Neutropenic diet

[Chirley]

I have a question.

I have had different advice from two different hospital dietitians and now I'm confused.

The first one told me not to have soft serve ice cream, home made ice cream, soft cheeses, cold meats (ham, salami), yoghurt or probiotics or nuts. The second one said that they were all okay.

I wish they would consult with each other before handing out information to the patients.

[Cheryl C]

Hi Chirley

As a fellow neutropenic I eat probiotics and nuts. Sugar is a recipe for a sore throat for me and dairy gives me sinus problems. Not sure about the meat as I'm a vegetarian who occasionally indulges in fish, but I seem to recall that cold meats are often the culprit when you hear of salmonella outbreaks.

[Marlene]

This article may help.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228185/

Regarding lunch meats....There have been periodic outbreaks of listeria from some of the packaged lunch meats. And soft serve ice cream...the risk is that the store selling it may not adhere to good cleaning practices of the machine and if the ice cream is exposed at the the end of soft serve spout for long periods of time, it can go bad.

[Birgitta-A]

Very good article Marlene!

Since I had severe neutropenic fever after three infections 2007 I always live like I have neutropenia even when my WBC are normal ecxept that i have a persian cat and flowers in my apartment. I control my temp every evening.

I never eat soft ice cream, soft cheeses, cold meat, fish etc or nuts that are not boiled. I like yogurt and probiotics.

The latest 7 years I have had neutropenic fever twice - once when I started to take Thalidomide and my WBC decreased and once when I had got a severe intestinal infection in my summer house when the mice had moved in for the winter.

I think that all three infections were caused by my own throat bacteria - they never found the focus but the fever decreased at once with antibiotics.

Then our neutrophils have different quality - mine are dysfunctional like my platelets. When I came to the ER the second time my neutrophils were 0.6. That is really not very low but at that time I was taking Prednisone too that decreased my ability to fight infections.
Kind regards
Birgitta-A

[Chirley]

Thank you that was an interesting article. I couldn't quite understand how when I had zero neuts I was never placed on a special diet but now that they are between .5-1....I received a specific visit from the dietitians to be told to start a neutropenic diet. At the same time I'm sharing a room with an Infectious Diseases patient!

I did notice in the article they did mention that yoghurt was to be avoided as part of a neutropenic diet though. Even though the conclusions found little evidence that the diet was of any help.

Birgitta you mentioned dysfunctional cells. Do you know if neutrophil function can be assessed on a differential (smear)? I was wondering if maybe my neutrophils had changed shape or something to account for the sudden concern about my diet and the visit from the nurse in charge to say that I should have been under protective precautions. This happened on my discharge day.

[SLB]

Hi Chirley, when I was neutropenic, and post transplant I was told no deli meats, no buffet food, no salads from restaurants etc, no soft serve ice cream, no soft cheeses, no mayo (due to uncooked egg yolk), no runny eggs, no undercooked meat, etc... However never heard no yoghurt and all through my chemos, & transplant when my neuts were 0, I ate yoghurt just about every morning.. It was one of the few things I could eat. But I do agree, different hospitals have different guidelines. It is frustrating to get a clear idea. Good luck.

[Marlene]

Glad you both found the article useful.

I think that people with MDS may have less efficient blood cells than those with SAA. I have nothing scientifically to back up that statement though. It's just what we observed in John. We found his own platelets worked better than transfused ones and when his ANC was below 1, and it was for quite long time, he did not contract any colds, the flu or infections. Went through two winters without an issue.

Why they sent a dietitian? I've got a couple of thoughts, a bit sarcastic though...I think sometimes they need to justify their positions at times, or maybe they see a billable opportunity, or they cannot deviate from standard operating procedures and everyone gets treated the same way. Instead of finding out what the patient needs by speaking with them, they do what they want to do. The fact that you've been dealing with this disease and I doubt most of them have ever met anyone in your situation, they should be able to adjust their approach to your level of knowledge and experience. I found most dietitians/nutritionist associated with hospitals have a very narrow view. I don't think they saw anything new in your labs that would prompt them to now initiate a neutropenic diet. Just my opinion of course.

They may also be covering their bases since they did not take the necessary precaution while you were in the hospital. The nurse who noticed, probably brought it the attention of the staff which prompted corrective action to address the situation. Hopefully they learned and will not put you with infected people again.

The one major caution John took was to wear a mask anytime he went to the doctor's or to get blood products. Lots of hand washing too.

[Birgitta-A]

Hi Chirley!
As Marlene said MDS patients with their dysplastic (malshaped) blood cells have more problems with dysfunctional cells.
http://www.cpsa.ab.ca/Libraries/Pro_...o_critique.pdf

I think you have been lucky living during long periods hardly without neutrophils at all - most MDS patients should have got severe perhaps fatal infections.
Kind regards
Birgitta-A

[Marlene]

Thanks for the link Birgitta-A.

[MissDaisy]

Here's a page I find helpful. Of course check with your health care provider and follow their directions. I've never been severely neutropenic although I came close once. I tend to wash my hands a lot. When we have flu or colds floating about I wash my hands and use paper towels to dry my hands.

Link: http://www.realnurseed.com/t1000.htm

I don't empty cat litter boxes and I wear gloves when cleaning or gardening. I do wear a mask when I am in high risk settings such as the doctor's office or in crowds.

My lowest known ANC was about 400 and I normally run around 1200 ANC.

For whatever reason my last reported WBC was 3.2 and I don't know my ANC as the nurse forgot to order the differential. At a good guess my ANC is probably around 1900 which means things are very good.

[Birgitta-A]

Interesting MissDaisy!
Kind regards
Birgitta-A