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Old Sun Aug 8, 2021, 01:22 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Quote:
Originally Posted by Matthew42 View Post
Dear JMonroe96,

I hope you are well.

My mother has severe aplastic anemia and just had another bone marrow biopsy done last week. She is getting her results tomorrow from the doctor. Her doctor is concerned that her horse-ATG is not working after 15 weeks, even though her neutrophils got close to 1000 for a few weeks and she went 2 weeks without blood last month.

The biopsy was done to see if her cellularity has increased. But I read that higher cellularity doesn't always equate to higher hemoglobin/platelet/neutrophil levels. Who knows, really? My mother's hematologist is quite negative and follows everything with a "textbook" mindset. She initially told her that she could be transfusion-dependent for 6 months or so post-ATG, but now is acting like she should have been transfusion-independent at 12 weeks. Again, who knows? I've already been told that some doctors wait 9 months or more after horse-ATG to declare it ineffective. I can't see her hematologist waiting much longer before she declares it ineffective. She fails to understand that my mother started out with only 5% cellularity before beginning treatment, and that she is almost 70 years-old. My mother already knows that she is probably going to have to get a second opinion.
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Hi Matthew,

Please who respond at 3 months are considered early responders, and it is usually taken as a good sign. If her transfusions are getting farther and farther apart, that is a good sign. If any of her counts start rising, that is a good sign. In my opinion, any good sign is considered a response. It is a good idea to track her counts in a spreadsheet so you can view the trends. Be sure to note her transfusions and any drugs that she starts/stops.

I have been told that the counts will rise before you see improvement in the bone marrow cellularity. It takes a long time for the marrow to recover. The goal of the ATG is to stop the attack on the marrow so that it can recover.

If your mom's doctor doesn't seem hopeful or is considering changing her treatment or stopping cyclosporine, I would seek a second opinion first. It doesn't hurt to have two doctors. Sometimes they will work together, if your lucky

Your mom is lucky to have such a great advocate for her.

Wishing you both the best!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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