The numbers are in and the results have been tabulated.  The multiple myeloma support group members live 2.2 times longer than the average multiple myeloma patient.  The National Cancer Institute, which published cancer survival statistics for many forms of cancer, publishes an average life expectancy of 4 years for multiple myeloma.  From the support groups who provided data, I  found the average life expectancy of 9.1 years.   Even thou there are some limitations in the accuracy of the study data,  I am of the firm belief that the thesis that active support group membership improves the survival rate is correct.   And the word "active" is important, in that there can be little value to the individual if they are on the membership list and never go to the meetings or ever respond to emails.  Therefore active members were considered those who attended half of the meetings of more.

So what is the chicken and the egg thing anyway?  All of the groups in the study (8 in total) were at least at the average life expectancy, however some were much, much better than the average.  I had also asked each support group leader if they were close to a multiple myeloma center of excellence.  I wanted to know if treatment at a center of excellence might be a correlating factor as well.  One in particular was easy to analyze in that almost all of the 100 members of the Northern New Jersey Support Group were treated at the John Theurer Cancer Center at the Hackensack University Medical Center, and they had the best survival rate by a huge margin.  So was it the chicken or the egg or both?  I have asked the division chiefs Dr. Siegel and Dr. Vesole of the myeloma program at Hackensack for their survival data, and hope to receive it in the future.  However, I think it is almost moot, because their support group results shout out success, and again support my other thesis, that having a multiple myeloma specialist on your team is essential to your long term survival.  

Good luck and may God Bless all who have to be on this journey/ Gary Petersen editor@myelomasurvival.com

For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

 


Comments

Hector "uciano
01/17/2013 3:09pm

Are there support groups in Puerto Rico?

Reply
01/19/2013 7:57pm

Hector, I was not able to find a IMF or LLS support group for Puerto Rico. I did find that Moffitt's Dr. Melissa Alsina, a very skilled Multiple Myeloma specialist was going to be part of the attached unit of Moffitt in Purto Rico. If I lived in Puerto Rico, she would definitely be my first choice. The link is: http://www.insidemoffitt.com/bmt-clinic-in-puerto-rico.htm Hector Good Luck and may God Bless your Myeloma journey/Gary Petersen

Moffitt's Puerto Rico BMT Clinic
Metro Medical Center
Carr #2 KM 12.3 Urb. Hermanas Davilas
Torre B, 7th Floor
Bayamon, PR 00959
Please call (787) 395-7085 to schedule an appointment.

Reply
Tarolyn Fulkerson
04/24/2013 12:33am

I am trying to help my friend with Multiple Myeloma. She lives in Lansing, MI. Do you know where the closest center of Excellence is? Support Group?

Reply
04/24/2013 8:43am

Tareolyn, the closest center is the University of Michigan Comprehensive Cancer Center in Ann Arbor. I do not know the survival statistics there, and my first choice if it were me would be Dr. Hari of the Medical College of Wisconsin in Milwaukee, or my second choice Dr. Andrzej Jakubowiak at the University of Chicago Medical Center. He used to head up the program at Michigan. There are 4 support groups Michigan and the closest is either Ann Arbor or Grand Rapids. The link to these groups is: http://myeloma.org/SupportGroupRegion.action?tabId=6&queryPageId=7&countryId=1®ionId=55

You are obviously a good friend and may God Bless your friends myeloma journey/Gary

Reply
Tarolyn Fulkerson
04/24/2013 11:06am

Just wanted to say "Thank You", Gary. This is very helpful, and I am passing this on right now.

You are a gem.
Tarolyn

norm bailey
05/12/2013 11:09am

March 22 my wife Marilyn was diagnosed with smoldering myeloma.
We are in NW PA and have been to UPMC but not aware of a myeloma specialist. Help??

Reply
05/13/2013 8:41am

Norm, so sorry to hear about your wife Marilyn's recent diagnosis. The UPMC facility will be a good place to have your treatment, but you may want to get a second opinion. They used to have a well know myeloma specialist by the name of Dr. Roodman, but he has moved on to head Indiana University's myeloma program. I have a list of specialists at the link: http://www.myelomasurvival.com/myeloma-specialists-listing.html

Convenient to you is Ed Staudtmaer, MD - Penn Medicine, Philadelphia, PA, or Craig Hofmeister MD - The James Cancer Center, Ohio State University - Columbus,OH

You can also get some hints on getting a second opinion if you look at the link: http://www.myelomasurvival.com/1/post/2012/04/next-step-how-to-get-a-second-opinion-for-multiple-myeloma-treatment.html

If your wife is low risk smoldering myeloma, there is a good chance that she may not need treatment for a long long time, Some people can smolder for 10 or 20 years or longer. High risk smoldering myeloma is another subject, and and whether to treat early or not is now being debated by the myeloma specialist.

Your are doing the right things, being your own best advocate, and finding a skilled multiple myeloma specialist for your team.

Good Luck and may God Bless your families myeloma journey.

Reply
01/10/2014 4:23pm

Gary do you know the closest mm specialist in the Hartford ct area or should I go to Boston .

Reply
01/11/2014 11:00am

Sharon, I do not know of someone in Hartford. I would go to Dana Farber in Boston for my treatment plan and transplants(if required), and then have the ongoing maintenance and testing at Yale in New Haven. I find Dr. Richardson of Dana Farber to be exceptional, and you could not go wrong under his care. Best Regards and may God Bless your myeloma journey. Gary

Reply
09/02/2014 11:38am

Your post is a great help for me to understand about myeloma. I was looking for this information but get it here in your post. You are good to describe your views on this and a great insight you have written here for us.

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