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Dilemma

Hi all,
I received a mail from my dr yesterday telling me about how good Nilotinib is & saying that it should replace Glivec as firstline therapy within a couple of years.
He'll soon be starting up a trial for patients like me who are CCR or MMR which involves 2 random arms - Glivec 400mg Vs Nilotinib 400 mg X 2 / day.
He said that I could take part if I wanted to.
I really don't know what to think - I've been PCR-U for the past 3 years on Glivec with just the odd slight PCR positive.
I don't have too many side effects from Glivec apart from severe diarrhea at times & my extra 13kgs.
Nilotinib could get rid of my extra kilos & diarrhea, but it could cause other health problems eg; hear, pancreas & low counts.
I think believe that it has to be taken take it away from food aswell.
Glivec has got me to a very good remisssion, but who know whether this will last.
Half of me's tempted to go with the trial, the other says leave things as they are & keep my options open (I could always take my Nilotinib if I started showing signs of relpase on Glivec.
would be grateful for you views on this - thanks,
Barbara

Hello Barbara

I had been on Glivec for six years and had quite a few side effects and quite a few extra kilos, although like you I had been in remission for over 5 years so Glivec was working amazingly for me. In August 2008 I switched to Nilotinib and for me personally this definitely has been a change for the better.

The side effects that I was suffering from were :- severe cramps - no longer get any cramp at all, night sweats - no longer get this, weight gain - did lose a lot of weight but have been really down lately as I lost my Mum to cancer so I know I have been eating a lot of chocolate to console myself, although even when I tried cutting down on Glivec I could not shift any weight, I now know that if and when I do eat sensibly the weight will come off quite easily and I no longer feel constantly bloated, nausea when taking tablets - no longer get this - I take my Nilotinib when I first get up in the morning then eat breakfast one hour later then have my evening meal and take my tablets two hours later before going to bed, this does work for me and I no longer feel sick at all, severe diarrhea - no longer get this at all.

I have now been on Nilotinib for ten months and at my three monthly check ups my count has remained exactly the same at zero with no fluctuations whatsoever and no bad side effects to report so far at all.

Hope this helps a bit and good luck with whatever decision you decide to make.

Take Care

Julie Valentine

Hi Barbara, I can wholly agree with Julie. I too feel so much better on Nilotinib. I said to my Dr that it gave me back my life as i was so unwell on Glivecwith side effects, mostly swollen eyes, terrible tummy, cramps, nausea etc. I have been on Nilotinib for 6 months now & wouldnt want to go back onto Glivec.
We have to remember that most of these drugs will always have different side effect for many different people and in the first instance I had some very bad skin rashes & sore mouth, but that has now settled & was worth persevering with. My results have improved as well, just waiting for biopsy result now, should be interesting.
Also, there is food withdrawall for 2 hours before & one hour after taking Nilotinib as Julie said, but havent found this a problem.

Hope this might help and I wish you all the best. let us know what you decide.
ali.

Hi Barb I have to agree with both Ali and Julie, I feel great on Nilotinib. After all the side effects from Glivec this is a doddle. I have lost loads of weight, no swelling, no puffy face, no cramps. Best of all no severe diarrhea, in fact the opposite if I am not sensible about eating loads of fruit and veg! I have had a problem with high cholestrol and glucose intolerance, but am keeping these in check with diet. These are know side effects.

I am only on 400mg daily, and take it on waking then breakfast about an hour later. Still not at zero, so might have an increase at next appointment. Very low PCR - steady unlike with Glivec where this was rising each test.

It is worth thinking about, but only you and Dr. can say if now is the time for the change. In my case I had become intolerant of Glivec and my counts were rising so it was the way forward for me.

Hope this info helps, good luck with the decision.

Pennie

Thanks for your replies, I really appreciate them.
You all changed to Nilotinib because Glivec didn't work for you or because of severe side effects so I undersatnd what you say.
After much thinking, I do honestly believe that for the time being I should stick to Glivec; sure it makes me fat & sure I get some really bad days with it, but who knows - things could be worse with Tasignia, a lot of people on the US list have said 'if it ain't broke, don't fix it" & I can't help agreeing with them. I'm lucky that Glivec has worked for me & feel that I shouldn't be greedy by wanting zero side effects; I prefer to keep Tasigna in reserve if ever things go pear shaped.
I'm fully aware that lots of people don't have my choice & I know how blessed I am, but I'm sure within the next few months or years more & more of us will be faced with similar choices (swapping a drug that's giving satisfactory results for a 2nd or 3rd generation drug that might do better),
thanks agian,
Barbara

I like the idea of keeping the next generation meds in reserve for when Gleevic fails or becomes resistant. In my case, I'm handling all this for my 11 year old son - who may just need meds for many decades. Time will tell. We're comfortable with Gleevec now that there's 10 years of results behind it. Eventually, the studies on the newwer meds will catch up - and then, there'll of course be newer meds/targeted therapies... Maybe even cocktails. Yet the thought of alleviating my son's bone pain & headaches would also be great. It is food for thought.

Best regards,

Tracey