You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you – Brian Tracy
"Myeloma is measured by the numbers. Those of us with it are always counting on our fingers, tallying our gains and losses. We know our IgG number. We know our M-spike. We can reel off our free light chain kappa/lambda ratio. Our hemoglobin, our red blood cell count, our creatinine levels, our neutrophil count – we know them all.
Some of us keep detailed spreadsheets, tracking our lab results over long periods of time. Doing this is yet another tool to try to control the uncontrollable. I admit, I used to keep those spreadsheets. With those sheets, I watched my relapse come in slowly like a rising tide. When my oncologist and I agreed to resume treatment, I stopped tracking my lab results. I ask about them during my appointments, but I do not capture them anymore. The dike is already breached.
Yes, myeloma – its progression, its recession – is highly suited to being charted and graphed. We measure and chart our numbers, trying to make sense of them, hoping we are not reading tea leaves.
Lately, it is the language of myeloma, indeed of Cancerland, to which I have been paying closer attention. In my rush to chart my myeloma, I forgot how much is said and unsaid. Now that I am listening more closely, the language is starting to get to me.
We have our own lingo in Cancerland. Cancerese, if you will. We speak it freely; it is the tourists that don’t always get it. The tourists think we are talking about chemotherapy, but what we are really asking is whether the water is safe to drink.
They try hard to learn it and understand it, but sometimes the gulf is too great. Recently, a very well-meaning, goodhearted, loving friend, upon hearing of my good March lab results (there’s those numbers again!), wrote: “Anyway, it’s nice to know the cancer is headed in the right direction…gone!”
No, it’s not gone. My myeloma is being squashed back down to remission levels, but it’s not gone. I want to say, “Don’t you get it? Chronic means forever. Incurable means this will kill me if I go on with it long enough.” I wondered if I spoke really slowly and very loudly, the way an only Spanish-speaking relative once did to me when trying to make me understand her Spanish, I could make all those tourists hear me."
Source: Letters From Cancerland: April Nelson, The Numbers We Count, The Words We Speak, The Myeloma Beacon, April 16, 2013.
"Most likely you were shocked to hear you had cancer. However, take consolation in the fact that there is potential for living longer today than ever before.
That’s not to say the journey will be easy. But it’s worth the effort to learn all you can about how you might feel as you move through your journey with multiple myeloma. It’s important to do all you can to stay positive and stay engaged. People who learn as much as they can about their cancer often feel more in control and better about making treatment decisions because they know what to expect." Source: Staying Positive, MyMultipleMyeloma.com
Results from a recent French study identified several factors that predict long-term survival of patients newly diagnosed with multiple myeloma. These prognostic factors include the absence of three key chromosomal abnormalities, low beta-2 microglobulin levels in the blood, and younger age - Source: The Myeloma Beacon
However, finding a clinical trial is, to say the least, a challenge. Multiple myeloma research pales in comparison to the other cancers. Maybe someday there will be a screening test!
International Myeloma Foundation
The IMF is here to help everyone battling multiple myeloma patients, families, friends, caregivers and the medical and scientific communities.
Multiple Myeloma Research Consortium
The Multiple Myeloma Research Consortium (MMRC) is a unique research model that brings together thirteen leading academic centers to speed the development of new myeloma therapies through innovative, collaborative research efforts.
My Multiple Myeloma
Multiple myeloma is a rare cancer, so try to find an oncologist and healthcare team experienced in this specific type of cancer. Don’t be afraid to seek a second opinion if you feel it is necessary.
This is especially important because treatment for a complex type of cancer, such as multiple myeloma, needs to be tailored to each individual patient.
I have been running for eleven years, and I enjoy everything about it. In 2003 I was diagnosed with multiple myeloma, a blood cancer with no cure. In 2008 doctors discovered that the myeloma was attacking my bones, but we are attacking it back, successfully so far. Running is a part of that, as well as a celebration of life. My sweetheart of 50 years and my daughter often run with me. I have a blog for running; one for myeloma; one for building my own computer; and one for everything else. Live one day at a time and make it a masterpiece!
Myeloma Institute for Research and Therapy
The UAMS Myeloma Institute for Research and Therapy is an international leader in the treatment and study of multiple myeloma and related diseases. Our team of dynamic scientists and clinicians translates advances from the laboratory into novel clinical treatments, continually expanding the boundaries of myeloma research and therapy toward cure for all patients.
The Myeloma Beacon
The Myeloma Beacon is an online service provided by Light Knowledge Resources, an independent Internet publishing company based in Princeton, New Jersey. The Beacon provides objective and unbiased news, information articles, and online forums related to multiple myeloma. Our mission is to be a key Internet resource and online community for multiple myeloma patients, their families, and others interested in multiple myeloma.
Beth Morgan Multiple Myeloma Treatment Blog
The website serves to foster community in the form of an online forum where patients and caregivers could learn more about Multiple Myeloma, a plasma cell cancer that resides in the bone marrow.
Knowledge is power. Are you facing a new diagnosis, recurrence, living with metastatic disease, or supporting a loved one through their cancer journey? The Cancer Connect Multiple Myeloma Information Center has current, evidence-based information for you. Get the facts about multiple myeloma early detection, treatment, and survivorship, and stay up to date with ongoing multiple myeloma research that could impact your treatment decisions through our daily cancer news.
Ed's Myeloma Blog
This blog chronicles my personal journey in my battle to survive Multiple Myeloma. It is cathartic for me and will hopefully keep friends and family up to date on my progress relative to beating the disease.
Fred Hutchinson Cancer Research Center
Hutchinson Center researchers are pursuing a number of clinical trials aimed at improving survival of multiple myeloma patients. The treatment approaches include bone-marrow and stem-cell transplantation and immunotherapies.
Living with Multiple Myeloma
The Killingsworth’s have dedicated their lives to helping other cancer patients and survivors learn to cope with their disease.
The adventures of an ordinary guy making his way through an extraordinary, and often times challenging, world. Please feel free to share your pearls of wisdom with me. Take courage shipmates. Land is in sight!
My name is Pat Killingsworth, and I have multiple myeloma. I am disabled now, but I still work part-time as a freelance medical writer, covering cancer related conferences and interviewing the brightest myeloma experts from around the world. I try and report on the information I gather from a patient's perspective.
National Cancer Institute
Each year, about 15,000 Americans learn they have multiple myeloma. Scientists are studying this disease to find out more about how it develops. And they are looking at better ways to treat it.
Nick's Myeloma Blog
I created this blog so that I, and others, can track the progress of my Multiple Myeloma and my efforts to combat it. I am blessed to have my family and many good friends to help me defeat this and if you are reading this, you are likely included in that group. Thanks for your support -- with it, I will beat this. So for your edification and perhaps even amusement, read on!
If you or your loved one has been diagnosed with multiple myeloma or another plasma-cell disease, Memorial Sloan-Kettering Cancer Center is ready to help. Our experienced team of doctors, nurses, and other healthcare professionals is dedicated to providing the highest-quality treatment and supportive care for our patients, as well as access to innovative therapies through our clinical trials.
Multiple myeloma (say: "my-el-oh-ma") is a kind of cancer in the bone marrow. Bone marrow is the tissue inside the bones where new blood cells are made.
The disease is called multiple myeloma because myeloma cells can occur in multiple bone marrow sites in your body.
Multiple myeloma is cancer that begins in plasma cells, a type of white blood cell. To understand multiple myeloma, it is helpful to know about normal blood cells.
No one knows the exact causes of multiple myeloma, but it is more common in older people and African-Americans.
Multiple myeloma (MM) is a cancer of plasma cells in the bone marrow. Normally, plasma cells produce antibodies and play a key role in immune function. However, uncontrolled growth of these cells leads to bone pain and fractures, anemia, infections, and other complications.
Bone pain affects almost 70% of patients and is the most common symptom. Myeloma bone pain usually involves the spine and ribs, and worsens with activity. Persistent localized pain may indicate a pathological bone fracture. Involvement of the vertebrae may lead to spinal cord compression.