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.

Can anyone share their experience with Healthtree CureHub?

Hello. I have had smm for a little over a year. I also have ckd 3a and fsgs. I have 15 percent involvement on a bone marrow test and my labs have been stable. My hemoglobin had been steady at 10.2 for many years ( seems to be my norm). Recently, ( last 4 months) my hemoglobin has dropped to +-9.6. I have been feeling very fatigued and almost like in a fog lately. My Hemotologist is deciding whether or not to start treatment for the smm or possibly now MM. He will decide by the November anppointment. Any thoughts? Thanks.

Carvykti starts in a few days. Should I expect loss of, or reduced appetite?