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My experience in High Risk MGUS & Non High Risk SMM trial
I am currently enrolled in a clinical trial sponsored by Regeneron Pharmaceuticals. It is a Phase 2 Dose-Ranging and Interception Study of Linvoseltamab in Patients with High-Risk Monoclonal Gammopathy of Undetermined Significance or Non-High-Risk Smoldering Multiple Myeloma.
About me. I was first diagnosed with MGUS in the Winter of 2024. M-Spike.6 and elevated Lambda FLC of 118. Referred to a local oncologist who scheduled quarterly bloodwork. Both M-spike and Lambda flc increased modestly with each draw. November 2025 my m spike was 1.6 and lambda flc 375 with kappa lambda flc ratio of 18.1.
BMB done 1/2026. 10-15 % plasma cell percentage with gain of 1q, monosomy 13 and deletion of 16q.
Referred to Dana Farber in Boston. Enrolled in their clinical trial 24-135. Randomized into high dose track, 200 mg of the study drug Linvoseltamab .
I have IGG Lambda intermediate SMM. IGG is 2375, M-Spike is 1.8 and kappa lambda flc ratio is 28.1 at the start.
I just had my second step up infusion, 4 mg, last week. Third step up dose, 25 mg, scheduled for this Wednesday. First full dose, 200 mg, with be on 8/10. I received steroid and antihistamine prior to each infusion.
Would like to share my journey with anyone interested or in a similar situation.
Only side effects to date are a little sleep disruption I believe from the steroid , dexamethasone 40 mg.
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Congratulations and keep asking for Ivig. I have competed my treatment back in June and will need Ivig for the foreseeable future. It’s a powerful medication and it also stays in the body for a very long time
@maddogstormy
Just curious.....what was your experience with infections over the course of your treatment?
Were they frequent? Severity? If you are working did you have to take time off?
Hi thanks for the inquiry. My immune system crashed almost immediately once we hit full doses. I did not ask for time off the whole treatment and was fortunate to be able to coordinate my work on line when needed. I was extremely sick for 10 weeks with a cold that was severe. Hospitalization was not required or advisable. I continue to get minor illnesses, but nothing as severe as the cold. Right now I am on a double dose of Sulfa and another antibiotic due to a skin infection from treatment for a viral lesion. The IVIG infusion has been key in my recovery and I continue to maintain strict and some what harsh quarantine protocols. And I am also starting a new job that is thrilling.
Thank you for sharing your experience with me. Good luck with your new job!!!
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