Thank you both for your replies. I was surprised to see responses so quickly
Matthew42,
Your thread about your mother is one I have been following in the past months. I am sorry that we are in the same boat together like this. It has definitely been a rough road and it's only just getting started I suppose. Hopefully your mother will continue to make improvements and see more stability in her numbers soon.
I believe my mother has only had a spike in Hgb without transfusion once (something like 8.6 to 9.5) but I have yet to see any spike in platelets, although she is needing them slightly less than she was. It sounds good that your mother is seeing more and more of them.
I have been combing through a lot of information and research on aplastic anemia and this is one of the only places online that I found which talks about what the recovery process is actually like, how blood results change and fluctuate and what kinds of things to look for. It's good to know that your mother's doctor thinks the ANC count staying up is a very good sign that there is response happening. My mother's hematologist did at least agree that the white cells have responded very well but it's still not what he wants to see, which is I assume transfusion independence.
As it has only been 4 months for my mother I agree that she needs more time to respond. Her hematologist makes me feel like the clock is ticking to respond better by 6 months. The time to meet with him seems very limited and I can understand why as the whole blood cancer center is incredibly busy (how sad to think of that). I agree he is not necessarily an expert on AA but so far has done everything correctly, including getting her into the hospital to prepare for ATG the same day he made the final diagnosis. The part I am questioning now is why the lack of patience with a disease that seems to require almost nothing BUT patience.
My mother has iron overload too and despite still having unstable blood counts, the hematologist wants to start Exjade immediately. My mother is really worried about this seeing as there are warnings about it dropping blood counts, among other side effects.
I appreciate your response and I wish the best for your mother as well, I hope to see more updates from you with good news.
Ruth Cuadra,
I cannot understate how valuable this forum has been to learn about aplastic anemia as well as hear much more detailed stories about what recovery and response mean. I already feel like the current internet does not have nearly enough information, I can't imagine how little there was in 1996!
It makes me feel a little better to hear that her ANC response seems to be a good thing and gives me a little hope. Both Hgb and platelets definitely need more time to respond.
I have been trying to find other clinicians in the area that state specific expertise in aplastic anemia but it's been a real challenge. There is a large medical school with a large heme/onc division including programs for rare blood disorders as well as benign hematology but none of them list aplastic anemia as an expertise
except the children's hospital. Wondering if it would be worth trying to contact some of the programs anyway. I would love to have more guidance and a better understanding.
Cyclosporine is a beast of a drug but at least we know it's doing it's job. I just wish there was something that could help my mom's tremors? Of course she doesn't want to lower the dose because it has a job to do. I think my mother has been very patient with this disease but both her and I are feeling very stressed over the hematologist's disappointment with the response so far.
Again I am very thankful for both of your responses and it helps so much. Part of the reason I am so rabid for information is that my father had leukemia but I was much younger and never understood why they did the things they did to him, or why they
didn't do other things, etc.
Sorry for writing a novel!
Best of wishes to you both.