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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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Multiple Myeloma Response-CR or VGPR- NO Difference

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Complete Response (CR) or Very Good Partial Response (VGPR) In Newly Diagnosed Multiple Myeloma Makes NO Difference in Overall Survival. None. 

The word “response” for newly diagnosed multiple myeloma (MM) patients simply means how you/your MM reacts when you undergo your first line of cytotoxic therapy. My understanding is that, on average, approximately 75% of MM patients “respond” to induction chemotherapy.

The levels of “response” are below.

It would be logical to think that a CR or VGPR status translated into a longer overall survival. I know I thought this when I had my autologous stem cell transplant. According to the two studies linked and excerpted below, I was wrong to think this.

 

Please don’t misunderstand me. Yes, a CR is a positive indicator for a longer overall survival. But the opposite is not true. Not achieving a CR does not mean that you will not live a long OS.

I had my autologous stem cell transplant in 12/95, relapsed about a year later and here I am writing this blog post 23 plus years later.

Further, yes, all newly diagnosed MM patients want to reach CR from their induction chemotherapy. And if you do reach CR or VGPR, that’s great. However, if you have NOT reached CR or VGPR from induction therapy, don’t panic. You have NOT failed your induction therapy.

Or as Dr. Rajkumar (MM specialist) put it:

“It is one thing to say that achievement of CR is a prognostic marker, but quite another to take that to mean we need to treat patients until they reach CR.”

Please, please, please try to understand what Dr. Rajkumar is saying above. Countless MM patients undergo more and more toxic chemotherapy trying desperately trying to reach CR. Two things are happening when the patient does this.

  1. Your body, your immune system is being damaged the more toxicity you undergo. The more damage done to your body, the more short, long-term and late stage side effects you will endure.
  2. You may or may not reach CR by undergoing more chemotherapy. And even if you do reach CR, there is no study, no research that says that you will reach, on average, a longer overall survival aka length of life.

Stringent complete response (sCR)- sCR is the highest classification of treatment response and is better than complete response (CR), very good partial response (VGPR), partial response (PR), or stable disease (SD). sCR is defined as the CR criteria as well as a normal free light chain ratio and the absence of clonal cells in the bone marrow measured by immunohistochemistry or immunofluorescence.

Complete response (CR)- A treatment response category developed by the International Myeloma Working Group (IMWG). CR indicates no detectable evidence of tumor in the body.

Very good partial response (VGPR)- VGPR is a less favorable response to treatment than stringent complete response (sCR) or complete response (CR) but is better than partial response (PR) or stable disease (SD). VGPR is defined as monoclonal protein levels detectable by immunofixation but not electrophoresis in serum and urine. Additionally, VGPR is defined by a ≥90% reduction in serum monoclonal protein and a monoclonal protein level in urine of <100 mg/24 h.

Partial response (PR)-PR is a less favorable response to treatment than stringent complete response (sCR), complete response (CR), or very good partial response (VGPR) but is better than stable disease (SD). PR is defined as having a ≥50% reduction in serum monoclonal protein and a reduction in 24-hour urine monoclonal protein of ≥90% or to <200 mg/24 h. Additionally, a ≥50% reduction in the size of soft tissue plasmacytomas is required if the patient had plasmacytoma at baseline.

Stable disease (SD)- A disease state where a patient has some response to treatment but a <50% reduction in monoclonal protein levels, and the disease state is neither improving nor getting worse. The International Myeloma Working Group (IMWG) has defined SD as not meeting any of the criteria for the other response categories and recommends against using SD as a measure of treatment efficacy.

25 plus years of living with MM and coaching MM patients has taught me that the key to living a long overall survival with MM is to use the best of both conventional FDA approved MM therapies and combine them with the best of non-conventional, evidence-based MM therapies to manage your MM. It is not about CR, VGPR or MDR.

It is about the quality of life (QOL) and overall survival (OS).

Have you been diagnosed with multiple myeloma? If so, what stage? What symptoms are you experiencing? Bone pain? Anemia? Kidney damage?

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

Thank you,

David Emerson

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

Recommended Reading:


No Association Between Response Rates and Survival in Newly Diagnosed Multiple Myeloma

“There was no association between conventional response outcomes, such as CR or VGPR, and survival in patients with newly diagnosed multiple myeloma, according to the results of a meta-regression analysis published recently in the European Journal of Hematology…

“We explored the relationship between response to initial treatment and survival in patients with newly diagnosed multiple myeloma, based on data from 63 randomized clinical trials”…

Meta-regression analyses failed to demonstrate any association between CR or VGPR with either overall survival or progression-free survival both in patients receiving autologous stem cell transplant [ASCT] and in non-ASCT patients.”

Should Myeloma Patients Panic If They Do Not Achieve A Complete Response?

“Of course, the cause of my worry is not that patients have not achieved the magical CR or minimal residual disease-negative status, but at how mis­in­ter­pre­ta­tion of data can lead to needless concern, unnecessary chemo­ther­a­py increased side effects and cost of care, and even harm

In newly diagnosed patients treated with induction, stem cell transplantation, and Revlimid maintenance therapy, the proportion of patients who get to a complete response is approximately 30 percent. Does this mean that 70 percent of myeloma patients have “failed”?

Even with more expensive triplet induction regimens such as Revlimid, Velcade, and dexamethasone(Decadron) (abbreviated as RVD), only 40 percent of newly diagnosed myeloma patients achieve complete response. An aggressive seven-drug induction regimen followed by two back-to-back transplants, and three years of maintenance used in the “Total Therapy 3” regimen results in a complete response rate of 55 percent.

Should one-half of newly diagnosed myeloma patients panic that they have not reached a complete response? That would be over 10,000 worried patients each year in the United States alone.  The short answer is no; absolutely not.

Multiple myeloma is a remarkably heterogeneous disease; the outcomes vary dramatically depending on the patient’s chromosomal abnormalities. The type of myeloma one patient has may be completely different than the myeloma another patient has; it may not even be the same disease…”

 

Leave a Comment:

34 comments
Luanne Bigbear says 9 months ago

Thanks for this fabulous post! I’m in a FB group with you as well. I just want to thank you for sharing your wisdom and experience freely. As a person who is 53 and thankfully in the status of sCR, I hope and intend to follow in your footsteps as a statistical anomaly. But, I couldn’t do it without the crowdsourced knowledge of the community. Thanks for your support David!

Reply
    David Emerson says 9 months ago

    Hi Luanne-

    Yes, I enjoy your posts. The young MM survivor needs to understand issues like this on. Well done on reaching sCR but those patients who don’t reach MRD or sCR or even CR shouldn’t aggressively treat themselves as a result. In my opinion anyway.

    My dirty little secret is the I find MM to be interesting. I look forward to exchanging tips and info with you Luanne for decades to come.

    thanks,

    David

    Reply
Myeloma-PFS- Progression-Free Survival vs. OS-Overall Survival - PeopleBeatingCancer says 11 months ago

[…] Multiple Myeloma Response-CR or VGPR- NO Difference […]

Reply
Imran Karmali says last year

Hi,
My mother has been diognised with MM in August 2020.
After 4 cycles of VRD her M-Spike was 2.2 where she then proceeded for autologous stem cell transplant.
30 days after transplants her m-spike is 1.5 and the Dr says she has VGPR.
She has just been told to do another 1 or 2 cycle of VRD.
After which to go on Maintance with 10 mg of revlimed.
What would your advise be post cycles ?

Reply
    David Emerson says last year

    Hi Imran,

    I am sorry to read of your mom’s MM diagnosis. After 4 cycles of VRD and an autologous stem cell transplant your mom has had a lot of chemo, a lot of toxicity for her body to manage.

    It is you/your mom’s call of course but I can’t think of a study that shows that more chemotherapy (1 or 2 rounds of VRD) will increase length of life (overall survival). More chemo will definitely increase the risk of serious side effects and reduce your mom’s quality of life however.

    In addition, maintenance Revlimid has been shown to increase the first remission but NOT length of life.

    Consider evidence-based, non-toxic nutrition, supplementation and integrative therapies.

    Let me know if you have any other questions.

    David Emerson

    Reply
Multiple Myeloma Diagnosis- Too Old for Stem Cell Transplant? - PeopleBeatingCancer says last year

[…] Multiple Myeloma Response-CR or VGPR- NO Difference […]

Reply
Will the Multiple Myeloma Cancer Coaching Program Help Me? - PeopleBeatingCancer says last year

[…] Multiple Myeloma Response-CR or VGPR- NO Difference […]

Reply
David Wilson says last year

Hi, I am 45 and have had my first transplant and remission for two years, as of last week it is back.
I want to change my diet + i have started taking large doses of curcumin, DCA, CBD and Beta Glucan. If I sign up for the coaching will I get help with what to eat. I just need help!!

Reply
    David Emerson says last year

    Hi Dave-

    I replied to this via you email address. Hang in there-

    David Emerson

    Reply
Multiple Myeloma Treatment- Poor Response to Chemotherapy? - PeopleBeatingCancer says a couple of years ago

[…] Multiple Myeloma Response-CR or VGPR- NO Difference […]

Reply
Hemorrhagic Cystitis aka Irritable, Urgent, Frequent, Painful Bladder- PeopleBeatingCancer says a couple of years ago

[…] Underreported in Autologous Stem Cell Transplant CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma To Transplant or Not To Transplant In Multiple […]

Reply
Myeloma Cancer Coaching- VGPR From Induction- What Next? - PeopleBeatingCancer says a couple of years ago

[…] CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]

Reply
Mushrooms- Non-toxic, Complementary Multiple Myeloma Therapy - PeopleBeatingCancer says 3 years ago

[…] CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]

Reply
P S Rana says 3 years ago

I am 63 years old Indian men diagnosis Multiple Myeloma (Plasmacytoma D9 vertebrae, 15 days radiation in same area, in PET scan rest of body parts are normal) Oct 2018 with M protein 4.84 , Gamma 5.66, Beta 2 Microglublin 3814, Kappa light chain 52.8 Total protein 11.3 after 6 months maintenance therapy ( Boretezomob 2 mg once in a week)

after 6 months treatment new results are M protein 3.05 , Kappda & Lamda light chain is with in range (15.7 & 23.6) Beta 2 Microglublin is 3103, Gamma 3.35, Hbg 12.5
current medicine: Thalidomide daily and monthly 1 injection Idromet.
I need your suggestion/openion for the ongoing treatment and response of the treatment
Thanks.

Reply
    David Emerson says 3 years ago

    Hi P.S.-
    Your MM experience and questions are interesting and require a bit more research and thinking than usual. I will reply to your post tomorrow if that’s okay with you.

    Hang in there,

    David Emerson

    Reply
Myeloma Cancer Coaching- Not Very Good Remission Post ASCT- PeopleBeatingCancer says 3 years ago

[…] Free light Chains and Myeloma Remission/Relapse? Multiple Myeloma Information CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]

Reply
INeligible ASCT Myeloma Patients-Longer PFS but Lower QOL - PeopleBeatingCancer says 3 years ago

[…] CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]

Reply
ASCT Now or Later? Makes No Difference in Multiple Myeloma - PeopleBeatingCancer says 3 years ago

[…] Myeloma-“Partial Remission Post Induction Therapy- next steps? CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma Wobenzym N- Integrative Multiple Myeloma […]

Reply
Sudip says 3 years ago

I have mugs while looking for FUO , nothing in ct scan for ribs until pelvic, only thing I have is being aneamic,10.6 and FUO which is being managed by 300mg nsaid in 24 hour period. Referred to hematologist and running series of blood work prior BMB to be sure if MM, specifically looking for b2m, lambda and kappa, m spike in 24 hour urine. Now what’s the prediction as 2 weeks waiting for results but not yet in. Say for worst case scenario what is the outlook with present day medication. I am of indian origin, 48 years and presently working in Cyprus. Does turmeric help in this case?

Reply
    David Emerson says 3 years ago

    Hi Sudip-

    If I understand your question, you are asking me if are not sure of your diagnosis (at least for two more weeks) will it help you to begin curcumin supplementation? Yes- curcumin is a non-toxic, anti-oxidant, anti-inflammatory nutritional supplement. The issue you face is getting the most bioavailable formula. Plain curcumin is difficult for the body to absorb.

    I will link a post below- be sure to scroll to the bottom of the post to read about bioavailable curcumin formulas. Let me know the results of your results.

    Please consider either Pre-Myeloma or Multiple Myeloma cancer coaching.

    David Emerson

    https://peoplebeatingcancer.org/myeloma-cancer-coaching-research-of-long-term-stabilization-with-curcumin/

    Reply
      Sudip says 3 years ago

      Hi David, first of all thanks for your response. it is at the moment confirmed as having SMM, m protein 1.5 mg/dl, kappa lambda ratio 68, bone marrow aspirate 38%, ldh normal, all other marker for renal, bone is normal. Beta2microglobulin is 2.48. Now in this stage do we have any conventional therapy to keep it this way or follow the wait and watch program.

      Reply
        David Emerson says 3 years ago

        Hi Sudip-

        Two different replies to your question “Now in this stage do we have any conventional therapy to keep it this way or follow the wait and watch program.”

        The first reply is that conventional oncology considers both MGUS and SMM to be “blood disorders” or pre-MM. Not cancer. Therefore there are no drugs developed for these diagnoses.

        The second reply is that there are evidence-based, non-conventiona therapies shown to reduce the risk of pre-MM advancing to full blown MM. Margaret of a blog called “Margaret’s Corner” has been living with SMM for, I think, 15 years now. On her site Margaret writes a lot about curcumin. There have been thousands of studies of curcumin and cancer. The problem for patients is that curcumin is not FDA approved and therefore is not a real or legit. therapy.

        If you begin MM chemotherapy, you will start down the road towards MDR or multi-drug resistance. All MMers eventually develop resistance to all FDA approved chemotherapy regimens.

        Please consider the pre-MM guides. https://peoplebeatingcancer.org/product-category/pre-myeloma/

        Let me know if you have any questions.

        David Emerson

        Reply
Diet for Multiple Myeloma says 4 years ago

[…] CR or VGPR Makes NO Difference in Newly Diagnosed Multiple Myeloma […]

Reply
cheryl ridgway says 4 years ago

hello, my son was diagnosed last june with multiple myeloma, had tumor at top of spine, and couple other lesions, had radiation and 4 rounds Chemo, then stem cell transplant in kingston ontario in january of this yr, overall he,s been doingwell, but was hoping to hear the word “remission” after his 100 post transplant, dr, does not use that term with this disease, they use” very good partial response” , although bloodwork all good at this stage, he would still like to hear that word, he is 49, with 2 young teen children, and has been very positive throughout this whole ordeal, do you have any positive words with regard to the VGPR results, dr talked about, all bloodwork, kidneys, liver, etcall good at this point, want to help support him with positive attitude,

Reply
    David Emerson says 4 years ago

    Hi Cheryl,

    I am sorry to learn of your son’s MM diagnosis. However, as you read in the blog post you came in on, overall survival (OS) after ASCT does not depend on response. Your son can acheive a CR or a VGPR and still live a long OS.

    Further, his age is young for MM patients but youth is a positive prognostic indicator (I was 34 when I was diagnosed). His relative youth means that he can withstand the rigors of chemotherapy better than the average 67 year old MMer.

    I encourage your son to consider evidence-based non-conventional therapies such as anti-MM nutrition, nutritional supplementation, other therapies. Canada has created an exceptional medical marijuana system (much better than the US…). CBD oil has shown the ability to be both anti-MM by itself and well as synergistic to chemotherapies such as Velcade.

    MM Cancer Coaching-

    David Emerson

    Reply
Kim Orr says 4 years ago

I was diagnosed December 2017. I’m on my 5th cycle of treatment and start my stem cell transplant on 16th April. My response at the moment is PR apparently heading towards VGPR. Could you let me know what alternative treatments you had as I would be really interested. Thank you

Reply
    David Emerson says 4 years ago

    Hi Kim-

    Several things. I have researched and blog about many integrative, complementary and non-conventional therapies. These are different from the alternative therapy that I think you are referring to called antineoplaston therapy. I underwent ANP only because I had reached the end of the road where conventional MM therapy is concerned. If you are currently undergoing induction therapy and plan on then having an ASCT then you have reason to believe that you will reach remission and can continue with conventional therapies for years if not more.

    I am happy to discuss the pros and cons with ANP. The topic is more complicated than can be discussed in a post. I’m only saying that you seem to be on a conventional path right now.

    Let me know if you have any questions.

    Hang in there,

    David Emerson

    Reply
Multiple Myeloma Patients are ALL "Toxicity-Vulnerable" - PeopleBeatingCancer says 4 years ago

[…] speaking, MMers must think long-term. Studies show that achieving complete or very-good partial remission is not required for a long over… Meaning your induction therapy is probably going to be the first chemo regimen of several over the […]

Reply
Michael Lahav says 4 years ago

I note in your interesting diagram that ASCT not listed as a therapy. Maybe you want to add it.

Reply
    David Emerson says 4 years ago

    Hi Michael,

    ASCT is high-dose chemotherapy. Thanks for your input.

    David Emerson

    Reply
Alie sjonger says 5 years ago

Ik heet Alie ben 15 juni 61 jaar 6 jaar terug keer ik te horen dat ik smeulende multipel mylenom had vorige jaar werden twee kleine plekjes op mijn schedel gevonden .nu in november weer een vr scan en bloedprikken .

Reply
    David Emerson says 5 years ago

    Hi Alie-

    I don’t speak your language however I used “google translate” to translate your comment as follows-

    “My name is Alie on June 15, 61 years 6 years back, I heard I had smoldering multiple mylenom last year, two small spots on my skull were found. In November again, a fresh scan and bloodstains.”

    Based on the above words, I do not see any question of yours. What do you want to know? What is your m-spike? Have you been given a stage of myeloma? SMM is considered to be “pre-MM” not full blown MM.

    thanks and hang in there,

    David Emerson

    Reply
steve says 5 years ago

M protein level was over 500 and now is 15 after 3 cycles and before ASCT and continue with treatments.
I’m deferring ASCT. thoughts?

Reply
    David Emerson says 5 years ago

    Hi Steve-

    According to the study linked in the blog post that you came in on your overall survival (OS) does not depend on reaching complete remission after your induction therapy. Further, according to studies the timing of an ASCT also makes no difference to your OS. So you should be fine when you defer your ASCT.

    As a MM survivor myself who lives with several long-term and late stage side effects from my induction therapy and ASCT I firmly believe that toxicity must be managed carefully. See how your body handles the toxicity of your induction therapy. Are you experiencing any side effect such as PN?

    Having said the above I will go on to say that I think your M-spike should continue to fall if you undergo another cycle of induction therapy. Do you intend to have one or more cycles of induction therapy?

    What was your stage when you were first diagnosed? How are you feeling in general?

    David Emerson

    Reply
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