I was honored to co-host the September 25th  Myeloma Cure Panel broadcast by Dr. Parameswaran Hari of the Medical College of Wisconsin.  You can hear the broadcast at the following link: http://www.blogtalkradio.com/curepanel/2012/09/25/the-myeloma-cure-panel-talk-show   The topic of the broadcast was Mulitple Myeloma Disease Progression, and the treatment of relapse, refractory, and high risk myeloma.  To say he is a skilled myeloma specialist is an understatement, because he has already provided  the best 2 and 3 year survival rates yet published on www.myelomasurvival.com.  So to believe that he was going to be a wonderful feature panelist and  provide a great amount of relevant information about this topic was no surprise.  So what was the surprise? 

Surprise!  He  mentioned the "BIG C" word, CURE!  For the last six-and-one-half years of my myeloma journey I have seldom if ever heard the word myeloma and cure used in the same sentence.  For a long time the only doctor in the world who professed to a cure was Dr. Bart Barlogie of UAMS(University of Arkansas for Medical Sciences).   However, during Dr. Hari's discussion he stated: "There are 10 to 15% of patients treated in the last decade who for 10 to 15 years have never gone on to progression after achieving their first remission", and by definition this is cure.  In addition, he further stated that with the treatments currently available, there is a hope that we will move this number to a cure rate of 40% in the next decade.  Isn't that great!!  Because in order to have 40% of the patients living over 10 to 15 years without progression  in the next decade, they must be in treatment as we speak.  That is you and me, right now!!!
 
Pat Killingsworth, has a blog and is an author or three myeloma books,  and has an excellent understanding of myeloma and treatement.  As a member of the Myeloma Cure Panel team he asked some very informed questions about smoldering myeloma and the risks of early treatment  Dr. Hari provided his perspective on this subject.  If this subject is of interest, you can see Pat's perspective  and an excellent discussion at the link:   http://multiplemyelomablog.com/2012/09/smoldering-myeloma-therapy-debate.html

Please take the time to listen to Dr. Hari and the cure panelists.  It looks like there is more and more reason to see the light at the end of the tunnel, and more reason for HOPE!!   Thank you to Dr. Hari and CureTalk for this excellent patient to myeloma specialist forum. 

Best Regards and may God Bless your myeloma journey!/ Gary Petersen [email protected]

Over the months I have been in contact with many of the worlds best multiple myeloma specialists, and many have committed to providing survival rate statistics to this web site.  First and foremost, I would like to provide my sincere thanks to all who have shown interest in this program, offered me encouragement, and  were kind enough to introduce me to other of their multiple myeloma colleagues. In addition, I have also found that there is a lot of effort required in working this project into busy schedules, along with operating a thriving practice, meeting professional obligations, and working through the data processing maze that we often find in any business.  So I am careful to always be thankful for their continued commitment,  and have let them all know that I will be patiently awaiting their survival data, and occasionally call to check on the status.  I did, however want to let my readers know who they can expect to see in the near future.  

I have done some due diligence on all of these myeloma specialists and they all meet or exceed my expectations of what is required to be a multiple myeloma specialist.  It is therefore my believe that their survival rate and life expectancy performance will be greater than the National Cancer Institutes averages.  I have found that all of the doctors that have committed to providing survival data and then later provided this data have all exceeded the National Cancer Institutes SEER averages. I  therefore believe this group will be no different. The survival rate statistic that you can expect to see are from the following myeloma specialists and hospitals.

Edward Faber, Jr., MD - Assistant Professor, Internal Medicine - University of Nebraska Medical Center, Omaha, NE 

Rafael Fonseca MD -Chair, Department of Medicine - Mayo Clinic, Scottsdale, Arizona 

Craig Hofmeister MD - Assistant professor of medicine  - The James Cancer Center, Ohio State University - Columbus,OH

Asher Chanan-Khan, MD - Chair, Division of Hematology & Oncology  - Mayo Clinic, Jacksonville, FL 

Sagar Lonial MD -  Professor & Vice Chair of Clinical Affairs Department of Hematology and Medical Oncology - Winship Cancer Institute, Emory University, Atlanta, GA

Jan S Moreb, MD - Professor of Medicine - Clinical Director, Hematologic Malignancies - Shands at the University of Florida, Gainsville, FL

Attaya Suvannasankha, MD -  Assistant Professor - Simon Cancer Center, Indiana University School of Medicine, Indianapolis, IN

David Siegel, MD and David Vesole, MD - Multiple Myeloma Division Chiefs - John Theurer Cancer Center at Hackensack University Medical Center, Hackensack, NJ

Ravi Vij, MD - Medical oncologist, bone marrow transplant specialist - Washington University School of Medicine - St. Louis,MO


In addition, I have been in contact with Paul Richardson, MD of the Dana Farber Cancer Institute in Boston, and hope to be able to add them to the list as well.  I have made other requests for participation which are still pending,  and continue to get recommendations from myeloma patients, care givers, and myeloma specialists.   I have found  that as time goes on the momentum for this project continues to build.  Thanks to all who have been supportive of this effort. 

Because together we can "SAVE LIFE"./ Gary Petersen [email protected] 

This Myeloma Cure Panel discussion is now completed and I believe is a can't miss opportunity for some really great information and interaction with one of the most skill myeloma specialist is the world. The link of the broadcast is now available at:http://www.blogtalkradio.com/curepanel/2012/09/25/the-myeloma-cure-panel-talk-show You are 7 times more likely to survive 3 years under his care than in the care of the average facility reporting to the National Cancer Institute.

I am pleased to announce that Dr. Parameswaran Hari will be the feature panelist on a Cure Panel broadcast on September 25, 2012 @ 4:30pm EST.  The focus of the discussion will be multiple myeloma disease progression, and the treatments for relapsed, refractory, and high risk multiple myeloma.  You can sign up for this presentation at the following link:  http://trialx.com/curetalk/panels/myeloma-cure-panel-on-25th-september-2012-430-pm-hurry-and-register/ 

Multiple myeloma becomes more and more resistant with continued treatment, and high risk disease is by definition difficult to find effective treatment.   Therefore, relapsed, refractory  and high risk disease are the elements that most impact your long term life expectancy.  They are also often the signal that your disease has returned, and this is one thing that all myeloma patients and caregivers fear!

Dr. Hari is the Section Head and Clinical Director at the Medical College of Wisconsin.  He has the best 2 and 3 year myeloma survival rates yet presented on www.myelomasurvival.com. You are 7.2 times more likely to survive for 3 years in his care than in the care of the average facility that reports  their data to the National Cancer Institutes national SEER registry.   He was voted to the nation's Best Doctors in 2011-2012, and is the President of the national organization CIBMTR(Center for International Blood and Marrow Transplant Research)Transplant Hospitals.  His knowledge and incites will be invaluable to the myeloma patient community.  Unfortunately, there will be only 50 callers allowed into the broadcast.  So please hurry to be included live on the panel and ask Dr. Hari your multiple myeloma questions.    

Dr. Berenson(Institute for Myeloma and Bone Cancer Research) in LA has provided the best 5 year survival rate yet reported on www.myeomasurvival.com.  He sent this information to me a some time ago, and the fact that his rate was 89.7% versus the National Cancer Institutes(SEER) five year rate of 40.9% is truly remarkable.  You are 5.7 times more likely to survive in his care than in the care of the average facility that reports to the National Cancer Institute. So what did I miss?

I missed a key point in the information that was presented.  It was not the fact that the average life expectancy is 9.75 years vs. the national average of 4 years, it is the fact that almost 40% of his patients are projected to be alive after 16 years.  Their treatment was started in the era prior to all the new novel drugs and the national average life expectancy was about 2.5 years. Why is this significant?  The National Cancer Institutes data for 16 year survival is now 8.2%.  So if you were under Dr. Berenson's care 16 years ago, you were 4.9 times more likely to survive.  How did I let that fact slip by?  I saw his graph again recently when I went to file it away and had an aha moment, and felt compelled to share it with the myeloma patient community.  

One of the elements that I have noted in my study of myeloma is that the longer you  live as a myeloma patient, the longer you will continue to live.  This is because the probability of death goes down for each year that you survive.  Another key point is that as an average American, if you reach 70 years of age, your life expectancy is 16 more years or to the age  of 86.   This means that 50% live longer and 50% do not.  The average age of a myeloma patient is 70.  It is therefore almost beyond belief to think that roughly 40% of Berenson's patients are projected to survive nearly 16 years.  Dr. Berenson uses the minimum amount of treatment to obtain control, and has been know for this minimalist/quality of life approach.  What I have found is that if you have a skilled myeloma specialist on your team, their methods might be vastly different, but the best will show excellent performance based results. The graph and information provided by IMBCR is noted below. 

May God Bless your Myeloma journey and as always together we can "SAVE LIFE"/ Gary Petersen [email protected]

I have just completed a segment on www.myelomasurvial.com that focuses on the higher risk elements of multiple myeloma.  You can find it at the link:  http://www.myelomasurvival.com/higher-risk-myeloma.html  It provided information on Relasped, Refractory, and High Risk Multiple Myeloma.     I believe that this sequence is the progression of risk in multiple myeloma.  The first two are  the stages of progression in multiple myeloma.   The last is high risk which is the type of myeloma which is by far the most difficult to treat, and as a result has historically been the form that has the lowest life expectancy.  

One of questions I ask in regard to these ever increasing risk factors is as follows.  What are the 3 most important things that are required to insure your long term survival?  SPECIALIST! SPECIALIST! SPECIALIST!!!  As the disease progresses, it becomes more and more important to have a myeloma specialist on your team.  They are the only ones with the expertise to provide skilled guidance for your care, whether it be as your specialist or the specialist with the second opinion.  I hope that you find this new section of the web site of value in your myeloma journey.