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Old Mon Mar 20, 2017, 04:07 PM
lcl lcl is offline
Join Date: Mar 2017
Location: Denver, CO
Posts: 4
Time for ATG to show first signs of effectiveness

Curious to hear some anecdotal comments about response time to hATG for VSAA.

How long did/does it take to see the first signs that the immunosupression is working?

These are ANY results, not definitive rebounded counts but the time elapsed before even the first sign that the treatment is having some effect.

Last edited by lcl : Tue Mar 21, 2017 at 05:22 PM.
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Old Fri Mar 24, 2017, 10:06 AM
Margaret W Margaret W is offline
Join Date: Dec 2015
Location: Michigan
Posts: 31
It took about 4 months for the hATG that I had to cause a tiny uptick in my counts, but the full effect didn't occur for a couple of years. I was still having weekly transfusions two years later. I think everyone's bone marrow and disease react differently to ATG.
Margaret, SAA patient diagnosed 1972; ATG 1987; moderate AA for years; hep. C from transfusion 1987; now SAA is back.
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Old Sat Mar 25, 2017, 08:57 AM
jef dk jef dk is offline
Join Date: Mar 2017
Location: slagelse denmark
Posts: 2
For me it took 3 months before the first signs of improvement. And. I am still on a slowly increase of my count after 11 months.
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Old Sun Mar 26, 2017, 06:36 PM
rmcrob rmcrob is offline
Join Date: Dec 2016
Location: Indianapolis, Indiana
Posts: 1
I had an ATG treatment about a month ago. Just a few days after the treatment my HGB surprisingly jumped up to over 11 from about 9. Then over the next couple weeks it drifted back down to 9ish.

Looks like it is a matter of waiting. Lots of things in life are like that, aren't they?
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Old Mon Apr 17, 2017, 03:09 PM
lcl lcl is offline
Join Date: Mar 2017
Location: Denver, CO
Posts: 4
Thanks for the feedback. My son had hATG 8 weeks ago for idiopathic VSAA. He is receiving transfusions 1-2x per week and his ANC is hovering between .00 and .05. His counts and transfusion dependence have not improved at all. Its reassuring to know that some people don't see any, even slight, improvements for months. Regardless, I was expecting to see a little something by now. The waiting game continues...
Pediatirc VSAA - hATG
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Old Thu Apr 20, 2017, 01:56 AM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 715
Hi lcl,

Has your son been tested for the genetic causes of VSAA?

Have they started the transplant search? Do they have a plan to move to transplant after a certain number of months?

It would be good to have a back-up plan ready, should it be needed. A transplant may be the required cure.

I do hope you see some sign soon!
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Tue Apr 25, 2017, 01:34 PM
Amz904 Amz904 is offline
Join Date: Apr 2014
Location: Atlanta, GA
Posts: 13
Hey lcl,

I was diagnosed with VSAA in December 2013, and received hATG+cyclosporine the first week of Jan 2014. The first few months were really difficult, and it was even worse getting my labs everyday and not seeing any real improvement. But don't get discouraged! You just need to keep reminding yourself that it is a slow process and just need to take it one day at a time.

Here's a chart I made of my counts from Feb-July 2014. I stopped adding to it since after july I was finally transfusion free and things have gone up hill ever since

WBC (range per month)
feb: >0.1-0.1
march: 0.2-0.4
april: 0.5-0.7
may: 0.8-1.1
june: 1.2-2.1
july: 2.2-2.9

ANC (what it was at the end of each month)
feb: 0.02
march: 0.10
april: 0.27
may: 0.59
june: 1.25
july: 1.74

RBC (units per month)
feb: 14
march: 8
april: 3
may: 2
june: 2
july: 0

Platelets (units per month)
feb: 9
march: 6
april: 5
may: 4
june: 0
july: 0

So around the 12 week mark (end of march) is when I noticed a positive trend in my counts. I definitely recommend keeping track of how many units of RBCs and Platelets your son is getting every month. For me personally, it felt like I was getting the same number every month, but when I actually counted I realized I was slightly improving every month. When my doctor saw my blood counts in May he honestly wasn't too impressed and wanted to go forth with a bone marrow transplant, but when I showed him how many less transfusions I was getting a month, he changed his mind and decided to wait and see for another few months. I'm so glad he did, since I'm doing great ever since!

Also I had one of my doctors tell me in the hospital, that slow responses can actually be a good thing since in his experience those with slower responses were less likely to relapse later on vs those patients whose counts recovered very quickly after ATG. Not sure how true that really is haha, but thinking about that kept me positive during my slow recovery

Good luck to your son!
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Old Fri Apr 28, 2017, 03:05 PM
lcl lcl is offline
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.
Pediatirc VSAA - hATG

Last edited by lcl : Fri Apr 28, 2017 at 03:17 PM.
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Old Sat Apr 29, 2017, 05:41 PM
mharrell mharrell is offline
Join Date: Dec 2008
Posts: 11
My son had ATG for AA almost ten years ago, right after he turned 18. It took a good six months to kick in.

Edited to add: He hasn't relapsed. However, following the ATG, he was on cyclosporin for a long, long time - two years, if I recall - with a very, very slow taper.
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Old Tue May 23, 2017, 01:34 PM
lcl lcl is offline
Join Date: Mar 2017
Location: Denver, CO
Posts: 4

Well, its been 14 weeks and the results of the most recent biopsy show a cellularity of ~20%. While better than the 10% that was tested in January the doctor noted that the marrow is more or less unchanged. No clonal issues at this point which is good. We have no sibling matches and no perfect unrelated matches so the 2 choices are haplo BMT or hATG with PROMACTA and cyclo. We are going to parallel path and start a 2nd round of ATG in 2 weeks and this time add the PROMACTA (Eltrombopag). The BMT team will start working up a protocol now and we will give the next round of IS another 3 months to see if it takes. Tough call given VSAA with ANC sub .10, weekly transfusions and high end on the neutropenic spectrum but supportive care thus far has been working well with only a few hospitalizations. Will provide an update 6 weeks into the new IS with PROMACTA added, hopefully it spurs the marrow to start growing back.
Pediatirc VSAA - hATG
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