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Diet for CML patient

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Hello,
I am from Malawi and I have been recently diagnosed with CML ( a month ago)
I am having a challenge in terms of foods I am and I am not supposed to take.
I hope I will get assisted.
Thank you in advance

Avoid grapefruit, starfruit and large amounts of pomegranate. Otherwise eat a good healthy balanced diet. 

The single most important thing you can eat is remembering to eat your pills every single day. 

It would be nice if there were wonder foods which would fight CML too - and getting the right vitamins can help manage side effects and fatigue etc. but the fact is that the medication does 99% of the work. 

David. 

Thank you very much David.
What about red meat?
Some one was telling me that red meat is a no no no.

Nonsense. Red meat is fine. Most of us probably eat too much red meat, and could do with reducing our consumption but that's the same for everyone - CML patient or not. 

A good diet helps keep us all healthy and is a good thing to aspire to in the general sense.

David. 

Hi Justina and David
It was helpful reading your feedback on the forum as I to get a bit confused as to what I can can't eat I understand not to have grapefruit are savillie oranges
So is it ok to eat pineapple and tangerines as I use to enjoy theses fruits
I take imatinib 400mg daily
Mike Ashcroft

Pineapples and tangerines are fine too!

You don’t really need to worry about Seville oranges so much, as they are very bitter and not the sort people eat. They are used as an ingredient in marmalade - but a scrape on toast isn’t going to cause an issue.

David.

Hi David
Thank you for swift feedback it's very much appreciated
Mike Ashcroft

Justina,

Recently diagnosed myself I have been educated here on vitamins.  You would think just popping them is alright but there is definitely a proper way for certain ones like the D3.  You should take those with something such as 1/2 avocado...even a whole one if you so please.   Your body can just push it right through and you will not reap the benefits of the pill.  A healthy fat is needed.  It easy to keep almonds and walnuts around to also take with your D3.  Cheese is suppose to be good but I have seen posts where the bleu cheeses and such are a no no.  I will say I have indulged in the vinaigrette bleu cheese dressing very light and rarely.  Cruciferous veggies very good brussels sprouts one of the better.  Steamed.  I like to flavor with lemon juice.  100% cranberry juice with lemon squeezed into it a nice tart drink add mint leaves.  

There are some real pros with CML here that have done fantastic research.  Scuba is one and there are others.  David as you saw is great as well.

 

Stephanie

Sometimes one has to break the rules set by doctors who neither have CML or ever have taken a TKI.

I eat anything I want - including ruby red grapefruit, citrus of all kinds and pomegranate seeds. All so-called no-no's ...

Food - especially food high in vitamin C is vital for good health. Vitamin C absorbs pretty quickly and the effect of the "no-no" foods are short lasted.

So - to avoid any conflict - take your TKI a few hours before or a few hours after eating these great foods. I take Sprycel late in the evening for overnight. The last food is usually 4 or so hours earlier.

And yet - I have had pomegranate seeds as a midnight snack right at the same time as Sprycel (unintentional). Nothing happens. I am PCRU on 20 mg Sprycel.

I do recommend supplementing with vitamin D3, K2 and magnesium as these vitamins and minerals are hard to come by with food alone. D3 and K2 are fat soluble and need to be taken with food that has fat in it otherwise these supplements will just pass through your gut and not get absorbed (fat causes bile to be released and it is the bile that "digests" the D3 and K2 supplements for easy absorption). Magnesium is a mineral that absorbs best when in the citrate or taurate form - so opt for those. The oxide form does not absorb well - so if you take it, you have to take a lot of it and deal with its side affects (laxative).

Most important, in my mind - is to eat healthy food that is natural and includes citrus. Just keep it separate in time from when you take your TKI.

Scuba a few hours? 3-4 hours is OK? Can I ask you something? If I eat two one or two cereal bars with peaces of grape fruite will be a promblem? I am on Sprycel three years know and the desasease is unditectable. In two months I ll stop the Sprycel. I am scared that maybe some bars I have eaten this months had grapefruite and my pcr are go up....

snowman - you are fine. Sprycel has a half-life in the blood of 5 hours. It is metabolized quickly.

I take my sprycel at the end of the day before bed - roughly 4 hours or so after eating. By morning, sprycel is long gone.

Thanks for your response!! So you say that if I eat a bar with grape fruite 3-4 hours after sprycel it is OK? Sorry for asking again but I want to be sure.....

Here is the recommendation from the professionals:

https://www.webmd.com/drugs/2/drug-144641/sprycel-oral/details/list-inte...

"While you are taking this medicine, you should not eat grapefruit or drink grapefruit juice or eat Seville oranges (often found in marmalades) at any time."

Here is what I do: I eat grapefruit and oranges any time I want. My sprcyel dose is 1/5th normal (20 mg). I have no concern regarding grapefruit. Adding the fact I don't take sprycel at the same time as eating grapefruit is just added so-called 'security' although that would not be a concern of mine. I have no side effects from sprycel that I can feel.

I tend to take my sprycel with wine - another no-no. I have been doing this for years. I am "undetected".

What dose sprycel do you take? if you are taking 1/2 full dose (i.e. which would be 50 mg or less), I would not be concerned about grapefruit.

Scuba I take 100mg!my cml is unditected for 2 years now! Can I ask you something? How do you have all this informations about sprycel? Can I find them somewhere?

You can easily do online searches for dasatnib, grapefruit, etc. or any other combination of key words to get started.

I tend to go to the biochemistry journals directly and read the authors research. I have access to medical libraries. Also - over the years, I have had many conversations with medical professionals mostly Ph.D's (not MD's) who understand drug pharmocokinetics. I form my own conclusions and don't rely on the "news" press for insight. And that includes "WebMD".

There is no reason why you should be taking full dose 100 mg sprycel given that you are undetected for two years. I take 20 mg and I am undetected for just shy two years. You are opening yourself up to potential pleural effusion and other toxic effects. You should discuss with your doctor cutting dose to a maintenance level. If your doctor expresses worry about "resistance" get a new doctor. He is badly misinformed.

I found resourch about sprycel and says that you can drink a half glass o grape fruit....in three months I stop the drug so the dose it is not one of my concerns!! But I will discuss it with him!! Thanks a lot my friend for your response!!it was very helpful!!

I would add that the grapefruit effect is well known. It interacts with CYP4A3 that is used to absorb and metabolize a big number of drugs. The effect could go either way, increasing or decreasing the circulating amount depending on the drugs and the individuals. The amount of the CYP3A4 enzyme in the intestine varies from person to person. Some people have a lot of enzymes and others just a little. So grapefruit juice may affect people differently even when they take the same drug. Also, the effect might last for days. Personally, I had my pcr go dangerously up when I was taking cranberry extract for probably the same reason.

hello there, so good to hear that you have been undetected and are at 20mg sprycel!  i am pretty newly diagnosed, started 100mg sprycel on 12/26.  When I mentioned to my doctor about having a dose reduction at some point, he vehemently said 'no.  I don't have any pleural effusion, just some fluid retention and swelling at this point (ankles mostly), along with some common other side effects:  nausea, short of breath, 'brain fog', joint/bone pain, intestinal/gastro upset.  I'm wondering if you have any thoughts on one reducing sprycel dosage so early in their treatment.  my doctor is a thorough guy, very knowledgeable and all, but for some reason he doesn't believe in dose reduction.  Maybe he just wants to wait and see how I do for a while, and thinks my side effects aren't severe enough at this time to warrant any thought of reduction. 

My BRC ABL at diagnosis was 53% and after 3 months is down to 7% (yeah!).  i have had two abnormal EKG's since diagnosis and followed up with a cardiologist who is okay with seeing me once a year. Thanks for any thoughts, input!

 

Your doctor is right.  It's way too soon to reduce dosage.  The people who have the best chance at TFR (treatment-free remission) someday are the ones who have been at MR4 or undetectable for at least a year, and on TKI treatment for over 5 years.  Don't mess up your future chances by hasty moves now!  Unless and until you have unbearable side effects (like SEVERE myelosuppression, not mild) you should continue your course, which is right on target.

Thank you so much for your response!