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.

Hi All - Just wondering when this group will meet up again via video link? How often do we all catch up as a group? I am just starting now to read through the postings of this group. I am excited to find this group and feel that we can share so much info with one another. I was diagnosed with IgG Lamda Nov 22. Lambda light chain is 466 mg/L over Kappa of 9 mg/L, bone marrow 20%, paraprotein 20g/L (or 2 g/dl), in 24-hour specimen paraprotein only 0.01 g/L, PET scan clear, no lytic lesions or plasmacytomas on MRI and other bloods are stable but hemoglobulin on the low side a bit (118 g/l or 11.8 g/dl). I too am always fatigue and catch everything under the sun. I am wondering what blood test type are used to measure your light chain? My understanding is there are two main assays - Freelite and N Latex. The reason why I ask is that my Lambda levels vary significantly based on which one is used. Based on Freelite assay my light chain is Lambda 466 mg/L over Kappa of 9 mg/L but on the N Latex my light chain is Lambda 2230 mg/L over Kappa 8.86 mg/L - big difference, right? It is my understanding that the IMWG diagnostic guidelines for MM is based on Freelite assay given there is a low correlation between the two assays in clinical practice. Live long and smoulder.