Food! : Hi ,can anyone help ?, I’m not very... - CLL Support

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Food!

Workers profile image
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Hi ,can anyone help ?, I’m not very clear on what I can and can’t eat on ibrutinib ,I’m told no cream cheese ,sorry to sound dim but I call Brie soft cheese (not cream cheese) are these one of the same ?also no pate’ so does this mean no liver ?,I understand the Seville oranges lol, so if anyone knows of anything else could you please enlighten me .

Many thanks

Sue

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Cllcanada profile image
CllcanadaTop Poster CURE Hero

If you are neutropenic, you must be careful of some foods, but generally on ibrutinib, it is no grapefruit or juice, no Seville organges or marmalade, nn starfruit, no pomegranate juice, no St. John's Wort...

Need to be very careful of pro biotics and some ptobioic yogurts...

Here is a good listing, you should read and bookmark.

hillman.upmc.com/patients/c...

In North America, no Romaine lettuce... and be caucious of takeout, deli counters and buffets...

~chris

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply toCllcanada

Cllcanada link doesn't show.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toMsLockYourPosts

hillman.upmc.com/patients/c...

Workers profile image
Workers in reply toCllcanada

Thank you so much this is really helpful ,although it says somethings I don’t want it too !!

moon21 profile image
moon21 in reply toCllcanada

This is really helpful thanks . However This conflicts advice I have been given - I’ve been told fresh fruit is fine so long as skins washed well or peeled ? And I have been told no tap water? I wish it was more consistent advice .

AussieNeil profile image
AussieNeilPartnerAdministrator in reply tomoon21

There are a number of neutropenic diets which vary somewhat in their recommendations. Just bear in mind that what they are attempting to accomplish is reducing your intake of dangerous bacteria while still trying to maintain good nutrition. Even well people can become ill, but our compromised immune systems make infections more likely and harder to overcome.

With regard to raw fruit and vegetables, any bacteria isn't going to be killed by heating, so you need to ensure there's a low likelihood of significant contamination. That means thick rather than thin skinned fruit and vegetables and avoiding anything bruised or damaged.

Here are a couple of pinned posts on neutropenic diets:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

With regard to tap (reticulated) water, it probably depends on how well your local water supply authority maintains water quality along with the quality of the plumbing in your residence. The water quality of other sources will also vary, so you may need to filter, boil and then cool your drinking water.

I've been neutropenic for nearly 10 years, averaging under 0.7 for the last 7 years and dropping down to under 0.3 occasionally. For some of that time I lived in the country where I relied on rainwater for drinking, so I needed to filter and boil it, but I've never needed to do that with reticulated water.

Neil

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer in reply tomoon21

I think some might depend on how neutropenia one is. I usually see no fruit unless it has thick, peelable skin, like oranges or bananas. Of course, if you don't wash the fruit before cutting into it there would still be a risk. One friend, while in the hospital, was only allowed one brand of bottled water. Others have been told that peeled fruits and tap water are O K. It does get confusing.

Lola69 profile image
Lola69

Gorgonzola was off limits during my FCR Tx NOT SURE if safe with imbruvica

lankisterguy profile image
lankisterguyVolunteer

There is a lot of good information here, but I think the original question got lost in it.

-

Foods to avoid while on Ibrutinib is one question. (Seville - bitter oranges, grapefruit, and some other fruits that have a CYP inhibitor see:

webmd.com/drugs/2/drug-1654... )

-

And the question answered in several replies is what to avoid if you are neutropenic (i.e.: your neutrophils are very low - typically below Neut# of 0.5)

see: lls.org/managing-your-cance...

-

The foods to avoid in this instance are those with high risk of fungal, bacterial or other contamination of your digestive tract. So cheeses like Brie, Gorgonzola, Roquefort that are inoculated with specific molds or bacteria and then aged are normally excluded. As are raw fruits and vegetables where the outer skin has not been removed. And things like probiotics where live bacteria or fungal organisms are consumed.

-

These are two different situations and you can have one or the other, and only a few patients will have both issues.

-

Len

AdrianUK profile image
AdrianUK in reply tolankisterguy

You can develop neutropenia when on ibrutinib. And even if you don’t your immunity will be a bit impaired. So people do vary a bit in how much of the neutropenic advice they follow. If on ibrutinib there are some foods that must be avoided at all times as you rightly point out as they interact with the treatment.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Imbruvica (ibrutinib) interacts with CYP3A.. so read the page on the follow link

cancerresearchuk.org/about-...

Some foods and drugs affect CYP3A

They can affect the amount of cancer drug that you absorb. This means that your doctor needs to change the dose they prescribe for you. This can affect how your cancer drug works, making it stronger or weaker.

Foods to avoid

Grapefruit is one of the most commonly mentioned foods to avoid - there is a substance that blocks (inhibits) CYP3A. But this substance is also found in other fruit.

grapefruit and its juice

seville oranges

pomegranate

star fruit

Drugs

There many different types of drugs that may affect how CYP3A enzymes work including:

certain antibiotics

some chemotherapy drugs

anti fungal drugs

hiv treatments

drugs to stop fits (anti convulsants)

drugs called calcium channel blockers

anti depressants

statins

steroids

Herbal supplements

There are also many different herbal supplements that affect CYP3A enzymes, including:

St John’s Wort

Black cohosh

Ginseng

Ginko biloba

Goldenseal

If in doubt seek the help of a CLL specialist hemaetologist

~chris

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