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Nilotinib

I have just transfered from imatinib to Nilotinib. Does anyone have any tips on the timing of taking the tablets when this has to be 2 hours after food and 1 hour before food sheila

 

It depends if you eat breakfast or not, either way I would advice you to be prepared for many "I want to eat but I can't for 3 hours"-moments. They will come. Stay away from sugar. Hope you figure it out (did the same transfer last december)

Hi, I’m also about to switch from imatinib to nilotinib assuming my cardiogram and blood tests allow me to. I’d be interested to know the reason for you switching. And also whether you’ve had any adverse side effects. My reason is because imatinib keeps causing my neutrophils to drop too low. I have been on a lower dose of imatinib since April and I haven’t met my 6 month target (I’m stuck at 7%). I’m hoping I will get back on track with nilotinib. Unfortunately I’ve lost a few months on this due to test results being lost as a result of covid-19 etc. 

Hi Sally ,pity you can't change to Dasatinib as you wouldn't have any of these problems with fasting it would be so much easier .As you haven't changed over yet couldnt you just check with your doctor to see if it's possible.I changed from Imatinib to 50 mg Dasatinib with no problems .Fasting is such a nuisance and makes things so complicated ,Dasatinib is one tiny pill before bed ,job done .Good Luck on your journey,stay safe, Regards ,Denise.

I am transferring because my gene tests show there is some improvement but it slower than the consultant would like. I have been on imitinhib for 12months with no side effects except for mild nausea for a couple hours after taking the tablet. Although i did have muscle pain in the last couple of weeks. Sheila

Thanks Denise, I will ask my haematologist that question, as he hasn’t explained about the fasting.  Has dasatinib worked well for you?

Thanks Sheila, I had mild nausea after taking imatinib for the first three months of taking it but then it disappeared. I quite often have an unsettled stomach but otherwise all good except that my gene tests are slow as well - some improvement but not enough and also the impact on my neutrophils. Has your haematologist suggested alternatives such as dasatinib?

Hi, I have learnt so much from this site it's a godsend .I Thought Imatinib works the same as Nilotinib So usually Dasatinib is used because it strikes differently ,but check out older posts to make sure I am no expert just a CML er like you .Yes Dasatinib has worked well for me ,I am undetectable now ,had a headache for a few mornings when I changed  but by the time I had my breakfast it was gone ,instantly felt and looked  so much better on Dasatinib than Imatinib that completely drained the life out of me .Is your Doc a specialist mine isn't ,wanted me to start on 100 mg but thanks to Scuba I pushed for 50 mg and that did the trick I am gradually reducing ,on 40 mg now.Any more questions please ask ,I don't mind .Regards ,Denise.

Hi Sheila,

I have been on 600mg Nilotinib for 26 months. I take my morning dose at 8am and 8pm. I find this is the best time that doesn’t really interfere with my life too much. This means I eat breakfast after 9am and I eat dinner before 6pm. This allows for the no food x2 hours before and x1 hour after. And allows the 12 hour time gap. Make sure you mostly adhere to that as the drug weakens after a period of time hence you need to take it at the required time.

You honestly get used to it. I have an app that reminds me to take my pills twice daily.

The only time it can be a pain is when socialising ie out for a meal or drinks with friends and family. But everyone knows my circumstances and it’s easily accommodated. A small price for life.

Yes Nilotinib is identical to Imatinib in how it blocks the BCR but I’ve been told it’s about x30 times more potent.

Once you get in the swing it just becomes the normal. Sure I’d prefer once a day or not at all lol but that’s it for now. The only reason maybe they haven’t prescribed Dasatinib is the Plural Effusions that seem to come with the higher dose. And could be cost related. Also you have to be careful with switches you can’t just willy nilly switch to another drug ideally without mutation analysis because it can increase the chances of resistance and other domain mutations. As Nilotinib is identical to Imatinib the chances of it creating resistance is low.

All the best

Alex

Thanks for all replies  very helpful. I am trying to take tablets at 8am and 8pm  with breakfast at 9am and evening meal before 6pm.  Sheila

I switched from immatinib  to Nilotinib due to my BCR not reducing enough. I am now at 0.02 and have no side effects i am aware of. You do get used to the fasting and it has not really caused much of a problem. I take mine at 6.30. In the morning Iset an alarm and take the tablets and then go back to sleep for a bit so i can have breakfast before work. In the evening i can then eat from 7.30.  You will find a time that suits you.