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