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Information, please

My wife, Val, has been very successful in Glivec for 8 years now - her PCRs generally are "undetectable". However, she has all the usual side effects including water retention, diarrhoeia, pains and very bad cramps at night. The Hammersmith seem keen for her to consider a move to Nilotininb, saying the side effects are likely to be less. However, the Consultant in Exeter (a new one for us because we have just moved here - Stoke Mandeville Hospital before) is saying the side effects on Nilotinib are much the same as Glivec but skin pigmentation can be more severe than Glivec. It is scary changing drugs at all (although the Hammersmith is confident it should go without a hitch) without having contrary advice about the side effects question which would be the only reason for the change. Clearly we need to make a decision fairly soon. Our instinct is to with what the Hammersmith advise but....

Can any of you who have been through this drug change give some feedback to help us with the decision? Is there anywhere we can look to find a research comparison between Glivec and Nilotinib as to side effects?

Many thanks in advance for any input. It will be gratefully received.

David

Hi David,

I moved to Nilotinib on the advise of Hammersmith hospital due to side effects on Glivec and 18 months on and my life has changed immeasurably. I could barely run on Glivec without the cramps setting in, I was bloated, exhausted and whilst I had a low PCR and grateful for the treatment, I have to confess I felt a bit rubbish most of the time. Now on I'm Nilotinib the side effects are minimal. It took a couple of months for them to dissipate, bone and muscle pain, headsaches etc, but now I'm not even sure I have side effects. I am full of energy (completing an a full distance Triathlon on Sunday), working 55hrs and week and loving life.

I know everyones story will be different, but even if your wife tries it and doesn't get on with it, you just go back to Glivec. It was the best thing for me. I am now PCRU and virtually side effect free. Good luck and I hope it works out for your wife too.

Take care
Lynn

Lynn

Thank you very much. Good luck to you too and, in particular, all the best for the Triathlon.

Regards

David

Dear Lynn....

I am sure your story will be of great encouragement to others.... especially those suffering severe IM side effects.
Very best of luck for your triathlon tomorrow!

Sandy

Hi David,

As you know I have no experience of any TKI apart from imatinib, but I would advise that Val follows the advice of her doctors from HH- an expert centre- who have experience in treating CML, rather than a general haematologist.
All the publications I have read have always stressed that side effects between imatinib and either of the 2nd gen TKi's are different and do not cross over from one to the other.... and Lynne's experience supports that.

I understand it must be hard to change- but at Lynne said- Val could always go back to imatinib if she found nilotinib too much of a challenge.

Good luck and best wishes,

Sandy

David Hi,
I have been on ALL of the available drugs, so changing has been a large part of my treatment! I started on Glivec & been through all of them! I seem to be intolerant to all on various dose rates too. I think Ive had all the side effects as well. I too am treated at Exeter & asked for shared care with The Hammersmith, which is now working well.

If I can help in any way, just let me know or perhaps meet up with you & Val? It would be to long a post to go into all the details here ( most of which are somewhere in the archives on this forum)!! I was dx nearly 5 years ago, a date I will never forget like most of us.
Here are my numbers, 01647281620 or mob 07785748226.

All the best to both of you.
Ali

Ali

Thank you so much for your offer of contact. I have given Val your contact details and I anticipate she will be in touch. It is very kind of you. All the very best to you too.

Regards

David