imetelstat/Rytelo MDS treatment anyone?

Thanks Lori for responding.
He's a frequent flier at Mayo Jax, Hematology since 2018 and other specialties, using the portal with literally hundreds of messages and attachments for several years now and doing video appointments when possible. The Heme team is fabulous.

This is another impasse, a crisis of sorts. Transfusions for him last only a week or two, not the months we had hoped for. Iron overload will be the next problem unless Mayo is willing to try Imetelstat or Luspatercept. My understanding is that these are telomerase inhibitors, attacking the problem by diminishing the "bad" red cells, in a different manner than erythropoiesis stimulating "good" red cells. But what I read is that both were developed for non-5q deletion MDS. His local oncologist says call Hospice; however, some months ago in a conversation with a hematology NP, Imetelstat was mentioned as a possibility. We have yet to see how that goes... having to wait for the Mayo appointment, not able to get in as an urgent request.

So here we are. I'm not finding much information here on the sharing site with other MDS patients and caregivers. Each case is so very different! I'll keep watching and trying to learn more. Thanks for your response, I so much appreciate your time and effort mentoring those of us who continue searching!

My husband is still getting the Rytelo infusions. However, he has only had 4 in 8 months as it drives his platelet & wbc counts down too low. Is it working? The docs don’t know because he is still getting transfusions every 2-3 weeks, one unit per transfusion. He tolerates it well, but unfortunately, since the schedule is not regular, I’m unsure as to the benefits. Since his wbc is so low, he has had double pneumonia & other infections that have required hospitalization. Something happens every 6 weeks. I hope your husband’s docs at least give it a try. Any option is still a possibility. Wishing I had more info for you both.