MULTIPLE MYELOMA FOR BEGINNERS
by Wayne Bizer, DO
wfbDOret@gmail.com
WELCOME:
Welcome to my blog page for patients and families of newly discovered Multiple Myeloma or those in need of a review of the basics of this disease. I am sorry for the need that has brought you to this page and am hopeful that the contents of this blog will be of value to you in your journey.
WHO:
I am a caregiver. I am a retired doctor. I am a layman. I retired after 39 years as an ophthalmologist in June of 2015 at the age of 72 and began my new career as Sue's caregiver 8 months later in March 2016, when my wife was diagnosed with Multiple Myeloma. I have done my best to learn what they never taught me about MM in medical school many decades ago.
Much of what I have learned comes from Facebook Myeloma Groups, from attending patient centered meetings, from medical sources, the three major Myeloma resources (IMF, MMRF, LLS) and from life at home with my wife. I was recently struck by the frequency of new members joining the MM Facebook groups and their search for answers, most to the same questions.
WHAT;
I decided to try my hand at creating a blog to help direct people to answers to their questions about this disease. I Intend to subdivide this blog into as many categories of disease as I can think of and to solicit the participation of other MM patient and caregivers. There are many other places to report progress and problems, emotions, and other needs for support, but I want this blog to be a resource to ask and answer questions, especially for the newly diagnosed.
HOW:
I will start the ball rolling by coming up with a series of topics that I think are of interest to newly diagnosed MM patients and caregivers. I ask you and any other MM patients and caregivers create additional new topics that make this blog more comprehensive and useful. Next, we will start trying to populate the topic headings with the internet references, personal explanations, and the daily lessons learned.. Everyone is welcome to participate.
PROBLEM:
It's difficult to offer honest answers to some of the subjects below and the questions that may follow without frightening some of the patients and caregivers. I am confident that the people who post to this blog will make every effort to be sensitive to the emotions of all concerned.
DISCLAIMER:
Nothing that is written and offered in this blog constitutes medical advice specific to you or the condition of any individual or group of individuals. This blog is a best effort of one layperson to share information and experience with another layperson. You must always consult your medical team prior to making any alteration in the treatment they have prescribed for you.
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WHAT IS MULTIPLE MYELOMA:
https://ghr.nlm.nih.gov/condition/multiple-myeloma
Multiple myeloma is a cancer that develops in the bone marrow, the spongy tissue found in the center of most bones. The bone marrow produces red blood cells, which carry oxygen throughout the body; white blood cells, which form the body's defenses (immune system); and platelets, which are necessary for blood clotting.
Multiple myeloma is characterized by abnormalities in plasma cells, a type of white blood cell. These abnormal cells multiply out of control, increasing from about one percent of cells in the bone marrow to the majority of bone marrow cells. The abnormal cells form tumors within the bone, causing bone pain and an increased risk of fractures. If the tumors interfere with nerves near the bones, numbness or weakness in the arms or legs can occur. Affected individuals may also experience a loss of bone tissue, particularly in the skull, spine, ribs, and pelvis. The deterioration of bone can result in an excess of calcium in the blood (hypercalcemia), which can lead to nausea and loss of appetite, excessive thirst, fatigue, muscle weakness, and confusion.
The abnormal plasma cells in multiple myeloma produce proteins that impair the development of normal blood cells. As a result, affected individuals may have a reduced number of red blood cells (anemia), which can cause fatigue, weakness, and unusually pale skin (pallor); a low number of white blood cells (leukopenia), which can result in a weakened immune system and frequent infections such as pneumonia; and a reduced number of platelets (thrombocytopenia), which can lead to abnormal bleeding and bruising. Kidney problems can also occur in this disorder, caused by hypercalcemia or by toxic proteins produced by the abnormal plasma cells.
Multiple myeloma is considered a rare cancer; it accounts for about 10 percent of cancers of the blood and blood-forming tissues, and between one and two percent of all cancers. Multiple myeloma occurs in approximately 4 per 100,000 people per year; there are currently about 100,000 affected individuals in the United States.
The American Cancer Society's estimates for multiple myeloma in the United States for 2018 are: About 30,770 new cases will be diagnosed (16,400 in men and 14,370 in women).
Long term survival rates in Multiple Myeloma cannot be calculated because of the number of new medication that have been approved by the FDA.
HOW DID IT HAPPEN:
https://www.cancer.org/cancer/multiple-myeloma/causes-risks-prevention/what-causes.html
Scientists still do not know exactly what causes most cases of multiple myeloma. However, they have made progress in understanding how certain changes in DNA can make plasma cells become cancerous. DNA is the chemical that carries the instructions for nearly everything our cells do. Scientists are looking at environmental, hereditary, and other possible causes of this damage to DNA. Many MM patients have chromosome abnormalities that look like the top half of one chromosome combined with the bottom half of a different chromosome. These particular abnormalities result in plasma cells crowding out the other cells created in the bone marrow.
WHAT IS AN M SPIKE:
There is an abnormal protein in the blood and urine of some people called a Monoclonal Gammopathy referred to as an "M spike". Normal people do not have an M spike. Almost all people with MM have an M spike, however a person can have an M spike and not have MM and a person can have MM and not have an M spike. That's part of the challenge in MM.
You can read more about how the M spike test is performed elsewhere.
IMMUNE ANTIBODIES: The body makes white blood cells to kill the infection. These antibodies are labeled IgG, IgA, IgM, IgD. Most MM patients have an increase in the amount of IgG or IgA in their blood. The others are rare. A MM patient almost always has an abnormality in only one of these antibodies.
WHAT ARE THE TYPES OF MM:
MGUS: Monoclonal Gammopathy of Undetermined Significance. These people have an M spike but have no evidence of any MM in their body. It seems to cause no problem in their body. About 1% of people with MGUS will develop MM per year.
Smoldering Myeloma: These people have an M spike and an elevated number of plasma cells in their bone marrow, but show no signs of MM anywhere else in their body. The precise risk factor of SMM converting to true MM is about 10% per year, or 50% in 5 years. The question of whether to treat these people or not is unproven, but many new studies suggest it is better to treat SMM sooner, rather to wait until it becomes MM.
Myeloma: Simply stated, the term Myeloma is used when a patient's health is impacted by the plasma cell accumulation. The 4 major symptoms (called CRAB) are elevated calcium in the blood that can cause thirst, nausea, constipation, loss of appetite and confusion. Renal damage and kidney failure. Anemia can cause exhaustion, weakness, mental fatigue, and forgetfulness. Bone lesions can cause pain, fractures, spine problems and loss of bone tissue throughout the body.
Staging of MM: Most doctors categorize MM in three stages. They look at many blood tests, X rays, PET scans, and a bone marrow biopsy to determine the stage of the disease. Sometimes they find there is one plasma cell tumor, (plasmacytoma) and more often there are many plasmacytomas and the term Multiple Myeloma is used. I think that your doctor should be the one to go over your exact staging.
WHAT ARE FREE LIGHT CHAINS:
WHY BONE MARROW BIOPSIES:
SELECTING A MM SPECIALIST:
SELECTING A PSYCHOLOGIST OR OTHER EMOTIONAL CARE:
WHERE CAN I LEARN MORE ABOUT MM:
ONLINE INFORMATION ABOUT MM AND SUPPORT GROUPS:
SURGERY, RADIATION AND "CHEMO":
IMiDS (REVLIMID, POLALYST, THALOMID):
PROTEASOME INHIBITORS ( NINLARO, VELCADE, KYPROLIS):
MONOCLONAL ANTIBODIES:
STEROIDS:
CLINICAL TRIALS:
STEM CELL TRANSPLANT(S):
"CHEMO BRAIN":
EXHAUSTION:
PAIN:
INTIMACY:
AVOIDING INFECTIONS:
DIETS AND OTC SUPPLEMENTS:
FINANCIAL ASSISTANCE:
FAMILY AND FRIENDS:
PREPARE FOR THE WORST??:
HOW TO COPE AND PUT A LITTLE SUNSHINE IN YOUR LIFE:
