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DiscussionMDS diagnosis with DDX41 Germline and Somatic
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (50)Comment receiving replies
Replies to "@loribmt I am currently dealing with Penn Medicine in Philadelphia. It is about a 2-hour drive..."
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@asarnesejr @asarnesejr I wanted to make sure you’ve seen the reply from @sherbs regarding their experience with the DDX41 mutation and having a SCT. . Here is their reply: https://connect.mayoclinic.org/comment/1476612/
Because you have time before requiring the SCT and it is a procedure to consider carefully, it’s not a bad idea to get a 2nd opinion in cases that aren’t cut and dried.
If you’re interested in a 2nd opinion from Mayo here is a link to get you started. http://mayocl.in/1mtmR63
This may not necessarily mean a trip to the clinic but the possibility a tele-conference with one of the specialists.
As for the procedure and recovery for the transplant it can vary per person. I was 65 at the time of my bone marrow transplant for acute myeloid leukemia. Age can be a consideration but at 61, if warranted you’re still considered young enough for a transplant. I personally know patients who were in their middle 70s, now into their 80s and still doing well, active and enjoying life. However, before doctors consider a transplant other factors come into play, including age, co-morbidities, whether the patient is healthy enough to withstand the rigors of the pre-conditioning and transplant itself and mental assessment. There is the requirement usually to stay within a 30 minute radius of the facility for around 100 days. So there’s a time commitment and the requirement for a dedicated caregiver. You can read a number of stories, including mine, here:
My bone marrow transplant story; Will you share yours
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Do you have any specific questions about the transplant? Do you have siblings or children that might qualify as a stem cell donor if needed?