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Diagnosed with SMM, SPB, or MGUS?

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Increasing free light chain ratio?

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“While FLC ratio ≥100 is associated with a high risk of progression in patients with Smoldering Myeloma, it does not infer an imminent risk of progression…”

Hi David- I was diagnosed with Smoldering Myeloma (SMM) 18 months ago.  I fit many of the things you describe & now, because my plasma levels were high, when tested 18 months ago & now my Kappa, Lambda ratio (freelight chain ratio)  has gone over 100, to 114, after ranging between 45 & 98, for the past 18 months, the haematologist says it’s time to start the treatment that will lead up to a stem cell transplant.

The fact is that since my diagnosis of SMM, I’ve never felt better after

  • going on a plant based,
  • no gluten or
  • dairy diet,
  • I lost 10kg’s in 4 months.

Have continued with my fitness program & have had a cracker year on the bike, my first as a grand master (60+) athlete.

No symptoms whatsoever & the second CT scan I’ve just had, show, like the last one 18 months ago, no lesions on the bone at all.

Would really appreciate your input re how I can best benefit from your knowledge the best way forward for me. NOT keen on mainstream medication. Kind Regards Constance


Dear Constance,

I am sorry to read of your SMM diagnosis though great to see that you have improved your diet, lost weight and feel great. These lifestyle changes are the upside of a pre- multiple myeloma diagnosis.
Research shows that these changes/improvements will enable you to live better, longer regardless of what you do going forward. Further, by eating right, exercising etc, you have reduced your risk of a full MM.
Your therapy plan going forward depends on your goals. I will lay out some basic choices or plans for you below. Keep in mind that this is email and therefore a poor form of communication. Feel free to ask questions.
  1. The conventional therapy plan. Once you are formally diagnosed with MM and begin treatment, you will undergo induction (RVd- 4-6 courses) an autologous stem cell transplant and probably low-dose maintenance therapy.
  2. The non-conventional therapy plan. You can choose to pursue anti-angiogenic foods and supplements as well as lifestyle therapies shown to reduce your risk of a MM diagnosis.
  3. A combination of conventional and non-conventional therapy plan.  Undergo non-conventional therapies discussed in #2 but also undergo conventional induction therapies, at least until you achieve remission. Research confirms that you will respond well, with less toxicity (chemo) because you are early MM (less cancer burden) and you have been “pre habilitating.”
#1, the conventional therapy plan will provide a lot of toxicity and in all probability, a good remission. The main challenges you face are the toxicity and probable side effects. I never recovered fully from my own ASCT.
#2, the non-conventional therapy plan relies on your current stage of MM not progressing much if at all. Meaning, it is clear that you are feeling well, experiencing no symptoms (nerve, bone pain, etc.) and there is certainly reason to believe that non-conventional therapies can keep you in a SMM stage (search Margaret’s Corner) but it is impossible to predict the future.
#3 therapy plan depends on your relationship with your oncologist. Here in the U.S. there are only one or two oncologists who will work with MM patients to follow a low-dose, therapy plan. You can probably undergo non-conventional therapies but may have difficulty doing only say low-dose Revlimid or only one or two courses of induction therapy.
If you are interested in pursuing a low-dose approach to therapy, I can refer you to a MM specialist who is known for managing MM with low-dose conventional therapies. Though James Berenson’s clinic is in California and would require you to have an local oncologist who will carry out Dr. Berenson’s therapy plan.
Con, I hope the above makes sense to you. As I say, feel free to ask any questions you may have.
Hang in there,
David Emerson
  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


Evaluating serum-free light chain ratio as a biomarker for multiple myeloma.

Background: In 2014, the definition of multiple myeloma was updated to include serum free light chain (FLC) ratio ≥100 as a myeloma defining biomarker, based on retrospective data indicating a 2-year progression rate of 80% and a median time to progression (TTP) of 12 months associated with this marker.

However, two recent studies have reported lower 2-year progression rates, 30-44%, and longer median TTP of 40 months in patients with FLC ratio ≥100.

Because of the disparity in risk prediction by FLC ratio across studies, we were motivated to assess the risk of progression in patients with SMM and a FLC ratio ≥100.

Methods: We performed a retrospective analysis of patients diagnosed with SMM at Memorial Sloan Kettering Cancer Center between January 2000 and December 2017. Diagnosis of SMM and progression to MM was defined according to the International Myeloma Working Group (IMWG) criteria at the time of diagnosis. Kaplan-Meier method was used to assess TTP and generate survival curves, with log-rank test for comparison between groups.

Results: A total of 438 patients were included in the study, with a median follow-up time of 52 months. While all patients with a FLC ratio ≥100 (n = 66) had elevated involved FLC levels, 35 (53%) had an involved FLC concentration > 100 mg/L.

Per current diagnostic criteria, we only included patients with an involved FLC concentration > 100 mg/L in the FLC ratio ≥100 group, and found a median TTP of 31 months (95% confidence interval [CI] 16-59 months) and a 2-year progression rate of 49% (CI 28-63%).

In a sensitivity analysis including all 66 cases with FLC ratio ≥100 (independent of involved FLC concentration), we found the median TTP to be 41 months (CI 30-72 months), compared to 101 months for those with a FLC ratio < 100 (CI 78-127 months; p < 0.0001).

The risk of progression within 2 years was 35% (CI 22-46%) compared to 18% (CI 14-23%; p < 0.0001). Of note, 22 patients with a FLC ratio ≥100 were monitored expectantly for > 4 years, among whom 12 patients had an involved FLC level > 100 mg/L. Ten patients (7 with involved FLC level > 100 mg/L) were followed over a period ranging from 4 to 8.5 years before eventually progressing, and 12 patients (5 with involved FLC level > 100 mg/L) were followed between 4 and 8 years and did not progress during the study period.

Conclusions: While FLC ratio ≥100 is associated with a high risk of progression in patients with SMM, it does not infer an imminent risk of progression, defined by the IMWG as median TTP of 12 months and 2-year progression rate of at least 80%. On the contrary, select patients with FLC ratio ≥100 can be followed for many years without progressing and some may never progress despite long-term follow-up. These findings suggest that in patients where FLC ratio ≥100 is the only myeloma-defining event, other high-risk features as well as the evolution of FLCs over time should be considered in the decision to start a patient on treatment.

 

 

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