FOR THE CURIOUS AND HIGHLY MOTIVATED, I have curated here some basic information and links about Multiple Myeloma, Polycythemia, and other useful resources.
Readers are encouraged to share insights and resources here too, using the Reply function below.
A caveat: Myeloma patient experience is evolving due to research advances and targeted treatments that are coming online with great rapidity. If you read articles more than a couple of years old, you may discover they do not contain current information — especially with regard to standards of care and survival rates. Don’t panic! Most patients obtain a good clinical response from current targeted treatments, as I have.
Definitions:
Multiple Myeloma Definition: Mayo Clinic — Multiple myeloma is a cancer of the plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
What is Multiple Myeloma: Multiple Myeloma Research Foundation — Multiple myeloma, also known as myeloma, is a hematologic cancer, or cancer of the blood. It is the second most common blood cancer, after non-Hodgkin’s lymphoma, and represents approximately 1% of all cancers in white individuals and 2% of all cancers in black individuals.
Polycythemia Vera Definition: Mayo Clinic — Polycythemia vera is a slow-growing type of blood cancer* in which your bone marrow makes too many red blood cells. (*Sources vary on whether PV should be considered a type of cancer.)
Secondary Polycythemia: Medscape – The word polycythemia indicates increased red blood cells, white blood cells, and platelets. Much of the time, the term is used in place of erythrocythemia, or pure red blood cell increase, such as in secondary polycythemia.
Best Book on Myeloma:
The Myeloma Survival Guide — For followers who want to “go deep” about the illness and its treatment, this is a current and most thoughtful presentation, with great insights into the patient and caregiver experience.
(Cover links to Amazon.com)
Key Organizations:
International Myeloma Foundation — A rich resource for Myeloma patient information and scientific research. IMF sponsors numerous educational events for patients and professionals. It also funds and coordinates activities of the International Myeloma Working Group, which coordinates research and standard-setting among leading physicians throughout the world.
The Leukemia & Lymphoma Society® (LLS) — A global leader in the fight against cancer. The LLS mission: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care.
Multiple Myeloma Research Foundation — Another well-known and respected fund-raising organization dedicated to advancing Myeloma research. Its web site contains a trove of information for patients, caregivers, family and friends.
MMRF founder Kathy Giusti was interviewed in Fortune on Sept. 1, 2014 (print and video).
TBA Foundation — TBA Foundation is dedicated to providing the tools that myeloma patients and their families need to cope with the circumstances of this disease. The foundation also performs statistical and social research.
MPN Research Foundation — Devoted to original research in pursuit of new treatments — and eventually a cure — for polycythemia vera, essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPN).