This resource was originally published by International Myeloma Foundation here.
Multiple myeloma tests are diverse and complex. Tests are used throughout the course of your disease — for initial diagnosis, discovering the type of myeloma you have, staging the disease, and for monitoring your response to treatment.
What Can Tests Tell Us?
Tests results are the most important tools that your doctor will use to:
- Diagnose monoclonal gammopathy of undetermined significance (MGUS), smoldering multiple myeloma (SMM), and active myeloma.
- Assess the risk of progression of MGUS or SMM to active myeloma.
- Assess the stage of your myeloma.
- Assess your genetic risk factors.
- Evaluate your response to treatment.
- Monitor remission periods and determine when to start treatment again.
- Monitor for disease-related and treatment-related side effects.
Tests for multiple myeloma patients fall into three major categories:
- Blood and urine tests
- Bone marrow tests
- Imaging studies
No Single Test Tells the Whole Story
Each test can be thought of a piece of puzzle. Only when the pieces are assembled together can a patient and their doctor make their proper conclusions and decisions. Myeloma is unique in each patient; therefore, it’s important not to compare your test results with other myeloma patients.
We encourage you to discuss all your test results with the doctor who is treating you. Your doctor will be able to put all the puzzle pieces together to put your results in context. The patterns of results viewed over time are more meaningful than any single test itself.
Save Copies of Your Test and Lab Results
It is important to request, print out, and save copies of your results. Bring a summary of results with you when you to all oncology visits or when getting a second opinion.
Variables That May Affect Your Test Results
Be aware that your lab results can be affected by many variables, including:
- other medications and supplements that you may be taking
- the amount and type of fluids you have consumed
- whether you have eaten before the test
Before undergoing tests, consult with your doctor to make sure there are no special instructions about taking certain medications, supplements, food, or drinks.
This resource was originally published by Myeloma Crowd here.
We thought it might be helpful to have a document that describes your multiple myeloma test lab results and helps identify the important markers. This document contains a diagnosis summary checklist, a treatment summary form and each lab result described and color-coded for relevance.
Download It Here:
This resource was originally published by Everyday Health by Pamela Kaufman here.
Multiple myeloma is a rare cancer that affects plasma cells.
Plasma cells, a type of white blood cell, are found primarily in bone marrow — the soft, inner tissue of bones.
Plasma cells are an important part of the immune system. They produce proteins called antibodies that help the body fight infection by attacking and killing germs.
When plasma cells grow out of control and begin to collect in bone marrow in different parts of the body, the result is multiple myeloma.
Multiple myeloma can cause a number of complications, some of which may be very serious. These include:
- Low blood counts As myeloma cells multiply in bone marrow, they crowd out red blood cells, white blood cells, and platelets. Low red blood cell levels (anemia) can result in fatigue and weakness. A drop in white blood cell count can decrease resistance to infection. Lack of platelets can lead to significant bruising and bleeding even from minor scrapes or cuts.
- Bone and calcium issues Myeloma cells produce substances that speed the breakdown of old bone and slow the buildup of new bone. This leads to holes in bones and osteoporosis (low bone density), raising the risk of fractures. Even normal activities like coughing and walking may lead to a broken bone.
- Myeloma cells not only reduce the number of infection-fighting white blood cells, they produce a single type of abnormal antibody that does not fight infection. This antibody is referred to by a number of names: monoclonal immunoglobulin, monoclonal protein, M protein, M-spike, and paraprotein.
- Kidney damage The antibody produced by myeloma cells can build up in the blood and urine, leading to kidney problems. (1)
How Many People Get Multiple Myeloma?
According to the most recent statistics from the National Cancer Institute, almost 31,000 Americans will receive a multiple myeloma diagnosis in 2018.
That makes multiple myeloma relatively rare, accounting for 1.8 percent of all new cancer cases.
Around 0.8 percent of men and women in the U.S. will be diagnosed with multiple myeloma at some point during their lives.
The number of people diagnosed with multiple myeloma has climbed an average of 0.9 percent each year over the course of a decade, according to the most recent data.
But death rates from multiple myeloma have decreased 0.5 percent per year, reflecting improvements in treatment. (2)
What Causes Multiple Myeloma and What Are the Risk Factors?
Scientists still don’t know what causes multiple myeloma or how to prevent it. For most people who develop the disease there are no clear reasons why.
Researchers have made progress understanding the DNA mutations (changes) that turn healthy plasma cells cancerous. This is vital work that many hope will point the way to improved treatment.
Researchers have identified a number of factors associated with increased multiple-myeloma risk.
- Age Multiple myeloma is most often diagnosed in adults over the age of 65.
- Gender Men are at a slightly higher risk than women.
- Race African-Americans are almost twice as likely to get multiple myeloma as white Americans.
- Family history Having a close relative with multiple myeloma increases a person’s odds of developing it. Is multiple myeloma hereditary? Sometimes. But most people with multiple myeloma have no family history of the disease.
- Obesity People who are overweight or obese are at higher risk.
- Other plasma cell diseases Men and women with a relatively benign condition called MGUS (monoclonal gammopathy of undetermined significance) should be vigilant: Every year 1 percent of these people go on to develop multiple myeloma. Patients with a type of blood cancer called solitary plasmacytoma also have a greater chance of developing multiple myeloma. (1)
The Signs and Symptoms of Multiple Myeloma
When symptoms of multiple myeloma do occur, they may include:
- Bone pain, most often in the back or ribs (although pain can occur in any bone)
- Bone fractures
- Frequent infections
- Numbness, tingling, burning, or pain in the hands and feet
- Excessive thirst and urination
- Abnormal bleeding
- Chest pain
- Decreased alertness
- Shortness of breath
Doctors sometimes use the acronym CRAB to describe myeloma symptoms:
- C — calcium elevation (high levels of calcium in the blood)
- R — renal insufficiency (poor kidney function)
- A — anemia (low red blood cell count)
- B — bone abnormalities (lesions) (3)
How Multiple Myeloma Is Detected and Diagnosed
In order to make a multiple myeloma diagnosis, a medical team has a lot to consider: the patient’s symptoms, the results of a physical exam, and the findings of a battery of tests. Doctors look for telltale substances in blood and urine (calcium and certain kinds of proteins and antibodies), analyze samples of bone marrow and bone, and search for signs of disease in imaging tests such as X-rays, CT scans, and MRIs. Whatever else doctors find, a myeloma diagnosis will always involve a tumor made up of myeloma cells or at least a high concentration (at least 10 percent) of these cells in the bone marrow.
In about a fifth of cases, doctors detect multiple myeloma during routine physical exams in patients without any outward signs of the disease. (5)
A diagnosis of asymptomatic multiple myeloma, also called smoldering multiple myeloma, does not typically lead to immediate treatment. Instead physicians often choose to take a watch-and-wait approach, performing regular blood and urine tests and offering medication or other therapies only when the cancer advances. (5)
The Stages of Multiple Myeloma and What They Mean
Staging multiple myeloma is the method doctors use to assess how much cancer is in the body and where it is. Doctors stage the disease in order to come up with a treatment plan and a prognosis (a prediction of the course of the illness).
Staging may initially involve categorizing the cancer as symptomatic or asymptomatic, since patients in the first category generally don’t receive treatment and can remain stable for many years. Doctors may also categorize the cancer as stage 1, stage 2 or stage 3 using the Revised International Staging System (RISS). The RISS looks at a number of factors, such as blood levels of beta-2 microglobulin — a protein produced by myeloma cells. (6)
Is Multiple Myeloma Curable?
Multiple myeloma has long been considered an incurable disease.
Throughout the 1990s, the average life expectancy for people with multiple myeloma was three years. Advances in medicine since then have increased median survival to more than five years, while some patients are pushing that number to upward of 10 years. (7)
A small subset of patients have been known to live in remission for decades. Are they “cured”? Doctors say it might be possible, although they remain highly cautious about making more definitive claims.
Meanwhile, new treatments are coming down the pike that hold promise to anyone facing a multiple myeloma diagnosis. These treatments aim to relieve symptoms, provide prolonged remissions, and increase the multiple myeloma survival rate.
Multiple Myeloma Treatments: Drug Therapy, Stem Cell Transplants, and More
Oncologists have many weapons in the fight against multiple myeloma. Treatment options include:
- Chemotherapy and drug therapy, including targeted drugs that home in on specific genes or proteins in the cancer
- Stem cell transplantation (in which cancerous cells are replaced with healthy cells) combined with high-dose chemotherapy
- Radiation therapy
- Supportive care to relieve symptoms
- Clinical trials of new drugs, drug combinations, or stem cell transplant approaches
The rapid pace of research means that more and more treatments are in the pipeline. Among the most promising new treatments under investigation are those involving a type of immunotherapy called CAR T-cell therapy. CAR T-cell treatments involve genetically engineering a patient’s own T cells (a type of white blood cell) to allow them to recognize and attack cancer cells.
For every type of approach, outcomes for people with multiple myeloma depend on a number of factors, including overall health and ability to tolerate treatment.
Quality of care also makes a difference. The Leukemia and Lymphoma Society emphasizes the importance of seeking out a doctor with experience treating multiple myeloma or one who will work in concert with a specialist. These specialists are usually called hematologist oncologists. (8)
Prognosis: What to Expect After Being Diagnosed
The median five-year survival rate (the percentage of people who live at least five years after diagnosis) for multiple myeloma is a little more than 50 percent. (9) But that doesn’t tell the whole story of what a person with this rare cancer of the plasma cells may experience. Life expectancy and quality of life depend on a number of factors, including a person’s age and overall health. The type of multiple myeloma also makes a difference. People with the early kind called smoldering multiple myeloma may remain symptom-free for many years before the disease begins to take a toll. Conversely, patients who have a form of myeloma with a high-risk genetic feature may have an especially poor prognosis.
Life After Multiple Myeloma Treatment
With multiple myeloma there’s no simple way to define “survivorship.” While this type of cancer is considered incurable, some patients consider themselves to be survivors if they have no signs of disease after treatment. Others call themselves survivors because they’re committed to pursuing treatment over the long term and doing whatever they can to prevent recurrence.
Managing a mix of powerful emotions — fear, hope, guilt, joy — is part of life as a multiple myeloma survivor. An in-person support group, online community, and individual counseling can help patients understand complicated feelings.
For patients who regard their illness as motivation to make positive changes in their life, survivorship can involve eating well, not smoking, limiting alcohol and managing stress. It can also entail returning for regular medical checkups and tests as well as services such as physical therapy, nutritional planning, and pain management. (10)
Additional Resources for Multiple Myeloma
If you’ve been diagnosed with multiple myeloma, there are a number of excellent resources that can help you understand and cope with your condition. Click on the link below for more information on organizations, blogs, and websites that provide a wealth of information as well as medical, emotional, and financial support for people with multiple myeloma.