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abdweidner avatar

imetelstat/Rytelo MDS treatment anyone?

Blood Cancers & Disorders | Last Active: Sep 5 9:09am | Replies (14)

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Profile picture for abdweidner @abdweidner

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.

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Replies to "My husband is still getting the Rytelo infusions. However, he has only had 4 in 8..."

You're hanging in there.... I didn't know transfusions along with Rytelo would be necessary. Side effects with platelets and white count are very hard to handle - pneumonia is so easy to contract! I understand about "something happens every six weeks" - we live from week to week here, not knowing what the next crisis will be. And hospitalizations have become a fact of life.

I hope you're having some good days too - caregiving is not easy but it is nice to know we can keep our loved ones content, even though it's right at home. Hoping you are able to take care of YOU! And thanks for responding.