Getting to Know CLL Europe By Andrew Schorr,
founder Patient Power.Info, and CLLer since 1996
It was April, 1996 when a recurring nose bleed while running in Seattle, Washington, USA turned out to be the surprising diagnosis of CLL. At age 45 I was in shock and feared I would soon be dead, leaving a wife and two children behind and no longer able to host educational programs for patients on, then, healthtalk.com. But other patients saved my life by connecting me, through an online support group (the CLL group on acor.org) with US CLL experts. That led to an extended watch and wait period of four years (while my first doctor wanted me to have chemo right away) and the "green light" to have a third child. As my expert "consultant," as you call them, Dr. Michael Keating in Houston, said to my wife, "Andrew is not going to die anytime soon!" So in 2000, as things progressed, I entered the phase II trial for FCR, which remains the standard today. But I received it ten years before approval in the U.S. And it worked! I have had no CLL treatment since I completed six cycles in February 2001. And I lead a full life, now dedicated to hosting programs for all of us on www.patientpower.info and now in Europe on www.patientpower.eu.
So what is this American doing in Europe? Barcelona to be exact. Answer: trying to become a global citizen and less insulated as an American. That goes for my wife too, Esther, and that third child that the CLL specialist gave us permission to have, Eitan, now 16. We are all living the good life, especially at sunny cafes in Barcelona.
Once here in your part of the world I thought, why not see if I can help add in a positive way to the CLL communities, and some other cancers too? What I've been doing is, at my own expense, travelling to medical conferences and interviewing European experts including dear Professors Hillmen and Dearden from the UK. I love these folks and, for me, I love their accents too! You know all us Americans think you folks are smarter anyway, right? Maybe you've got us fooled but Piers Morgan is now big on American TV as was David Frost years ago.
O.K. now back to CLL. I am excited for the changes coming in treatment. It promises new hope for people who have not had the success I had with FCR. I will be covering those discussions and hope you will see the videos online. And if you have suggestions on what I can do that's helpful, just email me at firstname.lastname@example.org.
With luck, we'll get funding so we can do something big and continuing.
Maybe I will see you soon in the UK. I will pack an umbrella but with the hope I do not need it. Otherwise it would be too much like Seattle!
Yours in CLL, Andrew Schorr Andrew Schorr | Founder and Host | email@example.com | 206.973.7390 or +34 622069835
Chonette Taylor, Nick York and Garry Bisshop have all met with Andrew to discuss working together to raise our profile as an organisation and to ensure that we can maximise the opportunity to share Andrew’s work with all of our members to improve their knowledge and understanding of CLL. This is good timing for us because we have embarked on a website development programme which will ensure that the website can provide immediate access to the resources that Andrew has developed. We encourage you to visit Andrew’s website, if you have not already done so. There are many interesting and relevant CLL issues discussed in his interviews with some of the most eminent CLL specialists in the world. The article entitled Understanding Blood results in this edition provides a brief insight into his work.