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← Return to imetelstat/Rytelo MDS treatment anyone?
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imetelstat/Rytelo MDS treatment anyone?
Blood Cancers & Disorders | Last Active: Sep 5 9:09am | Replies (14)Comment receiving replies
Six months have passed since we became aware of Rytelo as a possibility. As expected, my husband’s Procrit/Retacrit treatment has failed entirely. He is getting packed red blood cell transfusions - two units each time - which last only a week or so.
He is nearly bedridden after just six days ago receiving his most recent transfusion. His oncologist says there is no further treatment available. But I’ve read that Rytelo/Imetelstat and also Luspatercept/Reblozyl, both telomerase inhibitors, may be effective for MDS 5q deletion. We discussed this with a Mayo Hematology NP, and have an appointment with the Hematologist next week.
Apparently both drugs are off label for 5q, so we may be in for a disappointing discussion.
Moderators - do you have current information about these two drugs, or can you lead me to a discussion about them? Caregivers and patients- do you have recent experience with these?
Replies to "Six months have passed since we became aware of Rytelo as a possibility. As expected, my..."
@marco88 Oh gosh, I’m so sorry to hear your husband’s treatment isn’t working well anymore. But I am relieved to see that you have an appointment at Mayo. The specialists there are honey badgers when it comes to finding a solution to a complex issue.
I’m not familiar with the drugs that you mentioned but definitely discuss this with the doctor. It’s not unusual for them to use drugs off-label where warranted. I’ve had a couple of situations like that over the years myself.
Sending positive thoughts your way…please let me know what you find out.
Do you have your husband’s patient portal set up? It’s good to have that done ahead of time because it’s a lifeline between your husband’s doctor/team, appointment information, blood results, etc..
Is this Mayo Rochester?
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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.