What to avoid on ibrutinib ?

[aj33]

Hi everyone, hope you all are doing well. I was just wondering all the things that you have been told to avoid while on ibrutinib? We were told Seville oranges, grapefruit, cinnamon.. thanks in advance

[Flabal]

I am on ibrutinib for three months. I avoid Seville oranges and on the box it also states to avoid tropical fruits. Not sure what those are.

[country76 in reply to Flabal]

Pineapple, papaya, bananas fruits we get from the tropical areas. I didn't know about that one. I didn't know about cinnamon either. Licorice!

[BeckyLUSA]

The same as you posted except have not heard cinnamon. On Ibrutinib for 2 years, Still bake/cook with cinnamon when needed. Have not seen or heard anything about it. Maybe I am missing something ?

BeckyL USA

[kathymac52 in reply to BeckyLUSA]

We NEVER were told cinnamon or bananas......just Seville oranges, marmalade, St. John's Wort, star fruit. My husband eats a banana a day, and sprinkles cinnamon on oatmeal etc....no problem as his labs have trended in the normal range for about 6 months. He has been on Ibrutinib for 18 months now.

[country76]

Licorice.

[country76]

Licorice also piperine.

[zaax]

Weird the only ones i read about were the ones on the patient advice paper in the box. ie Grapefruit, grapefruit juice, and Seville oranges (often used in marmalade), St. John's Wort.

[annmcgowan]

I was told grapefruit, Seville oranges, marmalade and star fruit. Never heard of cinnamon or pineapple etc.

I asked about tonic water as I used to drink it a lot and told to stop due to quinine. I have since read a post which suggested the amount of quinine in tonic water is not large enough to interfere with ibrutinib.

I was also told recently to stop PPI’s given recent research suggesting interference with ibrutinib absorption. I have now been informed I can use PPI’s as impact on ibrutinib absorption is not sufficient to warrant stopping where needed.

All of my information comes from my CLL specialist, who says we are learning all the time about Ibruitnib as such advice will change as new research informs us.

Good luck

Ann

[fapumpkin]

Grapefruit, star fruit, serville oranges, and pomegranate.

Also Stilton and other blue cheeses.

[Ellieoak in reply to fapumpkin]

The grapefruit and oranges but No way we're those cheeses ever mentioned. And I go to the lectures and audios. I had been on Imbruvica for 5 yrs no prob with eating my blue cheese.

[KatieBlue in reply to Ellieoak]

Grapefruit and Seville oranges. I never had cheeses, cinnamon or piperine/peperine mentioned.

The piperine is a bit concerning as I had been taking it (bioperine) and it’s still on my med list. I had stopped it for other reasons, but I would’ve thought with it on my list the pharmacists who came in to talk to me about ibrutinib would have at least brought it up.

And cinnamon!?! I guess I will need to check, because I do use cinnamon...

[mrsjsmith]

Agreed Scott,

It’s interesting that the only foods I was told to avoid were grapefruit and Seville oranges, and an assortment of supplements. Sadly I love grapefruit and marmalade ☹️

[country76 in reply to mrsjsmith]

That's all was told too. I learn a lot from other CLL patients. In fact, it has really helped with side effects.

[mrsjsmith]

Hi Scott,

Nice to see you here 🙂

[fapumpkin]

The consultant I have said no blue cheese or stilton.

[JustAGuy in reply to fapumpkin]

Maybe you were told to avoid these cheeses because of high bacteria level in them?

[fapumpkin in reply to JustAGuy]

Listeria was mentioned

[AussieNeil Partner Administrator in reply to fapumpkin]

In that case, as you have no doubt worked out, your consultant's dietary advice was related to your risk of being neutropenic and more susceptible to food borne infections from bacteria, that wouldn't a concern otherwise.

[country76]

I love pink grapefruit, unfortunately, it is a problem with several drugs. With the licorice and peperine, it blocks the enzyme that breaks down the ibrutinib which makes it build up in your body. I learned the hard way and found out what was wrong on this wonderful website.

[BSMI]

And (as well as food) some types of medication including Ibuprofen &, as I discovered, some antibiotics.

drugs.com/drug-interactions...

[teknomek]

The blood levels of this medication can be affected by certain foods and medications, so they should be avoided. These include: grapefruit, grapefruit juice, and Seville oranges (often used in marmalade), cinnamon is not on the list and is ok.

[shoshanaz]

I've only heard grapefruit and Seville oranges as well. BTW, for those in the US, I asked Polaner if they used Seville oranges in their brand orange marmalade and was told that they do not.

[Angus1953]

I was told lemonade too as I use to drink it

[CLLCalifornia-USA]

I’ve been on Ibrutinib since January 2017 with great success and no negative side effects as of yet. I love cinnamon and sprinkle it on my yogurt daily and put it in the filter of my coffee pot. It gives the coffee a great taste. I also bake with it. I haven’t heard that cinnamon and Ibrutinib are incompatible. Best of luck. Sally

[wilhoitaz]

I take a cinnamon supplement with my pills-- I have CLL take Imbru-ok with oncologist

[dantetheinferno1]

Turmeric supplements. Although I was told I could occasionally have something cooked with it. Will have to ask about cinnamon and licorice- hadn’t heard that. The only real no-no’s were grapefruit and Seville oranges.

[RJR1]

I'm fine passing on grapefruit...most of the marmalade I see doesn't specify if it's my ads with Seville oranges....so my guess is unless it's real British marmalade they just use plain old oranges...after enjoying marmalade for about 50 of my 69 years I've decided to enjoy it again in moderation... imbruvica be damned.

I might even start enjoying a glass of non Seville oj again

[Irishgreek]

I was told everything that you were told, and also no live vaccines, and no Advil or ibuprofin products.

[vog292]

My understanding is that to avoid only grapefruit and seville oranges. Of course all "blood thining" foods, vitamins, supplements and prescriptions could have a impact in INDIVIDUAL cases, and that may be one reason why one CLL specialists may give some specific advice to certain patients, but the specialist does not have the time to explain the complex issues involved in the treatment of this specific patient. One can always ask both the treating specialist, as well as the pharmacists of the pertinent supplier. There are also pharmacists who themselves are patients being treated for CLL - and they are available at the CLL society website.

[CoBubby]

These posts make me concerned about what is factual. Best to ask your specialist and also call Biologist or whomever provides your Ibrutinib. There could be medical reasons that some items that are 'forbidden' for some, and have nothing to do with Ibrutinib.

[bhayes84]

Here's an online checker at Drugs.com.

drugs.com/interaction/list/...

[Justasheet1 in reply to bhayes84]

I guess that I’m fortunate. My ibrutinib comes from Diplomat Specialty Pharmacy. They gave me a 1-800 number to call. I’ve used it twice when given meds and am quickly connected to a pharmacist who verifies compatibility between them for me.

It is so reassuring.

Jeff

[bhayes84 in reply to Justasheet1]

I also use Diplomat but somehow I never got a list of supplements to avoid. It was in this forum where I heard St. John's Wort is contraindicated.

[Jonfam in reply to Justasheet1]

I also get my Ibrutinib from Diplomat Pharmacy. Have been getting it there for four years. To bad the cost is so high. I do get nosebleeds on occasion but no other side effects except my hair, straight in some areas and curly in others.

[tryandtry]

Lots of answers here, and good advice all (except I never had any problems with bananas - even @ 1/day).

HOWEVER, the #1 thing to avoid is AFIB. I got it, and wound up needing mitral valve surgery. I don't think you can do anything to actually avoid it, but watch for it (possibly get a monitor), and schedule visits with a Cardiologist every few months. That may not always be cheap or easy, but it's a LOT better than heart surgery. [Note - Imbruvica has a listed Afib incidence of ~15%]

Gary

[SamanthaJane123]

Has anyone ever been told not to drink too much green tea? In addition to grapefruits, seville oranges and several supplements my pharmacist said to be watchful of the amount of green tea I drink; no more then one cup of green tea a day. I think this is odd and will double check with the CLL specialist doctor.

[kathymac52]

Hey Scott, I am a great cook ( just ask my hubby)...I would make you pancakes, or quiche, or cheesy scrambled eggs, or oatmeal with cut up apples and walnuts, omelets with peppers, mushrooms, onions, and ham......He is very spoiled! I love to cook!!! Come for breakfast (or dinner).....anytime! Glad to see my buddy back!

[mrsjsmith]

Another girlfriend Scott,

And this one can cook 🙂

[TimHB]

My clinical trial docs banned only grapefruit and Seville oranges. They approve regular oranges, blood oranges, bananas and pomegranate - all of which I eat.

[bali103]

when i first started on ibrutinb i could feel my heart beatin hevey they thought i might have to come off it , always happend after breakfast so one day i cut out coffee heart went back to normal and iv never had coffee again