The On Line Myeloma Support group hosted by Pat Killingsworth had a special guest who is a 14 year survivor. Her name is Paula Van Riper. She is the Assistant Dean at Rutgers University in New Jersey. As best as I can tell she has been constantly Ripping on the Reaper. You have to listen to her story, and she has had a remarkable myeloma journey if you CLICK HERE.
The Reaper Unemployment Line brought to you by the skilled multiple myeloma specialists of the world.
I often have said, and everyone is probably tired of hearing it, that a skilled multiple myeloma professional and a knowledgeable patient can extend your life expectancy. If you listen to Paula, she followed this formula to the letter. She had a first opinion, then a second opinion, and then a third opinion. She contacted the IMF(International Myeloma Foundation), became a group member, and then a group leader. She chose an excellent doctor and myeloma treatment center. Her doctor was none other than David S. Siegel, M.D., Ph.D., Chief of the Division of Multiple Myeloma at the John Theurer Cancer Center, Hackensack University Medical Center. Prior to this position he spent years at the UAMS center and worked hand in hand with Dr. Bart Barlogie. Back in 1999, UAMS was considered and still is one of the best myeloma centers in the world. So Paula chose well, and she needed to. She found out that she had the chromosome 13 deletion, at the time a high risk prognostic indicator.
High risk disease had an average life expectancy of 2 years or less. So if Paula is already a 14 year survivor, how did this happen? How has Paula been able to outrun the Reaper? First off her doctor gave her an auto-mini allo, or two transplants, because of her chromosome 13 deletion. Few if any facilities would have recommended this plan, many more likely to recommend an auto-auto. It was successful and gave her a drug free holiday of 5 years. Now, without this very aggressive treatment plan provided by a skilled myeloma professional, she would most likely not made it to 5 years. When she relapsed she went on RD (Revlimid and Dex) in 2007, and Revlimid was approved just 6 months prior to her treatment on 6/29/2006. She dodged bullet one.
In July of 2009 her disease progressed again and she went on VRD (Velcade, Revilmid, and Dex). In 2010 it progressed again and she went on a clinical trial for Pomalyst. Pomalyst was not approved until February of 2013. She relapsed again in late 2012, and Kypolis had just been approved in July of 2012. She went on KPD (Kypolis, Polmalyst, and Dex) in July of 2013. Paula has lived a blessed life, just keeping one step ahead of the Reaper, but without an exceptional doctor and a center that is heavily into clinical trials, she would never have been able to be so agile in the face of the hand that she was dealt. Paula, thank you for your story and what is definitely the definition of "TRUE GRIT".
Two other posts you might be interested in," How to Beat the Myeloma Odds", and" How to get your Myeloma PHD." You can read it if you click on POST1 or POST2.
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
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