Ok,started a new thread on this one.
I suspect some of you remember reading my personal motto,"It is MUCH better to be lucky than smart!"?
Well,here is more proof of how true that is.
Thanks to maxing out on chemo,my short-term memory is just a theory these days. I know this,and write notes to myself to remember something,and then lose the notes.
Or maybe eat them,for all I know
Anyhow,for the last several months my breathing has been getting worse and worse,and has gotten to the point now where I sometimes have to ask a local friend to feed my shop cat because I just can't walk from the house to the shop and back to do it myself.
I end up gasping for breath,and feel like my heart is on fire. This is now pretty much an everyday thing because I understand how important it is to not give up. I make it to the shop and back even though it is painful. When I can no longer do this,I guess I will have to get someone to catch the shop cat and take her to the animal shelter.
One thing I THINK I know to be a fact is "Nobody got better by just sitting on their ass and hoping to get better".
Anyway,to the update.
I am supposedly still cancer-free,thanks to taking the ZANUBRUTINIB/ZANU 80 CAPSULES that are sold by a company named "Brukinsa". I get mine from the VA Hospital, and get them for free. I went from "untreatable Stage 4 Lymphoma to "tests show no signs of cancer" after just 3 weeks of taking ONE pill TWICE a day. (PLEASE NOTE THIS EDIT!)
BTW,the recommended dosage according to the manufacturer is 2 pills twice a day,but my cancer doc said ONE pill twice a day,so that is what I have been doing.
Unfortunately,"all good things come to an end".
I got suspicious that something was causing me problems a few months ago,but thanks to Chemo Brain,kept forgetting to tell my cancer doc or anyone else about it. I would remember it while sitting at home typing on my computer,make a note to remind myself,and then forget to save the note.
Plus,I haven't actually seen a cancer doc in maybe a year now. I am to the point where I go to the clinice once every month or so,and they do tests to see in the cancer has returned.
It hasn't.
I am GUESSING that because I am in remission the clinic sees no reason to waste the time of a cancer doc to see me,so I end up dealing with a tech/nurse/nurses aide.
Something else popped up,though. My hands got so swollen I can't see my knuckles anymore and even have trouble making a fist.
Also, my infected leg got swollen and VERY painful again. To the point where it is very hard for me to walk because just having the leg bandage brush against my overalls (the only "pants" I can wear now because the leg is so big) causes a LOT of pain.
Been MEANING to discuss all this with the tech/nurse/whatever for a couple of months,but keep forgetting.
Went again yesterday for my regullary scheduled tests,and by now my hands are so swollen I couldn't forget to mention them because "there they were,right in front of me",so I did,and the tech/nurse/whatever took one glance and literally took off walking away VERY fast and telling me over her shoulder,"I will be right back with a doctor!"
BELOW IS THE IMPORTANT PART/WARNING!
The doc asked me if I was still taking the Brukinsa,and I said "Sure! I plan on keeping on taking it as long as I get it for free from the Veterans Administration pharmacy".
That's when she told me to "Stop taking it RIGHT NOW!"
Evidentially the swelling of the extremities is a sign of something bad. I am sure she told me,but I have already forgotten that details.
She said the swelling was a sign that I needed to stop taking it,and to go without taking it for one week,and to then call her and tell her if the swelling was going down,and to ask for an immediate appointment if it didn't start going down.
Evidentially the fluids in my chest are putting pressure on my internal organs,and that is what has been putting pressure on my heart and lungs,and this CAN be a VERY big deal if I don't stop taking the Brukinsa and/or the internal swelling doesn't diminish.
"Chemo brain"!
MOST people would have picked up on this right away and asked questions about what is causing it and not ended up having these problems.
Right now I am hoping that the swelling goes down faster than it built up as I sit here trying to catch my breath from the exhaustion that typing can cause you.
BTW,this is NOT a warning about Brukinsa as much as it is a warning about when to stop taking Brukinsa. After all,I was terminal and supposed to have died over a year ago before I started taking it,and the cancer went away.
What this is,is a warning to those of you who might be taking it to pay attention to the signs in is starting to cause you problems due to fluid build-ups in your body.
I am hoping these problems will start to go away now that I have stopped taking it. The nurse and the doctor both seemed to be fairly confident that it would,but want me to call them to make sure. It may not be the big deal I seem to be making it,but since they are taking it seriously,I should also take it seriously.
I have no idea what they will want to do or do if it doesn't. I will worry about that if and when it happens.
I don't mind admitting I am hoping it starts working quickly because I am getting tired of being tired,and gasping for breath after walking from the house to the car.
Due to my memory sucking so badly,I hope one of you pings me back to this thread in a week or so in order that I can update any of you starting to go through the same or similar things.
Who knows,if enough fluid goes away to relieve the pressure on my heart and lungs,I MIGHT be able to remember this myself?
