Yesterday I wrote about MGUS and Margaret from Italy’s technically excellent multiple myeloma blog. I have recieved several e-mails from newly diagnosed patients and/or their family members asking me what MGUS and other commonly used multiple myeloma related acronyms stand for. I get queries like this a lot. That is one reason that I, unlike a number of other bloggers, try not to use “Internet slang” or “bloggers code” (not that there is anything wrong with that!) or whatever you would like to call the short-cuts writers and e-mailers tend to take when writing online, since many of our readers are new to blogging and sometimes even the Internet. They are here looking for answers–looking for help and emotional support following an unexpected diagnosis of multiple myeloma. So I write more formally, trying to keep in mind some readers may not understand the simplest things about myeloma–our crazy cancer. Last August I attended an International Myeloma Foundation (IMF) Family/Patient Seminar just outside of Minneapolis. This post from August 30th, 2009 might help clear-up a few of these questions:
Friday afternoon at the IMF conference in Edina, Minnesota we learned, in detail, the criteria for diagnosis in multiple myeloma. Mayo Clinic transplant nurse Teresa Micelli explained there are four basic disorders that affect plasma cells in the bone marrow. Monoclonal gammopathy of undetermined significance (MGUS), smoldering (indolent) myeloma, plasmacytoma and active myeloma. MGUS and indolent myeloma usually only require observation, known in the bus as “watch and wait.” Plasmacytoma is when a patient has a solitary tumor made of plasma cells. Radiation therapy is most often used here. Active myeloma is diagnosed when myeloma protein is present, either in urine or blood, and when a number of other symptoms are present, including at least one of what are called “CRAB” features. CRAB stands for calcium elevation, renal dysfunction, anemia, bone disease. (lytic lesions or osteoporosis) Pretty dry stuff, right? The most memorable point relating to this list has to do with the “watch and wait” part. When you have multiple myeloma, watching and waiting becomes a regular part of your life. Is the increased M-spike just an anomaly this month, or is it a trend that will require a new treatment option? Will Velcade work after Revlimid isn’t effective anymore? Will the stem cell graft take after your bone marrow is wiped-out by high-dose chemotherapy? There is no cure for multiple myeloma. Once you are diagnosed, your new normal becomes watching and waiting. Advice from the conference: Don’t watch and wait. LIVE! Live everyday as if it is your last. Don’t waste a moment watching and waiting! Amen!
I hope our more experienced readers will be patient with me as I try to keep things simple from time to time for our newer followers. They need our help!
Feel good and keep smiling, even if you have just been diagnosed with multiple myeloma. The future is looking brighter for most all of us everyday! Pat