All Good Things Must Come to an End

| Anne Pacowta

All good things must come to an end, as they did this Monday evening for the fifteen Support Group Leaders (SGLs) who attended American Society of Hematology (ASH) conference this year.

For many, it was not the first time at ASH; however, there were two, as we call them, newbies. But as the weekend progressed, there was no distinction amongst us SGLs.

Friday’s Satellite Symposium was attended by more than 1200 people to listen to a debate on the new drugs recently approved by the FDA, Darzalex (daratumumab) Ninlaro (ixazomib), and Empliciti (elotuzumab) .

Questions that arose included the following:

  • Will new treatment improve survival?
  • To treat or not to treat smoldering multiple myeloma?
  • Two-drug as opposed to three-drug therapy?
  • Immunomodulatory drugs (IMiDs) as opposed to proteasome inhibiters?
  • When to use monoclonal antibodies (MAbs)?

Few of these questions were debated—so you can see, we were off and running.

Our days were long: some starting as early as 5:45 a.m. and going until 9:00 p.m. Even breakfasts and lunches were an opportunity to sit, share, and clarify what we had just learned. Fortunately, Teresa Miceli, a nurse from the IMF’s Nurse Leadership Board, was part of our group and helped us to understand many of the complicated medical facts.

On Saturday evening at the Grant Awards Reception, we listened to the stories of four MM patients who have had success with treatment; and yet, also related how myeloma has changed their lives.

Following their stories, four senior grant award recipients, five junior grant award recipients, and two Japan grant award recipients were honored. What a wonderful and moving event that was!

As I mingled through the crowd, I spoke to a doctor who said that he received a junior grant years ago, and what this grant meant to him: the ability to subsidize his living expenses (food and rent) and to continue his research. Now, he is with the Binding Site that works with light chains. The IMF surely has reached far and continues to do wonderful things.

One of the surprises of Sunday’s presentations was the “Role of Social Media in Medicine.”  I was surprised to see how social media can be used to spread medical information.

Not to downplay other sessions, but also covered on Sunday were the topics:  Advances in Myeloma, Maintenance and Consolidation, Novel Combinations, Transplantation, and Clinical Trials. As you can see, we had a very full schedule.

Minimal residual disease (MRD) was a constant topic during the weekend, and the consensus of opinions was that this testing is not ready for “prime time,” or a definitive method of staging MM patients.

On Monday evening, we gathered together to watch the International Myeloma Working Group’s live conference.  This was a perfect venue to say our goodbyes and wish each other well, as most were heading home the next morning. We certainly reconnected with friends and welcomed new friends into our lives.

During one of the last sessions on newly approved drugs and new drugs in the pipeline,  a lovely man, stepped up to the microphone, thanked the physicians for their work, however, stated, “ You are not done: get back to work”  . . . which, I suspect the clinicians are doing already.

Thank you to all the doctors and researchers who spent long days presenting and discussing their findings and continue to do so.

Last, but not least, thanks to the IMF for the foresight to know that an educated and empowered patient makes a better partner with their physician to make treatment decisions.

Please register for:

Best of ASH 2015
What Myeloma Patients & Caregivers Need to Know
January 7th, 2016 7:00 PM Eastern.

Go to to register

Now for some well-earned rest . . . .

Follow Anne on Twitter: @IMFsupportANNE
The North Florida Area Multiple Myeloma Support Group
Jacksonville, FL

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