MGUS Survivor Story- Mary Slocum

a couple of years ago
/ Pre-Myeloma
/ By David Emerson
/ 11 COMMENTS

As you will read in Mary’s account, MGUS, a pre-myeloma stage, was not well-understood by oncology. Mary’s journey, in her own words, is written below.

Mary Slocum was the first MGUS survivor I met online. The term “e-patients” hadn’t been coined yet.

Mary, Margaret, Beth, Julius and I (and many others) were living with different stages of multiple myeloma (pre, stage 1,2,3) trying to learn more about multiple myeloma than what conventional oncology offered.

Monoclonal Gammopathy of Undermined Significance (MGUS) at a glance-

Symptoms- Bone Pain, Nerve Pain, Kidney Damage, Skin Rash, Blood Clot
Diagnosis, Prognosis- Multiple Myeloma, “Comparatively Lower Life-Expectancy”
Risk Factors- Pesticides, Human PapillomaVirus, Relatives with MM/MGUS

Monoclonal gammopathy of undetermined significance

“In 2003 I was having excruciating pains in my legs and neuropathy. It was odd because sometimes there was no neuropathy other times it was bad. I was tested for a lot of things but finally diagnosed with fine nerve pain and the possibility my nerves were demyelinating.

Then a blood test revealed MGUS 0.04 IGG. The Dr at the time told me nothing about an MM possibility and told me we would just watch and wait….He also said MGUS had no symptoms and that it had nothing to do with my pain. Then he referred me to an Oncologist and I had to wait 3 months for an appointment. During the 3 month wait I got the flu, returned to my GP who refused to see me stating “You have cancer. You need to see the cancer specialist” When I called the Oncologist he stated I did not have cancer and that my GP was wrong.

I eventually got a different GP but the whole experience told me there wasn’t a lot known about MGUS. I set out to learn everything I could about MGUS, I learned about the MM connection and began my journey to enable my immune system to help heal me, slow the progression and improve my quality of life.

Eventually I would stop working because stress seemed to exacerbate my condition. I remembered that many of the women in my family had become severely fatigued after 50 years old and I looked for a genetic testing that provided me with the information that I have a reversal on my number 10 gene, a marker for POEMS, an immune system problem.

I searched MGUS, Immune Response, Neuropathy, MM, fibromyalgia, and Chronic fatigue. I found the Galen Foundation (PeoplebBeatingCancer) and Margaret of “Margaret’s Corner“ who advocated for Curcumin.

I looked for alternative therapies, things I could do to change my immune system. I read about Burzynski and others with theories outside western medicine.

I tried Macrobiotics and thought I loved really good food too much to die with lentils on my lips. But I went vegetarian for a while and I went Organic, increased my consumption of fruits and green veggies.

I read about hydrotherapy, bought a hot tub and cranked it up to 104 degrees and soaked every day and sometimes at night before bed.

I took supplements, some helped some didn’t. I trusted my body to get better if I found things that worked.

I saw a Naturopath, had more tests that diagnosed gluten intolerance and tested for yeasts found I had one that was near impossible to cure, took nystatin for 30 days and it came back. Eventually I would read Brownstein’s book Iodine…increase my iodine intake and the yeast would disappear.

I believe my research, my making this a job improved my condition.

In 2015 my m-spike is now 1.04 IGG and I continue to take about 22 supplements a day-

3 grams of Curcumin which I believe has helped slow the progression.
I’ve become a great gluten-free chef,
And the last time I saw my Oncologist he asked what I did to take such good care of myself. 8 years ago when I went to him I said I was starting a gluten-free diet and he rolled his eyes and said he doubted it would help. This time I told him my progress was because of the Curcumin and gluten-free eating , he said “ I’m gluten-free too.”

Today Doctors acknowledge that MGUS has symptoms, neuropathy in particular.
Find people you can share information. Find people who have held off MM like Margaret and David Emerson.

Recognize you did something that got you here, whether it’s environment or genetics. Your job is to learn all you can about whatever is happening to you and trust your body, you’ve known it longer than your Doctor. Don’t be afraid to fire a doctor if they don’t support you in your journey, they don’t have to agree with you, just allow you to partner and work on your own.

From (an IGG M-spike of) 0.04 in 2003 to (an IGG M-spike of) 1.04 in 2015 I am doing OK.”

Consider MGUS Therapies such as:

non-toxic, cytotoxic/apoptotic supplements,
foods that starve multiple myeloma
evidence-based mind-body therapies,
detoxification therapies,
Non-conventional bone health therapies
Cannabis/CBD/THC oil

Ed. Note as of 7/2023- my guess is that Mary Slocum had a form of monoclonal gammopathy alluded in the editorial linked and excerpted below. In other words, multiple myeloma was not Mary’s main problem. It was the damage done to her organs by the “malignant plasma cell clone.” Mary did the best she could with little or no help from conventional medicine.

David Emerson

MM Survivor
MM Cancer Coach
Director PeopleBeatingCancer

Editorial: Monoclonal gammopathies of clinical significance: Clinical and therapeutic implications

“Monoclonal gammopathy of clinical significance (MGCS) is an umbrella term to describe a broad spectrum of disorders with remarkable organ dysfunctions related to the underlying non-malignant B or plasma cell clone.

Although the clone itself is typically very small, it is associated with diverse clinical manifestations through different mechanisms, such as monoclonal protein deposition, the biological activity of the monoclonal immunoglobulin, or angiogenic/inflammatory cytokine hyper-secretion (1, 2).

Some predominantly involve a single organ, commonly peripheral nerves, kidney, or skin, while others are systemic diseases with syndromic presentations.

Recognizing the clinical features with appropriate workups, in particular tissue biopsies, are the key to making a timely diagnosis, especially when the kidney or skin is affected. Treatment is often challenging and requires a multidisciplinary approach. In several conditions, immunomodulation with high-dose intravenous polyvalent immunoglobulin and/or clone-directed therapy are the best options with significant improvement of clinical symptoms and reversal of organ dysfunctions (1, 2)…”

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MaryAnn A OMalley says 6 years ago

I had MGus for many years but I didn’t know it was cancer , I had a high igg lambda test over 12 years ago , then Noone did anything I told my dr he did a pee test . Now 12 years later I start fracturing bones , I have myeloma , but not with all symptoms, no anemia , no high calcium. One night of kidney issue . I went from a 4000 protien level to to low in like 9 moths , no M spike any longer . I’m in remission by numbers but do have a slight active spot on my femour . I’m wondering if I’m going to go back to the MGUS stage , my dr said she’s never seen myeloma act like this . But the many fractures all in my thoratic really did me in .. I went for a second opinion I’m staying with this dr . They are talking stem cell transplant but I’m not sure I want that. I’m going to hopkins to talk to the transplant specialty Dr . Anyone ever go back to MGUS after active myeloma?

Keren Adam says 6 years ago

WOW! Please tell us 1) Which non-toxic, cytotoxic/apoptotic supplements to take?
2) What are the foods that will starve multiple myeloma?
4) What are the detoxification therapies?
5) What are the Non-conventional bone health therapies?
6) How much Cannabis — CBD/THC oil we should be taking?
This is the best MGUS website!
Thank you and thank you for being alive.

David Emerson says 6 years ago

Hi Karen-

Watch the free pre-MM webinar to learn more about pre-MM cancer coaching program.

Webinars-

Pre-MM CC-

Jen says 7 years ago

Thank you for sharing; the stories and strength are encouraging.

It is clear to me that we are only beginning to map out MGUS and its place on a spectrum with MM.

My husband and I recognize my situation with MGUS, a small M spike of 0.8 Kappa light chain, to be quite symptomatic. My life is defined by illness, weakness, and extreme fatigue. Doctors view the MGUS as only a set of numbers to watch and do not correlate this plasma disorder with my general lack of wellness.

Much of my last four years has been spent in bed, fighting infections from simple skin irritation and boils to intense boughts of influenza. My body shut down thyroid and ovary function as the result of a “perfect storm” involving renal abcesses, infection, and kidney surgery in 2014; I have been recovering since. With the help of an endocrinologist I now benefit from HRT. I have yet to get my “feet under me.” The unreliability of this body prevents me from working and the outside world has fallen away.

I have always (married 24 yrs) grown as much of our food as possible and obtained the the rest locally, ensuring its organic wholeness. Our well trained children have continued to garden in my stead. The household still prepares meals from whole sources as much as possible. Nutrition and diet have never been questionable and work based leisure marked our days, making lifestyle healthy as well. My life was tied to the earth and changed with the seasons.

As I rest in bed, fever down for the moment, fighting the flu, I wonder where to start. How do I reinvent my life when I am so frequently helpless? I am not sure about what needs to change but my growing hopelessness reminds me to look for a way out.

David Emerson says 7 years ago

Hi Jen-
I am sorry to read of your health challenges. You sound knowledgable and reasonable. It is difficult for me to offer any ideas for “reinventing yourself” based on your description. It sounds like you are doing everything you can. Hang in there.

Mgus Diagnosis- I Want to Reduce Risk Without Chemo - PeopleBeatingCancer says 7 years ago

[…] state. Margaret of Margaret’s Corner and others have maintained their pre-MM state for years now. I think you will benefit from reading Mary Slocum’s story . Let me know if you have any questions. Hang in there, David […]

katerina says 7 years ago

Hallo I am 44 years old and just diagnosed with mgus please could you give me your best nutritional advice and supplemend recomendation to prevent its proggress to myeloma? Thank you!!!

Hi Katerina-
I am sorry to read of your MGUS diagnosis. As you can read from Mary Slocum’s story pre-MM can be managed for years with evidence-based but non-toxic nutrition, supplementation, bone health, etc. therapies. Please click the link below to register to watch the free webinar about the pre-MM program. This program will provide you with the specific therapies needed to remain pre-MM.

Wait for Pre- Multiple Myeloma to Progress or Try Non-Conventional Therapies?

Let me know if you have any questions. Thanks.

David Emerson
Survivor
Cancer Coach
Director PeopleBeatingCancer

Diagnosed with SMM, SPB, or MGUS?

MGUS Survivor Story- Mary Slocum

As you will read in Mary’s account, MGUS, a pre-myeloma stage, was not well-understood by oncology. Mary’s journey, in her own words, is written below.

Monoclonal gammopathy of undetermined significance

Editorial: Monoclonal gammopathies of clinical significance: Clinical and therapeutic implications

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