What are your experiences with lenalidomide (Revlimid) for MDS?

Posted by nbadry @nbadry, Oct 19 3:39pm

My MDS del 5q has deteriorated over the last few months. I've had one transfusion (Hb was 74) and am about to have another. I'll qualify for subsidised lenalidomide when I've had 8 units of blood altogether. I'm wondering how much of an improvement I'm likely to see in haemoglobin counts on the drug. Feeling pretty lousy once it dips to the low 80s...Thanks in advance.

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Colleen Young, Connect Director | @colleenyoung | Oct 19 8:40pm

Hi @nbadry, I'm tagging fellow members like @jrsav @gingerw @tristram @coynelane @darlaburley @janetlen @5qdeletion @marco88, who can share more about their experiences with lenalidomide (Revlimid) for MDS or other blood conditions.

You might also be interested in this related discussion that @packgb19 started a little while back.
- Is anyone here taking Revlimid? If so please share with me
https://connect.mayoclinic.org/discussion/is-anyone-here-talking-revlimid-for-chemo-if-so-please-share-with-me/
@nbadry, can you tell me more about qualifying for subsidised access to treatment once you've reach 8 units of blood?

nbadry | @nbadry | Oct 19 10:01pm

In reply to @colleenyoung "Hi @nbadry, I'm tagging fellow members like @jrsav @gingerw @tristram @coynelane @darlaburley @janetlen @5qdeletion @marco88, who..." + (show)

Thank you.
In Australia our government Pharmaceutical Benefits Scheme will subsidise lenalidomide for someone with MDS del5q once they are transfusion dependent...having needed 8 units of blood within 6 months. I was just being monitored until a couple of months ago, when my haemoglobin dropped fairly quickly fom high 80s to low 70s. I had a red cell transfusion and felt good for a few months, but it's now dropping off again. I'll continue with transfusions until I'm eligible for lenalidomide. I'm just hoping the Hb will rise sufficiently on the drug to carry out daily activities, because it's hard at the moment. (My siblings are currently being checked as possible SCT donors for further down the track.) I'm keen to hear about the impact of lenalidomide on other people's Hb levels.

janetlen | @janetlen | Oct 20 9:17am

@nbadry
I live in the US. I was able to start Revlimid when my HB was around 9. The lowest my HB got was around 8.7 and I was feeling unwell, so I can imagine how you feel. I started Rev. In March at 10mg which was too much for me. So, the dose was lowered to 5mg. I am responding well with HB typically exceeding 14. I have escaped transfusions for now. Hope you get started on Revlimid soon!

nbadry | @nbadry | Oct 20 3:10pm

In reply to @janetlen "@nbadry I live in the US. I was able to start Revlimid when my HB was..." + (show)

@janetlen
Wow. That's a great response! I hope it works for a long time for you. The lower my Hb gets, the more I worry that Revlimid might not improve things enough to function...but that is encouraging to hear. I'm hanging on for the next transfusion at the moment. Thanks for responding.
Nicole

Ginger, Volunteer Mentor | @gingerw | Oct 21 4:49pm

@nbadry Nicole, I am taking Revlimid for multiple myeloma. I have been on it since August 2021. Due to a comorbidity of end-stage renal disease [not related to the myeloma] we decided to use a lower dose of 5mg. However, due to the side effects of everything, we lowered the dose to 2.5mg earlier this year. My Hb number remains fairly stable, but it really is a daily challenge dealing with multiple health concerns. Keeping a healthy diet and doing what you can do on any given day, without overdoing it, seems to be key takeaways for all this.
Ginger

nbadry | @nbadry | Oct 28 9:09pm

In reply to @gingerw "@nbadry Nicole, I am taking Revlimid for multiple myeloma. I have been on it since August..." + (show)

Ginger, thanks for responding. Unfortunately last week a CT scan incidentally found that I have an unrelated retroperitoneal sarcoma. Seeing the oncological surgeon in a week. I have no idea how this impacts my eligibility for Revlimid (and I'm seriously doubt I'll still eligible for an SCT down the track). I'm reeling 😭

Ginger, Volunteer Mentor | @gingerw | Oct 29 11:35am

In reply to @nbadry "Ginger, thanks for responding. Unfortunately last week a CT scan incidentally found that I have an..." + (show)

@nbadry Wow, what a blow to your campaign for Revlimid. I can offer you a shoulder to lean on, and an outlet for venting. I wouldn't be too quick to write off the chance at Revlimid, or a stem cell transplant. You don't know what's in the future.

I hope you will let me know what the surgeon says next week, and what you hematologist has to say.
Ginger

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