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How Critical is Supportive Care to Multiple Myeloma Survival? Does It Improve Life Expectancy and Survival Rates?

11/25/2013

In football they often say," The Best Offense is a Good Defense", and Bear Bryant of University of Alabama football fame is noted for his quote, "Offense fills seats, but Defense wins Championships".

Dick Butkus, A Great Bear of a Defense!

I make this point because I recently had an epiphany when I was thinking about why on earth the National Cancer Institute estimates 22,350 new cases of myeloma for 2013 and just 10,710 deaths. If you look at other cancers the difference in deaths and new cases is a very good estimate of the cure rate for that cancer, but for multiple myeloma this method of estimation would indicate a cure rate of 52%. I would just love to believe this to be true, but the National Cancer Institute's own data reports long term survival is no more than 10 to 15%. So what is the difference?

Myeloma patients seldom die from myeloma, they die from the complications from myeloma, and how this is reported might be one reason for this discrepancy. The number one reason is pneumonia, other infections, kidney failure, anemia, etc.

This, therefore, brings me to the realization that supportive care for the treatment of the many complications of this disease may just be as important as the cancer treatment itself. Or a great Defense(supportive care) is as important as the Offense(cancer therapy). MD Anderson and Mayo Clinic emphasize supportive care in their programs, UAMS actually has a Director of Supportive Care in their myeloma program, and Dr. Elias Anaissie, the Director of the Myeloma Program at the University of Cincinnati Cancer Center, has an extensive background in supportive care. Dr. Anaissie has published a well written example of an exceptional supportive care model. You can read this publication if you CLICK HERE. The British have another great publication on supportive care if you CLICK HERE.

I can only speak from my own experience, and that comes from my treatment at UAMS. They made sure that patients and their caregivers knew of the complications from the disease, and especially during the neutropenic phase of the stem cell transplant when you have NO immune system. My wife, and caregiver, and I were given instruction in these complications, and she was trained on how to give me antibiotics and other drugs through my infusion port. We were also given instructions on what to do if I had a fever. In addition, I was administered an anti fungal, antibiotic, and antiviral as a replacement for my immune system. Because these myeloma centers of excellence have seen most every eventuality, their supporting care staff has the same extensive experience with the complications from myeloma and its treatment. Without this experience, locations that do not have a large myeloma population just " Don't Know what they Don't Know"! This education came in handy when I was running a fever of 103 from pneumonia, and my wife and daughter forced this "I'M OK MAN" to go to the emergency room, where they were just able to pull me from the jaws of death. I went septic in just a few hours, and that for a myeloma patient is most often terminal. It went from, I am tired and need to lay down, to a fever, and the emergency room in just a few hours.

I also wonder why the top myeloma specialists who report their survival rates have a two year death rate of just 3 to 12%, whereas the two year average death rate reported by the National Cancer Institute is 34.4%. Maybe they "Do Know what they need to Know"! You are 3 to 11 times more likely to survive 2 years under the care of a skilled myeloma professional, as compared to the average of all facilities reported by the National Cancer Institute.

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

11/19/2013

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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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How Critical is Supportive Care to Multiple Myeloma Survival? Does It Improve Life Expectancy and Survival Rates?

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.

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