Hi Jeff. Having a bone marrow transplant is certainly a life changing event…quite literally! It allows those of us with an uncertain prognosis to have a 2nd chance at life. As you can imagine, that doesn’t come without some risks. But it also comes with an incredible potential reward of a healthy future that wouldn’t exist without the transplant. For me, my BMT gifted me and my family/friends with 5+ years of our lives still together! Without the transplant, I’d be someone remembered at holidays with the empty chair at the table.
There are always risk/reward scenarios. I agree, this is a biggie. But you have AML, a form of leukemia which can create challenges for curing, or even remaining in remission as you’ve already discovered. The BMT is your opportunity to have a life going forward. Period. It is the only potential cure at this time to treat AML and has a very positive rate for success with newer protocols for helping to reduce the events of GVHD.
GVHD is a possibility with any BMT or SCT when we’re using donor cells. The key HLA proteins are matched up as best as possible between donor and recipient. Usually aiming for a 10 out of 10 or 12 out of 12 match. Even then, there can be some issues with the new immune system, ie implanted cells, not recognizing the strange proteins in the body it’s set up housekeeping.
So the new immune system will do what it’s intended by trying to take out the offending invaders, which can be a problem because the host body in which it’s now living. The newly implanted cells can be overly aggressive in the beginning, rushing to any site of inflammation. To combat that in the early months of transplant, you’ll be given anti-rejection (anti-inflammatory) meds to hold back the overzealous immune system response. In time, both parties…stem cells and body, learn to play well together. That’s the goal.
I was told by my BMT team that there most likely will be some gvhd. They didn’t know what part of my body would be impacted or when it would happen, but my doctor/team would handle it. And they did!
We need that graft vs tumor response to wipe out any remaining cancer cells.
Some mutations in AML trick our immune system to no longer recognize the defective cells as cancerous. This allows for some of the cancer cells to go dormant or hide out during chemotherapy only to reemerge some months later. The hope is that with a new immune system, if there are any cancerous cells resurfacing after months of hibernation, the newly implanted stem cells from the donor will now be able to recognize these cells as cancerous and snuff them out. It looks a lot like Pac-Man..chomp chomp, consuming the cancer cell.
@katgob gave you excellent advice and I also wrote a lengthy response in this post of yours from the other day. https://connect.mayoclinic.org/discussion/stem-cell-transplant-decision-success/
Take time to read through the replies. I think you’ll find a lot of useful information. Especially in the link Kat and I provided for an existing discussion I started several years ago. https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
It’s a cohesive discussion where many of our transplant members come together to share. This would be a great place for you to join in the discussion so we can keep the link going with current BMT experiences.
Are you set for lodging & caregiver? Will you be an inpatient for the transplant?
Thank you, @loribmt
Fortunately I live within 35-40 minutes of Barnes Hospital here in the St. Louis area. I am very lucky in that regard. I am also fortunate to have my wife, one of my sisters, and two of my 4 daughters local and willing to help whenever necessary and needed.
One of my daughters is my donor. She is a half-match, whatever that means. It was originally going to be my brother who was a full match but a health issue prevented him from donating.
I really appreciate you and others taking the time to respond. I have read through some of the experiences of other members from the links you shared last week. Honestly this is the first time in my life that I have feared anything. I have ran 50k races and, hopefully will run some ultramarathons again, competed in many other athletic endeavors and have never felt fear or intimidation. But this transplant is a huge cliff and it has hit my fear of heights, so to speak.
Thank you again for the guidance.