[Charles Rosen]

Diagnosed in 2017-2018 through bone marrow tests, I was complaining of tiredness and low energy. I have been in some form of treatment ever since. Aranesp, to increase efficiency of bone marrow failed, after taking shots for months. Occasionally when my Hgb went low (8 or under), I received a unit of blood. Waited for a year for Luspatercept, hoping it would be a “miracle” drug, got it, used it for months, and I’m part of the great majority of recipients who did not have a positive outcome — it’s a “miracle” for the 38% of recipients for who it is effective. I am currently in a blind research study which is reviewing the effectiveness of Vadaxa, which I am definitely getting, and the blind drug Magrolimab. I’m either getting the combo or the Vadaxa and saline. I have great doctors, the medical care at this MDS-Center of Excellence is great. The uncertainty, the constant poking, the weekly bloods and occasional platelet infusions and days and hours in the hospital aren’t “fun,” but I see no alternative. This is an insidious disease and effects each of us somewhat differently. I am able to live with the tiredness and low Hgb and feel a useful part of my family and community and the efforts to enhance my health care status. This is one story, there are a zillion others, take confidence that you’re not alone and that really smart people are trying to figure this out with you.

[Charles Rosen]

I’m almost ten years older than he is and have been diagnosed for three years. I now get blood transfusions (2 units) every two weeks. Unlike your husband I “failed” the EPO shots and also had no luck with Luspatercept. I am entering a trial soon of Azacitidine with Magrolimab (if I’m lucky, if not, then Azacitidine with placebo). Yes I have lots of joint pain. I get light-headed, not as you describe with driving, thankfully, but headaches or mostly dizzy. I also sleep alot, alot; it’s like I’m a teenage boy again. The shortness of breath is absolutely an MDS side effect. Not sure what to suggest but concerned you’re not getting all the right information, is the oncologist at an MDS Center of Excellence? If not, that’s the first place I might look were I you. Good luck.

[Charles Rosen]

That’s great for you, a wonderful experience. However, Luspatercept in clinical trials was only successful in 38% of those who took it, 62% did not have positive results, or results warranting continuing the treatment. In my own case I was given the drug when it came off clinical trials, Medicare thankfully paid for it. While I had some limited success early on, after 10 cycles I was not doing any better — had to have 2 units every three weeks — and the side effects from the medication were difficult. It made me even more tired than I usually am from the MDS, joint pain was increased dramatically, etc. I am now off the treatment, “cleansing” my body and deciding with my doctor what’s next. From my experience, if it works, and it takes some time to find out if that’s the case, than it’s a great drug. But, unfortunately, the overwhelming number of MDS patients with Ringed Sideroblasts (RARS) do not necessarily benefit. This sharing of info is really important.

[Charles Rosen]

Medicare paid for all of my Luspatercept injections.

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