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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You have been diagnosed with incurable cancer with an average survival, according to the American Cancer Society, of 5-7 years depending on the stage at diagnosis.Your challenge as a newly diagnosed myeloma patient is to weigh the pros and cons of each approach. Is your multiple myeloma chemotherapy supposed to cure your MM or just control it?
While Dr. Martin does not come out an say so, he clearly cautions myeloma patients to consider all therapy regimens and not to simply jump into a stem cell transplant.
I have remained in complete remission from my multiple myeloma since April of 1999 by living an evidence-based, non-toxic, anti-MM lifestyle through nutrition, supplementation, bone health, mind-body, lifestyle, and more. I believe that multiple myeloma patients must use the best of both conventional (FDA approved) and non-conventional myeloma therapies.
In the article linked and excerpted below, Dr. Vincent Rajkumar presents a convincing and thoughtful discussion that all myeloma patients should read before therapy begins. Further, if a myeloma patient considers supplementation, nutrition and lifestyle therapies that have bee shown to have anti-cancer or anti-myeloma properties then Dr. Rajkumar’s argument for myeloma control is even more credible.
Have you been diagnosed with multiple myeloma? If so, what stage? Are you experiencing any symptoms such as bone damage, anemia or kidney involvement?
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“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, multi-transplant 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?..”
The cure-vs-control debate colors the approach to the treatment of smoldering (asymptomatic) disease, duration of therapy, choice of drugs, and many other clinical decisions in myeloma. It also substantially affects the interpretation of study results and the approach to the care of patients with myeloma.
So, should it be cure or control for myeloma? In the setting of designing and conducting clinical trials, both strategies should be explored simultaneously. Some patients desire a potentially curative approach and are not greatly concerned about the risk of adverse events, whereas others think the quality of life is more important than overall survival and are unwilling to risk their quality of life for a potential cure. Having clinical trials available to cater to both types of patients is important. For example, the Mayo Clinic myeloma group is currently pursuing an approach with single-agent lenalidomide as initial therapy for myeloma with other drugs added as needed, with an emphasis on quality of life and disease control. At the same time, we are testing a multidrug combination strategy with 4 active agents in the attempt to develop a curative “myeloma CHOP (cyclophosphamide-hydroxydaunomycin [doxoru-bicin]-vincristine [Oncovin]-prednisone)” regimen; the CHOP regimen has been used successfully to cure large cell lymphoma. Thankfully, many centers have a similar selection of trials targeting both options.
Outside of a clinical trial setting, I prefer disease control as the treatment goal, except in selected high-risk patients in whom an aggressive approach to achieving CR may be the only route to long-term survival.62–65 The disease control approach involves targeting very good partial response (minimal residual disease) rather than CR as a goal; using limited, less intense therapy first and moving to more aggressive approaches as need arises (sequential approach); allowing patients to help determine the timing and number of transplants (patient choice); and avoiding allogeneic transplant. 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.”
“…the simplest way that I really like is to say that a myeloma patient grows old and dies from something other than myeloma….”
Having studied conventional multiple myeloma (MM) for years now, I can understand why oncology needs to have three types of multiple myeloma cures.
Conventional oncology has added the term “functional cure” as well as the term “relative survival” to the term “true cure.” Because conventional oncology can’t provide a “true cure” for MM patients and survivors, they need to slice and dice the issue in an effort to obfuscate the issue as much as possible.
When I was first diagnosed with MM in 1994 and meeting with myeloma experts in an effort to better understand my incurable blood cancer, my wife and I met with Dr.Brian Durie in Los Angeles at Cedar-Sinai.
I found Dr. Durie to be very knowledgable. More importantly, I found Dr. Durie to be a good person. I think the IMF does good work.
As a long-term multple myeloma (MM) survivor however, I don’t think there are three different definitions for what it means to cure MM. At least not to a newly diagnosed MM patient, survivor or caregiver anyway.
It is important, however, for MM patients, survivors and caregivers to understand these three terms because their oncologists may use them at any given time during their diagnosis and treatment. For example, if your oncologist recommends what he/she refers to a “potentially curative therapy” then you need to understand what he/she means. At least you must understand that no MM patient has ever been truly cured by an allogenaic stem cell transplant. These patients may have endured painful short, long-term and late stage side effects but never a true cure.
Dr. Durie knows this is the meaning of cure because he concludes the discussion below with what I consider the actual definition of the word cure for MM.
“And so, the BOTTOM LINE is that a cure can be considered in a variety of ways, but perhaps the simplest way that I really like is to say that a MM patient grows old and dies from something other than myeloma.”
I don’t think “cure” for MM can be considered in a variety of ways. But then again, I’m not a board certified oncologist. I’m only a long-term MM survivor.
There are three ways cure can be considered: functional cure, relative survival, and true cure.
“This week’s “Ask Dr. Durie” comes from a patient who wants to know, “What is cure?” And this is a very reasonable question from a patient who has been watching this word used a lot on the internet in discussions about new treatments for myeloma. And, what do we really mean by cure for myeloma patients?
And so, there have been three ways of looking at what cure might mean for patients with myeloma. The first one that’s been used for a number of years is what’s called “Functional Cure.” And this is a situation where a patient has had an excellent response to treatment but has a little bit of myeloma left but is stable and is in remission perhaps five years, ten years, or even twenty years from diagnosis, but clearly is not completely eradicated from having myeloma.
The second type of way of looking at cure is to say that a MM patient has the same survival of a similar type of individual, of the same sex, of the same age, but who do not have MM. And this is called “relative survival” where the relative survival versus a matched individual without myeloma is the same. And so, this is also called a “cure fraction” in some publications. So, this is a second way of looking at cure.
The third way is what one could call true cure, where you have looked in every sensitive way that you can to try to find evidence of myeloma remaining in the body, using testing for minimal residual disease, using PET/CT scanning, every technique that we have to see if there is any evidence of MM and finding none, one can say that a patient may be truly cured.
And so, the BOTTOM LINE is that a cure can be considered in a variety of ways, but perhaps the simplest way that I really like is to say that a MM patient grows old and dies from something other than myeloma. And this would be truly wonderful and truly meet any and every definition of CU.