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