TeddyB - Wow, full let-down. Know the feeling. Sounds like your onc and mine were schooled at the same place, Conservative U. We have to trust them, though, right? I keep coming across this phrase, "self advocacy" and I must Google it to see if I can glean some insight as to why, when I get knee-to-knee with the onc for my 15 minutes, I never seem to be able to get across how bad I feel. We laugh and bandy current events around, talk about our kids, and before I know it I'm out on the street with my status neatly quo'd. No changes. Just "managed." I'm pretty sure your onc considers only the following: First priority is knocking the CML back - check. Is the GI stuff Grade 3 or 4? No? Check. "Symptoms can be managed" - check. Done. Next patient, please.
The only way I got any attention was to kind of tell a fib and use the magic phrase, "short of breath." I wasn't really, I just couldn't move without extreme tiredness and I knew something was wrong and I knew it was because of the TKI. It was completely vindicated - pleural effusion - 2 months off the TKI and I was totally restored to happiness and well-being. (Had to go back on, of course. So fun's over.) So I have learned to squawk and holler: "I'm not happy!" - I feel like a toddler and an idiot - but it's the only way to get attention from these guys. They don't want to hear about side effects, they don't believe in side effects, they don't care about side effects, they can do nothing about side effects. They were trained to whomp the cancer and that's what they can do and what they will do.
Anyway, just ranting and venting here. I really like my guy and he's light years better than my first. I guess you'll have to put up with the GI issues until you are just too miserable, and then you'll have to yell and demand a change - reduction or switch.
Yes, seems our oncs are a bit reluctant to try new routes. Yes, i can manage the GI issues, probably a long time if they don`t get worse, i just need to plan more and watch what i eat
Seems wine, sour cream, coleslaw, lasagna, salads, onions, spicy and fried foods upset my stomach now.
4-5 months ago i only had to watch out for spicy foods.
Ditto what Kat said. I just got my latest PCR and it validated the dose reduction that I basically had to tell my onc I was doing 3 months ago. His first comment that day on March 5th was "dose reduction is not an option. You have only been on the medicine 5 months." I left that day and started taking 450 mg per day instead of 600 and he knew it and has tested me 3 times since that day: .006%; <.003%; and <.003%.
If they let us dose reduce and something terrible happens, they get sued. If we live miserable lives because of TKI side effects but achieve MMR, they win awards and don't get sued.
The landscape is beginning to change though and with a couple more years of data from the DESTINY study and others, the conservative oncs will have the legal cover they need to work with us to find the least amount of TKI that keeps our CML at MMR or better. I am hopeful, but most importantly, incredibly grateful that TKI's exist. Now that we are beginning to get past the wide-eyed wonder of such effective drugs, the next step is to tailor dose on a patient specific level while we wait for a cure or less toxic TKI's. Some oncs are doing this now, but they are still in the minority (Dr. Cortes at MD Anderson for example).
Don't give up the fight Teddy. Talk about it at every appointment and take armfuls of supporting studies with you.
Glad to see your reduction worked well for you. I have been thinking the same thought about reducing to maybe 300mg or even 350mg by myself, but i am now splitting my dose, taking 200mg with breakfast and 200mg with dinner. At least it seems to slow down the diarrhea a bit. Maybe i will notice a difference with the nausea in a few weeks, or at least i hope so
Might not be a bad idea to go down the path of a colonoscopy. First to make sure it isn't anything else and if it isn't then the gastroenterologist might suggest your Gleevec is contributing to your problem. Your doc would have to listen then. :-)
I am not really sure i could handle a colonoscopy right now after 2 surgeries to remove an anal fistula.
Mmy "rear end" is bleeding every day after toilet visits because of the open wound next to my anus (open into my colon/rectum, luckily its getting better now)
I would think it might be a good idea to let it heal some more first, also the thought of a "garden hose" up my butt does not sound appealing at all
I am putting myself on 1 month of alcohol/snack ban (not even red wine ) until my next onc appointment, to see if that helps.
But you are definitely right, if i do not get better i will probably have to give the "garden hose" a try.
Ugg, just looking at that thing makes me shiver........