Diagnosed with SMM, SPB, or MGUS?

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MGUS Waiting Game???

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I am grateful to have found you! I am an intelligent & driven 72-year-old lady who does NOT want to play “the MGUS waiting game,” which is where I am. I learned to read doctors’ lab requests and to read & interpret my lab results after getting my basic health care at Duke University Medical Center, Durham, NC. I now live in FL.

I read my neurologist’s lab request & then my lab results and knew what I had (MGUS) before my oncologist had to tell me. I chose him in particular for his credentials. I was diagnosed in 11/24. I spent 2025 doing all the tests at least I hope that was all, but I will request any other tests as I pursue my quest to find someone addressing MGUS before the M Protein becomes M/MM.

Fortunately, I am an IgG. I am an ardent researcher. My oncologist is excellent, but works for a for-profit cancer center where he is now limited in his ability to help me on this journey. I have been assigned to a hematologist to see her every 3 months for labs. I am playing the waiting game for my M Protein to increase & become M/MM. I will not go quietly! If my research does not help me, then I pray it will help a person who develops MGUS & hopefully gets an early diagnosis and treatment for MGUS! Thank you. May God bless us all.



Dear IgG MGUS Patient,

It sounds like you have the right attitude to manage your pre-myeloma diagnosis. Remember that, according to research, the risk of MGUS increasing to full MM is about 1% annually. The PeopleBeatingCancer Pre-MM course can help you reduce your risk of MM further.

I often tell MGUS patients that exercise, nutrition, supplementation, and lifestyle therapies will help them avoid the common chronic diseases they might develop otherwise. Meaning, their diagnosis of pre-MM will develop into a longer, healthier life than they would normally.

Regular diagnostic testing will help you keep an eye on your health. The lengthy testing might get old after a while, but the information is worth it to you.

If you ever do progress to full MM, remember that you will probably be early MM, aka stage 1, which has a much longer prognosis than the average diagnosis of MM, which is usually stage 2 or stage 3.

I am a long-term MM survivor. I welcome any questions you have about pre- or full MM.

Good luck,

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Patterns of survival and causes of death following a diagnosis of monoclonal gammopathy of undetermined significance: a population-based study

Background

There are limited data on survival patterns among patients with monoclonal gammopathy of undetermined significance.

Design and Methods

We compared the survival of 4,259 patients with monoclonal gammopathy of undetermined significance, collected from hematology outpatient units in Sweden, with the survival of the general population by computing relative survival ratios. We also compared causes of death in these patients with those in 16,151 matched controls.

Results

One-, 5-, 10-, and 15-year relative survival ratios were 0.98 (95% CI 0.97–0.99), 0.93 (0.91–0.95), 0.82 (0.79–0.84), and 0.70 (0.64–0.76), respectively. Younger age at diagnosis of the gammopathy was associated with a significantly lower excess mortality compared to that in older patients (p<0.001). The excess mortality among patients with gammopathy increased with longer follow-up (p<0.0001). IgM (versus IgG/A) gammopathy was associated with a superior survival (p=0.038). Patients with monoclonal gammopathy of undetermined significance had an increased risk of dying from multiple myeloma (hazards ratio (HR)=553; 95% CI 77–3946), Waldenström’s macroglobulinemia (HR=∞), other lymphoproliferative malignancies (6.5; 2.8–15.1), other hematologic malignancies (22.9; 8.9–58.7), amyloidosis (HR=∞), bacterial infections (3.4; 1.7–6.7), ischemic heart disease (1.3; 1.1–1.4), other heart disorders (1.5; 1.2–1.8), other hematologic conditions (6.9; 2.7–18), liver (2.1; 1.1–4.2), and renal diseases (3.2; 2.0–4.9).

Conclusions

Our finding of decreased life expectancy in patients with monoclonal gammopathy of undetermined significance, which was most pronounced in the elderly and explained by both malignant transformation and non-malignant causes, is of importance in the understanding and clinical management of this disease. The underlying mechanisms may be causally related to the gammopathy, but may also be explained by underlying disease that led to the detection of the hematologic disease. Our results are of importance since they give a true estimation of survival in patients with monoclonal gammopathy of undetermined significance diagnosed in clinical practice.

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