Hi again.
I received my last dose of linvoseltamab on June 2nd in a trial at Dana-Farber for smoldering multiple myeloma. IVIG (Privigen) infusions are scheduled every four weeks, and I’m now starting recovery now day 32.
This medication affects everyone differently, and my experience is just one. It took my M-spike and free light chains out of detectable range. It also had an enormous off-target impact on much of my immune system ie my IgA and IgM are both negligible. I tried to keep working in person until I got too sick from common colds and respiratory infections.
One thing I’d flag for others: I wish they had started the IVIG infusions four weeks earlier than they did. Insurance was challenging and mine were delayed about five weeks. If you’re going into this, it may be worth asking about immunoglobulin support early.
I would not change my decision to participate. I can see a longer horizon than I could a year ago, when I could barely walk.
I’m finding recovery to be a complicated and delicate process, progress and regress, sometimes in the same day. The intense fatigue arrives randomly and can be hard. I’m also blessed with a loving family and community, and I do my best to stay connected as I move through these changes.
Thank you all for this space to share a bit of my story. I’m inspired by you.
Brian