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Nilotinib

Hi

I have just started taking Nilotininb and after 6 days its not too bad, normal aches and pains and tiredness. I have found the fasting ok but i have been drinking green tea during the fasting period which after reading some posts I am now concerned that perhaps i shouldnt be doing this. Please advise

Jacqui, I am not aware that you should not drink green tea with nilotinib- or any other TKI- so I am not sure what to advise.
Which posts/info did you read that made you aware of this? Do you mean during the fasting periods?

sandy

Hi Sandy

Thanks for reply, yes I meant during the fasting period

OK, well I think that you might need to be more strict when during your first few months of taking nilotinib. I understand that only water is allowed during the fasting period- although I think Naomii drinks 'flavoured' water?

I would have thought that probably weak tea (without milk) would not do any harm as to my knowledge it is foods/drinks with a high fat content (milky drinks) raise the amount of activity (of the drug) to the point that it increases side effects.

Maybe those who are currently taking nilotinib might like to comment here? There must be someone out there who can advise Jacqui?

Good luck with your new regime ;o)
Sandy

Thanks Sandy It doesnt seem to making a difference but it would be interesting to hear from otheres who are taking Nilotininb to see if they have other drinks.

My side effects have not been too bad - normal aching but that seems to be easing and I have only been taking them for a week!!!

Jacqui

Hello Jacqui,

i'm 24 months into Nilotinib now and have read mixed reports about the fasting element. I tend to stick only to water - however, i have been known to have a cup of weak black tea 30 mins after taking the meds. The risk you are mitigating by fasting is the QT prolongation. This was found in a small number of patients during the trial. A suspected cause is taking Nilotinib with food which increases the efficacy of the medication.

So bearing in mind the small number of people who would actually be affected by this and the fact that you're drinking tea, not a protein milkshake or 3 course dinner, then your risk of an adverse reaction is probably quite low. But this is your decision and my own view is each time I deviate slightly from the defined schedule or rules, I am leaving myself open to an increased risk of some description - that's not to say i don't deviate i just have periods of minor guilt :-)

I feel pretty comfortable having a weak cup of tea as described within the fasting periods - whatever you're comfortable with.

Out of interest did your doc do a baseline ECG prior to you starting Nilotinib?

Hope that helps

Chris

Hi Jacqui
I have been on Nilotinib for 18 months now and I was told only water during fasting period, sometimes when I am freezing cold I risk a peppermint tea but I have noticed that my rash can sometimes be worse if I do this too often. I don't know it is because I am on a trial but they were very strict about nothing except water.
Hope this helps, good luck
Emma x

Hi Emma

I have been lucky so far I dont think I have any side effects. I did develop Roscea whilst on dasatinib which hasnt got any worse. My consultant warned me mainly about headaches (luckily none). What is the rash you have like

Thanks for the reply

I have continued with the green tea (obviously no milk) and I have been fine - I cant say that I have had any of the side effects mentioned. I think I had worse side effects on dasatinib to begin with but they were mild

jacqui