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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Can Multiple Myeloma go into Remission?

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Can Multiple Myeloma go into remission? If so, how long will a person’s MM stay in remission? Is there any way to lengthen or deepen remission?

Hi David- Are you now in remission? I was diagnosed with multiple myeloma in 2016. Had an autologous stem cell transplant in 2017 but it did not take.
I’ve been on chemotherapy ever since, 4 different ones, finally settled on Daratumumab which I get once a month.
My numbers not up and not down just holding my own. After 25 years is this the best I can hope for? Where are you in this process? John


 Hi John, 
The replies to your questions are a bit complicated. I will answer as best I can. 
Yes, I am in complete remission. I have been since I completed ANP therapy in early 1999. 
1) “ I was diagnosed in 2016. Had stem cell transplant in 2017 but it did not take.”
Conventional oncology doesn’t discuss when ASCT is not successful though it happens about 20% of the time. I relapsed 10 months after my ASCT. 
2) “Been on chemo ever since, 4 different ones, finally settled on Daratumumab which I get once a month. Numbers not up and not down just holding my own.”
The good news for relapsed/refractory MM survivors is that there is a long and growing list of FDA approved therapies for MM. There have been about a dozen therapies approved by the FDA for MM over the past 10-15 years. MM diagnostic testing as greatly improved as well. 
  • Immunomodulatory drugs-Thalidomide, Lenalidomide (Revlimid), and pomalidomide (Pomalyst)
  • Proteasome inhibitors-Bortezomib (Velcade), Carfilzomib (Kyprolis), and Ixazomib (Ninlaro)
  • Monoclonal antibodies- Elotuzumab (Empliciti) and daratumumab (Darzalex)
  • Immunotherapy- Isatuximab (Sarclisa)
  • Nuclear export inhibitors. Selinexor (Xpovio) 
  • Glucocorticoid- Dexamethason, Prednisone
3) “After 25 years is this the best I can hope for? Where are you in this process?”
The bad news for RR/MM survivors is that multiple myeloma eventually becomes resistant to all chemotherapy regimens. This resistance is called “multi-drug resistance” or MDR.
RR/MM survivors and their oncologists try one regimen after another trying to achieve as deep and as long a remission as possible. 
My “process” as you call it, is different from how conventional oncology treats MM. For two main reasons. First, I tried conventional therapies- surgery, lots of radiation, induction chemotherapy, an ASCT, more radiation and finally “there is nothing more we can do for you.”
So I underwent an experimental, non-FDA approved therapy and it put me into complete remission. Since then, I take/pursue non-toxic anti-MM therapies such as:
  • nutrition,
  • supplementation,
  • complementary therapies, etc.
All to say, I think conventional MM therapies are needed to stabilize a person’s MM in the beginning. However, I think MM patients must combine chemo with non-conventional therapies to live beyond the 5-7 averages that conventional MM therapies provide. 
To put is bluntly, I don’t think conventional MM oncology can offer a long-term solution. 
I think the long-term solution is for MM patients to stabilize their MM and then integrate toxic therapies with anti-mm nutrition, supplements, integrative therapies, complimentary therapies, etc. 
Hang in there- let me know if you have any questions-
David Emerson
MM survivor
MM Cancer Coach
Director PeopleBeatingCancer

Recommended Reading:


Multiple Myeloma: Available Therapies and Causes of Drug Resistance

“The introduction of new drugs and combined regimens improved the overall survival of MM patients in recent years. However, drug resistance is still a concern to the majority of patients and particularly for the ones that relapsed or became refractory to those novel therapies.

Understanding the different mechanisms of drug resistance will allow the identification of new targets and the development of novel drugs to counteract this clinical problem. This review highlighted the major novel available therapeutics for MM and causes of drug resistance.

Of note, MM tumor cells may acquire simultaneously various alterations responsible for drug resistance, being particularly relevant when occurring in CSCs. Most importantly, the alterations in MM cells do not justify all cases of drug resistance, and attention needs to be paid to alterations in the tumor microenvironment and to intercellular communication.

It is imperative to be able to classify MM patients and to define at an early stage of the disease appropriate personalized therapeutic strategies. Thus, it will be necessary to fully understand the molecular mechanisms involved in drug resistance for different drugs, in order to identify new molecular targets and therapeutic tools to overcome this problem and prolong MM patients’ survival.”

Multiple Myeloma Remission

“Multiple Myeloma Remission and Relapse – ICD 10 Codes

What does it mean to be in remission with multiple myeloma? Let’s first talk about the basics: being in remission with myeloma is not the same as being cured of myeloma. Remission can be in part or in full. You may still have detectable myeloma but have fewer cancer cells present. Every patient wonders how long that remission will last, but there is no simple formula and every patient is different. It can depend on the type of myeloma treatment you receive, the genetics of your myeloma and other health factors.

It is common for myeloma to return after an initial remission. This is called relapsed multiple myeloma. The goal of today’s treatment is to extend the length and depth of remissions until a cure can be found.

There are various levels of response patients can have to treatment:

Stable Disease (SD)

Stable Disease is when a patient has had some response to treatment but less than 50% reduction in monoclonal protein levels. Their disease is not improving or getting worse.

Partial Response (PR)

Partial Response is when a patient has had over a 50% reduction in their blood monoclonal protein and a reduction of M-protein in the urine of over 90%. If a patient had a plasmacytoma (a single lesion), a partial response would mean over a 50% reduction in tumor size.

Very Good Partial Response (VGPR)

A Very Good Partial Response means that the monoclonal protein levels can be detected by the IFE (immunofixation test), but not by the electrophoresis test in the blood and urine. It also means that the M-protein has been reduced in the blood by over 90%.

Complete Response

A Complete Response means that there is no detectable monoclonal protein in the body.

Stringent Complete Response

Stringent Complete Response means that a patient has achieved a Complete Response and they also have a normal free light chain ratio and have no clonal cells in the bone marrow as measured by immunohistochemistry or immunoflourescence.

Minimal Residual Disease Negative

More sensitive testing is available that can detect lower levels of disease either by flow cytometry or by Next Generation Sequencing testing. If a patient is MRD negative, it means they have achieved a Stringent Complete Response and no myeloma cells can be detected in a sample of a million. This is a bone marrow biopsy test.

Leave a Comment:

4 comments
Dan Winchester says a few months ago

David,

I was told by my neurologist this week, that my comprehensive metabolic panels were abnormal, for example, 663 for free kappa Lt chains, range is 3.3-19.4, H very high, and i have stage 3 Neurapathy, now he believes i may have Multiple Myeloma, which is the ‘root cause’ of the Neurapathy. Thus, i have been referred to the cancer center oncologist for further testing, including a bone marrowbiopsy! omg! I dont know what questions to ask the oncologist and treatment appears to be chemo radiaton and stem cell transplants? What about nonconventional treatment, i dont know if my neurapathy body can handle chemo, chemo inflames Neurapathy?????????????? please advise? Thank you

Reply
    David Emerson says a few months ago

    Hi Dan-

    I understand that abnormal test results can cause anxiety. The challenge is that a thorough diagnosis of MM, if that’s what you have, requires a complete diagnostic work-up including a CBC, metabolic panel and a bone marrow biopsy.

    It is important to remember that the FDA approved standard-of-care therapy plan of induction therapy, an ASCT and maintenance therapy, is the therapy plan that is recommended but NOT required. Meaning, your goals, diagnosis, etc. dictate your therapy plan. You are the patient, you are in charge.

    Regarding questions to ask your oncologist, at this point, it is better to listen to him/her, to understand what they are recommending at this point. Once you understand what your oncologist is recommending, ask two simple questions-

    1) how many MM patients have you treated in the past month? Your goal is to figure out if the onc. is a MM specialist.
    2) What stage of MM am I? Like all cancers, the patient’s stage is important and directly relates to the patients therapy plan. If your onc. says that staging is not important, it means that the onc. takes a one size fits all approach to treatment.

    Yes, there are many evidence-based non-conventional therapies shown to both combat MM as well as support your immune system including nutrition, supplementation and lifestyle therapies.

    These therapies have not been evaluated by the FDA and therefore are not FDA approved.

    A small dose of chemo, for example, can stabilitze your MM and reduce your neuropathy. Keep in mind that without knowing your diagnosis, it is premature to discuss your future.

    I understand that waiting for information can be agony. My adivise is to take a deep breath and take things one step at a time. Get all of the Recommended tests done and email me again for more recommendations.

    MM, if that’s what you have, is very treatable. Hang in there and keep in touch.

    Good luck,

    David Emerson

    Reply
Rob Wright says a few months ago

I have been a mm patient for 9 years. Many ups and downs in this period. Last week I had three transfusions as my haemoglobin levels had dropped to 34. After the tfs my level had gone up to 88. Naturally I felt quite good. Presently I’m on lenalide and have been for 6 months. Prior I was on revlimid for 4 or more years. A natural remedy I also take are spricot kernels about 35 a day taken in small doses throughout the day. My specialist hase just reduced my dose to 10mg. Initially taking 20mg then down to 10mg.
In your article you talk about nutrition. Can you enlighten me with more info? Also I wish to embark on fenben.
I’m losing confidence in the pharmaceutical remedy but I inderstand fenben increases efficacy of the chemo.
I thank you for your detailed review of your personal experience.
There is so little written about mm
Thank you.
Rob.

Reply
    David Emerson says a few months ago

    Hi Rob-

    It sounds as through you have done as well as can be expected. It is expected for conventional theories to become ineffective after a time. I will email the MM CC nutrition guide to you.

    Good luck,

    David Emerson

    Reply
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