Post-ASH: Gratitude for Research, Resources, and Friendships

Post-ASH: Gratitude for Research, Resources, and Friendships

Today’s blog will be my last #IMFASH21 blog.  As I gather my thoughts after the exhausting but inspirational ASH program, I find myself filled with deep gratitude for research, resources, and the friendships formed along the way.


ASH is filled with the best of the best research in all hematological cancers.  There were 879 myeloma-related abstracts at ASH this year. Thank you, researchers!  I remember when we first started going to ASH in the early 2000s, there was only a one-page listing of myeloma abstracts presented.  

The IMF is developing the first definitive cure for myeloma.  Led by the world’s foremost multiple myeloma experts, the Black Swan Research Initiative (BSRI) is pioneering the way for discovery.


The IMF has numerous educational programs and resources that surround ASH that I’d like to ensure you have all the links to.  If you were not able to participate on the live programs, below are all the replays. Learn and feel the hope for our futures!

  • The IMF’s International Myeloma Working Group Breakfast meeting.  Thank you to each and every one of these members for checking their ego at the door and doing good work for all of us. Myeloma has no borders!
  • The ASH IMWG Conference Series is always a lively discussion on the forefront of the future of myeloma research and care.  Leading myeloma experts discuss the latest drug therapy and focus on highlights from the 879 myeloma-related abstracts.  
  • Last, but not least:  the highly anticipated and valued, IMF Best of ASH.  Dr. Brian G. M. Durie discusses important myeloma takeaways in language that patients and caregivers can understand.  


When my husband, Michael was diagnosed in 2000, the word “gratitude” was not on the tip of my tongue.  However, over the years, we’ve seen many silver linings and layers of goodness.  Since I began working for the IMF in 2005, it’s been my great pleasure to work with and to form many wonderful friendships in the myeloma community: the IMF staff, myeloma doctors, researchers, nurses, pharmaceutical/healthcare folks, and so very many cherished myeloma support group leaders, patients, and care partners. 

This year’s #IMFASH21 Team has been exceptional.  Every year, the team becomes connected like a family. These bonds will forever keep us together in spirit and friendship.  To Jack Aiello, Sheri Baker, Yelak Biru, Becky Bosley, Jessie Daw, John Deflice, Linda Huguelet, Sue Massey, Teresa Miceli, Gail McCray, Michael Tuohy, and Jill Zitzewitz — I am grateful for your care, compassion, and dedication, but mostly your friendship.  Thank you for being on the Team and for taking your time to help others.  

Wishing you Good Health, Peace, Love, and Laughter in the New Year and Always.

Robin Tuohy, on Twitter @IMFsupport 

Post-ASH: Seeing in the Sand

Post-ASH: Seeing in the Sand

“Any fool can turn a blind eye but who knows what the ostrich sees in the sand.” – Samuel Barclay Beckett

Colon cancer screening has been shown to reduce the incidence of colon cancer in the general population by identifying premalignant lesions in the colon and treating them. Can screening for elevated blood proteins impact a specific blood cancer? Multiple myeloma (MM) evolves from monoclonal gammopathy of undetermined significance (MGUS) which is completely asymptomatic.

In an attempt to cure or prevent MM, a massive screening study, the Black Swan Research Initiative (BSRI), was undertaken in Iceland. The BSRI was established by International Myeloma Working Group (IMWG) in 2012 to find a cure for MM. The study was given the acronym iStopMM (Iceland Screens, Treats, or Prevents Multiple Myeloma) and was supported by the International Myeloma Foundation (IMF).

The study initiated by Dr. Sigurdur Kristinsson (Professor of Hematology — University of Iceland) involved over 75,000 patients.  Everyone over the age of 40 was recruited to participate in the study which included 140,000 individuals in Iceland. Dr. Kristinsson tasked a team of 20 investigators to screen for MGUS, smoldering multiple myeloma (SMM). Those who were diagnosed as either having MGUS or SMM would be randomized in a clinical trial to find an appropriate follow-up to determine if screening can prevent multiple myeloma and its ravaging symptoms. The iStopMM study is a randomized controlled study of identified MGUS or SMM individuals that have been grouped either by clinical monitoring or with lab monitoring to evaluate their progress. A third group will be monitored more aggressively, with more invasive tests to establish a pattern of the development of multiple myeloma.

Another study presented at ASH, known as the PROMISE study, is evaluating screening to reduce the incidence of multiple myeloma and to prevent late complications of bone and kidney disease. The PROMISE study, coordinated by Dr. Irene Ghobrial (Director, Clinical Investigator Research Program, Dana-Farber Cancer Institute — Boston, MA), looks at high-risk individuals. High-risk individuals are defined as being first-degree relatives of patients with blood cancers or African Americans who have 2-3 times greater risk of developing MM. The goal of this study is to evaluate the prevalence of MGUS in this high-risk group. In a cohort of 2,960 high-risk individuals screened, the prevalence of MGUS was found to be significantly increased.

These studies are being conducted to determine if, in the future, watchful monitoring, or offering earlier and more aggressive therapy — based on screening for MGUS, SMM, or early MM — could lead to prevention or a possible cure for multiple myeloma. What one “sees in the sand” by screening may change the course of the disease, like it has been shown for other screening initiatives.

John DeFlice, on Twitter @johnde1MYELOMA