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Is Screening Myeloma's New Frontier? - The Entire Country Of Iceland Will Screen For Myeloma And Could Double Their Myeloma Life Expectancy

4/21/2016

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It has taken myeloma almost 30 years to double life expectancy from 2 years to 4 years, but what if you could double it to 10 years from the current 5 years by doing one thing?  In 2014, Dr. Gareth Morgan of UAMS stated, "On the subject of awareness and delayed diagnosis, I believe the fact that it takes 3 to 6 months and more often 6 months from first symptoms to diagnosis, is a bit of a scandal.   To make real inroads into improved myeloma survival we need to get it diagnosed early before we have organ involvement." In 2015 Dr. Irene Ghobrial of Dana Farber outlined a game plan to achieve this goal.  She stated, "Multiple Myeloma is the only cancer where we wait for it to metastasize and show organ, bone damage, or anemia  before we begin treatment."

She and many other specialists are coming to the conclusion that screening, early diagnosis, and early treatment is the future of myeloma treatment.  There are a number of steps that must be taken to reach this goal.  Those steps are as follows:

Step 1 - We need to determine which MGUS and smoldering patients will progress to active myeloma and are candidates for early treatment.  Genetic testing may be the key to this step.  For example just 10% of smoldering patients will progress to full blown myeloma, whereas 50% of high risk smoldering patients will progress.  In MGUS only 1% of patients will progress, but some may have a genetic profile which indicates a higher likelihood of progression.

Step 2 -  We need to prove early treatment will result in improved Overall Survival.  A trial by Dr. San Miguel of the Spanish group was conducted for high risk smoldering myeloma.


Step 3 -  We have simple blood tests for the measurement of M protein and a more sophisticated test called the light chain test.  Both of these tests together cost less than a mammogram or colonoscopy.  However, these tests are not conducted during a normal physical and blood panel.  Dana Farber will be establishing a clinical trial to conduct screening on a large scale to determine if screening, genetic testing, and early treatment can be a game changer like it has with breast and colon cancer. 

All of the steps have now been completed, or are in motion.  The last step is being implemented in Iceland by Professor Sigurdur Kristinsson of the University of Iceland, in his pivotal MGUS screening study for the forthcoming iStopMM (Iceland Screens, Treats or Prevents Multiple Myeloma) trial. The study will examine blood samples from approximately 140,000 adults over age 40 in Iceland for the earliest signs of myeloma. A cancer of the blood plasma cells that affects approximately 90,000 in the US, and more than 200,000 around the world, myeloma can go undiagnosed until the disease begins to seriously damage health.  To read an IMF article which explains the project CLICK HERE.

Why then if implemented will this double myeloma life expectancy?  We can assume if this is an ongoing program, as people turn 40 they are also tested, few patients will ever go undetected as they often do now.  When you have end organ damage you are already at ISS stage 2 or 3.   Most everybody if tested will be found in the MGUS, Smoldering, or in ISS stage1.  Why is this important?  If you are found in stage 1 your life expectancy is twice that of a stage 3 patient.  Because of delayed diagnosis the UK has noted that 20% of patients die within the first 2 months of diagnosis, and the National Cancer Institutes SEER data base shows 30% of patients die in the first 2 years.  So how would one estimate what life expectancy would be under the new program.  Because we do not know with certainly the outcome of the trial, we can only make estimates based on assumptions.  

One assumption might be that there will be far fewer of the 20% who die in the first 2 months. Lets say that goes to 5% which would bring the 2 year deaths to 15% from 30%.  If you do the math this represents a 10 year life expectancy or 50% survival rate at 10 years.

Another assumption might be the death rate in first 2 years will be more like the third year is now.  That is 6.8% and the two year rate of 13.6%.  Or the life expectancy is a little over 10 years. 

Or the best case, like in breast cancer, if found in the early stage like DCIS, 5 year survival is 100%, and if this is the case with myeloma, well then the sky is the limit.  We all die from something else, like old age, but without ever having end organ damage.  Now that would be a Myeloma Miracle!


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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Multiple Myeloma Survival Finally Improved To 5 Years!  Yeah!!! And In Two More Years It Will Reach 6 Years, BUT

4/17/2016

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If you are a myeloma patient, you have to love this news.  When I was diagnosed there was little data available, but I do remember a Mayo publication which said the average life expectancy was 33 months and had not changed in a decade.  The new patients can now look at the new data represented in the graph below, and it looks as though the sky is the limit for survival.  And if you are lucky enough to make it through the first 2 years after diagnosis, the sky IS the limit.  We unfortunately still lose 30% of patients in the first 2 years, and this has not changed much in the last 10 years.  This has everything to do with late diagnosis, inadequate treatment for the newly diagnosed patients. I will leave further discussion on this subject to another post.  But now let us celebrate some outstanding news.  For the new SEER data published on 4/15/16 CLICK HERE.
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On a blog post last year I predicted this would be the year life expectancy reached 5 years, and you can view my prior prediction if you CLICK HERE.  My new prediction is that in two more years life expectancy will increase by another year to 6 years.

Below is a look at the history of the survival for myeloma in the USA and my prediction. 

year                                  survival milestones        years between milestones

1975                          2 years                               -

1998                          3 years                             23

2004                          4 years                               6

2008                          5 years                               4

 

2010 (prediction)       6 years                               2



As you can note in the graph and list  above, the pace of change has increased significantly to where we are improving life expectancy by one year, in just  two years.  Whereas, it took 23 years to improve survival by just one year in 1975.  And if you have not noticed, the drastic increase in the rate of improvement started in the early 2000's which coincides with the development of  IMID,s (Thalamid, Revlimid) and the PI (Velcade).

With 4 new drugs approved for myeloma in 2015, and two of them representing a new class of drugs (checkpoint inhibitor and monoclonal antibody), we can expect continued improvement for the patients who are fortunate enough to be diagnosed in a timely fashion. The 30% who do not make it 2 years will not share in this because of late diagnosis, wrong diagnosis, and poor first line treatment.  More on this subject later.


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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Necessity Is The MOTHER of Invention! A Key To The "Myeloma Miracle!"

4/11/2016

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PictureSusie Novis
First, what is the myeloma miracle?  It is the outstanding drug development, which we had last year, and the continuous improvement achieved in survival and quality of life with each new development.   We do have some of the best and most dedicated researchers and myeloma specialists in the world. How did this come about?  I believe the myeloma advances have had three major components which are the centerpiece of  the recent outstanding progress in survival and drug development.  These components, like the three legs of a stool are as follows.

Component 1 -  The founding of the IMF and its development.  The International Myeloma Society has provided a place for patients to obtain information on myeloma, including IMF support groups.  In addition it provides a forum for doctors to share ideas, develop strategy, coordinate clinical trials, and the dissemination of their findings.  The doctors who joined in on these programs have became the de facto myeloma specialists..  There is no degree called myeloma specialist, however, those who participated in the IMF efforts have become the closest thing to one.

This became a necessity for Susie Novis, who with Brian Novis and Dr. Durie, founded the IMF.   From the IMF web site Susie wrote the following.

Shortly after she and Brian Novis were engaged, he was diagnosed with myeloma. Brian received his diagnosis over the phone. His doctor called him at work and said, "You have multiple myeloma." Brian said, "What's that?" The doctor replied, "It's a cancer of the bone marrow, you have 3 to 5 years to live, stop by my office on your way home." He was just 33 years old.

Like everyone who hears the words multiple myeloma for the first time, they were in shock and, worst of all, they felt completely alone. At the time, there was no place for myeloma patients and their families to turn for help or support. Susie remembers that when she should have been picking out china and a wedding dress, she was searching for medical information for her fiancé. "We wanted to help prevent future myeloma patients and their families from experiencing the same sense of isolation we had to struggle with." Susie Novis

In four short years Brian Novis died at 37 years old, and it would have been so easy to just put this tragic chapter of Susie's life in the rear view mirror.  But no, she would selflessly carry on to honor her husband's memory.  I have seen  a number of caregivers who have done the same thing, and their example is just wondrous and awe inspiring.  At this years Pat's Survival School, we had several caregivers whose  loved one had lost the battle that were represented there, and who were giving back.  Anne Pacowta, and Dianna Chiles, both IMF leaders,  Pattie Killingsworth, Pat Killingsworth's wife continued the Survival School after Pat's recent death, and  Kimberly Alexander, whose NFL football  husband died several years ago.   These women are truly remarkable for their selfless service.  If I could be that strong?


PictureKathy Giusti
Component 2 - The founding of the MMRF in 1998, or the Multiple Myeloma Research Foundation.  The MMRF has been integral in creating a business model  which  helped priorities research,  and most of all developed a fund raising mechanism required to support this research.  The NCI has funds for research but hands it out  based on their own formula which has provided just $45 million for myeloma research, and with the cost of new drug development estimated to be in the 1 to 2 billion dollar range, you can see the basic math is against us.  In 2014 the MMRF had been able to raise over $27 million, and they partnered with the drug companies and research community to bring new drugs to market.  This has been instrumental in the 4 new drugs approved for the treatment of myeloma in 2015,   Myeloma represents 1% of all cancers and yet has produced 33% of all new cancer drugs.  Again taking information from the MMRF web site they write the following.

The Multiple Myeloma Research Foundation (MMRF) was founded in 1998 by identical twin sisters Kathy Giusti and Karen Andrews soon after Kathy was diagnosed with multiple myeloma. With limited research funding, no effective treatments, and few clinical trials in the pipeline, the life expectancy of the rare and fatal cancer was just three years.

From its inception, the MMRF has been uniquely focused on building collaborative research models to quicken the pace of scientific inquiry and get patients the lifesaving treatments they desperately needed. It is widely recognized as having transformed the treatment landscape for multiple myeloma patients, dramatically extending patients’ survival. It now stands as a new paradigm for other research groups seeking to catalyze progress in other cancers and rare diseases.


The obvious necessity was to find a way to improve on this dismal prognosis.  She continues to be dedicated to this effort even though she had an allogeneic  matching donor transplant in 2006, which has been durable.


PictureJenny Ahlstrom
Component 3 - This one just may be a little premature for  some people, but the focus on high risk disease which is being highlighted by Myeloma Crowd, may just be as important or more important than any of them.  Great progress has been achieved in low risk disease, but little to no progress has been achieved in high risk disease.  It is my understanding that myeloma will one day morph into high risk disease for most, if not all myeloma patients who have not achieved cure.  It is for this reason I believe the MCRI, or Myeloma Crowd Research Initiative, which focuses on high risk disease, is so very important.  If we can cure high risk disease, we can cure all myeloma!  Jenny Ahlstom, a young mother of six children, with high risk features could not accept the current two year estimate of life expectancy and started the Myeloma Crowd website.  From the website they state:

The Myeloma Crowd is a patient-driven initiative to help educate and support multiple myeloma patients. The goal is to simplify complex information and arm patients with important and current information about myeloma in order to help them obtain optimal outcomes.

The Myeloma Crowd and CrowdCare Foundation were created by myeloma patient Jenny Ahlstrom. The Myeloma Crowd now features a wealth of content contributed by other myeloma survivors.

The MCRI assembled a world class myeloma specialist panel who identified the two most likely high risk myeloma projects to pursue.  Both projects are immunotherapy projects, so unlike a drug, they do not fit into a pharmaceutical company's portfolio.  They are a process like SCT(stem cell transplant), which benefits the hospital more than the drug companies.  However, it will still require a lot of money to get through the clinical trial process, and as a result the MCRI is trying to fill this shortfall with crowd funding.  I do believe drug companies who can think outside the box, a wealthy benefactor, or capital fund can see the profit they can achieve from owning a piece of patent for the process, which will result in the myeloma cure. 

As you may have noticed, the title gave a hint to the fact what we have a group that is heavily weighted to the outstanding women of the myeloma patient and advocate community.  I am just so glad they have all shown the initiative to be part of the solution, and create a template for which other cancers might follow.  You go "GIRLS"!

And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com

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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Pat's Myeloma Survival School, What An Amazing Weekend.  Part Of The Myeloma Miracle.

4/4/2016

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What a marvelous program and outstanding success.  Where else will you find a patient centered cancer program which brings together patients, caregivers, patient advocates, myeloma specialists and their support staff, myeloma researchers, nurses and nurse practitioners, nutritionists, pharma partners, genetic testing companies, authors,  long term survivors, The International Myeloma Foundation, Multiple Myeloma Research Foundation, Myeloma Crowd Research Initiative, et al.   Pat did this, and  Pat's wife Pattie, Michele, and Dave, with the help of so many others, made sure this patient centered idea did not die when Pat passed away so unexpectedly and suddenly just over a month ago.  Pattie was determined to institutionalize this outstanding program as a legacy for Pat, but most of all to continue the selfless efforts which Pat had always provided the myeloma patient community.  I think Pat was remarkable in bringing all of these resources into one place for the benefit of patients, however I also think it is an example of what I am coming to believe is the Myeloma Miracle.  What is the Myeloma Miracle?  I think it is the synergistic cooperative effort which exists between patients, advocates, doctors, researchers, IMF, MMRF, MCRI, and our Pharmaceutical partners,    You can see this all come together at Pat's Myeloma Survival School.  It is also the reason myeloma, a cancer which represents 1% of all cancers, can have over 33% of all cancer drugs approved in 2014 were for the treatment of myeloma.

This effort would never be possible without  our many generous sponsors who helped to make this affordable to the myeloma patients.  The entry fee was just $60 per participant, but my best guess of the cost without the help of our sponsors subsidizing this program to be more on the order of between $500 to $700 per participant.   Thank you to our sponsors and our pharma partners who give back to the patient community.  We have many new drugs approved or nearing approval for myeloma, so I can expect additional participation from the newer members of Myeloma Pharma.  Our myeloma pharmaceutical  partners have shown what world class patient centered advocacy programs can achieve.   I have come to understand how important it is to have pharmaceutical  companies who see us as partners and not merely profit!

Three years ago Pat Killingsworth started this as Pat's Beach Party, and as he would always say "Feel Good and Keep Smiling," and he wanted the event to be educational and fun.  Even though this years program included a memorial to Pat on Saturday night, it was really a celebration of  Pat's life and his  unwavering contribution and relentless dedication to the myeloma patient community.  In addition to a program to help patients become their own best advocates and to educate themselves, Pat also wanted those that attended to hit the beach and enjoy what Fernadina Beach had to offer.  It included  a walk for Muscles For Myeloma and a silent auction which raised money for the Myeloma Crowd Research Initiative both of which Pat felt was the potential cure for myeloma.  If you cure high risk myeloma, you will cure all myeloma.  I share this wish.   The Myeloma Crowd Research Initiative is a program to fund the two most likely clinical trials to cure myeloma.  Nearly $200,000 has been raised to date, with a goal of $500,000 to totally fund this research. Also at the end of the program, the number one question was, "Will This Wonderful Survival School Be Available Next Year?"  Pattie hopes to continue this Survival School as a legacy to Pat and an ongoing resource for the myeloma patient community.  I will help to make this happen in any way I can.  For those who attended, please use the comment section to let the program team know what your thoughts of the program were, and if it should live on for those who could benefit from  this resource in the future.  I am including some pictures of the event. 

Pat would have been very happy to know Pattie did such a remarkable job with the help of Michele and Dave.   And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com

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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Myeloma Civil War - High Cost of Cancer Drugs!

3/26/2016

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I have to begin this discussion letting the readers know that I love my myeloma drug dealers.  Without Thalamid and Velcade, I would not be writing this blog post today.  I am alive because these game changing drugs were part of the regimen which has keep me alive for the past 10 years.   In addition, I had great insurance which my wife had with her job in the school district, and Medicare was a backup, so I seldom had to pay anything myself.  I once told one of the drug manufactures which supported our IMF meeting, "I do not care how much the drugs cost as long as I do not have to pay for them."   Recently I have watched two outstanding myeloma doctors from Mayo Clinic have a civil debate on twitter about the high cost of cancer drugs. I admire them both.   Dr. Rajkumar has taken the position that cancer drugs are outrageously priced and older drugs should not go up more than the increase in the cost of living index.  He is so right, and any thing more is a ripoff.  Dr Fonseca will argue without the profit motive to develop new drugs, there would be no new drugs for orphan diseases like myeloma or orphan diseases in general.  He is so right, and I am still alive because of this new drug development.  So how can these two terribly divergent views coexist and both be right.  I think they both have merit.  I will outline my thoughts on each in future posts.

Dr. Rajkumar is right for the following reasons:

1) Old drugs like Gleevex(Novaris) and Melphalan(GlaxoSmithKline) have had outrageous price increases over time. CLICK HERE or HERE
2) Drug companies cry high costs of R&D, yet prices are similar for high and low volume diseases. Fixed costs like R&D go down linearly with volume.  So for all of the most common cancers,  patients with breast, colon, and lung cancer are getting totally ripped off.

Dr. Fonseca is right for the following reason:

1) Profit is the only driver for Pharma companies for the development of new game changing drugs. Government and non profit cancer organizations try but are sadly incapable of properly funding cancer research, therefore Pharma must fill this gap. 

How can both of them be right.  I believe they are both correct, however sometimes, and I think that sometimes is now, government needs to make sure the playing field is level.  My original statement was, "Save me as long as I do not have to pay!"  Unfortunately some people can not pay for the out of control drug price increases.  It reminds me of an old skit by Jack Benny "Your Money Or Your LIFE?" because when someone has this kind of control over your life and death, I say that is a monopoly and the government has laws for that. 

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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BART's BACK!  UAMS or Mt. Sinai?  Should I Stay Or Should I Go?

3/15/2016

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For all the patients who have been treated by Dr. Bart Barlogie at UAMS, there was the big question-should I stay at UAMS or change to Mt. Sinai, where Dr. Barlogie now practices?  My decision was not that easy. So I went to see Dr. Barlogie at Mt.Sinai, and let me count the WHYS I will continue to go. 

- Dr. Van Rhee is at UAMS and he has a similar philosophy to Dr. Barlogie, so I did not have to worry about a major change in treatment philosophy.  I like both doctors, however Dr. Barlogie has been my doctor for several years and even a tie would go to Dr. Barlogie.  Advantage, Sinai

- UAMS has seen so many patients and has a support system which is  well oiled and efficient.  Can I get a similar experience at Mt. Sinai?  If I had been one of the first flood of new patients from UAMS to Sinai in the first few months, I would have said UAMS by a mile. With Dr. Barlogie's move to Mt. Sinai,  there was a sudden flood of new patients.  When I went they had already made the adjustments to handle the increased volume, and it was one of the few times I did not have to wait hours for my appointment with Dr. Barlogie.  He was always overbooked and overextended.  In addition, I was able to get all of my results in a three day period rather than 4 days at UAMS.  By a slim margin  Advantage, UAMS but with a little more time I think this may change to Sinai.

- New York is less costly to travel to than Little Rock and easier  to get to with many cheap direct flights from Jacksonville. Advantage Sinai

- My wife just retired, so my insurance is now Medicare and Blue Cross Blue Shield Part F.  Will this new changed insurance provide coverage at UAMS and Mt. Sinai?  They were accepted by each location.  Tie for UAMS and Sinai

- My daughter lives in Brooklyn, so I would be able to make it a family visit along with a myeloma checkup.  No cost for a hotel, and no car required (use the subway).  Without this the cost of hotel would be higher than in Little Rock. You can find hotels for $100 to $150 per night  in New York if you don't mind a $20 cab ride or a $3 subway fare.  Just as UAMS has had for long stays, Sinai is negotiating long term rates for those who need a longer stay for transplant.  I can hardly imagine New York will have an advantage in this area over Little Rock.   For me Advantage Sinai, for most others Advantage UAMS

- Little Rock is a nice city, however during breaks in treatment in New York you can walk to  the MET museum or the Guggenheim museum, and on your off day do a half price Broadway play. Advantage Sinai.

- What is the level of the other doctors and support staff at Sinai as compared to UAM?  UAMS has Dr. Morgan, Dr. Maurizio Zangari, and Dr. Fritz Van Rhee, while Sinai has Dr. Jagannath, Dr. Barlogie, and Dr. Chari. Dr. Barlogie noted the support staff at Sinai was outstanding and above his expectations.  I have to rate this a Tie for Sinai and UAMS

Final Tally - For Me Advantage Dr. Barlogie and Mt. Sinai!

Now how was my visit.  The visit with my family and the myeloma checkup all went well.  Before I left I was given all my results except those for my MRD test, which takes several days.  I flew into New York on Tuesday, and took an hour subway ride from Brooklyn to Mt. Sinai on Wenesday.  Being from places which do not have subways it was a little intimidating, but I found New Yorkers more than happy to help us get where we needed to go.  On Friday I had a PET scan at 7:30am in the morning and Dr. Barolgie's meeting at noon.  The PET scan info was already available.  How cool was that, it saved me a day.  Dr. Barlogie gave me an all clear sCR(stringent complete response), no bone lytic lesions, no M spike, and normal light chains and ratio.  So I went home joyful.  I had been MRD negative for the last 2 years and was hoping to make a three-peat.   When my MRD test came back in a few days it had showed the following:

MRD was slightly vague: when Bart returns from Japan we will get his take on it.
A very low-level population of CD38+ plasma cells is detected that coexpresses lambda cytoplasmic light chain, comprising 0.01% of all analyzed white blood cells (cKappa 0%, cLambda 20%). COMMENT: Significance of this finding is uncertain but may represent minimal residual disease. Suggest clinical correlation. Cytogenetics were 46 XY in 20 metaphases.

Signal Genetics, Gene Expression Profile:



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To me this did not sound very good, and certainty not as good as a three-peat.  When Bart came back from Japan, he confirmed I was MRD positive, but it was not really bad news.  He said first it was at a very low level, and secondly it was the first time he was able to evaluate my myeloma cells, and the GEP(gene expression profile) showed a very low risk disease.  He likened it to a very low risk low level MGUS state.  With myeloma there is never a dull moment. 

So will I stay or will I go? For now I am going to dance with the one who got me to sCR, when my original diagnosis was for a life expectancy of three  MONTHS.  So Dr. Barlogie, ready or not you got me now!  As long as I had him on the phone, I asked him if he would be on an upcoming Cure Talks panel and he was kind enough to agree.  So we will have the pleasure of having Dr. Barlogie on a May or June panel.  Whatever works into his schedule.  Should be outstanding.


And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com

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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Give Me An L (Leukemia), Give Me An L (Lymphoma), PLEASE, PLEASE, PLEASE Give Us An M (Myeloma)!

3/11/2016

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March is Myeloma Awareness Month! First and foremost, I love the LLS(Leukemia and Lymphoma  Society), and I think they do a great service to blood cancers in general. They provide up to $10,000 in copay assistance to myeloma patients, twice that of other covered cancers.   However, it does not get any billing in the societies name even though it is the second most common blood cancer, and one of the biggest problems is an almost total lack of awareness.  Few people have ever heard of myeloma.      From my last blog post leukemia gets 2.2 times  what its years of lost lives would justify, and lymphoma gets 1.4 times what its years of  life lost would justify, and myeloma is just 80% of what it would justify,  and 40% if deaths were recorded correctly.  Myeloma is the most under-reported cause of death for all cancers!  So I think the outreach and education of the LLS has been an outstanding  educational tool and conduit for improved research spending for both leukemia and lymphoma and this has driven  the  outstanding spending for research for leukemia and lymphoma.  Everybody has heard of leukemia and lymphoma, but people only hear about myeloma after being diagnosed by a very skilled General Practitioner, or savvy oncologist who connects the dots. 

It is my belief. the LLS is the most visible cancer society in the nation and maybe in the world, and being part of the name would go a long way to get people to at least hear of myeloma and learn more about it on the LLS site and in general.  We are the second most common blood cancer, yet do not even get a mention in the name of the most well respected and visible cancer society and site in the world.  As Pat might have said "Myeloma Gets NO RESPECT"!  Lack of awareness in the community of  General Practitioners, Oncologists, and Hematologists must result in what Dr. Morgan of UAMS says is just a scandal.  Twenty percent of myeloma patients die within the first 2 months of diagnosis because of late diagnosis or misdiagnosis.  LLS, I beg you give us an M, SOS, SOS, Save Our Souls!  You do not understand just how many lives you will save with a simple M.  PLEASE, PLEASE, PLEASE, GIVE MYELOMA PATIENTS AN M!  LLM!!!

GARY PETERSEN([email protected])


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No Respect!  Myeloma Patient's Don't Even Get Credit For Dying!  Do The Myeloma Math.

2/29/2016

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This a subject I have thought of writing about for a very long time.  When we lost Pat Killingsworth recently it brought it back front and center for me.  Pat has had a 9 year battle with a rare presentation of multiple myeloma.  In the end he died from a brain aneurysm, aggravated by a rare form of blood disorder called TTP, and TTP was most likely caused by the chemotherapy from his myeloma fight.  He was admitted into the hospital with kidney failure.  So what was on his death certificate, kidney failure, brain aneurysm, TTP, or complications from chemotherapy, or complications from multiple myeloma.  Well, it was listed as a brain aneurysm. I am fairly certain Pat would say he died from complications due to myeloma.  This would be important to him because funding for the NCI(National Cancer Institute) uses lives lost in there allocation of funds.   So if Pat, a myeloma patient and fervent myeloma advocate, can not be considered part of the myeloma death statistics then who can.  Let's take a look at the math.  The National Cancer Institute reported the following:

  • Estimated New Cases in 2015 -  26,850 
  • Estimated Deaths in 2015        -  11,240

This would suggest the cure rate would be (26,850-11240)/26,850  =  58%, however the long term survival of myeloma patients is only 10 to 15%.  It can therefore be deducted myeloma deaths are under-reported by over 43%.  Because the most likely causes of death for myeloma patients is  pneumonia, infection, and bleedouts, these could easily be on the death certificates of many myeloma patients.  So if cure was 15%, then the number of deaths would be closer to 22,822.   Why is this important for the myeloma patient community?  The NIH (National Institute of Health) and NCI (National Cancer Institute) use deaths, and lost years of life by cancer type to rationalize the research spending for the NCI research projects.  The more deaths and  lost years of life the more spending for that form of cancer.  A study by the NIH tries to rationalize spending to the number of lives lost and years of life lost by cancer and you can read it if you CLICK HERE.  A summary slide is shown below. 


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The way to read the graph is that for prostate cancer, NCI funds three times more than the YLL(years of lost lives due to prostate cancer) can justify.  It also shows myeloma gets about 8/10 of what it should get based on its reported YLL, but we know myeloma deaths are being underrepresented.  If represented correctly the myeloma spending falls to about 1/2 of what is justified by its real YLL.   Great for leukemia which 2.2 times what its YLL would justify or lymphoma, which gets 1.4 times what its YLL would justify.  But as is the title of this post, "Myeloma Gets No Respect".  This graph shows how out of balance the spending is to the lost years of life by cancer type, and I hope the NCI uses this study to better balanced spending.  In addition, the deaths should be computed by taking the newly diagnosed number and subtracting out the projected cure rate.  Most other cancers seem to closely follow this formula when you look at the reported newly diagnosed and deaths shown on the NCI SEER web site.

We spend $124 billion on cancer treatment each year and fund the NCI with just $5 billion.  To me this is penny wise and pound foolish.  Maybe we should be funding everything at 3 times the current average funding instead of cutting anything.  That would just be $15 billion, and one would expect a much larger reduction in cancer treatment cost to offset this in the longer run.   That would mean myeloma would end up with 7 times the current amount if everyone got their YLL share.  Wishful thinking,
dreamer, yes, but reasonable and logical. 


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

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Today Is A Very Special Double Anniversary!  Married For 46 Years, and 10 Years Since My Myeloma Diagnosis. By Gary Petersen   

2/27/2016

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Today is a very special day for me in two ways. First, 46 years ago today, February 27th is when my lovely wife Anita and I were married.  So that was one of the best days of my life. 

It was also one of the worst days of my life, in that 10 years ago today on my wedding anniversary, I was informed I had Stage 3 mutliple myeloma with end stage renal failure.  My daughter, who was an editor on the medical  desk of the Wall Street Journal, researched myeloma and talked to some myeloma specialists.  She found the average life expectancy of myeloma was published at just 3 years, but end stage dialysis depended kidney failure made it very high risk with an average life expectancy of just 3 MONTHS.  I was treated by a myeloma specialist at both Mayo and UAMS.  Today is also a happy day for my myeloma journey because I have been MRD (minimum residual disease) negative for two years, and I have lived beyond  my prognosis by 9 years and 9 months. 


So I hope and pray we all can beat the averages, and find the cure.  And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com

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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Pat Gave Us His All, And Continues To Do So With An Outstanding Survival School!

2/24/2016

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Pat's Beach Party Memorial is now Pat's Myeloma Survival School, and before he so tragically left us, he put together an outstanding program for the newly diagnosed and long term myeloma survivor.  As only Pat could do, he has lined up some of the best and most knowledgeable myeloma doctors and patient advocates to present the World of Myeloma According to Pat.

The newest and most up to date treatment for myeloma will be presented by Dr. Guido Tricot.  He has been a leader in the myeloma treatment since his days at UAMS.  His program has resulted in estimated life expectancy 2 to 3 times the average published by the National Cancer Institute.  He was also Pat's doctor and was able to get Pat into sCR. and will be able to discuss TTP, which was the rare blood disorder twice as rare as myeloma which caused Pat's brain aneurysm. 

Just so you all know this educational program is still very much alive, and although Pat's recent passing had all but eliminated new sign ups, they have started to pick up and we have 100 signed up, but still have 50 spots available.  

A draft of the Myeloma Survival School is as follows:

Dr Guido Tricot, MD, PHD-U of Iowa Hospital/Holden Comprehensive Cancer Center
"Total Therapy Demystified"
His Staff: 2 nurses will be speaking on "The Transplant Experience from a Nurse's Perspective"

Melanie House, PT, Clinical Specialist will be speaking on "The Physical Challenges of Myeloma from Diagnosis to Treatment"

Mary Doyle,(Pattie's Sister) Facility Administrator for Newport Richey Kidney Center will speak on "Protect Your Kidneys" Diet/Dialysis/Labs  She is also bringing Maria Ramos, Patient Liaison/Patient Care Technician with her.

Dr. Brian Van Ness, PhD, U of MN, speaking on "Promising New Drug Research".

John McKillip, DDS, U of Missouri College of Dentistry tells his transplant experience.

Dr Ryan Perkins, Oncologist from Ackerman Cancer Center in Jacksonville, speaking on "Innovations in Radiation Therapy".

Kim Alexander (Wife of Elijah Alexander-NFL) tells her story and her goal to duplicate Myeloma Patient support in every place Elijah played.

Tracy Bonds, RN, Amgen's Clinical Nursing Educational Team on "The Survivorship Deck: Four tests to keep you on top of things,"  together with Dave Visel

New FDA Approved Drug information

Caring for the Caregiver
How the MMRF and IMF can help-support available

Myeloma and food, Chi Gung, managing your oral meds

In addition, many myeloma advocates and Pat's friends will be there to meet and greet and provide you with their myeloma incites. Cynthia Chmielewsk, Nick Van Dyk, Danny Parker, Gary Petersen, Andy Sninsky,  Kimberly Alexander, Matt Goldman and more.

Pat and Patti would like no more than to have a full house, and even after death, Pat provides hope and a future for all of us in the myeloma patient community. PLEASE CLICK HERE TO SIGN UP.  And as always Feel Good  and Keep Smiling!


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