Originally Posted by KMac
I am fighting SAA, and just joined the forums yesterday. I've entered more of my details under the 'Tell Your Story' forum.
In this thread, I'd like to expand further upon my experience with low WBC. In particular, I would really appreciate hearing from anyone:
a) With a similar low WBC post-ATG for SAA (i.e. good response in platelets and red blood, less response in WBC).
b) With experience using alternative treatment (i.e. naturopathic, oriental, etc..) to improve WBC.
I received ATG 3/07/2012. It has been a challenging 7 months, but I'm doing much better now. My remaining large issue is a very low WBC on my weekly CBC. My ANC is usually about 500, my lymphocytes about 350. I receive neupogen weekly.
I live near Denver, Colorado, and I'm treated at the Colorado Blood Cancer Institute (CBCI). My experience at this institution has been excellent. I highly recommend them. But in addition to my treatment at CBCI, I am considering alternative therapy.
Although my WBC is quite low (usually about 1.0), it has shown promise in the following respects:
1) Prior to horse ATG, my lymphocyte count was actually normal (i.e. well above 1000).
2) Prednisone after ATG led my ANC to rise in about 2 weeks from 0 to 630.
3) After the prednisone taper (2 weeks post-ATG), my ANC fell to 100. Neupogen administration began three times a week, and it worked almost immediately, albeit slowly at first.
4) I am on a slow trend to need less neupogen. I used to get neupogen on Friday, and my ANC would be around 500 Monday. In recent tests, my ANC has been near 1000 five days out from neupogen.
5) In July, I caught a fairly bad cold. While fighting the cold, my ANC rose from under 1000 to over 2800 on it's own without neupogen, and I did not need neupogen for about 3 weeks.
6) My bone marrow biopsy last month showed all normal white blood cells. Not enough of them to be sure, but no mutations.
7) Last month, we tried a test where I received neupogen, and then my ANC was tested again within 24 hours. It had risen from ~600 to over 8000! The neupogen even improved my lymphocyte and monocyte counts. My doctor sees this as a very good sign that I have white blood cells ready or near-ready to go in the marrow, but I have a mobilization issue (i.e. an undifferentiated stem cell wouldn't have time to turn into a fully developed neutrophil in the blood within 24 hours).
So in some respects, it seems I am close to surmounting this low WBC problem.
Thank you to everyone who read this long post! I had a lot of information to pass on.
P.S. I considered putting this on the Alternative Treatments forum, but thought AA was the more apt choice, since I appreciate any feedback on my WBC concerns, be it 'alternative' or otherwise!