Hi all, My husband has been on Nilotinib (Tasigna) for nearly three years, his PCR is at 0.043 so its doing its job. Unfortunately he has suffered from lots of side effects, some of which I have posted on this forum before (constant skin infections), aches, and also severe fatigue just to name a few. Because of the frequency of the side effects he has been getting and the impact this is having on his everyday life we have been offered by his consultants to look at the possibility of changing to Imatinib (Glivec), to see if these suit him better. I know there are pro and cons with both medications, so I appreciate it's a case of lets see what suits him best. However we are obviously anxious that changing to another medication might result in a change in response to his CML. We have faith in his consultants, as they wouldn't suggest anything which would put all the hard work of the last three years at risk and they have assured us they will monitor him closely. But we can't help but feel a little apprehensive about it all. Although he does like the thought of not having to worry about not eating a certain times of the day, he really perked up when that was mentioned. We have been given time to think about it but would be nice to hear other peoples similar experience. Kind Regards Stephanie
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Change from Nilotinib to Imatinib
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Hi,
I' sorry to hear your husband is not tolerating Tasigna well. I am a little surprised by the doctor's suggestion of a move to Gleevec. Novartis make both medications and Tasigna is the second generation, essentially building on Gleevec's success by improving efficacy and reducing side effects. They are from the same family of medication and target the same pathways. I would therefore be surprised if your husband has fewer side effects on Gleevec than Tasigna - I could be wrong, but that's me hypothesis.
In your husband's shoes I would be asking for a move to Dasatinib, which has a different side effects profile and can be quite effective at a relatively low dose. I seem to recall this is available through the CDF; it may be that the consultants want to demonstrate Gleevec isn't a suitable fit before applying for Dasatinib on CDF.
Hope that helps
Chris
Hi Chris,
Just wanted to say thanks for taking the time to respond, very much appreciated.
Your reply has given both my husband and I a lot to think about and I will definitely ask the question as to why they think a first generation would be better than the second generation of the same family of meds.
I will most definitely ask about the Dasatinib and was also going to ask about a reduced dosage of the Tasigna and see how they respond to that.
Big help. So many thanks.
Take care
Steph