Has anyone post stem cell transplant been diagnosed with inflammation of the trigeminal nerve? Possibly a side effect from vaccines or chemo.

I am 36 years old and recently diagnosed with MM with AL Amyloidosis in March 2025 after experiencing swelling in my body and a bony lesion forming above my right eye. I started chemo (Darzalex Faspro + Cyclophosphamide + Velcade) in May 2025 and I receive it on a weekly basis. I’ve been told many times that I am not the typical demographic for this type of cancer and even more atypical because of the amyloidosis tacked on. I will likely have an ASCT at the end of this chemo regimen at the end of the year. Are there others who were diagnosed at a younger age and/or with amyloidosis? What has helped you throughout your journey, personally and work-wise? Mine is just getting started and I’m experiencing all kinds of highs and lows…while also maintaining a full-time career as a CPA.

Has anyone in the group who is IgG Kappa with a 1q gain who has had a ASCT opted to take a break from maintenance meds? The ASCT was in Dec of 2023. Then Darzelex for 18 months. Thanks for any feedback.

Day 14 Carvikti. Was treated on Day 7 with tocilizumab for CRS. I'm workng on overcoming weak appetite and eating issues by using high protein drinks and soups, along with yogurt and milkshakes. I'm looking forward to labs tomorrow to learn how my whites and reds are doing. Basically, I think my Carvikti is fairly typical so far.