How important is dietary restriction after neutrophil count has collapsed? Some studies suggest not to worry, just eat a balanced diet. If one were to compromise and just avoid the most risky foods, which would those be? Thanks.
BTW during a recent hospital stay for neutropenic fever with zero neuts, I was officially on a neutropenic diet but it seemed disjointed...eg I could not have a banana but could have lettuce salads.
AussieNeil followed a neutropenic diet for many years and can probably offer you some song advice PhotonPal.
Jackie
Thanks, I lean toward caution regardless of the newer studies.
Hi Photonpal,
You've been given good advice in your first replies, with some excellent references from lankisterguy . As Hawkeagle says, having lettuce salads and not bananas makes absolutely no sense. The standard advice is to avoid anything that can have high levels of bacterial contamination and prefentially eat fruit with thicker, more protective skins. I avoided salads but enjoyed all kinds of fruit (including bananas most days) after careful washing, though I avoided cut and bruised fruit (or cut the bruise out).
This is the best guide I've come across about neutropenic dieting. healthunlocked.com/cllsuppo...
The concern nowadays is ensuring adequate nutrition while taking precautions to avoid foods that could have high bacterial counts.
My biggest problems were avoiding infections from others and dealing with skin infections when prevention techniques failed.
Neil
Thanks Neil, and to all for sharing experience/views on foods during neutropenia.
Paul
High Neal, do you know any secrets to prevent skin infection?
I have low immunoglobulins and my neutrophils are very low. I am afraid that acalabrutinib will reduce my immune defenses even further. After the first couple of days I had terrible headaches and a flue like symptoms, skin blisters as well.
Honestly I am scared to change my fairly stable condition for many years to the unknown effects of the treatment.
If you take sensible precautions, you should be fine. Avoid going outside when biting insects are around, or wear protective clothing and insect repellent. Avoid activities where you are at risk of skin cuts and scratches, or wear suitable gloves and clothes. Wear protective shoes that breathe well to reduce your risk of fungal infections. Shower daily. If you have to shower away from home, shower wearing flip-flops/thongs. (I did that in hospital, despite having my own bathroom). Check for areas of inflammation on your skin when showering and monitor any you find. Any cuts or scrapes, treat with an antiseptic. (I used Betadine). You just need to get through the early stages when your bone marrow is further suppressed and before it begins to recover. Eventually, with your CLL suppressed and being reduced and the recovery of your neutrophil count, the immune suppressing effects of CLL against bacteria and fungi will lift, but you'll still be at increased risk of viral infections while you are under treatment and until your healthy B-cells recover.
Due to circumstances beyond my control, I started treatment about 2 months later than desirable. My bone marrow was really struggling. When I started on Acalabrutinib early last December, I became stage 3 neutropenic despite daily G-CSF injections, my platelets dropped from the 50s to under 30 and I needed two red blood cell transfusions. I was naturally rather concerned about skin infections, particularly when starting obinutuzumab infusions and then Venetoclax, but the only infections I got despite daily blood tests, were from cannula sites - cellulitis in both forearms. (I was having IV antibiotics for about half the day at that stage). My platelets recovered within 3 weeks of starting Acalabrutinib and before I started on Obinutuzumab. My neutrophils took longer to improve, but the IV antibiotics probably didn't help.
A few months ago, my doctor said that my immunity was better than before I started treatment (with the exception of viral infections). My IgA and IgM have remained stable and are better than they were a year ago. I have been on weekly subcutaneous IgG infusions for a few years, but they don't affect IgA and IgM.
Neil
Thank you, Neil. It takes a lot of bravery and partner’s care to go through it. I lost my dear husband to heart attack while we were on around the world cruise in the middle of the ocean. I am trying to stay positive but I lost a lot of motivation that kept me going for so many years... thanks again for sharing your experience and knowledge that comes with it.
Neil, thanks for sharing what worked for you to avoid infections while neutropenic. I have one question. You wrote:
"Eventually, with your CLL suppressed and being reduced and the recovery of your neutrophil count, the immune suppressing effects of CLL against bacteria and fungi will lift, but you'll still be at increased risk of viral infections".
Did you mean that one's ability to fight off bacterial infections returns roughly to 'normal', but the ability to fight off viral infections remains depressed? Or were you just acknowledging that viral infections are tougher to fight off even with a strong immune system? And if you meant the former, what is the reason for the higher risk of viral infections after the immune system recovers from treatment?
Thanks
Paul
My response was to Belkin123, who is on Acalabrutinib monotherapy, so I have qualified the sentence you quoted to be more generic to: "Eventually, with your CLL suppressed and being reduced and the recovery of your neutrophil count, the immune suppressing effects of CLL against bacteria and fungi will lift, but you'll still be at increased risk of viral infections while you are under treatment and until your healthy B-cells recover".
When you have even the precursor to CLL, Monoclonal B-cell Lymphocytosis, or less than a count of 5 (5,000) monoclonal B-cells, you are still recognised as having a degree of immune compromise. So until you reduce your CLL count below that - or gain sufficient suppression of the CLL through an inhibitor drug, you'll also have a degree of immune compromise. Many CLL drugs also impact on T-cell production and of course they eventually eliminate most, if not all healthy B-cells. That impacts on your ability to counter viral infections, particularly new ones.
Neil
As Jm954 says AussieNeil is our most experienced person on Neutropenic diet and you can read a thorough discussion from this posting 6 months ago: healthunlocked.com/cllsuppo...
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which then links to these two other detailed postings
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
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I found the first posting on this page, in the box labeled:
Related Posts
*Neutropenic diet
*Neutropenic lifestyle?
*Is there a simple blood test for neutropenic sepsis?
*Still neutropenic 5 months post FCR 
*CLL, infections and being neutropenic.
You can read many more useful replies by clicking on any of those postings. (Upper right column on computer screens, scroll way below on tablets or other mobile devices)
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Len
Thank you for all those references , Len.
Seems like the banana and lettuce are reversed. Maybe hospital doesn't really know? Banana pretty safe food when neutropenic. Lettuce not so much. I felt ok eating raw fruits or veggies that I could wash really well - as in scrub - like an apple. Or fruit that was protected by thick peel like banana or orange. Although I would scrub the peel before I peeled them so nothing could enter that way, in the peeling process. I avoided berries because they can't really be washed. I don't recall what I did about yogurt. Supposed to avoid yogurt when neutropenic, because of live culture... But I think I had some. The list of restrictions is substantial. I found I had to do what seemed reasonable to me. I think I did make Romaine salads because that lettuce is tough enough to actually be scrubbed. But basically I was a lot more cautious and restrictive in my foods than I would normally be.
Got it, thanks Kim.
When periodically neutropenic & on GSCF injections, I steer away from salads, soft fruit, soft boiled eggs, blue or unpasteurised cheese & cured meats - a lot of foods I love but sacrifices have to be made.
Neutrophils (again)
Diet options
Low Animal Protein Diet
Is a Keto diet helpful?
Ketogenic Diet and CLL
