You may recall that I stopped taking Imatinib due to very long term problems with Insomnia, fatigue, & stomach & back aches over recent months. The result was a surprise actually, as I knew I would feel more energetic, but I did not expect to feel as good as I have great in fact. The stomach and back aches are much reduced, the sleep has been much better, less disturbed, lasting much longer, and I'm not wide awake in the middle of the night. Less tired in the day, much more energy, but the most significant change for me and relief is that the 'cloud has lifted'. I have to be responsible with what I say here, but I now know that either the drug and or the fatigue has lowered my mood long term, and has made things far more difficult for me where normally I am one of lifes optimists. I hope I am one of a small percentage of those rare patients that gets depressed due to these things, and as I said before, it's not the fear of CML etc, I've always coped well with that.
I said to Dr. Marin that I'm convinced the drug switches off or really suppresses something in me, Seratonin maybe. Options were to change to low dose Nilotinib, and see what happens. This appeals due to the reported better side effect profile, but I was told of an up to 5% risk of possible artery problems - the main problem with this for me is that I am only 53 this month, and I will have to take the drug for many years. The other option was to reduce Imatinib to 300 mg daily, and see what happens. I decided to do this first, as I was told that there is evidence that a 100 mg reduction can make a big difference. I'm slightly worried, as I recall from the past that 300 mg was the minimum to be effective, but I was told that it wouldn't be a problem. I will ask more when I go back next month.
I have been back on 300 mg Imatinib daily for the last two days. More frequent visits to the small room, but too early to report anything else. PCR will be completed. I was told of no change in my blood count last Thursday, I don't check the numbers each time but I think there was a slight rise and I will check next time. If things decline again, I intend accepting the change to Nilotinib when I go back next month and will then take it from there. I have thought that in the long term I may still experience similar problems with any of the TKI's, and if so I may have to take other drugs to improve my quality of life issues such as anti-depressants, not that I want to. I can't explain why I left it for so long, I suppose it's because I know we all suffer with side effects, and I consider myself lucky compared to some, but I do wish I had asked for help a long time ago....
Regards,
Phil.
