white cells aren't growing

[bolotin]

I was diagnosed with Myelodysplastic Syndrome several years ago and was stable for a couple of years. In June of 2019, I was hospitalized and got a bone marrow transplant from an unknown donor. My white cells were the cancerous ones. I was told that, after 6 months, the white cells should be fully growing. However, my "new" white cells never started growing on their own, and it's been 6 months. The doctors don't know why. I am curious if anyone else has/had a similar problem and what's being done about it.

[Richard Lin]

Sorry to hear that - sometimes it could be due to GVHD, infection, or an immune-mediated process. You can ask your doctor whether a "stem cell boost" is needed.

[DanL]

have they been giving you any GCSF like neulasta or neupogen? I have yet to have fully normal levels of white cells consistently and I am 5 years post transplant and generally run under 3 total white count with little real impact to me.

[Cheryl C]

Hi Bilotin - sorry I can't advise on that one except to say that I've lived with white cells down below 2.0 for years. They're currently 1.0 which is a slight improvement. There's a lot you can do to prevent infections.

Hi Dan - I just read your signature block. How are you feeling? 80% Peripheral neuropathy sounds very uncomfortable.

I just started Azacitidine today. No problem so far except that the injection sites are inflamed. Will see how I am in a week!