Declining bone marrow transplant, Now what?

[Martha Redpath]

Hi all,
My 70yo husband was diagnosed 2/24 with high risk MDS based on bone marrow biopsy, molecular markers, hx of previous chemo. (Wasn’t long covid after all!)
After comfirming with experts/consults and doing lots of soul searching he declines the course of bone marrow transplant.
Are there others out there following a similar direction?
He is biking/golfing/enjoying life with his 1.7 year life expectancy (lots of napping). He is being seen by a wonderful oncologist every couple of months for lab work to keep an eye on the “pulse” of progression.
I imagine we are not inventing the wheel here and looking to connect with others along this journey.

[Traci Coble]

Martha, we have a very similar story.Husband, 73 diagnosed with high risk MDS, on the ‘doorstep’ of AML. Started out as CLL, chemo wiped it out but gave him MDS. He’s living his best life, (working, biking, traveling) but in steep decline, almost all labs are ‘critical’, starting treatment (Vidaza) next week to try and stabilize his condition. Doctor is great, wants husband to meet with transplant team which we’re doing but he is pretty much a ‘no’ on pulling the BMT trigger if he becomes eligible. We knew this day would come but still surreal that he has only 8-13 months left if we’re lucky.

Everyone’s journey is different, I have to keep telling new people on his treatment team that we’re not in denial and understand how serious this situation is. We are just making the informed decision to enjoy a ‘normal’ life as long as possible.

[Heinz]

Hi Martha and Traci,
I can understand your husbands’ decisions against a bone marrow transplant. I was faced with the same decision four years ago when my MDS-EB2 turned into secondary AML and I opted for Vidaza therapy.
I would be interested to know how you arrived at your exact values for the expected lifespan. Perhaps you could report on this in more detail?

[Traci Coble]

4 years post-AML diagnosis is amazing! My husband’s lifespan expectation relayed by his Hematologists (x2), was in part based on the composition of his most recent BMB results and the incredibly rapid rate of decline in the last six months. Decitabine + Venetoclax is the best option right now, anything more aggressive would be too high risk for his kidneys/liver. We’re in Los Angeles, the care here is impressive, there are patients as old as 91 currently going through BMT procedure. Having said that, it doesn’t mean that BMT is something every patient would choose to do. In our case, it came down to quality of life vs. life expectancy. My husband is choosing quality of life.

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