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Old Fri Apr 28, 2017, 03:05 PM
lcl lcl is offline
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Join Date: Mar 2017
Location: Denver, CO
Posts: 4
RE: Hope's questions...
1. Genetic Testing - All tests were ordered and completed and were negative for the major genetic causes. Diagnosis remains idiopathic VSAA.

2. He does not have any sibling matches which is why they went to immunosupression. They have entered his criteria National Marrow Donor Program. He does not have any "perfect" matches but there are several suitable options, though not ideal.

3. Regarding back up plans there are several courses of action we may consider which include 1) another round of hATG 2) a round of rATG 3) hATG supplemented with Eltrombopag/Promacta 4) Non familial BMT or 5) familial non matched BMT.

Its still only the 10 week mark and he has had a very slight lift in ANC from .02 to .10 - .12. His platelet and hemoglobin transfusions are still weekly at a minimum and sometimes platelets 2x per week.

Each course of action has serious trade-offs and BMT can lead to host/graft issues and once you go that route you can't go back to immunosupression. On the flip side, the longer we try immunosupression and he remains neutropenic the more prone to fungal, bacterial and viral infections he becomes.

No great choices at this point but he has good doctors so we will be able to make a fairly well informed decision in the coming months if the first round of immunosupression doesn't kick in.

Hopefully we see a spike in counts over the next 3-4 weeks or its back to the drawing board.

RE: AMZ's post: Thanks. That does give some anecdotal evidence that for some people this takes closer to 6 months to really kick in. We are finally seeing some very small lifts in ANC but nothing dramatic yet. The hospital actually has a web portal with all of his test results charted and graphed. I was tracking it in excel but we got signed up for the website which is a great tool. I haven't been tracking the infusion units, just the counts, but I believe all of his infusion orders are tracked on the website as well, I will check. Good idea to not only track the counts but what they are pumping in. I can say without getting into the numbers that its been fairly consistent, some weeks are better than others but its been pretty steady. Glad to hear that the treatment worked for you with no relapse. That is our concern right now. All the other treatments carry alot of additional risks that can lead to new complications down the road.
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Pediatirc VSAA - hATG

Last edited by lcl : Fri Apr 28, 2017 at 03:17 PM.
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