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MGUS, Nerve Pain – Clinical Trial?

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“Conclusion: The median survival rate of study patients with MGUS was only slightly shorter than that of a comparable US population.”

Hi David- My husband is 59. He was diagnosed with Multiple Myeloma yesterday. The bone marrow biopsy indicated a plasma cell percentage of 10%. I understand this is monoclonal gammopathy of undetermined significance (MGUS).

My husband’s hematologist/oncologist said the diagnosis was MGUS but because of his neuropathy both feet she felt he should go to Dana Farber and start a clinical trial which includes chemo.   My husband’s oncologist said that he had multiple myeloma based on the neuropathy.

He rides a bicycle for up to 2 hours frequently. My husband  is 6 feet tall and weighs 158. He used to weigh 174. I am looking for naturopathic treatment to build his immune system. Please advise. Molly


Hi Molly-

Several issue for you and your husband to consider. My perspective is that of a long-term MM survivor. I did not do well with conventional MM therapies. I am biased… My bias is that conventional oncology over-treats patients. I am not a professional of any type.  Just getting that out there.
  • MGUS is pre-MM. Not cancer. The prognosis for MGUS has a low (1%) risk of developing full MM annually. According to the Mayo Clinic, 3-5% of those over 50 years of age have MGUS. The vast majority die of old age and never know about their MGUS.
  • In theory, MGUS is asymptomatic. Obviously, this is not true in your husband’s case.
  • According to research, plasma cells (MM cells) can be toxic to nerves. This is what causes the pain.
I will link info about possible therapies to manage the nerve pain below. My thinking is that it is over-kill to encourage treatment (clinical trial) to the MGUS patient with nerve pain. But you two must decide this.
Before you consider active treatment in the form of a clinical trial, in my opinion you should try all forms of evidence-based but non-conventional therapies such as vitamin D, vitamin B12, etc. But again, this is up to you two.
Let me know if you have any questions.
Hang in there,

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


Long-term follow-up of 241 patients with monoclonal gammopathy of undetermined significance: the original Mayo Clinic series 25 years later

Objective: To determine the long-term outcome of patients with monoclonal gammopathy of undetermined significance (MGUS).

Patients and methods: We reviewed the medical records of 241 patients with MGUS who were examined at the Mayo Clinic in Rochester, Minn, between January 1, 1956, and December 31, 1970.

Results: Follow-up was 3579 person-years (median, 13.7 years; range, 0-39 years). Only 14 patients (6%) were alive and had no substantial increase of M protein at last follow-up; 138 patients (57%) died without evidence of multiple myeloma or a related disorder; a malignant lymphoplasma cell proliferative disorder developed in 64 patients (27%). The interval from diagnosis of MGUS to diagnosis of multiple myeloma or related disorder ranged from 1 to 32 years (median, 10.4 years).

Conclusions: The median survival rate of study patients with MGUS was only slightly shorter than that of a comparable US population. Risk of progression of MGUS to lymphoplasma cell malignancy is indefinite and persists even after more than 30 years of follow-up, with no reliable predictors of malignant evolution…”

Nerve Pain and Nerve Damage

“Your nervous system is involved in everything your body does, from regulating your breathing to controlling your muscles and sensing heat and cold…

  1. Sensory nerves. These nerves relay information from your skin and muscles back to your spinal cord and brain. The information is then processed to let you feel pain and other sensations…

Sensory nerve damage may produce the following symptoms:

  • Pain
  • Sensitivity
  • Numbness
  • Tingling or prickling
  • Burning
  • Problems with positional awareness

What Causes Nerve Pain and Nerve Damage?

There are more than 100 different types of nerve damage. The various types may have different symptoms and may require different types of treatment…

  • Cancer. Cancer can cause nerve pain and nerve damage in multiple ways. In some instances, cancerous masses may push against or crush nerves. In other cases, certain types of cancermay result in nutritional deficiencies that affect nerve function. Additionally, some types of chemotherapy and radiation may produce nerve pain and nerve damage in certain individuals…
  • Nutritional deficiencies. Deficiencies of certain nutrients, including vitamins B6 and B12, may produce symptoms of nerve pain and nerve damage, including weakness or burning sensations. Nutritional deficiencies that cause nerve damage may also result from excessive alcohol ingestion or develop after gastric surgery. See a list of food sources of vitamins and minerals

How Are Nerve Pain and Nerve Damage Treated?

In many instances, nerve damage cannot be cured entirely. But there are various treatments that can reduce your symptoms. Because nerve damage is often progressive, it is important to consult with a doctor when you first notice symptoms. That way you can reduce the likelihood of permanent damage.

Often, the first goal of treatment is to address the underlying condition that’s causing your nerve pain or nerve damage. This may mean:

  • Correcting nutritional deficiencies
  • Physical therapy or surgery to address compression or trauma to nerves…

 

 

 

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