Marlene,
I appreciate your suggestions for ways to bring up these difficult discussions. The pushback he has given has made me and my mother apprehensive about asking questions to the hematologist. Prednisone seems to be very important to him, and though it is a somewhat small dose, my mother has been on it for four months straight and it seems to still be causing trouble, or at least making it worse.
Thank you for the link to Dr. Young's paper. It has been one of the most important I've referred to in the past months to see what the treatment guidelines are like.
This paper about supportive care has also been really useful:
https://www.nature.com/articles/bmt2...df?origin=ppub
And it even specifically says:
The risk of severe infections decreases rapidly with increasing neutrophil counts, and in patients with ANC > 0.5 10^9/L, antibacterial prophylaxis is not recommended.
Now to just figure out how to bring up something like this without sounding like I know better.
Her platelet transfusion threshold is 20. I honestly don't know what her platelet count would hold at if platelet transfusions were briefly stopped. The lowest I have seem them be at in the past 2 months is 9, 2 weeks after a transfusion. I can only hope that there are a few starting to hang in there as my mother was getting transfusions every 7 days average but I have noticed this increasing to 10-11 days average. Platelets don't really live very long and 10 days is about their lifespan. She has been lucky to have several HLA-matched donors available. (This is another reason I have been trying to give platelets when I can! I am so grateful to these people who continue to donate)
Matthew42,
No disagreement from me, everything I have read indicates that infection is the top mortality risk for AA patients. Looking back at past blood results her neutrophils recovered very quickly, within a few weeks after starting treatment they were over 0.5 and within another week or two were consistently 1+. I wish the hematologist was a little more excited about this
Not sure if he has ever even talked about this beyond when I brought it up at the last appointment.
The information about iron overload is appreciated. So far my mother's liver counts have been perfect and her heart is doing very well as far as I know - she had a transthoracic echo and several EKGs done while in the hospital during ATG as her heart rate was hovering around 50, but nothing of note was found. In the past months it seems to have recovered fine and pulse is back to normal 60s/70s. Before all of this AA stuff happened my mother was only taking the small dose of metoprolol for palpitations/PVCs, and has been for years.
Unfortunately I don't know exactly how many RBC transfusions my mother has had but I can't imagine it has been much more than 20. However her ferritin is still >3000 so I suppose I can understand the concern. The concern my mom has about taking Exjade is that it says it is contraindicated for people with platelets <50 and can actually cause blood cell lines to drop, among other unpleasant side effects. It seems to me it would make more sense to wait until her counts are a little more stable.
I hope your mom remains non-refractory to platelets. My mom was very quickly refractory which made keeping up her platelet counts was very difficult for several weeks before they found matches. They had even dropped to 0 at one point
Thank you both for your valuable time and information, as well as just hearing me and reflecting my concerns. We are at different stages in the journey but just hearing more about the ins and outs of response and progression are beyond valuable to me.
I hope you both have a good Thanksgiving, assuming you are Americans of course
