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Multiple Myeloma - There is a New Kid in Town (mPatient's Jenny Ahistron) That is Out to Improve Myeloma Life Expectancy by Educating the Myeloma Patient Community!

8/11/2013

8 Comments

 
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It is often said that when you become a multiple myeloma patient you join a club that you wished you never belonged to, and then you find you are with some of the nicest and most caring people on the planet.  But it is these same people who have helped to move the life expectancy from just 9 months to over 10 years with a skilled myeloma professional.  Who are these people?  Of course the fine multiple myeloma professionals like Dr. Kyle, Dr. Barlogie, Dr. Berenson, Dr. Rajkumar, Dr. Durie and many others, but there is also a subset of people who have multiple myeloma who have made remarkable contributions.  

Susie Novis is the President of the International Myeloma Foundation and started the IMF because her husband had MM.  Pat Killingsworth, author and patient advocate  and MM survivor, is a spokesman for Myeloma Patient Community.  Kathy Giusti is the co founder of the Multiple Myeloma Research Foundation and has collected more than $195 million for research to improve survival and find the cure.  And there are many more who serve the myeloma patient community every day.  

I am also of the firm belief that being your own best advocate and educating yourself about this rare disease is one of the most important things you can do to insure a long life expectancy prognosis.  Your education can take many avenues, and one of the best ways is to talk to the best multiple myeloma professionals in the world to obtain their views on the best treatments and care.   This has been done very successfully by Cure Talk, who has provided a series called the Myeloma Cure Panel.  You can find a list of all the Cure Panel programs at the link  http://www.blogtalkradio.com/curepanel  Other Doctor interviews can be found at the IMF and Patient Power.

Recently, I was contacted by a myeloma patient by the name of Jenny Ahistron, who was diagnosed with MM and wanted to help to expand the scope of my work with survival rates.  In addition, she started a web site called mPatient.org, and wanted to interview and broadcast weekly a program  focusing on myeloma treatment and research from multiple myeloma specialists.  I had frankly thought that once a week was overly aggressive, but to my surprise she has been keeping up with this blinding schedule and put together some really great content.  You can see her web site and listen to all of the broadcasts to date, and she has also provided a print copy of the broadcast if you would rather have some bedtime reading.  

The broadcasts have so far included Dr. Robert Z. Orlowski, MD, PhD, M.D. Anderson Cancer Center, Dr. Guido Tricot, MD, PhD, Holden Cancer Center, University of Iowa, Dr. Don Benson, MD, PhD, The James Comprehensive Cancer Center, Ohio State University, Dr. C. Ola Landgren, MD, PhD, The National Cancer Institute, and Dr. Robert A. Kyle, MD, Mayo Clinic.  You can listen to the rebroadcast of these excellent interviews at http://www.mpatient.org/

Jenny is quite impressive for three reasons. First because she is so passionate about providing helpful information to the myeloma patient community, she is also an exceptional interviewer, and she has been able to recruit an excellent schedule of myeloma professionals.  I am so impressed with her work I have asked her to co-author a blog post on the best resources and ways to obtain the information we all need to obtain the best multiple myeloma life expectancy prognosis.  This article will be published within the next two weeks.

And as always, may God Bless your Myeloma Journey/ Gary Petersen



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

8 Comments
Paul Ahlstrom link
8/15/2013 06:59:39 am

Gary - Your blog made today's top story on The Multiple Myeloma Daily- http://paper.li/Myeloma_Doc/1310386431

Really appreciate what you are doing in tracking myeloma patient outcomes. Keep up the great work - Best Paul

Reply
Gary Petersen link
8/16/2013 02:24:04 am

Paul, Thank You! Jenny is doing a great service to the myeloma patient community. She has the same mind set as I do, and that is to SAVE LIFE, and together I am sure we will SAVE LIFE!! You chose well! Gary

Reply
Dana Holmes
8/15/2013 10:23:21 am

Hi Gary,
Thanks so much for highlighting this fantastic new radio talk and blog. I have become a faithful follower in just the few short weeks that Jenny has been conducting these amazing interviews. She also provides a transcript of the entire talk within a few days ! All you do for the MM community is so very much appreciated. Best to you . Dana

Reply
Gary Petersen link
8/16/2013 02:33:10 am

Dana, Thank you for your kind words. Jenny does a wonderful job of providing great content for the myeloma patient and caregiver community, and I just want more people to listen to these high quality broadcasts. Jenny and I will be putting together a blog post on the best ways to obtain your "Myeloma Education". Because with myeloma it is what you do not know or your local oncologist that is one of the biggest problems in myeloma care. Gary

Reply
Dana Holmes
9/23/2013 01:03:35 pm

Thanks again to both of you. Warm regards on this beautiful fall day. Dana

Michael Atwell
8/16/2013 03:09:02 am

I am a patient with MM being treated by Dr. Guido Tricot at the Univ. of Iowa. I am a firm believer in the power of positive thinking and an impenetrable mental attitude. I have the utmost confidence in Dr. Tricot and his staff. Further, I believe firmly that having a positive attitude is second only to the treatment. Thank you for your gallant efforts in helping to educate all of us by providing access to other doctors and hearing their protocol in fighting for a cure of Multiple Myeloma. Live Empowered & Abundant.

Reply
Gary Petersen link
8/27/2013 01:54:45 am

Michael, I also feel that positive thinking and faith are important, and have a very positive impact on stress reduction which has been proved to be very beneficial to healing. You also obviously did some great research yourself, because I am guessing that you didn't just stumble onto Dr. Tricot, who I believe is one of the very best MM specialists in the world! Good Luck and may God Bless your myeloma journey/Gary Petersen

Reply
Bruce link
5/8/2015 07:05:15 am

All mPatient broadcasts can now be found on Myeloma Crowd Radio located here: http://www.myelomacrowd.org/myeloma-crowd-radio/

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    Gary R. Petersen
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