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Reaction to all TKIs

I have had to stop Dasatinib due to a severe reaction. I was only able to tolerate this drug for 2 weeks. It has caused severe muscular skeletal problems, I have hardly been able to walk & its affected every muscle in my body. things are improving now but my arms are still very sore & there has been a degree of muscle weakness throughout my body. My liver is also very enlarged. I attend clinic again on Thursday.

My question is where to go from here? I have reacted badly to Glivec & Nilotinib & now dasatinib. I don't know what the consultant will suggest now, he mentioned Interferon a few months ago as he was worried I would have bad reactions on all the TKIs.

I am very worried as to what may happen in the future if i cant tolerate these drugs. I have to stop typing now as the pain is too much.

Ali

Hi Ali

I can't suggest anything as there are others on here who are more knowledgable than I am but I just wanted to say that I hope you feel better soon and that there is an alternative.

Thinking of you

K

Transplant must be high on your option list so a donor search should be started to explore this avenue,that said how well the TKI are controlling your cml? perhaps other treatments might help surport your continued use of TKIs?

Hi Ali

 

I am sorry to hear that you are not able to tolerate the TKI's. I wasn't either; I had a variety of side effects albeit maybe not as severe as yours. I only tried glivec and dasatanib. I was going to try nilotinib but I just couldn't face it. 

I had a transplant 2.5 years ago and am now CML free. I was lucky enough to have a sibling donor which made the decision slightly easier for me. I also had a mini-transplant. For me, the proceedure was pretty easy. I can't say that this is a path that you should follow but if it would help I would be glad to talk to you over the phone. I am away for a few days so middle/end of next week would be best.

Interestingly enough one of my many side effects was the most dreadful pain in the soles of my feet. I couldn't put my feet flat on the ground in the morning, it got worse so that every step I took was painful. It stopped when I stopped the drugs.

Please feel free to contact me: slleigh@sky.com or look at my caringbridge site.

best wishes

Susan

Hi Ali,

So sorry to read that you're going through a tough period. I'm on Dasatinib and one of my biggest fears is exactly what you're going through- I can't imagine how scary this all is for you.

The main comfort I get from this site is that there are a lot of people out there who care for 'us'- supporters, people who are in similar situations, people who's loved ones are suffering- but specifically there are a lot of people who believe that this disease can be stopped and who are working so hard for 'us'. The scientific progress in the 9 months since I was diagnosed has been incredible, and there are new developments all the time. There is a lot of hope on this site and in the CML community, and I believe that hope is the strongest tool at our disposal.

I hope that you continue to get comfort and inspiration from this site, and in knowing that we genuinely are thinking of you and wishing you well. Fingers crossed that you'll be posting with positive news before very long.

All the best-

Adam

Hi Ali, 

this is a really bad reaction to dasatinib and is quite rare. It sounds like some form of myalgia -which is one of the side effects listed I think.

I attended a conference last week in Vienna and heard that Bosutinib (Wyeth- now taken over by Pfizer) is showing very promising results in trials. Also- and this is causing quite a lot of excitement- a drug from Ariad Pharma which is effective on T315i mutation. 

If you are in molecular remission some doctors are treating with low dose interferon (pegylated Interferon is a new form that does not need daily shots) that seems to keep a lot of people in MMR/CMR over the long term- I know someone who has been using peg IFN on a 2 shots per month basis I think (I will check) for well over 2.5 years now and he maintain molecular remission that way. There are several European doctors that are using peg IFN (almost no side effects) and I think several are expanding the trials. 

Sandy