It is funny how some people just cut to the chase. One recently diagnosed patient has been emailing me and asked a great question: "How do you define a multiple myeloma specialist?" She really made me think. First, I thought, well,after a time you just know! Sure isn't a very good definition for the newbie! As as a longer-term survivor, you see the same names come up in research: Barlogie, Rajkumar, Anderson, Durie, Polumbo, San Miguel, Richardson. So how do we accurately define the term Multiple Myeloma Specialist?
One way to locate a specialist is to find practitioners at the institutions that have the best survival rates as compared to the SEER data, however at this point the specialists who post this data online or have provided it to this web site are limited. I have found that if someone is a MM specialist, their time is in such great demand that they often do not have the staff or resources to provide accurate data on a timely basis. When I check back with them after two months, they are truly sorry for the delay in providing data, and are committed to this project, but are too busy saving lives, and have not had an opportunity to provide the data yet. But they will, they assure me. With time the information will come and the results will show us who the best of the best are. So how do we tell now?
There is no degree called Multiple Myeloma Cancer Specialist that I am aware of. So given only the data that is posted here on this site and the knowledge I have obtained over the course of six years, I will provide you with what I believe is the definition of a Multiple Myeloma specialist.
Characteristics of Multiple Myeloma Specialists
1. First, they are usually hematologist-oncologist.
2. They practice at hospitals that have a defined MM treatment program or department.
3. They attend the big MM seminars, ASH (the American Society of Hematology) and ASCO (American Society of Clinical Oncology).
4. They have MM publications and have most likely given presentation at ASH and ASCO.
5. They participate in clinical trials for MM.
6. They usually are located at larger, more prestigious hospitals like Mayo Clinic in Rochester, Dana-Farber Cancer Institute, MIRT (Myeloma Institute for Research and Therapy) at UAMS, Moffitt Cancer Center, M.D. Anderson Cancer Center et al.
7. The facility or department where they are located has myeloma in the name, like UAMS-MIRT or IMBCR
( Institute for Myeloma & Bone Cancer Research).
Another step in finding a specialist near you is to search the web using the key phrase "(insert your state) Multiple Myeloma Treatment Centers", or "(insert your state) Multiple Myeloma Treatment Programs. If you find a Multiple Myeloma specialist, or you want to get more information on one of the doctors listed here, you can search his name as follows: "Dr.(insert the name) Multiple Myeloma Specialist". If you get a lot of great multiple myeloma information, chances are you have someone who is 95% more qualified than your average local oncologist. Just try this with a google search of Dr. Rajkumar, Dr. Barlogie, Dr. Berenson,
Dr. Durie, or Dr. Palumbo.
I hope that this helps you to find a multiple myeloma specialist, and "May the odds be ever in your favor!" Sorry, just saw the movie Hunger Games and their famous quote seems so appropriate for MM patients.
May God bless your MM Journey/ firstname.lastname@example.org