[Joanne Roberts.]

It’s hard to define “remission” in a disease such as MDS. If your counts are improving or stable, that demonstrates the Vidaza is effective. I was diagnosed 20 months ago with high-risk MDS (RAEB-2), and have had a nice improvement in hemoglobin and platelets. My neutrophils bounce between 400 and 900. I am a retired palliative care physician, and our plan is to add venetoclax to the Vidaza when my hemoglobin starts to decline. Once that second drug shows evidence of failure, I’ll volunteer for clinical trials. All in all, I’m please with the course I have chosen. I’m 72 and in excellent health otherwise. I chose the Vidaza route over BMT because I wanted “good life over long life.” As another person mentioned, quality of life with BMT can be rugged, with long-term outcomes in older folks being not a lot better than Vidaza/venetoclax.

[Joanne Roberts.]

Hi Lena: My hematologist reflected that all of us would eventually get MDS if we lived long enough, since the bone marrow is the site of our most active cells, and all cells are prone to mutation as we move through our years of life. As Lisab said, each patient is unique. Some of us are blessed to tolerate drugs like azacytidine and have had nice responses in our cell counts. A friend of mine was diagnosed with HR-MDS 2.5 years ago, could not tolerate azacytidine, and yet lived very well until he died last month at 8o over about two weeks of decline. Good luck with your mom. Each day is precious.

[Joanne Roberts.]

I’m 71, a physician, and 12 months out from a diagnosis of HR-MDS. I’ve had a nice response to azacytidine, with Hgb running around 11.5; platelets 80-100K; and ANC 600-800. Plan is to add venetoclax when my counts start dropping. My goal is “good life” — be as vital as possible, even if it means a somewhat shorter lifespan. I had a consultation at a well-recognized bone-marrow-transplant center, and to my surprise, the transplant specialist recommended my current treatment plan, and not pursue transplant. He said a BMT would involve at least a year of poor functional status, with a high likelihood of recurrent hospitalizations, with a five-year survival of about 30%. Neither of us perceived such a trajectory to fit my values and goals of care. (There are numerous studies that show that physicians, when they are patients themselves, choose less aggressive care, as I am doing.)

[Joanne Roberts.]

These decisions are certainly difficult, and only your husband can make his decision. I am 71-year-old retired physician who is in excellent health other than my high-risk MDS diagnosed in September 2021 (and probably dates back at least a year earlier). All three cell lines were affected, and I’ve had a good response to azacytidine, now just finished cycle 12. My CBC is nearly normal, for now. I did see a BMT specialist at our COE (University of Minnesota), and he listened to my values and goals, which basically come down to “good life over long life.” He said a BMT probably is not ideal for me because the quality of life, even if successful, would involve many and long hospitalizations and a life of early frailty due to drugs and likely frequent infections. That said, those are my values at 71. If I were 59, I might have very different values. Good luck to you both. Follow your hearts.

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