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Diagnosed with SMM, SPB, or MGUS?

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MGUS Diagnosis- Grandfather died at age 40 of Multiple Myeloma-

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“In addition, a common genetic susceptibility for developing both an autoimmune disease and MM/MGUS might also exist.”

Hi David- I recently received a monoclonal gammopathy of undetermined significance  diagnosis. I have just purchased your pre-MM program and consultation with you. Here are a few specifics and questions for our discussion.
    1.  My grandfather died at age 40 of MM.  (This was 50 years ago).
    2. This summer, I started having intense arm bone and leg bone pain at night.  I was then diagnosed with MGUS, although my oncologist said it’s faint and shows up in my blood but not urine.    I have bone pain in feet, arms and legs off/on.
    3. My oncologist has not taken me seriously and says I’m low risk progression.  I am worried I may have non secretory MM.
    4. I adopted a very healthy lifestyle early September, but it hasn’t helped much with the intense inflammatory pain I have in my ankles/feet.
    5. Do you think I should store my stem cells in case I need them in the future?
Thank you very much.  I hope you have a wonderful day-  Elizabeth

Dear Elizabeth-

Your questions are a good background for our discussion.
  1.  My grandfather died at age 40 of MM.  (This was 50 years ago).
I will research this issue again, but for years now, conventional oncology has maintained that MM can run in families meaning there may be a genetic/famial link to MM. 
  1. This summer, I started having intense arm bone and leg bone pain at night.  I was then diagnosed with MGUS, although my oncologist said it’s faint and shows up in my blood but not urine.    I have bone pain in feet, arms and legs off/on.
Pre-MM, both MGUS and SMM, is said to be asymptomatic. I have talked to many, many pre-MM patients who experience bone and nerve pain the way you describe.
     2. My oncologist has not taken me seriously and says I’m low risk progression.  I am worried I may have   non secretory MM.
Conventional oncology considers pre-MM to be a “blood disorder” and not cancer. Conventional oncology therefore has no therapy to offer. In a way it is a good thing that your oncologist considers you to be “low risk.” If you were a “high-risk” SMM patient, he/she would be pushing you to undergo chemotherapy.
  1. I adopted a very healthy lifestyle early September, but it hasn’t helped much with the intense inflammatory pain I have in my ankles/feet.
A healthy lifestyle is an excellent place to start to treat your pre-MM. Please consider adding anti-angiogenic foods to your daily meals. Please consider adding anti-angio-genic supplementation to your regimen. Curcumin, for example, is also anti-inflammatory. 
  1. Do you think I should store my stem cells in case I need them in the future?
This is an excellent question. I’ve never had a pre-MM patient ask me this before. While my thinking is that the possibility of an ASCT is years, probably decades away (if ever), I believe that any MM is at a low point aka barely perceptible by diagnostics, and therefore would be great for using for an ASCT. 
Give me another couple of days to organize your lab tests and then we can schedule a time to talk.
thanks
David Emerson

Recommended Reading:


Inherited Gene Mutation Increases Risk of Blood Cancer

“A rare inherited gene mutation predisposes people to developing a form of blood cancer called multiple myeloma, according to a new study by a multicenter research team led by Weill Cornell Medicine scientists.

The paper, published March 20 in Cancer Research, found that people with a mutation in a gene called lysine (K)-specific demethylase 1A, or KDM1A, had 6 to 9 times the risk of developing multiple myeloma.

The research allows doctors to identify patients who are more likely to develop the disease, so that they can receive ongoing monitoring and treatment earlier in the course of disease, which correlates with better patient outcomes…”

Monoclonal gammopathy of undetermined significance (MGUS)

Symptoms- People with monoclonal gammopathy generally don’t experience signs or symptoms. Some people may experience a rash or nerve problems, such as numbness or tingling. MGUS is usually detected by chance when you have a blood test for another condition…”

Autoimmune manifestations in patients with multiple myeloma and monoclonal gammopathy of undetermined significance

Multiple myeloma (MM) and its precursor, monoclonal gammopathy of undetermined significance (MGUS), have been linked with several autoimmune conditions in the medical literature. Yet, significance of these associations is not well understood…

Findings-Scientific literature on autoimmune conditions in patients with MM and MGUS consists of several case series and a multitude of case reports. Our analysis suggests an increased prevalence of autoimmune conditions in patients with MM and monoclonal gammopathy of undetermined significance (MGUS), including various autoimmune hematologic and rheumatologic conditions among other entities. Conversely, persons with various autoimmune conditions tend to have a higher prevalence of MGUS and MM than the general population.

Conclusions- Future research is required to explore further the link between MGUS/MM and autoimmune disorders. Inflammation in the setting of autoimmunitymay serve as a trigger for MGUS and MM.

In addition, a common genetic susceptibility for developing both an autoimmune disease and MM/MGUS might also exist.

Autoimmune hematologic and rheumatologic diseases may pose important clinical problems for the MM patients.

Therefore, a catalogue of these problems is important so that physicians are able to consider, identify and address them promptly.

 

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