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Old Fri May 3, 2013, 04:44 PM
KMac KMac is offline
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Join Date: Oct 2012
Location: Golden, Colorado
Posts: 103
Hi NLJabbari,

Thank you for the thoughtful reply! It sounds like your son and I have different yet related problems with our blood counts post-ATG. I am glad he had a multi-year remission after ATG, and that his WBC and platelets are so high. Yet I know firsthand what it feels like to have an Hgb of 8.3 and I really feel for your son there - I found it very challenging to be anemic.

I understand red blood growth factors are typically not recommended in SAA, but since it is just his red blood that is an issue, I wonder if one of those could be of help in raising his Hgb? Has your son's erythropoietin level been taken? Perhaps when that is low, a red blood growth factor would help.

I identify with your frustration about cyclosporine dependence. Since Csa hits the kidneys, I wonder whether that could retard Erythropoietin production, thereby exacerbating anemia in some patients.

One thought on a second course of ATG when only one cell line has crashed - my parents attend an AAMDS support group in New Jersey, and they posed that question there (important note, these are patients, not doctors). But the thought in their group was that a second ATG seemed odd when only the white blood is low, since ATG hits the white blood count so hard, yet if just blood or platelets were low, the patients there thought a second ATG would make sense.

I have contacted AAMDS, and found their materials to be very helpful. I think I have a good list from them of hematologists I'd like to contact with my questions. AAMDS was the first place I learned that my long-term neupogen administration was unusual.

AAMDS had a video of a talk given by an Irish hematologist, I forget his name offhand, saying that long-term neupogen is not indicated in SAA because even if it produces a response, it has no long-term benefit (and perhaps risks), but either way it just is a stopgap preventing the patient from getting the treatment they really need. Dr. Young at NIH published a paper last year, where if I understood correctly, he was even saying the same thing about long term Cylosporine use (I will try to find these links and post them here).

But then, the huge question for your son and I is - what exactly is the treatment that we need? Since 2 out of 3 blood lines are doing well for us, we seem to be in this weird sort of holding pattern.

As for my vSAA/SAA diagnosis, they never really said exactly, I think because I was right on the cusp (ANC < 200, with pancytopenia, means vSAA I believe), and either way the situation was dire and treatment was needed ASAP. My ANC did fall to 0 during ATG administration.

This is such a strange disease. Here are just a few of the many patient anomalies I know of:

1) A vSAA diagnosis gives a poor prognosis in the literature, yet I know a patient who had an ANC of 0 at diagnosis, who responded very well and very quickly to ATG, without any serious infection or complication.

2) A low reticulocyte count at diagnosis is a poor prognosis. My reticulocyte count was almost nonexistent at diagnosis, and my reticulocyte count still runs low. Yet that is the cell line in which I've had the most robust recovery, raising Hgb from under 6 to over 13.

3) My lymphocytes have never recovered. They were well into the normal range pre-ATG, and now run below 500. Of course, those include the nasty aberrant T-cells presumably causing our disease, so we aren't as worried about those being low. Yet still I find it strange, I have not found any other SAA patients who responded to treatment, yet whose lymphocyte counts stay low 1 year + post-ATG.

I wonder whether clues to better treatment lie within these strange anomalies so many of us SAA patients exhibit.

I will keep you posted via this thread on what I learn (or start a new thread), and would be happy to talk with you and your son via email or phone sometime if you'd like (my email is kevin_mcnamar@yahoo.com). We have an aplastic anemia support group here in the Denver, Colorado area, if you are ever in the area. I will be thinking about you and your son, and hoping we both find solutions to make us 3 out of 3 instead of just 2 out of 3!

Best regards,
__________________
Kevin, male age 45; dx SAA 02/2012 - Hgb 5.8, platelets 14, ANC 200, 1% cellularity. Received ATG 03/2012. As of 03/2015, significant improvement - Hgb 15, platelets 158, ANC fluctuates around 1000, Lymphocytes 620. Tapering cyclosporine. BMB 20-30% cellularity.
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