Blog Posts

Tom Brokaw has Multiple Myeloma - Thank You for Making it Public! You May Have Just SAVED LIFE!

2/13/2014

I have the utmost respect and admiration for Tom Brokaw as a broadcaster and just a person who seems to be a great and caring human being. I was shocked to hear of his diagnosis, and can say "I know how he felt". How would anyone feel when they are told that they have an incurable blood cancer with an average life expectancy of just 4 years as reported by the National Cancer Institute. For one thing, you often have it for a while, before it is diagnosed, and have fatigue, constant infections, bone damage, kidney, and other organ damage, or any number of symptoms that may be treated, but as yet not diagnosed as caused by multiple myeloma.

Then when you are diagnosed, usually by a local oncologist, he may believe he has the skill and expertise to treat this disease. This is one of the biggest mistakes often made by the myeloma patient, and is the reason I wrote the article "Improved Multiple Myeloma Life Expectancy in FIVE IMPORTANT STEPS." Tom Brokaw has accomplished the two most important steps by finding a multiple myeloma specialist, someone who is skilled in this complex and deadly disease. And it is because of this skill, knowledge, and familiarity with the nuances of myeloma that the myeloma specialist's patients live 2 to 4 times longer than the average. They will live 8 to 12 years or longer and some 15 to 30% will be CURED.

I truly thank Tom for the strength and courage to make his diagnosis public. We hear so many stories of cancer patients being shunned by people they thought were their friends, the loss of job opportunities, or not being selected for promotion or plum assignments, or to be pitied, and viewed as a "Dead Man Walking".

So why do I say that Tom just may have SAVED LIFE. For one thing because multiple myeloma is an orphan disease with only 20,000 people diagnosed nationally, few have heard of it, not many doctors are really skilled at treating it, and drug companies seldom put money into drugs for myeloma because there are so few customers, and the customers won't be customers for very long (4 year average life expectancy). So if someone of Tom's status becomes active, more people find out about multiple myeloma, the best way to treat it and where to get it treated, and fund raising goes up for more research into finding the ultimate cure. Some examples of some people who have had a huge impact on multiple myeloma are:

Sam Walton of Walmart - Not so much that he had the disease, but was lucky enough to have Dr. Bart Barlogie of MD Anderson as his doctor. Dr. Barlogie went on to start the first Myeloma Intitute in the World in Little Rock, Arkansas, where many of the first innovations in treatment have been developed.

Susan Novis, Brian Novis, and Dr. Brian Durie - Susan Novis's husband Brian was diagnosed with mutiple myeloma and this trio started the IMF (International Myeloma Foundation). The IMF has been on a mission, a mission to improve the lives of myeloma patients. With over 196,000 members in 113 countries worldwide, the IMF is the oldest and largest organization dedicated to finding a cure for myeloma. http://myeloma.org/Main.action

Kathy Giusti - Identical twin sisters Kathy Giusti and Karen Andrews founded the MMRF after Kathy was diagnosed with multiple myeloma. The MMRF relentlessly pursues innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure. They have collected over $300 million dollars to fund research into a cure.
http://www.themmrf.org/

So Tom, we welcome you to a select group of people who no one in their right mind wants to join. Thank You Again, Good Luck, and May God Bless your family's myeloma journey.

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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Cure vs. Control for Multiple Myeloma - Dr. Vincent Rajkumar, One of Mayo Clinic's Myeloma "DREAM TEAM", Discusses This Vigorously Debated Subject

2/9/2014

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***Now that the broadcast has aired, I believe we just had one of the best Myeloma Cure Panel Broadcasts yet presented. To listen to a rebroadcast CLICK HERE.***

Mark your calenders for what I believe will be one of the best Myeloma Cure Panel Broadcasts yet presented. Dr. Vincent Rajkumar will be discussing the subject of Cure vs. Control for Multiple Myeloma at 5:00 pm EST on February 26th. For instructions on how to listen or to ask your questions on air CLICK HERE.

The subject of CURE vs. CONTROL for multiple myeloma has been a vigorously debated subject for a very long time. Dr. Rajkumar had been a proponent of the Control Treatment Philosophy and ten years ago, when few if any people believed that myeloma was curable, control was overwhelmingly the majority view. But maybe "The Times They Are A-Changin". More and more doctors are now saying the big C word, CURE.

I mention the Myeloma "Dream Team" because I believe Mayo has assembled a world class team of medical professionals for the primary purpose of fighting multiple myeloma. In the current Olympic charged atmosphere, I remember the first time the USA assembled the best NBA basketball players, the first DREAM TEAM which resulted in a gold medal performance. Mayo's improvement in survival rates is nothing short of miraculous. The Mayo Clinic Medical Edge Video from July 11, 2011 states that their 3 year survival has improved from 29% to close to 90%. When compared to the SEER rate of 55.6% you are at least 3 times more likely to survive three years under their care than at the average of all facilities that report their data to the National Cancer Institute.

Dr. Vincent Rajkumar a Member of Mayo's Myeloma DREAM TEAM!

With a group which includes Dr. Vincent Rajkumar, Dr. Robert Kyle, Dr. Martha Lacy, Dr. Shaji Kumar, Dr. Asher Chanan-Kahn, Dr. Vivek Roy, Dr. Rafael Fonseca, Dr. Keith Stewart, and Dr. Craig Reeder, it truly is a Myeloma "DREAM TEAM", and we have the Michael Jordan for this broadcast.

Not wanting to put Dr. Rajkumar on the spot, but hold onto your hats, because we have an Olympic level performance in the making. You can view his exceptional bio if you CLICK HERE. If you would like to see a 2011 Blood Journal article by Dr. Rajkumar on this subject CLICK HERE.

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

P.S. - As you may have heard Tom Brokaw of NBC has been diagnosed with Myeloma and will be getting his treatment at Mayo. Tom, welcome to a great group of people that no one wants to join. You are in excellent hands at Mayo. May God Bless your myeloma journey. View a blog post on Tom Brokaw CLICK HERE.

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I Am Off To See The Wizard, The Wonderful Wizard of Arkansas!!! - Time For My Annual Visit To Be Prodded, Poked, Punctured and a New Test MRD (Minimal Residual Disease)

2/1/2014

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I can hardly believe that it has been 8 years since my diagnosis with dialysis dependent kidney failure, and then found out this was the good news. The bad news, which I found out later was the kidney failure was caused by a cancer of the bone marrow called multliple myeloma. I was first treated at Mayo Jacksonville and then went on to do a modified off protocol version of the UAMS-MIRT University of Arkansas Myeloma Institutes TT3 (Total Therapy 3) program. So now I return once a year to see if my complete remission continues. In the first week in February I will have blood drawn, a 24 hour urine analysis, MRI, PET scan, and a bone marrow biopsy, and a new test called MRD or Minimal Residual Disease test.

Bart the Wonderful Wizard of Arkansas

The bone marrow biopsy is usually the one test that most people dread. I have found that if I have a fentanyl lollypop 30 minutes prior to the procedure, I don't have that much discomfort. If you actually want to find out what the nurse is doing back there during the biopsy you can see a video of the process if your CLICK HERE.

However this time I am more apprehensive of the new MRD test. All the current tests for light chains, lesions, bone marrow biopsy, M spike, etc. have always indicated that I was in CR. The MRD test is a far more sensitive test, and will be able to see if there are any myeloma cells left in my system. So a MRD negative result would confirm that my disease is under control based on the most sensitive tests yet available for multiple myeloma diagnostics. And a positive result would just SUCK. Other diseases use a MRD test to determine if a patient's treatment has been successful, and when or if it should be changed. MRD is used for acute lymphoblastic leukemia (ALL), and MRD status is one of the most powerful predictors of disease-free and overall survival for children with ALL. The promise for myeloma is that we are able to use this test in the same manner. The International Myeloma Foundation has developed a program called the Black Swan Initiative intended to use a test for MRD with enough sensitivity that a MRD negative result would define a multiple myeloma cure and develop treatment protocols that can achieve this goal.

So now I am off to see the Wizard (Bart Barlogie). I like Bart, respect their program and the people at UAMS but as I have found, "There's no place like home, there's no place like home!"

For information on the UAMS MIRT myeloma program from a patient's perspective you can CLICK HERE, or go to Nick's Myeloma Blog which gives a detailed explanation of the program as Nick goes through it day by day if you CLICK HERE.

Added after my checkup at UAMS

So how did my visit go. For a little reference, where did I start out in Feb of 2006. I was fatigued, and a checkup which showed dialysis dependent end stage kidney failure, which at the time with myeloma had a three month life expectancy. My bone marrow was 90% myeloma cells, I was anemic, few platelets, five lytic lesions on my chest, low red and white blood cell counts, and in the emergency room for 5 days of continuous dialysis with a special filter to remove the light chains that were clogging my kidneys.

The result of my current tests, blood tests showed a normal hemogram, improved creatinine, normal liver function, CD4 counts recovering, light chains within normal levels, bone marrow biopsy with no morphological evidence of myeloma, MRI and PET scan showed no lytic lesions or infection, CT bone density did show osteopenia in my spine and I will start low-dose Zometa.

And the MRD test by 8-color flow cytometry was negative. YEA!!!! The statement from Dr. Bart Barlogie "Thus, the patient qualifies for the highest level of complete remission." YEA!!! With a final few jokes and laughs, and as always a hug for me and my wife, we bid farewell to The Wonderful Wizard of Arkansas.

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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Cancer Specialists SAVE LIFE - The Evidence Continues to Mount!

1/26/2014

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When it comes to incurable cancers like multiple myeloma, or any metastasized (Stage 4) cancers, a specialist in that cancer continues to show survival rates and life expectancy 2 to 5 times better than the national averages. A recent blog post by Pat Killingsworth has the heading "It makes a difference how and where myeloma patients are treated". In the post Pat has found additional evidence that a cancer specialist's survival rates outperform the national averages. He writes:

Fellow Floridian and myeloma survivor, Gary Petersen, hosts a website, MyelomaSurvival.com. On it, Gary stresses how important it is to be treated somewhere that specializes in multiple myeloma. In a feature article that ran on MedPage Today after ASH last month, myeloma specialist, Dr. Noopur Raji, agrees:

“What it really tells me is that some of [survival may have] to do with access to drugs and access to therapies,” she said. Access to the latest treatments is more likely at academic centers, she noted.

The clinical implication for patients is that “if you have a center which focuses on this disease, go to that site,” she said.

Dr. Raji is a myeloma specialist and was discussing a recent study by Mayo Clinic which had studied almost 28,000 patients newly diagnosed in 1998 through 2000 and observed the following findings:

For instance, more than 10% of patients treated at academic centers lived longer than 10 years, compared with about 5% treated at community cancer centers.

Similarly, more than 20% of those who had a stem cell transplant as part of initial therapy lived more than a decade, compared with about 5% of those who did not.

You are therefore 2 times more likely to survive 10 years if you are treated at an academic institution. And if you look at the specialists listed on this site most are from academic institutions. So it could just be another chicken or the egg, or both, question. You can read Pat's entire article if your CLICK HERE. In the article, Dr. Raji also goes into more detail into the surprising advantage of early stem cell transplant, over later or no transplant.

There is an excellent read by Sharon Begley of Newsweek that makes the same conclusion for all cancers. The headline reads: "Why a Top Cancer Center Could Save Your Life." She comes up with some nice comparisons and hard data, but also finds that survival results are very hard to come by. You almost have to be Sherlock Holmes to find published information. She states: "In trying to find the oncologist or cancer center with the best track record on, say, stage IV bladder cancer, even the savviest patient quickly hits a wall: with a few exceptions, cancer centers treat these "outcomes" data like state secrets." To read this excellent article CLICK HERE.

But the fact remains if you find a specialist for your incurable or stage 4 cancer, you can survive for as much as 2 to 5 times longer than if you were not treated by a specialist. However, as Sharon states, many curable cancers or 80% of cases have not metastasized and can be treated successfully at a community oncologist.

I have worked with many myeloma specialists who have gone out of their way to provide their survival information for myelomasurvival.com, and these doctors are my heroes and are helping to prove that survival performance measurement can SAVE LIFE. In addition, I had recently helped two friends who had asked me if there were specialist listings for colon cancer and breast cancer, both of which are very common cancers. And there was nothing that I could find, however I could do a search with the heading "Stage 4 Colon Cancer survival rates" and find that some information by hospital is available. You can find a few doctors and hospitals that have survival rates 2 to 5 times greater than the national averages for both stage 4 breast and colon cancer. I have a blog post on how to find a myeloma specialist, and the same search methods can be used for any stage 4 cancer. You can read this post if you CLICK HERE.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Mirror Mirror on the Wall Who has the Best Allo Survival of Them All?

1/20/2014

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I will give you 10 guesses. It is the Blood and Marrow Transplant Program at Northside Hospital in Atlanta, Georgia. They qualify this as non related matching donor transplants, which is a very difficult kind of transplant. It is quite the surprise to see it is not one of the famous nationally known hospitals that one might think would be the best. I am always on the lookout for survival statistics for multiple myeloma, and as anybody knows who has looked for hard data by hospital, it is difficult to come by. So in my search I came across an article published by the Northside Hospital which identified their allogeneic transplant program as the best in the nation for 1st year survival. The one hundred day and the 1 year survival statistics are very important measures of success for an allogeneic transplant program. One very important point of note is that the vast majority of this data is for other blood cancers and lymphoma, and only a very small percentage is for multiple myeloma. The allo continues to be a rare procedure for myeloma patients. One of the reasons for this low usage is the high occurrence of Graft vs. Host Disease where the bodies own immune system turns against the donor stem cells and creates some nasty side effects. However, a breakthrough clinical trial using Velcade during the allo transplant has shown great results in mitigating Graft vs. Host. Pat Killingsworth is doing a multiple part blog post on a patient going through this trial and you can read the first post by CLICKING HERE, and view all parts by going to http://multiplemyelomablog.com/ Dr. Hari of the Medical College of Wisconsin was recent interviewed on the mPatient.org Radio Program about their allo program. Dr. Hari's results are some of the best in the United States with a 74% first year survival, and you can hear this program if you CLICK HERE.

You can read the newsletter by Northside Hospital if you CLICK HERE. Two very interesting graphs compare Northside's data against other programs in its region of the country and against the best known national programs. The graphs are noted below:

On the first graph the Northside hospital data has a death rate of 21%, whereas the last one on the graph for Southeastern Transplant Centers has a death rate of 48%, so you are 2.3 times more likely to survive 1 year under the care of the doctors at Northside Hospital. And if you look at the second graph you are also 2.2 times more likely to survive one year at NSH than at the nationally known Emory or Johns Hopkins facilities. Of the 152 allo transplants at Northside, only 5 were myeloma patients, and of these 5, 4 were alive at one year. This is 80%, or equal to their overall number of 79%, however 5 transplants is just too small a sample to be statistically significant. This is just 3% of total allo transplants at Northside for myeloma patients, and this is fairly representative of what you will find for a national average.

You can find data for all of the Allogeneic programs that report data to the National Marrow Donor Program (NMDP) if you CLICK HERE. It will show a listing by state, and you just click on the name and review all of their data by disease type.

Now, what is the take away from these findings. First, if you are a cancer patient who can benefit from an allo (mainly leukemia and lymphoma) the data is there for you to choose a location that is at least 2 times more likely to keep you alive for the first year. All of the locations listed on the NMDP site has this data and should be able to tell you, and if they do not you can now find it yourself. Unfortunately, these same locations also have similar data for survival for the auto transplant, but have as yet chosen not to make this public. However they do have access to this information and should be able to provide it to you. If they do not give it to you, they are either unaware of its existence, or just are afraid to provide their below average performance to their patients. What should be happening is locations that are not performing to the highest standard for allos should be finding out what the Northside Hospitals of the world are doing that make them the best of the best and duplicate it in their practice.

I think what the NMDP is doing for the allo is a game changer, and very brave of all the membership hospitals that has chosen to participate, however it should be expanded to include the auto transplant, and ultimately for all cancers. This is the vision that Dr. Hofmeister has for myeloma and would be expandable to all cancers with the Ohio Myeloma Initiative. You can read about this if you CLICK HERE. Consumer Reports is also looking to provide survival performance by center for all cancers, and this is a potential game changer as well.

The fact that I continue to see progress in the area of survival outcome based performance by facility bodes well for future improvements in cancer life expectancy. Like a very insightful mentor of mine once stated: "You can not improve that which you do not measure". This is no different for cancer treatment, and finally it looks like we are moving in that direction.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Improved Multiple Myeloma Life Expectancy in FIVE IMPORTANT STEPS

1/9/2014

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Sometimes I wonder if there should be a quick start multiple myeloma handbook. No one really gives you a guide as to how to tackle this monumental task that has just turned your life upside down.

First off you go to a doctor for a broken bone, bone pain, constant and reoccurring illness, anemia, or the many other symptoms that are an offshoot of your myleoma. This doctor will find you have high calcium in your blood, kidney dysfunction, bone lesions, high blood protein levels or some other marker that will result in having you see an oncologist. The oncologist does a bone marrow biopsy and maybe a light chain test and confirms multiple myeloma. This is where many people make their first mistake and leave their treatment in the hands of the oncologist who identified their disease. They may recommend a treatment plan, but this is where a myeloma patient needs to follow the five important steps to improved myeloma survival.

This is where the 5 steps to your successful myeloma journey begins.

1) Become your own best advocate and educate yourself about this disease. Given that there isn't a consensus about how to treat this disease, patients must unfortunately educate themselves about their treatment options. For a summary of how to do this CLICK HERE!

2) Choose a MULTIPLE MYELOMA SPECIALIST to lead your treatment plan. This is a MUST HAVE. Myeloma specialists show a survival rate 2 to 4 times greater than the national average. There is a continuum of treatment philosophies to choose, and they go from "Less is Best" to "More is Cure". A list of multiple myeloma specialists can be found if you CLICK HERE!

3) Find out if you have high risk or low risk disease. This is done by either a FISH test or a 70 gene array. Low risk patients (85% of patients) have a disease that is easier to treat, and high risk (15% of patients) has half the life expectancy of the low risk type. It would therefore require a facility well versed in high risk myeloma, and also one that is heavily into clinical trials. Clinical trials often focus on high risk disease, and you will be more likely to get into these trials if the facility you are treated at participates. You can find out more about high risk disease if you CLICK HERE.

4) People with myeloma seldom die from myeloma but rather from complications from myeloma. Pneumonia, infection, anemia, and internal bleeding are just some of these complications. Therefore, a treatment center that has a focus on supportive care is crucial to your survival. For more information on this subject CLICK HERE.

5) Continue your myeloma education by becoming a member of an IMF or LLS Support group. Support group members learn more about this disease, and knowledge is life. Anecdotal evidence suggests a longer life expectancy from active membership in a support group. For more information on this CLICK HERE.

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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Dr. Fritz van Rhee of UAMS Discusses The Multiple Myeloma Total Therapy Program - With A 40% Cure Rate for Low Risk Patients!

12/12/2013

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Dr. van Rhree - Searching for the ultimate CURE!

Dr. Fritz van Rhee discussed the Total Therapy Program for Multiple Myeloma of the University of Arkansas for Medical Sciences (UAMS) in Little Rock, AR. The program was broadcast on December 16th, and you can listen to a rebroadcast of this exceptional Cure Panel if you CLICK HERE.

I am excited about this broadcast for a number of reasons. First, this is the only program in the world that has professed to a Cure for the last 10 years, and although they have been criticized for using the word cure, they now show a cure rate of 40% for low risk patients. This happens to be the best results of any hospital which reports their survival data. In addition, their most recent data shows an average life expectancy of 15 years for their TT3 program, and this is 3.8 times longer than the average of all the facilities that report their survival to the National Cancer Institute. Now some 10 years later many multiple myeloma specialists talk of cure in some 10 to 25 percent of myeloma patients. Second, Dr. van Rhee is not only a myeloma specialist he is one of the world's premier researchers into Castleman's disease (100 times rarer than myeloma). One of his patients honored him with one of the most moving stories of how a committed, relentless, caring, and patient driven doctor (Dr van Rhee), who refused to give up and saved his life. When he felt he was beyond death's door, with no more options available, the good doctor begged drug companies to give his patient one last chance. It truly moved me! You can read a Chicago Tribune article from his patient if you CLICK HERE. I was thinking I should photo shop a halo onto the head of Dr. van Rhee because he sounds like he should be Sainted. Finally, and for full disclosure, Dr. Bart Barlogie of UAMS along with Mayo Clinic saved my life from what was at the time a 3 month life expectancy for my myeloma which had a negative prognostic indicator. I am now 7 years and 10 months in CR with no sign of the MM in any of my tests.

UAMS is one of the most renowned and recognized programs in the world, and this broadcast is your opportunity to listen to one of the founding fathers of the Total Therapy program. To view a previous blog post about UAMS CLICK HERE. Good luck and God Bless your Myeloma Journey/ [email protected]

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

Dr. van Rhee's brief Bio:

Fritz van Rhee M.D., Ph.D is an internationally known multiple myeloma researcher and professor of medicine in the UAMS College of Medicine and director of Developmental and Translational Medicine in the Myeloma Institute. He joined the Myeloma Institute in 2001, establishing a laboratory for developing innovative medical treatments using the bodys immune system. He is the leader of multiple National Cancer Institute-funded grant projects related to developmental therapeutics and anti-myeloma effects of so-called natural killer cells in the body's immune system. He earned his medical degree from the Erasmus University in Rotterdam, Netherlands in 1985 and is UK board certified in Internal Medicine and Hematology. van Rhee trained in Hematology and Bone Marrow Transplantation at the John Radcliffe University Hospital in Oxford and the Royal Postgraduate Medical School in London and earned his doctorate degree from the Imperial College of Science, Medicine and Technology at the University of London. He came to the U.S. in 1996 as a Fogarty Fellow under John Barrett, M.D. with the Allotransplant Section of the National Heart, Lung and Blood Institute at the National Institutes of Health.

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ASH 2013 - Multiple Myeloma from a Patient's and Myeloma Specialist's Perspective

12/8/2013

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Several of the members of the Multiple Myeloma Cure Panel were at ASH 2013 (American Society of Hemotology) and obtained the breaking news about myeloma treatment and care. They were part of a special ASH 2013 multiple myeloma review of the content from the meeting and they also answering listener questions. This is from the patients perspective, so it should be invaluable for the myeloma patient community. The meeting was broadcast on December 12th, and you can listen to the rebroadcast if you CLICK HERE.

You can view a presentation of ASH from a myeloma specialist's perspective if you CLICK HERE. Dr. Orlowski of MD Anderson and Dr. Richardson of Dana Farber, two of the most skilled myeloma practitioners in the world give you their takeaways from the meetings. Pat Killingsworth provided a blog post on this presentation and includes a lively discussion by his readers, and you can read it if you CLICK HERE.

Some of the biggest news that the panel members gleaned from the meeting include:

- They were all excited about the number of doctors who are now talking of CURE of low risk disease...in the next 5 years.
- Continued focus on Monoclonal antibodies like Daratumumab and SAR650984 which showed single agent results in heavily pretreated patients.
- Fit/Unfit/Frail categories for elderly
- SMM (Smoldering) Risk analysis & early treatment
- Cytoxin benefit over Melphalan
- So many treatment options now with Cfz and Pom and available clinical trials
- Maintenance still needs more study
- Buzz around Black Swan initiative and Onyx
- Maintenance vs. non-maintenance post transplant
- Top 8 new drugs - anti CD38, MLN9708, ARRY 520, ACY 1215, Selinexor, antiCD138, panobinostat, bendamustine
- Immunotherapies (daratumumab and CD138)
- Compass Trial
- Daratumumab, Revlmid, dex combination showed impressive results with a response rate of 73% in a small population of patients (8/11 patients who had received a median of 3-4 prior treatments)
- Novartis/Penn's customized T cell wows ASH with stellar leukemia data - A total of 19 of 22 pediatric patients with lethal cases of acute lymphoblastic leukemia experienced complete remissions after being treated with the CAR T therapy, CTL019, a T cell engineering to target cancer cells that express the CD19 protein. And they say it may have application for myeloma!

The one disappointment for me was the lack of any trials with an IMID, proteasome inhibitor, steroid, and monoclonal antibody such as RVd with Daratumumab.

Pictures of the Panel Members are shown below. Our own MYELOMA POWER RANGERS. Thank you so much for all you do for the multiple myeloma patient community.

Cynthia Chmielewski, Pat Killingsworth, Jack Aiello, Matt Goldman, Priya Menon, Lizzy Smith, Nick Van Dyk, Gary Petersen

Some panel members blogged daily from ASH. You can read Jack Aiello's posts if you CLICK HERE. Pat Killingsworth provided updates if you CLICK HERE, and Cindy Chmielewski blogged from ASH and you can read her updates if you CLICK HERE.

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

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Multiple Myeloma - Why Do People Beat the Average Myeloma Life Expectancy Prognosis? Or How To Improve Your Mulitple Myeloma Survival Rate!

12/1/2013

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***This article was updated 9/24/2020 and you can read the update if you CLICK HERE.***
I published on this subject more than a year ago, and it has been very helpful to many in the myeloma patient community. I have provided some updates and hope that it helps to assist you in your myeloma journey.

The SEER(Surveillance, Epidemiology, and End Results) data for multiple myeloma has been published in 2013 by the National Cancer Institute, and the average life expectancy remains at 4 years for the third year in a row. However, some people beat the odds and live 10 to 20 years or more. When I was first diagnosed, the data for a person with dialysis-dependent kidney failure was just 3 months, and the overall average was 3 years. Now I am a 7 year and 10 month survivor, so I have beaten the average life expectancy prognosis at the time, and this was with what was called a negative prognostic indicator (kidney failure). So I believe you can break into two parts a patient's ability to beat the odds. Part one is disease dependent, or what was the hand that you were dealt. Part two is related to the level of care that is available to you. For more information on survival rates and life expectancy CLICK HERE.

Part 1 - Disease Dependent

Some people are just plain lucky and are given a form of myeloma that is not that aggressive. In other words they have myeloma, but it happens to be smoldering myeloma. This form of the disease can be present in the patient but not show any outward symptoms. It can remain in this mode for 5, 10, or even 20 years.

The age of the patient is very important, in that you are 2 times more likely to survive if you were diagnosed at 49 years of age or less. The average age of the typical myeloma patient is 70. You can read more on this subject if you CLICK HERE.

Some people may have an active disease but do not have any of the negative prognostic indicators. These include, but are not limited to, deletion of chromosome 17p and translocation of 4;14 or 14;16 or 14;20. Your myeloma specialist will run the FISH test or other genetic tests to determine if you have any of these negative prognostic indicators. If you are considered high risk, the life expectancy is just half of the current average, or just 2 years. You can read more about high risk multiple myeloma if you CLICK HERE.

The sensitivity of the disease to treatment is also important. My myeloma seemed to be very sensitive to the combination of Cytoxan, Thalamid and Dexamethasone and put me into remission very quickly. Some people might have the same experience with Revlimid, Velcade, or Dex, or any combination of these drugs. If the disease comes back, as it often does, the re-application of the same regimen may continue to work for years. I know one patient who has taken Thalomid for years as his only treatment and remains in remission. This is working well for him.

And of course if the average is 4 years, half of the people will invariably beat the average.

I am sure there are other disease factors, however, what I will discuss now is the part of disease control that you may or may not have more control over.

Part 2 - Quality of Care

There are some elements that you may or may not have much control over, the first of which is the availability of insurance. If you do not have insurance or have no access to care, the average life expectancy is less than one year. However, Medicare has a Compassionate Allowance Program where you can be approved in less than two weeks if you go to your local office and can show that you will not live without care. To see the program CLICK HERE. The Affordable Care Act may provide an option for the 15% who are not insured, and Medicare, Medicaid, and drug company assistance programs are also available. In addition, there are other programs which can provide assistance listed on the bottom of the home page, to view CLICK HERE. Unfortunately without care, like people who need dialysis (which is always covered by Medicare), you will have below average life expectancy.

An Experienced Myeloma Specialist SAVES LIFE! MAYBE YOURS!

Multiple Myeloma is a rare blood cancer, so many hematologist/oncologists may not see one patient in a year. As a result not all oncologists or hematologists are the same. However, some are very skilled and experienced with Multiple Myeloma and have treated many myeloma patients. The data shows these myeloma specialists provide an average life expectancy of 10 years or more, while the average remains stagnant at 4 years. For a listing of these exceptional specialists CLICK HERE or for a more extensive list without survival history just CLICK HERE. And obviously, if your myeloma specialist has an average patient life expectancy of 10 years, their patients will beat the average by more than twice the average. This is what I did when I chose to get my SCT(stem cell transplants) at University of Arkansas for Medical Sciences, UAMS, which has a myeloma program called MIRT, Myeloma Institute of Research and Therapy. At the time they had over 10,000 transplants under their belt, and as a result they were expert at the process, and knew what could go wrong and had a plan in place to get you through any potential complications. I have found from my work on this site that centers like Mayo, Dr. Hari(Medical College of Wisconsin), UAMS, or Dr. Berenson's (IMBCR) have very different approaches to treatment, but because they are expert in what they do, they have similar results. A brain surgeon is who you would choose over any other surgeon if you had a brain tumor, why would you not do the same for myeloma? Find out how to find a myeloma specialist by CLICKING HERE or CLICKING HERE .

Myeloma specialists have access to drugs that other oncologists do not. Because they are the thought leaders, they are involved in clinical trials, and can obtain some drugs through other programs that lesser known oncologists do not have access to. Worse yet, oncologists who are not myeloma specialists may not even know that some of these drugs even exist. For example, some of the well connected specialists have access to unapproved drugs like Daratumumab or Ixazomib through special programs. Or some specialists can use drugs that are only approved for relapse or secondary therapy options (Krypolis and Pomalyst), and obtain approval to use them for newly diagnosed patients. They also have access to the best clinical trials like VRD for first line therapy which provides a response in 100 percent of patients. When you run out of options with the currently approved drugs, they can provide access to those that have done great in clinical trial, but are not currently available to the general public. Because you need a significant infrastructure to conduct clinical trials at your facility and they cost the facility $15,000 per patient, few local oncologists have access to clinical trials. Sometimes it is who you know!

Myeloma patients seldom die from myeloma, they die from the complications from myeloma. The number one complication is pneumonia, and others include 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. To read my blog post on supportive care CLICK HERE.

I also think the quality of care that you receive can also be affected by the knowledge of the patient, and this can be obtained by doing your research on finding the best approaches to care by looking at the work of the best myeloma specialists on-line, and by going to great sites as listed in the Resource Section of www.myelomasurvival.com. To find out how to get educated about multiple myeloma CLICK HERE. In addition, joining a support group of the International Myeloma Foundation or the LLS (Leukemia, Lymphoma, and Myeloma Society) will provide more great information to improve your life expectancy. I have found that the average life expectancy of most of these support groups far out-performs the average. Knowledge is power! Additional information on the benefits of support group membership can be found at if you CLICK HERE.

There are 80,000 multiple myeloma patients in the USA, and if we can move the average from 4 years to 10 years of life expectancy with the myeloma specialists, we could save 80,000 times 6, or 480,000 years of LIFE. Many times more if we include the entire world. You all can help by getting this message out to the myeloma patient community though Facebook and Twitter. Everyone knows someone who has myeloma or may have a friend or family member that can be helped by this information. With your help we can "SAVE LIFE"!

Good luck and God Bless your Myeloma Journey/ [email protected]

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

73 Comments

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

11/25/2013

11 Comments

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

11 Comments

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

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