Hello everyone,
It has been a long time that I had not posted on cmlsupport, the new website looks very nice.
I was diagnosed on april 2014, after several months on supplying a lot of doctors (GP, neuro, rhumato, emergency) that I suffered a lot of pains in my neck and back at the point that I could not move and cryied like a child. The second times in emergency would be the way to diagnose cml, a simple blood test that no doctor pescribed me before...My first pcr was at 91%, and my pains were related to high wbc, about 500 000, a few basts and a huge spleen.
I was hospitalised during one week, firstly puted on hydrea during half and a month and I felt great after 3 weeks.
After that, I have been on Tasigna for a year with a a stable response near mmr but with many strong side effects which were : Back and neck irradiating and bone pains, fatigue, nevralgia, vesical troubles. I felt miserable.
I was confronted by several little blips in my PCR which fluctuated between 0.12% to 0.19% during the last 6 months. My hemato center told me that such differences couldn't be described as blips because of the tiny numbers.
Then, according to my expectation in my results (even if my onc was ok with them) and especially for my side effects I changed to dasatinib on june. The first day was one the worst of my life, my onc recommended me to stop tasigna for 4 days to make a "body wash" but I didn't listen to her and I took it the next day of my last tasigna pill. I must admit I was silly to do that because I vomited several times, with fever, extreme pains everywhere, surely the interaction between tasigna and sprycel.
3 months now that I take Sprycel and I am still suffering from the same pains than on tasigna, sometimes lower, sometimes harder and I am wondering like some people on cmlsupport if it is not nerve damage from cml in itself, my onc told me that few people suffered like this and used this term to describe : hyperactive bone morrow and the only way is to use morphine patches.
I have to admit that there is an improvement in my symptoms since I am not focused on cml. Even if back, neck pains and headaches are still there, I try to forget them by working. I think chronic fatigue is for half percent the reason of my pains.
But the really good thing is that, thanks to dasatinib, I achieved MMR and I am now at 0.05% while I began at 0.19% on June. So there is a decrease trend, I am so happy with these results that I forget all my pains!!
This post is for every cml people who passed trought doubt, it is a message of hope. I never believe that I could have such results and began to lose confidence but now there is a new life which begins. It is like a kind of rebirth even if cml road is very long and hard.
I wanted to thanks Parklife, Lucas, and Sandy for the support, and sorry in advance for my mistakes in english.
Cheers,
Frenchguy
