I was diagnosed with Smoldering Multiple Myeloma in 2023.

One of the most fruststing things about active monitoring as opposed to treatment is that it feels like nothing is happening except that you're getting sicker. Your doctor is attempting to balance the risk of treatment with the risk of waiting. New therapies are making treatment safer, but the protocols for when the treatments can be used are slower to change. You can ALWAYS get a second opinion and a doctor shouldn't be offended if you do. You aren't questioning anyone's competence, you're just asking for a fresh look at the problem from someone with a new perspective. That perspective can be because they have different training, communicate with you better, have more experience with cases like yours or for whatever reason you picked them. Just tell your PCP what you need and ask them to make a referral.

I have MGUS too, stable these 5 years. But I would get a second opinion I think, from what you’ve described.
Can you see a MM specialist? Even if you have to travel for a consultation?
You might could get a telemedicine appointment where you send them your labwork and records in advance, then have a zoom meeting to review everything.

What led to your SMM diagnosis? Is your plasma cell percentage over 10%. Is your M-Spike over 2? Kappa Lambda flc ratio over 20? Are you low,intermediate or high risk SMM?

Renal insufficiency is often part of the CRAB criteria which is a progression from SMM to active multiple myeloma. Review the CRAB criteria if not familiar with it. Certainly you may want to be under the care of a MM specialist that only sees these patients so is familiar with all aspects of SMM/MM. I have both a local hematologist and a MM specialist at a major university hospital 2 hours away. I don’t want to fall through the cracks.

Each of us has to determine our own confidence in our physicians and the treatment we are or are not receiving. If you are questioning the diagnosis or the treatment then you need a second opinion.
I have SMM. I'm considered low risk but my bone marrow biopsy results were suppressed because I was on 25mg prednisone for PMR. I'm tapering down now and plan to be at 5mg for my SMM blood work in August. When I'm completely off prednisone, I will ask for a new bone marrow biopsy to see where my true risk lies. Each of us needs to be proactive in our care and treatment. I'm lucky in that both my rheumatologist and my hematologist oncologist listen to my concerns. Of course, the insurance company has requirements for approval and timing of treatment.

Has your Doctor looked at Darzalex? I was diagnosed w Smoldering Myeloma in August 2025. Started Darzalex in March 2026 and it has had immediate effects lowering my high risk numbers notably. I also recently got a Zoltronic Acid drip to bolster calcium and provide bone support. Just had second annual CT/PET and no lesions. Ask your physician about possible treatments to keep you from developing MM. Good luck!

@nursedb Definitely a second opinion with an MM specialist. My oncology appt is tomorrow. I'm 72, was diagnosed with high risk SMM two years ago, and already had chronic kidney disease stage 3a (3b with kappa proteins flooding kidneys) that resulted from norovirus 2.5 years ago. I'm on the 3 month watch and wait purgatory. No symptoms other than fatigue. My PET scan last summer was clean; it didn't show any lesions or MM nasties even though my previous year's BMB was 16% (likely diffuse, rather than concentrated cancer). At some point I will probably undergo I-VRD treatment followed by a SCT then maintenance. I looked at Darzalex but it mostly delays treatment and can have nasty side effects (good to ask Dr. tho). It is maddening having the cancer cells lurking and nothing to be done about them but wait, exercise (weights if aerobic is hard), and work on a positive attitude. I'm going to ask my doctor tomorrow what criteria/numbers are needed to start treatment (I used to be a research scientist so like info). If it helps you, much of my bloodwork is normal (Ca, Phos, Na, Albumin) or slightly above (creatinine 1.64 mg/dL but maybe sl. inflated from weight lifting). I have IgA kappa free light chain SMM with the 1q21 gain mutation; here are more numbers: Kappa 1,290 mg/dL, Kappa/Lambda 93, IgA 1,480 mg/dL M protein 1.4 g/dL (1.1 M spike), Beta-2 globulin 1.8 mg/dL (others normal or low). Tough juggling numbers in that the longer one can wait before treatment (assuming no advancement to MM), the greater chance of a cure, better options down the road, and more info on effects/side effects of newer drugs such as the CD-38 attacker. Some people also take high-dose bioavailble curcuminoids; hard to tell if they have worked for me or not. Here is a NEJM link for I-VRD: https://www.nejm.org/doi/full/10.1056/NEJMoa2400712