September 23, 2015

This content was current as of the date it was released. In science and medicine, information is constantly changing and may become out-of-date as new data emerge.

Dear Friends,

This week on the CLL Society website, I present my contrarian thoughts on the “bright future” for those of us with CLL.

We have all heard repeatedly how bright the future is for those of us patients these days and we have heard it because it’s absolutely true.

We have MUCH better drugs that work for both those us at high and low risk and these new compounds generally have fewer side effects than traditional chemotherapy. We are starting to understand the biology of our cancer and that is being translated into more individualized and targeted therapies.

But my concern and that of many of the researchers that I spoke with at the large gathering of CLL experts from around the world at iwCLL 2015 in Sydney, Australia was that we might be victims of our success.

Because drugs such as ibrutinib and idelalisib and obinutuzumab are already approved in many countries and offer pretty spectacular results, pharmaceutical companies may be less willing to invest the billions of dollars it takes to bring a new drug to market. New meds likely will need to demonstrate superior results to existing therapies or meet an unmet need or treat a small unserved niche of patients or be lower cost to be approved and adopted by the CLL community.

Because of our amazing recent successes, research funds may start to dry up in CLL, with funders seeing it as a mostly solved problem.

To which I say: HOLD ON!

• We don’t know how long we must stay on these new wonder drugs. We also don’t know how long they will work.
• Are there sequential or combination therapies that make more sense and will allow us to eventually stop taking these expensive therapies?
• We still have no good answers for most cases of Richter’s transformation.
• Most importantly, none of us are cured. Except perhaps for a lucky few allogeneic transplant patients. Let’s cure our CLL.

More research and more money will be needed to answer these and other critical questions.

Please take a look at my ramblings and my short video recorded at the end of the science meeting in Sydney here.

For those of you in the Seattle area, we just became aware of a patient meeting that will be held on Saturday, September 26, 2015 starting at 9:30 AM at the Sheraton Seattle Hotel. Two CLL patients will be sharing their personal stories, and Dr. John Pagel from the Swedish Hospital will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. Complimentary breakfast and parking are provided and you are welcome to bring a guest. You can view the flyer for the event here.

As always we provide all our content with no need to sign in, but I urge you to sign up for our alerts if you haven’t already here. (If you are receiving this information through a CLL Society Alert email, you are already signed up.) By signing up, you will also receive our inaugural newsletter, the CLL Tribune later this month and you don’t want to miss this special collection of research news, basic CLL information, some cool surprises and fun facts. Many of the articles were written by our fellow patients and caregivers.

Please forward this email to those you know with CLL and ask them to sign up for the newsletter too. They will be happy they did.

Stay strong.

We are all in this together.

Brian Koffman

Volunteer Medical Director of the CLL Society