ASH 2016 doesn’t disappoint with its abundance of myeloma-specific studies

| Michael Tuohy

Each year I’m honored to attend ASH with the IMF. I’ve been a myeloma survivor for 16 years and am encouraged to continue to share all the good news from ASH. When I first attended ASH with the IMF about 10 years ago, there were not nearly as many trials as we have now. It used to be “Myeloma Monday,” with scattered trials throughout the day. The last few years, there are myeloma oral abstracts every day, simultaneously, and even the need for overflow rooms! Thousands of researchers are interested in, and doing trials for us, to have better combinations, fewer toxicities, and someday the cure. I thank each and every one of them!

I was encouraged after last year’s unprecedented approval of four new drugs (Kyprolis®, Darzalex®, Ninlaro®, and Farydak®), and that at ASH 2016, we still had trials with new drugs and lots more using combos of the novel therapies so it can be determined how to best use these drugs in “the real world.”

I think two of the new oral drugs were quite impressive:
• Venetoclax (alone and in combo with Velcade/dex) great news for refractory patients plus in patients with t(11;14);
• Selinexor – lots of trials – but as I stated in my video blog, I was especially enthusiastic to hear about the STORM trial which was successful even in quad- and penta-refractory patients.
Dr. Durie spoke about these in his Pre-ASH teleconference:

I was also very interested in Nelfinavir, which is an AIDS drug. It’s used in combo with Velcade and dex and had a great response. When this oral abstract was presented, the investigator mentioned that they had to pay for this drug so that’s why it was only a six-month trial. I certainly hope that based on the positive results that more trials on Nelfinavir will happen.

In addition to the oral abstracts and poster presentations at ASH, I was asked to be interviewed by NPR. StoryCorps is a nonprofit organization that has given more than 100,000 Americans the chance to record interviews about their lives, sharing experiences from generation to the next and leaving a legacy for the future. They record the stories of those living with serious illness. More specifically, Blood Counts is an educational campaign designed to raise awareness of progress in treating multiple myeloma. Amgen has partnered with StoryCorps to bring the stories of myeloma patients, caregivers, and others in the myeloma community about their experiences with the disease. So glad Robin and I could be a part of this exciting project.

Michael and Robin Tuohy pose in front of the StoryCorps bus at ASH 2016.

Michael and Robin Tuohy pose in front of the StoryCorps bus at ASH 2016.

Thanks again to the IMF, researchers, and patients who participate in clinical trials. Together, we are making a difference for the better in our myeloma world.

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Michael Tuohy

Michael Tuohy is a sixteen-year multiple myeloma survivor, having been diagnosed in 2000 at the age of 36. He had an autologous stem cell transplant in 2002, and is currently on Revlimid® (11 years.) He and his wife Robin started the first myeloma support group in Connecticut in the spring of 2001 with the help of the IMF, which is known as the Connecticut Multiple Myeloma Fighters Information Group.

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