The news around leukemia has been so positive. The recent American Society of Hematology (ASH) meeting in Atlanta was buzzing about it. New powerful, promising medicines for CLL and CML and better approaches for acute leukemias too. Just before ASH I conducted a lengthy interview with Randy Shirley, 55, from Marysville, Washington, north of Seattle. Patient Power senior producer, Autumn Eadon was on site as we discussed topics including his CLL diagnosis three years ago, the fact that standard therapies didn’t work for long, his hospitalizations, his entry into a new phase I clinical trial (ABT-199), and his devotion to helping others through the Leukemia Lighthouse Connection Group on Facebook. I went off to ASH feeling hopeful for Randy and took time at ASH to interview his doctor about Randy’s clinical trial.
Then, just after ASH came terrible news. Randy had died suddenly. Was it the trial medicine, was it that Randy had been in failing health from CLL, was it something else? At this time, I do not know. But I do know Randy Shirley will be missed. I got to know him a little from his Facebook page and occasional emails he would send me with suggestions. Then we got the idea to follow him in his trial to tell one man’s CLL journey story and to encourage others to continue participating in a trial. Our hope, with his family’s permission, is to post some of those interviews to help others. We’ll let you know.
But in the meantime, Randy’s death is an important reminder. People with chronic leukemias DO die, even as they take what promise to be better medicines – targeted, less toxic therapies. And clinical trials are just that – trials. They are conducted to answer scientific questions and not necessarily to give access to a new, better medicine. As I said, we don’t know if the trial drug had anything to do with Randy’s death. I am sure that will be investigated. But, having been in two trials, I know we go into them with high hopes and eyes wide open. That is the best way to look at it.
CLL remains a life threatening condition. So does CML. While we have high hopes for the current and near horizon therapies allowing everyone to live long and full lives, Randy’s death reminds us that is not always the case and we still have much work to do. So in the meantime, not knowing what is in store for each of us, how do we live our lives? That’s where Randy Shirley was a shining example of someone who gave back. Randy did not know how things would turn out for him. No one really does. But he found strength in his devotion to helping other patients: providing them with information, calming their fears, inspiring them.
Randy is gone but the mark he left on all of us by his commitment to helping others lives on. I will always try to follow his example. Maybe, in your own way, you can too.
Wishing you and your family happy holidays and the best of health in the New Year!