Blog Posts

Do Multiple Myeloma Survival Rates Finally Approach Cure with Monoclonal Antibodies?? As Discussed by Dr. Asher Chanan-Kahn of Mayo Clinic

11/19/2013

Every time we get a new drug in the multiple myeloma treatment arsenal, the life expectancy and survival rates make a jump upward. We currently have alkylating agents(melphalan), immunomodulatory drugs(Thalamid), proteasome inhibitors(Velcade), and steroids(dexamethasone). Now there is a new class of drugs called Monoclonal Antibodies(Daratumumab), which uses the body's own immune system to attack the myeloma. It is this new class of drugs which Dr. Asher Chanan-Khan of Mayo Clinic discussed at the November 21st Cure Panel Broadcast. You can listen to this broadcast about this exciting new class of drugs if you CLICK HERE. Nick Van Dyk provided a summary of this presentation on his blog, and you can see it if you CLICK HERE.

I was at an IMF meeting at Mayo Clinic where Dr. Chanan-Kahn was a presenter. He explained the biology of multiple myeloma along with his treatment philosophy, with his only prop being a RED SOLO CUP. All of the people that I talked with after the meeting were impressed with his ability to bring such a complex disease and it treatments to a level where we all understood and were quite impressed. Dr. Chanan-Kahn explained that he believes in the philosophy that "Less is Best" when it comes to treatment, and he is not a proponent of stem cell transplant. I think you will find this broadcast to be one that you will look back on as a great educational experience.

For more information on multiple myeloma survival rates and life expectancy go to the web site www.myelomasurvival.com, or you can follow me on my twitter account at: https://twitter.com/grpetersen1

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The Wizards of ONC(Oncology), MD Anderson, Pull Back the Curtain - They Publish "60 Years of Survival Outcomes at The University of Texas MD Anderson Cancer Center"

11/11/2013

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I can not tell you how excited I was when I came across this publication. MD Anderson has gone through the monumental effort of sorting through mountains of their historic data and obtaining overall survival outcomes for 6 different 10 year periods for 25 different cancers including Multiple Myeloma. You can see the data for Multiple Myeloma if you CLICK HERE and go to page 264.

I was hoping that great institutions with remarkable reputations like MD Anderson would provide their clinical staff and the cancer patient population at large with their survival results. Well they have, and it is outstanding that they are one of the first to do so. The one caveat is the myeloma data is published, but the other cancers can only be obtained by buying the book for a hefty price of $90.92. So I can not talk about anything other than the myeloma rates that were published. They broke the data into 6 periods of 10 years, the final period being 1995 to 2004. For Multiple Myeloma, they listed data for newly diagnosed patients who were originally treated at MD Anderson. The summary data and graph appear below.

Adjusting the data to reflect the myeloma only survival rate or relative survival, a MD Anderson patient had a 60.1% chance of surviving 5 years vs. the average facility reported by the National Cancer Institute (SEER cancer statistics) of 34.1%. Therefore. you are at least 1.7 times more likely to survive if you are under the care of the multiple myeloma specialists of MD Anderson. If only they could have provided the 5 year survival for just 2004, I could have compared their data to the most recent SEER data. In the period between 2000 and 2004 the SEER data improved by 30%, and if MD Anderson's 5 year data followed this trend, and they should, they would have some of the best results in the nation. Under the exceptional leadership of Dr. Robert Orlowski I would expect no less.

So if you have another cancer and can find this book in your library, or find a way to view MD Anderson's results you can then compare the most recent period to the data provided by SEER for 2000 for 5 year survival. SEER data is available if you CLICK HERE. Just remember the MD Anderson data is overall survival and must be adjusted to be comparable to the SEER relative survival data. The difference between overall survival and relative survival is that relative survival excludes deaths for any other cause, such as car accidents, heart attack, or stroke. For myeloma the average age of patients is 70, and the adjustment is to add 9.725% to the MD Anderson data. The younger the average age of the patients for any other cancer the lower the adjustment, and the older the average age the higher the adjustment. To find the adjustment for other average ages you can compute it from the data provided by the Social Security Life Tables by CLICKING HERE.

Thank you MD Anderson for taking a leadership role in survival rate transparency, now if you could only make it free. I bet the added patient count would pay for your book!

For more information on multiple myeloma survival rates and life expectancy go to the web site www.myelomasurvival.com, or you can follow me on my twitter account at: https://twitter.com/grpetersen1

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To Transplant or Not to Transplant? Which Has a Multiple Myeloma Survival Rate Advantage, as presented by Dr. Paul Richardson of Dana Farber Cancer Institute?

11/4/2013

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Dr. Paul Richardson, an internationally known multiple myeloma specialist and Clinical Director of the myeloma program at Dana Farber Cancer Institute was the special guest at the October Myeloma Cure Panel broadcast. He discussed the question of whether to use transplant or not in the era of new novel agents? I have always considered Dana Farber as one of the Fab Four of myeloma treatment centers in the world, and like the Beatles Dr. Richardson is British, innovative, talented, likable, and a ground breaker. You can listen to a rebroadcast of this informative can't miss program if you CLICK HERE!

Dr. Richardson is a very busy myeloma practitioner and advocate, as you will notice from his bio which follows this blog post. So much so that it took over a year to find a way to mesh his overloaded Rock Star schedule with the Cure Panel broadcast schedule. I want to personally thank Dr. Richardson for his resolve to make this happen!

Priya introduces the topic of discussion: Myeloma: To Transplant or Not?

Currently, autologous SCT is the standard of care in myeloma because of its high response rate and relatively low morbidity and mortality. However, it is neither curative nor applicable to all patients. Growing understanding of cellular mechanisms, proteins, and key signal transduction factors has led to a tremendous opportunity in the context of new drug development in Multiple Myeloma. With new drugs continuing to improve response rates in patients, the role of stem cell transplants is set to change. And today, we are discussing whether and when to Transplant or Not.

I will try to provide you with a summary of the key points in Dr. Richardson's excellent discussion, and should you want a more detailed understanding, please listen to the entire broadcast.

One Size does not Fit All!

Doctor Richardson started by noting that Dana Farber works very hard to provide a patient centered program for multiple myeloma patients. His answer to the central question as whether and when to transplant or not is that, "One Size Does Not Fit All". Transplant can be very beneficial in the younger patients for which it is intended, however, there is a number of patients where benefits are not observed. And fortunately with the new novel drugs, we are able to obtain the same quality and depth of response that previously we could only obtain with transplant. A key question going forward is who benefits from transplant and when should the transplant be conducted, early or late. Data from various clinical trials shows that progression free survival (PFS) is better, but transplant itself does not provide a meaningful benefit in overall survival (OS). New Clinical Trials are ongoing to provide critical answers as to how the new novel treatments should be used in conjunction with transplant.

Clinical Trials are Ongoing

What researchers have found is that when you use a proteasome inhibitor, immunomodulator, and steroid, such as in this case RVd (Revlimid, Velcade, and dexamethasone), the response rates are remarkably high. In the Dana Farber led Phase 1/2 multi-center study published in 2010 in Blood, a response rate of 100% with 50% of patients obtaining a complete remission was shown. For those patients in this study that went on to transplant, no advantage in progression free survival at 18 months was observed compared to those who did not undergo transplant . This gave Dana Farber and their partners the impetus to conduct a larger Phase 3 trial, in collaboration with their colleagues in the Intergroupe Francophone du Myelome (IFM), knowing that with such an active regimen of RVd they needed to investigate further what role transplant should take in myeloma treatment. In this current Phase 3 trial they are looking at using the RVd regimen either before stem cell mobilization with chemotherapy with a long period of maintenance until progression and then transplant versus the same treatment, but with transplant administered early, followed by maintenance until progression. So patients have the same treatment regimen with the difference being the timing of the transplant. This is important, because one size does not fit all, and in the context of this clinical trial they are not saying some patients will get a transplant and others do not. Far from it, in this trial there is real equipoise (an equal distribution of weight; even balance; equilibrium),  wherein all patients get a transplant, but it is a question of timing, either early or late. What they hope is that it will provide answers for patients in the future by characterizing patients, not just by their clinical features, but also by the genetics of their cancer as to which types of myeloma will benefit from transplant and for which may not, and for whom transplant can be left in reserve.

Several other subsequent trials have confirmed the efficacy of the RVd regimen, both adding more drugs to the RVd mix, or exciting recent data with Kypolis as KVd , and finding the results were encouragingly similar in all of these trials. Therefore, this concept makes the Phase 3 RVd trial all the more significant, with RVd becoming something of a new standard of care for younger newly diagnosed patients.

Dr. Richardson noted that there is a difference between RVd and so called VRd, which utilizes dex as a once a week schedule.  Specifically, RVd partners the dexamethasone with the Velcade infusions both on the day of and the day after, which provide better outcome, and significantly reduces neuropathy Subcutaneous  administration of Velcade also helps reduce neuropathy further.

Dr. Richardson then discussed the important and encouraging role of Kyprolis and Pomalyst, in the relapse and refractory setting, and the potential for the monoclonal antibodies Daratumumab and Elotuzumab for future use in both the up front and refractory setting, as well as other new agents in development.

Panel questions:

Nick Van Dyke - Just published this week, a Chinese retrospective study compared single transplant plus novel agents versus novel agents alone, and found materially better progression free survival AND overall survival in the transplant group. While the study was retrospective and not a statistically perfect analysis, at some point isn’t there enough logic and anecdotal evidence to suggest that if novel agents alone aren’t curing people, and Melphalan is effective, then Melphalan plus novel agents would be better than novel agents alone? Not necessarily in elderly patients or those for whom 5-7 years is an acceptable prognosis, but at least for younger patients that are otherwise in good health and want 10, 15 or even more years?

Dr. Richardson - This is the central issue, and the original study in the late 90's by the French group in the pre novel agent era showed that early or late transplant had no overall survival advantage. Recently there have been several retrospective studies that showed no difference from early vs. later transplant in the context of novel therapy use. For example, the Mayo group using lenalidomide and dexamethasone as initial therapy, followed by early and late transplant, and showed a result opposite to the Chinese study, with no outcome difference, and more recent data has come from two studies by Antonio Polumbo of Turin, Italy utilizing lenalidomide and dex, followed later by either novel agents and low dose melphalan, vs. transplant, followed by maintenance, resulted in the following observations. The toxicities were less in the non transplant patients, the response rates were the same, the progression free survival was better in the transplant patients, and finally that maintenance to progression for either group had a survival advantage. One thing missing in these studies was the lack of the use of a proteasome inhibitor like Velcade in either of the Italian studies, which is belieived to be key to improved survival.

Nick Van Dyke - Trials are being done between no transplant and single transplants which may or may not have maintenance.   Nobody believes that a single transplant cures patients, but there are doctors and centers that believe aggressive induction, tandem transplants and maintenance do offer curative potential for some and long remission for others.   Understanding that these centers who believe they have superior outcomes don't want to randomize patients away from a protocol they believe could cure them, are there any efforts to compare novel agents only against an aggressive tandem protocol with maintenance, and if not, why not?

Dr. Richardson - The current CTN trial which is completing enrollment is designed to answer this question. This trial consists of three arms, one of which is single transplant, followed by RVd consolidation, and Revlimid maintenance. The second is two transplants followed by Revlimid maintenance, and the third is a single transplant followed by Revlimid maintenance. In a Dutch German study they did find some advantage with two vs. one transplant, but the CTN study will answer more definitively this question, but one of the issues with dual transplants is toxicities that limit the ability to use additional treatments with novel agents in the future.

Jack Aiello - I know that Maintenance studies after transplants have shown approximately a 2-yr improvement in Progression-Free Survival (4 yrs vs. 2 yrs). I’ve heard that Maintenance trials have also shown OS benefit. Can you quantify that benefit?

Dr. Richardson - The CALGB (now known as the Alliance) Trial where patients had treatment with novel agents and then transplant, which was followed by maintenance with lenalidomide until progression, vs. no maintenance showed convincingly that the maintenance arm had a significant progression free survival advantage( approximately double the control arm). More importantly it showed a overall survival benefit. We believe the aggregate data thus support the use of maintenance for a period greater than two years or up to progression.

Jack Aiello - With ASH just over a month away, what does your crystal ball indicate will be the 1 or 2 most exciting announcements for Myeloma patients?

Dr. Richardson - We will see important updates of existing trials, updates for treatments for older patients who are not transplant eligible, and on new drugs that we are finding work well with both bortezomib and lenalidomide. We will also see nice data with regard to the combination of Carfilzomib, and Pomalidomide, and the new monoclonal antibodies targeting CD38.

Pat Killingsworth - Can transplant be improved so that it becomes indispensable to myeloma treatment rather than eliminated as a treatment option?

Dr. Richardson - Transplant has improved significantly not least as a result of improvements in supportive care. New forms of melphalan are under development which are intended to be less damaging to stem cells. We are also trying to improve induction treatment for transplant, and finally the emerging role of consolidation with novel agents may be a real substitute for a second transplant. The improvements in transplant are thus arguably a result of the treatments we build around transplant, such as induction, consolidation and maintenance.

For the final twenty minutes Dr. Richardson was kind enough to take the time to answer numerous questions from the audience. Priya Menon is working with Dr. Richardson to provide answers for all of the submitted questions, and when they are available I will provide a link and/or another blog post. We all very much appreciate Dr. Richardson's broadcast, and his efforts with his colleagues to improve myeloma treatment.

For more information on multiple myeloma survival rates and life expectancy go to the web site www.myelomasurvival.com or you can follow me on my twitter account at: https://twitter.com/grpetersen1  A bio for Dr. Richardson follows:

Dr. Richardson is the RJ Corman professor of medicine at Harvard Medical School, clinical director at the Jerome Lipper Center for Multiple Myeloma at Dana-Farber Cancer Institute and a renowned lecturer both nationally and internationally. Dr. Richardson is currently leading multiple efforts studying the use of combination therapies in relapsed and refractory myeloma, as well as in newly diagnosed disease.

Additionally, Dr. Richardson holds leadership positions in several professional bodies and serves on the editorial board of the Journal of Clinical Oncology, Journal of Oncology, American Journal of Hematology/Oncology, The Oncologist, Clinical Cancer Research, and the British Journal of Hematology He also previously served as chairman of the Multiple Myeloma Research Consortium, awarded the MMRC center of the year in 2009, and assumed the Chairmanship of the Alliance Multiple Myeloma Committee in 2011.

Dr. Richardson has published more than 200 original articles, and more than 100 reviews, chapters and editorials in top peer-reviewed journals, including the New England Journal of Medicine, Blood, Journal of Clinical Oncology, Leukemia, Clinical Cancer Research and British Journal of Hematology. His honors are exceptional and extensive, including the Warren Alpert Prize for his contribution to the development of the first-in-class proteasome inhibitor, bortezomib.

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I SO HATE MULTIPLE MYELOMA! It keeps taking people I know and love.

11/1/2013

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I just got an email from the co leader of the Jacksonville, Fl multiple myeloma support group informing me that Hunter Chiles, our other co leader had just lost his 10 1/2 year battle with Multiple Myeloma. Anne wrote: Dianna notified me last night, that Hunter passed into the hands of God yesterday morning. He had myeloma for 10 ½ years and, as most of you know, fought a very hard battle this past year. It hit me like a punch in the gut. I write this with tears in my eyes that I just can't seem to suppress. When he was diagnosed the average life expectancy was three years, so he put up one valiant fight, but I can find very little comfort from this because he has left us too soon. I have said before that being in a support group is great and part of it is the excellent people you meet and the remarkable friendships that develop, but in times like these, it is unbelievably sad. You get to know and love these exceptional people, such fighters, so brave, selfless and caring, and then one day they are not at the meeting and are fighting for their lives. Hunter was a dear friend, and I know how I feel, so I can not imagine Dianne and his family's pain.

If you look at the picture to the left, you will see soul mates. Dianne would talk and Hunter's lips would move, and Hunter would complete Dianne's sentences. The smiles in this picture were not just for the picture but were always plastered on both of their faces. Such a wonderful loving team they were together. He was always quick to laugh, and he knew I was a little bit of showman at the support group meetings, and would constantly egg me on, and I loved it. Everyone in the multiple myeloma support group enjoyed his and Dianne's upbeat and caring personalities.

When Anne Pacowta's husband died from multiple myeloma, Dianna and Hunter were the first to step up and take on the support group leadership role, and ultimately to be co leaders with Anne. Hunter was my friend and he will be sorely missed. I just HATE MULTIPLE MYELOMA! One thing I am sure of is that he is with God the Father! And they both have a smile on their faces!

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Multiple Myeloma Specialists in the News!

10/28/2013

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Recently I have noticed that some of the most skilled myeloma professionals in the world have been in the news, and I have put together a summary of their activities and links:

This program by Dr. Hofmeister is one I am very excited about. He looks to put me out of business, and I hope and pray he is successful. Dr. Craig Hofmeister discusses a ground breaking effort to bring Myeloma Survival Rates to Everyone. He was the special guest on Pat Killingworth's Myeloma On Line Support Group on October 29. You can listen to this informative broadcast if you just CLICK HERE!

Dr. Richardson of Dana Farber Cancer Institute is a Myeloma Rock Star. Dr. Richardson is British, innovative, and truly remarkable. And like the Beatles, with Dr. Richardson's leadership there is going to be a "REVOLUTION" in myeloma survival rates. He discusses the question: "To Transplant or not to Transplant?" You can listen to the rebroadcast of this program if you CLICK HERE. Please listen, it is a can't miss educational opportunity, so "DON'T LET ME DOWN".

Dr. James Berenson was recently interviewed by NPR (National Public Radio) Topical Currents looks at Multiple Myeloma, a rare blood disease of malignant cells found in bone marrow. They visit with Dr. James Berenson, the Director and Founder of the Institute for Myeloma and Bone Cancer Research. Berenson’s Myeloma-related research can benefit all cancers where bone metastasis is a threat, particularly breast, lung and prostate cancers as well as lymphoma and leukemia. You can listen to this NPR program if you CLICK HERE.

Dr. Bart Barlogie is synonymous with myeloma treatment approach that hits the disease hard right at the beginning with intense treatment with multi drugs, transplants, consolidation, and maintenance to keep it under control. Dr. Barlogie is Founder & Director, Myeloma Institute at UAMS, Little Rock and is considered to be one of the best myeloma experts one could get treated under if diagnosed, and has some of the best survival rates for myeloma patients in the world. He was recently outlined in the Little Rock paper, but I like the summary by Priya Menon of Cure Talk, which you can read if you CLICK HERE.

If you are in the care of any of these exceptional Multiple Myeloma specialists you are either very lucky or just extremely smart and probably blessed. Gary Petersen [email protected]

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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The Medical Profession is not ACCOUNTABLE but They Will Be!! Here Comes Consumer Reports!

10/25/2013

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Specalists w/o Measures - BLIND lead the BLIND!

First and foremost, I refuse to blame the doctors for what I believe is one of the biggest problems with our medical system, but I will say that I think the medical administrations are clueless. They can tell you how many beds are full and what their costs are. However, they can not tell you if they are better or worse than anyone else for any given medical issue, or know which procedures or protocols have the best results (unless they send someone to dig through the files and summarize the data), or that they are required to provide the data by the rules established for clinical trials by the FDA. I am starting to feel that if your doctor cannot tell you what his survival rates are, you would be better served by finding a myeloma institution that understands the importance of measuring the success of their program. In business and in life "YOU CAN NOT MANAGE WHAT YOU DO NOT MEASURE!"

Would you buy a car that had no speedometer? Or how about buying a new car that has no window sticker that tells the miles per gallon you can expect. Measures are important in our everyday life. Without a ruler, how long is anything that you want to measure? Without measures how repeatable will your favorite recipe be?. Business uses profits, quality measures, customer service statistics and much more to measure success. Because they know if they do not deliver a quality product that will last, and at a reasonable cost, the customer will find out and they will soon no longer be in business. So where am I going with this?

When I was first diagnosed with multiple myeloma, and because I had a business and engineering background I had assumed that I would be able to find who had the best myeloma program by obtaining some basic measurement statistics from all of the myeloma treatment centers. Well I was wrong, and the only two I found were UAMS (University of Arkansas for Medical Sciences) and Mayo Clinic. I was shocked, so I decided to see if I could help the myeloma patient community by providing more survival information. I have been doing this now for over 2 years and have added 10 more to the list. But even those that have wanted to provide information have trouble because they can not collect the data from their data processing departments. In other words, the care providers do not collect or measure and evaluate the basic data that would help them to determine where their program is currently and help them to determine ways to improve and move the programs forward. A very helpful reader, scientist, and myeloma advocate was trying to help me get his doctor and their program listed on my site and after months and months of followup by him and myself with his care provider he finally wrote me back with the following information, "I checked in with Dr. XXXXXXXX at XXXX. today. Their filing/data retrieval system is a mess. They don't have any retrievable data greater than 5 years old. They have the goal of setting themselves up as a Center of excellence in the Midwest. I told them how beneficial being in your system could be. They agree but complained that they don't have anyone available to enter the data. Not impressed." This type of response is one I have received more times than I had ever thought possible. This just seemed to be such a basic data need. The other disappointing response I have heard is that, "Our institutional rules do not allow us to provide this information". I am not the only one that has noticed this failure in our medical system, an article by Sharon Begley of Newsweek states that, "most cancer centers covet their survival statistics as if they were state secrets." I do have to congratulate the many selfless and humanitarian myeloma professionals who have been forthright with their performance numbers. All of the Doctors and facilities listed on my website have gone above and beyond the call of duty to provide me with their survival information and in all cases have survival statistics well above the averages provided by the National Cancer Institute. This helps to prove that "YOU CAN MANAGE THAT WHICH YOU MEASURE!" And this all brings me to the title of this blog post.

Nobody has dared to take on this huge task for the entire medical profession and establish what most in the medical profession have chosen not to provide, "MEASURES OF PERFORMANCE". And who has been so audacious as to do this? Who else but Consumer Reports. They were the ones who took on the auto industry and provided independent testing and reliability ratings that have revolutionized the auto industry and provided the best and most reliable cars ever built. Would this have ever been accomplished without the measurements from Consumer Reports which we all take for granted today when we look to buy a car? The auto industry has always used Mad Men (advertising) to provide us with their one sided view of their products. They made the Vega sound like a great car! I have purchased most of my cars based on the Consumer Reports recommendations, and many other products as well.

Without measurement the same holds true today for the medical industry, where reputation is usually the surrogate for a hospital's success. Reputation or marketing is used, not performance data when patients choose a hospital. UAMS, Dr. Berenson's IMBCR, and Dr. Hari of the Medical College of Wisconsin have the best survival data, but I would say that Dana Farber and M.D. Anderson have the reputation. Blessed with exceptional myeloma specialists like Dr. Richardson and Dr. Orlwoski, I would expect that Dana Farber and M.D. Anderson would have great survival statistics, but I have no data at all to confirm this for any of these highly regarded institutions. Why don't they publish their survival data? I do not know. Is it just not a hospital administration priority? What can be a greater PRIORITY than giving your clinical staff the tools to improve performance and SAVE LIFE? My assumption is that these two reputable myeloma care centers use the data generated from their extensive involvement in clinical trials as a substitute for performance measures. Few institutions, however, have the resources ($15000 per patient) and skills required to be heavily invested in clinical trials. And what I have found is that it is not the administration, but the doctor who ends up fighting to get the data compiled, and this is with his clinical load and all of their other duties. With their 80 hour clinical loads, and with this additional responsibility, these doctors are my HEROES.

So what is Consumer Reports up to? In 2008 they announced the formation of the Consumer Reports Health Ratings Center and the addition of Dr. John Santa, M.D., M.P.H., to direct the new center. Consumer Reports seeks to add ratings for hospitals and other health-care providers to its ratings of health related products, treatment options, natural medicines, and drugs. Most recently they have put together a listing of surgical ratings for 2463 hospitals. There were a number of surprises in the ratings. It is the first unbiased, independent measurement I know of which determines how successful hospitals were for many elective surgeries. Just one of hundreds of articles on the subject can be read if you CLICK HERE. If you would like to view the ratings you can CLICK HERE. What does this have to do with Cancer and specifically Multiple Myeloma?

I was honored to be able to talk with Dr. John Santa and found out that he is currently in the process of working through the details as to how to obtain the survival data for cancers, or other measures which may be applicable. The same process Consumer Reports went through when they developed the surgery ratings. I got the impression from Dr. Santa that he is convinced that it is a question of when, not if, these cancer performance measures will be published. A key element in his methodology is to contact medical professionals, registries, medical associations, and groups to obtain input to refine the process so that they provide measures that are unbiased and represent a level playing field for all participants. In my discussion with Dr. Santa he was kind enough to answer a few questions and the Q & A follows:

Question 1 - I have seen your excellent work in hospital performance for surgery, and would like to commend you for this excellent work. It seems that there has been some blow back from some of the low performers, which is to be expected, however what is your read on this? Sour grapes or some valid concerns that can lead to improvements.

Dr. Santa - We value all reactions or suggestions. It is common for industry organizations that do not do well to have critical comments though there are also many poor performers who focus on improving and appreciate the feedback. We also get lots of requests from organizations that do well to use the information in some way to promote their work. We remind those folks that, in contrast to other ratings, our ratings cannot be used in advertisements or promotions. The science of measuring and reporting health performance is in its infancy. For us it is a “journey, not a destination.” Lots of work to do.

Question 2 - Are you looking at providing health comparisons for cancers?

Dr. Santa - We published ratings for cancer screening tests in early 2013 and received a very positive reaction from our readers and from the media. In the Choosing Wisely campaign that we are involved in as the lead consumer partner, we have been thrilled to work with the American Society of Clinical Oncology and collaborate on cancer content with them. So we are looking for more opportunities to write about and also rate services or products that relate to screening, diagnosis or treatment. We have had some conversations with organizations that have data on performance around cancer care but so far we have not ended up pursuing those opportunities.

Question 3 - For stage 4 cancers, and incurable cancers like multiple myeloma, I have found in my research that a skilled professional can mean the difference of life or death. For example a multiple myeloma specialist can have a life expectancy of 2 to 4 times that of the average hematologist/oncologist. Will you be putting together a rating for these cancers?

Dr. Santa - We are constantly looking for good information that compares anything in health. The information needs to come from a credible source that is hopefully independent of industry---not influenced by drug companies or hospitals for example. The information needs to be available to the public or such that we can make it available to the public. It needs to be current. And it is important that the information be supported by credible authorities in the field it covers. This can be much more difficult than it might seem. In the case of multiple myeloma for example, how would we figure out who are multiple myeloma specialists? And where would the data come from to evaluate their work? And how would it be independently validated? And if we did this would the information be updated regularly into the future?

Question 4 - What method are your looking at to create this ranking?

Dr. Santa - There are multiple sources of information about cancer and we are trying to learn about them. While some of the information is public, much of it is not. And much of the information that is public is not at the level of a hospital or a doctor so it does not work for comparisons of the sort we do. And invariably the methods used to collect the information may use different definitions and methods than other information sources used. So it can be a bit like the Tower of Babel---lots of folks talking but not much understanding.

Question 5 -From a Google search I have found that one of the reasons that there is question about your surgical ratings is that some 60% of complications happen after a patient has been released. From a layman’s view and understanding statistics, a sample that represents 40% of the population should be more than adequate to represent the mean with exceptional accuracy. Do you see it that way as well or is this another possible measure of the competence of the hospital? The higher the readmission rate would equate to a show of very poor performance.

Dr. Santa - Performance in a hospital during a single stay is usually the best and easiest first step in terms of valid reporting of data about what happened. Once a patient leaves a hospital many more factors come into play and recording them accurately can be difficult. For example the patient may be discharged to a different health system whose information is not easily available or may use different definitions than another. Our sense is that if we can get reasonably accurate information about 40-50% of what has happened that can be of help to consumers. When it is possible to add more information we do so. You have to start somewhere, otherwise you never start. Consumers are smarter than they are given credit for. Our experience is that when we describe the limits of our work consumers note those limitations. They use our information as one of many sources in their decision. That’s the way it should be.

Question 6 - I have heard that some people feel that patients do not want to know this information, that it would confuse them, or that this would reflect poorly on the low performers and that would limit cooperation. It is my belief that the first point is not valid, and may be because the patient is uninformed of the difference in performance, or they have come to trust what their doctor says as “The Truth”. What are your thoughts on this subject? The second one just has no validity for doctors who believe in the “Hippocratic Oath”. How do you read this potential issue?

Dr. Santa - We are fortunate to be living in an era when diversity and differences are honored. People are different and those differences should be honored. For example surveys show that there are some people who want to know as much as they can before they make a health decision while others are prepared to do whatever their doctors tell them to do. I respect both of those approaches. Many of the first types of folks are our readers. And our intention is to give them the best information we can. I must admit some impatience with folks who think that the solution to preventing confusion is to not provide any information at all. Think about any learning process you have moved through in your life. I remember being confused about reading, writing and arithmetic……….but I remember more fondly when I figured each out and the world that was now available to me as a result. All learning involves confusion---it is a good sign, it means people are wading in, taking risks and that’s good not bad.

I am especially concerned about those that urge we suppress information in order to avoid “scaring” doctors/patients or penalizing poorly performing health systems. This thinking has unfortunately been prevalent in many circles for the last decade. I think it has slowed down improvement, creates distrust and harms patients. I think good health care needs to start with transparency. How can a patient trust a doctor or hospital that keeps something important a secret from them? We need to stop treating patients and consumers like children. These are the most important decisions in our lives and both doctor and patient deserve to know everything the other knows and everything that could possibly be important. If a patient does not want to know the details they just need to say so.

You cannot improve what you don’t measure. You cannot compare unless you have common definitions and approaches. And you lose trust from consumers and patients if you are not transparent and share this information with them.

Dr. Santa, thank you so much for your work and continued efforts of Consumer Reports to provide patient outcome data that will help patients and the medical profession make INFORMED care and treatment decisions. I hope and pray you find a way to provide comparisons for hospitals and doctors who now treat cancer patients. I believe that together we will SAVE LIFE, and maybe my own or yours!

For more information on multiple myeloma go to the site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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What is Your Multiple Myeloma Prognosis or Life Expectancy?? NO ONE KNOWS! But ....

10/14/2013

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Which way do we GO??

I just may be a bit overdramatic on this one, but not by much. First let me explain why I make this assertion. When you come to a fork in the road it would be nice to know which of many paths to follow- transplant, no transplant, auto or allo transplant, drug combination, number of drugs in the combination, treatment facility, doctor, location, insurance limitations, et al. But in order to make these decisions you need the information to differentiate one choice from another. On the path shown above there is no information. No sign to tell what town is just up the road, if one is a dead end, if they both end up in the same place but one is twice the distance of the other, or if one leads to Utopia, and the other to a cliff. Information on which is the better choice would be nice, and lacking knowledge you might as well take Yogi Berra's advice, "If you come to a fork in the road, take it!" I frankly would prefer to follow a well researched plan I program into my GPS!

On October 24th, Dr. Richardson, a multiple myeloma specialist, will provide us with his incites into the Dana Farber clinical trial which has been established to answer the question, "To Transplant or not to Transplant"? To sign up for this broadcast CLICK HERE. Because it is a clinical trial, it must follow strict guidelines to insure that the results can be measured and compared, one treatment arm to another. What did I just say? That the results can be measured, and therefore a decision can be made as to which arm of the study is the best. And what are those measures? Some of the most important are response rate, PFS (Progression Free Survival), QOL (Quality of Life) measurements, TRM (Treatment Related Mortality),and I would say the most important OS (Overall Survival). So if these measures are so important in determining success of one method vs. another, then why are they not being accumulated by all hospitals for all cancer patients? These are the most important measurements for each patient, yet they are not in general being consolidated at each hospital as part of their Standard Information Systems Package.

I can not tell you how proud I am of the doctors who have already found measurements so important that they have had their data assembled manually just to be able to provide it for their own use, and so I could provide it to the myeloma patient community. Those remarkable doctors are those listed on the Home page of www.myelomasurvival.com. So why don't these hospitals just accumulate this information for their clinical staff? I DO NOT KNOW! Administration Priorities? What is of greater importance than the survival of their patients.

As I mentioned earlier, I am hoping the program that Dr. Hofmeister, of The James Cancer Institute, has developed is a possible breakthrough for providing these very important cancer performance measures to all doctors, researchers, patients, and caregivers. Dr. Hofmeister will be on Cure Talk Myeloma Support Group hosted by Pat Killingsworth on October 29th. To sign up CLICK HERE! Recently Consumer Reports conducted a study of Medicare patients and compared the outcomes at 2463 hospitals, and this study has provided some shocking surprises. I will provide a blog post on this in a few weeks. You can read about this study if you CLICK HERE.

How far would Columbus have gotten without the measurement tool below on the right (the sextant)?

For more information on multiple myeloma go to the site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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October provides a ONE, TWO punch in Multiple Myeloma Survival and Life Expectancy

10/8/2013

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The myeloma patient community definitely has two excellent programs coming in Octorber. First we have Dr. Paul Richardson, the Clinical Director, Multiple Myeloma for the Dana Farber Cancer Institute. That Topic will be "To Transplant or not to Transplant, That is the Question?" The second is the October Multiple Myeloma Support Group meeting which will feature Dr. Craig Hofmeister, assistant professor of Internal Medicine at Ohio State University Medical Center. Dr. Hofmeister will be discussing The James Cancer Institutes effort to "Bring Survival Rate and Life Expectancy Data to Everyone", the doctor, hospital, researchers and the patient.
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Dr. Paul Richardson

Dr. Richardson will be sharing with us the Dana Faber initiated Clinical Trial which has been designed to help finally answer the question of whether to transplant or not. I have not seen the panel members more excited about one of our broadcasts, and this one just may be our best ever. Dr. Richardson will be the special guest at the Myeloma Cure Panel broadcast of October 24th, at 6:00 pm EST. You can sign up for this panel if you CLICK HERE. Dana Farber and Dr. Richardson has been one of my FAB FIVE myeloma institutions in the world, however I am like the Big Ten and have 7 on my list. A brief bio follows:

Dr. Paul Richardson of Harvard Medical School/ Dana-Farber Cancer Institute

Dr. Richardson is Associate Professor of Medicine at Harvard Medical School, as well as Clinical Director of the Jerome Lipper Center for Multiple Myeloma at the Dana-Farber Cancer Institute in Boston and Chairman of the American Myeloma Research Consortiom. He received his medical degree from the Medical College of St. Bartholomew’s Hospital, University of London, and completed residency training at Beth Israel Hospital. Dr. Richardson is board certified in Internal Medicine, Hematology and Medical Oncology.

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Dr. Craig Hofmeister

Dr. Hofmeister will be the special guest on Pat Killingsworth's Myeloma Support Group Meeting for October 29 at 4:00 pm EST. To sign up and for more information please CLICK HERE.
What Dr. Hofmeister has found is that there is an urgent need for the medical professionals (doctors, and researchers) to have the tools to do their jobs. One of those tools is to know and understand what outcomes have been achieved given a specific treatment protocol. What is the life expectancy and survival rate of the program as a whole or by any which way the doctor chooses to slice and dice it? As with many institutions, this data is not accumulated and made available to the doctors, and this is the initiative that Dr. Hofmeister and The James are determined to provide the medical profession. To me this is a game changer. Wouldn't it be nice if one day you could get on your computer and find out which hospital in the USA or world has the best survival rate for high risk multiple myeloma with a chromosome 17p deletion. My hat is off to Dr. Hofmeister and his team for taking on this remarkable initiative. A brief bio follows:

Dr. Craig Hofmeister of Ohio State University Medical Center

Dr. Hofmeister is Assistant Professor of Internal Medicine at Ohio State University Medical Center. He is a clinical investigator with interest in experimental therapeutics in Multiple Myeloma. His team’s research focuses primarily on phase I/II drug development in myeloma with a focus on novel drugs. He is a member of the myeloma committees of the ALLIANCE cooperative group, Multiple Myeloma Research Consortium, and the Bone Marrow Transplant Clinical Trials Network.

I am so excited to be part of both of these great myeloma programs. I hope you will join up and as always may God Bless your families myeloma journey.

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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The Way to Improved LIFE EXPECTANCY for Multiple Myeloma Patients! Stay one Step Ahead of the Reaper!!

10/2/2013

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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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Multiple Myeloma Clinical Trials - Without them there is little hope!

9/23/2013

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***Listen to Dr. Ajai-Chari a skilled myeloma specialist by CLICKING HERE where he explains clinical trials types, successes to date, barriers to participation by hospitals and patients, cost per patient and who funds the trials, and answers questions from the panel members. REMARKABLE!***

Multiple myeloma treatment has made some excellent progress in recent years, and do you the patient know why? How do the new drugs and treatments become available? The process developed by the FDA is the Clinical Trial. If a drug successfully goes through the Phases 1,2, and 3 of clinical trials and is FDA approved it then becomes part of the treatment arsenal of the Multiple Myeloma Specialist.

On the 26th of September, there will be a Cure Panel Broadcast featuring Dr. Ajai-Chari from Mount Sinai Hospital, New York, with the express purpose of providing you with "Everything that you wanted to know about clinical trials but were afraid to ask!" You can listen to the rebroadcast of this exceptional show if you just CLICK HERE.

There will be a lot of questions answered, and at present we think that we need to add another broadcast because this subject has generated so much interest and questions and the questions continue to come in at a remarkable rate.

So why is there so much interest in understanding clinical trials? I personally believe, as does Jenny Ahlstrom of www.mPatient.org, that it has not been explained in a way the patient can understand, or that there is just not enough locations local to the patient that provides these life saving options. Just 3% of patients participate in clinical trials, and this limits the number and scope of the trials. Fewer trials equals less success. So what has been the success so far? Revlimid, Velcade, Kyprolis, and Pomalyst are all a result of successful clinical trials. I thank God for all the patients that have participated, and to the doctors who take the effort to put up with the headaches caused by the clerical efforts required to conduct a clinical trial.

So you will hear why you should participate, what are the financial benefits, and how trials can extend your life when you have exhausted all of the "standard protocols". See you on Thursday. Good luck and may God Bless your Myeloma journey.

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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Do Multiple Myeloma Survival Rates Finally Approach Cure with Monoclonal Antibodies?? As Discussed by Dr. Asher Chanan-Kahn of Mayo Clinic

The Wizards of ONC(Oncology), MD Anderson, Pull Back the Curtain - They Publish "60 Years of Survival Outcomes at The University of Texas MD Anderson Cancer Center"

To Transplant or Not to Transplant? Which Has a Multiple Myeloma Survival Rate Advantage, as presented by Dr. Paul Richardson of Dana Farber Cancer Institute?

I SO HATE MULTIPLE MYELOMA! It keeps taking people I know and love.

Multiple Myeloma Specialists in the News!

The Medical Profession is not ACCOUNTABLE but They Will Be!! Here Comes Consumer Reports!

What is Your Multiple Myeloma Prognosis or Life Expectancy?? NO ONE KNOWS! But ....

October provides a ONE, TWO punch in Multiple Myeloma Survival and Life Expectancy

The Way to Improved LIFE EXPECTANCY for Multiple Myeloma Patients! Stay one Step Ahead of the Reaper!!

Multiple Myeloma Clinical Trials - Without them there is little hope!

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