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Sunday's sessions of the 54th Annual American Society of Hematology meeting was filled with Oral Presentations by Myeloma researchers worldwide. Repeated themes from previous days include:

  • Myeloma is not one disease
  • Myeloma is different from patient to patient and
  • Myeloma manifestation/clones change over the life of a single patient
  • Risk stratification and disease staging need to be combined to predict overall survival and design optimal treatment

New themes that I heard today include:

  • There is better understanding of not only patients but also the Myeloma's gene profile expression.
  • As a result, individualization of treatment is in the near horizon
  • Targeting the Myeloma is important. Targeting its micro environment is as important
  • Helped with Novel treatment regiments, the 5 year survival of patients older than 65 has almost doubled from 2006 to 2010 compared with 2001 to 2005
  • Pomolidomide is an important drug. It seems to work even when other IMiDs stop working

Dr. Durie summarized the Dynamic Drug Development Landscape as follows:

  • Existing Drugs -> New Combination
  • New Drugs -> Coming Along
  • IV <-> Injection <-> Oral

At the end of the day, the International Myeloma Foundation (IMF), with Myeloma Canada and the IMF Latin America, held a Journalists' Workshop. There were many great discussions by Drs. Durie, Paul Richardson, Xavier Leleu and Robert Orlowski. Dr. Orlowski focused on Carfilzomib while Dr. Leleu focused on Pomalidomide. Dr. Richardson drove the need to prevent Myeloma disease from running away. He indicated because Myeloma increasingly becomes resistant to treatment its best to get as best an initial CR or VGPR as possible. As such there is no need to keep your best treatment for later.

He used an interesting analogy and said "In the absence of a mongoose we need to keep the snake in the basket".

Just like during yesterday's award ceremony, patient stories reminded Doctors and Journalists that this is not a theoretical scientific discussion but rather a life and death balancing act.

The major message of the evening was delivered by Susie Novis, co-founder and president of the IMF. Susie indicated there are over a million patients living with Myeloma worldwide. Of these over 40% of them are younger than 65 and there is currently an 8 year old Brazilian who is diagnosed with Myeloma. While rapid advances are being made in the standard of care for Myeloma, that standard of care is NOT global. She asked why treatment should stop at borders when Myeloma doesn't.

Sharing the Hope!

Yelak from the North Texas Myeloma Support Group!


Saturday (Day 2) started at 6:30 a.m. with a working breakfast of the International Myeloma Working Group. Lead by Dr. Brian Durie's uncanny ability to inspire trust and instigate discussion, the group discussed various guidelines and publications that were in the works. One of the objectives of these guidelines is to make Myeloma treatment uniform across the globe. Besides the completeness and holistic nature of the subjects discussed, it was impressive to see physicians (160) and researchers from different institutions and 31 countries coming together and collaborating to advance Myeloma research worldwide.

Today's ASH News Daily newspaper had an interesting article on Myeloma - specifically "The rule of Three to Treat Myeloma." It suggested that things that come in three are funnier, more satisfying or more effective than other number of things. While at first I thought it was building on Jim's write-up from yesterday regarding the use of three drug combination being more effective than a two drug combination or less toxic than a four, it was actually suggesting that the combination of Autologous Stem Cell Transplant (ASCT), Proteoasome inhibitors (Velcade, Carphilzomib) and immune modulatory drugs (Thalomid, Revlimid Pomalidomide) are changing the treatment, care and quality of life of Myeloma patients.

It is always refreshing to see Dr. S. Vincent Rajkumar of the Mayo Clinic challenging traditional thinking. During the first educational session of the day, Dr. Rajkumar indicated the goal of treatment should be increasing the quality and length of overall survival (OS) and not just the statistical improvement of progression free survival (PFS). He also reinforced the concept that Myeloma is a holding term for a conglomeration of different subtypes each requiring its own diagnosis, treatment and forecasting strategies.

The theme of the afternoon poster sessions was around the use of Revlimid or Velcade with or without high/low does Dex and/or with other investigational drugs to enhance efficacy of  relapsed refractory Myeloma patients. While most of them were promising, none, in my opinion, were breakthroughs.

Visiting the Millennium, Celgene and Onyx booths at the Exhibit hall, it was great to see the future looking, ambitious and personalized goals of these companies. Millennium indicated "WE ASPIRE TO CURE CANCER," Celgene's motto said "COMMITTED TO PUTTING PATIENTS FIRST WORLD WIDE" and Onyx had a display that said, "We share the hopes, dreams and worries of every patient we touch."

Since 1994, the IMF has awarded over 100 research grants to junior and senior researchers. This year also, the IMF awarded the Brian DNovis and Aki Horinouchi Research Grants to recipients from around the world. For the first time every one of the recipients was from China. The award ceremony included the stories of Myeloma survivors, driving home the point that Myeloma research and treatment is about the patient. These personal stories highlighted the need for a breakthrough, translational research!

Can you imagine what the world of comedy would look like if Peter Boyle lived to his 80s?
Can you imagine what the world of advocacy would look like if Brian D. Novis lived to his 60s?
Can you imagine what the family of Elijah Alexander would look like if he lived to his 40s?
Can you imagine what "Sandra," born in 1987, would be able to do if she is not going to be diagnosed with Myeloma in 2013 at a young age of 25?
Can you imagine....

Sharing the Hope!
Yelak from North Texas Myeloma Support Group

blogicon_ASH12_yelakb.jpgDay one of the 54th American Society of Hematology Annual Meeting and Exposition in Atlanta, GA was all about controversies. The controversy started with me indicating yesterday was day zero and Jack indicating today is day zero. I will let you decide who is right...

The highlight of today's ASH meetings (day one or zero depending on whose side you are on) was the IMF Satellite Symposium on "Controversies in Multiple Myeloma: Current Debates in Optimal Care". The topics covered ranged from an overview of Myeloma treatment landscape to defining and treating high-risk myeloma to what the treatment decision tree should be for Smoldering Myeloma to how to treat transplant ineligible patents and finally to what the role of Minimal Residual Disease (MRD) is in the treatment and prognosis of Myeloma.

I like these IMF yearly symposiums because they allow Doctors to have a civilized sparring of ideas which at the end hopefully will lead to clinical trials and better treatment consideration to patients.

Some of the takeaways from my perspective were:

  • You need to decide what the goal of treatment should be. While no breakthrough announcement was made at this session, I was impressed by the progress that was made at looking at treatment goal holistically from both the Myeloma and the patient perspective.

  • While the Myeloma diagnosis, treatment and care has exponentially increased in the last decade, it lags significantly behind other blood cancers. It really was refreshing and gratifying to see Drs. challenging each other and their colleagues to elevate the quality of care and pace of research for Myeloma.

  •  It was clear that the research for treatment of Myeloma is further going to the molecular level and laboratory research is as critical as what I call bedside research.

  • For the three case studies presented (a 70 year old male with CRAB based symptoms and increasing cytogenetic and FISH (standard, intermediate and high) risk abnormalities, the majority of the instant feedback survey respondents indicated they will choose a 3 drug combination of CyBorD (Cytoxan, Velcade and Dex) combination.
The final session of the Symposium was a debate between Drs. Jesús San-Miguel and Philippe Moreau about whether Minimal Residual Disease (MRD) is a treatment goal or a prognostic marker. Dr. San-Miguel said Minimally Residual Disease will contribute both to a better definition of response and enable better monitoring of the efficacy of intensification and maintenance therapies... to avoid both under and over treatment. Dr. Moreau had a different opinion and indicated MRD evaluation is important but has no impact on current treatment and the goal of which should be risk-adopted treatment strategy.

Tomorrow starts at 6:30 a.m. with the IMWG breakfast and ends at 9 p.m. with the IMF Senior and Junior Grant Awards

Sharing the Hope!
Yelak from North Texas Myeloma Support Group


Sponsored by the International Myeloma Foundation (IMF) and representing the North Texas Myeloma Support Group (NTMSG) it has been 6 years since I first attended ASH in 2006.

Since then

  • The IMF has celebrated its 21st birthday
  • The NTMSG has celebrated its 15th anniversary
  • There are now many drugs and combination of drugs available for the treatment of Myeloma
  • Spearheaded by the IMF, many states have approved the Oral Drug parity bill
  • Human DNA has been documented
  • There are now many who are living with Myeloma for 20+ years
  • Space Shuttle program has been retired
  • Watson (a super computer) has won Jeopardy
  • I am able to send this blog entry from an inflight WIFI

Some of the things I am looking to report from the 54th American Society of Annual Meeting and Exposition in Atlanta, GA include: 

  • The IMF Satellite Symposium on "Controversies in MM: Current Debate in Optimal Care"
  • The IMWG Education Session on Keeping Pace with Advances in Myeloma 
  • The IMF senior and junior Grant Awards
  • Having 1:1 session with the giants of Myeloma research and treatment
  • Getting answers to questions I brought from my NTMSG members and
  • As well as the many Oral and Poster sessions.

Remembering all those we lost to Myeloma, I and the 10 other support group leaders - who are Doctors, Researchers, Advocates, Successful Business People, Bloggers, Teachers - expect to bring and share our experiences and learning from this year's ASH.

Sharing the Hope!
Yelak from North Texas Myeloma Support Group

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