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Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission

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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What is Multiple Myeloma? Oncology has it backwards…

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Having lived with and studied multiple myeloma since my diagnosis in 2/1994, I have learned that just about every aspect of how conventional oncology defines, researches and treats multiple myeloma is backwards…

What is multiple myeloma?  In my experience the standard-of-care approach for multiple myeloma patients is misleading. Considering only FDA approved MM therapies represents short-term thinking. Newly diagnosed multiple myeloma patients are put at a huge disadvantage if they think short-term.

In my experience, MM is a blood cancer that combines potentially life-threatening symptoms and a series of life-threatening side effects. All at the same time. Let me explain.

The most common MM symptoms are:

The most common side effects/complications caused by MM therapies are:

The most common causes of death for multiple myeloma survivors are:

These common causes of death for MM survivors can also be symptoms of MM as well as side effects caused by MM therapies. For example, a newly diagnosed MM patient may have lytic lesions (bone damage) upon his/her diagnosis. Because MM therapies can cause bone damage as well as the MM itself, the MM patient may struggle with bone damage, lytic lesions, fractures for his/her entire life as a patient/survivor.

MM patients and survivors can spend their entire lives as MM patients battling their cancer, their symptoms and their side effects.

Confusing all of this further is the idea that drug manufactures do not consistently,  accurately distinguish between MM symptoms and side effects of MM therapies.

A new study finds significant variation in how drug side effects are reported, potentially making some drugs seem safer or less safe than they really are.”

Therefore, I think the question

  • “What is multiple myeloma?” must provide the big picture, not short term thinking…
  • “What is multiple myeloma?” must include the term incurable cancer....
  • “What is multiple myeloma?” must include evidence-based integrative and complementary therapies…

To be fair, conventional MM oncology has gotten good at stabilizing newly diagnosed multiple myeloma patients. I agree that it is critical for all newly diagnosed MM patients to become stable.

My point is that conventional MM oncology pushes patients too hard. Conventional MM oncology pushes for “deep responses” when research shows that more chemotherapy leads to more toxicity which leads to more side effects. The greater the number and severity of side effects, the closer the patient is to death.

The solution in my experience is as follows. 

Newly diagnosed MM patients and their oncologists must think long-term. By this I mean that we all must focus on the symptoms caused by MM as well as the side effects caused by MM therapy. Only by balancing the damage caused by both cancer and therapy will the patient be able to achieve the longest quantity of life as well as the quality of life.

The sooner that MM patients wrap their brains around the fact that none of the conventional, FDA approved therapies will cure their MM, the sooner they can begin learning about evidence-based therapies that can:

The Mayo Clinic’s  answer to the question “What is multiple myeloma?” is:

Multiple myeloma is a cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognize and attack germs.

Multiple myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells. Rather than produce helpful antibodies, the cancer cells produce abnormal proteins that can cause complications.

Treatment for multiple myeloma isn’t always necessary for people who aren’t experiencing any signs or symptoms. For people with multiple myeloma who require treatment, a number of treatments are available to help control the disease.”

My disagreement with conventional oncology begins after a person’s MM diagnosis. I disagree with the standard-of-care MM therapy plan, average life expectancy, side effects, etc.- Just about every aspect of MM care beyond a basic definition of MM as well as common MM symptoms.

Nowhere does the Mayo Clinic tell the reader that conventional oncology can’t cure multiple myeloma. This fact becomes central to you when you become relapsed/refractory…

MM Symptoms-    MM Symptoms are what you experience BEFORE a diagnosis of MM-

  • CRABCalcium, Renal failure, Anemia, Bone lesions-
  • Kidney Involvement.  Myeloma cells produce harmful proteins that can cause kidney damage and even failure.
  • Fatigue. As myeloma cells replace normal red and white blood cells, your body has to work harder to absorb oxygen and you tire more easily.
  • Bone Involvement. Myeloma can prevent your body from making new bone cells, causing problems like bone pain, weakened bones, and broken bones.

MM Diagnosis- diagnostic testing- stage I,II, III-

Blood, urine and imaging studies tell MM patients how advanced their MM is. Looking into your blood and bones to determine what problems, what damage, your MM is causing,  is essential. Has MM affected your bones, kidney function, brain, blood, etc.? Your therapy plan, both conventional and non-conventional therapies, depend on what, where, when, why, etc.

MM Chemotherapy-

The two most important things to remember about conventional MM chemotherapy is

  1. the list of FDA approved chemo regimens is long and growing and
  2. MM patients and survivors must undergo chemotherapy from time to time… but all MM survivors relapse. All MM becomes resistant to conventional chemotherapy eventually. Take a less is more approach…

My belief is that conventional oncology relies on chemotherapy far too much to treat MM patients and survivors. This aggressive chemotherapy treatment leads to treating the health problems caused by the toxic therapies. Multiple myeloma leads to symptoms which lead to side effects which lead to death.

To learn about evidence-based, non-toxic, non-conventional therapies designed to balance conventional MM therapies, scroll down the page, post a question or comment and I will reply to you ASAP.

I look forward to hearing from you.

David Emerson

  • MM Survivor
  • MM Coach
  • Director PeopleBeatingCancer

Leave a Comment:

32 comments
Donna London says 7 months ago

Hi David, my friend Floyd just got his port today. He was in the hospital from 1/6 – 1/26 on 1/15 he was diagnosed with full blown MM. His primary Dr. sent him to the emergency room after blood and urine test showed he was very anemic, high calcium and kidneys shutting down. He had one round (four treatments) in the hospital. He came out stable, kidneys working. We had one visit with his new oncologist. Who said Floyd’s case was very serious according to his molecular profile. That is when he put the order in for the port. We see him again this Friday 3/19. We were pretty overwhelmed from the first visit but it sounded like he wanted treatment to be aggressive. He even mentioned that Floyd might be a candidate for a bone marrow transplant. Floyd also has a heart murmur that he has all his life. He was born anemic. He also has been an athlete for most of his life. He is 69 and African American. You have to much information and it is greatly appreciated but also overwhelming. You talk about not having aggressive chemo treatments and going slower. We are not sure what to expect on this next visit. If we are going to talk treatment or start treatment. They did draw blood on the first visit. Do you have any advice for Floyd. He is not eager to start Chemo but has read that chemo is needed to treat MM. Thank you for your time. I am his caregiver, Donna London.

Reply
    David Emerson says 7 months ago

    Hi Donna,

    I am sorry to learn of Floyd’s MM diagnosis. It sounds as though Floyd has three sort of conflicting health challenges- his MM, his kidney function and his heart health. I will reply to you directly via email.

    Hang in there,

    David Emerson

    Reply
Carol Defonso says 7 months ago

I am smouldering for over a year now and agree that less is more but how do you get the mms specialist to go along with that?

Reply
    David Emerson says 7 months ago

    Hi Carol-

    I agree with you that oncologists, specialists or not, can be difficult. A couple of ideas. Always remember that you are the patient. No one can make you do, take, anything. I know of many MM patients who have to leave one oncologist and find another.

    Another way to approach a difficult oncologist is to express your concerns, “doctor, I believe less is more…” And then discuss options. For example, many MM patients who do not want to have an ASCT will harvest their stem cells after induction therapy just in case.

    An example of pre-mm, SMM in your case, will be the issue of “to begin treatment or not.” I know of many with SMM who are told that they should begin chemo “soon.” But your definition of soon may be different than your oncologist’s definition of soon.

    I’ve rarely heard of an oncologist who did not listen to their patient. I would try to explain your wishes, your thinking. Feel free to email me if you and your dr. reach an impasse. We can talk through your options.

    Hang in there,

    David Emerson

    Reply
Julie Avant says 7 months ago

tumor on t4-6 partially removed Nov. 16, 2020…..neurologial numbness from chest down, am walking with a walker…..blood test from 2/15/21…kappa light chain 16.40 mg/L lambda light chain 8.40 mg/L on revlimid, acyclovir, kyprolis (off Vecade as they think causing numbness) I take some vitamins and supplements. they want to do SCT….I do not. only pain in from tumor occasionally, mild…not sure why

Reply
    David Emerson says 7 months ago

    Hi Julie-

    I am sorry to learn of your mm diagnosis though good to see that your kappa and lambda light chains are in normal range (see below). My guess is that surgery to your spine may have caused the neurological issues that you are experiencing.

    If you are asking me whether or not you should have an ASCT, my thinking will be influenced by how you respond to induction therapy. Have you reached complete remission, partial remission, remission, etc?

    In general, I am cautious about toxicity. What was your stage at diagnosis? What CRAB symptoms?

    Normal test results for free light chains are: 3.3 to 19.4 mg/L kappa free light chains. 5.71 to 26.3 mg/L lambda free light chains. 0.26 to 1.65 ratio of kappa/lambda.

    Let me know, hang in there,

    David Emerson

    Reply
Mark Steiger says 11 months ago

Interested

Reply
    David Emerson says 11 months ago

    Hi Mark,

    Could you be more specific? What are you interested in?

    David Emerson

    Reply
Florence D'Orazio says last year

have mm for 5 yrs. currently on ninloral. doing quite well. Biggest problem is constipation and neuropathy in rectal area. Currently seeing alternative dr. who wants me taking tumeric, neuro-mag., 200 mgs. of coq-10 multiple vitamins and b-vitamins all liquid., probiotic, alpha lypoic acid 600 mg.. this is the protocol.

Reply
Frank j Illiano says last year

Hi, I’m a MMpatient diagnosed 2016. I have several lesions throughout my body. What do you recommend to strengthen bones and prevent fractures?

Reply
Judy Coles says last year

Hi David,
My husband was diagnosed June 2019 and January 2020 had a stem cell transplant. He is presently on Revlimid. He is very weak and tired after having a bout with pneumonia. Also losing too much weight because he doesn’t feel like eating. I am looking for supplemental treatment or supplements to help him regain his strength and endurance. Can you direct me to some alternative treatments?

Reply
    David Emerson says last year

    Hi Judy-
    I replied to you directly via your email address. Let me know if you have any questions.
    David Emerson

    Reply
Mary-Anne Madden says last year

I was diagnose with MM early this year. I dont have kidney damage, or anemia but have bone disease. Im currently having plasma infusions to increase my immunity and pamisol infusion to help with bone strength. My doctor thinks I probably will progress to chemo treatment and then stem cell transplant. My second opinion doctor doesnt offer infusions and recommends I go straight to chemo and stem cell transplant. Do you have an opinion on stem cell transplant in the treatment of MM. My main concern is the high doses of chemo that are required prior to the transplant.

Reply
orna agmon says last year

hi,
i am searching for information about revlimid maintenance in mm.

Reply
    David Emerson says last year

    Hi Orna-

    What would you like to know about Revlimid maintenance therapy for MM patients?

    David Emerson

    Reply
Conchis Villafranca says last year

I’m very interested in non-toxic non- conventional therapies. Ty

Reply
    David Emerson says last year

    Hi Conchis,

    I assume that you or a loved one has been diagnosed with MM? If so, what symptoms have you experienced? What stage are you currently? Have you undergone any chemotherapy? Any side effects from therapy?

    I ask because different non-conventional therapies can integrate with different chemo regimens.

    Let me know, thanks.

    David Emerson

    Reply
Marina Omar says last year

Hi David, I find your article so refreshing! My mom was diagnosed with MM in 2017, she went through the whole regime, chemo – velcade, steroids.. and she had tons of side effects! There were times that she wanted to give up.. but the chemo worked for her and she persevered. After a year, being the determined person she is, she asked to stop the treatment.. totally, and thanks to God, she did fine. Her blood works was all good until recently – May 2020. The Dr said her cancer came back, and is affecting her kidneys. She has refused chemo totally this time.. and looked for natural remedy, like vegetables and fruits that are antioxidants and good for her kidneys. I would like to find out more from you how you survived MM, please share with me your journey.

Thanks, MArina.

Reply
Janice Unruh says last year

I was first diagnosed March 2018. Had plasma pheresis ? done and was put on Rev, Dex & velcade. Plus xgeva shots monthly. Numbers came down quickly but felt terrible. Then after a couple months started getting double dosed to bring numbers down more for Sct. Did Not have it done
My choice, as I felt it might kill me due to how bad I felt already-having so many side effects to everything I was taking. Got off everything for a few months and started feeling more normal but numbers started rising quickly (I think because I started eating sugars -Thanksgiving-Christmas and went overboard). Am now on cytoxan with no steroids as they make me hurt . Again , my choice but numbers are slowly rising. Also have trouble with neuropathy in feet and lower legs. Dr wants me to start on a strongIV but I’m so hesitant because I don’t tolerate any of it well. The cytoxan affects me the least of all I’ve been on. By the way I asked and asked the Dr to not double dose me as it was just too much but that was the protocol. I know now that less is more and I’d rather have quality of life than quantity if I have to choose. Could you please send me the supplement List you’ recommend and any helpful ideas you might have for me? Thank You!!!

Reply
    David Emerson says last year

    Hi Janice-

    Are you receiving my emails?

    David Emerson

    Reply
Philip Kersey says last year

What effect does MM have on joint replacement. I have had two surgeries on the same knee. The first was a partial and after three years and a lot of pain I had it redone. They said that the metal piece in my lower leg was loose and had to come out. I had a revision (total knee) in March and I am still having a lot of pain.

Reply
    David Emerson says last year

    Hi Philip- I replied to your question directly via your email- let me know if you have any questions.

    David Emerson

    Reply
sandraedel says last year

This is an excellent article and will be helpful to your readers.

Reply
    David Emerson says last year

    Thanks Jim-

    David

    Reply
Kathryn Guillaum says last year

I DO agree with your synapses..completely.
What I found to be the most common sense; about no matter the amount of therapies/chemo, thefe is no cure and those same treatments wiil not work when relapse happens. So the risk of other conditions or cancers is not worth it ( except to the pocketbooks of practitioners and pharma companies ). Of course the parentheses is just my opinion.
Ok, I apparently have MM, but it makes sense to me that I will live longer with less drugs. I know the myeloma without treatment will or ..may cause problems along the way. Why is it so hard to take charge of our own health..for me anyway?
Thank you for your words.
Research is working on cancer cure but do we have to be guinea pigs?

Ps I must admit that some patients need more treatment, because of obvious issues, but chemo?
Oh boy, I think I will be disagreed with, but I can only go by my case..in reality.

Reply
    David Emerson says last year

    Hi Kathryn-
    Your experience is difficult to discuss online because I think you could have reached remission with a LOT less induction chemotherapy. Then remission…if relapse just a little more chemo…remission…relapse… you get the idea. Non-toxic therapies before, during and after chemo. Less chemo, less toxicity, less damage, less money, better QOL…Yes, most MM patients are diagnosed at stage II or stage III. Therefore they present at diagnosis with more MM, more organ damage. Must worse prognosis. More MM at diagnosis requires more aggressive therapies to reach remission. Unfortunately, that aggressive chemo causes many short, long-term and late stage side effects.

    That is the purpose of the blog post “What is multiple myeloma???”

    Reply
      Kathryn Guillaum says last year

      Multiple….maybe meaning many…..blood types and consequences !?
      Anyway, so far I’m not a whole lot better off, but still better. Looking forward to my first blood labs from not being on Rev. and Zometa. Blood test this coming Monday ( 1st ). I’m hoping either nothing has changed or maybe a little better, or even a little dip because my body has become accustomed to treatment. I have no clue. I’m taking supplements, and supplemental drinks because I don’t eat enough fruits and vegies. The drink is freeze dried vegies and fruits; I add about 8 oz. of water and drink it. It’s hard to tell but I think it’s helping. I do notice the fiber part is helping. 😉 Ingredients are good; no sugar, fillers, just powdered f. and v. I gotta admit though, that I have always wondered about dehydrated and freeze dried products. ….even steamed vegies. The nutrition…..is there still qualities in them? Canned vegies…..to me, seem like they are dead and may act as some fiber..only. Ok, so I am so unqualified; I just wonder a lot.

      Reply
        David Emerson says last year

        Hi Kathryn,

        From a “big picture” standpoint, you have accomplished a great deal thus far. You were diagnosed with MM, you underwent induction therapy, you reached complete remission, you took yourself off chemo and you have improved your lifestyle.

        That is a lot! You know the old saying about “how do you eat an elephant?” One bite at a time…:-).

        Keep me posted. David

        Reply
Janice Whaley says last year

Is it possible to fight MM solely with evidence based, non toxic, non-conventional therapy?

Reply
    David Emerson says last year

    HI Janice-

    I replied to you directly via email.

    David Emerson

    Reply
nanz zekela says last year

curious about the nontoxic route

Reply
    David Emerson says last year

    Hi Nanz-

    Several things. First, can you be more specific? The MM CC program talks about both conventional (toxic) and non-conventional MM therapies. A lot of your therapy choices depend on where you are now, what therapies you’ve already undergone, etc.

    Lastly, if you post your question “curious about the nontoxic route” on Beating Myeloma, everyone will read my comments plus they may write comments of their own. All will benefit.

    Thanks

    David

    Reply
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