imetelstat/Rytelo MDS treatment anyone?

Also looking for Rytelo information. It’s so new we may not get much for experience on this.

My husband with MDS 5q deletion for seven years has been treated with Procrit/Retacrit, Vidaza (azacitidine), and Revlimid; all failed after months/years. He is now only partially sustained with Procrit/Retacrit and we’re hoping Rytelo may prove useful.

His hematologist so far says “maybe”. I wish you well in your quest for treatment, and hope you will share what you learn and your experience with Rytelo. Thanks!

My husband’s hematologist also said “maybe.” I wish you & your husband all the best & I will share what I learn…his 1st treatment is 1/4/25.

Thanks for responding!

Best wishes for Rytelo to work- blood cancer is a capricious disease, never knowing what will come next. Hoping 2025 is a good year!

I wanted to give you an update…my husband had the 1st treatment 2 weeks ago. So far, very minimal side effects. Also, his hemoglobin has been steady & no blood transfusions. Best wishes to you & yours!

Good to know about side effects, thanks.

Can you tell me his Hgb number before and after the treatment? My husband is nearing the end of efficacy with his weekly Retacrit injections. Each protocol has lasted about 24 months before failing, and he's at week 73 on Retacrit.

We believe Rytelo may be his last possible chance. It's nice to know this is working for your husband - wishing you the best outcome!

Thank you for responding.

Like you & your husband, we are very grateful there is this option. He did have 1 bad day post treatment where his shortness of breath was extreme. Otherwise, very mild symptoms. His hgb day before treatment was 8.2. 3 days post treatment 8.5. on the day breathing was difficult 7.8. Now he has tested twice at 8.2. No transfusions! So far, we are very hopeful. Best to you & your husband. The next infusion treatment is 2/5…I will post an update after that treatment.

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?

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.

@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?

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!