Converting Fear to Realistic and Actionable Hope

| Yelak Biru

In his pre-2014 IMF ASH write-up, Dr. Durie said, “This year, there doesn’t appear to be the sort of news that will reset the needle in the myeloma landscape.”

However, last year, Dr. Keith Stewart’s ASPIRE presentation about Progression Free Survival (PFS) of 26+ months (vs. 17 with Rd) was one of the main highlights of ASH 2014. This news now seems like ancient history. The gains made in myeloma treatment between ASH 2014 and ASH 2015 have been some of the most eventful in the history of the disease that I can remember since I was diagnosed 20 years ago.

Advances in the testing, diagnosis, and treatment are giving myeloma patients options and hope. Some examples include the following:

  • advanced framing of a cure for myeloma through the Black Swan Research Initiative (BSRI)®,
  • updated and improved guidelines for diagnosis and treatment, and
  • three new drugs approved by the FDA for the treatment of MM (two of which are first in class drugs).

In Dr. Durie’s blog “What to expect from this year’s ASH: a preview?”, he writes, “The new information absolutely improves our understanding of myeloma and will lead to better patient outcomes.” Other myeloma practitioners, Dr. Vincent Rajkumar for example, explains that this year’s ASH will definitely be “practice changing” for the myeloma community.

If you are newly diagnosed and you are not afraid (if not terrified), then perhaps you haven’t grasped the gravity of your disease. At the same time, if you are not energized, hopeful, and forward-looking about the treatment choices and outcomes for the future, it may be time to become informed and stay informed. The goal is to convert your fear to realistic and actionable hope!

As a member of IMF’s 2015 #socialmedia team, my objective is to make you think about “How you transition from a sideline observer of your care to an active and engaged myeloma patient?” If you are already an engaged patient, “How do you remain one?” I will attempt to guide you to think through these questions:

  • How do you make the next best treatment option choice?
  • How do you stay informed without being overwhelmed?
  • How do you make the right doctor choice? You may visit a few doctors before finding the one with whom you can foster a productive and happy health-care relationship.

Over the past decade, and especially the last few years, we’ve made tremendous progress on the shoulders of brave patients that have gone before us and those that have dedicated their lives to the treatment of myeloma and improving the quality of life of myeloma families.

All of my 2015 ASH #socialmedia correspondence are dedicated to and will honor the late Mike S. Katz. Mike is a shining example of advocacy, research, quality of life, and using information to beat the statistical odds of a myeloma diagnosis.

Sharing the Hope!

Follow Yelak on Twitter: @NorthTxMSG
North Texas Myeloma Group
Dallas, TX

Leave a Reply