One of the fundamental understandings of multiple myeloma is that the younger patients do have a better life expectancy than the older patients.  This has been thought to be because the younger patients have stronger immune systems to begin with, and do not have the co-morbities (other illnesses) that come with age.  In addition, they are generally more able to take the trauma of chemotherapy and transplant.  It is common knowledge, but I have not been able to find the data anywhere that quantifies the difference.  That is until recently.  

In my research I came across a study by the United Kingdom's National Health Service.  The study data can be found at the following link: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/myeloma/survival/  Because the UK has a national health system, they have some of the most robust data for most any medical condition.  The reporting of survival data is built into the system.  Whereas, we in the USA have to rely on our National Cancer Institute to obtain information, or for other private organizations like the CIBMTR (Center for International Blood and Marrow Transplant Research) to obtain this multiple myeloma data.   I therefore think that the UK's data is by definition some of the most reliable information in the world.    

There is good and bad news in their survival data.  The good news is that because it is so complete, it provides superb age related survival data.  The bad news is that the most recent survival numbers show an average 5 year life expectancy of just 37.1%, as compared to the USA's National Cancer Institutes 5 year survival of 44.5%.  One difference is that the UK data is for the years 2005 thru 2009, whereas the USA data is from 2004, but this would favor the UK data.    The 20% difference could be explained by several factors.  The USA has had earlier approval of some of the newer novel drugs, different demographics, or because our data only represents 30% of the population of the USA and the UK has a 100% sample.  However, what this does confirm is that the average survival rates of the leading myeloma specialists is 2 to 3 times better that these averages.  Which means the answer to the question; "How do you insure the longest life expectancy?" remains the same, and that is you need to have a skilled multiple myeloma specialist on your team.  

Now what does the data show about survival by age?  Below is the graph for the various age groups.  Like I mentioned previously, the average 5 year life expectancy is 37.1%.  I therefore believe you can make the case that if you are 65 years of age, your 5 year  life expectancy would be approximately 48.3%.  So you would be 1.2 times more likely to survive than the average myeloma patient.  A 55 year old myeloma patient would have a 5 year survival rate of approximately 55.8%, or be 1.4 times more likely to survive.  The last category, I will call the" less than 40 average" would be approximately 67.8%, or  2.0 times more likely to survive.  So to the younger patient of  around 40 years of age, you can expect to beat the averages by a fairly good margin.  For example if the current average by USA National Cancer Institute is 4 years and you have twice the life expectancy of the average, you could expect to live 8 years.  And if you are in the care of a skilled myeloma specialist whose average patient lives10 years or more, then you should hopefully outlive the cure.

As always, good luck and may God Bless your myeloma journey/ Gary Petersen [email protected] 

 

Figure 3.1: Myeloma (C90), Five-Year Relative Survival Rates by Age, England, 2005-2009

The Cure vs. Control debate has become something of a lighting rod, and has resulted in heated discussions in many forums!  But in reality it may just be a myeloma patients preference.   Just a choice between two excellent treatment alternatives.  This is because the outcomes are really exactly the same.  WHAT you say?

First and foremost what is the objective for each of these treatment methods?  On the side of control, the objective is to be able to provide a treatment plan that provides control of the disease over time.  This can be the sequential use of drugs to maintain a manageable level of the disease, with the next available treatment ready for use at relapse.  It can also include up front or delayed use of autologous stem cell transplant, with many treatment options available at relapse.  The preferred result is to have the patient die of something that is not myeloma related.  The objective of cure is usually to provide either an allogeneic transplant or a very aggressive treatment plan that includes most available drugs plus the autologous transplant(maybe dual), consolidation, and maintenance to eliminate the disease or put it back into a MGUS stage.   The preferred result is the same, which is to  have the patient die of something that is not myeloma related.  

There of course is the question of Quality of Life, but isn't this a question of preference.  Do you want to go the control route, and have the constant fear of relapse hanging over your head, or do you want to take the up front aggressive treatment with transplant and maintenance drugs for 3 years to achieve cure.  

But how can anyone determine success?  What is the measure of success?  How can you know if an patient  has met the  definition of  "dying from something that is not myeloma related".  If a myeloma patient dies from a heart attack, how can anyone know that the myeloma or the myeloma treatments did not have some impact in the outcome.  The devils advocate could have a field day on either side of cure or control.  So what would be a good surrogate for success.   I believe that if a patient outlives the average American of the same age, this would be a fair measurement of success.   The average American at age 70 (this is the average age of myeloma patients), will on average live an additional 16 years.  This is based on the Social Security Death Rate table.  If a 70 year old myeloma patient lives to age 86 then I would say he has met this definition of success.   This same analysis can be accomplished for any myeloma patient no matter what the age. 

A recent debate on the Forum of the Myeloma Beacon questions the high number of patients that have died from other unknown causes in the Total Therapy 2 (TT2) program which was conducted by the Arkansas UAMS program.  It is surmised that because the other unknown causes of death is 29% of the total deaths, that this means that the performance of TT2 is  not very good, and the risk of death is so great that this method is just too risky to try.  But how does it in fact line up to our new definition of success. One caveat is that I can not find a listing of the average age of the patients in TT2, so I am assuming that in this population of 668 patients that they represent a fair approximation of the average myeloma patients age. The table of deaths for the UAMS TT2 multiple myeloma protocol that is referenced here has a 12 year time-frame and is as follows:

Myeloma-related mortality - 163/668
Mortality causes unknown - 89/668
Treatment-related mortality - 51/668
Total deaths - 303/668 = 45.3%

Therefore, the death rate for TT2 for this 12 year period is 45.3% of the patients, however if you are just an average run of the mill American at age 70 (which is the average age of a myeloma patient) the death rate after 12 years is 45.0% based on these same actuarial tables. So no matter how you slice the total deaths into this or that bucket, the total number of deaths are at the definition of CURE as I defined it above. What is crazy about this is that TT3 has better results and probably shows a survival for patients greater than that for the average American.

One other interesting point is that this kind of performance is being reported in other myeloma specialists data.  Dr. Berenson's, a proponent of control, is close to our definition of success, and I believe there will be many more that will show similar results in the future. I believe there is more reason for HOPE now than there ever has been. 

Best Regards/Gary Petersen [email protected]

Dr. Berenson will be the featured Myeloma Cure Talk Panel member on this November 29th, 2012 @ 6:00 PM EST broadcast.  You can sign up for the broadcast at the following link: http://trialx.com/curetalk/panels/myeloma-cure-panel-with-dr-james-berenson-on-29-november-2012-6pm-est/

The discussion will cover Dr. Berenson's multiple myeloma treatment philosophy and preferred treatment protocols.  He has been known for protocols that do not include stem cell transplantation.

I am honored to co host this panel discussion and to have such a skilled multiple myeloma specialist as the featured Panel member for this Myeloma Cure Panel Broadcast.  Dr. Berenson'sNon Transplant Myeloma treatment program at the IMBCR(Institute for Myeloma & Bone Cancer Research) is located in West Hollywood, California and has shown excellent results over time.  His 5 year multiple myeloma survival rate is the best yet recorded on www.myelomasurvival.com.   In addition, his survival rate for 16 years is projected to approach 40%, whereas the average American at age 70(the average age of a myeloma patient) has a 16 year survival rate of 50%. What this means is than some 16 years ago, without the benefit of the new novel drugs (Velcade, Revlimid, and Thalidomide), Dr. Berenson has provided a life expectancy close to that of the Average American.  That certainly begs the question, "What will be his results 16 years from now with the availability of the new novel drugs?"  Does this mean his patients may outlive the average American one day?   A discussion of these results can be found at the link:  http://www.myelomasurvival.com/3/post/2012/09/dr-berenson-has-the-best-5-year-myeloma-survival-rate-on-wwwmyelomasurvivalcom-but-theres-more.html

There is a continuum of treatment protocols from the very aggressive Total Therapy  "More is Cure" approach of Dr. Barlogie(UAMS), and Dr. Tricot(U of Iowa) to the sequential minimalist "Less is Best" or "Quality of Life"  approach of Dr. Berenson, and Dr. Asher Chanan-Kahn(Mayo-Jacksonville).   In the middle of this continuum are the majority of the myeloma treatment programs which include the excellent programs of Dr. Hari (Medical College of Wisconsin), and Dr. Rajkumar(Mayo).

A bio for Dr. Berenson can be seen at the following link:  http://www.berensononcology.com/

I think this is a can't miss opportunity to interact with one of the worlds best multiple myeloma specialists. Please sign up for this interactive broadcast, where you will be able to ask questions of Dr. Berenson, or any of the panel members.  

Best Regards and may God Bless your Myeloma Journey/ Gary Petersen [email protected]

What is this guy crazy?  How can he even think that it might not matter?  Of course it matters!  But does it really?  I will be presenting this very question at the October 29th, Myeloma Cure Panel co-hosted by Pat Killingworth.  You can sign up for the program at the following link :http://trialx.com/curetalk/panels/myeloma-cure-panel-29th-october-2012-7pm-est-on-cure-vs-control-co-host-pat-killingsworth/  I will be outlining this argument in more detail on this site in the days ahead, however, make sure you sign up for this interactive broadcast so you can participate in the dialogue.  

As always, may God Bless your myeloma journey!/ [email protected]

Dr. Edward Faber Jr. has recently submitted his survival statistics to www.myelomasurvival.com.  I would like to take this opportunity to welcome him as another exceptional addition to our listing of myeloma specialists. 

For patients under the care of Dr. Faber, you are 5.9 times more likely to survive 2 years and 1.6 times more likely to survive 4 years, as compared to the average SEER facility.  They have provided their transplant experience over the past 5 years, and report a 2 year survival rate of 93.9%* versus the SEER data of  64.1%.   They further report their 4 year survival rate of 67.8%* versus the SEER survival rate of 49.2%.   Therefore, receiving care through Dr. Faber at the University of Nebraska Medical Center is another excellent find for multiple myeloma patients in the Midwest. 

Since maintenance therapy with lenalidomide has only recently been adopted, the reported survival rates includes patient populations which may or may not receive maintenance lenalidomide therapy.  Dr. Faber also revealed in his analysis that they are actively following the outcomes of the patients on lenalidomide maintenance in order to determine the impact of lenaldomide mainteance on these reported survival rates, especially the 4 to 5 year survival rate, which of course we all hope will improve outcomes. Dr. Faber included a very impressive bio with his information and I have included it below.

Edward A. Faber Jr., D.O., M.S., Short Biosketch:  

Assistant Professor of Internal Medicine in the Hematology/Oncology Division at the University of Nebraska Medical Center since July 2009, after completing hematology / oncology fellowship training at Michigan State University. 

Dr. Faber is a NCCN panel member for multiple myeloma, amyloidosis and Waldenstrom’s Macroglobulinemia.  He recently has been appointed as an advisory panelist for Amyloidosis on ASCO’s Cancer.Net, Editorial Board’s Lymphoma Panel, as well as the Association of Community Cancer Centers (ACCC) Multiple Myeloma Advisory Committee.  Dr. Faber also participates in the following national committees:  Alliance for Clinical Trials in Oncology [CALGB] Myeloma Committee, Alliance for Clinical Trials in Oncology [CALGB] Transplant Committee, BMT CTN Myeloma Working Group, CIBMTR Myeloma Working Group.  He was recently appointed as Director of UNMC’s M1/M2 Hematology/Oncology Core Course.

He is a principal investigator for all phases of clinical trials, while collaborating with cooperative groups such as Alliance, ECOG, CALGB and BMT CTN, as well as investigator initiated clinical trials.  He has a special interest in clinical trials involving early, novel therapies for relapsed / refractory and high risk multiple myeloma.  He also pursues translational research by applying nanomedicine to relapsed / refractory myeloma, with his current project involving the use of Pluronic polymers to augment the efficicacy of proteosome inhibitors.

Again we welcome Dr. Faber to the www.myelomasurvival.com community of skilled multiple myeloma specialists.


Best Regards and "Together we will SAVE LIFE"/ Gary Petersen [email protected]

Priya Menon the Scientic Media Editor for web site Cure Talk,  recently conducted an interview with me and published it at the following  link: http://trialx.com/curetalk/2012/10/cure-talk-interviews-gary-petersen-editor-myelomasurvial-com/
I was quite honored to be asked to participate in their interview series, and impressed with the quality of questions she presented.   There were three questions that I felt were exceptional and required some quite reflection.  I would like to repeat them here with my responses.

Priya: 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!!!

Priya: 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!

Priya: 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!!!


I truly enjoy being a part of the Myeloma Cure Panel, and honored to be part of their interview series as well.  I hope you enjoy this post and find time to read the entire interview at:  http://trialx.com/curetalk/2012/10/cure-talk-interviews-gary-petersen-editor-myelomasurvial-com/   And as always "Together we can SAVE LIFE"/ Gary Petersen [email protected]