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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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Autologous Stem Cell Transplant- NO OVERALL SURVIVAL for Myeloma

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These results were confirmed by a meta-analysis that showed a significant benefit for HDT/ASCT in terms of EFS but no benefit in terms of OS (in myeloma)...”

The standard-of-care (SOC) for newly diagnosed multiple myeloma (MM) patients who are eligible is induction chemotherapy of a triplet called RVd, or VRd (revlimid, velcade, dexamethasone) followed by an Autologous Stem Cell transplant (Hematopoietic stem cell transplant).

In MM most newly diagnosed MM patients are encouraged by their oncologists to have an autologous stem cell transplant (ASCT). Autologous meaning the stem cells come from you. You’d think that the SOC would mean longer average overall survival (OS- length of life) for the MM patient, wouldn’t you?

That’s what I thought when my oncologist told me that I should have an ASCT in early 1995 when my pre-MM became full-blown MM.

The Pubmed article linked and excerpted below is important for two reasons. First, the article lists ten of the most important questions to ask your oncologist before you have an ASCT.

Secondly and most importantly is the fact that ASCT procedures do not increase overall survival (OS) or average length of life. ASCT can increase your event-free survival (EFS) or how long your first remission lasts before relapse.

A newly diagnosed myeloma patient considering an autologous stem cell transplant must consider the advantages of a longer PFS (progression-free survival aka remission) with the increased risk of

  • short,
  • long-term and
  • late stage

side effects that can accompany high-dose chemotherapy aka an autologous stem cell transplant.

  • EFS- event-free survival- time before anything bad happens…
  • PFS- progression-free survival- time before your MM relapses…
  • OS-overall survival- how long you live…

I am both a MM survivor and MM Cancer Coach. If you are considering a stem cell transplant, novel chemotherapies and/or evidence-based therapies proven to be cytotoxic to MM scroll down the page to ask a question or make a comment. Tell me your MM stage and symptoms and tell me what’s on your mind. I will reply ASAP.

thanks,

David Emerson

  • Long-term MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

Treatment of autologous stem cell transplant-eligible multiple myeloma patients: ten questions and answers

“Autologous stem cell transplantation is currently considered the standard of care (SOC) for multiple myeloma in young patients with adequate organ function, based on the results of trials conducted in the era prior to the advent of novel agents.

While these trials demonstrated the superiority of high-dose therapy with stem cell support over conventional chemotherapy, relapse remained an issue for the majority of patients.

With the introduction of the novel agents, a dramatic change in treatment strategies in the transplant setting has taken place. These agents are now incorporated prior to and following the transplant procedure, and have resulted in improvements in outcome.

Importantly, improvements have also been seen in patients with high-risk cytogenetics and renal impairment. In the era of novel agents, the role of transplant itself is being questioned and trials are ongoing to establish whether transplant can be delayed until after relapse in some patients.

The current ongoing studies are aimed towards improving the different steps of the procedure with the aim of further improving efficacy and tolerability. This review addresses a number of questions surrounding the different steps of the transplant procedure and summarizes the available research evidence as a basis for decision making…”

Autologous stem cell transplantation in first remission is associated with better progression-free survival in multiple myeloma.

“Autologous stem cell transplant (ASCT) is standard consolidation therapy in management of multiple myeloma (MM) patients…

Median time from diagnosis to transplant was 7 months (3-79), with majority of patients underwent transplant in first remission, while 17 (12%) patients received transplant beyond first remission.

Eighty-three percent patients obtained CR/VGPR post-ASCT. Transplant-related mortality was 2.1%.

At a median follow up of 54 months, mean overall survival (OS) and progression-free survival (PFS) group were 128.3 months (95% C.I. 111.9-144.7 months) and 73.8 months (95% C.I. 57.7-89.9 months), respectively.

On univariate analysis, OS was adversely affected by renal insufficiency (p = 0.024), while OS was better with CR/VGPR post-ASCT (p < 0.001) and lenalidomide maintenance therapy (p = 0.009). PFS was affected by CR/VGPR pre-ASCT (p = 0.021), CR/VGPR post-ASCT (p < 0.001), and transplant in first remission (p = 0.034). On multivariate analysis, lenalidomide maintenance (versus thalidomide) (p = 0.007) and CR/VGPR response post-ASCT (p = 0.0003) were found to be predictors for better OS and CR/VGPR response at transplant for better PFS (p = 0.038). Transplant in first remission versus beyond first remission showed a trend for better PFS (p = 0.073).

CONCLUSION: Majority of patients obtained CR/VGPR post-ASCT. Longer PFS was seen with patients who were transplanted in first remission.”

 

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54 comments
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Reeca A says last year

I was diagnosed in March 2022 and am going through chemo treatments now. Velcade, darzalex, revlimid. Stage 1. They are recommending asct. I am not sure that is the route I want to go. Any info you have would
Would be appreciated

Reply
    David Emerson says last year

    Hi Reeca-

    I replied to you directly.

    David Emerson

    Reply
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Wendall Chin says last year

Hi David,

I really appreciate all you work and dedication to helping out the MM community!

I was diagnosed SMM mod/high risk in 2019 at age 48 here in Oakland, CA.

At my initial diagnosis of SMM by the Chief of Hematology/Oncology at Kaiser. I was told there “…was nothing I could do…” and “… just live your life and enjoy it”.

I self-advocated to get Revlimid 20/25 mg, then Rev+Dex 5 mg in which my M protein had dropped from 2.8 to 1.3 in 3 months in fall of 2021, then stopped and then I stopped treatment in consultation with my Hematologist/Oncologist. Subsequently, it went back up to 2.5 in less than 2 months, and was diagnosed MM and authorized to do ‘full chemo’ plus ASCT at Stanford Med Center. I am meeting with the Chief of the Dept next to discuss best options for me.

I decided to do something. I have had no previous health problems, no genetic/family history of cancer or other terminal illnesses, and since diagnosis have embraced (1) new diet – staying away from processed sugar and high salt foods, added pro-biotics and pre-biotics (tumeric/curcumin, omega 3 fish oil, multivitamins, beets, mushrooms) — I had been taking mangosteen regularly too, (2) monthly acupuncture/acupressure, positive mindset and deeper spirituality, and gradually upgraded my physical exercise regimen.

I am curious what your thoughts are on moving forward? Appreciated!

Reply
Wendall Chin says last year

Hi David,

I really appreciate all you work and dedication to helping out the MM community!

I was diagnosed SMM mod/high risk in 2019 at age 48 here in Oakland, CA.

At my initial diagnosis of SMM by the Chief of Hematology/Oncology at Kaiser. I was told there “…was nothing I could do…” and “… just live your life and enjoy it”.

I self-advocated to get Revlimid 20/25 mg, then Rev+Dex 5 mg in which my M protein had dropped from 2.8 to 1.3 in 3 months in fall of 2021, then stopped and then I stopped treatment in consultation with my Hematologist/Oncologist. Subsequently, it went back up to 2.5 in less than 2 months, and was diagnosed MM and authorized to do ‘full chemo’ plus ASCT at Stanford Med Center. I am meeting with the Chief of the Dept next to discuss best options for me.

I decided to do something. I have had no previous health problems, no genetic/family history of cancer or other terminal illnesses, and since diagnosis have embraced (1) new diet – staying away from processed sugar and high salt foods, added pro-biotics and pre-biotics (tumeric/curcumin, omega 3 fish oil, multivitamins, beets, mushrooms) — I had been taking mangosteen regularly too, (2) monthly acupuncture/acupressure, positive mindset and deeper spirituality, and gradually upgraded my physical exercise regimen.

I am curious what your thoughts are on moving forward? Appreciated!

Wendall

Reply
Multiple Myeloma Staging- CTC - PeopleBeatingCancer says last year

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Edie Kazmierczak says last year

Hello David,

I am 46 and have been diagnosed with MM in fall of 2020. I don’t have any other health issues and do not take any prescription medication. I’ve had some radiation on my pelvis for plasmacytoma and have been under observation. At the time of diagnosis I’ve had couple of bone marrow biopsies and they came back normal. I do have bone lesions and have experienced some progression with them. My liver, kidneys, are functioning well. Overall all my blood work is normal except for the increasing kappa light chains and their ratio. I have been a raw vegan since fall of 2021 and juicing a lot. I’ve done some detoxing, started using infrared blanket at home and started on many supplements and herbal teas. My light chains dropped last month however went right back up this month. My oncologist is strongly suggesting 4 months of Cyclophosphamide, Bortezomib, and Dexamethason and then ASCT. I’ve been taking Zometa on quarterly basis since my diagnosis.

I’ve talked and seen posts from people who managed to go into remission naturally.
I’m really not sure about my next step in treatment and would love to hear from you as you’re so knowledgeable and have been dealing with this illness for so many years. Any information you’re willing to share would be greatly appreciated.

Thank you in advance.

Reply
    David Emerson says last year

    Hi Edie-

    I am sorry to learn of your MM diagnosis. Several issues to set the stage for your therapy plan going forward.

    Based on your explanation, you are early stage MM. I think it is possible that you were pre-MM (either MGUS or SMM) at diagnosis. I mention this for several reasons.

    The first reason is that, according to research, 95% of all newly diagnosed MM patients are stage 2 or 3. The average age of MM patients is 69. I am pointing this out to you to illustrate to you that you are an outlier. You are much younger than average and you are early stage MM, you have much less disease.

    The induction chemo combination of cytoxan (cyclophosphamide), velcade (bortezomib) and dex followed by an ASCT is the “standard-f-care” for all newly diagnosed MM patients. Board Certified oncology is obligated to offer/prescribe this therapy plan.

    In my experience, the SOC for your stage and age is much too much toxicity. Please read the “cure vs. control” essay linked below. Dr. Vincent Rajkumar, author of the essay, is a MM specialist at the Mayo Clinic. He is a very knowledgeable, experienced MM onc.

    Your challenge, as I see it, is to manage your MM for decades. I use the word “decades” because the current five-year survival for newly diagnosed MM patients is about 50% and the average life expectancy is 5-7 years.

    Your age will undoubtedly enhance your prognosis though my point is that conventional MM therapies are limited, meaning these therapies focus on stabilizing advanced MM (stage 2 or 3). Your MM is not advanced.

    Therapy plan going forward? I ask this question because now that I have pointed out your challenges, I have to offer possible solutions…

    Being young, healthy and pursuing a healthy lifestyle you are way, way ahead of the game. Conventional oncology and the FDA don’t study the non-conventional therapies that you mention. however, in my experience, these lifestyle therapies will enable you to balance the toxicity you may need to manage your MM.

    Your main challenge to managing your MM in the coming years will be your bone involvement aka bone lesions. MM exhibits itself differently in different survivors. I say this because you mention that your diagnostic testing is normal- BMB, kidney, liver. An above normal range kappa light chain and K/L ratio is a concern eventually. I say eventually because it depends on how much above the normal range your numbers are.

    Regular diagnostic testing, especially imaging (PET, CT, MRI, etc.) will enable you to keep an eye on your bone involvement. Your lesions may grow more slowly or more quickly. In my experience your non-conventional lifestyle combined with only enough chemo and radiation to manage your MM and bone involvement is the therapy plan that will offer you the best length and quality of life.

    I encourage you to work with an MM specialist if you have not already done so. Also, I encourage you to add anti-angiogenic foods to your diet. Please watch the Ted Talk given by Dr. Bill Li in the nutrition guide.

    I will add the MM CC nutrition, questions and cannabis guides below. This turned into a long reply. Let me know if you have any questions.

    Are you experiencing any symptoms such as nerve pain or bone pain?

    Hang in there,

    David Emerson

    Reply
Einav Strammer says 3 years ago

Hello David,
First of all thank you for your important mission in life which I’m sure helps so many MM survivors.

I’m 43 years old (tomorrow…:-)) and I was diagnosed in Dec 2020 with a smoldering Myeloma (Igg lambda which now with the treatments in range, fortunately with no lesions on my bones as the Pet-CT showed, so it is restricted to the marrow bone, but a high risk one with translocation of t14;16 and d13.

Therefore, the recommendation was to start VRD + Daratumumab (which I’m undergoing now) and later on ASCT. I understood that even though in the coming future CAR-T might replace the ASCT, in high risk patients in order to get deep remission it is highly recommended to have ASCT.
Moreover, the way I see it, “the game” here is to buy time, as longer as I can in remission, so that hopefully when it will relapse there will be new and better treatments more “Hi-Teck” ones immunology and no chemo at all. I would really like to hear what you think and what would you do. Thanks in advance!

Reply
    David Emerson says 3 years ago

    Hi Einav- I am going to reply to your email directly. Thanks.

    David Emerson

    Reply
Brad schott says 3 years ago

I was diagnosed with MM and I have four cycles of the drugs you mentioned just halfway through the second cycle. Wondering if I need to do the stem cell transplant. I am 54 only thing weird was my IGa protein numbers which are now in the normal range. Had a few broken ribs over the summer and some pretty painful back spasms but most are getting better now. Doing the Velcade Revlimid treatment I like reading your story so positive.

Reply
    David Emerson says 3 years ago

    Hi Brad-

    I replied to you via your email address.

    David Emerson

    Reply
dale peever says 3 years ago

hi David was diagnosed in november 2019. had a stem cell transplant autologous.. in may 2020.. doing real well and bloodwork has been great.. im starting a rivlimid treatment soon aswell.

Reply
    David Emerson says 3 years ago

    Sounds good Dale- Let me know if PBC can do anything for you.

    David Emerson

    Reply
Multiple Myeloma Treatments- Stem Cell Transplant? - PeopleBeatingCancer says 3 years ago

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Cindy says 3 years ago

Hi David
I am at the stage where they want to to the Stem Cell Transplant. I went and got a second opinion and the doctors don’t agree at all – now I am feeling more confused than ever. I was diagnosed in January with Stage III MM – 90% in the marrow and a p17 deletion. I just finished four cycles of RVD and my numbers have almost gone back to normal. I have changed my diet to plant based and to me it seems like this has catapulted my health back to normal. I have no symptoms other than my knee started to hurt (I do have a torn meniscus) it was at this appointment that they noticed my protein was high … the rest was confirmed from there.

Reply
    David Emerson says 3 years ago

    Hi Cindy-

    I will reply to your post via an email to you directly.

    David Emerson

    Reply
Eva Berriman says 3 years ago

So the question becomes for me the individual assessment of the trade off between:
1) ASCT with possible longer progression-free survival – which hopefully means less damage to the body from the disease progression vs
2) no ASCT with the risk of earlier disease progression, but less damage to the body from the toxic treatment.

Did I understand that somewhat correctly?

Reply
    David Emerson says 3 years ago

    Hi Eva- Great question. Long reply. I am going to reply to this and email you directly with my reply. Thanks.

    David Emerson

    Reply
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Kathryn Guillaum says 5 years ago

Redundant but here goes. I was diagnosed a few days ago with MM.I have no noticeable symptoms yet. No bone pain (usual back pain from 2011 accident). I am not losing weight either. I just turned 70 in Aug.
Oct. 10th, I have a consult. and X-ray and was supposed to start first I.V and pills. However I need to get a tooth pulled,so no treatment till that is done. So I have time to research. Please forgive me, but I worry that you are selling false hope. I don’t have time or money for that. I have to find something, so I’m betting my life…so to speak. Looking forward to your webinar, tomorrow evening. More power to…..your health, young man!

Reply
    David Emerson says 5 years ago

    Hi Kathryn-

    I will email you again based on this info- D

    Reply
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Carol Keise says 5 years ago

It seems to me that stem cell transplants does extent life. But is very risky. We rarely here about the instances where transplants failed.

Reply
    David Emerson says 5 years ago

    Hi Carol,

    The issue is what is meant by “extend life.” Yes, an ASCT does extend life compared to the newly diagnosed MM doing no therapy at all. However, numerous studies show that newly diagnosed MMers do NOT live longer comparing ASCT to novel therapies whether they are doublets or triplets. What has been shown by research, it that ASCT does result in longer “progression-free survival” aka PFS. Meaning the MMer will, on average, enjoy a longer remission. But length of life (OS) is the same compared to chemotherapy.

    That might be more info that you wanted but I think MMers need to understand their options.

    thanks,

    David Emerson

    Reply
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