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

Hi, and thank you. I will follow up on all your suggestions.

https://connect.mayoclinic.org/comment/1264132/
Jeffrey - I must have forgotten to press the reply button.

Jeffrey: it is important to trust your Dr. You also need to know where your Myeloblasts are at. Your Bone Marrow Biopsy should have revealed that level.
Familiarize yourself with your IPSS-M score. The tool is on MDS-foundation.org :https://mds-risk-model.com/ You will need your latest CBC results and you should also have the results from your BMB. You can now download the tool too. Also, download information on MDS from the foundation and read it: https://www.mds-foundation.org/resources/materials. The Building Blocks of Hope is helpful. You can also request the documentation be sent to you. Did you have symptoms of MDS before you reached the transfusion stage? Your Dr may feel the need to be more aggressive with your treatment. Myeloblasts and the fact you are transfusion dependent can play into his decisions.

I don't know anything about my myeloblasts. I'm being treated locally (S. Florida) and my Dr. has all the qualifications: Harvard Med, Brigham and Women's, and Dana Farber. So, I trust him. Any thoughts or suggestions?

@jeffreykassover1
Since your Dr agreed to another month on the med it must be a reasonable decision. Where are you receiving care? What level are your myeloblasts at?

I've been on lenalidomide for one month without any positive results. Just had my third transfusion, and the doctor suggested another medicine. Based on what I had dead with this group, my impression was that it could take a couple of months to kick in. I asked the Dr if I should continue with the lenalidomide for one more month and he was ok with it, not optimistic. Did I do the right thing by continuing with the drug or should I try something else?

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.

@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

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.

@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