Transplant question

[Tracy Jakusz]

Hi there!
I am relatively new to MDS (diagnosed in Oct 2019) and have only been treated with bi-monthly Aranesp injections which I am responding well to (HGB consistently in the 10s). I have 6% blasts and the dreaded RUNX1 mutation and apparently ETNK1 and NRAS (no idea what those are). I recently went to Mayo, since my only BMB was almost 2 years ago and not at a CFE. Nothing has progressed and I am considered low risk. I am 59 and still working full time and work out 6 days a week. I was shocked when they called to schedule me to come back in to Mayo to meet with a transplant MD. I asked the hematologist why, since I am responding to treatments and have had not needed any blood transfusions or chemo. She told me it was the only cure. I know how dangerous transplants are and know I would need to go on disability and stop working. I am confused since I am only 59 and still not needing aggressive treatments. Any one else have this experience? Thoughts? Would appreciate any and all feedback! Thanks in advance!

[Kathie Wolf]

My husband is 74 and was diagnosed in 2017. We did the watch and wait, then in oct 2018 started Procrit injections, he responded so well they stopped it as his Hgb got too high. When they restarted he developed a peripheral blood clot, so in August 2018 they started Vidaza. He responded well quickly, but we were also given a referral to our local CE, Stanford, to discuss Bone Marrow transplant. It was more so that we knew what they option looked like and what the donor pool looked like at that time(15 potential donor matches). The risks and benefits were discussed. My husband is an avid hiker, backpacker, hunter with no health issues. The information was good to have as well as the connection. The transplant team did not recommend a transplant at that time. He has since gone into remission after a year of Vidaza and is currently not on anything and having labs drawn every two month. I suspect your referral is informational too. Good to know all the options on this roller coaster disease.

[Dr. Lin]

This is correct. Most of time, MDS is a progressive disease that requires treatment as time goes by which includes transplant, especially when the disease is evolving (i.e. getting bad with accumulation of more mutations you mentioned). The risk will be transformation into acute myeloid leukemia. However, at this stage, it is mostly informational to know what transplant is and what the donor option look like. It is preparatory work.

[Sue]

When I was diagnosed, I was originally watch and wait. My blasts were at 3%.
Within a year my blasts jumped to 11% and I was suddenly high risk.
They started Vidaza and Venclexta for 6 months to get my blasts down then I had a transplant.
I was 63 at the time of transplant. That was one year ago this month.

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