The Briefing Room

General Category => Health/Education => Topic started by: Mod1 on April 09, 2019, 10:50:05 AM

Title: Share your cancer journey - and any other personal medical experience
Post by: Mod1 on April 09, 2019, 10:50:05 AM
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, 11:14:53 AM
bookmark
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Applewood on April 09, 2019, 12:16:23 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, 01:08:06 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, 01:17:33 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, 01:40:43 PM
BKMK
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: truth_seeker on April 09, 2019, 02:14:51 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, 02:18:14 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: mrpotatohead on April 09, 2019, 02:20:53 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, 02:48:31 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, 03:02:20 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, 03:10:31 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, 03:45:34 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, 03:53:35 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, 04:36:33 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, 07:22:49 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, 03:58:53 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, 04:05:20 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, 10:11:49 AM
@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, 07:15:33 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 11, 2019, 09:41:59 PM
@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 11, 2019, 09:46:03 PM
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 11, 2019, 10:43:05 PM
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, 05:35:02 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, 07:21:07 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, 10:05:17 AM
@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, 10:31:08 AM
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, 10:40:28 AM
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, 10:40:54 AM
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, 10:49:46 AM
Yay @Bigun 
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Bigun on April 12, 2019, 10:57:03 AM
@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, 10:58:27 AM
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, 04:59:40 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 13, 2019, 11:50:23 PM
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, 12:17:47 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, 02:15:37 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, 04:12:02 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, 04:10:08 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, 05:50:43 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, 06:06:42 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 08, 2019, 08:39:46 PM
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, 03:00:10 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, 03:08:23 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, 03:10:19 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, 03:51:58 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, 08:54:56 AM
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, 09:08:20 AM
Wonderful news @sneakypete  888heartkitty
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Sanguine on May 11, 2019, 09:48:50 AM
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, 11:24:36 AM
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, 11:37:01 AM
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, 11:41:26 AM
@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, 11:41:57 AM
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, 12:30:07 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, 12:36:36 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, 03:34:09 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 11, 2019, 10:09:00 PM
@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, 06:36:32 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, 01:48:44 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, 09:38:32 AM
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, 10:02:57 AM
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, 12:49:36 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 breat 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, 10:27:24 AM
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, 04:39:40 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, 06:44:20 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, 06:59:37 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, 06:59:44 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, 07:26:15 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 15, 2019, 09:26:15 PM
 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 15, 2019, 09:43:23 PM
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 15, 2019, 09:59:28 PM
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 15, 2019, 10:43:37 PM
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 15, 2019, 11:23:45 PM
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 15, 2019, 11:34:55 PM
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, 12:02:48 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, 02:43:47 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, 02:28:26 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, 02:30:59 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, 02:05:15 PM
How about some updates???????
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: Applewood on September 20, 2019, 03:10:26 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, 07:31:27 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 22, 2019, 11:58:02 PM
@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, 01:19:22 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, 07:38:43 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, 09:18:11 AM
@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, 10:32:36 AM
Very good to hear, Pete!
Title: Re: Share your cancer journey - and any other personal medical experience
Post by: berdie on September 23, 2019, 04:02:05 PM
That's such good news @sneakypete !  You are tough!