Hi everyone,
I was diagnosed with CML 3 1/2 years ago. I am 53 years old and live in Cyprus. I was on imatinib 400mg for almost 24 months achieving MMR, until suddenly in April of 2019 that was no longer the case. My doctor upgraded the dosage to 600mg and after about 3 months to 800mg and for the past 15 months I have been on major molecular response oscillating between 0.07, 0.05 and 0.02 but never going any lower than that. While on the 400mg I felt fine. No worrying side effects besides the watery eyes with the swelling, the muscle cramps and the paling of my skin. After the dosage increase though I started experiencing spells of extreme fatigue and spells when out of the blue I feel like am on the edge about to lose control of what I do, my confidence drops and I try hard to stay focus and composed not go into a panic attack and all that makes me feel very weird and very uncomfortable 🥵. I am sure it’s all caused by some chemical/hormonal imbalance triggered by the drug. My doc when I first told him was attributing it to stress but recently he said that yes what I feel maybe side effects of the drug. The thing, though, is I am not sure if he just said that because I doubted that it was stress or because he actually meant it. Hence, I am reaching out to see if other CML patients had any similar experiences. These spells can come at any time during the day mostly though they hit me around noon or afternoon to early evening. They last from a few minutes to even longer like a couple of hours, when I just don’t feel like interacting, talking or wanting to do anything. Once I was driving my kids to school and I had to pull over just to be able to reassert myself, refocus and regain confidence. I reached to get a mint I keep in the car as an excuse so that the kids didn’t know how I was feeling and after a while I felt better and drove on. In any case, this strange hormonal or chemical imbalance as I like to think has been with me for over a year and it started after my imatinib dosage was raised to 800mg. Does anyone have the same side effects?