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

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?

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.

@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!

@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

@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

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 😭

@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

Your experience is similar to my husband’s, though he has MDS 5q deletion, not MM. The 2.5 mg dose of Revlimid kept my husband’s Hgb around 10 for nearly two years. He developed stage 4 CKD and was taken off Revlimid seven months ago b/c the oncologist said Revlimid was negatively impacting kidney function. Since that time CKD has remained stable at eGFR 15 with Creatinine also near dialysis level. So… apparently Revlimid does decrease renal function for him, as his CKD is stable now that he’s off Revlimid.

His MDS is managed with weekly Retacrit injections at 60k units for red cell, and Neupogen/Filgrastim/Nyvestim for white cell. Hgb hovers around 11; but his WBC unfortunately ranges only from 2.6 to 2.8 even with weekly Filgrastim.

Your healthy diet, like his, along with drinking a lot of water may be your best defense. We think it makes a big difference. Low sodium, avoid potassium and phosphorus, and so much water my husband says we’re water-boarding him. But without that, he’d surely be on dialysis already. He sleeps at least 8 hours a night, and 3-5 hours daily. He’s fatigued all the time, most days he cannot walk more than 50 feet without sitting to rest.

We’ve been told that frequent and serious infections are most likely to be his worst problem. He’s had C-diff multiple times over the past couple years - it’s very difficult to get rid of, maybe impossible for him.

Your concerns are similar to my husband’s. Blood diseases are difficult at best.

@marco88 Lee, my kidney disease is separate from the Revlimid issue. I was tested and found out there is no connection. Rather, my end stage renal is from an ultra-rare condition. But, after starting Revlimid at 5mg in August 2021, we took a short break for four months because dialysis and Revlimid were causing [for me] a combination of fatigue and feeling poorly. That was April 2023-August 2023. Then I went to 2.5mg. In July this year I changed my dialysis fluids to maltose-based and have seen a great response overall between my multiple myeloma and dialysis. Better energy, look better, critical numbers like hematocrit/ hemoglobin/ M spike all show improvement.

My oncologist and nephrologist are in awesome communication with each other, and work together with me to have the best treatment plan possible. I do my part by being med compliant, following dialysis protocol [been on it since Sept 2022], eating well, offering whatever information I can to the whole team. We have to be active in our own advocacy.
Ginger

Thanks, Ginger, for responding.

Being med compliant, along with eating right and staying hydrated have been so good for my husband also. Interesting to know that Revlimid is not necessarily a catalyst for your kidney disease - my husband’s oncologist is so sure that’s what’s responsible for his.

When on dialysis you’re using maltose-based products. What does that mean? My husband has a fistula that’s matured so he’s ready when the time comes for dialysis, so I’m starting to collect information about how things will change. Nutrition drinks seem useful, but they’re loaded with protein and sodium - both not good for failing kidneys.

He may be back on Revlimid at 2.5 when he starts dialysis. I’m interested in the good response at this dose, when I’ve been told the “normal” dose is 10 mg. That seems like a lot.