Quote:
Originally Posted by Marlene
Hi Matthew,
This publication may be helpful to you. It is from 2012 but much is still relevant. I too agree that it's a bit early to consider another round at three months since there has been a response. Your mom's case is a little complicated due prior issues.
https://ashpublications.org/blood/ar...plastic-anemia
You may want to look at the drug Eltrombopag. It's fairly new and I don't know enough about it to comment on its use/success.
It's also a good idea to get copies of the labs and chart them to look for trends vs just individual abc's. Also include, if you have them, blood work results that preceded the onset of all of this.
I assume they ruled out all nutritional issues and GI problems like ulcers/bleeding from being on Naproxan.
If your family is not comfortable with the treatment recommendation, I would definitely seek another opinion from someone who has experience treating SAA. You may want to consider contacting NIH/ Dr. Neal Yound.
I think you should start a new thread under the aplastic anemia section and ask your questions there. It's more specific to your situation and you may get more responses. |
Hi Marlene,
That was so nice of you to respond. Again, as I said to Neil above, I am really grateful for comments. I'm all new to this. Never knew about such a disease, but who would, knowing how rare it is?
Her hematologist still tells her that she has 90% chance that either horse or rabbit AGT will work. A month ago, she said was so happy that her neutrophils were in the 600-800 range from 300-500 before (Her neutrophils were averaging 400-500 before treatment, which meant that she didn't have VSAA, which I never even knew of). Now, this past Thursday, the hematologist had less enthusiasm, saying that her levels aren't coming up like they should be by 12 weeks. My dad said that my mother's levels are dropping more slowly, and she responded, "Well, I'll have to give you that."
She had extensive genetic testing done months ago, but was told that the acting hematologist has all the info now. There wasn't anything that showed a genetic cause for the aplastic anemia. It appears to be acquired from medication + Covid-19, but no one will say 100%, but likely. She cannot touch Naproxen, or any benzodiazepine. ever again, as they are likely to trigger a relapse. She always has to take special measures to prevent getting any future viruses like stomach flus, etc. So, it's very unlikely she has idiopathic SAA.
Here is what the doctors think: She developed MAA from medication, and then Covid-19 turned it severe. Doctors said that they know for certain that abusing Naproxen or taking benzos can cause benign bone marrow failure.
By the way, she's been on Promacta for 12 weeks. Her doctor insisted on it.
For the past two-three days, she has felt much stronger than she has for months.
No matter what, she says she's waiting it out for 12 more weeks, particularly if her transfusions become less and less over time.
Some researcher online I read said that it can take 2-3 years for AGT to fully repair the bone marrow levels from AA??? Wouldn't it be theoretically possible for someone to be transfusion-dependent for one year or two and still recover?
Finally, her doctor also said that 65% of her patients make full recoveries from ATG +cyclosporine + Promacta, with only minor relapses for some. 30% will have major relapses (1 or 2) but will go on to long-term remission, or they will have a series of short-term remissions that will require long-term use of cyclosporine. 10-15% or so will have to to have a bone marrow transplant, but she usually knows who those patients will be before starting ATG + cyclosporine treatment based on genetic testing, etc. So, my mother, she said, has a 10% that she will need a bone marrow transplant, and still says that it is very unlikely.
My mother just doesn't want to go through a second round of AGT, even though she went through it really well the first time. She's worried it will cause more harm to her aging body. She doesn't think the doctor is considering her age, either, in her responding more slowly to treatment. She's not 20 or 40 years-old.
By the way, she never had internal bleeding from abusing naproxen. Her primary care physician and arthritis doctor told her to take 900 mg a day of naproxen years ago. Her hematologists and emergency doctors couldn't believe that she was told to take that much naproxen. They were concerned that this triggered moderate aplastic anemia.
Wishing you and your husband great health,
Matthew