Beautiful Fernandina Beach, Florida

Friday, March 20th – NOTE CHANGE: SLIDERS FIRST FLOOR
3 – 4 PM Registration – Sliders Seaside Grill
4 PM Welcome! Host Pat Killingsworth – Sliders Second Floor
4:20 PM Takeda presentation
5:15 PM John Killip, DDS—Medication Related Osteonecrosis of the Jaw
6 PM Dinner – Ocean Club
6:30 PM Dr. Asher Chanan-Kahn—Head of Hematology, Mayo Clinic- Jacksonville
7:15 PM Danny Parker – Myeloma Nutrition
7:45 PM Haydon Fouke—Benefits of Medical Marijuana
8:15 PM Danny Parker – Meditation
9:00 PM Social Hour

Saturday, March 21st

7:30 AM Meditation on the beach – Danny Parker (Half way between Sliders and Ocean Club)
8:00 AM Beach Walk Registration – Ocean Club patio
9:00 AM Beach Walk Start
11:30 AM Buffet Lunch – Sliders 2nd floor
Noon MMCentral—Celgene Pharmaceuticals
Silent Auction Bidding Open
12:45 PM MMRF—CoMMpass Update
1:15 PM IMF Overview
1:40 PM Myeloma Treatment from a Patient’s Perspective: Town hall meeting – Q/A with Dr. Noopur Raje, myeloma researcher and specialist at Massachusetts General Hospital
3:00 PM Sponsor forum: It’s a team effort: Takeda and other drug companies working hard to help keep us alive and improve our quality of life
3:30 PM Myeloma Book Club. Q/A and meet authors Pat Williams, Dave Visel and Pat Killingsworth
4:30 PM Dr. Noopur Raje: Hopeful new myeloma therapies
5:00 PM Cocktail Hour. Time for a quiet walk on the beach
6:30 PM Dinner – Sliders 2nd Floor
Welcome! Pat Killingsworth
Jenny Ahlstrom – Crowd Care Foundation: Crowdfunding Myeloma Initiative
7:30 PM Pat Williams (VP Orlando Magic and myeloma survivor) Keynote Address
Silent Auction Closed
8:30 PM Reflections on a great day! Silent auction results

Sunday, March 22nd

8:00 AM Spiritual awakening on the beach – Danny Parker (Beach side of Ocean Club
9:00 AM Brunch buffet – Sliders 2nd Floor
9:30 AM Research update: Overcoming myeloma drug resistance – Brian VanNess, University of Minnesota
10:15 AM Journey Partners presentation: Sanofi
11:00 AM Beach Party Q/A and critique. How can we improve things for next year? What topics would you like to see covered?
11:30 AM Meet you on the beach!

The gang was all here, IMF, MMRF, MCRI, Dr. Raje(Mass. General), Dr. Chanan-Kahn(Mayo), Brian VanNess,  Danny Parker, plus many more and also the generous sponsors of Takeda and Celgene.  And most of all I must mention a great group of walkers who, as patients, walked though pain to raise money, and for others who walked with love in their hearts to help fund research.  A few of the pictures I took follow.  Good Luck and May God Bless your families myeloma journey.  What a caring, hopeful, and outstanding group of people. 

Dr. Ghobrial is an Associate Professor of Medicine at Dana-Farber Cancer Institute at the Harvard Medical School in Boston, Massachusetts. She is a physician Scientist who specializes in the field of Multiple Myeloma and Waldenstrom Macroglobulinemia specifically in the precursor conditions of MGUS and Smoldering Myeloma. Dr. Ghobrial received her MD in 1995 from Cairo University School of Medicine, Egypt. She completed her Internal Medicine training at Wayne State University, Mich., and her Hematology/Oncology subspecialty training at Mayo Clinic College of Medicine, Minn. She is on many Dana-Farber and ASH committees.

She reviews abstracts for the American Association of Cancer Research and top publications such as Blood, Lancet, and the Journal of Clinical Oncology just to name a few. She’s on the editorial board of the American Journal of Blood Research. Dr. Ghobrial reviews grants for the NIH, the Leukemia & Lymphoma Society and the MMRF and has won numerous awards including a Dana-Farber Clinical Investigator Award, the Robert Kyle Award for her work in Waldenstrom and more. She particularly focuses on the role of the malignant bone marrow niche in disease progression from early precursor conditions like MGUS/smoldering myeloma to active myeloma.

Dr. Ghobrial and her lab examines how myeloma uses a process of cell dissemination to determine biological changes that occure during progression in myeloma. She seeks to understand that progression process from inactive to an active state. In addition, her laboratory research data has been rapidly translated to innovative investigator-initiated clinical trials. This lab has conducted over ten phase I and II clinical trials. Their studies on myeloma cell trafficking have been translated to the first chemosensitization trials in patients with Myeloma.

In addition, she is the co-leader of the first consortium of clinical trials for blood cancers in collaboration with the Leukemia & Lymphoma Society to form the Blood Cancer Research Partnership, a consortium of 11 community oncology sites coordinated by Dana-Farber. She has initiated a new clinic for the Prevention of Progression in Blood Cancers where patients with precursor conditions such as MGUS, early MDS and early CLL will be monitored before disease progression to see how the clonal evolution happens during disease progression. She just joined the MCRI as a member of the Scientific Advisory Board. Sounds like she is a SUPERSCIENTIST.

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

Funding for myeloma is one half of the average of funding of all cancers per life lost, and funding for all cancers continues to fall based on funding cuts to the National Institute of Health.  Funding keeps falling for myeloma research each year, and it can only be made up through the efforts like this and all other myeloma fund raising initiatives.  Mambo for Myeloma is one of the few which is supported by the IMF, MMRF, MMORE, and MCRI. These are all national myeloma organizations which are key to education, research, treatment, and assistance to the myeloma patient community. 

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


Lyrics to "Back in Stringent CR"

I have Myeloma  what can that be?
Couldn't sleep at all last night
Wondering what the future held for me
It gave this man a terrible fright

I want to be in stringent CR
and you don't know how lucky you are, boy
to be in  stringent CR

Been in the hospital so long I know the place
Gee, it would be great to be back home
Melphalan, Dex, it seems like a never ending race
With myeloma I feel so all alone

I want to be in stringent CR
and you don't know how lucky you are, boy
to be in stringent CR

Stem Cell Transplant really knocked me out
It leaves my senses behind
But when I hit sCR
And cure is  on my mind
Oh come on

I want to be in stringent CR
and you don't know how lucky you are, boy
to be in stringent CR

Stem Cell Transplant really knocked me out
It leaves my senses behind
But when I hit sCR
And cure is  on my mind

So raise awareness and fund research find a cure
So raise awareness and fund research find a cure

I want to be in stringent CR
and you don't know how lucky you are, boy
if you can just get into stringent CR

Oh just Mambo, Mambo, Mambo  for Myeloma,

Doooo,  Woooo,  Ohhhh

I had the opportunity to be at ASH (American Society of Hematology)  in San Francisco and went to one of the more research oriented presentations which was moderated by Dr. Gareth Morgan and featured a presentation by Dr. Irene Ghobrial of the Dana Farber Cancer Center.  Dr. Ghobrial discussed the effect the bone marrow micro-environment  has on the progression of multiple myeloma, and ways to make this micro-environment inhospitable to tumor growth.  Her research has shown this micro-evironment has been modified in mice with exceptional results.  Translated to success in  human trials, this could be a the potential CURE.  To view a link to the abstract CLICK HERE.  Just be aware that this link may make your eyes glaze over.  Dr. Ghobrial will be dscussing this in a patient friendly manner at the February 12th  Myeloma Cure Panel which will broadcast at 6:00pm EST.  The broadcast is titled Early Treatment of Myeloma with Dr. Irene Ghobrial, and you can get the details on how to listen live or enter your questions for the doctor is you CLICK HERE.  If you want to call in to listen you can call in a few minutes prior to the broadcast at the number (718) 664-6574 or listen on line by  CLICKING HERE.


For me this was one of the most exciting revelations from the ASH meeting.  Most other presentations talked about new drugs used at relapse which may give you one or two years of added life, but this was different, this was the possibility of cure for all high risk MGUS and Smoldering patients.  With the potential to prevent relapse after initial therapy or after relapse. This I believe it is the future of myeloma treatment and cure, and to say this was a can't miss panel would be a huge understatement.

 Also, like our individual insurance companies in the US, each country can choose to allow or disallow treatments based on each individual countries funding and a determination of the value equation of the treatment. But there are a few things that make the "Do More With Less" so very selfless and outstanding.  First, myeloma life expectancy in Europe and the US are equivalent, however the EU spends one half that of the USA.  The US spends $8500 per capita, while the top 12 countries in the EU spend half of that.  In the case of Italy, they spend $3100 per capita or about one third of that in the USA.  In addition, the average specialist in the USA earns $230,000 per year as compared to $84,000 in Italy.  So as you can see, Italian myeloma specialists could move to the USA and make 2.7 times more than what they earn in Italy.  I often liken myeloma specialists to Super Heroes, or almost saintly.  In the case of Dr. Palumbo, his ability to achieve exceptional results with all the limitations and challenges in his way, I think it is justified.  Pat Killingsworth wrote an article about this broadcast and said, "I have watched him (Dr. Palumbo) make dozens of presentations at ASH and ASCO.  It wouldn’t be a stretch to call Dr. Palumbo the preeminent multiple myeloma specialist in Europe." And after listening to this broadcast Pat said his major takeaway was, "Dr. Palumbo makes the most out of what he's got!  Outstanding fine tuning and excellent myeloma care despite not having access to cutting edge drugs." An example of this delay in new drug approvals you need to look no furthur than the difference in approval for Revlimid (lenalidomide), where there was almost a three year delay in approval for Europe.

On June 29, 2006, lenalidomide received U.S. Food and Drug Administration (FDA) clearance for use in combination with dexamethasone in patients with multiple myeloma who have received at least one prior therapy.

On 23 April 2009, The National Institute for Health and Clinical Excellence (NICE) issued a Final Appraisal Determination (FAD) approving lenalidomide, in combination with dexamethasone, as an option to treat patients who suffer from multiple myeloma who have received two or more prior therapies in England and Wales.


Some of the major points which I took away from his broadcast were as follows:

- The myeloma effort is an international effort and we all learn from each other, and international collaboration is essential to its success.

- Message number one for the audience is an important and critical message.  Because myeloma is such a rare and complex disease patients should find a myeloma specialist who sees more than 100 myeloma patients per year.  Anything less, you may have a great doctor but they lack the necessary experience to adequately treat myeloma. 

- Europe is moving towards more specialties where doctors will handle only one of the hematologic diseases like myeloma, leukemia, or lymphoma.

- Although the Allo transplant is used 7 times as often in Europe, it is not the standard of care for newly diagnosed.  It is used in the context of clinical trials, and then only in young patients and those with early relapse. The allo transplant has 10 to 15% death rate in the first 100 days, and studies show no difference in outcomes between the allo and the auto.  We hope for a graft vs. myeloma effect which is good, but could also have graft vs. host impact which is bad.  So for the individual patient it is like Russian Roulette.

- Auto Transplant is used more in up-front treatment in Europe, whereas the US seems to be reluctant.  Two trials clearly indicate the use of auto transplant at diagnosis provides improved response duration, and overall survival.  Auto transplants must be delivered at diagnosis, and Dr. Palumbo utilizes tandem transplants.

- Fifty percent of patients who collect stem cells do not use them.  Co-morbidity causes 15% of this 50%, a rural location not close to a transplant center 15%, and the doctor's choice to transplant or not 20% of patients. 

- Patients and doctors in USA see the FDA as slow and ponderous, however the EMA (European Medicines Association) is far less effective, as can witnessed by the slow new drug approval.  Europe does however have a more homogenous treatment approach where the drugs, transplants, and visits are free to the patient.  The EMA determines that the drugs are effective and safe, and then each country decides whether to approve it for use.

- Dr. Palumbo changes the treatment options by using a scale of Fit, Unfit, and Frail.  Some items which would dictate a modified approach would be a patient over 65 with co-morbidities, patients over the age of 80 where 81 is unfit, patients who have limited mobility, and those with compromised cognitive function may not allow the patient to take treatments as scheduled. 

- In Europe recruitment for clinical trials may be easier for a few reasons.  In a public health care system salaries are unchanged by treatment decisions, and patients have more faith the doctors will do the right thing.  In the US there is more of a do- it- yourself mindset, where in Europe care is delegated to others, or as Dr. Palumbo called it the "BIG PA PA".  He believes Europe is beginning to shift to be more like the US.

- Dr. Palumbo believes maintenance should be ongoing as long as there are no adverse reactions.  The RD (Response Duration) is shown to be 1 to 1 1/2 years longer, whereas the OS (overall survival) advantage is small.

- Dr. Palumbo believes the groundbreaking work is being conducted in the area of mono clonal antibodies.  He believes these will be game changers.

- He is of the opinion that there is no effective treatment as yet for high risk disease.  For both high risk and low risk patients he will use VTD and two stem cell transplants and maintenance.  He would use VRD-PACE, but this combination is not reimbursed.   Because the current cure rate is between 15 to 25%, he spends more time on control rather than cure. 

- He believes in early treatment of smoldering myeloma, with a monoclonal antibody added to VRD, and the advantages outweigh the possibility of the development of more aggressive clones.  

Dr. Palumbo has proven he and his team can do more with less, and we thank him for his service to the myeloma patient community.  A brief bio of Dr. Palumbo follows:

Dr. Antonio Palumbo (MD)

He received his medical degree from the University of Torino - Italy; served his residency in internal medicine and held a fellowship in hematology/oncology at the University of Torino.

Before his current position as Chief of the Myeloma Unit of the Department of Oncology, Division of Hematology, University of Torino, Dr. Palumbo was Research Associate at the Wistar Institute, University of Pennsylvania. He specialized in hematology malignancies and medical oncology and has clinical and research interest in plasma cell dyscrasia.

He is a member of Board of Directors of the International Myeloma Society (IMS), of the Advisory Board of the International Myeloma Foundation (IMF) and president of the European Myeloma Network Trial Group (EMNTG).

Dr. Palumbo is also leading several multidisciplinary projects on the molecular biology and the pathogenesis of multiple myeloma, and on the development of biological markers to predict clinical outcome. He is the principal investigator of many national and international trials investigating the role of new drugs and second-generation novel agents for the treatment of young and elderly patients with multiple myeloma, both at diagnosis and at relapse. The results achieved by his team and him contributed to prolong survival of patients and to improve their quality of life.

In Recognition of Significant Contributions to Myeloma Research and Patient Care International Myeloma Foundation Honors Dr. Antonio Palumbo with 2014 Robert A. Kyle Lifetime Achievement Award

In addition to membership in numerous professional organisations, Dr. Palumbo has authored more than 100 publications in peer reviewed journals as well numerous abstract and several textbooks chapters. His current research focuses on the pathogenesis and treatment of multiple myeloma.

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

I belong to the North Florida International Myeloma Foundation Support Group, and I joined it soon after diagnosis to help in my myeloma education.  Little did I know that it would turn into much more  You build relationships with other myeloma patients, but maybe just as important is that the caregivers get to interact with other caregivers.  Friendships blossom, laughter is abundant, kidding becomes an art form, and these meetings can be great fun.  Last night our group had our Christmas/Holiday party in St. Augustine to view the Holiday Lighting of the city in one of the trolleys.  We then went to dinner at an excellent restaurant.  As one new caregiver said who had not attended our meetings before, "Now I know what a fun group this is, I will be back!"  Yes it is a FUN GROUP!

In the picture at the right you notice a head growing out of the waiter's shoulder.  This is Anne Pacowta.  She and Dianna Chiles are Co Support Group Leaders.  They both were caregivers and support group co-leaders with their husbands, who both have lost their battle with this disease.  This makes their selfless service to this group so heartfelt and cherished.  We love our group leaders!  If you want to join the Jacksonville Support Group you can email Anne at  [email protected] or Dianne at [email protected]. 

In addition, one of our members made a Mambo for Myeloma song which the group will be Mamboing to at the February meeting.  It will be a Support Group Mambo Challenge, so I will blog about it in February.   The words go to the tune by the Beatles "Back In The USSR,"  but the new title is "Back In Stringent CR".   Hope you enjoy the song.  The words are as follows:


Back in Stringent CR

I have Myeloma  what can that be?
Couldn't sleep at all last night
Wondering what the future held for me
It gave this man a terrible fright

I want to be in stringent CR
and you don't know how lucky you are, boy
to be in  stringent CR

Been in the hospital so long I know the place
Gee, it would be great to be back home
Melphalan, Dex, it seems like a never ending race
With myeloma I feel so all alone

I want to be in stringent CR
and you don't know how lucky you are, boy
to be in stringent CR

Stem Cell Transplant really knocked me out
It leaves my senses behind
But when I hit sCR
And cure is  on my mind
Oh come on

I want to be in stringent CR
and you don't know how lucky you are, boy
to be in stringent CR

Stem Cell Transplant really knocked me out
It leaves my senses behind
But when I hit sCR
And cure is  on my mind

So raise awareness and fund research find a cure
So raise awareness and fund research find a cure

I want to be in stringent CR
and you don't know how lucky you are, boy
if you can just get into stringent CR

Oh just Mambo, Mambo, Mambo  for Myeloma,

Doooo,  Woooo,  Ohhhh