Cure Talk Interviews Gary Petersen, Editor myelomasurvial.com
Gary Petersen is a multiple myeloma survivor and editor of myeloma site that provides survival rates from various multiple myeloma specialist hospitals and doctors. The main aim of Gary’s site is to move the survival rate from 4 years to 10 years and he strongly advocates that getting a skilled myeloma specialist on your team with performance-based success is the key to longer life expectancy.
Gary is part of the panel on Myeloma Cure Panel, a series of teleconference calls where doctors, patients, caregivers, come together to share information. Gary co-hosted the Cure Panel talk show which had Dr. Parameswaran Hari as the myeloma expert and would be hosting more panels in the months ahead.
It was great of Gary to agree to be interviewed over email where he shares his myeloma story with us. Enjoy the interview.
Me: Gary, we would like to know your myeloma story. Please share it with us.
Gary: Priya, thank you for the opportunity to share my story. Like many myeloma patients at the time of diagnosis, I had a wonderful life, with a great wife, two wonderful children. I was a successful executive, and had a flight scheduled to visit my new granddaughter for the first time. Two days prior to this, I was doing yard work and felt tired and drained and later that day took my blood pressure at a unit located at a local pharmacy. It was high for the first time in my life, and my wife cajoled me to go to my local doctor. My doctor said I was probably just a little dehydrated, but blood tests had not been done for a year so let’s just do it. The day after my blood test I am ready to go see my granddaughter, and the doctor called and said “Gary, get to the emergency room immediately because you are in kidney failure!” This is how our (my families) journey began.
I was saved by the skill of the professionals of the Mayo Clinic system, and with two stem cell transplants at UAMS (University of Arkansas for Medical Sciences). How did I get from Mayo, Jacksonville to UAMS? My daughters and I searched the internet to find any information we could on the best programs in the world. There was little data, but I did find that Mayo had published a 3-year life expectancy, and UAMS had a 7-year life expectancy for multiple myeloma. I chose to get the rest of my treatment at UAMS. It has served me well, in that I am now over 6 years in CR (Complete Response). At the time, Dr. Bart Barlogie was the only doctor who was saying that his program could be curative.
I still remember reading a publication from UAMS that read something like this: “Of the 950 patients with dialysis dependent kidney failure, the average life expectancy is 3 MONTHS.” THAT WAS ME! My oldest daughter, an editor on the medical desk at the Wall Street Journal, had read the same thing and made sure the entire family, including the new baby, got to the Mayo Emergency Room so they could say their last goodbyes. Months later in my myeloma journey, I was visiting my youngest daughter and new granddaughter, was tired, and had a fever. Two hours later, I was at a Janesville, Wisconsin Emergency Room and had gone septic. If you go septic, I was told that you have only a 10 to15% chance of survival. In addition, I was on dialysis and my neurologist said I would never get off dialysis because of the irreparable damage to my kidneys, but my kidneys have improved to the point where I am now off dialysis.
I tell you these elements of my myeloma journey because I often wonder how I could have been so lucky as to have dodged so many bullets. I am not lucky, and I am certainly not fast enough to dodge bullets. But with great care, I have beat the odds on several occasions. I believe I am here for a purpose, and that those bullets were being flicked out of the way! Divine Intervention? If not that, then I have no clue why God has kept me in the game!
Me: Are you currently on any kind of medication?
Gary: For the last eight months, I have been off all chemotherapy drugs. Because of the disease and effects of chemo, I do take medications for neuropathy, prevention of shingles, and IVIG because of anemia. I had been on a maintenance regiment of VTd, or Velcade, Thalidomide, and dexamethasone for four years. At my last checkup, my doctor had said that maintenance was over, and I would be chemo-free. Dr. Bart Barlogie also said that he felt that the myeloma would not come back, but I almost fear saying this because I have heard of at least one of his patients who lost CR after 5 years, and that he once was the only doctor in the world who said the CURE word. However, I have recently heard that other doctors, like Dr. Ravi Vij of Washington University and Dr. Parameswaran Hari of the Medical College of Wisconsin have indicated that evidence is now surfacing that 10 to 15% of patients have been effectively cured.
Me: What according to you is the most interesting development in the field of multiple myeloma research that you feel is a step in the right direction?
Gary: There are a couple of developments, the first of which is the great clinical trials that have been completed. They have provided myeloma specialists with tools that are far more effective. New drugs are great, but what impresses me the most are the current developments of how to best use the existing drugs in combination for induction, transplant, and maintenance. VRd or the combination of Velcade, Revlimid, and dexamethasone as induction therapy with a 100% response rate is a prime example. If you look at these trials, they are the first line in the development of performance measures for treatment comparisons. The work of groups like the MMRC, IMF, and various international oncology groups are so important in providing the funding and resources to conduct these trials. The MMRC alone collected over $160 million dollars to fund this research, and as I know from business, “you will get the results you want if you provide a financial incentive.” And research funding grants are a great incentive to the research scientists!
The second and maybe most important development is related to the fact that multiple myeloma is curable. Studies are now available that indicate that this previously incurable disease has now shown evidence of curability in 10 to 15% of patients. They are living 10 to 15 years with no evidence of disease progression. Dr. Parameswaran Hari in his Cure Panel broadcast (available on the CureTalk website) indicated, he believes that within the next decade, 40% of patients will be cured. However, what is great about this for newly diagnosed patients is that in order to have 40% of patients to be cured in 10 years, they have to currently be in treatment. How cool is that!!!
Me: Your site, myelomasurvial.com talks about survival statistics of various institutions dealing with myeloma treatment. What was your inspiration to start a site like this, rather than just a chronicle of your myeloma story?
Gary: Early on in my research of multiple myeloma treatment, I would do a Google search like “multiple myeloma survival rates,” and I would change it by putting in hospital names like Mayo, Dana Farber, M.D. Anderson, ad infinitum. The only thing that would come up were clinical trials, National Cancer Institute’s (SEER) survival rates, and some rates for Mayo and for UAMS. That was it! Having an operations engineering and business management background, I was shocked that performance based information was not available to the myeloma patient community.
A well-respected Senior Vice President of a multibillion dollar company, and my boss, once said, “You cannot manage what you do not measure!” From my operations engineering background, you use measurements to know where you are and to gauge the success of programs and improvements that you initiate. Total quality management has improved products for decades by using measurements to gauge improvement, so why not hospitals and their multiple myeloma programs?
But the real impetus was being in an IMF support group and watching people, my friends, die too soon. Some of them which I knew were getting inadequate care. In addition, places like Little Rock were showing survival rates of seven years whereas the National Cancer Institute indicated a survival of 33 months. I felt compelled to find a way to bridge the gap between the “What is (33months)” to the “What could be (7years)”. Yes, I was on a mission, a mission to SAVE LIFE!
Me: What is the objective of your site?
Gary: I think there are effectively two key missions. The first is to provide a resource for the myeloma patient community to find performance-based data on survival by hospital and doctors. Currently the National Cancer Institute’s (USA) survival rate is 4 years, and that reported by United Kingdom, which has a National Health Service, reports a two-and-one-half year survival rate. However, we now see from many of the myeloma specialists that they have life expectancies of 10 years.
Their survival rates and life expectancies are now being reported on myelomasurvival.com. My objective is to allow patients to find doctors that will give them these extra six years of life! If we can do this, we would be able to save 480,000 years of LIFE. This comes from the fact that 20,000 myeloma patients are diagnosed in the US each year and the average life expectancy is 4 years. It therefore follows that there are 80,000 patients who could all live an extra six years each!
The second objective is to highlight the best myeloma programs and clinical trial results in the world, so that those programs and clinical trial results can be the new standards of excellence that other programs can emulate. One thing you will find is that this disease is so complex that it requires the skill of a myeloma specialist, and the data would confirm this. The myeloma specialist eats, drinks, and dreams this disease, and because he comes in contact and treats so many patients, he knows exactly what to do, and has seen most every eventuality. In effect, he knows so much he takes it for granted and most other hematology oncologists might be seeing only one or two patients a year and would not be familiar with all of the nuances of this disease. Do you know what the three most important things you can do as a myeloma patient to insure a long life expectancy? SPECIALIST! SPECIALIST! SPECIALIST!!!
Me: What are some of your on-going projects?
Gary: Oh no, not another one of these, what are you going to do when you grow up questions! I can only say I have been working on that question for decades, so I will get back to you when I finally figure it out.
Me: Do you have a message for our readers?
Gary: My message is quite simple, and it is that myeloma is no longer a death sentence! There is HOPE! If you find a skilled myeloma specialist as a member of your team, you can outlive the life expectancy numbers that are published. Therefore, if newly diagnosed, you will have 10 more years of life, and in this timeframe, you can almost bank on a cure or at least no more than a troublesome chronic disease. If you look at the most recent myeloma cure panel that was assembled by CureTalk, we all have a renowned myeloma specialist on our team. When it comes to your life, are you going to leave it in the hands of anyone other than a skilled myeloma specialist? Would you let a general surgeon do brain surgery on you? NO! Why not the same answer for multiple myeloma?
Priya, thank you and the CureTalk team so much for all that you do and continue to do for the multiple myeloma patient community.
Thank you so much, Gary. It is a pleasure to connect with you.