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Aplastic Anemia and vaccine influences

Blood Cancers & Disorders | Last Active: Apr 24, 2023 | Replies (24)
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@aeft

Thanks for reply. Yes I’m considering the Novavax. However my doctors don’t seem to share my vaccine concern. Transplant doctors do not have experience with the Rag1 mutation since it so rare.
There is also the question Of whether I still have the mutation post transplant. My recent Chimerism is 98%. I cannot see the hospital genetics doctor until November 2023. I am searching the literature for any reference to heterozygous Rag 1 mutation and stem cell transplant or vaccines and have found nothing yet. Any suggestions?

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Replies to "Thanks for reply. Yes I’m considering the Novavax. However my doctors don’t seem to share my..."
Lori, Volunteer Mentor | @loribmt | Feb 7, 2023

I really don’t have any suggestions except the possibility of having another genetic test run to see if you still carry the Rag1 mutation. From my understanding, when we get an allogenic stem cell transplant, the goal is to give us a fresh start with a new immune system.
With my AML, I had 3 mutations which are no longer visible and haven’t returned after 3.5 years. Or, if they have, my new immune system has wiped them out before they got a foothold.
However, my chimerism is at 100%. With yours being 98% I’m not sure how much of a threat that 2 % is with containing the Rag 1 mutation.
Covid is so new yet that I’m guessing there isn’t much information out there for you to find, especially with your rare mutation. The data for us is also limited on how we will even respond to our routine vaccinations.
You’re still fairly new in your transplant so your immunity isn’t as strong as it will be ‘when you’re an adult’ in about 18 to 24 months. But even then, from my understanding, the new immune systems will never be as robust as our original.

Maybe your doctors aren’t as concerned because they feel you no longer have that mutated gene… If I run across any information I’ll let you know! Keep me posted on what you decide to do, ok?

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