Following up on this after my meeting with my team at Mayo Rochester.

For anyone with DDX41, I can highly recommend getting an opinion from Mayo. There really isn't a better group out there that has familiarity with this relatively rare mutation. I learned that there are many sub-types of DDX41 mutations - some more serious than others. It is important to know what sub-type you have as it may indicate different course of action and/or different treatments.

There are no guarantees, of course, and this could still develop into AML requiring more aggressive treatment and even SCT at some point down the road.

However, Mayo did disagree with the approach taken by Northwestern Medicine and indicated that early transplant is probably not the best course of action. This approach agrees with all of the research I've done on DDX41. I'm not sure why Northwestern wanted to take such an aggressive approach to treatment - when I confronted them on their approach and provided links to the papers I've found, they certainly didn't sell me on why early SCT would be a good idea. They just kind of dismissed the literature as not being significant due to the small numbers of patients studied. There may be some truth to that concept but, for me, making decisions based on the best information available makes sense over ignoring it without good cause.

I'd advise anyone working with Northwestern Medicine to seek additional opinions - no matter your mutation(s).