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

I am at day 25 and my lymphocytes are high around 15. I have had two rounds of Dex and they aren't recommending more dex. Has anyone else had high lymphocytes and did they eventually go down?

Does any one else have other health issues beside MM. I have MM with 10% cryoglobulins, no bone lesions on PET scan. Currently showing remission. I have MGRS, which is Monoclonal Gammopathy of Renal Significance. My disease was discovered because kidneys were being wiped out and BP was spiking out of control. BP now 125/72. So, that is all good. I have had an illness called Polymyalgia Rheumatica (PMR) for over 20 years. Giant Cell Arteritis for at least ten years. Both cause pain and fatigue. Revlimid causes pain and fatigue. I also have SEVERE Diverticulosis. The severe in all caps is how the doctor wrote it on the colonoscopy report. Between that and the diarrhea caused by Revlimid it is a three ring circus. I have a chronic hip problem that ended up being torn hip tendons. That is going to require surgery. The tendon damage may be from inflammation from the PMR. So, how does a person cope? I think I have done a great job so far without getting down or depressed. I kept a positive attitude through SCT, and induction chemo. This hip surgery may be a bridge too far. Recovery takes about 6 months. I am wondering if there are others who are coping with multiple health issues.