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Multiple Myeloma Diagnosis? 6 Experience-based Non-Conventional Therapies

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The Tips Below are Knowledge-based, Non-Conventional Therapies, shared by a 3 time cancer survivor commented on a long-term multiple myeloma (MM) survivor.

Image result for photo of cancer survivor

I am a long-term MM survivor and MM cancer coach. The article linked and excerpted below from the Huffington Post caught my eye so I thought I would write about it. While I don’t agree with everything on the list (and I did add number 6 to the list), if you’ve experienced a multiple myeloma diagnosis, you will benefit from this information.

It is a list of knowledge-based,  non-conventional therapies.

My MM experiences have been all over the place-good, bad and ugly. Further, by researching, blogging about and working with Multiple Myeloma diagnosis patients I have learned a lot about our supposedly inclurable, rare blood cancer.

Keep in mind that my experience has been odd:

  1. my original cancer diagnosis was the outlier- a multiple myeloma diagnosis is less than 2% of all cancers diagnosed in the U.S. annually,
  2. I have beaten every prediction and every statistic, and
  3. I am at a point in my life where I am comfortable being an odd, outlier…

To learn more about multiple myeloma diagnosis, scroll down the page, post a question or comment and I will reply to you ASAP.

Thank you,

David Emerson

  • Cancer Survivor
  • Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:

5 Things Everyone Should Know When First Diagnosed With Cancer 

(I added #6)

1) Do not read the Internet–

I couldn’t DISAGREE more with this first item. Everything I have learned about my cancer was from the Internet. The 501c3 Nonprofit that I manage, PeopleBeatingCancer is Internet-based. Be careful though. The info on the Internet can be wrong. Or exaggerated.

2) Ask questions-

I  agree with this one. The problem here is that I believe in asking questions using the Internet. Oh well…It has become a cliche but knowledge is power.

3) Understand that there are no short-term solutions–

I agree with this one. Sort of. It really depends on what your definition of short term is. I work with pre-MM patients (MGUS or SMM) whose m-spike drops a bit weeks after they begin curcumin supplementation. I work with full-blown MMers whose respond to induction chemo (RVd) after the first course of therapy.

4) Enjoy the days when you feel good

Not every day is going to suck as a cancer patient. Yes, many will, but if you have chemo once every three weeks, most likely that second week you will start to feel more normal. So do normal things when you feel better….

5) Use the cancer card

Be social. If you want to go out with your friends, drive yourself. And when you want leave because you aren’t having fun, no one will ever question why you are leaving. It’s okay to be a little selfish. The goal is to take care of yourself. Sometimes that means saying yes, and sometimes that means saying no…

6) Cancer is NOT a war.

I have never fought cancer. I am not beating cancer. My analogy of choice is that cancer is a chess match. Learn as much as you can by asking questions using the Internet. Then strategize. You may have to sacrifice some of your pieces to your MM but you CAN out-think your MM.

Leave a Comment:

7 comments
Familial or Genetic Predisposition to Multiple Myeloma? - PeopleBeatingCancer says 4 years ago

[…] Multiple Myeloma Diagnosis? 6 Experience-based Non-Conventional Therapies […]

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Multiple Myeloma Therapy- Jennifer Aniston's Sauna aka WBH? - PeopleBeatingCancer says 4 years ago

[…] Multiple Myeloma Diagnosis? 6 Experience-based Non-Conventional Therapies […]

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Stage 1 Multiple Myeloma- Continue Non-toxic or Go Low-dose Chemotherapy? - PeopleBeatingCancer says 4 years ago

[…] Multiple Myeloma Diagnosis? 6 Experience-based Non-Conventional Therapies […]

Reply
Javin says 7 years ago

My father was diagnosed with malignant melanoma last october and was told he had 18 months to live if he didn’t do chemo. What is the best thing for me to do for him? He doesn’t want to do chemo and still hasn’t.

Reply
    David Emerson says 7 years ago

    Hi Javin-

    I am sorry to learn of your father’s malignant melanoma diagnosis. Understanding that your father does not want chemo, I will try to answer your question “What is the best thing for me to do for him?”

    1) Please understand that, despite their best intentions, conventional oncology can offer little if any hope for you and your father. Meaning, in all probability, toxic therapies will severely limit your father’s quality of life and will do little if anything to increase is length of life.

    2) Further, separate from those therapies that your father undergoes going forward, a growing number of studies document how palliative care increases both quality and length of life in situations like your father’s. Palliative care is NOT the same as hospice care. I can provide studies and details if you choose to purse this.

    3) Further, there are a number of relatively inexpensive non-conventional therapies that may help your father. Your challenge is that these therapies are not FDA approved and offer little if any research. All you have to go on is anecdotal evidence (testimonials). I can offer examples of non-conventional therapies that have been more reliable than others.

    4) The one form of conventional oncology that you should pursue is the possibility of immunotherapy for your father. Your dad will have to undergo genetic or molecular sub typing to see if his cancer may respond to one of the newer immunotherapies such as Opdivo or Keytruda.

    While these therapies DO have side effects, they are reportedly much less severe than toxic chemotherapy.

    Lastly, where has your father’s skin cancer spread to? Bones? Other organs? I ask in case the spread can be managed for your dad.

    Thanks and let me know. Hang in there,

    David Emerson
    Cancer Survivor
    Cancer Coach

    Reply
Ed Parpala says 9 years ago

My Mother was diagnosed with lung cancer. She has 2/3 of her right lung surgically removed. Her Surgeon told her she was cancer free but said she may still need chemo as they found one cancerous lymph node. She went to have a Pet Scan and that scan showed spots on her liver which the oncologist believes to be cancer cell that had spread from her lung. However, he cannot be sure as they have not yet biopsied these spots on her liver for a exact diagnoses. They said that she may have 12 months to live without chemo and possibly a 40 % chance to live 18 months with chemo. Quite naturally she is very distressed about this. Based on your research, do you think the doctor is right? Should she get a second opinion? What else might she do to improve her odds of survival beyond 12-18 months? are there any other treatments she might try and finally, do you know of anyone who had a similar diagnoses and has survived beyond the 12-18 month range.

Thanks,

Ed

Reply
    David Emerson says 9 years ago

    Ed-
    I am sorry to read of your mother’s cancer diagnosis. Several things-

    1) yes, please get a second opinion. Each onc, each institution will have different specialties, different expertise- Your insurance should cover the second opinion and you will learn each time you meet with an onc. You and your mom will make better decisions.

    2) it is impossible to quote prognosis statistics (12-18 months to live) without an exact diagnosis. Many of your decisions will be based on your mom’s exact diagnosis. The more info you give me, the more specific info I can research and give you. It is unfair for your onc to expect you to agree with his/her recommendations without an exact diagnosis, stage, molecular/genetic testing.

    3) Regarding your question “They said that she may have 12 months to live without chemo and possibly a 40 % chance to live 18 months with chemo.” Ask you onc if this statement means that your mom has 60% chance to live LESS than 18 months with chemo. I am not trying to sound annoying, I am simply saying that chemo for stage 4 lung cancer, if this is the stage of your mom, has a downside that oncs don’t mention.
    And that downside is that your mom lives LESS than 18 months with poor quality of life. The difficult part of this is asking your onc the right questions to reveal the risk/reward equation.

    5) in order to answer your question “What else might she do to improve her odds of survival beyond 12-18 months? are there any other treatments she might try?” Yes. But a great deal depends on your mother’s age, physical condition, stage/molecular testing. Aggressive chemo can be debilitating to the patient.

    There are several non-toxic supplements that slow or stop lung cancer- either taken alone or in conjunction with chemo- consider undergoing less chemo than the standard of care- let’s discuss-

    http://www.ncbi.nlm.nih.gov/pubmed/20651361

    http://www.foodconsumer.org/newsite/Nutrition/Supplements/omega-3_fatty_acids_advanced_lung_cancer_0921120728.html

    https://search.yahoo.com/yhs/search;_ylt=A0LEVveHVLRUBDkAWkUPxQt.;_ylc=X1MDMjExNDcwMDU1OQRfcgMyBGZyA3locy1tb3ppbGxhLTAwMQRncHJpZANYeWVFdDhsUlNydWZaYl9LczZ0d1lBBG5fcnNsdAMwBG5fc3VnZwM1BG9yaWdpbgNzZWFyY2gueWFob28uY29tBHBvcwMxBHBxc3RyA2x1bmcgY2FuY2VyLCB2aXRhbWluIARwcXN0cmwDMjEEcXN0cmwDMjEEcXVlcnkDbHVuZyBjYW5jZXIgdml0YW1pbiBkBHRfc3RtcAMxNDIxMTA0Mjk0;_ylc=X1MDMjExNDcwMDU1OQRfcgMyBGZyA3locy1tb3ppbGxhLTAwMQRncHJpZANYeWVFdDhsUlNydWZaYl9LczZ0d1lBBG5fcnNsdAMwBG5fc3VnZwM1BG9yaWdpbgNzZWFyY2gueWFob28uY29tBHBvcwMwBHBxc3RyAwRwcXN0cmwDBHFzdHJsAzIxBHF1ZXJ5A2x1bmcgY2FuY2VyIHZpdGFtaW4gZAR0X3N0bXADMTQyMTEwNDI5NQ–?p=lung+cancer+vitamin+d&fr2=sb-top-search&hspart=mozilla&hsimp=yhs-001

    http://www.ncbi.nlm.nih.gov/pubmed/20031166

    Ed- I will be direct with you. Your mom’s options are limited. If she is stage 4 then her prognosis, as you say, is 12-18 at best. Your decision is not chemo or not, it is the degree of chemo (how much toxicity can your mom withstand) when combined with supplementation. Low doses of chemo combined with supplementation may be a tough-sell to your onc.

    If this direction, this integrative therapy interests you we can discuss further. Let me know.

    Thanks and hang in there-

    David Emerson

    Reply
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