Hello! I am posting here for the 1st time.
Totally agree with @meg1685 . I am also a high risk MM patient. I was diagnosed in Nov 2024 and received 2 cycles of Dara-Revelimid-Velcade-Dex when I had the DRESS ( drug related eosinophilia and systemic symptoms) It started as a skin rash on my back and abdomen and progressed to my face /arms / legs with a lot of facial swelling and hypotension. I ended up in the ICU but luckily recovered quickly. This was presumed to be due to Rev . I then received Dara-velcade -Dex for 2 more cycles. Pet scan was neg after that and also I was MRD neg.
I went to Mayo Clinic in Jacksonville,Florida ( I live in St. Augustine) for my ASCT in March 2025. Initially did well , then did have quite a bit of diarrhea, minimal mouth sores( ice chips really help) a lot of fatigue. Now I am past Day 100 and repeat tests are still negative ! I am slowly getting stronger ; have some neuropathy in feet and chest wall.
My oncologist is hesitant to give me Rev again for maintenance as there is a chance of my getting DRESS again. He wants to give only Dara each month. My ASCT DR recommends trying Rev 10 mg and monitor for any signs of rash , etc. Because of the high risk he wants me on 2 drugs.
Has anyone else had a similar experience and what maintenance therapy did they get? Would be interested in finding out and getting some advice .
Thank you for this platform!