I was diagnosed withMM in January, 2024. Followed by 12 weeks of induction therapy and then ASCT in June. Took Revlimed as maintenance therapy until June, 2026 when I became neutropenic. Restaging at 24 mos showed healthy bones, no kidney issues and full remission. I am very active. Transitioned to Darzalex Faspro and remain on weekly injections for 4 more weeks, then a month biweekly, then monthly. Question I have is that I seem to be more sensitive to heat while exercising and my heart rate is more elevated than previously. I sometimes have a headache during the week. This is new since starting Darzalex.

What is elevated factor 8 level?

I can never find our meeting on the website

I am enrolled in the Sim0500 trial which is a Trispecific targeting GPRC5D–BCMA–CD3 . It has been giving unbelievable results. My myeloma numbers were normal within 8 days of getting my first injection . It has not been without trials. The skin side effects as well as the taste changes are typical of GPRC5D agents. To me this is a miracle as my myeloma was very aggressive after relapsing in 9 months after my Car-T. I move on now to my six months of treatment. The side effects have lessened but are still there but tolerable. My labs are still good. My PET scan has shown a dramatic decrease in the myeloma lesions but they are still there. I will get my bone marrow biopsy next month. I am hopeful.

Has anyone relapsed while on TALVEY, and if so, what treatment did you decide upon next? Did you add a med to TALVEY and continued on it or changed treatment altogether? Thank you for your feedback. I'm trying to decide what to do next.

09.18.2026 I have been going through a terrible divorce this whole last year and moved across the street to my friends that had invited me to stay. There has been only one good thing that this divorce has produced, being able to help my friend that was diagnosed with multiple myeloma April 2026, six months after I had moved in. Both of us are retired so I'm able to be here for him 24/7, to support him 100% to battle this and as a caretaker if need be. His name is Garry 72 years of age and has 14 weekly treatments now and finished his first 21 days on and 7 days off Revlimid. Starting back on the 28 day cycle of Revlimid he had a hard time with it all the first week and ended up taking him to ED because of shallow breathing, shortness of breath and chest pains. This never happened the first cycle with the Revlimid. Blood clots was our first concern as well as the oncology team. Blood work, EKG, urine, chest x-ray all looked good and was released. The doctor had Garry stop taking Revlimid for now. He has been off it for four days now and feeling better. Will see soon what they want to do, smaller dose I suppose. So with that being said, has anyone else had problems with Revlimid and what was done about it. About Garry, he had made an appointment for indigestion problems GERD and blood test came up abnormal. More tests were done and that's when he found out of his cancer. Fortunately, it is said it was caught early, head to toe PET scan showed no hot spots outside of the marrow and no bone lesions, 40/50% of his marrow is infected. His four-drug regime is Daratumumab/Darza Fasprolax, Bortezomib/Velcade, Dexamethasone and Lenalidomide/Revlimid. Two weeks ago they did cut back from 1.5 to 1.0 of Velcade due to the numbness in his legs/feet. l

I was recently informed that because none of the recent tests done on my have found cancer cells that I am no longer required to come in to the hospital on a monthly basis for blood testing. From now on this would be done every three months. Is this normal for those on remission?

Just wondering if anyone has switched from Revlimid to venetoclax, specifically those with myeloma and a translocation 11;14? Any problems with insurance and also has anyone made this switch while under care at MSK? I’ve completed 9 cycles of Dara KRD and my Kappa has come down from 103 to 7 and my IgG has gone from 4308 to 1411 which is in normal range. My Spike dropped from 3.06 but has only gone down .1 the last five months. From 1.09 to .99. Thanks.

any comments about the JNJ trial study from anyone? my husband is on it and would like to share any info