I have been on a reduced dose of imatinib (300mg daily) since April and had a two week break altogether then after my neutrophils dropped too low. Diagnosed last November, BCR of 9% by January so optimal initial response but only 7% in June. Now my ABL/BCR has suddenly increased to 13%. My haematologist thinks it’s because I’m on a lower dose of imatinib but I can’t go on the full dose because of my neutrophils. I am switching to nilotinib at the end of the week. My haematologist tells me I don’t need to fast before or after taking the drug. Has anyone else been told that? And has anyone else had a similar experience on imatinib?
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Intolerant /resistant of Imatinib. Switching to nilotinib and told no need to fast.
Oh my goodness. You absolutely need to fast on Nilotinib the drug becomes extremely dangerous if you don’t. Basically it increases its absorption and so can increase symptoms and some of those are life threatening so absolutely follow the guidance to fast for 2 hours before food and 1 hour after. Otherwise all of us on Nilotinib who have been fasting for many years no longer need to.
I would get clarification on this. Maybe if you are going on a low dose of Nilotinib you skip the second time of the day you need to take you pills maybe that’s what they mean. But whatever you take you should be fasting as far as my knowledge goes.
Let us know how you get on.
Thank you for the quick and helpful replies. I’m going to be on a dose of 400mg twice daily, so not a low dose. I spoke to the hospital pharmacist this morning who confirmed I need to fast. I have lost quite a lot of confidence in my haematologist already, as there have been a number of delays and missed tests along the way. I should have switched to nilotinib a while back I think. This latest wrong advice makes me even less confident! I just hope I react quickly to the new drug when I start on it - hopefully later this week - and my neutrophils don’t go too low. Thanks.
Yes 800mg a day is the highest does on Nilotinib. I am currently on 600 and fast twice daily. I take my meds at 8am and 8pm that means I can eat after 9am and must have dinner before 6pm or after 9pm. I would defo change Haemo after this blunder!!
I am sure you’ll drop lower on Nilotinib it was designed specially for Imatinib resistance.
Good luck and keep us updated on this post.
This is such a basic mistake by the haematologist I can hardly imagine how they came to that conclusion! I can understand why you have lost confidence in your treatment. You do not say where you are treated.... is it a possibility you could ask to be referred to a specialist centre? You need to make a fuss.
Thanks Sandy. I spoke to the consultant haematologist who confirmed that I should fast to ensure the optimal effect from the drug but said it’s not dangerous to take it with food and would rather I did that than miss a dose because the most important thing in her view is to take it regularly at 12 hour intervals. That said, I will definitely fast, as it seems a small price to pay in the circumstances.
The consultant reassured me about the treatment I’ve received to-date and said the doctor I’ve been dealing with is very good but when she mentioned that he’s leaving in August, I must admit that I felt pleased.
My main problem now is to get hold of nilotinib, as it’s out of stock at the hospital and they don’t seem to know when it will come back in. I’m obviously becoming quite anxious, as my disease rate is doubtless increasing (given how rapidly it went up from June to July). I wonder if anyone else has experienced delays in receiving nilotinib? I’m based in east London (my hospital is Homerton). Thank you.
Homerton is my local hospital and is a great hospital for many things - they helped bring my daughters into the world under very difficult circumstances, so I have a soft spot in my heart for it. However CML is not something I'd be comfortable being treated there for. I don't think they have much pedigree in this area and you are not in a distant region where access to better services is not so easy.
I guess if you are being seen at Homerton you must be a fairly close neighbour of mine. I'm seen at Barts who are not a Centre of Excellence for CML (Kings / Hammersmith) but do have an excellent haematology unit. Perhaps you could speak to your GP about your concerns and ask to be referred there?
It's not "dangerous" to take nilotinib with food if you consider "dangerous" with immediate effects. But in everything other than the very short term is certainly is. Taking it with food effectively over-exposes you to nilotinib. Soing it once, by accident, would not be a big deal. But your doctor being blasé about this is not good - it's massively important to fast with nilotinib.