Benign Neutropenia

[revchris5802]

Hi everyone, I have not had a diagnosis in 7 months and am worried. I don't fit any of the categories. I was diagnosed first with LGL Leukemia, but when they did the bone marrow bx they did not find any trace of it. What they did find was 10% blasts, but they are not dysplastic. They have tested me for everything form myeloma to genetic disorders to immune disorders, but nothing fits. However, my WBC is 1.5, neutrophils .3, platelets 73K and hgb. 9.8. All cell lines are affected, and while I do have mouth sores, and an ongoing infection in the genital area, I only have minor fatigue and headaches. I've had no treatment yet, but I worried about how long I can live with severe neutropenia and not be treated. Anyone else out there defy the categories? I'm in Rochester NY but I've had my blood results sent out to Stanford for a second opinion. I do not have fevers.

[evansmom]

Did they tell you what your marrow cellularity was? This looks like aplastic anemia and perhaps your white count/neuts are lower than the other counts because of your ongoing infection. Could a neupogen shot every few days for a few months help you get over the infection? It's hard on the body to continually be in 'fight' mode. I assume you're on an antibiotic right now? Are the mouth sores canker sores as these are a typical finding in neutropenia?

[sbk007]

Originally Posted by revchris5802

Hi everyone, I have not had a diagnosis in 7 months and am worried. I don't fit any of the categories. I was diagnosed first with LGL Leukemia, but when they did the bone marrow bx they did not find any trace of it. What they did find was 10% blasts, but they are not dysplastic. They have tested me for everything form myeloma to genetic disorders to immune disorders, but nothing fits. However, my WBC is 1.5, neutrophils .3, platelets 73K and hgb. 9.8. All cell lines are affected, and while I do have mouth sores, and an ongoing infection in the genital area, I only have minor fatigue and headaches. I've had no treatment yet, but I worried about how long I can live with severe neutropenia and not be treated. Anyone else out there defy the categories? I'm in Rochester NY but I've had my blood results sent out to Stanford for a second opinion. I do not have fevers.

Were those your counts 7 months ago?, they could be different now.
If you haven't been back for a checkup in 7 months it might be prudent to do so.
I don't think anyone here would ponder a guess at how long you can let this go untreated. Its probably not a great idea to wait for it to get worse. Roswell Park in Buffalo might be an option. Take Care,
Steve

[Marlene]

Aplastic Anemia is usually diagnosed after they rule out everything else. So I would be inclined to consider it as a possibility also.

[Lbrown]

Yes, I don't seem to fit anywhere either. My neutrophils have been below 1 since November, before that they were below 1 from June 2012. I only had 1 count taken in Nov where they were 1.2, and since Feb they have been around 0.3.

Mine *seem* to be related to gluten, but it's too early to tell yet.

I had the flu a couple times this winter and recovered at least as well as everyone else.

Feel free to send me a private msg if you want more info.

Deb

[Cheryl C]

I had chronic idiopathic neutropenia ranging from mild to severe for about 6 years before being diagnosed with MDS 2 years ago. Although I have pancytopenia my biggest problem is still low white cells (WCC 1.2, Neut 0.46, Lymph 0.43, ANC 460 a couple of weeks ago). Like you I feel reasonably well most of the time.

I find I can manage quite well by avoiding sugary food and taking Echinacea at the first sign of a sore throat, Cranberry at the first sign of a UTI, regular exercise and a healthy diet. I think the gamma globulin infusions might help my immune system, even though they're not specifically for MDS.

I wish you all the best as you try to seek a diagnosis.

[revchris5802]

Hi everyone, Thanks for your replies. Those labs are my most recent labs from last week. They test them monthly unless something comes up. They already ruled out Aplastic Anemia, it doesn't fit the categories for MDS or MPD, although they were hesitant to say it couldn't be that.

I've had three rounds of antibiotics but nothing currently. If I get a fever, then I am supposed to show up at the hospital and get IV antibiotics and probably GCSF. They are hesitant to use it now as they don't want to stimulate the wrong thing until they know.

I've just had some purpura and nose bleeds so they tested my coags but they are normal too.

[Cheryl C]

Re administration of GCSF, that figures - my specialist would not allow me to have either it in case it increased my blast cells.

[Chirley]

Same here. Even when my neuts were zero.....no GCSF.

[KMac]

I too am neutropenic from AA with low WBC (this week WBC 1.3, ANC 560, Lymph 550), but with a good response in other blood lines. I've had 30+ shots of G-CSF, but want to refrain from those, as this neutropenia is somewhat of a mystery, and we don't want to stimulate the wrong thing.

Also, I rarely get sick, and when I do it tends to raise my ANC over 2000, which my doctor sees as a very good thing. I came in last month with a sore throat. He was about to give me antibiotics, but we then saw my ANC was 2040, and my sore throat cleared up on it's own.