Smoldering Multiple Myeloma and symptoms

@kansasjayhawk
Thank you that’s good. So you’re a Jayhawk fan! I had no real side effects from Ivig infusions except a headache a couple of times.

Hi. Congratulations on beginning your treatment. For me the treatment hit my immune system harder than I expected. It helped a lot when I was given IVIG infusions which will continue until my immune system begins to function.
Fatigue was and continues to be significant.
I am finally designated CR. My bone marrow biopsy last week results are not yet complete. Although it is clear I am not yet MRD Negative.
I am describing this stage as a kind of recovery. It’s different and unfamiliar territory for me. I am shocked at how short this has been and how long it feels.
I would say I am not even sure how to talk about it or make sense of this yet.
I do think and I might even feel like I am getting better.
I hope that is helpful. I am sure every person who receives this treatment will have a different experience.
I also know that the whole team at Dana Farber is amazing. I am fortunate to be there.

Am high risk smoldering MM. Going for my second PET scan Thursday as a part of "watchful waiting." No symptoms, I guess. This disease is supposedly rare, but it seems like an awful lot of people have it.

@rimord

Just curious. If you are high risk SMM why the watch and wait? Did your most recent BMB include a FISH panel?

Might want to check out the following:
The U.S. Food and Drug Administration (FDA) approved Darzalex Faspro (daratumumab and hyaluronidase-fihj) on November 6, 2025, as the first and only authorized treatment for adults with high-risk smoldering multiple myeloma (SMM). It is given as a subcutaneous injection to intercept disease progression before it becomes active multiple myeloma.

Apparently has been shown to delay progression.

Another option for high risk SMM is bi- or tri-specific antibodies; fewer side effects than Darzalex Faspro and clinical trials last a few months rather than the longer time of Faspro. I tried to get on a clinical trial for bispecific antibodies for my IgA Kappa high risk SMM, but my eGFR was too low (they wanted 60 and greater kidney function). I don't see any benefit for Darzalex Faspro over I-VRD treatment, but then I am likely close to MM with kappa of 1,300, kappa/lambda of 94, M spike 1.5, and my BMB two years ago was 15% when my numbers were a lot lower (I get a new BMB on Monday). Clinical trials can be found online thru ClinicalTrials.gov.

Another option for high risk SMM is bi- or tri-specific antibodies; fewer side effects than Darzalex Faspro and clinical trials last a few months rather than the longer time of Faspro. I tried to get on a clinical trial for bispecific antibodies for my IgA Kappa high risk SMM, but my eGFR was too low (they wanted 60 and greater kidney function). I don't see any benefit for Darzalex Faspro over I-VRD treatment, but then I am likely close to MM with kappa of 1,300, kappa/lambda of 94, M spike 1.5, and my BMB two years ago was 15% when my numbers were a lot lower (I get a new BMB on Monday). Clinical trials can be found online thru ClinicalTrials.gov.

@rimrod, @righty01
I was diagnosed w high risk SMM a year ago. My oncologist started me on Darzalex Faspro in March of this year and it has brought my numbers down remarkably. I feel good about taking treatment, doing something other than “waiting.” Ask your doctor if this treatment might be right for you. Good luck.

@maddogstormy
I am also enrolled in the Dana Farber clinical trial 24-135. Just received my second step up dose of Linvoseltamab 4 mg along with the steroid and antihistamine.

I have intermediate SMM with gain 1q and monosomy 13. IGG Lambda. M-spike 1.8 and flc ratio of 30.1. Plasma cell percentage 10-15%.

Randomized into 200 mg track. One more step up dose, 25 mg, next week before my first full dose, 200 mg, on 8/10.

Just curious, what did you find most challenging about your experience.