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Old Thu May 5, 2022, 12:12 AM
Matthew42 Matthew42 is offline
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Join Date: Jul 2021
Location: USA
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Quote:
Originally Posted by Neil Cuadra View Post
"I don't know" might have been a better answer than this semi-explanation. I don't think bone marrow "decides" anything. It's a biological process, admittedly very complicated, but there must be undiscovered factors that are causing these roller-coaster changes.

With all the past patient experiences and collected knowledge about aplastic anemia, it must be so frustrating to have so little idea of what's going on with your mother's blood counts!

Thank you for responding. That is very kind of you.

You're right, Neil: I think the doctor meant that the immune system backs off a bit and then starts up its attack suddenly. I don't know, either. LOL. She is not an expert in the disease. She consults with Dr. Young to get info on further treatment.

My mother's counts are very, very mysterious. "Roller Coaster" changes is really an understatement here. In fact, her hemoglobin shot up to 12.8 from 7.8 and crashed down to 7.7 in 5 days. The nurse thought the rise in hemoglobin was a lab mistake, but the RBC amount was 4.2, so the doctor says it was indeed her real hemoglobin level. Highly unlikely of it being a lab error when hemoglobin and RBC match. What is even more mysterious is that her neutrophils went down to 200 when her blood went up to 12.8! My mother's doctor just is more than baffled, but really everything is just "I don't know really." But do know that her platelets have never shown any improvement (no rises or swings).

We're just going to wait a few more months or so.

Also, Dr. Brodsky from John Hopkins thinks that Campath might not be the route to go if things don't improve. He recommends high-dose Cytoxan, and believes that it has the highest chance of getting her over the anemia. He says he has had great success with this drug in patients with refractory/relapsing SAA. We might go with this doctor, too. , even though Dr. Young recommends Campath. Dr. Brodsky is a big fan of high-dose Cytoxan, if you read about him.

It's an emotional roller coaster for me. I don't know what to think anymore. She has been getting less blood these past few months because of the big rises (she holds longer), but it makes me very nervous as there is no stability. It's just all so bizarre.
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