Friends and CLL Society supporters:
This is a difficult piece for me to write, but after consulting with my wife, my family, my closest friends and key supporters of the CLL Society, I have decided to share further details of my personal battle with CLL.
You may have noticed a substantial increase in our efforts with this charity in the past several months. More fundraising, more patient support groups, more services, more conference coverage videos, and more patient research activities. While this is partly due to the natural progression of a growing non-profit like ours, there is another explanation for my urgency.
After an amazing run of 69 months on Ibrutinib, my CLL is officially relapsing.
Before I address my treatment plan, I would like to express my never-ending gratitude to all the researchers, hematologists, nurses, and especially the brave clinical trial patients who participated in bringing Ibrutinib to market. What an amazing drug! I can say without hesitation that without Ibrutinib, I would not be here, there would be no CLL Society, and countless other CLL patients would have already succumb to this terrible disease. And while I personally grateful to the many doctors who have helped me on my 12-year journey, I particularly would like to thank Dr. John Byrd and the entire Ohio State team. The team at The James Cancer Hospital is truly doing God’s work. To be treated by them is to be treated by angels.
I have studied my case thoroughly and consulted with many friends and experts – after all, “Smart patients get smart care.” After serious introspection, I have decided that I have the best chance to save my own life while at the same time serving science and the broader CLL community by once again participating in a potentially breakthrough clinical trial. Just like with my choice to start PCI-32765, now known as ibrutinib, in a Phase IB/II trial, I believe it is my obligation when possible to do my part for research, so that further good can come from my cancer for me and others. For these reasons, I will soon be undergoing innovative CAR-T therapy as part of a phase I/II clinical trial.
I am confident that this CAR-T trial offers me the very best odds at a long and deep remission.
It comes with real risks that I know and respect, but I am hopeful.
I am hopeful that I will respond well and achieve a complete MRD- remission. Odds are in my favor.
I am hopeful that this treatment will prove to be safe and that any side effects will be mild, manageable and short term. Odds are in my favor.
I am hopeful that I will have a long glide with my disease controlled for years as I have experienced with ibrutinib. Here only time will tell.
And I am also hopeful that my participation in this clinical trial will push the scientific understanding of CLL forward, so that this therapy will be available sooner to the broader CLL community and that we can ultimately find a cure.
During the next several weeks and months, as I prepare for and receive treatment, the CLL Society will continue ‘business as usual’ – to the extent ‘usual’ is possible while battling cancer. I will try to blog on CLLSociety.org often about my experience and share the blow by blow accounts, the details and my insights about my next amazing adventure on the new CAR-T section of our website.
We will do our best to continue serving all aspects of the CLL community. And we will continue to work to establish a firm and sustainable foundation for this non-profit.
Your thoughts, prayers and support are greatly appreciated.
We are all in this together.