Hello Kathie,
We are in a similar situation. My husband’s MDS (5q deletion) was diagnosed early 2018. Procrit kept hemoglobin at mid-10s for 67 weekly injections. Revlimid caused severe rash, stopped after ten days. Vidaza, 7 days on then 21 days off. since late 2019. Hemoglobin hovers in the low 12s. He his exhausted, winded, fatigued constantly. Never has energy at all.
The oncologist says Vidaza may keep him out of the hospital for several months or for “years”. Says he has no idea how long it can last… everyone is different he says. The oncologist has not mentioned a “vacation” from Vidaza, but we are wondering if that might be possible. Or if the 7 day/ 21 day schedule will keep him alive for several years. I don’t like the “everyone is different” answer, but he says that’s all he has, and that transfusions are the next step when Vidaza fails. He says it will fail at some point.
We’re hoping for luspatercept or…….what? We don’t really know what to think. I see the Centers of Excellence link above and will look at it. Much hope for your husband – MDS is a difficult disease.
