Quote:
Originally Posted by Hopeful
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! |
Thank you, Hopeful, for your kind response. I really do appreciate it.
Well, there has been a bit of an update since I last posted, as my mother saw her hematologist a few days ago. The doctor said that she is indeed responding to IST treatment as there was some improvement in bone marrow cellularity. Her neutrophils before ATG were around 400, but now average around 700. She said that neutrophils will rise way before hemoglobin and platelets. She went 14 days without a blood transfusion in July (normally she transfuses every 9 days or so). Sometimes there can be a sudden drop in levels for a week or two at times in the journey, but there should be an "upward trend" overall, even if levels drop suddenly at times.
All that said, her doctor said that there is real improvement from IST therapy, but she won't deem the treatment successful as her hemoglobin and platelets have not shown strong enough improvement. They are going to wait another two months before considering doing the rabbit. She said if the horse-ATG fails to bring her levels up in the coming months so she can get off blood transfusions, the rabbit-ATG should get her over the hump. They would give her even longer than two months, but her age is a concern (almost 70). All that said, a slow recovery can be a good thing, too, just like a too fast of recovery may not be a good thing. It's hard to say. She confirmed during this appointment that there are many patients who don't get off transfusions or show improvements until 6 months, sometimes even 9+. There are cases where it took almost 1-2 years for horse-ATG to work, but she said it's not safe to let my mother go down that road. She said there may be advantages to a slower recovery, but the risks are too high for older people to wait around. She insisted on my mother's age, over and over again. But, even if the horse-ATG ends up working, my mother will have had a slower recovery for sure.
She now has iron overload, but the doctor said that because she is in otherwise good health, not to get too excited over it. Lots of people have it and most get their levels down to below 1000 (which is acceptable). If she had a heart problem, it would be much more serious. It's also not been festering in her body for a long time, so that it is a good thing.
Also, getting off RBC transfusions is more important than platelets. Sometimes, platelets are last to come up, but not always.
She also said that you never know what aplastic anemia is going to do. For many people, they will just have ATG once or twice, and then go on to have no relapse or only minor relapses over a period of decades. Some will have major relapses over time and will have to have ATG several times; and some will have to stay on cyclosporine long-term. And a small portion of patients will never respond to IST and will require a BMT (these cases are less autoimmune, I believe). Once in a while, she said people have spontaneous remission without treatment, and the disease never comes back. She said it's a bizarre disease. You just never know!
The biggest positives for my mother were: higher neutrophils averaging over 500 for the past 6 weeks + a bit higher cellularity in bone marrow. She is positive about IST working, but can't guarantee the horse-ATG will do the trick in the next two months. She cannot wait, she said, because of her age. She also said that second ATG is no riskier than the first. Having 2 ATG's is no big deal. I am just saying what she said.
I forgot to mention that my mother's reticulocyte is now in the normal range. This is also evidence that she her bone marrow is now working much better. Just waiting for the hemoglobin and platelets to come up.
I am wishing you great health and happiness as well. Thanks again, Hopeful!