PeopleBeatingCancer

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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End-Stage Myeloma- Then Death

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 “These real‐world data could be used to help develop strategies for improving survival in patients with Multiple Myeloma and to support management tailored to the stage of disease.”

Is death an adverse event aka side effect of multiple myeloma? What are the multiple myeloma symptoms of end-stage? 

I admit that the studies linked below may be difficult for multiple myeloma (MM) patients to read. Be advised that learning about how end-stage multiple myeloma patients die can be hard to handle. I felt a bit overwhelmed myself when I first came upon the studies.

Once I got into it however, I realized that the info contained in the studies might actually help newly diagnosed MM patients understand their cancer and pursue appropriate lifestyle therapies.

The point of this post is that there is more to multiple myeloma therapies that “standard-of-care” chemotherapy regimens. SOC is great to stabilize the advanced patient. However, just because your oncologist tells you that you are end-stage, it does not mean that you have no options.

I can say this because my oncologist told me that I was end-stage…in September of 1997. 

First and foremost, newly diagnosed MM patients should understand that almost a third of patients die before or during their first line of therapy.

I have to conclude that this is because MM is often diagnosed late. A late MM diagnosis can mean extensive bone or kidney damage or a serious infection has occured and the patient has few therapy options.

Secondly, the study points out that response to conventional therapies is highly “variable.” This means that some MM patients enjoy 10 year remissions while some patients relapse during their first year of remission.

Lastly, the study glibly states that “most deaths at later lines where due to progressive disease.” While this statement is vague, I have to conclude that once MM patients have become relapse/refractory (RR), they reach multi-drug resistance (MDR) and stop responding to conventional chemotherapy and their multiple myeloma progresses without control.

Conventional oncology can’t cure multiple myeloma. MM patients should use every evidence-based therapy at their disposal. If you have been diagnosed with MM, job number one is to find and consult with a MM specialist.

Job #2 is to think outside the box. Don’t forget the conventional oncological therapies won’t cure your cancer. I’ve spent years researching and writing about end-stage multiple myeloma.

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

Thanks,

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

Understanding mortality in multiple myeloma: findings of a European retrospective chart review

“Objectives-This study aimed to provide real‐world data on the characteristics and treatment of patients with multiple myeloma (MM) at the time of death.

Methods- The study was a retrospective patient chart review across France, Germany, Italy, Spain and the UK during 2016, and included patients who had died in the 3 months before the index date.

Results- Data from 786 patients were reviewed. At the time of death:

  • 37% of patients were receiving active treatment,
  • 12% were in a treatment‐free interval and
  • 51% were receiving only supportive care.

Death before and during active first‐line treatment was not uncommon (6% and 24% of patients, respectively) but these deaths were often not solely due to disease progression; factors such as renal failure and infection frequently played a role (in 30% and 20% of patients at first‐line, respectively).

Most deaths at later lines were due to progressive disease. Cox model results suggested that early deaths were associated with:

  • advanced disease stage,
  • high‐risk cytogenetics, and
  • poor response and relapse profiles.

Conclusions- These real‐world data could be used to help develop strategies for improving survival in patients with MM and to support management tailored to the stage of disease.”

Meaningful changes in end-of-life care among patients with myeloma

“Discussion-

In this large cohort of older patients with myeloma, almost half enrolled in hospice, and among these, approximately 17% enrolled within 3 days of death. Although hospice enrollment significantly increased between 2000 and 2013, with rates almost doubling, there was no significant rise in late enrollment, suggesting that the increase in hospice use was meaningful…

The rise in hospice use among myeloma decedents is consistent with prior studies among patients with various malignancies in the USA.,, …

The current analysis allowed us to explore potential unique barriers to timely enrollment, such as transfusion- and dialysis-dependence…

Patients who survived more than a year after their diagnosis were more likely to use hospice in a timely fashion and were also less likely to receive aggressive medical care close to death.

This is consistent with prior data showing that survival duration is an important determinant of having a home versus hospital death. The relationship between survival time and EOL care may reflect increased patient experience with-and thus the desire to avoid-the burden of additional intensive treatments.

Moreover, a longer time between diagnosis and death offers more opportunities to engage in advance care planning. Importantly, clear and consistent discussions regarding prognosis and EOL decision-making early in the disease trajectory are necessary if we are going to improve the quality of EOL care across all survival ranges…

In conclusion, our data suggest that along with vast improvements in treatment and survival, there has also been meaningful progress in EOL care for patients with myeloma in the USA.

These patients are not only enrolling more often in hospice, but the increase in use is not driven by late enrollment. Still, there remains ample opportunity for further improvement, particularly among patients who survive less than one year, are dialysis-dependent, or transfusion-dependent. Possible solutions include earlier goals of care discussions, bridge palliative care services, and modification of the hospice model to enable transfusion support.”

Leave a Comment:

23 comments
Regina says last year

I am at end stage MM. I was diagnosed January/2015. I’ve done the conventional treatment and now I’m on Darratumumab once every 4 weeks with dexamethasone every week. Dr says when I’m unable to walk into the chemo clinic we should stop all chemo. I’ve registered with palliative care.
I read an article you wrote about supplements and have been taking Omega 3 and curcumin for a few months. I need your advice….is there any other supplements that I could take that would help? TIA.

Reply
Tom Krymkowski says a couple of years ago

What alternative medicine do you use?

Reply
    David Emerson says a couple of years ago

    Hi Tom-

    I think you are asking about the therapy that put me in complete remission after my oncologist told me that I was end-stage MM. I underwent Antineoplaston therapy (Burzynski Research Institute) from 11/97-4/99. I believe my anti-mm lifestyle (nutrition, supplementation, lifestyle therapies) keeps me in remission.

    Hope this helps.

    David Emerson

    Reply
Tom Krymkowski says a couple of years ago

No discussion on alternative medicine? Like what can zinc, magnesium, b-12,folic acid and iron offer me. Can I treat low red blood cell count by taking these supplements?

Reply
    David Emerson says a couple of years ago

    Hi Tom-

    Not sure how you define “alternative medicine.” Virtually all of the MM posts on PBC are a result of a study that I’ve found or from a question from a MM patient. Further, it is difficult to answer a question like “what can zinc…can I treat…”

    Don’t misunderstand me. Those are legitimate questions. The challenge comes when I know nothing about your health, your diagnostic info, etc.

    David

    Reply
Kathryn Guillaum says 3 years ago

If I stop all treatment and just get regular testing, will you be my alternatives…coach? Maybe this should be a side-line of your coaching resume. I’ve thought about the end of life and it’s pretty foggy. Inciteful…David! HEY, are YOU ok through all of this MM journey?
You’ve been through a lot.

Reply
    David Emerson says 3 years ago

    Hi Kathryn- Yes, I am okay through all of this MM journey- thanks

    Reply
Pookie says 3 years ago

My husband was diagnosed with stage 4 multiple myeloma last July. He was scheduled for the bone marrow transplant but they cancelled it due to his heart failure. He is still receiving treatment but continues to worsen. How can I help him feel better. He is currently weak and miserable. He has lost substantial weight. He has no appetite and he has very thick saliva which causes him to spit. It is so hard seeing my husband like this. What can I do? I just want my husband back.

Reply
    David Emerson says 3 years ago

    Hi Pookie-

    I am sorry to learn of your husband’s MM diagnosis and related health challenges. Not having an autologous stem cell transplant may prove to be an overall positive for your husband. Studies confirms that ASCT are a lot of toxicity that may not lead to a longer OS.

    Further, in my experience, conventional oncology can over-treat the MM patient. Because your husband’s MM is advanced, the challenge will be to stabilize his MM and health while not giving him too much chemo aka toxicity.

    In order to make recommendations I would have to study your husband’s diagnostic testing info (CBC, metabolic panel, etc) and suggest integrative therapies. That is to say chemotherapy regimens that have been shown to be enhanced with nutritional supplements.

    A good example of this is how the antioxidant curcumin enhances the efficacy of both revlimid and velcade. In my experience, the goal is to manage his MM while not giving him so much chemo that his heart, body weight, etc. are challenged.

    If you would like to work with me to do the above, I will ask you to register for both the MM CC course as well as the MM CC consultation-

    https://peoplebeatingcancer.org/better-than-a-miracle-myeloma-cure/

    Your choice. Good luck.

    David Emerson
    MM survivor
    MM coach
    Director PeopleBeatingCancer

    Reply
Barbara says 3 years ago

I was diagnosed May, 2019 with Stage II MM. HGB was 7. Dr. wanted to give transfusions, twice within a two week time frame. I refused both due to the fact that I felt we could get that count up and I could rest when needed. (We did get HBG up to 11) Day of diagnosis I was told I had 6 months in which to live without chemo. Guess was 2 years with chemo. The good news is within 4 months of treatment we zeroed out the cancer in blood and within 6 months the protein causing the cancer to eat the bones was not measurable. I was offered the Stem Cell Transplant, I declined. I am 77 and would have to travel an hour to facility and with no guarantees and a year in which to recover and retake all childhood immunizations and being vunerable to diseases, I declined. I have responded well to treatment and continue on a .10 mg of Revlimid. I get an Zometa iv every 8 weeks now to help heal the 3 lesions in my bones. I see an oncologist, when I asked him if I need to see a MM specialist, he said he was my MM specialist. I noticed on my current blood work, my white count is low. My HGB is down to 10. My numbers are changing. I deal with a lot of stomach issues. Nausea and presents as diarrhea – I blame the Revlimid. Immodium stops it, however, I try to let it run its course to release build up of Revlimid poison (my term). Advice appreciated. I take 9 Tums a day for low calcium. (Upped to 12 this week). I am able to provide additional numbers from blood work, if that will help. I agree with other patients who have said their Dr. does not tell them anything. My Dr. reviews my past history and current numbers and says lets go get your Zometa. = End of appointment. He did tell m e one day that he thought I had “celestial beings whispering in my ear” when I refused the Stem Cell Transplant. That was a huge revelation, he was saying I made the right choice. (Now for others who may read this and could be considering SCT: If I had been younger and it was not such a hardship with distance and age of husband (83) etc. I would have most likely gone for it. I felt there were no guarantees and my quality of life was what I chose. Then Covid hit and I have separated, isolated like the rest of the cautious world).
I appreciate any advice or heads up on what I may expect progression wise. It is really difficult to know what the future holds. Dr. did tell me “it is an ugly death without chemo”, I chose to fight. We all have options, we can choose a treatment or just say no. I am confident that I made wise choices so far. I would like to know what plans I need to make with my numbers changing and my 2 year mark will be May. Thank you for this web site.

Reply
    David Emerson says 3 years ago

    Hi Barbara-

    I am sorry to read of your MM diagnosis though yes, it appears that you have made good decisions thus far. As you have experienced, chemotherapy causes side effects including stomach and blood issues (myelosuppression reduced blood cell counts).

    You may or may not come out of remission at the two year mark. It varies for everyone. Further, deciding when to treat as you slowly relapse is difficult. In my experience, low dose treatment is needed to maintain quality of life for MM patients.

    Continue with antiangiogenic nutrition, supplementation to maintain remission. Continue lifestyle therapies such as daily moderate exercise to increase bone health.

    If you would like specific input from me, you are correct, I need to study your diagnostic testing info. In other words, if your numbers are slowly increasing (m-spike, FLCs, immunoglobulins, etc.), I can give specific input as to when to resume treatment, what integrartive therapies will synergy with your chemo but I need to look at your numbers.

    Thanks and hang in there,

    David Emerson

    Reply
      Barbara says 3 years ago

      Thank you, David. I could fax this info to you. Please email fax no.

      Reply
        David Emerson says 3 years ago

        Hi Barbara- I do not have a fax. You would need to email pdf’s or similar electronic files to me.

        I am a MM survivor and MM Coach. If you would like to learn about the evidence-based, non-conventional MM therapies especially integrative therapies that combine conventional and non-conventional therapies please register for the MM Cancer Coaching Program- Course and Consultation. The MM care for the post 75 year old patient does not fall into the standard-of-care treatment for MM patients.

        https://peoplebeatingcancer.org/better-than-a-miracle-myeloma-cure/

        David Emerson

        Reply
Mara mayo says 3 years ago

Hi, my Dad’s been diagnosed with MM 2 years ago and was offered to do the stem cell transplant after that first cycle of chemotherapy drugs (which worked well for him), but he refused the transplant because he heard many bad comments on it. Any thoughts about the transplant? He’s 75 now.

Reply
    David Emerson says 3 years ago

    Hi Mara-

    I should study your dad’s diagnostic testing info first but in general, the 75 year old MM patient will live a better (QOL), longer life by not having the aggressive, high dose chemotherapy that comes with an autologous stem cell transplantation.

    Especially if your dad is undergoing non-toxic therapies that also kill MM cells- curcumin, exercise, whole body hyperthermia, others.

    How many rounds or courses of induction therapy (RVD?) did your dad have two years ago? His MM may still be sensitive to that therapy.

    Is your dad seeing a MM specialist? I can recommend names if you’d like.

    Let me know, thanks.

    David Emerson

    Reply
Kimkate says 3 years ago

My dad has had mm for 4yrs since diagnosis….. He now has kidney failure and has refused anymore treatment, I’m feeling really bad not being able to help, and he doesn’t want to see me because he looks so terrible….. Is anyone else going thru the same as me plz, i! Really struggling xxx

Reply
    David Emerson says 3 years ago

    Hi KimKate-

    I’m sorry to read of your dad’s kidney failure. All MM survivors reach end-stage eventually. If you are asking if MM patients also develop kidney failure the answer is yes. Kidney failure is the second leading cause of death amongst MM survivors.

    As for the caregiver who has to figure out what to do? Again, the answer is yes, there are online groups of caregivers. You are in an extremely difficult spot.

    Let me know if there is anything PeopleBeatingCancer can do for you.

    David Emerson

    Reply
Debora Will says 4 years ago

Please send information on smoldering multiple myeloma

Reply
Debora Will says 4 years ago

Trying to contact you

Reply
Debora Will says 4 years ago

One year ago diagnosed with smoldering myeloma. Could you offer information at this stage?

Reply
Debora Will says 4 years ago

Hi David
I am as diagnosed about one year ago with smoldering myeloma and started out doing blood work every 3 months. My oncologist doesn’t seem to want to explain a lot to me but maybe it’s just my perception. He now wants to see me for blood work every 6 months. At first we did an X-ray and a ct scan along with bone marrow test and urine analysts. It just seems like the only thing iam doing is waiting to get worse before taking medication but is there anything I could do to help myself?

Reply
kkhuzaabii powell says 4 years ago

I’m terrified I was told I have MM, DO I have to get chemo, and radiation, to live..

Reply
    David Emerson says 4 years ago

    Hi Boog,

    (I am nicknaming you Boog because there was a famous major league baseball player named Boog with the same last name and because your first name is difficult for me to spell- I hope this is okay with you.).

    Please take a deep breath. Yes, a diagnosis of multiple myeloma is serious. However, MM is a very manageable cancer. Much of your treatment plan is based on your current stage and symptoms.

    Have you been given a stage or any diagnostic information such as “m-spike”

    Are you experiencing any symptoms such as bone damage (broken bones), blood clots, kidney damage, anything?

    How old are you? Do you have any other health problems such as heart disease, diabetes, etc?

    If you can give me more information about your current status I can walk you through the basics of a MM diagnosis.

    Hang in there,

    David Emerson

    Reply
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