I'm lucky in many ways.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on May 11, 2019, 07:34:09 pm
@sneakypete oddly, I'm not sorry to have had to go through it.  You want to find happiness and meaning in life?  Reinforce your relationship with The Great Unknown?  Understand very clearly what is important and what isn't?  Find out what you're made of?  This is one way to do it.

@Sanguine

No question about that,but there are less painful ways to go about it.

I'm just glad you are here to write about it.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sanguine on May 12, 2019, 02:09:00 am
@Sanguine

No question about that,but there are less painful ways to go about it.

I'm just glad you are here to write about it.

@sneakypete, some of us have to be hit over the head with a 2x4 before we pay attention.  I'm not sure I'm one of those people, but my attention was definitely gotten.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 12, 2019, 10:36:32 pm
Get hit with it, and it will seem like more than a 2 x 4.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 13, 2019, 05:48:44 am
My Lymph Nodes are a twisted mess. When I had a Biopsy done this Feb for Prostate Cancer it was done topically (shaved slices of skin off the outside of the body) in the armpit and came back Positive.

Now a Similar condition with my Lymph Nodes has dogged me for 30 years, always with NO real diagnosis But the condition reverses itself and does Not become actually Cancerous.

THIS time, an Oncologist diagnosed me as having Stage 4 Castration Resistant Metastatic Prostate Cancer.

I remained awake through my last Biopsy. My 2 Doctors doing the biopsy Asked me if I I had Ever Had Cancer Before!

I said NO!

From what I can gather I have some black/blackish material between my Lymph Nodes and the surrounding tissue.

So far, my body has Stopped 2 global chemotherapeautic agents dead in their tracks: Zytiga and Oxytaxel. My Next chemo will be Bevnan (Cabrizataxel).

My Question is, has anyone Else run into these changes in Their body? Has anyone else had a Positive Identification of the material (blackish/brown) between Their Lymphatic Cells/Organs? Has it or has it Not been Med Lab Identified as Cancerous? 

If Not, has anyone Had this odd material and it's Condition actually Med Lab Identified?

It's more than an Academic question for me because my, uh, Team of Medical All Stars could Use a Direction to Look into, as I have run out of time.

So, Thanks very much to anyone with answers or guesses, they beat all hell out of just watching my own personal clock run even Farther out of bounds.


Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on May 13, 2019, 01:38:32 pm
Quote
My Lymph Nodes are a twisted mess. 

Now a Similar condition with my Lymph Nodes has dogged me for 30 years, always with NO real diagnosis But the condition reverses itself and does Not become actually Cancerous.

@To-Whose-Benefit?

This seems to be pretty common with lymphoma. I have it in the groin,stomach,and chest. Have had it since at least the early 1990's,when I suddenly went from 165 lbs or so,to around 230 lbs,and then a few years later bumped up to around 288 lbs.  The VA docs were the only ones I could afford to go to,and they kept telling me to quit drinking,eat a healthy diet,and get more exercise. It was,of course,my fault due to poor habits. Nothing to see here,folks.

This,despite me already being diagnosed and rated BY THE VA as an Agent Orange veteran,and lymphoma being the prime killer.

Finally,a few months ago my lungs filled up with water to the point I was having to have 2 quarts of fluid drained from them every 5 or 6 days to avoid drowning on dry land,and while in the CIVILIAN hospital being diagnosed with an irregular heartbeat (24 beats per minute) that lead first to a stent being put in,and a couple of weeks later having a pacemaker put in. It was while I was in the hospital after the stent surgery and on a monitor that the heart surgeon noticed my procedures every few days to have my lung drained,and figured out I have lymphoma. Being a heart surgeon he wasn't qualified to make this diagnosis,but what he did was come to me and tell me he had a female doctor that was going to come and see me the next day,and to make sure to NOT leave the hospital until after she talked with me. Evidentially he shared some records with her because when she showed up at 7 AM the next morning she was ready to hit the ground running. She told me what I had and what she thought I needed to do about it,and had already made me an appointment to her clinic a few days later.

How this relates to you is the fact that it seems common for lymph gland cancer to live in your body and cause you problems for years while still remaining benign.

BUT......,when it turns malignant it means business because it is already well-rooted and has a head start with most people. I am only half-way though my initial treatment program,but so far I seem to have been one of the VERY lucky ones that caught it in time for the meds to really work well. IF everything continues to go well,it will be early August before my treatment is done. If it doesn't continue to go well,who knows how long it will continue? The surgeon ruled out a transplant right off the bat due to my age.

I am not a doctor and don't play one on teebee,but I think you need to contact a cancer clinic that has multiple doctors and offices. In other words,one big enough and professional enough to have a whole damn herd of cancer surgeons that can put their heads together at clinic meetings and discuss successful and unsuccessful treatments with each other.

This stuff is just too "big" at the stage you are to trust to a small practice .

Quote
THIS time, an Oncologist diagnosed me as having Stage 4 Castration Resistant Metastatic Prostate Cancer.

Which,PLEASE NOTE,is NOT the form of cancer that I have,but it seems you also have lymph gland problems,so make DAMN SURE you get that checked out,also, Just because you may now have prostate cancer,doesn't mean you can't also have lymphoma.

Or some other diagnosed form of cancer that is making the primary cancer you are being treated for harder to treat.

 
Quote
I remained awake through my last Biopsy. My 2 Doctors doing the biopsy Asked me if I I had Ever Had Cancer Before!

I said NO!

Rookie mistake. You NEVER answer a question like when asked by doctors with the word "NO!". You ain't filling out an insurance policy application. You are a patient with medical problems,and the doctors have reasons to ask this of you or they wouldn't have asked it. In cases like this the answer should ALWAYS be some form of "Not as far as I know,but I guess it is possible."

These people are clinic docs. When someone gives them a definitive "No",due to their professional experiences,tend to THINK that this means you have been tested in the recent past and diagnosed as being cancer-free. Make sure you clear up any little misunderstanding like that at the start by NEVER giving a straight,unadorned "No" answer to such an important question. Remember,for all these guys know,you were given a clean bill of health by the Mayo Clinic a month ago. They know NOTHING about your medical treatment in the past that you don't tell them.

Quote
From what I can gather I have some black/blackish material between my Lymph Nodes and the surrounding tissue.

I don't even have a clue about this,but would suggest that maybe you do a google search using your symptoms as key words,and then look for discussion groups that have cancers that may be related. You may not find the perfect answer at a discussion group,but it is likely you can find an answer that will give you an idea about what questions you need to ask your surgeons.


Quote
So far, my body has Stopped 2 global chemotherapeautic agents dead in their tracks: Zytiga and Oxytaxel. My Next chemo will be Bevnan (Cabrizataxel).

I don't understand that. MY understanding,and I CAN be wrong,is that these days they tailor-make patient-specific chemo blends for each patient,so how can your system be rejecting it?

This is WHY they tailor-make patient-specific and cancer-specific chemo brews.

 
Quote
If Not, has anyone Had this odd material and it's Condition actually Med Lab Identified?

I didn't see it,but I was later told by the surgeon that I was leaking black pus from my scrotum when I got to the ER with flesh-eating bacteria. Scared them so badly they burned all my clothes. They never named it,though. Said it smelled "like a open grave" and scared them.

Quote
It's more than an Academic question for me because my, uh, Team of Medical All Stars could Use a Direction to Look into, as I have run out of time.

IMHO,you need a new All Star team. See if you can get a consult appointment with the Mayo Clinic or some other major clinic. Get copies of all your lab reports and doctors reports and make copies of them to mail out or fax. Call the major hospitals in your state that have cancer centers and see if you can get them interested. Once again,have data to fax or mail to them immediately.

Get proactive on a state-wide level while trying to work major US cancer centers in the background. You can find them by doing a web search for "major cancer research hospitals".

Do this TODAY!

 
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 13, 2019, 02:02:57 pm
Morning Pete.

Last Week (thanks to the 2nd chemo) I wound up down on one knee unable to stand without help. (1st time in over 50 years.)

10 days later I get Another HHA worker. Out of the blue. Wants to do a Speech Apptitude test.

Within 3 words I threw her out.

The 9 scariest words in the English Language?

"We're from the Govt and we're here to help."
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: jafo2010 on May 13, 2019, 04:49:36 pm
I noticed this thread, read through it, and thought I would contribute some lessons learned in my life.

1993 I was a Financial Planner, investments and insurance, etc, and I scheduled an appointment with a couple that were referred to me.  Met them at their house where when I first sat down with them the husband said, 'don't know who you are, don't care, just get the f out of my house.  I scheduled the appointment with the wife. 

His name was Al, and one month prior to meeting him, he was reaching for a glass out of the cubboard and snapped a bone in his arm.  He was diagnosed with two forms of terminal cancer, multiple myeloma, and the end stage of prostate cancer.  Doctors gave him 2-3 months to live.  They immediately started him on Chemo.

Al was a tough minded business man, so he started doing his own research.  He discovered that using mega doses of shark cartilage had an impact on 60% of those with soft tissue cancer.  So, he started the program.  In a very short period of time, his prostate cancer went away, and his multiple myeloma went into full remission.

Al lived 5.5 years longer, living a normal life, running his business, playing golf, etc, and when he died, it was due to a terrible fall he took which shattered his pelvis in multiple places.  During those years, he and his wife became like a second set of parents and close friends.  I dined with them regularly, and learned a great deal from him.  He had a major influence on me and my mindset regarding cancer.  And BTW, his oncologist would refer his patients to Al to explain the benefits of the cartilage.  His doctor could not EVER mention cartilage because it is not a recognized therapy by the AMA.  His doctor admitted it was the cartilage and not the chemo or radiation that worked on Al.

It was about three years after I met him that my own father was diagnosed with lung cancer.  When I first learned his condition, I told him, at Al's insistence about the shark cartilage, but my parents were the type of people that if the doctor did not tell them to do it, they ignored the advice.  So my father went through chemo and radiation, and six months later was given a clean bill of health from the good doctors.

Six months later, he developed a metastasized tumor in his esophogus.  He could no longer swallow food, not even his saliva without choking.  Doctors inserted a feeding tube in his abdomen, and they told him he had 2-3 months to live, that he was maxed out on chemo and radiation, and offered NOTHING therapeutically for my father.  They said, get your affairs in order, there is nothing we can do.

I then sat down with my parents, and I asked my father, do you want to live?  Of course he looked at me like I was an idiot, but he responded, absolutely.  So I said, are you ready to listen to me now?  He said, what do you want me to do?  I said, take the shark cartilage.  So, he agreed to do it.

My father lived two years taking the shark cartilage.  And then he stopped one day, because while he could not swallow, from his incessant coughing, he would regurgitate the content of his stomach, and he did not like the then fishy taste of the cartilage, so he stopped taking it.  My father was as finicky a person as I ever knew.  He would not eat guaccamoli because of the color, etc

In one month a tumor popped out on his leg, and doctors surgically removed it.  In one more month he was dead.  The cartilage halted the grow of the tumor in his esophogus and allowed him to continue to live his life.  And he did maintain a relatively normal life.  He was a rabid Steeler fan, and he and his best friend went to every home game.  The two of them and the wives were also rabid bridge players, playing bridge every week for roughly 35+ years of their lives together.  And of course, he got to enjoy his family, for we all at the time lived within 3 miles of one another.

Bottomline, I could go through a dozen case studies of people that I encouraged to take shark cartilage.  In every case, it was after there was no hope left from doctors and conventional medicine, and in every case, their lives were prolonged by years!

If you go online, you will see a number of articles that say it is all bullsh*t.  It is not.  Both my mother and mother-in-law benefited from the shark cartilage.  Both were survivors of prior bouts of cancer, both turning up with breast cancer, again!  In my mother's case, the doctor told her the chemo and radiaiton was not helping to shrink her tumor.  She also had breast cancer on her cleavage.

Now my mother was worse than my father about doing only what the doctor said, so it was not until he said his therapies were not working and my sister nagged her for hours each day that she relented.  She took the cartilage, and the cancer on her cleavage went away in one month.  When she went to the doctor, he all but fell out of his shoes in shock, according to her.  He said her tumor was shrinking, and she never mentioned she was using shark cartilage to him.  She was progressing to be free of cancer when she too took a tumble down a staircase, cracked her head open and died the next day.

So, not to bore all of you to death, there is a lot to know about cartilage and other things that greatly benefit those with cancer that doctors will never tell you.  Rather than bore you to death, I am happy to discuss what I know with anyone interested in talking further.  And by the way, my mother-in-law was a physician, a pathologist, and her life was prolonged two years as well.

Feel free to contact me.  My email is medpgh@gmail.com
And note, I am not selling anything, but I am always happy to help others, particularly against one of the ugliest diseases I know.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 15, 2019, 02:27:24 pm
What to expect.

Last week I went down on one knee in the kitchen, it wasn't a Fall but down on one knee and a cane without the strength to haul myself back up.

Against better advice I let someone call an Ambulance and take me to a hospital.

Once there I was put in an Anti Fall Unit, assigned a boundary buzzer bead, and given Crap crap ever time I Tried to go to to to the can (with a bad prostate to boot, every 20 minunets. "Don"t Do That!"

And as a suspected Sedative Seeker, ignored for pain meds. (Hell of a way to fight cancer.)

Anyway, hardly the 1st time I been treated like shit by a hospital. Ignored and left unwashed for 48 hrs in a wet Hsp bed.

With an open streak of Stinking racial animus


And Currently dealing with a possible broken shoulder from an over zealous ambulance crew.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 15, 2019, 08:39:40 pm
Anyone got 2 cents here?
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: berdie on May 15, 2019, 10:44:20 pm
Anyone got 2 cents here?



For my 2 cents...I think you are a tough hombre that will over come this.  In spite of it all.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Gefn on May 15, 2019, 10:59:37 pm


For my 2 cents...I think you are a tough hombre that will over come this.  In spite of it all.

He is! I’m up visiting him and just gave him a much needed pedicure. ❤️🐱
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 15, 2019, 10:59:44 pm

Hey @berdie

Thanks. Worst case is I die in the stinking Communist CT Hamlet I was dropped in, and be Buried there till the jackass town at Some point finds yet Another moronic penny grubbing excuse to invoke emminent domain, Again.


For my 2 cents...I think you are a tough hombre that will over come this.  In spite of it all.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mountaineer on May 15, 2019, 11:26:15 pm
Very interesting and potentially helpful into about the shark cartilage, @jafo2010   Thanks.
btw, I'm also a yinzer!  :beer: (those are tiny IC lights, which I'd never drink but seem to exemplify da Burgh).
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 16, 2019, 01:26:15 am
 Hallmarks of Socialized Medicine; Racism/Class Warfare. All Free/All Equal/in this case, intake processing cubicles at street level on a wind protected Ally. So They sit outside as the sun falls and launch Marxist Insults in through the back windows, which of course upset the license holding Workers who, while sympathetic, have a real Check, and are despised for it.

So who do They take it out on?

You Betchum.

I got Stage 4 paperwork and DEA controlled meds to be ignored, . . .
 .

A Real Workers Paradise.



Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 16, 2019, 01:43:23 am
He is! I’m up visiting him and just gave him a much needed pedicure. ❤️🐱

Hahaha.

If the. nails had gone any longer they would have qualified in a Vampire Flick for some grisly trimming scene.

I'm only surprised they didn't bleed as it was.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: LegalAmerican on May 16, 2019, 01:59:28 am
Thanks. Same for you.

No radiated pellets implanted?  More direct.pin pointed.   Best wishes . 

I had chemo & radiation.  I would NEVER do radiation again
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 16, 2019, 02:43:37 am
No radiated pellets implanted?  More direct.pin pointed.   Best wishes . 

I had chemo & radiation.  I would NEVER do radiation again


Sounds like my last go round with chemo.

Before This Crap, I had no trouble squatting a lousy 225lbs. Radiologist said hang it up you risking a bone/joint fracture.

Two weeks ago I couldn't hoist a lousy 210lbs/my own carcass weight on just ONE KNEE.

I Watched the chemo burn my muscles Off like napalm. Loose chunks of them!

Unfortunately it's Got to be chemo now (stage 4) to get At the Mets.

Radiation will at best give you a Precision Game of Whack a Mole. ( And hope you don't Miss any of them).
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on May 16, 2019, 03:23:45 am
No radiated pellets implanted?  More direct.pin pointed.   Best wishes . 

I had chemo & radiation.  I would NEVER do radiation again

I did 44 daily radiation treatments. Pretty standard I understand. About July 1st I do a PSA blood test. Then visit the oncologist, to learn if the radiation got all or most of it.


Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on May 16, 2019, 03:34:55 am
I did 44 daily radiation treatments. Pretty standard I understand. About July 1st I do a PSA blod test. Then visit the oncologist, to learn if the radiation got all or most of it.

@truth_seeker

Here is hoping it works out for you as well as it did for my friend. He had radiation treatment 5 days a week for 9 weeks,plus a few weeks of once a week chemo,and when he went for his appraisal last Friday I was dreading the phone call from his wife because I just KNEW he was dying and there wasn't a thing they could do to stop it. His arms were less than half the size they had been before he got sick,and they were never big to start with.

Damned if they didn't tell him the tumor was gone!

You can never really tell by looking.

Yeah,he is still as weak as a kitten and most likely has several months to slowly and carefully try to build his strength back up before he is half of what he was,but the point is HE WILL BE HERE TO SLOWLY BUILD HIS STRENGTH BACK UP.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 16, 2019, 04:02:48 am
Can't say exactly How @truth_seeker feels though I Expect, .  . . . We 're Both Real Appreciative of all the prayers and such are received on Both of our behalfs.

Ain't NO amount of money worth a beautiful sunrise with a beautiful lady. More the merrier, and only One place I Know to get them.

So @truth_seeker I'm setting up my God Box, and hoping there'll be Plenty of Kind Reminders in there for all of our Buddies here.

But why God, and not just science?

Count up all those years.

Too many other variables.

Not being a Scripture Hound I can tell you all, I Want to believe. But I can't tell you what Else I believe.

And I'd like to see all you Others who Want To Believe, get to Take that Journey.

Because Taking the Journey itself is the real prize. Not Holding the Deed, but taking the Trip!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sighlass on May 16, 2019, 06:43:47 am
@Smokin Joe

Know anything 'bout the discolored tissue abutting lymph nodes that @Sighlass is talking about Joe? Sounds like what I've hade for at least 25 years. Docs dunno so they all wanna put me in in freaking Hospice and write us us both off as incurable cancer patients. ???

I am also at a loss here TWB... I don't know the post  you are talking about. I don't remember talking about such.... Perhaps you can set me straight if I mislead you in any way.

That said, you are in my prayers sir. I wish I could do more and offer better advice. As is, I just sit here and remember that no matter how much I ache at times, there is those here that would trade places with me in a NY minute. That my sufferings are pale and I should be more thankful for what I have.

As I said, you are remembered in prayer here.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 16, 2019, 06:28:26 pm
[quote author=mrpotatohead

More Loose Ends
Hi
Being Fired as a Patient

Yes Virginia, it happened to ME.

So chill. After 10 weeks of promisess, Mand trips across Stat





Morem0lolink=topic=357703.msg1953503#msg1953503 date=1554834053]
What to expect.

Last week I went down on one knee in the kitchen, it wasn't a Fall but down on one knee and a cane without the strength to haul myself back up.

Against better advice I let someone call an Ambulance and take me to a hospital.

Once there I was put in an Anti Fall Unit, assigned a boundary buzzer bead, and given Crap crap ever time I Tried to go to to to the can (with a bad prostate to boot, every 20 minunets. "Don"t Do That!"

And as a suspected Sedative Seeker, ignored for pain meds. (Hell of a way to fight cancer.)

Anyway, hardly the 1st time I been treated like shit by a hospital. Ignored and left unwashed for 48 hrs in a wet Hsp bed.

With an open streak of Stinking racial animus


And Currently dealing with a possible broken shoulder from an over zealous ambulance crew.
May God grant you great test results!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: To-Whose-Benefit? on May 16, 2019, 06:30:59 pm
May God grant you great test results!

Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on September 20, 2019, 06:05:15 pm
How about some updates???????
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Applewood on September 20, 2019, 07:10:26 pm
How about some updates???????

How about you first?  You were gone for a little while and I had to ask others about you.  Good to see you back, by the way. 
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on September 22, 2019, 11:31:27 pm
How about you first?  You were gone for a little while and I had to ask others about you.  Good to see you back, by the way.

@Applewood

In remission. Memory still sucks from chemo brain,but I am hoping to get more of it back before I am assigned a keeper.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Gefn on September 23, 2019, 03:58:02 am
@Applewood

In remission. Memory still sucks from chemo brain,but I am hoping to get more of it back before I am assigned a keeper.

Pete, I’m glad you are in remission. I remember a few days before he died, TWB was asking about you. You are in my thoughts, my friend.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on September 23, 2019, 05:19:22 am
Pete, I’m glad you are in remission. I remember a few days before he died, TWB was asking about you. You are in my thoughts, my friend.

@Gefn


TWB died? When did this happen?
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Applewood on September 23, 2019, 11:38:43 am
@Applewood

In remission. Memory still sucks from chemo brain,but I am hoping to get more of it back before I am assigned a keeper.

@sneakypete

So glad to see you are in remission.  Good luck with the chemo brain.  I've read it's usually temporary.  Sure hope so.  My brain cells were scrambled 11 years ago thanks to a cardiac arrest (no oxygen to the brain).  However, most of my relatives and friends say they don't notice a difference.  LOL

Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on September 23, 2019, 01:18:11 pm
@sneakypete

So glad to see you are in remission.  Good luck with the chemo brain.  I've read it's usually temporary.  Sure hope so.  My brain cells were scrambled 11 years ago thanks to a cardiac arrest (no oxygen to the brain).  However, most of my relatives and friends say they don't notice a difference.  LOL

@Applewood

Thanks for the good thoughts. I know I am getting better because I now have good memory days,and bad memory days. A month or so ago all I had were bad memory days.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mountaineer on September 23, 2019, 02:32:36 pm
Very good to hear, Pete!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: berdie on September 23, 2019, 08:02:05 pm
That's such good news @sneakypete !  You are tough!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: jafo2010 on March 13, 2020, 06:27:09 pm
It's about six months later, how are you feeling now Pete?

I don't know if I mentioned this story before on TBR before, but maybe this will help further for you or others.  In January, 1977, I was consulting to Classic Chemical in Camden, NJ, and flying Philly to Pittsburgh each week.  One Friday, I sat next to a woman, she said she was 49 years of age, and she started telling me her story.

Eighteen months prior, she was diagnosed with cancer in her vital organs in her abdomen, and told by doctors she has three months to live.  Now 15 years prior to this, she had cancer, went through chemo and radiation and given a clean bill of health.  So, again she has cancer, she made the conscience decision not to do chemo and radiation again, and decided to do the Layetril Diet(not sure of spelling).  For those of you old enough, you may remember this.  She explained it was mega doses of vitamins and minerals, restricted diet, no spicy food, no alcohol, coffee, tea or soda, and she was only allowed to drink distilled water or frozen concentrated juices with distilled water.  She also did other things too as part of the therapy.

In any case, her cancer went away completely.  She went on to say that she bought a water distiller to make her own water, and her whole family drank distilled water and found tap water offensive. 

End of 1978, I get married and move from Pittsburgh, PA, to Tampa, FL.  The water in Tampa is the worst in the country in my opinion.  Remembering what the woman above told me, I started buying distilled water off the shelf in the grocery store.  Did that for a year, bought my first house, and told my wife I am tired of lugging jugs of water from the grocery store.  Checked the yellow pages, and there was a couple listed selling distillers.  Bought one and have been drinking distilled water ever since.

I am a firm believer in drinking distilled water.  Why?  Chlorine and Flouride are extremely toxic and both are carcinogenic.
Also, municipalities add as many as 46 different chemicals to the water for treatment, which you would consume.  I consider tap water unsafe for long term living.  Look around at the people getting cancer.  It is no mystery to me why.

There is a lot to know about water, which is usually a boring subject for most.  My friend Al, who I mentioned further up the thread who used shark cartilage, I convinced him to also use only distilled water.  I believe with the many case studies I have witnessed, that distilled water helps purify the body, removing anything that does not belong. 

I believe firmly, I will never have a blocked artery, never have kidney or gall stones, never have arthritic deposits in my joints, etc.  There was a recent study published indicating that with virtually every Alzheimer patient, there was a buildup of a particular protein in the brain.  If this is true, I suspect I will never have that either.  Distilled water helps keep anything that does not belong to exit the body.  Bottomline, I believe one can extend their life ten years by drinking it.

For those that have cancer, I strongly recommend using distilled water.  If you look online, the detractors will say it leaches minerals out of the body.  Well, I have been drinking distilled water for 42 years, and I am in perfect health.  It is important to eat a balanced diet, and I also recommend taking a vitamin/mineral supplement daily.  If you have a poor diet, and eat junk, you will have a problem.  But then that is true regardless of drinking distilled water.

My closest roommate from college days was in good shape, athletic and active.  He was a sports reporter for a newspaper in Virginia, and he had chest pains at age 47 and was taken to a hospital and he died while they had him cracked open on the operating table.  He ate junk food every day for lunch, i.e. McDonalds, etc.

It is not only food that makes a difference going into your body.  Since your body is comprised of roughly 84% water, I believe the water you drink is just as important if not more so.

Title: Re: Share your cancer journey - and any other personal medical experience
Post by: DB on March 13, 2020, 06:33:21 pm
Did @To-Whose-Benefit? not make it? Hope that isn't the case.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on March 14, 2020, 04:16:16 am
It's about six months later, how are you feeling now Pete?

I don't know if I mentioned this story before on TBR before, but maybe this will help further for you or others.  In January, 1977, I was consulting to Classic Chemical in Camden, NJ, and flying Philly to Pittsburgh each week.  One Friday, I sat next to a woman, she said she was 49 years of age, and she started telling me her story.

Eighteen months prior, she was diagnosed with cancer in her vital organs in her abdomen, and told by doctors she has three months to live.  Now 15 years prior to this, she had cancer, went through chemo and radiation and given a clean bill of health.  So, again she has cancer, she made the conscience decision not to do chemo and radiation again, and decided to do the Layetril Diet(not sure of spelling).  For those of you old enough, you may remember this.  She explained it was mega doses of vitamins and minerals, restricted diet, no spicy food, no alcohol, coffee, tea or soda, and she was only allowed to drink distilled water or frozen concentrated juices with distilled water.  She also did other things too as part of the therapy.

In any case, her cancer went away completely.  She went on to say that she bought a water distiller to make her own water, and her whole family drank distilled water and found tap water offensive. 

End of 1978, I get married and move from Pittsburgh, PA, to Tampa, FL.  The water in Tampa is the worst in the country in my opinion.  Remembering what the woman above told me, I started buying distilled water off the shelf in the grocery store.  Did that for a year, bought my first house, and told my wife I am tired of lugging jugs of water from the grocery store.  Checked the yellow pages, and there was a couple listed selling distillers.  Bought one and have been drinking distilled water ever since.

I am a firm believer in drinking distilled water.  Why?  Chlorine and Flouride are extremely toxic and both are carcinogenic.
Also, municipalities add as many as 46 different chemicals to the water for treatment, which you would consume.  I consider tap water unsafe for long term living.  Look around at the people getting cancer.  It is no mystery to me why.

There is a lot to know about water, which is usually a boring subject for most.  My friend Al, who I mentioned further up the thread who used shark cartilage, I convinced him to also use only distilled water.  I believe with the many case studies I have witnessed, that distilled water helps purify the body, removing anything that does not belong. 

I believe firmly, I will never have a blocked artery, never have kidney or gall stones, never have arthritic deposits in my joints, etc.  There was a recent study published indicating that with virtually every Alzheimer patient, there was a buildup of a particular protein in the brain.  If this is true, I suspect I will never have that either.  Distilled water helps keep anything that does not belong to exit the body.  Bottomline, I believe one can extend their life ten years by drinking it.

For those that have cancer, I strongly recommend using distilled water.  If you look online, the detractors will say it leaches minerals out of the body.  Well, I have been drinking distilled water for 42 years, and I am in perfect health.  It is important to eat a balanced diet, and I also recommend taking a vitamin/mineral supplement daily.  If you have a poor diet, and eat junk, you will have a problem.  But then that is true regardless of drinking distilled water.

My closest roommate from college days was in good shape, athletic and active.  He was a sports reporter for a newspaper in Virginia, and he had chest pains at age 47 and was taken to a hospital and he died while they had him cracked open on the operating table.  He ate junk food every day for lunch, i.e. McDonalds, etc.

It is not only food that makes a difference going into your body.  Since your body is comprised of roughly 84% water, I believe the water you drink is just as important if not more so.
I have been drinking distilled water for about 20 years. Sometimes bottled water, rarely soda, no alcohol. I have found that distilled water makes the best coffee. WHile we didn't do it for health reasons at first (at least not ours) we had found that tap water from the local water plant (which comes from the Missouri River before processing) had a muddy taste in the spring despite the clean test results sent out every year. Believing that pesticides and herbicides might be present, we filtered that for a year before finally switching to distilled. Mrs. Joe and I are on no medication, have no heart or other issues, and are reasonably healthy for our mid 60s.

My tussle with cancer was limited to a nickel sized basal cell carcinoma, and that right on the cheek where I held cell phones for years, with a  few thousand hours of phone time.  (I use the speaker phone, now).
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: DB on March 14, 2020, 04:38:52 am
I would think some contaminants that have a lower boiling point than water would pass right through the distillation process.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on March 14, 2020, 05:22:41 pm
I would think some contaminants that have a lower boiling point than water would pass right through the distillation process.
Sure, but you vent those, just like distilling diesel fuel from crude oil.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: DB on March 14, 2020, 07:04:58 pm
Sure, but you vent those, just like distilling diesel fuel from crude oil.

Why wouldn't it condense with the water? (I'm not a chemistry dude...).
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on March 14, 2020, 08:29:11 pm
Why wouldn't it condense with the water? (I'm not a chemistry dude...).
It would if you didn't vent it.

If it boils off at a lower temperature, you run up to just short of boiling water, vent the vapors, and that way those lighter ends go to atmosphere (unless you have a place or reason to capture them).  Distilling alcohol, you capture (selectively) the alcohol vapors and leave the water behind. Run through that a couple of times you can get up to 90-95% (Everclear) alcohol captured.
Moonshiners do it with pretty basic equipment.

If you switched to a different condenser and continued the the distillation process, with a mite more heat, you could boil the kettle dry and condense distilled water, too, but that isn't the product that pays the bills in a 'shine operation.

Similarly, I have seen video where Indonesians were distilling diesel from crude oil, about a barrel at a time, by smelling the vapor, capturing it and condensing it, leaving the heavier fractions in the pot, so to speak, and letting the lighter ones vent to atmosphere before capture.  It isn't the most environmentally system, but they made a marketable (locally) product on a small scale. It is pretty common in Nigeria, as well, despite being environmentally unfriendly and downright dangerous. Error 404 (Not Found)!!1 (http://www.youtube.com/watch?v=4e3_bkKwgQY#)

Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on March 14, 2020, 08:30:56 pm
Why wouldn't it condense with the water? (I'm not a chemistry dude...).

Because you let anything coming off before the top of the distillation tower reaches 212 degrees escape to the atmosphere.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: DB on March 14, 2020, 10:51:26 pm
It would if you didn't vent it.

If it boils off at a lower temperature, you run up to just short of boiling water, vent the vapors, and that way those lighter ends go to atmosphere (unless you have a place or reason to capture them).  Distilling alcohol, you capture (selectively) the alcohol vapors and leave the water behind. Run through that a couple of times you can get up to 90-95% (Everclear) alcohol captured.
Moonshiners do it with pretty basic equipment.

If you switched to a different condenser and continued the the distillation process, with a mite more heat, you could boil the kettle dry and condense distilled water, too, but that isn't the product that pays the bills in a 'shine operation.

Similarly, I have seen video where Indonesians were distilling diesel from crude oil, about a barrel at a time, by smelling the vapor, capturing it and condensing it, leaving the heavier fractions in the pot, so to speak, and letting the lighter ones vent to atmosphere before capture.  It isn't the most environmentally system, but they made a marketable (locally) product on a small scale. It is pretty common in Nigeria, as well, despite being environmentally unfriendly and downright dangerous. Error 404 (Not Found)!!1 (http://www.youtube.com/watch?v=4e3_bkKwgQY#)

Got it. So you raise the temperature to just below the water boiling point and keep it there long enough to boil off the lower boiling point contaminants. All before starting the actual water distillation.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on March 14, 2020, 11:54:41 pm
Got it. So you raise the temperature to just below the water boiling point and keep it there long enough to boil off the lower boiling point contaminants. All before starting the actual water distillation.
Precisely!

You can do similar things with any distillation, what changes are target temperatures for the cooking, or for the condenser. Check out Fractional Distillation (https://energyeducation.ca/encyclopedia/Fractional_distillation), this of crude oil.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: jafo2010 on March 15, 2020, 08:26:00 pm
SmokinJoe...you mentioned you like distilled water  because it makes the best coffee.  Bottomline, distilled water has no taste.  When people first drink it alone, they often comment, oh yuck, this taste terrible.  Fact is, it has no taste.  It has nothing in it to give it taste.  So, with your coffee, you are getting the pure coffee taste.  Everything taste better with distilled water.

When I was young in Pennsylvania,  I can remember going to a spring in the mountains, and you could drink the water coming out of the side of a mountain, and it was cold and it was delicious tasting.  Very refreshing.  The taste was the minerals in the water.  That was in the 1950s. 

In 1980 or 81, Newsweek magazine dedicated an entire issue to water.  The cover had a parched earth map of the USA.  In that magazine, it indicated Ohio was the most polluted, with Pennsylvania right behind it.  It also indicated the entire east coast was terribly polluted, and that the aquafier level of water unsafe to consume.  Farm runoff was the primary reason, pesticides and herbicides largely polluting the aquafier level. 

As I understand it, the human body cannot assimilate and process inorganic minerals.  So, if one consumes inorganic minerals, they build up in the body just like they would a hot water heater.  Over time, they cause problems in the body, contribute to blocked arteries, kidney or gall stones, deposits in the joints, etc.

The woman I bought my first distiller from, she had a severe case of arthritis with deposits in the joints, her hands had huge nubs and were extremely painful.  She started drinking distilled water, and her hands returned to normal.  No more pain, no more meds needed either.  She lived to be 103.

Every time I see someone with bottled water(non distilled), the thought goes through my head that they are shortening their life.  The irony is that if you read the label on a lot of these bottled waters, they put the water through some purifying process, then they turn around and add back minerals for taste.  Ugggh.  I consider this stuff to be almost as bad as tap water.  Then there is the occasional story where the bottled water is discovered to have things in it like benzene, as in Perrier Water.

Loma Linda hospital in California years ago did a study on the 25 leading bottled water companies sold in California and found only one met the quality claimed on the label.  Back then, nearly 30 years ago, 70%+ of the households in California had point of service purification to some level within the home.  Unlike meat, there is no inspection of water producing plants to verify they are producing what they claim.  The best way to know what you are drinking is to control the process within your own home.  Distilled water is the purest form of drinking water.  Reverse Osmosis is the second, but you will find it expensive to replace the filters and the membrane through the years.  Plus, the first drop of RO water is the purest from the system, but the quality declines with each passing gallon, as impurities build up on the filter beds.  Unlike RO, distilled water remains constant in the quality.

To answer questions above, there is a valve for inert gases to escape the process on a distiller, and there is also a post filter to capture anything should it make it that far.  And another consideration, every distiller I bought through the years, I sold for more money than I originally paid for it.  They run forever.  I went from distiller 1 to distiller 2 only to get one with advanced features.  My first one was semi automatic.  One needed to manually set it to how much water you wanted to make, it automatically shutoff.  The second, was fully automatic, with a demand pump, and I had a second faucet at the sink and had my refrigerator hooked up to make distilled ice cubes and chilled water.

If you have ice cubes that are real white or mostly white versus clear, that is the minerals in the water doing that.  Distilled ice cubes are clear. 

I am writing my first book on water to tell my story and some of the case studies of people whose life I influenced in drinking distilled water.  And it is never too late to start drinking distilled water. 

I wish I had before and after photos of my uncle that had a severe case of congestive heart failure.  He was green/gray in color, and his cardiologist told him he was one step away from dropping dead at any time.  He started drinking distilled water in 1992, and he lived another 20 years.  The green/gray look went away after one year of drinking distilled water.
 How many people do you know with extreme congestive heart failure living beyond five years?  Everyone else I knew usually died in five years.

Without exception, everyone I convinced to drink distilled water benefited noticeably with their health and wellbeing.

Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on March 16, 2020, 04:20:54 am
@jafo2010 What make/model of distiller do you use? (We have been buying it by the jug, and I'd bet we could pay for the unit in less than a couple of years).
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: jafo2010 on March 24, 2020, 06:14:37 am
Joe, Just saw this.

I have used a product by the same company since 1979.  They are the leader in the distiller market.  All our embassies use their product, and all the staff at their homes as well.

If you want to check out their product go to    www.mypurewater.com (http://www.mypurewater.com)

They also picked up another brand they are marketing which is cheaper, but it is not the same quality.

If you are interested, I can save you a decent amount of money. 

@jafo2010 I removed personal identifiers from an open thread just in case you didn't want them all over the net. Send that info to Smokin Joe via personal message, please.  MOD4
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on March 24, 2020, 04:30:48 pm
It's not as much fun as you might think it is.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on April 29, 2020, 03:08:54 pm
It's about six months later, how are you feeling now Pete?


@jafo2010

Sorry for the late reply. Just saw your post.

Was doing better,but damned if the chemo brain isn't getting worse. Pressure in my head makes it feel like it wants to explode,and is even affecting my vision.

Think my lungs are filling up again because there is a lot of pressure in my chest,and I am having trouble breathing again.

Had a couple of moments,one right after the other yesterday,where I got so dizzy I thought I was going to faint. At the time I was going inside an Ace Hardware store,and luckily I had a basket to hold onto. Stood still for a few minutes,and it passed.

A hour later I am feeling a "flutter" in my chest again and having more dizzy moments,so I drive a mile to the nearest fire station and they hook me up to a machine that shows my pacemaker is occasionally kicking in to keep my heart beating,but other than than things seem ok. They want to take me to the hospital anyhow,but I refuse,and go back home.

I was sleepy when I got back home so I laid down on the couch to take a nap,and slept between 12-14 hours.

Evidentially I was exhausted from lack of sleep. Probably going to take a nap shortly because I am still sleepy.


Can't remember anything for more than a minute or two before I start forgetting it.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mountaineer on April 29, 2020, 04:11:26 pm
Let them take you to the hospital @sneakypete , especially if it seems your lungs need to be drained again. Please.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on April 29, 2020, 04:14:07 pm
Let them take you to the hospital @sneakypete , especially if it seems your lungs need to be drained again. Please.

I second that motion @sneakypete
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: skeeter on April 29, 2020, 04:30:46 pm
@jafo2010

Sorry for the late reply. Just saw your post.

Was doing better,but damned if the chemo brain isn't getting worse. Pressure in my head makes it feel like it wants to explode,and is even affecting my vision.

Think my lungs are filling up again because there is a lot of pressure in my chest,and I am having trouble breathing again.

Had a couple of moments,one right after the other yesterday,where I got so dizzy I thought I was going to faint. At the time I was going inside an Ace Hardware store,and luckily I had a basket to hold onto. Stood still for a few minutes,and it passed.

A hour later I am feeling a "flutter" in my chest again and having more dizzy moments,so I drive a mile to the nearest fire station and they hook me up to a machine that shows my pacemaker is occasionally kicking in to keep my heart beating,but other than than things seem ok. They want to take me to the hospital anyhow,but I refuse,and go back home.

I was sleepy when I got back home so I laid down on the couch to take a nap,and slept between 12-14 hours.

Evidentially I was exhausted from lack of sleep. Probably going to take a nap shortly because I am still sleepy.


Can't remember anything for more than a minute or two before I start forgetting it.

Well dangit, get some rest. And keep us posted.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Gefn on April 29, 2020, 04:31:35 pm
Oh dang @sneakypete

Please feel better. I hate thinking of you being sick.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on April 29, 2020, 05:21:27 pm
I second that motion @sneakypete

Let them take you to the hospital @sneakypete , especially if it seems your lungs need to be drained again. Please.

@mountaineer   @Bigun

There are a couple of problems with this. One is the local docs will stick a needle in my back and drain the lungs,but won't put in a drain tube. Each time they stick a needle in my chest,it costs me a lot of money I don't have to pay the fees because it is considered to be an ER procedure and the VA claims I need to go to a VA hospital to have this done. I am an Agent Orange veteran so I can't buy any supplemental insurance,and medicare doesn't pay it all.

The VA refuses to pay for any of my recent surgeries or operations because I didn't get prior approval. I didn't get prior approval because I went there to the ER in an ambulance,and to get approval I would have had to call a number in another state and asked permission first. I didn't have that number,and frankly,had other things on my mind at that time.

It's irrelevant,anyhow. It's an excuse the VA uses,not an actual reason. I have been through this with them before. They stall and stall until most vets are so afraid of losing their credit that they pay out of pocket to keep the phone calls and letters from happening because they just add stress.

I put my new congresscritter on this a couple of months ago,and have heard nothing from his office. The guy before him died,but he wouldn't have hesitated an instant to get pushy with them if he needed. This guy is new and knows nobody,is owned favors by nobody,and his staff doesn't seem to really care. Maybe I am wrong and they are working in the background? Maybe it is even partially my fault for not following up on it and reminding them once a week?

This is possible because due to chemo brain,I had forgotten all about it until the telephone calls and letters from collection agencies started arriving.

Temporary break. Finish the post in a few minutes.

 Ok,sorta back again.

Another part of the reason is I can't afford to pay for another ER visit,in addition to the doctors fees.

I WILL do this if it gets as bad as it was a year ago,but I'm not there yet,and still hoping the VA kicks in before I have to do it.

It is ridicilous for the VA to insist I drive to another state and back to get a simple procedure done that I can get done at a local hospital. Especially since there is no such thing as driving to a VA hospital for an emergency procedure. You MUST have an appointment for any type of surgery.

Any emergency patient that walks in their door gets put in an ambulance and sent to a local hospital,and I can do that at home and save a lot of time,money,and grief.

BUT......,as I said above,when it gets really bad again,I will go to the local ER to have it done and get billed again. Bad as it is,it is MUCH better than driving a couple of hours and then get so mad I want to choke somebody out. Especially since I no longer have the wind to chase the bastards down.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on April 29, 2020, 05:58:52 pm
@mountaineer   @Bigun  @Gefn  @skeeter

UPDATE!

Just got a email from my congresscritter's office,and it seems that the VA has now agreed to pay THOSE SPECIFIC hospital bills. They are supposed to make an appointment with me soon for me to meet with someone from the hospital to sign papers.

Nothing was said about the other 3 hospitals I was sent to,the surgeons,nurses,and other related fees,but this is,at a minimum,a crack in the dam.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on April 29, 2020, 06:07:25 pm
@mountaineer   @Bigun  @Gefn  @skeeter

UPDATE!

Just got a email from my congresscritter's office,and it seems that the VA has now agreed to pay THOSE SPECIFIC hospital bills. They are supposed to make an appointment with me soon for me to meet with someone from the hospital to sign papers.

Nothing was said about the other 3 hospitals I was sent to,the surgeons,nurses,and other related fees,but this is,at a minimum,a crack in the dam.

Great news @sneakypete! It's a damned shame veterans have to through all this BS just to get what they need and deserve.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on April 29, 2020, 06:16:45 pm
Great news @sneakypete! It's a damned shame veterans have to through all this BS just to get what they need and deserve.

@Bigun

I  honestly hope I am wrong,but the VA is like every other bureaucracy at the top,concerned with their budget more than anything else. As a result,I suspect it is semi-official,handed down from the top but not in writing,to cut every corner they can cut,even going so far as to try to get vets so pissed off they don't come back again for care.

I quit going to the VA Hospital in the early 70's,when a clerk there finally got me so mad I dragged the bastard across his desk and was in the process of choking him out when the security cops grabbed me.

They then decided I had PTSD (I don't,and never did) so they insisted I attend a "PTSD Rap  Session" (no kidding) to discuss my anger issues,and got so mad there at all the posers telling phony war stories about how stressed they were from the war,that I actually stood up and told them all they were a bunch of bleeping posers who were trying to rip the VA off for early retirement checks,and walked out after telling the shrink leading it that he should be ashamed of himself.

Didn't go back to another VA hospital for several years,and it was a different one in a different state.

BTW,I have GOT to write this. One of the worse offenders there was a guy that was the local president of "Point Man International",a professional PTSD group". Know what his job was during the VN war? He was a freaking radio operator on a Navy Destroyer patrolling offshore of VN. He TESTIFIED (yes,just like at a religious meeting) that he was so scared of the VN paddling out to the ship at night,scaling the sides,and sneaking in to murder him in his sleep that he used to sleep with a bayonet beneath his pillow. Don't ask me where a sailor on a destroyer that is a radio operator in their communications shack found a bayonet. I don't have a clue.

His VP? That guy was  a cook with the 101st Abn Divison that "suffered through " a sapper attack on their main fire base. There he was,1 of thousands,potentially facing off with 10-15 sappers. Imagine the horror,knowing that cooks were prime targets for assassinations,right?
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on April 29, 2020, 06:21:09 pm
@Bigun

I  honestly hope I am wrong,but the VA is like every other bureaucracy at the top,concerned with their budget more than anything else. As a result,I suspect it is semi-official,handed down from the top but not in writing,to cut every corner they can cut,even going so far as to try to get vets so pissed off they don't come back again for care.

I quit going to the VA Hospital in the early 70's,when a clerk there finally got me so mad I dragged the bastard across his desk and was in the process of choking him out when the security cops grabbed me.

They then decided I had PTSD (I don't,and never did) so they insisted I attend a "PTSD Rap  Session" (no kidding) to discuss my anger issues,and got so mad there at all the posers telling phony war stories about how stressed they were from the war,that I actually stood up and told them all they were a bunch of bleeping posers who were trying to rip the VA off for early retirement checks,and walked out after telling the shrink leading it that he should be ashamed of himself.

Didn't go back to another VA hospital for several years,and it was a different one in a different state.

I have been fortunate enough to have never once visited a VA facility and hopefully never will.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on April 29, 2020, 06:24:23 pm
I have been fortunate enough to have never once visited a VA facility and hopefully never will.

@Bigun

I hope you don't,either.

In all fairness,they are MUCH better today than they were in the 60's and 70's and had all the "Anti VN War" employees and staff. Almost all of those bastards has died or retired by now.

BTW,read my update to the post above this one.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: skeeter on April 29, 2020, 06:55:37 pm
@mountaineer   @Bigun  @Gefn  @skeeter

UPDATE!

Just got a email from my congresscritter's office,and it seems that the VA has now agreed to pay THOSE SPECIFIC hospital bills. They are supposed to make an appointment with me soon for me to meet with someone from the hospital to sign papers.

Nothing was said about the other 3 hospitals I was sent to,the surgeons,nurses,and other related fees,but this is,at a minimum,a crack in the dam.
:thumbsup:
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on April 29, 2020, 07:00:28 pm
@jafo2010

Sorry for the late reply. Just saw your post.

Was doing better,but damned if the chemo brain isn't getting worse. Pressure in my head makes it feel like it wants to explode,and is even affecting my vision.

Think my lungs are filling up again because there is a lot of pressure in my chest,and I am having trouble breathing again.

Had a couple of moments,one right after the other yesterday,where I got so dizzy I thought I was going to faint. At the time I was going inside an Ace Hardware store,and luckily I had a basket to hold onto. Stood still for a few minutes,and it passed.

A hour later I am feeling a "flutter" in my chest again and having more dizzy moments,so I drive a mile to the nearest fire station and they hook me up to a machine that shows my pacemaker is occasionally kicking in to keep my heart beating,but other than than things seem ok. They want to take me to the hospital anyhow,but I refuse,and go back home.

I was sleepy when I got back home so I laid down on the couch to take a nap,and slept between 12-14 hours.

Evidentially I was exhausted from lack of sleep. Probably going to take a nap shortly because I am still sleepy.


Can't remember anything for more than a minute or two before I start forgetting it.
Go get your ass checked out.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mountaineer on April 29, 2020, 09:43:32 pm
Nothing the VA does surprises me. My late father was injured aboard ship while in blackout conditions during one of those great battles of WWII - I think Okinawa. Both wrists and a few vertebrae crushed. He battled the VA a good part of his life to get a partial disability, then they'd require him to visit the hospital to see a doctor to confirm that he was still disabled. Unfortunately, he never got a doctor who actually spoke English, so it was hard for him to communicate the message that he was in constant debilitating pain.

Near the end of his life, suffering from dementia, he had to go to the VA hospital in order to qualify for some nursing home assistance, and my mother refused to take him to the one closest their house. It had a terrible reputation. She drove him 2 or 3 hours to another VA hospital which, at the time, was pretty good. In recent years it's become notorious for having patients drop dead from insulin overdoses.  *****rollingeyes*****  So infuriating. Our vets deserve better.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on April 29, 2020, 10:20:03 pm
Nothing the VA does surprises me. My late father was injured aboard ship while in blackout conditions during one of those great battles of WWII - I think Okinawa. Both wrists and a few vertebrae crushed. He battled the VA a good part of his life to get a partial disability, then they'd require him to visit the hospital to see a doctor to confirm that he was still disabled. Unfortunately, he never got a doctor who actually spoke English, so it was hard for him to communicate the message that he was in constant debilitating pain.

Near the end of his life, suffering from dementia, he had to go to the VA hospital in order to qualify for some nursing home assistance, and my mother refused to take him to the one closest their house. It had a terrible reputation. She drove him 2 or 3 hours to another VA hospital which, at the time, was pretty good. In recent years it's become notorious for having patients drop dead from insulin overdoses.  *****rollingeyes*****  So infuriating. Our vets deserve better.

@mountaineer

I got taken off jump status and was undeployable,so I had to leave SF and go to a conventional army unit,and lose my 55 bucks per month in jump pay in addition to never getting to go anywhere.

To give them credit,the army offered me a medical retirement,but I turned it down because I knew if I took that I would never be allowed back into SF again,and I was so foolish I just assumed I would recover in a year or two,and be able to enlist again. No such luck. Not long after I got out,"Agent Orange" became a "thing",and I was automatically barred from enlistment because of it. I know this to be a fact because I tried. They were even going to let me keep my rank.

More to the point,IIRC,I was drawing something like $39 a month in disability pay in 1970,and because I had a formal disability rating,I was not eligible to draw unemployment pay despite paying into it all my life. Even in 1970 you couldn't even eat on 39 bucks a month.

When I finally did get a Agent Orange disability rating of 30 percent around 1977 or so,it was only a 30 percent rating that only paid about 250 bucks. The good news was the VA pulled my 10 percent disabled rating on my back because combined with the 30 percent for Agent Orange they would have had to pay me almost enough money to live on.

The good news is I took the test for the post office exam again,and when they tried to not hire me based on having a bad back,I waved my official US Goobermint medical determination that I no longer had a bad back to them,and they had to hire me. Managed to work long enough for the post office to retire from there.

It has to be said that the VA of today is 10,000 times better than the VA of the 70's was. All the anti-VN war employees of the 60's and 70's have retired now,and even if the medical treatment isn't as good as it should and could be,the vets are treated MUCH better. The typical VA employee of today seems to care,and seem to do the best they can do for the vets.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mountaineer on April 29, 2020, 10:27:34 pm
It has to be said that the VA of today is 10,000 times better than the VA of the 70's was. All the anti-VN war employees of the 60's and 70's have retired now,and even if the medical treatment isn't as good as it should and could be,the vets are treated MUCH better.
Yeah, my father's worst experiences with them were in the 70s and 80s. The last hospital he went to, in 1993, was pretty good.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Fishrrman on April 29, 2020, 10:32:10 pm
I realize I'm dumb, but I'd like to ask:

If treatment in the VA health system is bad, why don't veterans just sign up for Medicare at age 65, and forget about the VA?

Is that prohibited by law, or something?
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on April 29, 2020, 10:46:10 pm
I realize I'm dumb, but I'd like to ask:

If treatment in the VA health system is bad, why don't veterans just sign up for Medicare at age 65, and forget about the VA?

Is that prohibited by law, or something?

@Fishrrman

No,but the problem is most vets are injured while still in their 20's or 30's,and you have to be able to eat and live until 65 to start drawing SS.

Which is what I have done for the most part since I turned 62. SS pays most of it,and I just paid the rest out of my pocket.

I just can't do this when the treatment bills run up over 200 grand. I just don't have the money.

And,on principle,since the US Government promised to pay all my medical bills if I got permanently injured if I would put on a uniform and risk my life,I shouldn't even HAVE to pay it.

I normally just pay the doctors bills out of my pocket not paid by SS because it reduces the stress on me,but there is no way I can pay off bills like this,and as a disabled veteran rated at being 100 percent service-connected disabled now,I shouldn't HAVE to pay it.

I kept MY promises,it's time for the government to keep theirs.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: jafo2010 on June 09, 2020, 02:04:44 am
Pete, I just read the comments here.  Disgusting is the only word that comes to mind regarding the treatment you have received.  If it helps any, if you give us your name and whatever pertinent info needed, I think it would help if everyone here willing to do so wrote their politicians on the continued injustice to veterans, mentioning your issues specifically.  I thought the law Trump had passed resolved the issues for veterans.  If that is not the case, our writing our politicians, including Trump, might just create enough of a stir to get these stinkers in Washington to do their job.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on October 12, 2020, 04:26:37 pm
Ok,here is a run-down on my experiences with Stage 4 Lymphoma AS  OF THIS DATE.

I guess it begins with me being in VN in the late 60's,and running covert reconnaissance and "direct action" missions into Cambodia and Laos. As all of you of a "certain age" know,the USAF was dropping tons of a chemical known as "Agent Orange" all along the Ho Chi Mihn Trail in North Vietnam,Laos,and Cambodia,to kill off the trees and other vegetation in order to give the USAF and USN fighters and bombers a clear view of the road from North Viet Nam to southern Cambodia,so they could bomb the troop and supply-carrying vehicles traveling along the road,and disrupt the supply train to the NVA troops operating in the south,and using base camps in the "neutral" countries of Cambodia and Laos.

The knew where to drop the chemicals because of covert action team's like the ones I served on were infiltrating into both nations,and physically finding them,marking their locations on maps,and usually,ambushing a convoy or a troop movement to get the NVA forces to attack us in order to get a mass of them in one place so they could bomb the hell out of them.

At that time Agent Orange was determined to be harmless to humans,and  I have seen photos of USAF air crews literally opening barrels of it and loading it in the hoppers to spray it wearing nothing more than normal fatigue pants and t-shirts. Not a hat,mask,or pair of gloves in sight anywhere. Many paid a terrible price for this later.

Anyhow,while out on one recon missions and resting on the ground in our overnight position,I started getting a terrible itch all over my back. One that couldn't be satisfied by scratching. So bad I couldn't sleep at all that night,and neither could the rest of the team due to all the noise I was making from moving around and scratching. The team had to be extracted early due to me not being able to continue with the mission,and jeopardizing them safety.

Got back to the base camp and the camp medics couldn't diagnose the problem,so I was transferred from Recon Company to a Hatchet Force (direct action) platoon while healing. I went on a few patrols with them before it got worse,and was sent me to the 8th ( I believe) Army field hospital in Nha Trang,where they had a Tropical Disease department. They took one look and told me there was a USAF doctor at the USAF Hospital at Camn Rah Bay that specialized in "that sort of thing".

I got there and he took one quick look and told me "I am ordering you to be med-evaced from VN because I have seen this sort of thing before,and it will never get better as long as you remain in a hot and humid climate."

I told him I would go,but not until after I went on the mission I had already been briefed on,that was due to launch in a day or two.

I had already committed to it,been briefed,and the yards in my squad knew what to expect of me,and I knew what to expect of them,and it's dangerous to all to "switch cast members" in situations like that.  He smiled and said he was going to do it anyway,but this didn't worry me. After all,I had once been a member of a "snatch team" that went to the Army field hospital in Pleiku to "snatch" one of their patients away from them they were planning on med-evacing to a Army hospital in Japan due to a head wound. He found out about this,and gave us a call and told us to come after him. So that's what we did,and our camp medics took over his care until he finished healing so he could go out on more missions. Bad decision on his part because he was killed in action not long afterwards.

Anyhow,I wasn't worried because if we could do this for "Sugar Bear",(his code name),we could do it for me,who only had a bad case of acne,right?

Boy was *I* surprised when I got back to the camp the day before mission launch,and discovered my orders sending me back to Bragg had already been published,and I had already been replaced by a new guy who had never heard a shot fired in anger before. All my personal possessions had already been packed up,and my issue weapons turned back into the arms room. I gave the non-issued weapons to friends on other teams,and was flying out to Nha Trang that same afternoon to process out of VN and go back to the US.

WHO ever heard of anybody getting med-evaced from VN for acne??????

Anyhow,I didn't think much about it because I DID start getting better almost immediately,but to my surprise,I had to leave SF because my profile kept me from wearing a parachute harness,so I couldn't make parachute jumps anymore.

This was what caused me to get out of the army. I loved SF almost as much as I hated the rest of the army.

So I got out,and over the years had a few incidents where it came back for a while,and then disappeared. I did notice that after about 2 years of being discharged I developed a "bubble belly",but at first attributed that to having a LOT more time to drink beer and eat junk food,and doing a LOT less exercising.

I WAS curious about why I could hear "water" sloshing around in my stomach when doing something like riding in a car crossing railroad tracks,for instance,but the VA docs had no interest in checking it out,so they told me to "just ignore it,and it will go away".

It didn't,and a couple of years later "Agent Orange" became a big deal,and the US Military and the chemical company (Dow?) finally admitted it was a deadly poison that COULD affect humans.

Guess what some of the symptoms were.

Fast forward a couple of decades of total neglect by the VA doctors,other than telling me I was scamming the government for disability pay,and I am suddenly diagnosed with Stage 4 Lymphoma.

Guess which cancer is directly related to Agent Orange exposure.

So I get the maximum amount of chemo blasts allowed in the minimum amount of time,and my memory is still in recovery mode. Or at least I hope it is. I also got radiation treatment at first.

When it was done,my doc says I am maxed out on chemo,but good for the time being,and that mine was incurable,and WHEN it comes back "We have a little pill we can give you to take each day to help you deal with it. Meanwhile,I will schedule PET exams for you every couple of months so we can keep track of what is going on with your system.  I would get a PET test and see the doc the following week to get a reading on how I was doing.

Imagine my surprise when I go back in to get the reading for my most recent PET exam a couple of weeks ago,and the doc gets a surprised look on her face,and tells me "You are now cancer-free. The PET scan couldn't find a trace of cancer anywhere in your system."

I wrote this long post and went into details  in order to "set the stage" so you would understand how hopeless my situation seemed to be right up to a few short weeks ago.

   SO,"take heart fair friends,it ain't over until it's over!" If someone with MY background who is in their
70's and never once even pretended to eat healty,never met a drug they didn't like,drank whiskey to the point I lost track of what year it was and where I was living at one point, and smoked up to 3 packs of cigarettes a day for 30 years or more can make a full recovery,ANYBODY can make a full recovery!


The important thing to remember is to just keep dancing until the music stops. NEVER give up,NEVER!



Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on October 12, 2020, 07:34:24 pm
@sneakypete Thanks for posting that. I have a granddaughter who has fought off lymphoma a couple of times. The claim was that it was from exposure to anhydrous ammonia from a train derailment in Minot, ND, but I think there may have been a carload of Roundup on the train as well that may have leaked (Its a common herbicide up this way, used in mass quantities, and why I have always stayed away from spraying operations). But that's not the official story, so my suspicion is just that.

I worked construction with a guy in the early '70s who used 2,4,D on a golf green, but told me to get the hell away from it (I was 16, then), and I am glad he did. 'Murphy' had been in Vietnam, and said it was "bad sh*t", so I believed him. Turns out he was right. I haven't been a fan of herbicides or even bug spray since, and I think that has generally kept me healthier, despite some of the stuff I did in my 'bad old days', which I will not elaborate on.

I'm glad to hear you are on the mend. Maybe we can keep your cantankerous self around here for a while longer  :laugh:
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: berdie on October 12, 2020, 07:35:52 pm
Like I've already said...you are tough. Imho this is great news and I celebrate it.

And if I haven't said so before...thank you for your service.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mountaineer on October 12, 2020, 07:40:56 pm
Love your story, @sneakypete  and am thrilled about the doctor's latest report.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Gefn on October 13, 2020, 09:52:05 am
@sneakypete you and yours, are in my thoughts all the time.

I am happy about your latest news. Hang in there, Sir, you got a lot of stuff to tell us about on here!

 6666kiss
Title: Re: Cancer and care update
Post by: sneakypete on January 18, 2021, 12:18:18 pm
@mystery-ak  @Right_in_Virginia  @EdJames  @Victoria33  @Freya  @Bigun  @SZonian  @Cyber Liberty  @roamer_1  @Sanguine @truth_seeker @RoosGirl @DCPatriot  @To-Whose-Benefit?  @BassWrangler  @Lando Lincoln  @mountaineer  @Elderberry  @GT Hawk  @berdie @Sighlass  @Applewood 

http://www.gopbriefingroom.com/index.php/topic,344993.0.html (http://www.gopbriefingroom.com/index.php/topic,344993.0.html)

I apologize if I missed anyone on the ping list above. In a lot of pain,haven't been sleeping,and am more than a little pissed off. These may not be good excuses,but they ARE the only ones I have.

Ok,I think everyone interested knows by now that all my PET scans for the last 9+ months have shown me to be cancer-free,despite an original diagnosis of incurable Stage 4 Lymphoma. Even my cancer doc seemed a little shocked when she first read the PET scan results to me. Had a BIG smile on her face,too! She is in what is in MY opinion one of the worse career fields possible when it comes to delivering good news. She,and the others on her career path deliver very bad news to someone on a daily basis,and this HAS to be a drag on your life. Especially when it comes to dying children. I do not mind admitting *I* am NOT tough enough to deal with that,and greatly admire the determination and inner-strength of character these MD's have.

Ok,enough of that. I have updates,and they are not good. My updates are more related to the medical situation created by this fake virus crap that has hospital rooms reduced by at least a third,and fewer hospital rooms means the bean counters who run the hospitals are VERY picky about who they will admit as patients.

IF you have a "generous" (from the Hospital Administrators POV) you are "golden". If the VA is your only insurance plan,you are screwed because they refuse to pay for a lot of the care you might need,and pay less than everyone else for the ones they do pay. Even then it takes them months to cough up the money. The end result of this is if you are a 100 percent service-connected disabled vet,you basically need to find a practicing Witch Doctor because no one else will sell you insurance anyone but a multi-millionaire can afford,and the VA Medical System seems to have a VERY focused care plan. For example,if you need a prosthetic leg or arm,you are definitely going to the right place when you go to a VA hospital to get one made. Thanks to the decades of guerilla war in the Muddle East with no actual attempt to win the damn thing,there is nobody on the planet that has more experience and knowledge on how to do this and what needs to be done.

If your problem is you need false teeth,a cast for a broken arm,meds for diseases like diabetes,etc,etc,etc,you are probably ok.

Mention the word "Agent Orange" and everybody shrieks on horror and runs for the hills. Seems like many in the VA system,starting with some of the doctors and definitely running rampant through the  management/beancounter level,STILL believe vets are trying to rip off the government for undeserved compensation. Part of this is due to the fact that most of the medical care professionals working for the VA are working there because they are not very good doctors and can't buy the insurance they need to work at a private practice (you can NOT sue the VA for malpractice),or recent med school graduates working to pay off school loans provided by the government.

Ok,enough background,although I will do my best to answer any questions that might be asked.

My current problem started maybe a year ago. Not sure how long ago it began due to both chemo brain and the chills and fevers I have been having for an undetermined amount of time. I am only able to focus well enough right now to write this because of the pain from my left leg,which is due to a botched operation at the local VA hospital to remove an "unspecified growth" in the 1970's. Had a "bump" about the size of a golf ball grown right up on the inside of my knee,right beside the knee,so not having any insurance or any money,I went to the VA to get it removed.

Being a VN vet,anytime and every time they cut something from me they can't or don't want to identify,they call it an "unspecified growth" and tell me if it turns out to be anything serious,they will notify me. So far they have never notified me of any results,good or bad.

In THIS specific case the biggest problem came from the incompetent VA surgeon forgetting to reattach the major blood vein that was supplying "the growth" with blood when they cut it out.

This killed the circulation in my left leg and caused it to swell so big I could only wear shorts,and it got infected and turned black and purple after a few months of them giving me more and more fluid pills to try to bring down the swelling. I finally told them no more damn fluid pills because I was so freaking dehydrated that my lips were sticking together,so they offered to amputate it and give me a prosthetic leg.

That was when I told them to go bleep themselves because I was going to see REAL doctors and get a second,and maybe even a third opinion.

So I went to see a local vascular surgeon,and he told me "No problem. I can restore most of the blood flow to your leg by putting a synthetic vein in your leg above the bad part,and then running it down your leg to attach it to what remains of the good part down low. It won't be a perfect solution,but it will save your leg."

He then told me the "but",which was,"I can't do this right away,though. First we have to kill the infection before I can operate."

Believe it or not,he killed the infection using neoprene pads that were impregnated with the metal silver. Silver kills bacteria like nobody's business! Once a week he would take off the bandages on my leg to remove the neoprene pad,and it would be absolutely coated with a black substance that looked like tar. What it was,was dead bacteria.

Soooo,this pretty much solved the leg problem for a couple of decades. Yes,my left leg remained swollen,but nowhere near as bad as it was,and I had good circulation and feeling in it.

End of Part 1 Part 2 follows

 







Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on January 18, 2021, 01:03:01 pm
@mystery-ak  @Right_in_Virginia  @EdJames  @Victoria33  @Freya  @Bigun  @SZonian  @Cyber Liberty  @roamer_1  @Sanguine @truth_seeker @RoosGirl @DCPatriot  @To-Whose-Benefit?  @BassWrangler  @Lando Lincoln  @mountaineer  @Elderberry  @GT Hawk  @berdie @Sighlass  @Applewood

http://www.gopbriefingroom.com/index.php/topic,344993.0.html (http://www.gopbriefingroom.com/index.php/topic,344993.0.html)

 

 
Part 2

So now that we have the history taken care of,we get to present time,that SEEMS to have began with my cancer diagnosis.

For months now my left leg has been so swollen with pus that I can only wear big overalls or shorts. My left is too big to fit into regular pants. It is not black and purple like it was the last time it was seriously infected,but it does hurt like a bastard. It is not unusual for me to go two days in a row with no sleep or only a couple of hours,thanks to the pain.

So I decide to go to a different VA hospital that is about 250 miles away because I have  heard so many good things about it,and sure enough,it is so different the staff there might as well be aliens from another solar system. Maybe THE nicest bunch of people I have ever dealt with,as well as the most helpful. No,I did NOT get to see a vascular surgeon that day. The system just isn't set up that way,but I did get an appointment to see one  a few weeks later,and it was a real revelation when I did.

Within 10 minutes of my scheduled appointment the surgeon himself walked out into the waiting room,introduced himself,shook my hand,and led me back to his office to have me explain my problems,answer his questions,and have him do an ultrasound test on my left leg.

When he finishes,he tells me "The bad news is that the VA is not equipped to deal with your problem,but I have a few ideas and need to talk with the chief of surgery to see what we can do. Please sit tight. I should be back in a few minutes."

When he came back he has the Chief of Surgery with him,and she smiled at me,shook my hand,and told me they had decided that I needed to be sent to a private clinic that WAS equipped and qualified to deal with my problems,and to not worry about the expenses because they would have the VA pay all the expenses under their "fee basis program".

Not only that,but the private clinic was only 130 miles from home,and they also told me they would pay my travel expenses and motel expenses.

Sooo,they sent me home to wait.

Then the whole Covid-19 thing blew up,which means that both the VA hospital AND the private clinic lost at least 1/3rd of their available patient rooms.  Not to mention their  staff.

Which means that the bean counters that run the private clinics start to pick and choose patients based on their health insurance plans.

Which means a few months later I got a  letter from the director of the private clinic telling me I do NOT have "a vascular problem,but a wound care problem,and they do not do wound treatment,so were referring  me back to the VA for treatment."

The SAME VA whose Chief of Vascular Surgery had told me they were not equipped to treat me,and referred me to that private clinic because they could,and because the clinic had a contract with the VA to treat VA patients the VAMC couldn't help.

A short time later I get a letter in from that same VA hospital telling me I have an appointment at their wound treatment clinic in 30 days or so,and that if I miss that treatment it can result in the loss of my "privilege" to be treated at the VA hospital.

These cretins expect me to drive over 500 miles round trip and rent a motel room overnight,JUST TO GET A FREAKING BANDAGE CHANGED,and are threatening to remove my VA Hospital privileges if I miss the appointment.

Keep in mind that I am changing these bandages 2 to 3 times a day myself,right here in my house.


Sooo,I called my new Congresscritter about this,and learned that "Due to Covid-19 our office is closed,so please call XXX-XXXX."

I call that number and get his office assistant who is now running his office from her home. I told her about this and even sent her an email,but to be  honest I was so out of it at that time due to fever and Oxy that I have no idea what I said or what she said to me.

Been meaning to call her back,but due to fever and being bombed with pain pills,I kept forgetting.

Now the pain is worse than ever,my fever is returning,and the local doc is refusing to refill my Oxy prescription because he is "afraid you will become addicted".

On top of that the vascular surgeon at the good VA hospital is not returning my phone calls or emails. For all I know,he may have been put on leave as the VA cut operating staff due to Covid-19.

Frankly,I am running out of options as well as patience. In NORMAL times,I honestly don't think this would be much of a problem,but thanks to Covid-19 the whole damn world seems to be in a full-fledged panic,and it is impossible to maintain communications.


I can NOT be the only one having these communication/appointment problems.

Any suggestions that doesn't involve rifles?

Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on January 18, 2021, 01:22:19 pm
I realize I'm dumb, but I'd like to ask:

If treatment in the VA health system is bad, why don't veterans just sign up for Medicare at age 65, and forget about the VA?

Is that prohibited by law, or something?

@Fishrrman

No,in fact,enrollment in Medicare is automatic on your 65th birthday.

The problem is Medicare does not pay ALL the bills,leaving you holding the bag for other bills you can't afford to pay.

And to be honest,in this day of "Big Corporate Hospital,Inc",even local hospitals are picking and choosing their cases. My "local" hospital (only about 25 miles away) used to be pretty good,and some of the local doctors were DAMN good!

Then "Big Corporate Hospital,Inc" moved in and bought the local hospital,as well as all the private practices of the local docs.

Remember my story of the local vascular surgeon who originally saved my leg? He is still there,but I can no longer see him because I have to schedule the appointments through his new masters at "Big Corporate Hospitals,Inc",and they channel me through their "wound treatment care program" every time I try,which has been 3 times now. When I go there,hoping to get  a referral to the vascular surgeon,the only thing that happens is some rube changes the bandages on my leg,and they don't even do a good job of that. The last one seemed better suiting to fixing flats at a tire store than working in the medical field.

3 visits now,3 times I have tried to get a referral to the vascular surgeon,and the last time had a really snotty nurse actually laugh at me when I asked.

IF I could see that doc,he could and would help me,but I can never get to see him.

My OPINION is that I never get to see him because it is more profitable to schedule other people,and there are only so many hours in a day that people can be billed.

If this isn't happening where you live yet,keep an eye out and start public protests when it does.

Do NOT listen to the local docs who tell you they will never sell out to the Borg. They will. I now have 3 good docs I used to see locally who made the same claim,but eventually they caved and sold out.

Billionaire corporations who are only interested in total domination and profits are almost impossible for a MD to fight. The only private doc I have left is my heart surgeon,who is in his late 70's,has a huge patient base,and can't be bought out because he loves his job and already has more money than his grandchildren can spend.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on January 18, 2021, 02:43:44 pm
@sneakypete I'm sorry to hear about you having to go through all that and wish I had some helpful suggestion for you but I don't.  It thoroughly pisses me off that a guy like you, who gave so much, gets treated like that but it seems that I'm unable to do anything about that either.  The gooberment only needs us when they have some dirty work to do somewhere and once we are used up and/or they no longer need us you are on your own.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: mountaineer on January 18, 2021, 03:01:18 pm
I'm with Bigun, @sneakypete - angry on your behalf, but feeling powerless.  :crying:
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: skeeter on January 18, 2021, 03:05:08 pm
I'm with Bigun, @sneakypete - angry on your behalf, but feeling powerless.  :crying:
'Powerless' is a perfect adjective to describe alot of things lately.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on January 18, 2021, 03:32:24 pm
'Powerless' is a perfect adjective to describe a lot of things lately.

@Bigun @mountaineer @skeeter

Yup! That's why politicians love bureaucracies so much. ;They can hide behind them any time they want,and nobody can find their complicity in any illegalities if they don't want them to be found.

 "Iz not my falts,man!" seems to be the mating cry for bureaucrats.

If you can just manage to back one into a corner and get your hands around his throat,you can get him to listen to reason. Otherwise you are on your own unless what you happen to want is also something he or she happens to want. They will then promote it as a unselfish act to help their constituents.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: skeeter on January 18, 2021, 03:33:48 pm
@Bigun @mountaineer @skeeter

Yup! That's why politicians love bureaucracies so much. ;They can hide behind them any time they want,and nobody can find their complicity in any illegalities if they don't want them to be found.

 "Iz not my falts,man!" seems to be the mating cry for bureaucrats.
Thats when you can get them to admit there's a problem.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on January 18, 2021, 03:35:17 pm
Thats when you can get them to admit there's a problem.

@skeeter

Yeah,but you can't get them to do something about it unless you can convince them it is in their own best interests to do so.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: skeeter on January 18, 2021, 03:38:03 pm
@skeeter

Yeah,but you can't get them to do something about it unless you can convince them it is in their own best interests to do so.

Of course. Government now exists solely for its own sake. We're just its host.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: roamer_1 on January 18, 2021, 04:56:42 pm
@sneakypete

I had much the same frustrations... And why I walked off. The money ain't in the healing, the profit is in the maintenance. They'll keep you coming back till you play out. You do well to see it for what it is.

So I went off the reservation and went my own way. Had I not, I would likely be dead. Them sombiches had me on buckets of pills that did nothing, and fought with me over pain relief. For years. YEARS.

I had a God moment FWIW, though I know your position on that, so  won't bore you with the miracle... But I will tell you this: Seven YEARS I spent in that damnable wheelchair, in screaming-yellow-bobsled-run-from-hell pain. I held my mud and water all damn day so I would only HAVE to get up once to do my business and maybe bath if I could stand long enough. I slept in 10 minute naps, all the time... nodding off to sweet relief, only to jolt back awake from the pain... for seven_very_long_years.

Then I went alt-med, and the miracle aside, it was a Cheyenne medicine man that brought me healing. A month after I went away from the vultures at the hospitals, I was walking, and relatively free of pain. And what worked was native medicine and hillbilly remedy (which are largely the same thing), with a good bit of health through diet and naturopathy.

If you need to be sawed on, unless you know a good vet that will work with you, you are stuck with the western docs. And probably rightly.

But an at-med doc would have perked up finding out that silver was kicking ass... Don't do it without a healer, preferably a western doc w/ an alt-med side-hustle, but I know damn well that hearing that, my doc would have put me on a colloidal silver regimen... That is taken IN not on. Best be careful with that, because you sound so infested that the die-off has to be a controlled thing, or all the dead bugs in you will cause you to go septic, and might just kill you.

And there are natural meds that help a lot reducing swelling and increasing circulation. Hell, a  good sweat will do wonders. It can't hurt to seek alt-med. Considering your ancestry I imagine you can get something  going with the natives. And you are back in the sticks, so I imagine you can get at the hillbillies... Careful going on though. find a healer by word of mouth. There are just as many shysters on that side of the fence as where you are now.

Scares me though - not in that they can't fix a lot, but it sounds like some of this is going to be fixing what western docs did wrong and artificially... which shit is likely beyond any help without digging around, hence back to the surgeons.

The only other option I see is to go full bore western med. Buy into Humana or some other insurance plan that will cover the contingencies that medicare won't cover and knock the balls to the wood in conventional med away from the VA. Rack up a bill if you have to - you can always take a medical bankruptcy after the fact, or a full bankruptcy if it is needed. And it would serve em right after all you've been through. They've sucked enough of you up by now.

If it goes there... they can't take pensions. They can't take your house, nor can they take your last means of transportation. Any bank accounts otherwise can be attached, and anything titled otherwise can be taken, so conduct yourself accordingly well before the fact.

And finally - if the lymphoma was a misdiagnosis, why the hell are you still enduring chemo?
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Applewood on January 18, 2021, 06:23:56 pm
@sneakypete

Sorry to read about all your troubles, man.  You are correct that Medicare alone won't cover everything; you would need a supplemental policy.  But good luck trying to get one with your health issues (pre-existing conditions). 

I'm angry that the VA does not take care of our veterans.  Politicians of both parties promise improvements, but it gets worse instead of better  Despite all the lip service, no one in DC really cares about our vets.

Don't know where you live, but...is there a hospital near you that is university-affiliated?  I'm lucky where I live to have available a number of choices, including several university owned hospitals.  In  complicated cases like yours, they have the expertise and experience.  They know all the latest research and may have done research themselves. 

Of course, the hard part is getting an appointment to see anyone.  With COVID, hospitals and doctors have their hands full.  They have pushed anyone with other health issues to the back of the line as far as health care is concerned.  You will find that to be true, no matter where you go.

I know what you mean about corporate hospitals, but these days independent hospitals are disappearing simply because they don't have the resources to survive.  But for some hospitals, going corporate has actually improved them.  I have one formerly independent hospital about a mile or two from my house.  For years that place was a cesspool.  I would travel long distances to much better university-related hospitals rather than take my chances with the hospital closest to home.  But since that hospital is now part of a corporate health system, it has very much improved. 

Anyway, I do wish you well and hope you can get in to see doctors and staff who know what the H they are doing.   

Title: Re: Share your cancer journey - and any other personal medical experience
Post by: DB on January 18, 2021, 08:27:01 pm
@Bigun @mountaineer @skeeter

Yup! That's why politicians love bureaucracies so much. ;They can hide behind them any time they want,and nobody can find their complicity in any illegalities if they don't want them to be found.

 "Iz not my falts,man!" seems to be the mating cry for bureaucrats.

If you can just manage to back one into a corner and get your hands around his throat,you can get him to listen to reason. Otherwise you are on your own unless what you happen to want is also something he or she happens to want. They will then promote it as a unselfish act to help their constituents.

I think politicians love bureaucracies because no one can be held accountable while at the same time allowing the expansion of power to themselves. Bureaucracies are essentially a big circle jerk that allows everyone involved to point the finger elsewhere while getting paid well.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: berdie on January 18, 2021, 09:53:37 pm
@sneakypete This is all kinds of wrong. I am mad for you.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on January 18, 2021, 11:14:48 pm
@sneakypete

Sorry to read about all your troubles, man.  You are correct that Medicare alone won't cover everything; you would need a supplemental policy.  But good luck trying to get one with your health issues (pre-existing conditions). 

I'm angry that the VA does not take care of our veterans.  Politicians of both parties promise improvements, but it gets worse instead of better  Despite all the lip service, no one in DC really cares about our vets.

Don't know where you live, but...is there a hospital near you that is university-affiliated?  I'm lucky where I live to have available a number of choices, including several university owned hospitals.  In  complicated cases like yours, they have the expertise and experience.  They know all the latest research and may have done research themselves. 

Of course, the hard part is getting an appointment to see anyone.  With COVID, hospitals and doctors have their hands full.  They have pushed anyone with other health issues to the back of the line as far as health care is concerned.  You will find that to be true, no matter where you go.

I know what you mean about corporate hospitals, but these days independent hospitals are disappearing simply because they don't have the resources to survive.  But for some hospitals, going corporate has actually improved them.  I have one formerly independent hospital about a mile or two from my house.  For years that place was a cesspool.  I would travel long distances to much better university-related hospitals rather than take my chances with the hospital closest to home.  But since that hospital is now part of a corporate health system, it has very much improved. 

Anyway, I do wish you well and hope you can get in to see doctors and staff who know what the H they are doing.

@Applewood

The closest VA hospital to me is in Hampton,VA,and even that is  several hours away.  I have been told it is rated as the 4th worse VA hospital in the nation,and believe it. Mostly populated by blacks and former sailors,if you are former US Army or USAF,you have a hard time even getting a clerk to talk to you. If you are white,you can also sense a "certain attitude". This MAY have changed some since the last time I was there,though. Most of the shitheads that gave me so much trouble in the past are retired now.

If you can't beat the bastards,outlive them!

After reaching across the desk and dragging the VA puke operating it closer to me so he could hear me better twice,I no longer go there.

I will admit that the last time I went there was maybe 2 years ago,it was a thousand times better than it used to be.

Which ain't saying much.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on January 18, 2021, 11:29:58 pm
@sneakypete

I had much the same frustrations... And why I walked off. The money ain't in the healing, the profit is in the maintenance. They'll keep you coming back till you play out. You do well to see it for what it is.

So I went off the reservation and went my own way. Had I not, I would likely be dead. Them sombiches had me on buckets of pills that did nothing, and fought with me over pain relief. For years. YEARS.

I had a God moment FWIW, though I know your position on that, so  won't bore you with the miracle... 

@roamer_1

 I never argue with anything that works,but I also realize the just because something works for one patient,that doesn't mean it will work for all patients.

Never underestimate the power of faith,although this does NOT necessarily mean "religious faith". It CAN mean that,though. Faith is faith,and there is power in positive thinking.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on January 19, 2021, 12:10:43 am
@sneakypete I am so sorry to hear what you are going through.  My immediate thought is why isn't the VA sending a home health nurse to your home to help with treatment and bandaging; the least that they could be doing.

I'm angered at the treatment or lack of treatment, compassion and consideration that you are getting from the VA. That is unacceptable. 

It was my understanding that with new laws in place that the VA had to treat and pay for a facility for you to go to that was closer and it does NOT have to be a VA facility.  My father-in-law who was a WWII vet went to local doctors/specialists because the VA specialist that they wanted him to go to was over 100 miles away.  After my husband began making demands they finally paid for a local specialist that he saw and they coordinated also with Hospice care, but he had to see the local VA doc once a month to ensure that the VA would still pay for his treatment.

I wish I had some answers. I will continue to pray for you and may God heal you and give you relief from pain so that you can live in comfort and get some rest!

God Bless You @sneakypete
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on January 19, 2021, 12:38:55 am
@sneakypete   I am hoping that somehow this may help you and maybe you've already been down this route ...  Trump signed a law called the VA Mission Act last June....here is an excerpt ...

WASHINGTON – Veterans will have expanded access to medical care outside Department of Veterans Affairs facilities beginning Thursday under a law signed by President Donald Trump last year and touted as a major achievement by Trump on the campaign trail.

Rules established under the law and published Wednesday in the Federal Register say the VA will pay for veterans to see non-VA doctors if they have to wait longer than 20 days or drive more than 30 minutes for primary or mental healthcare at a VA facility.

For specialty care, they can see private doctors at VA expense if they have to wait longer than 28 days or drive more than an hour to see a VA provider.

Previously, veterans who had to drive more than 40 miles or wait longer than 30 days could choose to see a private doctor paid for by the VA.

VA officials previously estimated the new rules could increase the number of veterans eligible for VA-sponsored private care to as many as 2.1 million – up from about 560,000.

The rules going into effect Thursday also allow veterans to go to non-VA urgent care clinics at VA expense without prior approval, though they may have to pay a co-payment.

Trump signed the law last June, known as the VA MISSION Act, but its key provisions didn’t take effect until now.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on January 19, 2021, 01:06:06 am
@sneakypete 


Quote
It was my understanding that with new laws in place that the VA had to treat and pay for a facility for you to go to that was closer and it does NOT have to be a VA facility.
 


That is true and that IS what the VA did,but what are you going to do when that civilian facility refuses to treat you by making a bogus claim you are seeking wound treatment instead of cancer treatment. This is PRECISELY what the civilian clinic the VA referred me to claimed.

It is MY theory the reason they are doing this is two-fold. First of all,the VA doesn't pay as much as private insurance companies.

Secondly,with this bogus Covid-19 crap ALL those clinics have lost 1/3 of their rooms,which means they have lost 1/3 of their income. Put the two together,and it seems obvious to ME they are using bogus data to turn my down so they can use that room for a civilian with an insurance company that pays the full amount charged.

And since they are a civilian organization,there isn't a damn thing I or the VA can do about it.

I GUESS the VA could threaten to cancel all future contracts with them on grounds of breach of contract,but I am also guessing the VA Wusses are afraid that will backfire on them and the private companies would then refuse ALL VA patients. This would NOT hurt the VA,but it would hurt the patients they seek outside care for.

Just a guess,but it is the only thing that makes sense to me.

What we NEED is for a few congresscritters to get together and threaten to fine all those private companies for breach of contract and fraud,but it would take stones to do that because the private health care companies are no doubt lining the pockets of the legislators to prevent that from happening,so it ain't likely to happen.

 
BTW,went to see a local doc today,and she gave me some painkillers and anti-biotics that really turned me around. I was having chills and fevers,and wanting to vomit when I went to see her,but within a hour of getting the scripts filled and taking them,everything is damn near peachy-keen now.

I used to live with her mother and have known her since she was born. Those are the kind of connections we all need. Didn't even have an appointment. I just walked in and told my ex I needed some new meds,and how bad I was feeling,and she went right into her daughter's office and arranged it all.

The only thing scary is  she looks exactly like her mother did at that age,and there has been nothing in my life that has scared me as much as her mother.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on January 19, 2021, 01:09:43 am
@sneakypete   I am hoping that somehow this may help you and maybe you've already been down this route ...  Trump signed a law called the VA Mission Act last June....here is an excerpt ...

WASHINGTON – Veterans will have expanded access to medical care outside Department of Veterans Affairs facilities beginning Thursday under a law signed by President Donald Trump last year and touted as a major achievement by Trump on the campaign trail.

Rules established under the law and published Wednesday in the Federal Register say the VA will pay for veterans to see non-VA doctors if they have to wait longer than 20 days or drive more than 30 minutes for primary or mental healthcare at a VA facility.

For specialty care, they can see private doctors at VA expense if they have to wait longer than 28 days or drive more than an hour to see a VA provider.

Previously, veterans who had to drive more than 40 miles or wait longer than 30 days could choose to see a private doctor paid for by the VA.

VA officials previously estimated the new rules could increase the number of veterans eligible for VA-sponsored private care to as many as 2.1 million – up from about 560,000.

The rules going into effect Thursday also allow veterans to go to non-VA urgent care clinics at VA expense without prior approval, though they may have to pay a co-payment.

Trump signed the law last June, known as the VA MISSION Act, but its key provisions didn’t take effect until now.


@libertybele

THANK YOU ,THANK YOU ,THANK YOU!

You just made my year!. The closest hospital if more than 30 minutes from where I live. I will be copying and pasting your post to my desktop!
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on January 19, 2021, 01:11:42 am
 


That is true and that IS what the VA did,but what are you going to do when that civilian facility refuses to treat you by making a bogus claim you are seeking wound treatment instead of cancer treatment. This is PRECISELY what the civilian clinic the VA referred me to claimed.

It is MY theory the reason they are doing this is two-fold. First of all,the VA doesn't pay as much as private insurance companies.

Secondly,with this bogus Covid-19 crap ALL those clinics have lost 1/3 of their rooms,which means they have lost 1/3 of their income. Put the two together,and it seems obvious to ME they are using bogus data to turn my down so they can use that room for a civilian with an insurance company that pays the full amount charged.

And since they are a civilian organization,there isn't a damn thing I or the VA can do about it.

I GUESS the VA could threaten to cancel all future contracts with them on grounds of breach of contract,but I am also guessing the VA Wusses are afraid that will backfire on them and the private companies would then refuse ALL VA patients. This would NOT hurt the VA,but it would hurt the patients they seek outside care for.

Just a guess,but it is the only thing that makes sense to me.

What we NEED is for a few congresscritters to get together and threaten to fine all those private companies for breach of contract and fraud,but it would take stones to do that because the private health care companies are no doubt lining the pockets of the legislators to prevent that from happening,so it ain't likely to happen.

 
BTW,went to see a local doc today,and she gave me some painkillers and anti-biotics that really turned me around. I was having chills and fevers,and wanting to vomit when I went to see her,but within a hour of getting the scripts filled and taking them,everything is damn near peachy-keen now.

I used to live with her mother and have known her since she was born. Those are the kind of connections we all need. Didn't even have an appointment. I just walked in and told my ex I needed some new meds,and how bad I was feeling,and she went right into her daughter's office and arranged it all.

The only thing scary is  she looks exactly like her mother did at that age,and there has been nothing in my life that has scared me as much as her mother.

Good .... I am so glad to hear it.  Hopefully you'll be able to continue to get the care that you need (for what it's worth I've prayed for you in the past -- maybe some prayers have been answered? I know how you feel about that but ....) anyways I'm really glad for you.

As for looking like her mother .... the mind does wonderful things ... try imaging her as something or someone else.   happy77
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on January 19, 2021, 02:06:53 am

As for looking like her mother .... the mind does wonderful things ... try imaging her as something or someone else.   happy77

@libertybele

Jabba the Hut would be great,but that is waaaay too big a stretch. Her mother was,and still is a very beautiful woman when she wants to get all dolled up,and the daughter is following in her footsteps by looking to be about half her actual age.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Smokin Joe on January 19, 2021, 04:05:29 am
@skeeter

Yeah,but you can't get them to do something about it unless you can convince them it is in their own best interests to do so.
Do any of those sumbeeches want to be seen as crapping on a veteran? I know out this way that would not play well at all.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on January 19, 2021, 06:01:03 am
Do any of those sumbeeches want to be seen as crapping on a veteran?

@Smokin Joe

You  MEANT to type the words "right-wing reactionary",right?
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Sled Dog on February 25, 2021, 11:45:45 pm
Well, okay, sharing is caring and all that.

I started getting fevers and turning yellow.   And itchy.  The jaundice caused by backed up bilirubin always itches like crazy.

Turned out to be some lump on my bile duct.   Had to go to a specialist before getting the ultrasound.  I decided to not take any Tylenol to drop the fever, so he sent me to the ER with a fever of 104.   That speeded things up quite a bit.

Biopsy was iffy, they weren't sure what it was.   They put a stent in the bile duct to drain the liver, because that was causing the infections and fevers.

I was getting better for a week or so, then getting worse.   Turns out the stent was too short.   Time to pop a new one in.

Then I got better and the surgery was scheduled.   

Oh, wait.  Gotta delay the cancer surgery, the surgeon's wife had a baby girl!  Hooray!

Then they cut me open.   Biliary cancer has something like a 60% two-year mortality rate.  Cool.

Turns out, after the scar from sternum to belly button, that I didn't have biliary cancer, I had ampulary cancer.  The ampulus is the teeny-tiny donut of a muscle that controls flow through the bile duct.   Totally encapsulated by the bile duct, no wandering cancer cells escaping to infect the rest of me. 

No cancer cells in the lymph nodes, the oncologists were bored with me and wanted nothing to do with me.   No chemo for me.

Then the fun started.    The procedure to treat biliary and ampulary cancer is the same, the Whipple procedure, where they surgeon plays "lets rearrange the plumbing" with my intestines.   

So I couldn't eat real food.   They at first forgot and sent me home, then called me back and gave me a permanent IV line in my arm.   And then prescribed this TPN food or whatever its' called, shot straight into my arm.

Full of carbohydrates and stuff.   Prescription mix, of course.

I'm a diabetic.  They forgot to prescribe the insulin to go in the mix.

I was feeling crappy and wasn't checking my blood sugar levels.   My 1528 didn't even break the hospital record.

So i spent another three weeks in the ICU/Rehab units.  Rehab was cool.  The guy on the bed across the room was a 95 year old marine who had been discharged in 1944 because a Jap had stitched some holes in his chest with a machine gun.  And the other guy was a 95 year old Air Corps man who had been made partially deaf by the noise of the machine gun in his B-17 ball turret.   

I lost 95 pounds thanks to that, and because the surgery was effectively a stomach bypass, I've regained just a bit of that and my weight is where the charts say it should have been.

What fun that was.   That was more than five years ago so my surgeon says I am officially "cured".
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: BassWrangler on February 25, 2021, 11:50:28 pm
Well, okay, sharing is caring and all that.

I started getting fevers and turning yellow.   And itchy.  The jaundice caused by backed up bilirubin always itches like crazy.

Turned out to be some lump on my bile duct.   Had to go to a specialist before getting the ultrasound.  I decided to not take any Tylenol to drop the fever, so he sent me to the ER with a fever of 104.   That speeded things up quite a bit.

Biopsy was iffy, they weren't sure what it was.   They put a stent in the bile duct to drain the liver, because that was causing the infections and fevers.

I was getting better for a week or so, then getting worse.   Turns out the stent was too short.   Time to pop a new one in.

Then I got better and the surgery was scheduled.   

Oh, wait.  Gotta delay the cancer surgery, the surgeon's wife had a baby girl!  Hooray!

Then they cut me open.   Biliary cancer has something like a 60% two-year mortality rate.  Cool.

Turns out, after the scar from sternum to belly button, that I didn't have biliary cancer, I had ampulary cancer.  The ampulus is the teeny-tiny donut of a muscle that controls flow through the bile duct.   Totally encapsulated by the bile duct, no wandering cancer cells escaping to infect the rest of me. 

No cancer cells in the lymph nodes, the oncologists were bored with me and wanted nothing to do with me.   No chemo for me.

Then the fun started.    The procedure to treat biliary and ampulary cancer is the same, the Whipple procedure, where they surgeon plays "lets rearrange the plumbing" with my intestines.   

So I couldn't eat real food.   They at first forgot and sent me home, then called me back and gave me a permanent IV line in my arm.   And then prescribed this TPN food or whatever its' called, shot straight into my arm.

Full of carbohydrates and stuff.   Prescription mix, of course.

I'm a diabetic.  They forgot to prescribe the insulin to go in the mix.

I was feeling crappy and wasn't checking my blood sugar levels.   My 1528 didn't even break the hospital record.

So i spent another three weeks in the ICU/Rehab units.  Rehab was cool.  The guy on the bed across the room was a 95 year old marine who had been discharged in 1944 because a Jap had stitched some holes in his chest with a machine gun.  And the other guy was a 95 year old Air Corps man who had been made partially deaf by the noise of the machine gun in his B-17 ball turret.   

I lost 95 pounds thanks to that, and because the surgery was effectively a stomach bypass, I've regained just a bit of that and my weight is where the charts say it should have been.

What fun that was.   That was more than five years ago so my surgeon says I am officially "cured".

I am glad you beat that cancer, and thanks for sharing this.

A good friend of mine was recently diagnosed with Cholangiocarcinoma, which sounds like a similar cancer, although it has a much lower survival rate. For him they are going to do this procedure where they drag a radioactive bead through the channel where the bile ducts are. This basically kills off the cancer, but also kills the liver, so after this they will need to do a liver transplant. He's camped out at an apartment in Minnesota, at the Mayo Clinic which is one of the few places in the US that does this procedure.


Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 25, 2021, 11:53:04 pm
Well, okay, sharing is caring and all that.

I started getting fevers and turning yellow.   And itchy.  The jaundice caused by backed up bilirubin always itches like crazy.

Turned out to be some lump on my bile duct.   Had to go to a specialist before getting the ultrasound.  I decided to not take any Tylenol to drop the fever, so he sent me to the ER with a fever of 104.   That speeded things up quite a bit.

Biopsy was iffy, they weren't sure what it was.   They put a stent in the bile duct to drain the liver, because that was causing the infections and fevers.

I was getting better for a week or so, then getting worse.   Turns out the stent was too short.   Time to pop a new one in.

Then I got better and the surgery was scheduled.   

Oh, wait.  Gotta delay the cancer surgery, the surgeon's wife had a baby girl!  Hooray!

Then they cut me open.   Biliary cancer has something like a 60% two-year mortality rate.  Cool.

Turns out, after the scar from sternum to belly button, that I didn't have biliary cancer, I had ampulary cancer.  The ampulus is the teeny-tiny donut of a muscle that controls flow through the bile duct.   Totally encapsulated by the bile duct, no wandering cancer cells escaping to infect the rest of me. 

No cancer cells in the lymph nodes, the oncologists were bored with me and wanted nothing to do with me.   No chemo for me.

Then the fun started.    The procedure to treat biliary and ampulary cancer is the same, the Whipple procedure, where they surgeon plays "lets rearrange the plumbing" with my intestines.   

So I couldn't eat real food.   They at first forgot and sent me home, then called me back and gave me a permanent IV line in my arm.   And then prescribed this TPN food or whatever its' called, shot straight into my arm.

Full of carbohydrates and stuff.   Prescription mix, of course.

I'm a diabetic.  They forgot to prescribe the insulin to go in the mix.

I was feeling crappy and wasn't checking my blood sugar levels.   My 1528 didn't even break the hospital record.

So i spent another three weeks in the ICU/Rehab units.  Rehab was cool.  The guy on the bed across the room was a 95 year old marine who had been discharged in 1944 because a Jap had stitched some holes in his chest with a machine gun.  And the other guy was a 95 year old Air Corps man who had been made partially deaf by the noise of the machine gun in his B-17 ball turret.   

I lost 95 pounds thanks to that, and because the surgery was effectively a stomach bypass, I've regained just a bit of that and my weight is where the charts say it should have been.

What fun that was.   That was more than five years ago so my surgeon says I am officially "cured".

@Sled Dog

Glad to hear all the suffering lead to a positive result.

I am sincerely hoping that if you get sick again you choose another hospital?
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Sled Dog on February 26, 2021, 12:01:38 am
@Sled Dog

Glad to hear all the suffering lead to a positive result.

I am sincerely hoping that if you get sick again you choose another hospital?

Actually, that's one of the best hospitals in the area.    Both my kids were born there, even.

Sometimes shit happens and this wasn't an intentional "let's mess with him" incident.

The reality is that in the aftermath of the surgery I feel better now than I have in a long time.  I was overweight and now I'm not. 

The insurance covered all but the 10K co-pay...so they paid some 200k in bills.

My questions are going to be for when I retire...as an honorably discharged Navy veteran, would the VA cover my routine maintenance?  Especially the pills I take because of the re-piping they did to me?   We'll see.

I read some of this this thread and you sound like you've been through hell, and that's just not right.   
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 26, 2021, 12:19:19 am
Actually, that's one of the best hospitals in the area.    Both my kids were born there, even.

Sometimes shit happens and this wasn't an intentional "let's mess with him" incident.

The reality is that in the aftermath of the surgery I feel better now than I have in a long time.  I was overweight and now I'm not. 

The insurance covered all but the 10K co-pay...so they paid some 200k in bills.

My questions are going to be for when I retire...as an honorably discharged Navy veteran, would the VA cover my routine maintenance?  Especially the pills I take because of the re-piping they did to me?   We'll see.

I read some of this this thread and you sound like you've been through hell, and that's just not right.

@Sled Dog

Don't count on it. I am a 100 percent service-connected disabled VN vet,and I have trouble getting the VA to pay for my hospital and ER bills. I even live over 50 miles away from the closest VA hospital and a trip there would involved crossing a long bridge tunnel that doesn't allow ambulances,which means I would have to hire a boat or a helicopter to get to it,and the freaking VA is still refusing to pay my local Hospital ER and other bills by telling me I should have gone to the VA hospital for treatment.

And one of those ER trips was for flesh-eating bacteria and ended up with my receiving emergency surgery and being in intensive care for 2 weeks. The surgeon later told me if I had gotten there a half-hour later I would have died,and there would have been nothing he could have done to save me.

My choice was to go to the local hospital,a 35 minute drive,or to the VA hospital,a 1 hour plus drive,and they wouldn't even have been able to do the surgery. In cases like mine,they would have just transferred me to a local hospital up there,wasting more time and insuring I would have died.

If you have read my posts,you have read about all the trouble I have had with an infected leg the last 6 months or so,and today is the FIRST time I was able to go to a local hospital for treatment with the VA setting up the appointment and agreeing to pay the bills. I have paid hundreds of dollars out of pocket to a local doc that recently opened shop here,and owe thousands of dollars at the same hospital and to doctors there for previous leg treatments,and the VA still hasn't paid a dime because I didn't get approval before I received the treatment.

Try to buy geezer insurance by joining some group like AARP before you retire. You will still have to pay out of pocket,but they will cover most of it.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Victoria33 on February 26, 2021, 02:04:19 am
@sleddog
@sneaky pete

I have Medicare and through AARP, UnitedHealthCare, Plan "J", the best plan they have.  I pay nothing to any doctor.  I have Blue Cross for medicines and I take a bunch of them.  I pay a lot but if I did not have Blue Cross, I could not buy the medicines - some of them are over $1,000 with no insurance.

When I got insurance to go with Medicare, I looked for a plan that would not go up the older I got.  That is why I have the UnitedHealthCare, Plan "J" from AARP.  They will not raise the cost of the insurance as I get older.  What I pay now is it.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 26, 2021, 02:21:28 am
Sounds like you made some good choices.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on February 26, 2021, 02:33:45 am
Thanks for sharing. I'm so sorry for suffering that might have been prevented. So frustrating.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: jafo2010 on February 27, 2021, 09:14:18 am
I am saddened any of you have to suffer because of incompetent healthcare operations.  There is no excuse.  The good news, if the Dems have their way, everyone will have Medicare(all my personal friends on Medicare hate it).  I'm being sarcastic.  Things will continue to worsen healthcare wise because our politicians are not worth a good BM!

sneakypete...if you have a phone, I would love to speak to you and share more of what I know.  If interested in talking, send me a personal note with your phone number.  I know if you do what I suggest, I can help you.  Definitively so.  I am talking about reducing or eliminating pain, without taking substances that screw with your mental/physical functioning.

And I believe it was SledDog that had stents installed.  I suspect the inner diameter of those stents is very small.  I highly recommend you start using only distilled water for drinking, for water, coffee, tea and frozen juices.  Stents almost guarantee future blockages, and distilled water will help that not to happen. 

Sadly, American medicine is grossly deficient because of AMA procedures that hamstring physicians.  And anything they do is further hampered by insurance companies that work exceptionally hard NOT to pay claims.  I have spent over 20 years in healthcare, being a director for two Blues plans, and consulting to a dozen others, as well as consulting to different state government healthcare operations. 

I promise all of you, if you are willing to take the time, I can tell you things that will help your situation.  Cost you nothing to listen.  I have helped many through the years.  Those with cancer need not suffer with pain, need not take pain killers that leave you loopy. And for those that are suffering from nausea with chemo, there is a simple solution for that too.  I am talking about solutions that do not entail taking pharma!  Doctors will not advise you as such, why?  Because largely they do not make any money and the AMA disapproves of anything that does not make money.  Really that simple.

I have been drinking distilled water since 1979.  I will never have a blocked artery, never a kidney or gall stone, no arthritis with deposits, no cataracts in the eyes, and with a recent study that indicated that for Alzheimer patients, a particular protein is being found built up in the brain, I am fairly certain I will never suffer from Alzheimers.  What distilled water does for the body is keep thing that do not belong out of the body.  No buildup of things that do not belong.  Anyone that believes that tap water is safe to consume, think again.  It is not a Jim Jones cocktail, but I believe it will cause cancer and other maladies and shorten the average person's life by ten years.

100% of the people that have taken shark cartilage for cancer have benefited that I know have followed my advice.  100%!  I also recommend one particular brand, based on research done by a friend.  You can get online and search to see who sells it for the best price.  There is much to know about it to take it properly.

Please feel free to call me.  Write me a personal message and call, or I will call you.  I hate to see anyone suffer.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 27, 2021, 11:53:33 am

I have been drinking distilled water since 1979. 

@jafo2010

I started using it for cooking and coffee about 5 years ago.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Gefn on February 27, 2021, 01:10:16 pm
I don’t know about bills. I know that when @To-Whose-Benefit? passed, his brother sold his most prized possession, his Les Paul guitar to pay off remaining bills and other expenses.

That was so sad. And I would have dipped into my 401K to help, so that guitar could have stayed in the family, who knows, maybe his niece or nephew would have a child that would like music and want it. And remember their amazing and cool great uncle too.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on November 16, 2021, 02:30:07 am
See my update on the health board.
Title: Re: Freed from the hospital once again today
Post by: sneakypete on December 07, 2021, 12:22:03 am
Well,I have done it again. Managed to escape from the clutches of the hospital.

Pay attention. Some of this nonsense may save your life.

Ok,was feeling kinda under the weather for a week or so. Not really bad,and not in any pain,I just had no appetite at all,and due to not eating for a week (obvious hint something was wrong that I obviously overlooked),was very weak. I knew I had a problem when suddenly even coffee had no appeal. If you knew me personally,you would know THAT was a hint things were wrong that I should have NEVER ignored.

So,I am in the house,watching teebee,and fading in and out of consciousness. I was thinking that was due to just not having been able to get much/any sleep. I sometimes go through that,so I pretty much ignored that one,too.

So,I am VERY weak (should NEVER be ignored) and making sure I move carefully and have something to grab hold of when I move. (Duhhhhhh!)

Suddenly I am very hot instead of being a little chilled,so I get off the couch and move to cut on the overhead fan to cool down a little. Suddenly I am wondering "WHY is the floor 3 inches from my nose?".

An unknown time later I am wondering "WHY is my nose in a puddle of blood,and WHY am I laying face down on the floor?"

Being a clever man,I then figured out something was wrong,so I VERY carefully used a bookcase to hold on to in order to get to my knees,and then managed to pull myself upright.
Using the bookcase and a stand,I managed to make it back to the couch,where I sat down and pondered the situation.

"Was I in pain?"  Nope.

"Why am I fading in and out of consciousness?"  Good question!

"What do I need to do about this? Should I call an ambulance at midnight,or should I just lay down and go to sleep and call the ambulance in the morning if I am still having problems"

BEST QUESTION OF ALL!

Looked at my watch,saw it was midnight,and just said "Screw it,I'm going to the hospital",and called my ex,whose oldest daughter is a MD,and told her to have her daughter call the hospital and tell them I am coming and to call an ambulance to come pick me up. BTW,the local hospital is about 60 miles away.

My ex then called her sister,who lives closer to me,and told the sister to come help me get ready. Which she did. I gave her a key to the house so she could feed and water the cats for me,she helped me get dressed,and she helped me to the ambulance when it got here.

Got to the ER,and later on was told I was literally dying when I came in.  I was bleeding internally due to a tumor on my intestines and my stomach was filling with my blood. Which is why I was both weak and unable to eat or drink anything.

The ER nurse told me I was 3 quarts low on blood,and my body had stopped producing it.

They immediately put me on blood transfusions and did a few other things I can't remember right now because the pain meds  are kicking in.

The really tricky part about all this is at no time was I ever in any pain,and when I wasn't fading out mentally,I was as alert as ever. I did NOT have even the slightest hint I was in REAL trouble because there was no pain.

What convinced me to go ahead and call for help was being confused one moment,and mentally alert the next.

During one of my mentally alert moments it DID occur to me that I MIGHT be dying,but since there was no pain or discomfort involved,and given my age and other physical problems,I was REALLY tempted to just let nature take over and do it's "thing",IF that was what was happening. After all,dying with no pain and by just going to sleep can seem more like a positive thing than a bad thing when you are used to dealing with pain every day of your life.

But......,I am just not a quitter by nature,so I made the phone call and am now glad that I did.

The surgeon told me I had a bleeding ulcer/tumor on my intestine,and it had to heal itself,which it did due to the anti-biotics he had injected or shoveled into my mouth. Or mostly healed itself. The tumor/ulcer is still there,it's just not bleeding any longer,and my body is once again producing blood.

He took a sample from the tumor and sent it off for a biopsy. I guess I will get the report in a week or so,but judging by the huge smile on the surgeon's face when he was telling me this,it seems like he thinks he won a battle he had not expected to win.

I guess the moral of this story is to NOT just assume you are in no danger because there is no pain,and there is no bleeding that you can see.  All my bleeding was internal,and my blood was somehow mixing with the feces and urine in my body,and my body was being poisoned by it.

You can't always see or feel the danger,and you can NOT rely on pain as an indicator that you are in trouble. Which honestly surprised the hell out of me.

When in ANY doubt at all,shout for help. Trust me on this one.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Kamaji on December 07, 2021, 12:31:48 am
Well,I have done it again. Managed to escape from the clutches of the hospital.

Pay attention. Some of this nonsense may save your life.

Ok,was feeling kinda under the weather for a week or so. Not really bad,and not in any pain,I just had no appetite at all,and due to not eating for a week (obvious hint something was wrong that I obviously overlooked),was very weak. I knew I had a problem when suddenly even coffee had no appeal. If you knew me personally,you would know THAT was a hint things were wrong that I should have NEVER ignored.

So,I am in the house,watching teebee,and fading in and out of consciousness. I was thinking that was due to just not having been able to get much/any sleep. I sometimes go through that,so I pretty much ignored that one,too.

So,I am VERY weak (should NEVER be ignored) and making sure I move carefully and have something to grab hold of when I move. (Duhhhhhh!)

Suddenly I am very hot instead of being a little chilled,so I get off the couch and move to cut on the overhead fan to cool down a little. Suddenly I am wondering "WHY is the floor 3 inches from my nose?".

An unknown time later I am wondering "WHY is my nose in a puddle of blood,and WHY am I laying face down on the floor?"

Being a clever man,I then figured out something was wrong,so I VERY carefully used a bookcase to hold on to in order to get to my knees,and then managed to pull myself upright.
Using the bookcase and a stand,I managed to make it back to the couch,where I sat down and pondered the situation.

"Was I in pain?"  Nope.

"Why am I fading in and out of consciousness?"  Good question!

"What do I need to do about this? Should I call an ambulance at midnight,or should I just lay down and go to sleep and call the ambulance in the morning if I am still having problems"

BEST QUESTION OF ALL!

Looked at my watch,saw it was midnight,and just said "Screw it,I'm going to the hospital",and called my ex,whose oldest daughter is a MD,and told her to have her daughter call the hospital and tell them I am coming and to call an ambulance to come pick me up. BTW,the local hospital is about 60 miles away.

My ex then called her sister,who lives closer to me,and told the sister to come help me get ready. Which she did. I gave her a key to the house so she could feed and water the cats for me,she helped me get dressed,and she helped me to the ambulance when it got here.

Got to the ER,and later on was told I was literally dying when I came in.  I was bleeding internally due to a tumor on my intestines and my stomach was filling with my blood. Which is why I was both weak and unable to eat or drink anything.

The ER nurse told me I was 3 quarts low on blood,and my body had stopped producing it.

They immediately put me on blood transfusions and did a few other things I can't remember right now because the pain meds  are kicking in.

The really tricky part about all this is at no time was I ever in any pain,and when I wasn't fading out mentally,I was as alert as ever. I did NOT have even the slightest hint I was in REAL trouble because there was no pain.

What convinced me to go ahead and call for help was being confused one moment,and mentally alert the next.

During one of my mentally alert moments it DID occur to me that I MIGHT be dying,but since there was no pain or discomfort involved,and given my age and other physical problems,I was REALLY tempted to just let nature take over and do it's "thing",IF that was what was happening. After all,dying with no pain and by just going to sleep can seem more like a positive thing than a bad thing when you are used to dealing with pain every day of your life.

But......,I am just not a quitter by nature,so I made the phone call and am now glad that I did.

The surgeon told me I had a bleeding ulcer/tumor on my intestine,and it had to heal itself,which it did due to the anti-biotics he had injected or shoveled into my mouth. Or mostly healed itself. The tumor/ulcer is still there,it's just not bleeding any longer,and my body is once again producing blood.

He took a sample from the tumor and sent it off for a biopsy. I guess I will get the report in a week or so,but judging by the huge smile on the surgeon's face when he was telling me this,it seems like he thinks he won a battle he had not expected to win.

I guess the moral of this story is to NOT just assume you are in no danger because there is no pain,and there is no bleeding that you can see.  All my bleeding was internal,and my blood was somehow mixing with the feces and urine in my body,and my body was being poisoned by it.

You can't always see or feel the danger,and you can NOT rely on pain as an indicator that you are in trouble. Which honestly surprised the hell out of me.

When in ANY doubt at all,shout for help. Trust me on this one.


@sneakypete

Wow.  Just Wow.  Thank God you're still with us. 
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Smokin Joe on December 07, 2021, 12:59:09 am
@sneakypete Wow, you dodged another bullet. Glad you are still with us!
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Right_in_Virginia on December 07, 2021, 01:28:35 am
You're officially my hero @sneakypete ---- 2nd only to your incredible (and exhausted) guardian angel.

Very glad you're back.   :bighug:
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on December 07, 2021, 01:39:11 am
Incredible story and one that we all need to read and heed your words.

I am very glad that you are back @sneakypete !!!  happy77 happy77
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Kamaji on December 07, 2021, 02:07:43 am
Going in and out of alertness/consciousness for no apparent reason is a big warning sign.  An acquaintance of mine went to the hospital several years ago because he was having transient episodes of wonkiness and loss of focus, and it turned out he had stage iv cancer that had metastasized and gotten into his brain.  He would probably be dead if he hadn’t needed his wife’s warnings for get himself checked out.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on December 07, 2021, 02:14:48 am
I want to thank you all for your kind thoughts,but I didn't post the post for sympathy. I posted it as a warning shot across the bow for any who might be as pig-headed as I am.

What I SHOULD have done was gone to see the doc the first week I wasn't able to eat.

Stoopid,stoopid,stoopid!

And it damn near cost me my life.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: berdie on December 07, 2021, 09:32:03 pm
I want to thank you all for your kind thoughts,but I didn't post the post for sympathy. I posted it as a warning shot across the bow for any who might be as pig-headed as I am.

What I SHOULD have done was gone to see the doc the first week I wasn't able to eat.

Stoopid,stoopid,stoopid!

And it damn near cost me my life.



FWIW..@sneakypete...I don't think you are stoopid or pigheaded.

I totally understand how symptoms are discounted when one has been ill. Been there, done that.

Hang in! You are tough.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on December 09, 2021, 10:30:12 pm
I'm so grateful you're still among us, @sneakypete

Like he said, if something's "off," have it checked out - just like our future First Lady here:
https://twitter.com/FLCaseyDeSantis/status/1468953073552814088
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on December 11, 2021, 12:33:53 am
I'm so grateful you're still among us, @sneakypete

Like he said, if something's "off," have it checked out - just like our future First Lady here:
https://twitter.com/FLCaseyDeSantis/status/1468953073552814088

@mountaineer

Don't worry about that. I just got out of the hospital again tonight. The second night I was out my stomach started to burn again,and that is what it was doing when the tumor in my stomach was leaking blood.

This sort of thing is VERY dangerous because it COULD be just minor indigestion,and there is no real pain involved when dying from it. You just feel sleepy.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on April 03, 2022, 11:30:51 pm
jafo20210 wrote: "I have been drinking distilled water since 1979. "

AND: "100% of the people that have taken shark cartilage for cancer have benefited that I know have followed my advice.  100%! "

I am with you on both of the above! Getting ready to post a health update that might surprise some people as much as it surprised me. Going to do a "stand alone" post so it doesn't get lost in the mass of posts.


Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on April 04, 2022, 12:10:26 am

@sneakypete

Wow.  Just Wow.  Thank God you're still with us.

@Kamaji

IF,by chance,some higher power offers you a choice between being lucky or being smart,choose lucky.

Take my word on this one.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on April 04, 2022, 12:11:11 am
@sneakypete Wow, you dodged another bullet. Glad you are still with us!

@Smokin Joe

Thanks. I somehow missed the replies on this thread until now.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on April 04, 2022, 12:56:43 am
@jafo2010

jafo20210 wrote: "I have been drinking distilled water since 1979. "

AND: "100% of the people that have taken shark cartilage for cancer have benefited that I know have followed my advice.  100%! "

++++++++++++++++++++++++++++++++++++++++++++++++++++++

He ain't justa woofing,either! Not personally sure about the distilled water,but I have been drinking it and making coffee with it for several years now.

As for the pills,I am no doctor or scientist,but I CAN tell you that if they don't work,they sure have ME fooled! Between them and the other pills,I am actually feeling pretty damn good!

Now,if I can just find a pill for chemo brain,I'll be back to what passes for normal for me.

This is sorta the Part B addition to the VERY long cancer update post I wrote,and somehow lost. Might try to recreate it later after resting.

Ok,my cancer surgeon told me that I had Stage 4 Lymphoma,and while she didn't say it was hopeless,she wasn't tap dancing around the office,either.

After taking the massive doses of chemo and radiation that turned me into a "sharper than most turnips" intellectual,things didn't seem to be working for me when I went in for the montly update.

She really looked sad as she told me the PET Scans hadn't been looking good,and that I was maxed out on chemo and radiation.

So she then suggested I try some new "cancer pills" that had just recently been given rush approval and put on the market. She told me that the downside was the pills made some people so sick they said they would rather die from cancer than keep taking them.

Which struck me as an odd thing for a doctor to say,but I guess she figured I was already sick enough that adding to it was counterproductive.

Anyhow,I told her "Hell,yea,I'll try them! It ain't like I have anything to lose,and if they make me that sick,I'll  just quit taking them!"

Here is where the sorta "good news" comes into play. Chemo had fried me memory to the point I had forgotten all about the new pill discussion we had by the time they came in,and just started taking them. I was shocked when I went in for the checkup a month later and she asked me if they were making me sick. The truth is I started feeling better almost immediately.

Went in for the monthy PET scan and then for the monthly check-up with her a week or so after 2 months of taking them,and damned if the cancer hadn't disappeared!

Surprised her so much she immediately scheduled a back up PET scan for me the next week.

That one came back negative,too.

I can NOT say I have beaten the cancer. You have to be cancer-free for  5 years to make that claim.

Truth to tell,I can't even claim the cancer pills she gave me are what did the trick,but I DO have my suspicions!

Here is the trade name and instructions for taking them. This is a prescription drug,so you will have to get your doc to write you a prescription for it. I supposed it comes in larger or smaller doses,but this is what was prescribed for me.

Brukinsa Zanubrutinib caps

80 Mg 

2 pills twice a day. With or without food

I can't remember what they cost,and it will no doubt vary  by area and pharmacy,but I DO know they are insanely cheap when you consider they could very well save your life.

+++++++++++++++++++++++++++++++++++++++++++++++++++

Ok,now getting back to JAFO2010 and the pills he recommends. Here is where I buy mine from the web.

https://www.swansonvitamins.com/checkout/register.guest.html

CARTILADE (Shark Cartilage) for cancer


The cost for one big bottle is $55.27,and you take one capsule twice a day.

I ordered two bottles at first,and had not finished the first one before I got the "no cancer on your PET Scan" report.

There may be web sites that sell it cheaper,so you can look around now that you have the trade name.
   

Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on April 04, 2022, 01:00:10 am
@jafo2010

jafo20210 wrote: "I have been drinking distilled water since 1979. "

AND: "100% of the people that have taken shark cartilage for cancer have benefited that I know have followed my advice.  100%! "

++++++++++++++++++++++++++++++++++++++++++++++++++++++

He ain't justa woofing,either.

This is sorta the Part B addition to the VERY long cancer update post I wrote,and somehow lost. Might try to recreate it later after resting.

Ok,my cancer surgeon told me that I had Stage 4 Lymphoma,and while she didn't say it was hopeless,she wasn't tap dancing around the office,either.

After taking the massive doses of chemo and radiation that turned me into a "sharper than most turnips" intellectual,things didn't seem to be working for me when I went in for the montly update.

She really looked sad as she told me the PET Scans hadn't been looking good,and that I was maxed out on chemo and radiation.

So she then suggested I try some new "cancer pills" that had just recently been given rush approval and put on the market. She told me that the downside was the pills made some people so sick they said they would rather die from cancer than keep taking them.

Which struck me as an odd thing for a doctor to say,but I guess she figured I was already sick enough that adding to it was counterproductive.

Anyhow,I told her "Hell,yea,I'll try them! It ain't like I have anything to lose,and if they make me that sick,I'll  just quit taking them!"

Here is where the sorta "good news" comes into play. Chemo had fried me memory to the point I had forgotten all about the new pill discussion we had by the time they came in,and just started taking them. I was shocked when I went in for the checkup a month later and she asked me if they were making me sick. The truth is I started feeling better almost immediately.

Went in for the monthy PET scan and then for the monthly check-up with her a week or so after 2 months of taking them,and damned if the cancer hadn't disappeared!

Surprised her so much she immediately scheduled a back up PET scan for me the next week.

That one came back negative,too.

I can NOT say I have beaten the cancer. You have to be cancer-free for  5 years to make that claim.

Truth to tell,I can't even claim the cancer pills she gave me are what did the trick,but I DO have my suspicions!

Here is the trade name and instructions for taking them. This is a prescription drug,so you will have to get your doc to write you a prescription for it. I supposed it comes in larger or smaller doses,but this is what was prescribed for me.

Brukinsa Zanubrutinib caps

80 Mg 

2 pills twice a day. With or without food

I can't remember what they cost,and it will no doubt vary  by area and pharmacy,but I DO know they are insanely cheap when you consider they could very well save your life.

+++++++++++++++++++++++++++++++++++++++++++++++++++

Ok,now getting back to JAFO2010 and the pills he recommends. Here is where I buy mine from the web.

https://www.swansonvitamins.com/checkout/register.guest.html

CARTILADE (Shark Cartilage) for cancer


The cost for one big bottle is $55.27,and you take one capsule twice a day.

I ordered two bottles at first,and had not finished the first one before I got the "no cancer on your PET Scan" report.

There may be web sites that sell it cheaper,so you can look around now that you have the trade name.

I have heard of shark cartilage but I am not truly all familiar with it.  Does it rebuild cells and/or eradicate cancer and tumors??
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on April 04, 2022, 01:08:30 am
I have heard of shark cartilage but I am not truly all familiar with it.  Does it rebuild cells and/or eradicate cancer and tumors??

@libertybele

Beats the hell out of ME!

All I can tell you is that a month or two (chemo brain and time don't play well together) after taking them and the doc prescribed pills,there is no cancer to be found on my PET scans.

I can also tell you that I have had a few people out here in "flesh and blood land" tell me the same thing JAFO2010 and I are telling you here on TBR. I took the pills and the cancer just seemed to disappear and I didn't even vomit a single time. Or even have a queasy stomach.

AND......,if you have Stage 4 cancer,what do you have to lose by spending 100 bucks or so on both pills and trying them?

BTW,I do NOT get even one thin dime for these recommendations. Nor do I know anyone involved in any way with the manufacturing or sales of either.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on April 04, 2022, 01:16:06 am
@libertybele

Beats the hell out of ME!

All I can tell you is that a month or two (chemo brain and time don't play well together) after taking them and the doc prescribed pills,there is no cancer to be found on my PET scans.

I can also tell you that I have had a few people out here in "flesh and blood land" tell me the same thing JAFO2010 and I are telling you here on TBR. I took the pills and the cancer just seemed to disappear and I didn't even vomit a single time. Or even have a queasy stomach.

AND......,if you have Stage 4 cancer,what do you have to lose by spending 100 bucks or so on both pills and trying them?

BTW,I do NOT get even one thin dime for these recommendations. Nor do I know anyone involved in any way with the manufacturing or sales of either.

I'm only asking because I have rare cysts on the nerve roots on my spinal cord and they cannot be removed by surgery.  I guess I'll try shark cartilage.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on April 04, 2022, 01:20:55 am
I'm only asking because I have rare cysts on the nerve roots on my spinal cord and they cannot be removed by surgery.  I guess I'll try shark cartilage.

@libertybele

I don't have the first clue if they will work for you or not because that isn't cancer,but the pills are cheap enough to give them a shot for 2 months or so,and then see if there is any improvement.

And I do wish you all the luck in the world on this.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on April 04, 2022, 01:27:08 am
@libertybele

I don't have the first clue if they will work for you or not because that isn't cancer,but the pills are cheap enough to give them a shot for 2 months or so,and then see if there is any improvement.

And I do wish you all the luck in the world on this.

Thank you @sneakypete
Title: Re: Brukinsa Zanubrutinib UPDATE!
Post by: sneakypete on April 04, 2022, 04:51:06 pm
If any of you have cancer and no luck with treating it,forget about buying these pills on the web.

Cheapest I could find a bottle of 180 was $13,6xx.00. Yeah,NOT a typo. There was only two places that had it for 13.5 grand,and it was 14.5 or more everywhere else. I THINK one of the 13.5 grand places was Wal-Mart.

IF you can't get your cancer doc to furnish them to you and have 13+ grand to spend,be aware that there is no way in hell your local Wal-Mart will have them in stock. Be prepared to wait for them to order and get them in,and most likely,you will have to pay in advance to get them to order it.

Best bet is to try your cancer doc. Mine gave me the first bottle for free because most likely the clinic she works for gets them for free from the manufacturer so they can be used and the word spread that they work. A tax write-off for the manufacturer,and it helps them get on the good side of clinics that will spread the word about them and create a demand.

Not sure if I am going to have any luck or not, but I plan on asking my cancer doc if she can get me more next time I see her. Since I can't afford 13-14 grand for a 90 day supply of pills,it is my only option other than to just quit taking them and see if the cancer returns.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on September 17, 2022, 02:36:30 am
bookmark

@Victoria33

How do you bookmark a thread?

BTW,I tried to send you a PM,but you have me blocked for some reason.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Texas Yellow Rose on September 17, 2022, 03:07:22 am
@Victoria33

How do you bookmark a thread?

BTW,I tried to send you a PM,but you have me blocked for some reason.
:bkmk:
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on September 17, 2022, 04:48:28 am
:bkmk:

@Texas Yellow Rose

Ok,so where do I find that icon,and how do I save it to my TBR page?
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Texas Yellow Rose on September 17, 2022, 12:01:00 pm
@Texas Yellow Rose

Ok,so where do I find that icon,and how do I save it to my TBR page?

When making a comment enter "[more]" right over the box you will find the bookmark with the icon. Insert it just like making a comment.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on September 17, 2022, 10:09:42 pm
When making a comment enter "[more]" right over the box you will find the bookmark with the icon. Insert it just like making a comment.

@Texas Yellow Rose

Thank you!

Not trying to look as ignurt as I actually am,can I assume I do this by dragging it down?
Title: Re: Brukinsa Zanubrutinib UPDATE!
Post by: libertybele on September 17, 2022, 10:13:48 pm
If any of you have cancer and no luck with treating it,forget about buying these pills on the web.

Cheapest I could find a bottle of 180 was $13,6xx.00. Yeah,NOT a typo. There was only two places that had it for 13.5 grand,and it was 14.5 or more everywhere else. I THINK one of the 13.5 grand places was Wal-Mart.

IF you can't get your cancer doc to furnish them to you and have 13+ grand to spend,be aware that there is no way in hell your local Wal-Mart will have them in stock. Be prepared to wait for them to order and get them in,and most likely,you will have to pay in advance to get them to order it.

Best bet is to try your cancer doc. Mine gave me the first bottle for free because most likely the clinic she works for gets them for free from the manufacturer so they can be used and the word spread that they work. A tax write-off for the manufacturer,and it helps them get on the good side of clinics that will spread the word about them and create a demand.

Not sure if I am going to have any luck or not, but I plan on asking my cancer doc if she can get me more next time I see her. Since I can't afford 13-14 grand for a 90 day supply of pills,it is my only option other than to just quit taking them and see if the cancer returns.

@sneakypete  I looked up Brukinsa Zanubrutinib and it is specifically made to target lymphoma.
Title: Re: Brukinsa Zanubrutinib UPDATE!
Post by: sneakypete on September 17, 2022, 10:48:32 pm
@sneakypete  I looked up Brukinsa Zanubrutinib and it is specifically made to target lymphoma.

@libertybele

That makes sense,since I was diagnosed as having Stage 4 Lymphoma.

Had a cancer doc tell me last week that it is "kind of a form of chemotherapy".

What I know for a fact is that it helped me test negative for cancer after being diagnosed as being "untreatable" after the traditional methods didn't work.
Title: Re: Brukinsa Zanubrutinib UPDATE!
Post by: sneakypete on September 17, 2022, 10:52:12 pm
@sneakypete  I looked up Brukinsa Zanubrutinib and it is specifically made to target lymphoma.

@libertybele
 
BTW,I had a slightly more lucid moment today and remembered the cheapest places to buy it if you don't have insurance are a Wal-Mart pharmacy,or a Food Lion pharmacy.
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Texas Yellow Rose on September 17, 2022, 11:41:15 pm
@Texas Yellow Rose

Thank you!

Not trying to look as ignurt as I actually am,can I assume I do this by dragging it down?

No, just click on it and it will automatically go to you comment ... then post.  If you want to find it later, go to your profile and click "show posts".
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: sneakypete on September 18, 2022, 12:32:21 am
No, just click on it and it will automatically go to you comment ... then post.  If you want to find it later, go to your profile and click "show posts".

@Texas Yellow Rose

THANK YOU!

I have been trying to copy and paste,and then trying to drag them down in to place,and had no idea how I was going wrong.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Bigun on February 12, 2023, 10:01:59 pm
A word of warning; One of my neighbors (Larry) will have major surgery on the right side of his face on the 20th followed, I'm sure, by several reconstructive surgeries all of which could have been avoided had he not ignored the little skin cancer that developed on the top of his right ear sometime back.

All of that to say this; If something shows up on your body that shouldn't be there, or just doesn't feel right, GET IT CHECKED OUT! 
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on February 12, 2023, 10:26:31 pm
That's right, Bigun. I knew a judge who had just a tiny pimple-like bump on his leg. By the time he had it checked out, it was too late for treatment to be effective.

In the midst of my sister's current cancer battle, I'm not ignoring any ache or pain. I don't care if anyone thinks I'm a hypochondriac.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Bigun on February 12, 2023, 10:31:08 pm
That's right, Bigun. I knew a judge who had just a tiny pimple-like bump on his leg. By the time he had it checked out, it was too late for treatment to be effective.

In the midst of my sister's current cancer battle, I'm not ignoring any ache or pain. I don't care if anyone thinks I'm a hypochondriac.

 888high58888
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 13, 2023, 12:36:00 am
A word of warning; One of my neighbors (Larry) will have major surgery on the right side of his face on the 20th followed, I'm sure, by several reconstructive surgeries all of which could have been avoided had he not ignored the little skin cancer that developed on the top of his right ear sometime back.

All of that to say this; If something shows up on your body that shouldn't be there, or just doesn't feel right, GET IT CHECKED OUT!


@Bigun

You are kidding,right?

If I stopped to do that,I might as well go ahead and sell everything I own because the rest of my life will be spent in a hospital.

I am sure there MUST be something that looks and performs like it is supposed to ,but I can't begin to guess what it would be.

It damn sure ain't my short-term memory. Chemo set fire to that.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on June 20, 2023, 10:57:40 pm
If you've seen the prayer thread, you'll know that my sister has been dealing with stage 3 ovarian cancer since January. She had 8 chemotherapy sessions, extensive surgery, and now has completed three more chemo sessions. She's doing pretty well, but the chemo is knocking her on her butt: pain she compares to fibromyalgia, nausea, loss of appetite, etc.

I finally broke down and suggested medical mj, which is legal in her state. I should point out that I have a deep aversion to marijuana, thanks to the behavior of another sibling, but I do understand that it can reduce nausea and increase the appetite in cases like hers. I doubt she's ever tried it, and I know I haven't. But she's willing to look into it.

Any personal experiences (not just the casual toker experiences, I mean with regard to dealing with chemo side effects)?
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: bigheadfred on June 20, 2023, 11:18:35 pm
If you've seen the prayer thread, you'll know that my sister has been dealing with stage 3 ovarian cancer since January. She had 8 chemotherapy sessions, extensive surgery, and now has completed three more chemo sessions. She's doing pretty well, but the chemo is knocking her on her butt: pain she compares to fibromyalgia, nausea, loss of appetite, etc.

I finally broke down and suggested medical mj, which is legal in her state. I should point out that I have a deep aversion to marijuana, thanks to the behavior of another sibling, but I do understand that it can reduce nausea and increase the appetite in cases like hers. I doubt she's ever tried it, and I know I haven't. But she's willing to look into it.

Any personal experiences (not just the casual toker experiences, I mean with regard to dealing with chemo side effects)?

Has your sister looked into CBDs? I don't have any personal experience but I've read they an be effective. She may be able to get the benefits without the high. @mountaineer
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on June 20, 2023, 11:53:54 pm
If you've seen the prayer thread, you'll know that my sister has been dealing with stage 3 ovarian cancer since January. She had 8 chemotherapy sessions, extensive surgery, and now has completed three more chemo sessions. She's doing pretty well, but the chemo is knocking her on her butt: pain she compares to fibromyalgia, nausea, loss of appetite, etc.

I finally broke down and suggested medical mj, which is legal in her state. I should point out that I have a deep aversion to marijuana, thanks to the behavior of another sibling, but I do understand that it can reduce nausea and increase the appetite in cases like hers. I doubt she's ever tried it, and I know I haven't. But she's willing to look into it.

Any personal experiences (not just the casual toker experiences, I mean with regard to dealing with chemo side effects)?



@mountaineer

Well,even IF I still toked weed I wouldn't be able to tell you because chemo wiped out my short-term memory. To the point I sometimes start to talk with a long-time friend,and can't remember their name.

If it weren't for spell-check,I wouldn't even be able to post here. Even when I do post,I always have to go back and read each sentence one at a time to remember what I am posting about.

Chemo and radiation ain't for sissies!

I WILL tell you that toking a little weed has NEVER in all of reported time ever been known  to harm  anyone,and that IF an adult can get over the paranoia of smoking weed (or eathing hash brownies) it can only help.

No,it won't cure anything,but will help  to calm you  down,which IS good for your blood pressure and probably for your piece of mind.

If you live in a state where it is legal,you owe it to yourself to try it,but I recommend trying it in the company of someone you  know and trust who has smoked it for a while. If you start to panic,they can  calm you down.

BTW,the only reason I quit smoking weed is because I moved to a new area and didn't know anyone else that smoked,and the few people I offered to share a joint with acted terrified. Since for ME,smoking weed was a social thing,I had no interest in smoking it by myself. Now I honestly don't even know where I could buy any. Or care. Have too much trouble just breathing to be smoking anything.

BTW,I THINK I might have been maybe 12 or 13 years old the first time I toked up,and it was at a party.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on June 21, 2023, 12:00:36 am
Has your sister looked into CBDs? I don't have any personal experience but I've read they an be effective. She may be able to get the benefits without the high. @mountaineer

@bigheadfred

@mountaineer

Fred,if she has been blasted with chemo and radiation like I was,she won't be able to remember who to ask or what needs to be asked. Seriously.

She needs to have her sister or someone else with an actual memory take notes on what should be tried and maybe even monitor her while she tries it.

I don't smoke anything anymore,but I have to admit if I knew where I could buy a legal hash-brownie,I'd have a few laying around.

Ok,I would have ONE laying around. It never took much  for me to catch a buzz,even on cheap 10 bucks a bag pot back in the 70's. Just one hash brownie would probably last me a week.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on June 21, 2023, 01:20:51 am
The state has a website to apply for a medical marijuana card. If she goes through the steps, it looks pretty simple.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on June 21, 2023, 12:54:35 pm
Oops, it just occurred to me that she also has a concealed carry permit. I hope the ridiculous peoples' republic of of Pennsylvania wouldn't give her a marijuana card, only to take her carry permit away from her.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: jafo2010 on September 24, 2023, 08:21:11 am
Quote
LibertyBelle...
I have heard of shark cartilage but I am not truly all familiar with it.  Does it rebuild cells and/or eradicate cancer and tumors??

Sad to say, I just saw your comment.  Haven't been back on this board for some time.  I apologize.

Shark cartilage is very effective, both for cancer and benign tumors.

However, based on what I read from sneakypete, he is NOT using it correctly.  When you get a bottle of shark cartilage, it says take 1 or 2 capsules per day, but that is NOT FOR FOLKS WITH CANCER OR A TUMOR!!!!!!!!!  That dosage is for healthy folks.

The correct formula when one has cancer or a benign tumor is:

         1 Gram of shark cartilage per 2 pounds of body weight

so,

         if you weigh 120 pounds, you should take 60 grams of shark cartilage daily

There are two excellent books on shark cartilage from years ago, titled:

Sharks Don't Get Cancer

and

Sharks Still Don't Get Cancer

They are out of print, but you can find them on Ebay and Amazon, as well as other used book sources.

There is a lot to know about shark cartilage.  I would be happy to tell you everything I know.  If you are interested in having a phone conversation, send me a PM and I will send you my telephone number.

The best product of shark cartilage I am aware of is called Cartilade, and it is produced by a firm out in California.  I had a friend with two forms of terminal cancer, and he successfully eliminated the cancer using Cartilade.  He had multiple myeloma and the end stage of prostate cancer.

Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on September 24, 2023, 06:43:54 pm
Sad to say, I just saw your comment.  Haven't been back on this board for some time.  I apologize.

Shark cartilage is very effective, both for cancer and benign tumors.

However, based on what I read from sneakypete, he is NOT using it correctly. 

@jafo2010

You have me mistaken with  someone else. I have never used Shark Cartilage and know nothing about it's use,other  than  some people swear by it.

My cancer was "killed" by chemo,radiation,and an experimental drug that is now FDA approved. Trade name is Brukinsa and it comes in capsule form that is taken twice  a day.

After being maxed-out on chemo and radiation,I was told I was stage 4 terminal,and there was nothing they could do but give me some experimental pills not yet approved by the FDA,if I wanted to take a chance on them.

3 weeks after starting to take them,I tested negative for cancer. Must be close to 2 years now,and I am still taking them and still testing negative for Lymphoma.

BTW,Brukinsa is now approved by the FDA for treatment  of Lymphoma. Maybe other forms of cancer also,but I know nothing about that.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: jafo2010 on September 25, 2023, 05:38:32 am
Quote
sneakypete...
Ok,now getting back to JAFO2010 and the pills he recommends. Here is where I buy mine from the web.

https://www.swansonvitamins.com/checkout/register.guest.html

CARTILADE (Shark Cartilage) for cancer


The cost for one big bottle is $55.27,and you take one capsule twice a day.

I ordered two bottles at first,and had not finished the first one before I got the "no cancer on your PET Scan" report.

There may be web sites that sell it cheaper,so you can look around now that you have the trade name.

Sneakypete,

I read the above, which indicates you did take Cartilade.  My point is with active cancer or benign tumor, you take the formula I mentioned in a prior post.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Smokin Joe on September 25, 2023, 07:08:49 am
@bigheadfred


Ok,I would have ONE laying around. It never took much  for me to catch a buzz,even on cheap 10 bucks a bag pot back in the 70's. Just one hash brownie would probably last me a week.
...not if it gave you the munchies... :silly:
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on September 25, 2023, 07:53:40 am
Sneakypete,

I read the above, which indicates you did take Cartilade.  My point is with active cancer or benign tumor, you take the formula I mentioned in a prior post.

@jafo2010

I stand corrected.  I obviously did take it,and like many things that happened while under chemo,my  memory of it got lost in the fog.

I started taking the pills I mentioned AFTER chemo and radiation failed,and there was nothing left to take that had been approved for Lymphoma. It was an experimental pill at the time not yet approved by the FDA. It IS now approved by the FDA,and I highly recommend it. I went from "Stage 4 incurable Lymphoma" to "cancer free" in about 3 weeks. I am still cancer-free 2 + years later.

I stopped taking the shark cartilage when I started taking chemo and radiation treatment under the care of a cancer clinic.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: jafo2010 on September 28, 2023, 08:59:26 am
No problem.  Glad you are free of cancer.

But just so you understand, taking 1-2 capsules a day of shark cartilage is NOT the proper amount for addressing cancer.  It is highly effective at the correct dose.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on November 12, 2023, 03:11:28 pm
However, based on what I read from sneakypete, he is NOT using it correctly.  When you get a bottle of shark cartilage, it says take 1 or 2 capsules per day, but that is NOT FOR FOLKS WITH CANCER OR A TUMOR!!!!!!!!!  That dosage is for healthy folks.

The correct formula when one has cancer or a benign tumor is: 1 Gram of shark cartilage per 2 pounds of body weight, so, if you weigh 120 pounds, you should take 60 grams of shark cartilage daily.
@jafo2010 I've been re-reading your comments on shark cartilage and cancer, and looking up Cartilade online, and I can't see how one might consume 60g of shark cartilage. If, as one seller's website indicates, 6 capsules contain 740 mg pure 100% Cartilade shark cartilage powder, then one capsule is only 12.3 mg. At that rate, a 120-pound person would have to take 487 capsules a day. Am I misreading something? (Math is not my strong point!).
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on November 12, 2023, 07:10:17 pm
No problem.  Glad you are free of cancer.

But just so you understand, taking 1-2 capsules a day of shark cartilage is NOT the proper amount for addressing cancer.  It is highly effective at the correct dose.

@jafo2010
ZN
I apologize for my  previous post being confusing. I quit taking the shark cartilage BEFORE I started taking the  (THEN experimental and not approved by the FDA) "Brusinka zanubrutuinbib" 80 mg capsules. These capsules have now been aprroved by the FDA as a treatment for SOME forms of cancer,which I GUESS means those with insurance can get their insurance  companies to pay for it for them.

As noted in an  earlier post,I started testing negative for cancer within  weeks of taking these  capsules,and had been  diagnosed as having "incurable stage 4 Lymphoma before taking them. I take one capsule twice a day.

Yes,I AM still taking them because the VA seems to think I need to continue taking them to keep the cancer from returning,or they would have cut me off.

Since I am an official "Agent Orange Veteran",it is impossible for me to buy  health insurance.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on November 12, 2023, 07:16:25 pm
Sad to say, I just saw your comment.  Haven't been back on this board for some time.  I apologize.

Shark cartilage is very effective, both for cancer and benign tumors.

However, based on what I read from sneakypete, he is NOT using it correctly.  When you get a bottle of shark cartilage, it says take 1 or 2 capsules per day, but that is NOT FOR FOLKS WITH CANCER OR A TUMOR!!!!!!!!!  That dosage is for healthy folks.

The correct formula when one has cancer or a benign tumor is:

         1 Gram of shark cartilage per 2 pounds of body weight

so,

         if you weigh 120 pounds, you should take 60 grams of shark cartilage daily

There are two excellent books on shark cartilage from years ago, titled:

Sharks Don't Get Cancer

and

Sharks Still Don't Get Cancer

They are out of print, but you can find them on Ebay and Amazon, as well as other used book sources.

There is a lot to know about shark cartilage.  I would be happy to tell you everything I know.  If you are interested in having a phone conversation, send me a PM and I will send you my telephone number.

The best product of shark cartilage I am aware of is called Cartilade, and it is produced by a firm out in California.  I had a friend with two forms of terminal cancer, and he successfully eliminated the cancer using Cartilade.  He had multiple myeloma and the end stage of prostate cancer.

Thank you @jafo2010 --- I'm just now reading this and I will need to check into it further.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Bigun on November 12, 2023, 07:51:46 pm
@jafo2010 I've been re-reading your comments on shark cartilage and cancer, and looking up Cartilade online, and I can't see how one might consume 60g of shark cartilage. If, as one seller's website indicates, 6 capsules contain 740 mg pure 100% Cartilade shark cartilage powder, then one capsule is only 12.3 mg. At that rate, a 120-pound person would have to take 487 capsules a day. Am I misreading something? (Math is not my strong point!).

60 grams = 60,000 milligrams.

According to my math, which means that a 120# person will need to swallow 4,800 capsules per day if the capsules contain 12.3 mg each. 

I think 60 mg per day (five capsules) is a much more reasonable number @mountaineer @jafo2010
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on November 12, 2023, 09:21:11 pm
Yeah, I'm having some decimal anxiety here, so I wasn't sure my math was anywhere close.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: GrouchoTex on November 22, 2023, 04:32:25 pm
Thought I would update you on Mrs GrouchoTex's progress.
Chemo ended in May.
Had a full scan in June, good results.
Had a 3 month check up in September, all was good.
Has the next 3 month check up in December.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on November 22, 2023, 04:43:21 pm
Thought I would update you on Mrs GrouchoTex's progress.
Chemo ended in May.
Had a full scan in June, good results.
Had a 3 month check up in September, all was good.
Has the next 3 month check up in December.

That's certainly good news @GrouchoTex  Prayers up that she will continue to have positive results.  :0001:
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: GrouchoTex on November 22, 2023, 04:45:20 pm
That's certainly good news @GrouchoTex  Prayers up that she will continue to have positive results.  :0001:

M D Anderson is a wonderful place to go for treatment.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on November 22, 2023, 06:18:35 pm
As noted on the prayer thread, my sister's cancer is a major concern. She mentioned going to the Anderson center in Houston (currently being treated at UPMC in Pittsburgh).
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on November 22, 2023, 06:39:55 pm
As noted on the prayer thread, my sister's cancer is a major concern. She mentioned going to the Anderson center in Houston (currently being treated at UPMC in Pittsburgh).

Still praying for your sister and you too @mountaineer
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Gefn on November 22, 2023, 06:45:34 pm
As noted on the prayer thread, my sister's cancer is a major concern. She mentioned going to the Anderson center in Houston (currently being treated at UPMC in Pittsburgh).

I am thinking of your sister @mountaineer
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Bigun on November 22, 2023, 10:30:51 pm
As noted on the prayer thread, my sister's cancer is a major concern. She mentioned going to the Anderson center in Houston (currently being treated at UPMC in Pittsburgh).

M. D. Anderson is the best there is. If they can't help no one can.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on November 22, 2023, 10:49:08 pm
Still testing negative for cancer after being told I had incurable Stage 4 Lymphoma,and was offered a chance to take experimental pills not yet approved at that time. This was over 2  years ago,and I am still cancer-free.

They have now been approved for Lymphoma,and I THINK a few other forms of cancer.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Hoodat on November 22, 2023, 10:55:24 pm
Thought I would update you on Mrs GrouchoTex's progress.
Chemo ended in May.
Had a full scan in June, good results.
Had a 3 month check up in September, all was good.
Has the next 3 month check up in December.

YAYZ!
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Hoodat on November 22, 2023, 10:56:21 pm
Still testing negative for cancer after being told I had incurable Stage 4 Lymphoma,and was offered a chance to take experimental pills not yet approved at that time. This was over 2  years ago,and I am still cancer-free.

They have now been approved for Lymphoma,and I THINK a few other forms of cancer.

Keep at it, @sneakypete .  Kick cancer's ass.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on November 22, 2023, 10:56:54 pm
Really happy for you and the Mrs., @GrouchoTex
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on November 22, 2023, 10:57:02 pm
Thought I would update you on Mrs GrouchoTex's progress.
Chemo ended in May.
Had a full scan in June, good results.
Had a 3 month check up in September, all was good.
Has the next 3 month check up in December.

@GrouchoTex

She was cured using only chemo?
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: Hoodat on November 22, 2023, 10:57:39 pm
As noted on the prayer thread, my sister's cancer is a major concern. She mentioned going to the Anderson center in Houston (currently being treated at UPMC in Pittsburgh).

Houston does suck, but getting cured of cancer may balance that out.  The Anderson Center is top notch.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on November 22, 2023, 10:59:34 pm
Keep at it, @sneakypete .  Kick cancer's ass.

@Hoodat

I am not doing anything but taking the pills.

I keep mentioning them here in case anyone else is in a "You are dying from Lymphoma and there is nothing more we can do for you." cases reading posts here,or people who know someone who is in that position.   
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: GrouchoTex on November 27, 2023, 08:44:47 pm
@GrouchoTex

She was cured using only chemo?

Surgery, (hysterectomy) followed by radiation and Chemo.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 06, 2024, 01:46:01 pm
Surgery, (hysterectomy) followed by radiation and Chemo.

@GrouchoTex

Take good news any way you can get it,and this IS good news.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 06, 2024, 01:56:57 pm
Sneakypete,

I read the above, which indicates you did take Cartilade.  My point is with active cancer or benign tumor, you take the formula I mentioned in a prior post.

@jafo2010

My apologies. My mind was even more fried than it is now when I made  the original post about Shark Cartilage.

IF I remember correctly,I DID take it for a very short time prior to getting the THEN experimental  Brukinda Zanubrutinib pills,that have now been approved by the FDA for treatment for some forms of cancer.

My short-term memory was fried by radiation treatments,but I THINK the Shark Cartilage did help me,but it was the Brukinda  Zanubrutinib that "killed the beast".

The "big news" here is that the Brukinda  Zanubrutinib works so well it got early approval by the FDA,and veterans who need it can get it for free from the VA.

I am GUESSING this also means that at least some insurance companies will also provide it for "free" to people who have forms of cancer it has been to be an effective treatment for.

What I do know for sure is that it costs nothing to ask,and asking MIGHT save your life.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: DefiantMassRINO on February 06, 2024, 04:18:18 pm
1.) Maternal aunt died from lukemia in her 70s.
2.) Paternal cousin died of ovarian cancer at 28.
3.) Wife had skin cancer removed.
4.) Father-in-law had skin cancer removed.
5.) Mother-in-law had surgery and is scheduled for ration for uterus cancer.
6.) Wife's cousin died from skin cancer in his 50s.
7.) Friend of the family in his early 80s dealing with 2nd bout of throat and mouth cancer.

Cancer is no longer the immediate death sentence it was 40 years ago, but it can be a rough journey, especially for re-curring instances of aggressive cancers.

I'm fortunate to live near a city and in a state that has some of the world's best cancer hospitals, doctors, and treatments.

If a person is admitted to a hospital, I recommend that a family member always be with them because corporate medicine has reduced the quantity and quality of bed-side care.  There are too few nurses who are overworked.  The insurance companies and hospitals push to have pateients sent home before it's safe to do so they can maximize profits.

Always question what the nurse or doctor about what's being administered and why it's being administered.  Give's doctors and nurses opportunity to double check that they are about to administer the correct dose of the correct medications at the correct times.

If you are with a chronically ill family member in the emergency, don't be shy about suggesting starting IV treatments that have worked in the past.  I believe my wife's last hospital stay for Covid-19/sepsis was significantly shortened because I sugested that my wife be started on IV electrolytes and anti-naseua medication immediately upon arrival at the E.R.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: libertybele on February 06, 2024, 04:25:11 pm
1.) Maternal aunt died from lukemia in her 70s.
2.) Paternal cousin died of ovarian cancer at 28.
3.) Wife had skin cancer removed.
4.) Father-in-law had skin cancer removed.
5.) Mother-in-law had surgery and is scheduled for ration for uterus cancer.
6.) Wife's cousin died from skin cancer in his 50s.
7.) Friend of the family in his early 80s dealing with 2nd bout of throat and mouth cancer.

Cancer is no longer the immediate death sentence it was 40 years ago, but it can be a rough journey, especially for re-curring instances of aggressive cancers.

I'm fortunate to live near a city and in a state that has some of the world's best cancer hospitals, doctors, and treatments.

If a person is admitted to a hospital, I recommend that a family member always be with them because corporate medicine has reduced the quantity and quality of bed-side care.  There are too few nurses who are overworked.  The insurance companies and hospitals push to have pateients sent home before it's safe to do so they can maximize profits.

Absolutely imperative that people legally dedicate a health surrogate and in case they can't serve than another be legally named. Yes the quality of health care, staff overworked, insurance companies dictating how long a patient can stay for xyz procedure is true.  It is frightening these days to go into the hospital.  COVID has had such a negative impact on our health care system and now we have ILLEGALS using the ER for routine doctors visits that hospitals find themselves strapped financially and also in need of healthcare workers.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 06, 2024, 10:06:45 pm
I think this is the same medication the VA is giving a good friend of mine.  They said it wouldn't kill the cancer but would hopefully keep it where it is. I forgot what he said the price of it was, but it was way too expensive for him to afford on his own.

@Jack Russell

I checked the "drug store price" BEFORE it was approved by the FDA as a cancer treatment drug,and a 30 day supply (30 capsules) was a hair over $3,000.

I SUSPECT the price might have dropped some since it was approved,but could be wrong.

What I DO know to be a fact is that less than 30 days after I started taking it,I was diagnosed to be free of cancer,and a week or two prior to starting to take it,I had been diagnosed as having "Stage 4 incurable lymphoma.

MY thoughts on this is IF you have Stage 4 lymphoma and don't have health insurance or help from some organization like the VA,borrow or steal 3 grand from somewhere,and try it for  the 1 month. If it doesn't work for you,you aren't  out nothing but 3 grand that you soon won't be missing.

IF you are lucky,you MIGHT go into remission,and who knows how long   you might be in remission before it returns,or even if it WILL return?

IF it returns,start taking up collections to buy more. 3 Grand a month is a lot of money,but not  if it is coming from 30 or more people.

Title: Re: Share your cancer journey - and any other personal medical advice
Post by: GrouchoTex on February 15, 2024, 02:30:10 pm
@GrouchoTex

Take good news any way you can get it,and this IS good news.

@sneakypete
Mrs GrouchoTex has her 9 month check up in early March.
The 3 month last September and her 6 month last December check ups were all good news.
Technically, here treament was from Surgery in November of 2022 to the last chemo in May 2023.
They counted check up in June as 1st one, followed by 3 month in sept, etc.
Y'all know the drill...
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 15, 2024, 04:05:57 pm
@sneakypete
Mrs GrouchoTex has her 9 month check up in early March.
The 3 month last September and her 6 month last December check ups were all good news.
Technically, here treament was from Surgery in November of 2022 to the last chemo in May 2023.
They counted check up in June as 1st one, followed by 3 month in sept, etc.
Y'all know the drill...

@Groucho Marxist

I am celebrating the good news with you.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: GrouchoTex on February 15, 2024, 06:51:10 pm
@Groucho Marxist

I am celebrating the good news with you.

Great @sneakypete!
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on February 15, 2024, 06:57:19 pm
Mrs GrouchoTex has her 9 month check up in early March.
Praying for an "all clear" for her.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 15, 2024, 10:21:59 pm
My friend can't tolerate the medication, so they are going to go over his options.  This is not good.....

@Jack Russell

Tell  your friend to get the capsules I recommended. Never even got queasy,and I am still taking them.

Also,tell your friend that if he is a "service-connected disabled veteran",the VA will pay for them and even ship them to his house.

If he is not already qualified by the VA,he will be if he applies and was ever exposed to Agent Orange.

I suppose the same can be said for most health insurance companies now that it is FDA approved,but am just guessing here. I DO know it costs nothing to ask.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 16, 2024, 01:26:16 am
It's actually my cousin's husband.  The VA is paying for it.  I'm not sure what the issues were with it as I haven't talked directly to him, but evidently it really made him feel horrible.

@Jack Russell

IF we are talking about the same capsules,I was warned that they MIGHT make me sick,but by the time I received them in the mail I had already forgotten about that,and haven't have a minute of trouble with them.

NEVER underestimate the power of suggestion.

I honestly can't figure out why ANY doctor would tell a patient that some meds might make them so sick they  would rather die than take them.

It's like those goobers have never heard of the power of suggestion.

Or that their patients would be unable to figure out on their own if they get sick or not.

And it's NOT like the patients wouldn't be able to figure it out for themselves if they started puking after taking them.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: the OlLine Rebel on February 16, 2024, 01:55:19 am
@Jack Russell

IF we are talking about the same capsules,I was warned that they MIGHT make me sick,but by the time I received them in the mail I had already forgotten about that,and haven't have a minute of trouble with them.

NEVER underestimate the power of suggestion.

I honestly can't figure out why ANY doctor would tell a patient that some meds might make them so sick they  would rather die than take them.

It's like those goobers have never heard of the power of suggestion.

Or that their patients would be unable to figure out on their own if they get sick or not.

And it's NOT like the patients wouldn't be able to figure it out for themselves if they started puking after taking them.

The other thing about many chronic meds is that sometimes you have to power through initial bad effects, and then the body adjusts.

Is that possible here?  Tough it out for a month and then it evens out?
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 16, 2024, 02:17:09 am
The other thing about many chronic meds is that sometimes you have to power through initial bad effects, and then the body adjusts.

Is that possible here?  Tough it out for a month and then it evens out?

@the OlLine Rebel

I honestly don't  know. I have been taking them for around 2 years now,and have never been sick even one day due to these pills.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: the OlLine Rebel on February 16, 2024, 02:23:10 am
@the OlLine Rebel

I honestly don't  know. I have been taking them for around 2 years now,and have never been sick even one day due to these pills.

Everyone is different.  I’ve been on pills where they advise you to power through if it causes any side effects.  I recall this definitely for neurological drugs.  But of course some may never have trouble and some always have trouble.  It’s just something to verify before quitting and swearing off the drug totally.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 16, 2024, 02:26:59 am
Everyone is different.  I’ve been on pills where they advise you to power through if it causes any side effects.  I recall this definitely for neurological drugs.  But of course some may never have trouble and some always have trouble.  It’s just something to verify before quitting and swearing off the drug totally.

@the Oline Rebel

I agree,but I STRONGLY disagree with  warning a patient that the drugs MAY make them sick. I am pretty  sure most could figure this out for themselves,so why bother putting the suggestion in their heads?
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 16, 2024, 03:39:06 am
I talked with my cousin's husband.  He was on calquence for leukemia.  It isn't what you are taking.  They said if you quit the cancer will likely come back twice as fast.

@Jack Russell

Nobody has told me anything one way or the other  about stopping the pills I am taking for cancer.

The VA is still sending me re-fills,and I am going to continue  to take them for as long as the VA sends them.

I will ask the VA about this AFTER they stop sending them.

NOT going to rock any  boats.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: mountaineer on February 16, 2024, 02:33:56 pm
My sister went in for chemotherapy yesterday. UPMC - once again, just like 2020-22 - is requiring masks, despite the mountain of evidence that they do absolutely nothing to prevent transmission of the Covid virus. When they explained that those were the rules, her husband replied, "Yeah, Hitler had a lot of rules, too." Surprisingly, he wasn't thrown out.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 16, 2024, 02:49:22 pm
Thank you so much for trying to help Pete.  You’ll never know how much I appreciate it.

@Jack Russell

You are more than welcome. I am grateful for the opportunity to POSSIBLY help someone else.
Title: Re: Share your cancer journey - and any other personal medical advice
Post by: sneakypete on February 16, 2024, 02:52:11 pm
My sister went in for chemotherapy yesterday. UPMC - once again, just like 2020-22 - is requiring masks, despite the mountain of evidence that they do absolutely nothing to prevent transmission of the Covid virus. When they explained that those were the rules, her husband replied, "Yeah, Hitler had a lot of rules, too." Surprisingly, he wasn't thrown out.

@mountaineer

I am surprised that BOTH he and his wife weren't thrown  out.

THE hardest lesson I have had to learn was to keep my mouth shut even if I was right when the circumstances dictate that regardless of being right,I WILL lose.

No one individual can fight an entrenched bureaucracy and hope to win unless it is their leader.