Hi everyone,
I’m new to the site, as I have only recently been diagnosed with CML. I have been prescribed Nilotinib and was told I could drink anything (except alcohol) during the fasting times. After reading some old posts on here, I can see that a lot of people only drink water. Has anyone else been recently prescribed Nilotinib and if so, what did their consultant say about drinking during the fasting times?
Many Thanks
Chloe
Hi Chloe,
Sorry to hear about your diagnosis. It's defo a club we never wanted to join. I have been on Nilotinib for 5 months. I take my pills at 8am and at 8pm daily which seems to work well for me. In the beginning I was drinking anything even beer (1 or 2 bottles of beer of non alcoholic mind you), and coffee/tea etc because the documentation just states do not eat. But as you've rightly pointed out lots of people say just water during the fasting period and I now follow this religiously. Basically anything that contains calories should be avoided during the fasted period. Oh and Grapefruit and Pomegranate Juice too.
On another note I drink a lot of water throughout the day and keep well hydrated this defo helps with the symptoms and flushes out all the bad stuff and helps your kidneys as they'll be overworked especially in the early days as your CML is destroyed by Nilotinib (And it will work for you too). I've gotten used to the fasting now and it's not too much of an inconvenience considering it's keeping us alive and the disease at really low levels.
All the best with your treatment.
Alex
Ditto everything that alex said. I have been on Tasigna for nearly 2 years now and am down to 150 mg 1X per day at 0830. I drink a healthy smoothie when I work out around 11:30 and have mango juice with my first meal of the day around noon. Otherwise, it's only water to drink for me which I do throughout the day - probably totaling about 1/2 - 3/4 gallons per day. Gave up the coffee and tea because is exacerbates mild dry mouth caused by Tasigna.
By the way, my oncologist didn't tell me any of this. I learned it here, from my dermatologist and my own research. Water is good even if you don;t have CML and I have grown to actually like it.
Hi Alex,
I wrote a reply to this earlier but I can’t seem to see it. Sorry - I’m pretty useless when it comes to technology. Ignore this message if you did see my last reply.
Thank you so much for your message. I think I will just stick to water when fasting from now on. I want to give the pills the best chance they’ve got!
In my last reply I also asked about your PCR (I think that’s what they’re called) levels. I am patiently waiting until my 3 month appointment to have mine done. Did you see much difference after 3 months on Nilotinib? My white blood count has gone from 54,000 to 4,000 which is great but I’m desperate to know if the tablets have brought down my CML levels.
Thanks again for your help and advice.
Chloe
Hi Cmlijax,
Thanks for your reply. It’s great that you are now down to one tablet a day. Fingers crossed I end up the same way. I’m currently on 2 x 300mg a day, so fasting in the morning and evening.
Can I ask why they have reduced you to one tablet a day? Are you in remission and if so how long have you been there?
Many thanks for your advice.
Chloe
I reached MMR in 90 days and my current level of <.003% in 180 days and have maintained that level of response for the past 17 months. The dose reductions occurred from 5 months through 12 months into treatment and were in direct response to a slew of unusual side effects, none of which were life threatening. My fast response allowed my onc to approve these dose reductions and it has made a substantial difference.
Hi again Chloe,
I had a complete haematological response (chr) in about 3 weeks! This means all my blood levels were normalised. And have been normal for 5 months truly amazing drugs.
I recently had my 3 month PCR and was showing at 2.1%. I had a low presenting PCR as I was on high dose Hydroxy for 3-4 weeks before initiating Nilotinib as I had a very high wbc and enourmous spleen (which also returned to normal after about a month) and the theory by my consultant is that it kicked a lot of it in the butt. I have the standard p210 BCR transcript and no mutations which was also ordered with my PCR due to my lower percentage. Got my 6 month one coming up next month and need to be at less than 1% which I am sure I’ll hit.
I am sure you’ll have a similar response as most do and if you don’t you have another 5 TKIs to try so don’t panic. Easier said than done however I know!
All the best
Alex
