""But I feel much better after reduced from 400mg, my cramp is much much less and my GI issue also must less...
Just cross my fingers and hope for the best... bless all of us...hoping for the cure.""
Been on Gleevec since 2005. Took a Gleevec Break for 8 weeks do to other health issues and taking antibiotics and pain pills. Also tried Sprycel 50mg, for a few days and it was terrible for me, felt like I was at death door, went thru that when starting on Gleevec 8 years ago, don't care to try that again. I think at my age 65 years and taking these meds for 8 years has had some toxic long term side effects. Kidney GFR at stage 3, and severe lower abodomen pain, but it goes away when not taking Gleevec. If I switch to antoher TKI just swapping side effects, as they all have toxic effects of some kind. Getting to old to be jumping around on TKI's to much stress. Anyhow when I went back on Gleevec two months agok I talked my onc into lowering dose to 300mg. However got my PCR in the mail today and it was 25.629, hopefully the next one, in 3 months will be better, as I am sure after being off Gleevec for 2 months it will take some time to get back where I was before I stopped. What ever the results, I don't intend on raising my dosage or changing TKI
s. . If my onc throws a fit and/or refusing to refil my scripts or see me, I guess I will just go without, I don't know. Have been to other oncologist but they all want standard or close to standard dose, and I don't intend on ever going on a high dose of anything again or my CBC counts be on the sever low side. At 65 years old I'm looking for a quality of life. Although these drugs may be killing the CML, the mother stem cells is still spitting them out, as fast as the TKI 's are killing them. I feel like these drugs are slowing poisioning my body and killing my major organs. Think if I take lower dose, I would feel better and slow down the process of my other health issues. Don't think it is possible to reverse kidney or liver damage, at least not in my case. There are no reall long term statistics on low dose especially for my age, so how do they know// They study these drugs for a short time and push them out so quickly., that I feel like they are still in a clinical trial. Well Gleevec has been out the longest, so at least there is some data there, but don't think there are any real studies on low dosage. For those who don't mind it, that is Ok, but I do, but it seems you can't fight with the drug companies and their protocol. None of them want to lower your dosage, to much money lost.