Dear All,
My husband was on glivec for 4 years and changed to Nilotinib recently. He is taking 400mg twice a day. After 3 days of treatment, he suffered from serious headache and vomitting even we followed strictly the fasting rules. We are considering to lower the dosage to 400mg once a day. I would like to know if there is anyone who experienced the similar situation and if the half dose is still effective in fighting the illness? Thanks a lot for your advice!
Fibi
Dear Fibi,
changing to a completely new regime will need time and patience. 3 days is not a long enough to assess response to any treatment and given the fact that nilotinib requires strict fasting is something that will take time to get used to. Headache and vomiting might actually be attributed to fasting itself rather than the drug. Your husband is changing his eating habits... because he has to and has no choice. His previous treatment means that he is used to a the very opposite of fasting... ie eating larger meals. This might very well be the problem ..rather than a reaction to the drug itself.
Halving the dose of any TKI is not a decision to be taken lightly. The dosages have been arrived at by study within a clinical trials and on many patients over a period of years. In the case of nilotinib, 400mg twice a day is the amount that it take the majority of people to see an optimal response. If you were to halve the dose without studying over some time the ph+ cell numbers and bcr/abl levels then you would be playing with fire. Your husband will need to stay at this dose level for a while longer before the 'picture' becomes clear enough to make such important decisions as dose reduction.
The best thing to do is to speak to your husbands doctor and take advice about how to manage the fasting vs eating regime.
I hope all works out and your husband manages to get used to fasting/eating regime, and he does not have to suffer such distressing symptoms.
Best wishes,
Sandy
Hi Fibi, I was on glivec but have been on Nilotinib for just over a year. When I switched over I had quite a hard time with the side effects including headaches and skin reactions. It is very early days for your husband just yet, so dont get dispondant. Things may very well settle down, we must remember these drugs are very toxic, but they do a great job! I had a course of steroids which helped a great deal & I sometimes have to have a short dose of a few weeks when things play up.
As Sandy has already said,its not wise to reduce the dose. Perhaps your husbands consultant can help with additional medicating to overcome the problems ie anti sickness etc. I hope things improve soon. I feel so much better on Nilotinib.
Kind Regads
Ali.
Hi Fibi,
I also moved to Nilotinib recently and felt awful for the first week, I had a migraine which sounds exactly like your husband. The good news is that it does pass quickly. Hang in there!
Lynn x x
Hi Fibi
I changed over to Tasigna nearly a year ago now. When I first went on it I wondered if I had done the right thing, I felt like I'd been run over by a bus. It does pass and in a couple of months time he will be singing its praises, he'll feel like a new man. Hang on in there.
All the best
Apryl
Hi Fibi,
I have been on Nilotinib for 3 weeks tomorrow. In fact I have my first post glivec appointment at the Hammersmith tomorrow.
My consultant started me off on 400mg mornings and 200mg at night. Compared with Glivec this is a doddle.
I have had a couple of headaches, tingling thumbs, and for a few nights, night sweats.
I agree with Sandy that 3 days is not long enough.. Talk to your consultant before changing the dose. As Sandy says there are reasons why certain doses are gievn.
I started glivev on 200mg then 300mg 1 week later and 400mg 1 week after that.
Are you cutting out grapefruit. I was also given a fact sheet at the Hammersmith to not eat Serville oranges, star fruit and pommegrannit. not sure why the last three. Are you drinking enought water?
Is you diet heavy with fat . Apparently Nilotinib does not like fat hence the fasting which can increase the effectivness of the drug. (I.E. I suppose like and overdose)
But hang on in there. Any heavy duty drug for any illness takes its time to get used to your system.
If you have any doubts contact your consultant. dont wait for your next appointment.
Good luck.
Steven D
Thanks Sandy and all of you for your advice!
I think i wasn't not so clear with what i posted before. In fact, my husband was suffering from serious migraine since he was on Nilotinib 800mg. The migraine kept him more than 20 hours in the bed everyday. He couldn't move due to the headache, and became extremely sensible to light so he could only stay in bed for 20 hours in the dark, otherwise he would vomit. It wasn't a light headache that everyone could have. I understood 3 days was not enough to see the effect of Nilotinib, but 3 days without eating but staying in the dark vomitting, I don't think it is a reasonable side effect that one should accept.
We are actually on a trial of Nilotinib and one of the conditions of this trial is that when the patient got some serious side effects (level 2-3) for 3 times after taking the drug, they are allowed to lower the dose. We respect the rules and the decision of lowering the dose to 400mg once a day was a decision made together with our doctor. Now he is under the half dose and the side effects are gone.
About cutting grapefruit and other dieting rules, we have very clear guidelines from our doctor and we follow all the them strictly. We 've been having healthy diet since the first day we were on glivec.
We were told by our doctor that Nilotinib 400mg could be still as effective as Glivec 400mg, that is also why Nilotinib 400mg is one of the options in the trial. However, due to the privacy problem, we can't know if there is any 'real case' that Nilotinib half dose is working well for patients. That's why I was seeking patients with the similar situation like us.
Anyway, thanks a lot for all of your advice. We will fight hard and so do you! 
Fibi
