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- SMM or MM- What’s the difference?
SMM or MM- What’s the difference?
Multiple myeloma is defined as smoldering (asymptomatic) or active (symptomatic). The NCCN criteria for smoldering multiple myeloma are as follows [2] :
Hi David – I have recently been diagnosed with IgA Lambda Multiple Myeloma. After four sets of labs have come back the same or improved, my oncologist has labeled me as “smoldering multiple myeloma” aka SMM.
My last labs improved after some positive changes after implementing dietary changes and adding supplements. My IgA dropped 50 points to 1663. My M-spike dropped from 1.9 to 1.5. And that was in just under two months.
My Bone Marrow Biopsy showed 20% plasma cell involvement. Next month I will be going to a myeloma specialist at UAMS in Arkansas. My hope is to have a clearer picture of what I have. I understand IgA is more rare and possibly progresses faster.
My ultimate goal would be to avoid chemo until it is absolutely necessary. I am trying to implement as many things as possible to prevent chemo.
I have gone to a mostly vegan diet and I am gluten free after my Naturopath discovered I am highly allergic to gluten. I am also following Margaret’s Corner curcumin protocol and taking 8 grams of curcumin daily preceded by Quercetin and fish oil just before my evening meal. I am also on a variety of other supplements from my NP.
I was reading about taking Wobenzyme N here on PeopleBeatingCancer.org and was curious if that would be a good addition.
Do you have any suggested protocols you would suggest for me? I am desperate to stave off this disease as long as possible. I have no symptoms other than some random aches in my low back and shoulder, neither of which I can confirm are from myeloma. My skeletal survey was clear and I have no CRAB symptoms. I feel well and healthy, especially after making the changes I have made recently. So I would like to stay that way as long as possible. Any info you could give would be most appreciated.” Many thanks, Debby
Hi Debby,
I will excerpt your questions below. I do this to make sure I reply to you thoroughly.
1) “I have recently been diagnosed with IgA Lambda MM. After four sets of labs have come back the same or improved, my oncologist has labeled me as “smoldering”.
The link below outlines the formal diagnostic criteria for MGUS, SMM and MM. While a diagnosis of MM is a judgment call made by your oncologist, my opinion is that he was a bit aggressive in your initial diagnosis of IgA Lambda MM. When he saw your non-conventional efforts paying off, and he saw/heard you not wanting chemotherapy, I think he slowed down and decided you were pre-MM aka SMM.
2) “My last labs can be with some positive changes after implementing dietary changes and adding supplements.”
Yes, there are many evidence-based but non-toxic, non-conventional therapies shown to be cytotoxic (kill) MM. Anti-angiogenic nutrition, supplementation, lifestyle, more.
3) “…My IgA went dropped 50 points to 1663. My M-spike dropped from 1.9 to 1.5. And that was in just under two months. My BMB showed 20% plasma cell involvement.”
According to the criteria linked below, an m-spike of less than 3.0 is SMM, not MM. While I think your IgA levels are above the normal range, the trend is downward and you have no other CRAB symptoms. As for the level of plasma cells in your bone marrow, the definition of MM is plasma levels above 30%. By most any measure, you are pre-MM (SMM) not full-blown MM.
4) “Next month I will be going to a myeloma specialist at UAMS in Arkansas.”
Please understand that while UAMS is a top-notch MM center of excellence, they are as aggressive as there is when talking about conventional MM therapies. I will link an article below about the main philosophy in MM treatment called the Cure vs. Control debate. I would encourage you to also consult with a MM specialist named James Berenson M.D.
5) “My ultimate goal would be to avoid chemo until it is absolutely necessary. I am trying to implement as many things as possible to prevent chemo.”
I agree with this approach. I also subscribe to the idea that it is expected for the MM patient to undergo chemotherapy as needed. The issue is the amount of toxicity that is needed to manage a person’s MM. Standard-of-care regimens are much too much chemo, in my experience.
Also keep in mind that everything you are now doing is what research considers to be “pre-habilitation.” As if you are getting in shape to undergo chemo. Studies show that you will respond better, heal faster after you pre-habilitate.
6) “I have gone to a mostly vegan diet and I am gluten free after my Naturopath discovered I am highly allergic to gluten. I am also following Margaret’s Corner curcumin protocol and taking 8 grams of curcumin daily preceded by Quercetin and fish oil just before my evening meal. I am also on a variety of other supplements from my NP.”
I agree with everything you are doing. I consider Margaret to be the champion SMM survivor alive today. I also take curcumin, quercetin and fish oil.
Dedra, it is possible that you can maintain your pre-MM status for years. Margaret has. At the same time, I think it is good to be prepared for the possibility of undergoing conventional therapies if need be. It is the amount of chemo that is the issue in my experience. Less is more…
Eat cleanly, exercise, supplement, get plenty of sleep. Let me know if you have any questions.
Hang in there,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Multiple Myeloma Guidelines
Diagnostic criteria
Multiple myeloma is defined as smoldering (asymptomatic) or active (symptomatic). The NCCN criteria for smoldering multiple myeloma are as follows [2] :
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Serum monoclonal protein ≥3 g/dL, or
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Bence Jones protein ≥500 mg/24 h and/or
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Clonal bone marrow plasma cells 10%–59% and
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Absence of myeloma-defining events or amyloidosis
The NCCN also recommends that a patient whose bone survey is negative be assessed for bone disease with whole-body skeletal MRI, FDG PET/CT, of low-dose CT to differentiate active from smoldering MM. [2]
In the NCCN guidelines, active multiple myeloma is no longer diagnosed using the CRAB criteria (hyperCalcemia, Renal failure, Anemia, Bone lesions) for end-organ damage. The current diagnostic criteria for symptomatic multiple myeloma are as follows [2] :
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Clonal bone marrow plasma cells ≥10% or bony or extramedullary plasmacytoma (confirmed by biopsy)
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One or more myeloma-defining events.
Myeloma-defining events include the following [2] :
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Serum calcium level > 0.25 mmol/L (> 1 mg/dL) higher than the upper limit of normal or > 2.75 mmol/L (> 11 mg/dL)
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Renal insufficiency (creatinine > 2 mg/dL [> 177 μmol/L] or creatinine clearance < 40 mL/min)
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Anemia (hemoglobin < 10 g/dL or hemoglobin > 2 g/dL below the lower limit of normal)
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One or more osteolytic bone lesions on skeletal radiography, CT, or FDG PET-CT
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Clonal bone marrow plasma cells ≥60%
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Abnormal serum free light chain (FLC) ratio ≥100 (involved kappa) or < 0.01 (involved lambda)
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One or more focal ≥5 mm lesions on MRI scans
In November 2014, the International Myeloma Working Group added the following criteria to the CRAB criteria for multiple myeloma [1] :
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Bone marrow plasma cells (BMPCs) ≥60%
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Involved/uninvolved serum free light chain ratio ≥100
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Abnormal MRI with more than one focal lesion, with each lesion >5 mm
The International Working Group noted that these findings have been “associated with near inevitable development of CRAB features in patients who would otherwise be regarded as having smouldering multiple myeloma.” [128] The presence of any of the CRAB criteria or any of these three additional criteria justifies therapy…”