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.
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“we need more data from randomized clinical trials before resorting to highly intense therapy that is more toxic and unlikely to lead to a cure outside the setting of a clinical trial…”
Hello David- How are you? I hope this email finds you well and healthy! I have a few questions for you. My ASCT was 3 years ago this coming May. I have been on Revlimid/lenalidomide (10 mg) continuously for the past year and a half. I have light chain Kappa myeloma. My light chains and immunoglobulin levels go up a bit every month.
My hematologist has suggested to enter the DREAMM7 clinical trial study-
Of course this whole thing will include all the harmful scans every 6 months (every 6 months = 10 years of normal radiation), bone marrow biopsy every 6 months and blood work.
One of my questions for my hematologist is: what is the treatment if I don’t enter the study? Surely there must be less harmful treatments?!?
I have been doing infrared sauna for the past 6 weeks for 50 minutes every other day. Hopefully it shows in my results tomorrow.
Overall I do not feel bad, quite ok actually. Biked 28 km yesterday and did 58 km a few weeks ago (electric bike but you still have to push). Sophie
I am well, thanks. I live with several long-term and late stage side effects but I am doing pretty well.
I will cut and paste your comments and reply to each.
1) “They go up a bit every month. Tomorrow I will get this month’s result. (kappa/lambda ratio is also going up, all other bloodwork fine so far).”
My thinking is that that you are experiencing a biochemical relapse. This simply means that you are relapsing slowly, your MM is not aggressive at this point and you have time to think, plan, etc. This is good.
2) “One of my questions for my hematologist is: what is the treatment if I don’t enter the study? Surely there must be less harmful treatments?!?”
Yes, this is your first relapse. You have many therapies to choose from, how much toxicity is up to you.
3) “Of course this whole thing will include all the harmful scans every 6 months (every 6 months = 10 years of normal radiation), bone marrow biopsy every 6 months and blood work.”
I agree with you. Radiation is the type of risk that I think is a problem with a trial that conventional oncology does not.
4) “My questions to you: what do you think of this DREAMM study?
In theory I agree with the concept of the importance of clinical trials. However, in practice, when talking to a MM survivor such as yourself, I have a difficult time encouraging the survivor to enter a trial when they have other, better therapies options- in my opinion anyway.
5) “Did you do intensive sauna therapy when you were at the Burzynski clinic? My natural therapist measures (kinesiology) that I will do/get better once the toxins are out.”
I have taken a sauna regularly for years (pre-covid…). I don’t remember if Whole body hyperthermia (WBH) was included in your version of the MM CC program but it is now. There is research showing that MM stem cells are killed at 102-104 degrees Fahrenheit. Detoxing heavy metals (mercury, cadmium, lead) is important as well.
The fact is there are a host of evidence-based but non-conventional therapies that I do even though I am in remission, and I think all MM patients should do. I am not saying not to undergo chemotherapy ever. I am saying that conventional oncology prescribes too much chemo, too much toxicity for the typical patient. This is much of the reason why I have a difficult time with clinical trials for survivors such as yourself.
I would have to study your specifics- age, diagnostic info, etc. to be able to give you are detailed answer. But based on our original communications, your MM was relatively early, not too advanced, relatively few symptoms, little damage. 3 years of remission from an ASCT and low-dose maintenance is pretty normal, pretty average.
Your future therapy plan depends largely on your goals of course, but I think the ratio of conventional to non- conventional should be more balanced. The DREAMM7 trial is, again, i my opinion, much too much toxicity for you at this time.
(6) “Overall I do not feel bad, quite ok actually. Biked 28 km yesterday and did 58 km a few weeks ago (electric bike but you still have to push), after all I am Dutch and the Netherlands is flat! I go for walks and we have a veggie garden.”
My experience and research leads me to believe that MM survivors must balance conventional/non-conventional in an effort to maintain physical and mental health. Too much toxicity will usually hamper quality-of-life.
All of this depends on your goals of course. Let me know if you have any questions.
“Introduction: Belantamab mafodotin (belamaf; GSK2857916) is a B-cell maturation antigen (BCMA)-targeting antibody-drug conjugate.
In the pivotal Phase II DREAMM-2 study, single-agent belamaf demonstrated deep and durable responses and a manageable safety profile in patients refractory and/or intolerant to ≥3 lines of therapy, including an anti-CD38 monoclonal antibody such as daratumumab (Lonial et al. Lancet Oncol 2020).
Responses were sustained at 13 months of follow-up with belamaf (2.5 mg/kg intravenously [IV] every 3 weeks [Q3W]); overall response rate (ORR) was 32% and median duration of response (DoR) was 11.0 months (Lonial et al. ASCO 2020 Poster 436)…
“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?…
Although cure is the ultimate goal of our long-term research, we need more data from randomized trials before resorting to highly intense therapy that is more toxic and unlikely to lead to a cure outside the setting of a clinical trial. On this one point, proponents of both cure and control can agree…”