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.
Randy with Autumn, Patient Power producer
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!
Andrew
I was diagnosed with CLL 6 years ago and told I had 4 to 5 years. I have 17p13 and deletion of 53. I have had breast cancer since. I have been through FCR. I am stable at the moment, but like Randy, I hope that all the things that I go through allow the medical community to help the next generation of patients, and doctors, understand the mutation better. I have completed the paperwork to donate my body to science. The main thing I want people to understand when they know what I have, that none of us is promised tomorrow. We are born terminal. I want my children, grandchildren and great-grandchildren to remember that I live life to the fullest possible. It sounds like Randy was an amazing man and as such left an amazing legacy. May God bless and comfort his family.
When anyone asks me what I want for a birthday, or Christmas gift I ask them to donate to LLS. It may not be much, but I have no material needs and every little bit helps the LLS.
Thank you for your blog.
Thank you for sharing Randy’s story. He was and will continue to be a remarkable man. His selfless devotion to others is an inspiration and worthy of emulation.
As you’ve shared, although there are many new, exciting, and promising medicines for our chronic leukemia communities, we still find that these diseases claim lives year after year. While we are grateful for these advances, we must never forget that there’s still much to be done. I, personally, and everyone at the National CML Society are dedicated to continuing to do all we can to advocate for our community.
As you know, NCMLS began with this same type loss and I know that Randy’s wishes will live on if each one of us who were touched by him will simply pay it forward in any and every opportunity that arises. I never had the opportunity to meet Randy in person, but found great encouragement in witnessing the great love he had for others.
Our deepest condolences to his family.
Greg & the NCMLS Team
Insightful comments, Andrew, especially to people living with chronic leukemias. I sometimes think people assume we’ve got it licked and have no grounds for questions or complaints.
I join his group this year very helpful and although I did not know well we did talk on FB as friends and was always helpful towards everyone,not sure how you can fill the large gap!
Shocked! As I only talked to him on FB chat as he was doing his trail!
Paul Codling
U.K.