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Nilotinib fasting & vaccine query

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Hi all,

I have been taking nilotinib since end July (having been on imatinib for 8 months) and my BCR/ABL has gone from 13% to 0.03% which is great. 

I was originally taking nilotinib (800mg daily) at 6am and 6pm which worked well except I was losing a bit of sleep from having to wake up early. I recently changed the timings to 11.30am/pm, which works better with my schedule. However, because I tend to have a big evening meal at around 8pm, it means that my stomach is still quite full by 11.30pm. Even though I’ve observed the two hour rule, I feel quite full at that point. I’ve  been waking in the night feeling hot and thirsty and am aware that I’ve taken the drugs whereas with my previous routine, I simply didn’t notice it.

I’ve decided to switch back to 6am/6pm but am concerned about changing my hours for the second time within a week, and wanted to ask if anyone else had experienced the “druggy/thirsty/hot” symptoms that I’ve been experiencing? The instructions are “at least” 2 hours before food and I feel as though after my evening meal, I need to leave it longer.

Also, does anyone know if CML patients in the UK will be within the first batch of people to get the vaccine here? I’m 49 and based on the guidance so far, I don’t think I will qualify until over 65 year olds have had it. But this seems rather unfair given the “extreme clinically vulnerable” status that we have.

Hi Sally
 

I am on Nilotinib for 2.5 years so far and I’ve never changed my timings except for when the clocks change here in the UK. Personally I would perhaps wait a while before changing again because you’re going to have too much or too little in your system during that change. I don’t think it’ll cause you any harm though and certainly won’t affect CML at all. I remember once when I first started taking them there was a clerical error and I was without meds for 3 days I was so worried but my consultant said it would make zero difference.

In terms of thirst yes Nilotinib causes me dry mouth in the mornings this didn’t start until many months into treatment. Others experience the hot flushes you mention.

In terms of the vaccine although officially we are in the high risk group here in the UK I am told multiple times that those that respond to TKI are no different from the general public so wouldn’t be concerned about that. Their are over 100 types of Leukaemia and we are bunched into that group. I don’t think there is enough evidence to know if the Vaccine is even safe and if it is is it safe for those taking certain medications that we just don’t know and will wait to see. Personally if offered to me I’ll wait for more evidence that this is safe to take. I watched something on the news that said vaccines normally take 10 years to develop and test and this has taken 10 months that makes me personally a little skeptical so for the time being I’ll pass on the vaccine...

Alex

Thanks Alex - helpful as always. I think I probably will make the change on timings just because it’s interrupting my sleep (which was the whole point of changing in the first place) and also it’s made me anxious that I’m over-absorbing the drug whereas previously I was taking the drug after not having eaten for at least 4 hours. The other thing is that sometimes I drink a glass of wine or two in the evening, so I wonder if there is additional risk of over-absorption and side effects. 

It’s good to hear your view on Covid and the vaccine. At the start of the first lockdown, my neutrophils were below 1, and my disease rate was around 9%, so I was higher risk. I feel in a better place - now that I’m in remission. That said, I think I will take the vaccine as soon as it’s offered unless there is any contrary evidence as to its safety at that point. 

Best, Sally

No problem at all Sally.

Yes if it’s affecting your life then certainly change. I have noticed sleep disturbances on Nilotinib I would LOVE to have an uninterrupted sleep. I think partly my anxious mind is at work haha.

I too have wine occasionally and it really does dry me out on these meds and I can’t handle alcohol like I used to. 3 glasses of wine and I am borderline drunk as a skunk. I haven’t stopped drinking and their is no evidence that alcohol effects TKI any way but I certainly know when I have had a drink or 2. It’s possibly the same for you.

Good luck and congrats on MMR you’re beating me haha 😂 

Alex

Hi Sally, hi Alex,

its always interesting to read Alex’s replies and he’s spot on every time, but on the covid vaccine situation I’m in the queue ASAP, the worlds top pharmaceutical companies have thrown the kitchen sink in to develop a vaccine irrelevant of development cost, I’ve walked on egg shells for the last 8 months, I don’t fancy the alternative! 

Peter

Hey Peter,

I hear you and completely understand I am sure the vaccine will be a knockout and another from Moderna announced today 94% protection. I have a lot faith in science after all we probably wouldn’t be here now without it. Goes to show when people come together they can overcome life’s obstacles. I prefer this type of science rather than sending people to space especially at a time when our planet is in dire need of correction 🤣

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