Hello Carl. We got good news about Revlimid; perhaps this can help you if Revlimid is considered again.
My husband has MDS 5q. Procrit failed. Then he had a severe rash reaction to Revlimid at the 10 mg dose. Two years later after Vidaza failed he was prescribed very low dose 2.5 mg Revlimid which caused a slight rash- much less severe than at 10 mg. The oncologist started him on a “cocktail” to combat the rash – and it works: 2 Pepcid tablets, one regular Claritin tablet, and one L-Lysine 500 tablet. The 2.5 mg Revlimid raised his hemoglobin to 10.2 but it took over 8 weeks with a transfusion of 2 units PRBC at week two, and another 2 units at week four.
It’s now been six weeks since his last transfusion and his Hgb is at 10.2, up from 9.9 last week. That’s without a transfusion. Revlimid is working! The dose is only 2.5 mg, a level that the oncologist thought would not work, but would be useful to titer up to a higher dose. We have yet to learn whether the oncologist will recommend staying at low dose or increase it for more hemoglobin performance.
He has to continue the “cocktail” of over-the-counter Pepcid/Claritin/L-Lysine but there’s nothing in that “cocktail” to count as a negative.
You might ask your provider about this if your Hgb drops again.