Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.
Click the orange button to the right to learn more about what you can start doing today.
Hi David- I have been smouldering (SMM) for 7 years and now have active myeloma. I feel well- no symptoms and my consultant (oncologist) wants me on the 3 medications you mention. Seems very aggressive and toxic. I am a fit 75 year old.
Thanks for what you are doing to help us all.
Any advice would be appreciated as they want me to decide within 2 weeks,
Thanks Barbara
I live in England UK
Hi Barbara-
I am sorry to learn of your MM diagnosis. However as an early, stage 1 newly diagnosed MM patient, your prognosis is good. I believe you are stage 1 for the following reasons.
1) you progressed from pre-MM (SMM) to full MM recently.
2) you seem to be asymptomatic- meaning no CRAB symptoms, no end organ damage-
You are correct. The standard of care induction therapy is RVD (revlimid, velcade, dexamethasone) and it is aggressive. I’m not sure if the NHS has included darzelex in the English version of induction therapy.
To understand the aggressive philosophy of conventional oncology read the cure vs. control debate linked below-
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3923461/
The FDA and NHS promote one standard of care that applies to ALL newly diagnosed MM patients regardless of age, stage, symptoms, etc. MM is a rare blood cancer so my thinking is that it is too difficult to promote many different SOC therapy plans.
Your consultant will also probably promote an ASCT and low dose maintenance therapy to follow. Again, all aggressive.
In the US, 96% of all NDMM patients are advanced (stage 2,3). This group of patients usually benefit from aggressive therapy simply because they have more MM in their bones.
You are an outlier (I mean this is a positive way :-). Meaning you don’t fit the averages. My guess is that you discovered your SMM 7 years ago by accident.
Ideas to change your aggressive SOC therapy plan are:
1) In the US, the age for “elderly MM patients) is 75. I know you don’t look elderly but the SOC for elderly patients is low dose therapy meaning low dose revlimid plus dexamethasone.
2) Another idea would be to have your consultant buy into “RVD lite.” This is RVD but at much lower doses aka less toxicity. If you are tested monthly you can limit the monthly doses to only as much chemo needed to make your numbers come back to the normal range.
3) Lastly, you can undergo the usual SOC regimen but again, limit the rounds of therapy- meaning stop chemo when you reach remission.
The bottom line is the relationship you have with your consultant. Can the two of you agree on your less aggressive therapy plan?
Let me know if you have any questions.
Hang in there,
David Emerson
Although not often openly acknowledged, “cure vs control” is the dominant philosophical difference behind many of the strategies, trials, and debates related to the management of myeloma. Should we treat patients with myeloma with multidrug, multitransplant combinations with the goal of potentially curing a subset of patients, recognizing that the risk of adverse events and effect on quality of life will be substantial? Or should we address myeloma as a chronic incurable condition with the goal of disease control, using the least toxic regimens, emphasizing a balance between efficacy and quality of life, and reserving more aggressive therapy for later?
To be sure, if cure were known to be possible (with a reasonable probability) in myeloma, it would undoubtedly be the preferred therapeutic goal of most patients and physicians. But this is not the case.
Myeloma is generally not considered a curable disease; however, new definitions of cure have been suggested, including operational cure, which is defined as a sustained complete response (CR) for a prolonged period.1,2 Cure vs control is debated because the strategies currently being tested are not truly curative but rather are intended to maximize response rates in the hope that they will translate into an operational cure for a subset of patients.
For decades, the treatment of myeloma was restricted to conventional chemotherapy with alkylators and corticosteroids, and the question of cure vs control never arose. The response rate with alkylators and corticosteroids was only about 50%, and CR3,4 was rare. Cure was never a goal of therapy because it was assumed to be unattainable. Instead, the goal was to control the disease as much as possible, providing the best quality of life to the patient for the longest duration by judicious, intermittent use of the 2 available classes of active chemotherapeutic agents.
In the 1990s, high-dose therapy with autologous stem cell transplant (ASCT) became part of standard practice when it was found to prolong survival compared with conventional chemotherapy.5–7Subsequently, bisphosphonates were found to be effective in decreasing the incidence of bone lesions.8,9
In the past decade, thalidomide,10 bortezomib,11–13 and lenalidomide14,15 emerged as effective agents for the treatment of myeloma, producing spectacular results in combination with other known agents in terms of response rate, CR rate, progression-free survival (PFS), and (more recently) overall survival. Numerous combinations have been developed, resulting in a veritable alphabet soup of clinical trials,16 and drug combinations are vying with each other for the highest response rate (and prominence).17,18
The results obtained with new combinations have indeed been remarkable and have prompted a relatively new philosophy of treating myeloma with the goal of potential cure rather than disease control. These philosophical differences underpin the various clinically relevant debates regarding myeloma currently confronting patients and physicians.
In fact, it is not uncommon to find that well-meaning investigators interpret the same clinical trial data in opposite ways because they ascribe to different philosophies (cure vs control).19 Although this commentary focuses on myeloma, the cure-vs-control debate may be relevant to other similar chronic malignant and nonmalignant disorders.20–28