About Gary Petersen

Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1

Experts’ Picks: The Best Of ASH (The American Society Of Hematology) in Summary

The American Society of Hematology (ASH) meeting is the largest meeting of experts in the world for blood cancers. How any patient or patient advocate can sort through the mountain of data presented at these meetings is next to impossible?  How do we uncover the “best of the best abstracts”  on myeloma care and treatment?  [...]

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ASH 2017: Experts’ Pick – GlaxoSmithKlein’s BCMA Antibody

ASH (The American Society Of Hematology) is the world's most comprehensive hematology event of 2017, and covers all blood disorders. To find the "Best of the Best ASH2017 Myeloma Abstracts", I asked some of the world's best myeloma specialists what they considered to be their favorites from ASH 2017. I am pleased to provide the myeloma [...]

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ASH 2017: Expert’s Picks – Daratumumab Treatment in Smoldering Myeloma

I asked some of the world’s best myeloma specialists what they considered to be their favorite ASH 2017 myeloma abstracts. I am so pleased to provide the myeloma patient population the “Best of the Best ASH 2017 Myeloma Abstracts. In an ASH session on which Myeloma Crowd's Eric Hansen reported, titled “Controversies in Myeloma”, Dr. Ola [...]

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ASH 2017: Experts’ Picks – Daratumumab with Revlimid, Velcade and Dex

ASH (American Society of Hematology) is the largest and most comprehensive hematology meeting this year. It covers all blood disorders.  I asked some of the world's best myeloma specialists what they considered to be their favorite abstracts from ASH 2017.  I am so pleased to provide the myeloma patient population the "Best of the Best [...]

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ASH 2017: Experts’ Pick – Crowdsourcing For Improved Classification Of High Risk Myeloma Patients

ASH (The American Society Of Hematology) is the world’s most comprehensive hematology event of 2017, and covers all blood disorders. I asked some of the world’s best myeloma specialists what they considered to be their favorite myeloma abstract from ASH 2017. I am so pleased to provide the myeloma patient community with this series of [...]

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ASH 2017: Myeloma Experts’ Favorite ASH Abstract Pick by Dr. Paul Richardson – Celgene/Bluebird Bio CAR T

ASH (The American Society Of Hematology) is the world's most comprehensive hematology event of 2017, and covers all blood disorders. I asked some of the world's best myeloma specialists what they considered to be their favorite myeloma abstract from ASH 2017.  I am so pleased to provide the myeloma patient community with this series of blog [...]

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ASH 2017: Myeloma Experts’ Favorite ASH Abstract Pick by Dr. Ola Landgren

I asked some of the world’s best myeloma specialists what they considered to be their favorite ASH 2017 myeloma abstracts.  I am so pleased to provide the myeloma patient population the “Best of the Best ASH 2017 Myeloma Abstracts." Two of my firm beliefs have become 1) MRD (Minimal Residual Disease Testing) is integral to [...]

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ASH 2017: Myeloma Experts’ Favorite ASH Abstract Pick by Dr. Saad Usmani

The upcoming American Society of Hematology meeting is the largest meeting of experts in the world for blood cancers. I asked some of the world’s best myeloma specialists what they considered to be their favorites from ASH 2017. I am so pleased to provide the myeloma patient population the “Best of the Best ASH 2017 [...]

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ASH 2017: Myeloma Experts’ Favorite ASH Abstract Pick by Dr. Vincent Rajkumar

The upcoming American Society of Hematology meeting is the largest meeting of experts in the world for blood cancers. I asked some of the world’s best myeloma specialists what they considered to be their favorites from ASH 2017.  I am so pleased to provide the myeloma patient population the “Best of the Best  ASH 2017 [...]

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ASH 2017: Myeloma Experts’ Favorite ASH Abstract Pick by Dr. Gareth Morgan

The upcoming American Society of Hematology meeting is the largest meeting of experts in the world for blood cancers. ASH is like a  Hematology Abstract Wikipedia!  How is any patient or patient advocate to sort through the mountain of data?  How do we uncover the "best of the best abstracts"  on myeloma care and treatment?  [...]

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Myeloma Co-Pay Assistance Plans Faltering is a Crisis for Some Patients

BY GARY PETERSEN Our healthcare system is broken and another example of this is in the fact  that not only the Patient Assistance Network (PAN) co pay program is out of funds (early 2017) for myeloma, but the Leukemia & Lymphoma Society (LLS) has been out of co-pay funds since the middle of September.  I [...]

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Multiple Myeloma 2017 Update – Why Do People Beat the Average Myeloma Life Expectancy Prognosis? Or How To Improve Your Multiple Myeloma Survival Rate!

I updated this post more than two years ago, and it has been very helpful to many in the myeloma patient community  One thing has become very clear to me, the pace of change and progress for myeloma has become exponential.   This is a very good thing!  We have had 4 drugs approved for myeloma [...]

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Who Knew Feb 28th Was RARE DISEASE DAY? I Didn’t! We Must COME TOGETHER!

BY GARY PETERSEN I was contacted by Anna Suarez who wanted to start a partnership to help to obtain visibility for rare diseases like myeloma and mesothelioma.  It is often said there is strength in numbers, and unfortunately rare and orphan diseases do not by themselves have the numbers, but together we do.  Below is [...]

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Some People are Climbing Mountains for Myeloma, I’d Rather Take a BEACH WALK!

BY GARY PETERSEN Myeloma Crowd has a Beach Walk on March 4th, 2017 to raise funds for two immunotherapy myeloma research projects which have great potential but do not fit into the normal model for new drug development.  I am not saying this is in any way an indictment of drug companies, because I [...]

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ASH 2016: A Meeting of the Minds! Myeloma Specialists Come Together in Greater Consensus.

BY GARY PETERSEN Ten years ago, when I was diagnosed, there were few drugs available and no common understanding of what treatment was best for different patients.  Revlimid and Velcade were not approved yet and every myeloma specialist (people who treated a fair number of myeloma patients) could agree on very little.  One transplant vs. [...]

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ASH 2016: Minimal Residual Disease in Relapsed or Refractory Myeloma

BY GARY PETERSEN Two recent clinical trials were performed on relapsed or refractory myeloma patients that showed solid progress. In the POLLUX trial, investigators compared daratumumab/Revlimid/dex to Revlimid/dex alone. In the CASTOR trial, the combination compared daratumumab, Velcade and dex to Velcade/dex alone. Adding daratumumab to both of these regimens improved progression free survival and overall [...]

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The Rosetta Stone For A Myeloma Cure? Early Treatment Of High Risk Smoldering Myeloma!

Dr. Irene Ghobrial of Dana Farber Cancer Institute has said a clinical trial must show an overall survival (OS) advantage to justify the treatment of myeloma in the high risk of progression smoldering patient population. Many trials for the smoldering population have been conducted with no OS advantage, until Dr. San Miguel's group in Spain [...]

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How To GREATLY Improve The High Risk Myeloma Survival Rate!

High risk myeloma has historically had a very bad prognosis, with a stated overall survival of just 2 years.  Few if any advances have been shown to overcome these high risk genetic features, however maybe the new efforts in data mining (Big Data) might be one way to identify regimens, which improve survival, but are [...]

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Myeloma – How To GREATLY Improve The High Risk Myeloma Survival Rate!

High risk myeloma has historically had a very bad prognosis, with a stated overall survival of just 2 years.  Few if any advances have been shown to overcome these high risk genetic features, however maybe the new efforts in data mining (Big Data) might be one way to identify regimens, which improve survival, but are [...]

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Multiple Myeloma – Why Does Survival Depend On Where You Live?

BY GARY PETERSEN I had known myeloma was more prevalent in the USA and Great Britain than it was in say China or Saudi Arabia, but had felt the difference might just be a result of differences in population, age, and reporting. But then I was sent the image above. It uses an age [...]

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Myeloma End Game: Improved myeloma prognosis, life expectancy, and CURE Through Earlier Diagnosis and Intervention!

BY GARY PETERSEN I HAVE A MYELOMA DREAM! That all myeloma patients are screened and found before any end organ damage, that all high risk patients are found at MGUS or smoldering and treated and cured before the clones become untreatable, that all low risk smoldering patients are followed treated and cured before CRAB symptoms [...]

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Did You Know?? Major Changes Are Coming To Medicare For All Cancer Patients!

BY GARY PETERSEN Most people are unaware of what is happening with the payment system for Medicare Part B, or the new ICER report which may limit your cancer treatment options, but they are just on the horizon.  These changes have been initiated to confront the out-of-control price increases for existing cancer drugs and the [...]

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Will The ICER Report Leave Cancer Patients Out In The COLD?

BY GARY PETERSEN I have never seen such a viral negative patient response like the one I see centered around the new ICER myeloma report.  ICER(Institute for Clinical and Economic Review) put out a 138 page report intended to place a value on various treatment regimens for relapsed, refractory multiple myeloma.  It was an attempt [...]

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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

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 [...]

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Multiple Myeloma Survival Improved To 5 Years! Yeah!!! And My Future Survival Prediction For the Next Two Years.

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 [...]

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Pat’s Myeloma Survival School – What An Amazing Weekend! Part of the Myeloma Miracle.

BY GARY PETERSEN 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 [...]

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

BY GARY PETERSEN March is Myeloma Awareness Month! First and foremost, I love the LLS (Leukemia and Lymphoma  Society), and 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 and fund a considerable amount of research.  [...]

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

BY GARY PETERSEN 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, [...]

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Myeloma Patient Advocates In Action. Advocating For You!

BY GARY PETERSEN The Multiple Myeloma Community has always had a unique synergistic combination of myeloma specialists, researchers, patient advocates, myeloma institutions (IMF, MMRF, MCRI, LLS and MMORE), and pharmaceutical companies.  Now more than ever, patient and patient advocates have been asked to contribute their ideas, concerns, and recommendations to improve the myeloma patient experience [...]

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Is The CANCER MOONSHOT The Only Solution To An Inadequate And Outdated System?

BY GARY PETERSEN First we need to look at the current system and decide if it works well or not.  Based on a recent analysis by Tufts University, the cost of a new drug is 2.6 billion dollars.  MedicineNet.com reports it takes 12 years for an experimental drug to travel from the laboratory to your [...]

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Holiday Blessings For Myeloma Patients? Now More Than Ever!

In the twelve years between 2003 and 2011 we had 4 drugs approved for the treatment of multiple myeloma.  This was 4% of the total of all oncology drugs approved during that period, and because myeloma is only 1% of all cancers you could think we were blessed to have drug approvals 4 times the [...]

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What Did ASH 2015 Mean For The Myeloma Patient? HOPE!

BY GARY PETERSEN There was so much great news that came out of ASH 2015, and the volume of technical information was more than enough to get your head to spin, It was easy to become overwhelmed with the complexity and detail.  It continues to support my belief that myeloma specialists are very knowledgeable about [...]

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ASH 2015 – The Immunotherapy Revolution in Multiple Myeloma

As the name implies, there seems to be great excitement and hope in using the patients' own immune system to fight and ultimately cure myeloma. For the most part, chemotherapy has been the primary weapon in the myeloma specialists' treatment toolbox and immunotherapy was considered “Not Ready For Prime Time”. I attended an ASH symposium [...]

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The Multiple Myeloma Immunotherapy Revolution – ASH 2015

As the name implies, there seems to be great excitement and hope in using the patients' own immune system to fight and ultimately cure myeloma. For the most part, chemotherapy has been the primary weapon in the myeloma specialists' treatment toolbox and immunotherapy was considered “Not Ready For Prime Time”. I attended an ASH symposium [...]

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ASH 2015 – Global Advances in Myeloma: Providing the Best Options for Treatment in 2015

BY GARY PETERSEN I attended a symposium chaired by Dr. Brian Durie which centered on providing information on the best options for therapy in 2015. The focus of the session was on debates around several questions. The panel was superior, with member being some of the very best myeloma specialist in the world. There was [...]

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Myeloma Patients Can Be Thankful – Let Me Count The Ways

We are in the Holiday Season, and I believe the myeloma patient community has much to be thankful for. What can someone with cancer be thankful for? 1) Our dedicated myeloma researchers and specialists, whose selfless service to the myeloma patient community, is second to none. They are extremely active at major hematology forums like [...]

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The Myeloma Road Map To Improved Survival – GEP (Gene Expression Profiling)

What’s in your Genes? You've been diagnosed and told what stage of Multiple Myeloma you are in based on your tumor burden. Now your doctor will probably order some genetic testing to understand your “tumor biology.” Every person’s tumor biology is unique and it is imperative for you and your doctor to know as much [...]

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God Helps Those Who Help Themselves! Can Myeloma Patients Help Themselves?

  BY GARY PETERSEN Some patients may not agree with this, but if nothing changes, nothing will change. The consensus opinion of myeloma specialists, which is confirmed by data from the NCI (National Cancer Institute), is that 85 to 90% of myeloma patients will not be cured and will one day become high risk [...]

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Can Myeloma Patients Save Themselves? Could Social Media Help?

BY GARY PETERSEN For years many myeloma specialists concluded multiple myeloma was incurable.  But now many specialists believe 10 to 15% of patients have been cured, and those not cured  will live for 8 years or more if they do not have  high-risk disease. For the 15% who are high risk at diagnosis and [...]

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Multiple Myeloma – Why A Myeloma Specialist Is Not Optional But A MUST HAVE!

Do not have a doctor directing your care who is at the start of the myeloma learning curve. Recently, Dana Holmes the editor of a smoldering myeloma patient web site had a blog post which outlined the importance of having a myeloma specialist on your team even during the early smoldering phase of the [...]

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Multiple Myeloma 2015 Update – Why Do People Beat the Average Myeloma Life Expectancy Prognosis? Or How To Improve Your Multiple Myeloma Survival Rate!

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 including a new section on Early Diagnosis and Treatment and hope that it helps to assist you in your myeloma journey. The SEER (Surveillance, Epidemiology, and [...]

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Outstanding New Myeloma Survival Rate Prognosis And Life Expectancy! Myeloma Patients Can Be Cured Today! Just A Question Of Durability?

BY GARY PETERSEN Three recent publications on treatments for newly diagnosed patients have caught my attention.  The first of which is the French Myeloma Intergroup study. This multi-center trial of RVD (Revlimid, Velcade, and Dex) with Transplant, RVD Consolidation, and Revlimid maintenance showed exceptional results for newly diagnosed patients.  With a median follow-up of 39 [...]

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My Myeloma Journey, What Does Faith Have To Do With It? Godwink, Wink, Wink, Wink ….. Or Just a Series of Convenient Coincidences?

  BY GARY PETERSEN I do not know about you, but as I age and confront my mortality, and myeloma certainly makes us understand mortality, I find that I get closer to God! On this website I oftentimes give the sign off "Good Luck and May God Bless Your Family's Myeloma Journey" and I have received [...]

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Dateline NBC: Multiple Myeloma -Tom Brokaw's Life Interrupted?

If you have not seen Tom Brokaw's Dateline NBC special of his multiple myeloma journey, you should. It may have done more to shine a light on a disease that has been invisible to the general population. A study in the UK uncovered only 3% of the public have ever heard of myeloma. Everyone has heard of [...]

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Tom Brokaw Cancer Treatment for Multiple Myeloma & Book Life Interrupted on Dateline NBC

If you have not seen Tom Brokaw's Dateline NBC special of his multiple myeloma journey, you should. It may have done more to shine a light on a disease that has been invisible to the general population. A study in the UK uncovered only 3% of the public have ever heard of myeloma. Everyone has heard of [...]

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MyelomaSurvival.com Predicts the National Cancer Institute Will Show Myeloma Survival Has Improved by 25%! But Carnac sees a 50% Improvement!

BY GARY PETERSEN Every  April 15 is not only tax day, but it is the date when the National Cancer Institute publishes the new year's data for survival for multiple myeloma. One of the short falls to this publication is that they publish in April of 2015, and the earliest information is for 2011.  They [...]

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Multiple Myeloma Awareness, Education, and Funding – The Keys To Improved Survival Rates, Good New Bad News?

March is Multiple Myeloma Awareness month, and the myeloma patient community has much to be thankful for, however there are still some major challenges to overcome.  And I think we can sum them up into Good News and Bad News.   Bad News then Good News The Bad News is that according to a [...]

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