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Bosutinib

Hi I am a little scared as I'm going onto Bosutinib on the 6th Jan. I seem to have a lot of problems with side effects. I would like to hear from anyone else who is taking this drug. I have been in remission for quite a long time..at the moment I have been drug free for 6 weeks now and I have been feeling great. I wish I could stay of TKI's forever. I suppose I am feeling a bit worried as to which nasty side effect I may get this time. Any reassurance would be much appreciated.

I just want to wish everyone a Happy New Year...Also, thanks to all the people out there involved with this wonderful support group.

Linda

Hi Linda,
I have been taking Bosutinib for over a year after failing to respond satisfactorily to nilotinib.
The main issue for me has been the diarrhoea- it started after the first dose and even now is not completely resolved. Although unpleasant it does not interfere too much with my normal activity and it did definitely get better after the first few weeks (or months). At the beginning I used to feel very nauseous for a couple of hours after taking Bosutinib ( I take it after the evening meal) but that improved quite quickly and now I hardly notice.
I have also had very dry and itchy skin, thinning hair, back ache and joint pain,particularly in my hands and feet. Every side effect lasts about 3 weeks and then things settle down. All the side effects so far have been manageable (grade 1 or 2)and I try not to worry about them and get on with life.
I can't really say I like bosutinib but it seems to be working - my last PCR (18 months after diagnosis) was 0.22%, still not a MMR but a 10x reduction from the previous one.
This, of course,is only my personal experience and it may be totally different for you. I hope you will tolerate it well and be able to maintain your response.
Good luck and best wishes

Luisa

Hello

I have been on Bosutinib for over a year and can honestly say it has been the best drug of all five. I have been lucky with the gastric issues (not suffered any) although at 300 I did have some liver issues. On 200 though everything has been fine. I do get back pain though but I don't know if it is definitely the drug.
if you want to contact me directly please just ask Sandy for my details.
k

Happy New Year. Thank you for replying. I am glad to read that you have not had many issues with this drug. I am feeling a little better about things. I would like to contact you directly and will send Sandy an e-mail. I am hoping that when I start on this drug, I can start with a lower dose.
Thank you Karen for your reassurance.
Linda

Happy New year to you Lusia. Thank you for replying I am feeling a little better about things. Some of your side effects have been part of my concerns..diarrhoea-nausea also the skin problems..I have had a really bad time with severe eczema which is the main reason for discontinuing Tasignia.I am hoping that I will tolerate this drug.I've also had pleural effusion with Sprycel. I am in MMR and fingers crossed, hoping to go on a lower dose of the new drug.Thanks again for your reply
Linda

Thanks for sharing this, I was on Spyrcel for 5 years but due to pleural effusion I am changing to Bosutinib. 
hope I don’t get thining  hair as my has just grown back.