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Looking at my diet

I am really having a close look at my diet. I am still feeling really exhausted most of the time and if I sit down in the late afternoon I will sleep. Which is no good when I have a class to teach or a 3 year old to look after. So I am avoiding the obvious foods such as sugar and caffeine that make your insulin levels peak and trough but does anyone else have any advice of good foods that can give energy or foods to avoid with our condition. Or even any reports or books that look at diet and cml/ cancer. I really want to get a grip on this and appreciate any help. Oh I should mention I am a vegetarian but all my consultants are fine with that! Thanks, appreciate any thoughts or advice anyone can give me, good or bad! X

Hello,

Are you on glivec? (I am).

Lots of water. I drink 2 litres a day but some of that is tea. Keeping hydrated is important to minimise side effects,

I have a fairly normal diet (some good and bad stuff), but I actively try and eat more fruit and veg. Bananas are good for energy so I try and eat at least 1 a day.

I still feel tired most days in the afternoon at some point, but I would say I lead a normal active life with some grumbling from time to time.

I go running quite a lot, 3 to 4 times a week, 10km'ish.

 

Hi Emma,

I think we have all had to accept that therapy with TKI's will have an effect on energy levels- at least sometimes.

I remember experiencing overwhelming tiredness at 30 minutes after taking imaitnib. Over time this effect did lessen and I was able to overcome it to a certain extent. ... but I did that by taking imatinib later in the day -i.e after dinner, so that I could sleep off this effect over night. Socialising late into the early hours was therefore not an option, but I could keep my energy levels up during the day much more effectively.

I agree with David- fluid intake is an issue and drinking at least 1.5 litres of water (beside tea/coffee/juice etc) really does help.

Also banana's are good for giving a quick lift- and contain a good amount of potassium which is a mineral that we should all try to keep at optimal levels. Eating brazil nuts/almonds/walnuts etc might be a way of giving you energy when it feels like your blood sugar levels have dropped. Peanut butter (wholefood) is also great and I love that with bananas on wholemeal bread.

Don't eat low fat foods- especially processed one's. Fat is a great energy boost and olive oil is a must in my opinion (I am a big believer in butter and cream too but that is personal taste)

I would say the being a vegetarian, you might want to look at supplementing with folic acid and B12- with of course a complete B vitamin too.

Vit E is also implicated in low energy- sometimes anaemia responds to increased Vit E and /or folic acid and B6.

If you can eat whole foods in the main- and supplement with vitamins and minerals (including magnesium) this can do not harm and might help raise your HGB levels and keep them at least over 10 but preferably around normal leves of 12-14 (women- higher for men).

But you will find a way eventually- even if it means changing the time when you take imatinib.

hope this is of some help,

Sandy

 

Thank you for the advice, some very useful tips. I am on Nilotinib on a clinical trial. i shall ask about the supplements, i have not needed them in the past but maybe now i do. hopefully i can take some on the trial.

i do find the fasting does not help, 3 hours without water in the morning and again in the evening maybe contributing as i usually drink a lot (about 8 pints a day is my norm and has been for a long time) so i am getting a little dehydrated.

some good ideas to try, i shall let you know how i get on.

thanks again

emma x

Hi Emma   I am also on Nilotinib, and I drink water in the 3 hour slot. Check with your Dr but I think plain water is fine.  Also my morning dose I take on wake up the alarm is set for the timing,  - then I have done the fasting all night!!  By the time I am showered, dressed and functioning its OK to have breakfast.

ATB   Pennie

Hi Emma... as Pennie has already said, water is, to my knowledge, not prohibited during the fasting hours.... do check but I am pretty sure this is correct.

Vitamin supplements need to be taken with food- so again, I see no need to be worried about interactions between these (which are supplementing the vitamin/mineral content of food) and nilotinib.

Best wishes,

Sandy

I am so very interested to read that! I was told nil by mouth while fasting, if I can drink water that would be wonderful! I shall call my trial nurse first thing monday morning, I shall also ask about supplements. Thank you so very much!
Emms

Em,

i've been on nilotinib successfully for 1 year. unless it is specific to your trial water is absolutley fine at any point in the 3-hour period. I am amazed you've been doing without water for 3 hours a day while on nilotininb - since starting nilotininb i overheat really badly without 1-2 litres a day taken at regular intervals. I also don't think that carbonated water should be a problem - suggest you check on this. ultimately you don't want to drink anything with significant calorific value as this will increase the absorption of tasigna in the bloodstream and could cause the QT interval issue.

ATB

 

Chris