You are here

Changing sprycel box for « fewer » side effects ?

Hi every one, hope you are fine in these difficult days... I wanted to share some news and need advices according to what happened to me last days.

 

One month ago, when I switched on new sprycel box, I began to have severe side effects such as big reflux, gastro problems, and above all huge back, neck, shoulder and arms from both sides pains which avoided me to move.

 

I had no pain remission at the point that even lied on my bed or on sofa, I was suffering on a scale of 9/10 and I thought that there was a big problem with my cml.

 

The pain was so important that is was nearly at the level of my aches on my diagnosis where I couldn’t move due to extreme pains to my neck and my back, certainly explained by my high level of white cell (approx. 500 000).

 

I had changed of sprycel box on last Saturday and since Monday I suffer half percent lower than previous week so I am nearly sure that the composition of sprycel change from box to box.

 

Even if I still suffer from joint, muscle and bone pains, it is much more comfortable and “livable” than previous month. The new thing on this box is pounding heart and difficulty to sleep because of accelerated heart beats.

 

I have asked my oncologist, she is dubitative and explains this by hyperactive bone morrow and hypersensitivity to tkis therapy, known among 15% percent of patients.

 

Tough life for me, I am only 34 years old and feel twice my age.

 

Any advice greatly appreciated.

 

Cheers for us and for all,

 

Frenchguy

hi, Frechguy,

I also suffered from heart pounding, sleeping difficulty due to sprycel.  My doc gave me tranquilizer to help me sleep, but not too much useful.  It doesn't get better over time, but you may get used to it.  I met a fellow cmler who has been on sprycel for many years, she still suffer from intensive heart beat.  I switched back to Glivec because I don't get much side effect and it was working fine for me previously, my new specialist supported it.  but bcr went up from 0.25% to 0.48%.  My specialist said don't worry too much, need to have another result to show the trend.   I suppose everyone reacts to varies TKIs differently, finding the right one is important.  I suppose the question is to live in agony or try a different TKI that may or may not work for you.   It's just my experience and how I feel.  Good luck, I hope you will find a solution to your problem soon.

William    

Hi William,

 

Thanks for your answer. I have already changed of TKI on last June and was on Nilotinib before but felt worse than on dasatinib with a less good response. For my case, I think I won't switch of tki another time because I know that I will still suffer from same side effects, maybe worse than on dasatinib actually. I think my main problems are due to hyperactiv bone morrow and hypersensivity to tki as my specialist told me : She follows some people like me who suffer from such side effects since 25 years but control there pain by morphin patches. If I encounter such pains as previous weeks next days, then I will consider this option. As you say and I do agree, the main question is what is the most important thing for us actually : Quality of life or run to mmr, I do think that boths are important but living "normally" with managable pains is the most important. to answer to your bcr up from 0.25 to 0.48,  I have had several blips since my diagnosis 19 months ago, I even lost MMR last month (about one log increase) and then recover it, this kind of event is normal in PCR. It depends on a lot of parameters (quality sample....) and the biologist of my hemato center who is reputated in Europe ( Lyon Sud HCL ) told me that on each pcr, margin error can be at least 3 times more or 3 times less so don't worry. 

For the pains, I can confirm at 100%, that they depend on the changing boxes because they are half percent lower than the previous one since I have changed. They vary and now I have acceptable muskuloskeletic pains but heart disorders.

Cheers and sorry for my mistakes in English,

Francis Frenchguy

Hi, nice to be here~~~

 

 

 

 

 

 

 

 

 

 

 

 

White Evening Gowns