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Old Wed Dec 8, 2021, 12:19 PM
Matthew42 Matthew42 is offline
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Join Date: Jul 2021
Location: USA
Posts: 130
Dear mola-tecta,

Again, your mother's neutrophils are absolutely excellent. My mother's are about 1000, which is a decent level for protection.

You can expect your mother's hemoglobin to be everywhere. Big drops are normal, too, even when there are big rises. Some people never have big rises while recovering - they just get little rises with stabilizing levels. The good thing about that is the need for less transfusions. Big rises and big drops, on the other hand, mean more transfusions, but it shows that the bone marrow is coming back to life in a big way; in other words, there is a lot or potential for the person to eventually reach a very high hemoglobin level at some point. That's how I read it.

Yes, we were told that age will lead to a much a slower recovery. But I was also told you can recover too fast. LOL. Again, you hear a lot of different things.

My mother did have a 5% increase in bone marrow cellularity a few months ago. The hematologist said that while this is low, it is still an improvement, showing a response to immunosuppressant therapy. But here's the kicker: greater cellularity in bone marrow doesn't always correspond with higher levels of red blood cells, ultimately. There is truth to that from my research.

My mom's hematologist is not that great, by the way...I just pull the info out of her. I force her to give me info. She's nice, but she's not very encouraging; in fact, she never was. For your information, she's experienced in treating aplastic anemia, but she's no expert (she said she wasn't). She also contradicts herself: she says, on one hand, that the treatment may not be working, but then says she thinks the Promacta is really helping things along with the neutrophils. LOL!!! She's goes on to say that she's excited about the one big rise in blood 11 days after a transfusion, but it could just be a one-off. But what would cause her neutrophils to go up and stay up, plus have 1 big rise in blood a month ago? The weather? LOL. I understand, though, why she wants another a big rise to really say for certain that everything is working 100%, but still...

My mother had her cyclosporine reduced to 200 mg a day, saying that it's not doing that much, other than anchoring the ATG. She said at 200 mg or lower, there shouldn't be too many side effects.

If my mother makes a full recovery, it won't be for a while because of her age. I already accept this fact. She already lost 6 weeks of her recovery time because she was on a very strong antibiotic which suppressed her bone marrow. We were warned by her hematologist about this.

I've read too many accounts of people in their 60's and 70's with aplastic anemia who went 1-2 years before getting off transfusions for good. With younger people, though, response time is to be much, much sooner. Like I said, even with older people, there still needs to be some improvement in one of the lines by a year or so (blood, platelets, or neutrophils). That's my understanding. If not, horse-atg has failed. Again, who knows? I repeat myself a lot because I just get very frustrated with everything, It's like no one really understands aplastic anemia very well. They understand blood cancer way better, even sickle cell anemia, or so it seems.

By the way, my mother's hematologist said she was never concerned about white blood morphology or red blood cell morphology in general. Aplastic anemics can have many abnormalities without concern in their CBC, except dysplastic cells like myeloblasts or Pelger-Huet anomaly, which can signify MDS. My mother, actually, had Pelger-Huet anomaly while on a strong antibiotic for six weeks. I got super scared, but it resolved itself after stopping the antibiotic. Dysplasia can be caused by medications, too, so just be warned. Aplastic anemics should not have dysplastic cells without reason, however; if they do, it can signify a transformation into hypocellular MDS, I think. Don't quote me on this, as I am far from sure.

This disease is tough to understand, tough to predict. Again, you just put your seatbelt on and close your eyes. LOL.

Take care and talk soon.

Last edited by Matthew42 : Wed Dec 8, 2021 at 12:32 PM.
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