fbpx
Gary Petersen

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

Miracles in Myeloma Development: Rare Success for a Rare Disease

In the United States the NIH (National Institute of Health) defines a rare or orphan disease as one which has fewer than 200,000 people. There is an estimated 6000 to 7000 rare diseases.  I recently read a report about the success of the 1983 Rare Disease Act.   It has been instrumental in bringing new drugs [...]

Read More

How to Pay For Your Myeloma Treatment? (Part II: When You Have Private Insurance Or No Insurance)

So you have multiple myeloma?  Most people have never heard of myeloma, so if you are a typical patient, it's usually a shocking and overwhelming diagnosis. It becomes a journey, including a maze of  financial worries.  This blog post is meant to assist you in getting through this financial maze! Usually, people obtain private insurance [...]

Read More

ASH 2018: Shaji Kumar, MD of the Mayo Clinic Selects His Top 5 Abstracts

There  are 828 abstracts listed for multiple myeloma for ASH 2018.  If you want to know which abstracts are most important, why not ask some of the most talented myeloma specialists in the world?  And that is just what we did.  Dr. Shaji Kumar was kind enough to list his top 5 in their order [...]

Read More

ASH 2018: Best Kept Secret at ASH in Multiple Myeloma

I believe this might be the best kept secret at ASH 2018. Abstract 801 - Carfilzomib, Pomalidomide and Dexamethasone (KPd) in Patients with Multiple Myeloma Refractory to Bortezomib and Lenalidomide. the EMN011 Trial   Pieter Sonneveld, Professor of Hematology and head of the Department of Hematology at the Erasmus MC Cancer Institute and Professor of Hematology at the [...]

Read More

ASH 2018: Dr. Rafael Fonseca of the Mayo Clinic Selects His Top 5 ASH Myeloma Abstracts

Dr. Fonseca of Mayo Clinic, Phoenix is a world leader in myeloma research and treatment.  Dr. Fonseca has chosen his 5 Best of the Best myeloma abstracts of the 828 myeloma abstracts presented.   Dr. Fonseca is the Getz Family Professor of Cancer and Professor of Medicine, Mayo Clinic College of Medicine. He is the [...]

Read More

ASH 2018: Is Venetoclax Effective Against High-Risk Multiple Myeloma?

Luciano J Costa, Associate Professor of Medicine Blood and Marrow Transplantation and Cell Therapy Program, University of Alabama Birmingham presented the results of a phase 2 clinical trial for Venetoclax in combination with Carfilzomib and Dexamethasone.   In 2016 the FDA approved Venclexta (venetoclax) for the treatment of patients with chronic lymphocytic leukemia (CLL) who have a chromosomal [...]

Read More

ASH 2018: Poster Sessions at ASH Can Share Some Great Information!

For most of us, we want to be at a football game rather than see pictures of the game.  ASH is much the same when it comes to the Oral vs. Poster sessions.  If you attend some of the many meetings at ASH, even the ones at 7:30 am, the events can be standing room [...]

Read More

ASH 2018: Top 5 Abstracts from 7 Myeloma Specialists!

Michael Thompson, MD, PhD, at the Vince Lombardi  Cancer Clinic in Milwaukee, WI is board certified in hematology and oncology. He is an active clinical researcher whose interests include hematologic or blood cancers (lymphoma, myeloma, leukemia and myelodysplastic syndrome).  When my web site myelomasurvival.com was started in 2012, one of the first patients who called [...]

Read More

ASH 2018 Is An Amazing CAR show! Chimeric Antigen Receptor (CAR)

It is interesting to note that just 10 years ago in 2009 there was just 9 CAR T abstracts in a total of 5176 total abstracts presented at ASH 2009.  It has also taken 10 years to get just two FDA approved CAR T treatments approved.  However for ASH 2018 there are 423 CAR T [...]

Read More

ASH 2018: Early Relapse After Transplant – A New Indicator of Outcomes for Myeloma Patients?

Doctors constantly talk about "prognostic factors" in determining whether a myeloma patient is high or low risk.   Commonly, myeloma genetics tests like cytogenetics tests (FISH), gene expression profiling (GEP) and International Myeloma Staging Systems have all been used because higher risk genetic features have been identified. This can include features on the myeloma cells such [...]

Read More

ASH 2018: Carfilzomib Triplet Combinations Compared

Carfilzomib is a newer proteasome inhibitor that is now being used in the myeloma clinic. One meeting session compared three different uses of carfilzomib for newly diagnosed multiple myeloma patients: Kyprolis/Revlimid/Dex (KRD) with transplant VS. Kyprolis/Cytoxan/Dex (KCD) with transplant VS. 12 cycles of KRD with no transplant Which one would offer the longer remissions?   [...]

Read More

Dr. Parameswaran Hari of the Medical College Of Wisconsin Selects His top 6 ASH 2018 Abstracts

When I first started my web site myelomasurvival.com I asked myeloma specialists for the life expectancy of their newly diagnosed myeloma patients.  Of all those who provided information, Dr. Parameswaran Hari had some of the best survival rates in the USA.  Dr. Parameswaran Hari is Professor of Medicine, Section Head - Hematological Malignancies and BMT, [...]

Read More

Dr. Ola Landgren Of MSKCC Selects His Top 5 ASH 2018 Myeloma Abstracts

If you wanted to find out what is the best treatment strategy for myeloma,  ask an expert myeloma specialist.  We used this same principle to identify the best of the best ASH 2018 myeloma abstracts.  We're releasing our Best of ASH series from myeloma experts early - just days in advance of the largest hematology [...]

Read More

Killing Myeloma Through Targeted Therapy. It’s What Our Body Would Do If It Could!

As I look over the myeloma treatment landscape, it is almost impossible not to be overly enthusiastic. In the beginning there was just Alkylating  agents, steroids and Stem Cell Transplant.   Then the novel drugs made the scene with Thalomid, Velcade,  followed by second generation proteasome inhibitors and IMiDs, and finally monoclonal antibodies and CAR [...]

Read More

Changing Our Approach to Myeloma Care Changes Outcomes

Einstein once said that insanity is doing the same thing over and over and expecting a different result.  We patients frequently look at our symptoms of exhaustion, bone and joint pain, anemia, and kidney issues as part of the aging process, and often our general practitioners look at us in a similar manner.  In general, [...]

Read More

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?  [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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?  [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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. [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 in [...]

Read More

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 [...]

Read More

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.  [...]

Read More

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, [...]

Read More

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 [...]

Read More

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.  reports it takes 12 years for an experimental drug to travel from the laboratory to your medicine [...]

Read More

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 [...]

Read More

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 [...]

Read More

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 [...]

Read More