My husband recently went through CAR T therapy (Carvykti). He is about 4 months post-infusion. He spent 21 days in the hospital with some CRS and HLH. Since being released he experiences severe muscle pain. His strength is not nearly what it was and experiences mild full body muscle pain during the day and at night some targeted intense muscle pain in his shoulders. It doesn't seem to be improving. He is also pretty foggy in the head in the mornings and night with very limited emotions. Anyone else with similar experience? Wondering if it will subside with time or if further treatment necessary?

Hello Everyone, Please review your Medicare coverage. Also be aware of a trend for some providers to stop taking Medicare Advantage Plans.

I am 56 years old and have had Multiple Myeloma for almost 12 years. I have a few lytic lesions and have Osteopenia. I have been doing weight bearing exercises (Planet Fitness) regularly and eating relatively healthy. I also take Vitamin D along with a daily multivitamin. In an effort to be proactive, I have asked my oncologist for ways to increase my bone strength and he has recommended bisphosphonates and I am scheduled to have Zometa infusions. If you have had Zometa Infusions, what has your experience been and would you recommend them?

Has anyone have any experience with Turkey Tail mushrooms? Specifically PSK (polysaccharide krestin) supplements? I know there is no research for this with multiple myeloma, but it has been shown to work extremely well for breast cancers.

I am on Velcade injections, and I am experiencing skin rash after each injection. The severity varies depending on the nurse’s technique. Some are better at this than others. I have been using hydrocortisone topical cream for the first few days after when area is inflamed, then recently I started using primrose oil after the inflammation is gone , to sooth the skin and help with healing. Any other suggestions to help the rash areas to fade?

I am 61 1/2 years old. I was diagnosed at the end of March, 2023. I am getting ready for the ASCT at the end of October. As everyone here knows, this is very anxiety provoking time for me. I have just finished 6 cycles of DRVD induction therapy which worked very well. I am still at the very good partial response, but my M spike is very low (0.1) with K/L ratio at normal range. I am about to undergo 24 hours urine test and my second BMB. Hoping for good results. I have always been very active. I do a lot of hiking almost daily (5 miles + ), as well as interval training, free weights and kettlebells workouts, yoga and Pilates. I am really worried about loosing my conditioning during ASCT process. I know many things can go wrong that leave you fatigued and unable to get out of bed. I really hope I can at least walk a bit. I will be an impatient at a BMT unit for 2 1/2 to 3 weeks. The unit has small gym. Can someone with the similar pre ASCT physical conditioning share their experience?

I'd like to know if anyone has experience with collecting and storing T cells before they're needed? Anyone's doctor discuss this with them? Do we know how long they're good for and will insurance pay for a 2nd collection if needed? TYIA.

Hi Everyone, Can anyone please let me know if they experienced neuro side effects after their CAR T cell transplant?

Hello everyone, I decided to have conscious sedation when getting my bone marrow biopsy, this was the first time so I didn't know what to expect. The biopsy went well, I remember thinking it is the only way to do this procedure. When I woke up from my nap I ended up with different side effects. Leg pain, nausea and vomiting, body aches, chills, temp of 101, and a pretty serious headache. Has anyone experienced anything like this? I want to know if it is a one off thing, or if it is something I need to avoid in the future.

Beyond Standard of Care Treatment for Light Chain (AL) Amyloidosis: The Promise of Tomorrow Presented by Heather Landau, MD Dr. Landau discussed the new emerging therapy for Amyloidosis, particularly the new and trial drugs targeted at removing and destroying amyloid fibrils.

I believe my Scripps doctor has saved my life. But due to insurace cancellations, I may have to look for another health plan. I hate to leave Scripps.