Hello friends. I am a 53-year-old single mom to a teenage daughter. I was diagnosed on March 20 of 2024. I have high-risk myeloma, with four chromosomal anomalies. Currently on daratumamab, bortezomib, dexamethosone, lenalidomide. I had a spine surgery in April to stabilize the area where the myeloma ate my T1 vertebra. Planning a stem cell transplant for the end of October this year. I have no comorbidities. Every now and again, I look at my test results, genetics, etc. and search PubMed (I work at a med school). The words I see are not good. "Aggressive," "poor outcomes," "mortality." Not sure what I'm asking here. Maybe for hope? Does anyone here have a similar genetic profile?

Hi I am new to the group. I was diagnosed with smoldering myeloma in June 2024. I’m IgG lambda. Low Risk. Anyone the same?

hello, I'm Trey glad to check out this group I've had been given access 3 years ago but now I'm ready to have a chat. Has anyone used rubber bands to strengthen themselves after they transplant any tips would be greatly appreciated thanks ciao for now.

Pfizer is interested in finding patients who have been on Elrexfio (elranatamab) who would like to share their story as a patient ambassador. If you are interested, please email support@healthtree.org with your Name and Email. Have a great weekend ahead!

Anyone else using Sarclisa?

My DIL had a bone marrow biopsy 8 months after a SCT and 5 months after maintenance therapy with Darzelex monthly and Revlimid 21/7. The flow cytometry showed an 0.011% of abnormal cells out of 1million. The oncologist told her she is MRD positive but the research I read from the NIH states any result 0.020% or lower is considered MRD negative. Does anyone have different information from their oncologist regarding these results? Thanks

Welcome!

I'm new to group. Is there a starting p lace?

Hi all! I hope everyone is doing well. Is anyone else dizzy? Any idea what is causing it? I was diagnosed with MM last summer at 37 yrs old and started 16 weeks of RVD in August. I had an auto SCT December of 2023 and have been in remission since. I’m on monthly infusions as maintenance (velcade, faspro and solumedrol) along with a folbic acid supplement. It’s not traditional dizziness like the room is spinning but it almost seems neurological. The ‘dizziness’ is at its worst when walking down aisles at stores. It seems to be lessened when I have an electrolyte packet and the folbic acid, but it doesn’t go away completely. It does not seem like a change in vision.