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 😭

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.