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nilotinib and fasting- new discussion thread from below.

hi Jeff,

I hope your CML is effective in getting you back down to your previous CCyR level. Has your doctor given you any reason for your failure to hold a response to imatinib? I assume he/she has done a mutation test?
I am sure nilotinib will be effective, but I understand your lack of 'glee' at the prospect of fasting for 2hours twice a day. 
I am sure those who are currently treated with nilotinib will have lots of tips on how to organise your day so that it is not too inconvenient. It is important to take it on an empty (of food) stomach because food (esp. with a high fat content) increases the absorption rate- which means you will have too high a level of nilotinib in your blood and side effects would be more severe.
 
I know some people have solved at least the morning fast by setting the alarm to wake up 2hours before  breakfast- eg something like 5am or 6am- to take the first dose and then go back to sleep. 
 
Hope all goes well next week.... and please update us on how your handle your new therapy. 
 
best wishes,
Sandy

Submitted by JeffMowatt on Thu, 15/03/2012 - 08:11.

Sandy, Yes I mentioned the negative mutation test above. I appear to have just stopped responding. 
I'd be very happy to wake using an alarm, I don't need it since I'm usually awake before that time. One of my symptoms before diagnosis was lack of sleep due to a raised heart rate. Since treatment waking early with a raised heart rate subsided. It happens now and then, which I put down to anxiety.
It would be 3 hours fasting. 2 before and at least one after. Not too much of a problem in the morning but difficult in the evening.
It's a psychological thing I suppose.Taking imatinib was something that allowed me to put CML out of my mind, whereas it will be difficult not to pre-occupied with a schedule which makes awareness of CML central to one's life       
Jeff

 

Hi Jeff   welcome to the Nilotnib world!   You only need to fast for 1 hour after taking the tabs, so the morning one is easy to plan for,   I set the alarm, take tabs and then have an hour to get on with the normal morning routine. By the time 1 hour is up the coffee is made and cereals ready to enjoy.  In the evening the 2 hours before can be managed if you have a snack, say 4/4,30ish then starve till 6/6.30 ish, ajust to your timings for supper.  I found the best thing was a snack a couple of hours before tabs then I wasn't starving waiting for the 2 hours to slip by.

Good luck

Pennie.

Thanks Pennie,

What I'm really getting at has more to do with awareness. While it was working for me, taking imatinib was a simple routine which allowed me to focus on something bigger than my own health. It was a very successful strategy for maintaining self-worth and good humour. . 

Spending several hours a day consciously avoiding doing something will I suspect, make it difficult to be as positive.

Jeff

 

 

 

 

Hi Jeff,

I know what you mean. I was on Nilotinib for 18 months & although the fasting was ok, once I had found the right timings, it still meant that the issue of drug taking twice daily was a constant reminder of our illness. Somehow once daily is more acceptable to some of us, I suppose no different than taking a headache pill!

I think the drug companys are become more aware of this issue. Over the last 12 months I have been invited (as others, no doubt) to take part in research by  three drug companys.  Every one has focused on timing/fasting & daily V twice daily drug administration. It may be due in part to some people not taking the medication or skipping doses that don't fit in with our life style. But at least the companys know there are many who would prefer a once daily dose. lets keep our fingers crossed!!

wishing you all the best.

Ali

 

 

Thanks Ali,

You saying you were on nilotinib for 18 months suggests that you're no longer taking it. What happened?

Jeff 

 

I have been on Nilotinib for almost a year. It has really helped fight my CML but I completely understand where you are coming from. I have small kids and we eat tea at 5pm ish so for me I have found taking it at 10am/pm has worked. The only prob being if we are out in the morning and we want to have coffee we have to wait or I only have water. Same if we are out with friends we have to rush the eating part to be finished by 8pm, not ideal bt everyone understands.

Nothing is ideal, some days I hate it! But then most of the time it is just my life now, and like it or not I am still here to enjoy my family and that keeps me going.

Best of luck!

emma x

A young familty is certainly something to focus one's efforts, Emma.

Best of luck to you too.  .

 

Hi Jeff, to cut a long story short (& some might say thats unusual for me!) i had been fine on nilotinib for over a year & then devepoled a severe skin rash which resulted in me having iv steroids over 4 days, followed by high dose steroids for months following & I was then taken off it. Tried dasatinib but after a few weeks could hardly move with excruciating joints. Have since had ponatinib & bosutinib both caused elevated liver enzymes....so now back on reduced dose Imatinib & having PCR today to check it is enough to control the CML, so fingers crossed on that front. Interferon or BMT are the only other two options if the Imatinib isn't enough as I had huge problems with that on full dose. I think I am a doctors nightmare!!

ATB

Ali

Hi Ali, A head to foot rash was one of my sife effects with imatinib. It was short lived because having experienced it a decade earlier, long before CML I took it to be a recurrence of the psoriasis I'd developed in adult life. I remember then, how the doctor puzzled over the cause until I related that my sister had been a sufferer.

It was one of several temporary side effect, which I took as part of my transition back to health. I dealt with it as before. Just a few 1-2min sessions in a tanning booth and it settled down. 

Hoping for good results from your BCR, both for you and to learn whether imatinib can be effective for a second time.     .   . 

Jeff

 

 

Hi. I fully understand the issues with fasting but I have a spin on this.  I have been on Nilotinib for a year now which was prescribed directly after diagnosis (on a trial). One of the reasons I chose Nilotinib was actually due to the fasting. I know it sounds strange but, I actually wanted the twice daily reminder! Let me explain...After diagnosis I changed my diet and lifestyle overnight, I believe this change has worked alongside the treatment and allowed me to live a very normal and healthy life. Its the fasting that reminds me to not slip in to the old routine and continue on a balanced diet and fitness regime. There is more and more evedence that lifestyle and diet play an massive role in illness and recovery and it is too easy to indulge in going for drinks and fatty foods! Im not saying I dont do those things, but it is all done in moderation. The twice daily meds work for me. I take them at 6am/6pm.... I have more to say on the matter and am happy to go over how infact having CML has changed my life..

Ash

Hi Ash,

thanks for your insight into how fasting helps you. It is really interesting that you have this 'spin' on this issue and one that might help many people to take a positive rather than a negative view of this particular daily 'regime'. 

 

Thanks again for sharing your view on this- I assume you are responding well - clinically- to nilotinib?

 

Best wishes,

Sandy

 

I can see what you mean Ash. After less than two weeks on nilotinib I'm into a routing of eating better during the day, in anticipation of the fast and like you, usually take it between 5 and 6 each morning and afternoon. My mother tells me I'm looking slimmer and I have lost a few pounds, going to the gym and going for bicycle rides

I was anticipating side effects but can't say I've noticed anything much other than strangely sensitive nipples. According to what I read on the NICE report, they produce less side effects. I had cramps and a rash with imatinib but they passed and I thought of it as part of adjustment to better health.

Aside from this, I feel better already for taking nilotinib.