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SMM, Stage 1 Longer Prognosis
Standard-risk patients should never be undertreated, as they derive the highest relative benefit from using the best available registered therapies. (Oncology and I disagree…)
Hi David – I found you on one of the FB groups. New diagnosis which given my lifestyle, has stunned me. I work mainly with naturopathic physicians, eat organic whole foods, take supplements, do yoga, meditate etc. I know a lot about health – but not about Smoldering Multiple Myeloma (SMM) or full-blown Multiple Myeloma.
The thought of the toxicity of what my oncologist is recommending is terrifying me. I trust him – but recognize he is in the conventional box. I am also working with a naturopathic oncologist but she does support his treatment plan and offers supplements which I’ve been on since we discovered the smoldering.
Clearly they didn’t work. My question is – given my knowledge of alternative health choices – do you think there will be further knowledge I can gain from your course? I’m trying to make rational decisions while feeling very frightened – a time we can do things like call psychics (yes, I did that) and talk to astrologers (did that too).
I want to make smart choices in what information I take. Thanks for taking the time to read this. Kathryn
Hi Kathryn-
You sent me one of the more entertaining introductory emails of any newly diagnosed SMM, MM patient. Thank you.
When I was first diagnosed, I tried:
- shark cartilage,
- apitherapy (bee venom),
- traditional chinese medicine (which may have helped actually)
- homeopathic remedies
and a host of other non-conventional therapies. I’ll always wonder if any of it helped…
I am sorry for your, is it SMM or full MM diagnosis? If you are young and just recently full MM you are early stage aka stage 1. Even with conventional therapies this diagnostic category has a much better prognosis than the averages that you may have read. The average NDMM patient is a 68 year old at stage 2,3 with a prognosis for an overall survival of 5-7 years. You didn’t mention your age but I’ll bet you are in a very different place than the average patient.
If you are still smoldering multiple myeloma, there is an increasing push on the part of conventional oncology to treat the patient with chemotherapy. I think it makes sense that a pre-myeloma patient can stall a diagnosis of full-blown MM but there is no reason to think that the patient’s life aka overall survival, is increased by giving the person chemotherapy.
If anything, more chemo would mean a shorter life with increased short, long-term and late stage side effects.
You are correct when you say that conventional oncology thinks in terms of conventional treatments. Your challenge will be that if you are newly diagnosed, the standard-of-care, FDA approved therapies of 4-6 courses of RVD, an autologous stem cell transplant and low-dose maintenance therapies is way too much toxicity, too much chemo for the young early stage NDMM patient.
The solution in my experience is a combination of low-dose conventional therapies combined with your lifestyle and the therapies recommended by your naturopath. I can also make an evidence-based argument for integrative therapies- nutritional supplementation that has been shown to enhance the efficacy of chemotherapy.
The answer to your question, “can you (me) help,” is yes. I think it is more focusing what you already know as well as what your naturopath knows. I will link several guides from the MM CC program below- the introduction guide will explain the program and then the cannabis guide and questions guides will give you a sense of both conventional and non-conventional aspects of managing MM.
Lastly, I believe that the more you learn about your SMM and MM, the less frightened you will become.
Let me know if you have any questions. Hang in there,
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
Short overview on the current standard of treatment in newly diagnosed multiple myeloma
“The treatment of newly diagnosed multiple myeloma has changed dramatically over the past 20 years, from near uniform application of chemotherapy to a patient performance status- and risk-based approach.
Furthermore, initiation of treatment criteria have evolved from a pure end-organ damage-based definition to include risk factors of transformation to frank myeloma.
Besides, the mainly cytogenetically defined Multiple Myeloma (MM) risk status, transplant eligibility of patients still serves primarily to allocate patients within a rational treatment algorithm.
While all transplant-eligible MM patients should receive a triplet induction therapy followed by autologous transplantation and, in most cases, lenalidomide maintenance, other therapeutic elements (e. g., other maintenance strategies, consolidation, tandem transplantation,..) have to be decided on an individualized appraisal of risk and toxicities.
Standard-risk patients should never be undertreated, as they derive the highest relative benefit from using the best available registered therapies. However, high-risk patients should be preferentially treated inside clinical trials testing additive innovative treatments, as the improvement in the prognosis of this group of patients by standard therapies has been underwhelming.
Furthermore, the evaluation process of non-transplant-eligible patients should always comprise an evaluation of performance status, frailty, and comorbidities (e. g., a comprehensive geriatric assessment) to facilitate the allocation of individualized therapies.”
Treatment of Stage I & “Smoldering” Multiple Myeloma (SMM)
“Stage I multiple myeloma occurs when there is a relatively small amount of cancer in the body.
The major decisions concerning treatment of stage I multiple myeloma are if and when treatment should be initiated. It may be useful to think of monoclonal gammopathy of undetermined significance (MGUS), smoldering multiple myeloma, and stage I multiple myeloma as a continuation or gradual progression of multiple myeloma. Patients with these conditions may not require immediate treatment, as these conditions may persist and be stable for several years. Patients should however be followed at regular intervals by their physician in order to detect clinical signs or symptoms that indicate myeloma progression.(1)..
Smoldering Myeloma (SMM)
Smoldering myeloma is considered to be a pre-cancerous condition, in which patients do not yet display any symptoms of multiple myeloma, but are at a high risk of progressing to multiple myeloma. The criteria for smoldering myeloma are:
- Serum monoclonal protein level of 3 grams per deciliter or more
- Proportion of plasma cells in the bone marrow of 10% or more.
- No other end-organ damage. End-organ damage that can result from plasma-cell proliferation includes high calcium levels, kidney problems, anemia, bone changes, and repeated bacterial infections…