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Old Wed Mar 16, 2022, 11:48 AM
Matthew42 Matthew42 is offline
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Join Date: Jul 2021
Location: USA
Posts: 130
@ mola-tecta: Yes, I know it was the hematologist who was harping on your mother's ferritin levels. My mother's doctor is the opposite: while she mentions it, she isn't concerned it about now, as I already said. Hematologists have different views on iron overload (what's dangerous, when to treat, etc.). My mother's ferritin levels actually dropped 500 points when she was tested 30 RBC transfusions ago. The doctor was happy to see that there was a drop.

That mutation in your mother's bone marrow could quickly change. I've seen people on here whose cytogenetics change a lot from one biopsy to the next. So, it could be nothing at all.

I forget to tell you that at our last appointment, we were told that my mother is not likely at all to get PNH, even though she has a tiny PNH clone. The doctor told me to not to worry about it, even though she can't rule it out completely. She also said that my mother has about a 15% of getting some subset of MDS. That's another reason to stay away from the rabbit-alg, as it can bring about chromosomal changes to the bone marrow. Campath doesn't affect the bone marrow.

My mother's last bone marrow report was fine except for a small amount of dysplastic red blood cells. The doctor said not to worry about it, as it is normal to have tiny amounts of dysplasia in bone marrow biopsies, even with people without bone marrow disease. A lot of people have very small amounts of dysplastic white blood cells, too (there's a normal range for this). Dr. Young never considered it as anything when he looked over her bone marrow biopsy. She has classic aplastic anemia that is highly immune-mediated. That's what we were told.

I have a hard time understanding chromosomal changes in bone marrow. It takes a lot of research, and you also need someone with background in research hematology to assist when you get figure it out. Where do you get that but Dr. Young's team at the NIH? LOL.

Your mother is doing so well. She is getting better, even though it's hard to have hope when it takes so long to get better.

Finally, my mother's hematologist left the room last week, saying: "It's a very bizarre and unpredictable disease...no two aplastic anemics are alike."

Take good care of yourself.

Last edited by Matthew42 : Wed Mar 16, 2022 at 12:14 PM.
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