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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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Myeloma – The Cure vs. Control Debate

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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.

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 cure vs. control of your disease. Is your multiple myeloma chemotherapy supposed to cure your MM or just control it?

Please watch this video of Dr. Tom Martin and listen for this comment–

  • At the 1: 00-minute mark you will hear Dr. Martin say “Is the myeloma causing end-organ damage? Not every myeloma patient needs treatment (mm chemotherapy).”
  • At the 4: 00-minute mark you will hear Dr. Martin discuss either/or the aggressive, toxic cure approach or the less aggressive control approach in multiple myeloma chemotherapy.

 

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?

Scroll down the page, post a question or comment and I will reply to you ASAP.

Thank you,

David Emerson

  • MM  survivor,
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

Treatment of Myeloma: Cure vs Control

“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?..”

Cure or Control?

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.– 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.”

Multiple Myeloma- Three types of “Cure” according to oncology- functional, relative and true-

“…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.

Recommended Reading:

How do we define cure for multiple myeloma?

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.

 

Leave a Comment:

40 comments
Rolf Otterud says 10 months ago

Hi, I am unable to watch the Youtube video with Dr Tom Martin. It says “the video is private”

Reply
    David Emerson says 10 months ago

    Hi Rolf-

    Apparently that specific video has been removed from youtube. Interesting. I try not to sound conspiratorial but I have to wonder if the video was removed because Dr. Martin goes on record as saying that an ASCT is not always necessary for the newly diagnosed MM patient.

    I will have to re-write that post.

    Thanks Rolf-

    David Emerson

    Reply
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Ronald Quasebarth says a couple of years ago

Thanks, much, Dave, so valuable and encouraging overview. I just started 15 mg of revlimid with acyclovir in cycles of 21days on and 7 off, with daratumamab injections once a week. So far I feel no major reactions. I also have permission to take a multi vite, msm, vit d, c, e, selenium, curcumin and green tea. I also many green veggies and organic soups et. My m-spike is 3.3 but I feel pretty healthy. As you may recall I was smouldering for almost 5 years. PBC helped much.Any ideas what else should I do or try?

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Lindsey says 6 years ago

Hi David,

MY father, 63 was recently diagnosed with MM. He has chronic heart failure and his heart is currently only functioning at 45%. The oncologist we are currently working with has recommended we start with radiation, Velcade, Revlimid and Decadron. My concern is how this treatment will effect his heart condition and blood pressure, everything I’ve read about chemo is incredibly hard on the heart. We have worked so hard to get his heart function up from 20% and blood pressure under control. We are very interested in looking for an integrative medicine doctor that will help. We are in the Wyoming Colorado area, and hoping to find someone whom you may recommend whom is close to home.

Thank you for your time and this wonderful site,

Lindsey

Reply
    David Emerson says 6 years ago

    Hi Lindsey-

    I am sorry to learn of both your dad’s MM diagnosis and his heart challenges. You are correct in your thinking. Chemo and radiation can be hard on your dad’s heart.

    Several things. Your dad’s stage at diagnosis and symptoms have a lot to do with how aggressive his therapy should be going forward. Secondly, there are evidence-based supplements that have been shown to reduce the toxicity while increasing the efficacy of RVd. Lastly, depending on your dad’s stage, he many want to consider lower doses of chemotherapy regimens.

    Would you consider talking with a MM specialist (Dr. James Berenson) who is very knowledgeable about lower dosing for MMers? Or, to put it another way, do you know the stage at diagnosis for your dad? Do you know his blood markers such as m-spike, etc.? I have worked with several MMers who have talked to Dr. Berenson. Further, I can research Integrative or Naturopaths. I just want to get a clearer picture of your dad’s status.

    Let me know.

    Thanks

    David Emerson

    Reply
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Reply
Sanford Erickson says 8 years ago

Hello Mr. Emerson,
I was diagnosed with MM via a blood test on May 14 2015 and confirmed by bone marrow biopsy on May 28, 2015.
At that time I told the Hematologist I wouldn’t do his weekly chemo for a year. I wanted to “build up my immune system”. He sent me to an Oncologist closer to home and I started naturopathic treatments with heavy metal detox IVs for a couple months (EDTA ?) I also started Curcumin IV weekly for about two months and reduced to twice a month up till now. I tried a couple anal ozone infusions but want to have the ozone injection into the upper spine and work down to the lower back asap.
From what I can tell, aside from low red blood cell (319)(X10*9/L) and Hemoglobin (103 g/L) and Hematocrit (0.31 L/L) counts
My protein electrophoresis is down to 107 g/L
My Light Chains Kappa Free is down to 256 mg/L on Dec.4, 2015 from 416 on May 28, 2015
My Protein Monoclonal is 45 g/L on Feb 26, 2016 from 56 g/L on Aug 4, 2015.

I also have some good advice from Dr Blaylock in his book “Natural Strategies for Cancer patients”:

I take a good multi vitamin, Omega 3, all the trace minerals including Iron Fumarate (with Lactoferrin to collect and keep the loose iron from
the cancer); 1000 mg. Folic acid; 100mg Vit D; 50mg zinc; 200 mg Selenium.
400I/U Vit. E; 333 mg Calcium with 167 mg Magnesium (could be more I suppose).
100 mg of Ubiquinol CoQ10; 1000mg NAC; 167 mg EMC or Bioactive Quercetin; 500 mg Acetyl-L-Carnitine, 800 mg (ALA) or conjugated Linoleic acid.
600 mg (ALA) or Alpha-Lipoic acid.
All the above are essential antioxidant products that have crucial roles in the fight against cancer.

I would be happy to hear from you regarding my supplemental diet and any other regimes that you know to be helpful. are there new strategies for fighting the Multiple Myeloma?
I know that juicing is great for nutrifying the body but find it time consuming and wasteful (to a degree).

I appreciate your efforts on behalf of cancer victims everywhere.

Thanks again,

S. Erickson

Reply
    David Emerson says 8 years ago

    Hi Sanford-

    I can tell you that your health regimen is anti-MM but the real verification is your blood work trending in the right direction. Please take careful notes as I would like to write about you in PeopleBeatingCancer.org. RE your question about other anti MM strategies, yes. I do not follow any single diet. I eat as little red meat as possible, I don’t consume alcohol, I eat lots of fruits and veggies. Where MM is concerned, I add documented anti-angiogenic foods to my day. I don’t juice but I do make a smoothie each morning.

    I moderately exercise six times weekly. The studies that got me thinking about this therapy cited the importance of daily moderate exercise.
    Lastly, the issue of mind-body. This area is too touchy feely for some. I am not a church going person but I do consider myself to be spiritual. Again, there are a number of studies that cite certain spiritual practices as being mentally healthy.

    Keep me posted on your progress if you have time. Thanks.

    David Emerson

    Reply
      Sanford Erickson says 8 years ago

      David,
      Thank you so much for your speedy reply. I will try to keep track of my changing condition with MM so that I can send updates.
      My last email was pretty full with details of blood work and supplementation.
      I too believe that exercise is very important. My wife is very very active and is often not home during the days and some nights.
      I met her at Square dancing and she goes 3 times a week. I go at least once per week and sometimes twice.
      She plays badminton 2X a week, I try to go once a week.
      We both play table tennis twice a week (minimum).
      We are both involved in two churches doing choir and special music
      including special concerts when we can.
      I do a yoga stretch at least three mornings a week (30 minutes) and follow it up with a far-infrared dry heat sauna in our bedroom for 40 minutes.
      I credit the dry sauna for detoxifying my body more than any other activity as 40 minutes at 38 degrees really sweats the poisons out of me.
      I will write again when I have other information to share like the
      “prolotherapy” (ozone injections at joint and cartilage inflammation sites) that I intend to try, as well as nutrient selections.

      Thanks again for this forum and web site.

      Sincerely, ‘Sandy’ Erickson

      Reply
        David Emerson says 8 years ago

        Sandy-

        Great and thanks. The idea that a person diagnosed with full blown MM (not MGUS or SMM) can control his/her MM through nontoxic therapies will be of great interest to me and all MMers.

        David Emerson

        Reply
Multiple Myeloma Kappa- Integrative, Complementary says 8 years ago

[…] six years. Longer than average. The study in this blog post linked below talks about your question- the cure vs. control debate.  The “solutions for a case like yours” is to to continue what you have been doing to […]

Reply
Cure For Cancer Dichloroacetate | says 8 years ago

[…] Cure vs. Control in Multiple Myeloma … – If multiple myeloma is considered “incurable” by conventional oncology then why is the standard of care an aggressive, highly toxic chemo regimen that … […]

Reply
    David Emerson says 8 years ago

    Dear Waterdamagewallrepair-

    I can’t speak for conventional oncology but my understanding is that aggressive chemotherapy is the standard of care for multiple myeloma because this therapy is oncology’s attempt to stamp out the cancer as aggressively as possible.

    David Emerson

    Reply
Kerry says 8 years ago

My 37yr old daughter was diagnosed with MM 3 wks ago. Chemo started and dialysis every other day due to acute renal failure. One of her concerns is about having sex with her husband. They just did cryoplasty on her T10 and she has a lesion on her femur. Weakened pelvic bones.

Reply
    David Emerson says 8 years ago

    Hi Kerry-

    I am sorry to learn of your daughter’s MM diagnosis. However her youth will help her manage her cancer. I was 34 when I was first diagnosed with MM so I know that youth helps.

    No one has ever asked me about sex after kyphoplasty. The link below takes you to a blog post on the subject. Long story short, the author instructs readers to have sex “when you feel ready.” The author also tells readers to follow their doctor’s instructions.

    I’m sorry I can’t be more help. Let me know if you have any other questions.

    Blog post about sex after back surgery

    David Emerson

    Reply
Di says 8 years ago

Hi David,

My dad was diagnosed with MM 1.5 years ago. He has received chemo and 2 autologous stem cell transplants. Since the 2nd transplant the progression is so minor that it cannot be called progression the Doctor informed us. He had the 2nd transplant 6 months ago. The thing that I’m worried about is he has p53 deletion and this puts him into the high risk category. Please tell me there’s hope for these kinds of patients as well! The most recent MRI showed almost no progression at all since the first one that lead to the diagnosis.
thanks for any info you can offer.

Reply
    David Emerson says 8 years ago

    Hi Di-

    I’ll bet you get that heading a lot…

    I am sorry to read of your dad’s MM diagnosis. However, he has undergone aggressive therapy and his MM has responded. You are correct in worrying about his diagnosis of a p53 gene deletion. This genetic diagnosis affects approximately 3% of newly diagnosed MMers and can result in MM that is more difficult to treat.

    The fact that your dad’s MM did, in fact, respond to aggressive chemo is a clear indication of “hope for these kinds of patients” as you say.

    It is important to understand however, that your dad’s MM will be more difficult. Please click the link below and read the studies talking about curcumin and p53 deletion in MM. Studies indicate that curcumin can activate the p53 gene and increase cytotoxicity. I would also consider antioxidant supplementation with resveritrol, omega 3 fatty acids, frequent, moderate exercise (brisk walk daily) and an anti-angiogenic diet (see the Dr. Bill Li Ted Talk linked below).

    In short I am encouraging you to pursue those anti-MM therapies that go beyond conventional chemotherapy.

    I encourage you to ask me any and all questions you may have regarding your dad’s MM therapies.

    Hang in there-

    David Emerson

    Curcumin and p53 deletion

    Dr. Bill Li Ted Talk-

    Reply
Erica Foondle says 8 years ago

Hell0-

My Dad was diagnosed with MM this week, he doesn’t know too much about it. It was discovered when he had a back injury at work. I am not even sure I know what I am talking about or if these questions make any sense to you. He has it in one rib and a bone in his back. His doctor seemed very optimistic. He is 54, he is scared and so are we. Can you give us some advise? We live in Michigan, he was told the best place for treatment is Ann Arbor MI. What can I do to help him?

Reply
    David Emerson says 8 years ago

    Hi Erica-

    I am sorry to learn of your Dad’s MM diagnosis. However you have come to the right place. Also, your Dad is young where MMers are concerned. The average age of MMers is 65. And it sounds like he was diagnosed relatively early. MM is often not caught, not diagnosed until it has advanced. My guess is that this is one of the reasons why your onc. is optimistic.

    It is normal for your dad to be scared. However, the more you and he learns about his cancer, the more in control he will feel.

    Yes, I can offer those questions and info that your dad needs to learn about in order to make the best decisions for him. I hope you will consider a back and forth series of emails as you and your dad will confront many issues over the next several months.

    Do you know any specifics about your dad’s MM? Such as stage, symptoms (other than bone involvement) and his general health otherwise? An accurate diagnosis is essential for you dad to think about his coming months and years living with MM. I ask only to direct appropriate info to you and your dad.

    Yes, the University of Michigan Cancer Center is an excellent MM center-

    To answer your question about what you can do for him- my answer is to learn about MM, his symptoms and to help him think through decision-making. We will put off discussion of formal caregiving for later.

    By knowing your dad’s stage at diagnosis will you two be able to think about treatment. Like all cancer therapy, you two can treat aggressively or not. The article you came in on, “Cure vs. Control in MM is the most important issue you will deal with from now on.

    Is your dad undergoing any bone repair therapy such as kyphoplasty?

    Before you meet with a hematologist/oncologist at U of M, I can sent you basic info on “induction therapy” meaning possible chemotherapies that your onc. will talk about.

    If you are interested I can provide studies on those integrative therapies to enhance the efficacy of MM chemotherapies while reducing the toxicity of these chemotherapies.

    Further, anti-MM nutrition, lifestyle, etc. all can be discussed in an “evidence-based” format.

    I don’t mean to present too much info. Let me know what you are interested in learning about.

    Lastly, at some point your dad may be interested in talking to a MMer who has lived with MM since his diagnosis in ’94. I have been in complete remission since ’99.

    Hang in there,

    David Emerson
    Survivor, Creator, Director

    Reply
Candy says 8 years ago

Hi David
My mom is 68 and was diagnosed with multiply myeloma 2 years ago at first she was on RVD and that did work and got her into remission but it eventually stopped working. She is growing aggressive tumors all in her abdominal cavity. They are unable to radiate them because of placement and the tissue/placement of them. She has now completed one cycle with pomalist instead of revlamid. The tumors still grew so they want to stop the Pom and switch to possibly Dar?? Not sure if the name but it was fda approved Monday. Any suggestions? Recommendations? We are desperate

Reply
    David Emerson says 8 years ago

    Hi Candy-

    I am sorry to read of your mom’s MM diagnosis. I think the MM therapy that you are considering is called daratumumab. My suggestions are as follows-

    1) the foremost MM oncologist with respect to “controlling” MM is Dr. James Berenson. If you choose to pursue MM chemo cocktails to balance quantity and quality of life, Dr. Berenson is the man to see. His clinic is in California. Dr. Berenson’s website-

    2) if you would like to pursue integrative therapies- antioxidant therapies that research has shown ENHANCE the efficacy of chemo while reducing the toxicity I can link Pubmed studies about supplements such as curcumin, resveritrol, etc.

    The issue here is that the primary focus of these studies is bortizomib aka Velcade. I understand that your mom has already been on Velcade. However these studies report specific supplementation reducing velcade resistance.

    Let me know if you are interested.

    thanks

    David Emerson

    Reply
Rebecca says 9 years ago

I was diagnosed 5.5 yrs ago, I have received Zometa every month. In January 2015, my Doc felt it time to treat as the blood work had changed. I went to Dana Faber for 2nd opinion, he agreed. I am to start RVD as soon as everything is aproved. Am I doing the right thing? This is such a complicated disease, I am close to freaking out here.

Reply
    David Emerson says 9 years ago

    Hi Rebecca-
    I understand that entering active treatment is scary but take a deep breath and try to relax.

    So far you are doing all the right things to help you manage your MM. Dana-Farber is one of the top myeloma organizations.

    To answer your question “Am I doing the right thing? This is such a complicated disease…” yes, and here is my reasoning.

    1) I will assume that your mm at diagnosis 5.5 years ago was discovered at an early stage. Did you have MGUS, SMM? Since your MM was an early stage you chose not to undergo toxic chemo. Zometa as a bisphosphonate or bone strengthening drug is to prevent bone problems.
    2) Your onc has recommended active treatment since I guess your MM has become active. You got a second opinion at an experienced cancer center and they concurred with your onc.
    3) RVD has been recommended by your onc. Revlimid, Velcade, Dex, has shown high rates of response, meaning your chances are excellent (80% or higher I think) of either full, partial or very good remission.

    I have added your post to an article that I believe you and your onc are doing. You are “controlling” your MM rather than trying to cure it. There may come a day when you need more aggressive therapy but that day may be decades away or even never.

    The one therapy I would add for your consideration is supplementation during and post RVD- curcumin, omega 3, green tea extract and resveritrol have all been shown to enhance the efficacy of chemo and reduce it’s toxicity. I will link info below.

    http://www.peoplebeatingcancer.org/curcumin-in-multiple-myeloma/

    http://www.peoplebeatingcancer.org/green-tea-curcumin-as-primary-integrative-synergistic-cancer-therapy/

    http://www.peoplebeatingcancer.org/blogresveritrol-cancer-therapy/

    The more you learn about your health and your cancer the less you will feel like freaking out. Let me know if you have any questions.

    David Emerson
    2) When your doctor recommen

    Reply
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