neutropoenia

[Tereze Gluck]

I have advanced, High-risk chemo-related MDS. As bad as it can be. I’ve been getting platelet and red cell transfusions , but my question is – how to handle neutropenia? I’m now in the hospital with high fever, abdominal cramps, massive IV antibiotics. I eat carefully – neutropenia diet – but the drs explained that when your neutrophils are so low, you develop infections just from the normal bacteria in the gut. (Can’t say I fully understand this.)

But I’m wondering – how do others handle neutropenic fevers? There doesn’t seem to be any way to increase my white cells – neupogen caused an increase in blasts.

So here I am with near zero neutrophils, subject to spontaneous infections and fevers. How does one handle this? I eat carefully, don’t go out in crowds. Is there anything I can do to avoid these fevers and infections?

[Michael]

I was diagnosed in June 2016. Initial diagnosis was medium risk with blasts at 6%. Follow up biopsy at Center of Excellence in July 2017 downgraded to low risk 1% blasts. Annual follow up biopsies at C of E show no progression of disease.

Monthly blood draws are stable low wbc (1.5ish), rbc (4.2),hgb (12), platelets (175). ANC is always 500 or lower so I’m generally always severely neutropenic.

In 2+ years I’ve been fortunate to only have one fever. Made it to emergicare with IV, chest X-ray, flu test etc. one dose of antibiotics. Final result, I had a cold.

I might just be darn lucky, but I wash my hands all the time, stay away from known sick folks, travel with an ionizer around my neck when flying, wipe down surfaces with Clorox wipes many times per week, carry Purel with me all the time. I do get skin infections which I keep clean, covered as best I can, wash with antibacterial soap. They are a nuisance for sure but so far so good.

At outset local hematologist used neupogen to raise my wbc. Also she often recommends a shot before I fly. Neupogen is not used as a prophylactic for exactly the reason you indicate. Otherwise I think I’d be taking it often considering I’m severely neutropenic. I’ve only had one dose of antibiotics in 2+ yrs. I thank my lucky stars most every day. One troubling thing is when the grandkids (8 of them) cough they have to stay away.

Best wishes.

[Tereze Gluck]

You’re lucky. Me, nOt so lucky. My neutropenic fevers not caused by infectious agents but solely from my own body’s gut bacteria. So not from food, or crowds, or someone who’s ill. So, completely beyond my control. All this confirmed by my urrent hospital stay. I’ve been super-careful, washing hands constantly, avoiding crowds, following neutropenic diet. My Neutrophils are just too low for my body to handle the normal bacteria in the gut. Deeply discouraged, as appears it’s going to be difficult to find a hospital willing to do transplant.

[Tereze Gluck]

Thanks for posting. I am much sicker than your descriptions. My numbers are much worse. I was just in the hospital for 11 days on massive antibiotics. I am very far from my previous ‘normal’ life. My white count never reaches 1. My platelets hover between 24 and 30+, I need frequent transfusions. Without s transplant I will not last long. Struggling to find s hospital that will do a transplant

[emwave]

Wow. I am so lucky. My docters recommend I return to shooting up with neupogen, but in spite of a critically low neutrophil count I have not shown signs of infection. One IMPORTANT comment: In a post above a writer said something to the effect of “I must be ok, as I don’t have a fever.”. Watch out. It is possible to get an infection an have no normal signs of disease. When your immune system is disfuctional, be aware the usual signs of infection may not show up.

[emwave]

P.S. I once wound up with a severe abdominal infection in hospital. I was under aware of the problem. Fortunately someone was and I woke up in hospital eventually to fully recover.

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