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High Risk Smoldering Multiple Myeloma (HR-SMM)

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You’ve been diagnosed with High Risk Smoldering Multiple Myeloma (HR-SMM). Your oncologist has told you about a clinical trial to treat HR-SMM that may slow your progression to full multiple myeloma.

  • What issues should you consider before entering this clinical trial?
  • How would your thinking change if you weren’t high-risk smoldering multiple myeloma 

Medicare  covers chemotherapy for cancer. Smoldering multiple myeloma is not cancer. It is a form of pre-cancer.

While your clinical trial may pay for chemo during the trial, what happens if the clinical trial ends or if you leave the clinical trial? Once you begin chemo to treat either HR-SMM or full MM, you will undergo treatment, in and out of remission, for the rest of your life. Or until you are cured of MM.

Adverse Events aka side effects. Understand your risk of adverse events as the vast majority of patients experience side effects that are  grade 3 or higher:

“Grade ≥ 3 hematologic toxicities were noted in 18%, and non­hematologic toxicities were seen in 61%. There were four deaths, including two related to COVID-19, one due to respiratory syncytial virus, and one due to disease progression following completion of treatment. Dose reductions were required for carfilzomib in 12 patients, for lenalidomide in 12 patients, and for dexamethasone in 14 patients, he said…”

I am a long-term MM survivor. I entered 3 different clinical trials when I was undergoing active therapies. I did so for two reasons:

  1. First, because I was told that my life would last for about 3-5 more years. This was the life expectancy of MM when I was diagnosed in early 1994. 
  2. Secondly, I entered the clinical trials because I thought that trials were the best way to further knowledge about MM. 

Experience has taught me that oncology may not explain the full picture to patients who enroll in clinical trials.

What are the pros and cons of cancer clinical trials?


  1. Access to new treatments: Clinical trials offer access to potentially groundbreaking treatments that may not yet be widely available. This can provide hope for patients who have exhausted standard treatment options.
  2. Contribution to medical research: Participating in a clinical trial contributes valuable data to medical research, helping to advance scientific understanding and potentially leading to improved cancer treatments in the future.
  3. Close monitoring and care: Patients in clinical trials often receive close monitoring and care from experienced medical professionals, including regular check-ups and follow-ups, which can enhance overall health management.
  4. Possibility of better outcomes: Some clinical trials test new treatments that may be more effective or have fewer side effects compared to standard treatments, potentially leading to better outcomes for participants.
  5. Access to multidisciplinary expertise: Clinical trials are usually conducted in specialized medical centers with multidisciplinary teams, providing patients with access to a wide range of expertise and resources.


  1. Uncertainty: Since clinical trials test new treatments, their effectiveness and potential side effects may not be fully understood. This uncertainty can be unsettling for patients and their families.
  2. Risk of side effects: Experimental treatments may have unknown or severe side effects that can be harmful to patients. This risk must be carefully weighed against potential benefits.
  3. Stricter eligibility criteria: Clinical trials often have strict eligibility criteria, which may exclude certain patients based on factors such as age, stage of cancer, or previous treatments. This can limit participation for some individuals.
  4. Additional time and effort: Participating in a clinical trial often requires extra time and effort for patients, including more frequent hospital visits, additional tests, and paperwork.
  5. Blindness to treatment: In some clinical trials, participants may receive a placebo or standard treatment instead of the experimental treatment being tested. This means that they may not directly benefit from the new treatment being evaluated.

Have you been diagnosed with high-risk smoldering multiple myeloma? If you are interested in learning more about evidence-based therapies cited to reduce the risk of a full MM diagnosis send me an email at David.PeopleBeatingCancer@gmail.com






David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBetingCancer

Risk Stratification Models Overestimate Progression Risk in Contemporary Patients with Smoldering Multiple Myeloma (SMM)

Historically, risk of progression from SMM to MM was 10% per year in the first 5 years. However, since then, the definition and characteristics of the SMM patient population have changed substantially.

First, IMWG diagnostic criteria for MM in 2014 changed to include biomarker-only myeloma (SLiM), reclassifying asymptomatic patients previously considered SMM.

Second, incorporation of advanced imaging (CT, PET/CT, MRI) identified bone disease with greater sensitivity. Hence, we hypothesized that in the contemporary era, the risk of progression from SMM to MM would be markedly lower than historically…

Methods: We performed a retrospective cohort study of consecutive patients with SMM at Columbia University Irving Medical Center from 2014-2022 and observed without therapeutic intervention. Our primary objective was to measure cumulative incidence of progression to MM and to characterize progression events. We also calculated predicted 2-year risk of progression by different risk-stratification models (Mayo 20/2/20, PANGEA, IMWG SMM model) in our cohort…

The cumulative incidence of progression to MM (CRAB/SLiM) at 1, 2, 3, and 4 years from SMM diagnosis was 3.1% (95% CI, 0.99-9.1), 7.7% (95% CI, 3.7-15.3), 13.9% (95% CI, 8.1-23.1), and 17.1% (95% CI, 10.3-27.1) respectively [Figure 1]…

The predicted median 2-year risk of progression to MM with different risk-stratification models were as follows: PANGEA with Bone Marrow (BM): 5.75% (range, 1.2-42); PANGEA without BM: 4.6% (0.7-26.6); Mayo 20/2/20: 9.7% (9.7-47.4); IMWG SMM: 26% (3.8-73). Figure 2 shows Sankey diagram of predicted risk tertiles for patients at SMM diagnosis by different models.

Notably, a substantial proportion of high-risk patients by 20/2/20, who are currently considered for therapeutic intervention, were re-assigned to intermediate risk (2-year risk of progression 8.1-20%) by PANGEA-BM.

Conclusion: The risk of progression to MM among this cohort of contemporary patients with SMM is <5% per year for the 1 st 4 years, which is substantially lower than the historical rate of 10% per year.

Morbid progression such as renal failure or fractures are very infrequent, with anemia being the most common MDE.

Prospective studies testing active surveillance strategies are needed in contemporary SMM cohorts to determine the optimal approach to these patients and ensure balancing of potential risks and benefits of treatment.”



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