What happens after stem cell transplant relapse with myeloma?

Hi Robin. Welcome to the group. I’ve had MM for almost 5 1/2 years now. I failed 4 treatments. My first one was darzalex and dexamethasone, then added velcade but developed neuropathy. Then changed to ninlaro with the dara and dex, but still neuropathy. After 4+ years it was changed to selinexor and Pomalyst but my hair was thinning out a lot. I stopped that combo and had CAR-T cell infusion in March. Bone marrow biopsies are negative for MM plasma cells!! So thrilled! My providers are pleased also. I’m now in a clinical trial with elranatamab that will augment the T cells. I feel great and still fighting. Be well and hope you respond to the dara and Pomalyst. Keep us posted.

Is a car T cell infusion like a stem cell?

Hi Otis. Actually the CAR-T cell infusion is so much easier. The white cells are harvested from the blood thru a machine similar to dialysis and the rest of the blood is returned to the body. These cells are sent to a lab where they are genetically modified to dramatically increase the number and also made into “super” T cells. That takes about 4 weeks. About a week before the infusion I had 3 days of low dose chemo to lower the immune system to make room for the new CAR-T cells. Then I was admitted 2 days after the chemo and the next day I got my T-cells infusion thru a PICC line in my arm over about 45 minutes. I had a fever that night, was given a steroid and antibiotic IV treatment. This was called a CRS (cytokine release syndrome). I stayed in the hospital for 9 days to be monitored for any other side effects (headache, fatigue, confusion, seizures, etc. Then my husband and I stayed at a nearby hotel for 3 more weeks to be monitored by him for any side effects and go to appointments twice a week for labs and provider visits. So, after that one side effect, I felt fine. It was difficult to stay in Boston for a total of 5 weeks. It’s now been just over six months and I still feel great. Now I am enrolled in a clinical trial with an abdominal injection of elranatamab that will augment the T-cells to keep killing any cancer cells. This also means weekly labs and visits, then every other week. My bone marrow biopsy is negative and my providers are pleased. As with the stem cell transplant, it’s so much more complicated. I chose not to have that because it was too involved at my age (74). It’s all personal choice and what’s available nearby. Sorry for the long explanation 😊. Be well and keep me updated.

I have one of the world’s best oncologists. He has me on 1 Dexamethasone and a Darzalex infusion. Great numbers. Great results. On year 10 and so far so good. Bone pain is ramping up though. Get a good Pain Management Doctor to bypass uncaring state laws and allow your doctor to concentrate on healing you and not worry about his reputation.

Robin, Hang in there with the Darzalex. It works for me for 10 years now.

Welcome to the community! Relapse after stem cell transplant is understandably concerning, but many patients continue to have good responses to second-line treatments like the combination you're now receiving. Each person's journey with multiple myeloma is unique, and treatment options continue to evolve and improve over time. Have others in the community shared their experiences with similar treatment paths?

I also was on a revlimid but it caused the pulmonary embolism with me thank God the doctor called in time. My rebirth was in 2016. I use my own stem cells. It’s called autogamous they wash tear their selves out and put them back in my system. I was only in remission for seven months and have been actively doing chemo. One of the chemo has stopped working so now I’m doing a more aggressive treatment. I will never give up and I tell you to do the same just continue your fight. Your rebirth is what it is. It’s a new chance to live again Blessings 🙏🏽