Resources
Jul 2nd, 2010 by Lori Puente
These are some of the resources available nowadays online for myeloma. This will get you started. It will “connect” you. These are not necessarily the same as my BlogRoll, another good source to get you going.
Blood Journal
Blood Journal provides an international forum for the publication of original articles describing basic laboratory, translational, and clinical investigations in hematology. The journal covers all aspects of hematology, including disorders of leukocytes, both benign and malignant, erythrocytes, platelets, hemostatic mechanisms, vascular biology, immunology, and hematologic oncology. All articles undergo a rigorous peer review and are selected on the basis of the originality of the findings, the superior quality of the work described, and the clarity of presentation. You can, using the Public Access portion of the website, view abstracts and some full articles. Websites like The Myeloma Beacon do a great job to bring this research to the masses of lay people battling this disease.
Dr. James Berenson, (Institute for Myeloma & Bone Cancer Research. Dr. Berenson is a long time proponent of “less is more” approach to MM. If you are looking for a management route of Myeloma, he’s an excellent choice.)
CancerCompass ( a small myeloma resource with a not very active forum, but hopefully that will change if more of us get on there.)
Chemocare (a website discussing chemotherapy drugs, what they do, their side effects, when to report them or call your doctor. Sponsored by Scott Hamilton’s CARES inititatve.)
Understanding Multiple Myeloma for Beginners (Youtube video, from here you find other videos about MM that might be helpful. Notice dates of information as this disease treatment is very fluid and changing rapidly.)
IMF (International Myeloma Foundation, a group that works to fund research worldwide.)
Beth Morgan’s MM listserv sign up (This is an email listserv where MM patients from around the world inform and ask each other questions for guidance.)
Maven Semantic Medical Database – (Largest database on the web. Put in Multiple Myeloma in the search window and you will get a list of all the facilities & doctors world wide.)
Multiple Myeloma Support Group – (This is a support group on FACEBOOK, so you will need a FB account and request to join. It is what is called a “closed group”, thus the invitation. It is run by Margaret and Hanna, two great Myeloma folks. It’s a awesome online group to join and I highly recommend it.)
MMRF (Multiple Myeloma Research Foundation, a for profit think tank started by a MM patient to share research resources amongst physicians and work with pharmas and FDA to get drugs to market faster.)
The Myeloma Beacon (Independent, up-to-date news and information for multiple myeloma patients and their families. You can sign up for email updates. They also have a blog list that is very good.)
My Multiple Myeloma (a fairly new website that is still being tweaked and improved by the makers of Velcade (Millennium). It has up to date information and assistance.)
Myeloma Blog Planet (a LARGE blog roll that has Myeloma blogs from around the world feeding into it. It’s a great way to poke around and look for other writers. It is extensive.)
NCI-Multiple Myeloma (National Cancer Institute)
Our Story (An Audio of a talk I give)
Patient Advocate Foundation (free service to assist with a whole host of problems you might be encountering with your healthcare – my post)
Patient Power, (dedicated to helping you become a powerful patient, a powerful caregiver, or a powerful friend to achieve better health.)
People Beating Cancer – David Emerson (Formerly “Beating Myeloma” A forum for patients to discuss the latest research, and alternative/complementary therapies.)
Peripheral Neuropathy Treatment – Myeloma Hope Blog (from Don’s research on the subject.)
Velcade® (official website produced by the manufacturers of Velcade)
Why a Researching Facility vs. a Treating Physician Article by Lori Puente
Carenity Stronger together in illness
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