Multiple Myeloma - Survival Rate Statistics by Hospital
  • Home
  • Higher Risk Myeloma
  • Myeloma Blog
  • Myeloma Specialists Listing
  • Doctor Submissions
  • Contact Us

Myeloma Beacon's - "Choosing a Mutiple Myeloma Specialist" My two cents!

6/7/2014

3 Comments

 
Picture
The Myeloma Beacon recently ran an article on how to "Choose a Multiple Myeloma Specialist", and although well written, it seems to minimize the one absolutely key requirement. Other than in the title it did not emphasize the  necessity to make sure the person is a skilled multiple myeloma specialist.


You can read the article if you CLICK HERE.  It says you can find the one specialist  who is right for you if you answer the following questions.

1. Is the doctor a Teller or an Asker?
2. Is the doctor well established?
3. Does the doctor have ties to the area?
4. Is the doctor certified in hematology?
5. Is the doctor covered by your insurance?
6. How much are you willing to do to get the doctor you want?



All good questions, but only after you are satisfied that the doctor is one of the 100 or so SKILLED multiple myeloma specialists in the USA and maybe double that worldwide.  I left the following two comments, which I hoped would help to make this point, however for some reason my comments are considered spam, or they chose to leave them in limbo awaiting moderation.  I obviously irritate someone at the Beacon.  It is for this reason I have chosen to write this article because I feel my two comments are worth airing.  And for all of those who feel their comments have been censored about this subject, please feel free to provide them in my comments section.  My comments were as follows:

Comment 1 -

I think the most important part of this article is the title, "Choosing A Multiple Myeloma Specialist". Based on the National Cancer Institute's data, the average life expectancy is just 4 years, whereas many Myeloma Specialist's provide survival data of 8 to 12 years on average.  If you find one who is more compatible with your needs, all the better.  But with maybe 100 really good ones in the US, availability, supply and demand may play a major role.  Best to all on your myeloma journey.

Comment 2 -

Paul, your main point is right on, “find a multiple myeloma specialist which fits your requirements” if possible. However, there is no degree called Multiple Myeloma Cancer Specialist that I am aware of. 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-oncologists.
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 I have found some patients will get a consult with one of the best MM specialists and have the treatment in their local area using one of the 500 CIBMTR (Center for International Blood and Marrow Transplant Research) facilities. Not all hematologist/oncologists are skilled multiple myeloma specialists.



Just wanted to have a chance to put my two cents into the conversation.  Good luck and may God Bless your Cancer Journey.   For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1


3 Comments
suzierose link
6/7/2014 07:02:13 am

AWESOME feedback...very sorry you were censored.

Just know...when you are good not everyone who is LESS want's that known.

More importantly. PATIENTS should know that the BEACON is NOT patient centered!!

It is corporate centered and when you deviate from their revenue stream or what clinical centers that sponsor them want to promote you get censored/banned.

Go there. Learn what you can..but don't think they are PATIENT centered.

I too, made the mistake of thinking I could speak freely as a PATIENT..if you are an INFORMED patients who has view that are not supportive of their corporate sponsors..you get censored or banned.

That's all well and good for their corporate sponsors...but WE are PATIENTS
and it is NOT good for us.

WE neeed to consider ALL views plus/minuses to make the best decision for us.

The Myeloma BEACON does NOT allow that!!

Reply
Gary Petersen link
6/7/2014 07:25:40 am

suzierose, I was very confused as to what I was doing that might be somehow deserving of censorship, but your explanation makes it all make sense. They do have corporate sponsors, and they probably want to be sure they do not in any way promote any other non sponsored web site or facility.

Reply
suzierose link
6/8/2014 01:58:06 am

Believe it or not, your having a blog means you are competition for internet traffic, from patients and sponsors ..ergo..censorship.

I too was confused when that happened, because I did not realize the site considers themselves a BUSINESS. Nothing there is altruistically for patients. If it were Presenting pros & cons would not be about 'corporate' sponsors/bias, & result in censorship/banning.

Reply

Your comment will be posted after it is approved.


Leave a Reply.

    Author

    Gary R. Petersen
    [email protected]
    CLICK HERE for my myeloma journey

    ©2012 All Rights Reserved

    Categories

    All

    Archives

    January 2025
    August 2023
    March 2023
    October 2022
    February 2021
    October 2020
    September 2020
    August 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    August 2018
    June 2018
    May 2018
    April 2018
    January 2018
    November 2017
    October 2017
    September 2017
    August 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012

    RSS Feed

Web Hosting by iPage