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Multiple Myeloma Explained

Multiple Myeloma Explained is a pillar page linking dozens of myeloma focused blog posts on PeopleBeatingCancer.org. If you care to learn more about a MM topic such as:

  • symptoms,
  • staging,
  • diagnostic testing,
  • therapies
  • side effects, etc.

simply click on the term that is linked to take you to a more in-depth explanation of the concept you want to learn about.

Multiple Myeloma is a blood cancer cancer caused by plasma cells in the bone marrow. Plasma cells grow uncontrollably. Plasma cells and monoclonal proteins can cause symptoms such as fatigue,  resulting from crowded out red blood cells or bone damage caused by monoclonal proteins eating away at the patient’s bones.

According to conventional oncology, multiple myeloma is an incurable cancer with an average five-year survival of approximately 57%. This average depends on the patient’s age, stage at diagnosis, and other co-morbidities (health problems such as cardiovascular disease).

According to research, 96% of newly diagnosed myeloma patients are advanced at stage 2 or 3. The Food and Drug Association (FDA) has approved one single standard-of-care for all newly diagnosed myeloma patients.

In my experience as both a myeloma survivor and myeloma cancer coach, the FDA’s standard-of-care for myeloma is useful for stabilizing those myeloma patients with advanced disease (2 or 3) but is too much toxicity for the young, early stage myeloma patient.

Multiple myeloma is a rare cancer comprising of less than 2% of all cancer diagnoses and approximately 10% of all blood cancer diagnoses in the United States annually. I have also found that while general oncology is well-trained and knowledgeable about the world of cancer, it is woefully unknowledgeable about myeloma beyond the basics. Even a hematologist/oncologist (blood cancer oncologist) is generally inexperienced when it comes to multiple myeloma.

It is in the interest of all newly diagnosed myeloma patients to establish a working relationship with a myeloma specialist as quickly as possible once they receive their diagnosis.

It is common for the newly diagnosed myeloma patient to have been living with myeloma symptoms for months if not years before their formal diagnosis of multiple myeloma. This is because myeloma is a rare cancer and is difficult to diagnose.

  • Symptoms – Bone, nerve, joint pain- kidney involvement, thick blood, etc 

The most common MM symptoms are:

Myeloma is a blood cancer that follows a relapsing-remitting pattern. That means people with myeloma generally have treatment followed by a period of remission (or a stable phase), where there’s little or no sign of myeloma left. This is almost always followed by a relapse, where the disease comes back and treatment starts again.

My experience as both a myeloma patient and cancer coach is that the newly diagnosed patient must walk the fine line between the damage done by your myeloma and the damage done by your chemotherapy and radiation. When people ask about their prognosis, I believe they are really wondering about living with myeloma.

Your stage at diagnosis correlates directly with your symptoms and prognosis. If you want a clear picture of your life following your diagnosis of multiple myeloma, make sure your disease is staged.

  • Staging – Pre-myeloma, Early Myeloma, Average Newly Diagnosed Myeloma, Elderly Myeloma, End-stage Myeloma

Diagnostic testing will be a part of your life for the rest of your life. This is to say that diagnostic testing is the most effective way to peer into your bone marrow and measure the monoclonal proteins. Your diagnostic testing may be monthly, quarterly or annually. While all of the diagnostic jargon may be confusing at first, you will eventually understand what each test means and why each test is important to you.

  • Diagnostic Criteria – C.R.A.B, SLiM, CBC, BMB, M-spike, Immunoglobulins, Freelight Chains, Genetics, etc. 

In the United States, conventional board-certified oncology follows the direction of the Food and Drug Administration. The basic chemo regimens and therapy plans are referred to as the “standard-of-care.”

The term “non-conventional” applies to those cancer therapies that are not approved by the FDA. There may be dozens, even hundreds of studies that support a given therapy for the treatment of multiple myeloma, but if the FDA does not approve this therapy, it is non-conventional.

All conventional therapies have side effects. In my experience as both a MM patient and MM cancer coach, I’ve found oncology to do a lousy job of explaining a therapy’s possible side effects to the patient. In the case of long-term and late stage side effects, I don’t believe that oncology even understands many of the possible future health problems.

In short, the MM patient is on his/her own when it comes to understanding possible side effects of his/her chemotherapy and radiation.

The most common side effects/complications caused by MM therapies are:

I refer to those health problems caused by multiple myeloma as “symptoms.” I refer to health problems caused by chemotherapy and radiation as “side effects.”

I call it “riding the myeloma roller coaster.” By this I am referring to the highs and lows, ups and downs of what almost every myeloma patient goes through. And that is the remissions and relapses that inevitably follow a diagnosis of multiple myeloma.  Once you have lived with myeloma for a period of time, please learn about:

Common causes of death for the average myeloma patient is a bit heavy for me to talk about. I am doing so, however, in order to properly explain the possible pitfalls of chemotherapy and radiation.

For example, chemotherapy and radiation both cause myelosupporession which is one of the most common causes of death for myeloma survivors.

Myeloma can cause renal insufficiency and chemotherapy regimens can cause renal insufficiency. The diagnostic tests for BUN, creatinine and eGFR all test the patient’s kidney health.

The most common causes of death for multiple myeloma survivors . 

I apologize for including this topic on this pillar page. However, experience has taught me that most newly diagnosed myeloma patients want to learn about the average life of a myeloma patient. I believe it is helpful for patients to know that aggressive toxicity in the form of chemo and/or radiation can cause as many health problems as their myeloma can.

Let me also point out the there is a great deal of overlap between the most common complications of myeloma therapies and the most common causes of death for myeloma patients.