Hi all,
First, I would like to precise too all new members, that I may not represent the majority of the cml patients who suffer like this but wanted to add comment to John, because his journey seems to be so closed to mine.
Diagnosed nearly 3 years ago, I came across several difficult moments and change two times of tki to finish with bosulif.
Since 10 month now, I can tell that my life has turned to something very closed to the beginning of a dying process, sorry for the words but I cannot find anything more true than that.
Indeed, all began suddenly when I was on sprycel a normal day during my cml journey where I experienced a strange weakness which maked very difficult to move and do normal task like walking.
Then, a day later, I experienced very intense burning pain in both my legs, whith stiffness, soreness which had not subsided yet. And, the « best » for the end, I am dealing since that time with constant twitchings (very little spasms) all over my body including my back, legs, arms, jaw, mouth, arms, buttocks, neck, stomach…. and a lot of tingling in both my arms and legs too when I lay down, stretch my legs, symptom I didn’t have before.
I have checked on google and saw amyotrophic lateral sclerosis as a potential second illness with my cml, so I decided to see neuros to find something. I have done several emgs during that time to find electrical abnormalities in my muscles and nothing really wrong was found.
All neuros are formal, it is not als, not either tki ? That is why when symptoms began under sprycel, I have tried to hang on seven months more and then switched on bosulif, tki from which I encountered similar problems.
Every time, I am pulling a muscle, even at rest, I am twitching all the time, and my conclusion is that it only can be tki, cml, or something else but I am still looking for an explanation.
I have stopped one week my tki without any improvement, and I am leaving in hell since that time, try to keep my work, my familly…and when I ask my oncologist, she is totally lost. So what is happening, is it the beginning of a dying process of my body, a suffering from my nerves and muscles even if all my test are ok ?
My last PCR showed an increase form MR4.5 to MR4, and I am just scared of loosing my body, I am not controlling anything in this and have tried all the medications, including fentanyl, neurontin, lyrica, benzo, vitamine d, magnesium, acupunctur, ….
It is really difficult to feel alone in this world, where neurologist, oncologist can’t find anything but I am really struggling to walk, raise my arms, turn my neck. Why, who are suffering like this and what to do to stop these constant twitchings and pains.
I am looking for support, I am really really struggling, I apologize for those in worst cases than me of course, but I am wondering why my body is doing that to me, I am like you John.
My wish today is to tell to all the oncologist, all the cml sommunity that some of us are suffering that medicine, research must be done to improve our condition, our questions.
Please, it is time to make one more step, since the beginning of tki which was a fantastic news 15 years ago, to find a cure, and to make doctors understand, look what is happening to the small minority of us, there must be a reason why all this happening to us, and there should be more talkings between different specialists.
CML is not only a question of number, blood cell, it is a question, a big deal to improve dramatically ours side effects, or second malignancy that could induce tki therapy. I was so well before that I can’t hide that I am unfortunately crying several times a week and depressed by loosing all my body
