Dr, Jeff Jones on the importance of genetic Testing Before Treating our CLL (chronic lymphocytic leukemia) or any cancer

In this short but pithy news interview, Dr. Jeff Jones from Ohio State explains why it so very important to know the details of your cancer before starting on any treatment.

It could be a matter of life or death,

Please enjoy this brief and helpful interview:

• http://www.10tv.com/article/healthsource-10-blood-cancers-and-genetic-testing

Reflecting on the three Year Anniversary of the Approval of Ibrutinib in the USA

I realized this week that Feb. 12 was the 3rd anniversary of the approval of ibrutinib in the USA that changed the whole treatment landscape in CLL, so I thought I would reflect on all the progress that has taken place in the treatment of our disease during this time frame and all the issues that still remain. You can read my thoughts and share your own here: http://cllsociety.org/2017/02/reflections-three-year-anniversary/

What a wild and wonderful three years it has been- but we are not over the finish line quite yet.

Stay strong.

We are all in this together.

Brian

http://cllsociety.org

How Ibrutinib and other perhaps other BTK inhibitor work over time in CLL (chronic lymphocytic leukemia)

At ASH 2016 in San Diego, CA, I had the honor of once again interviewing Dr. Wiestner from the NIH (National Institute of Health) about the prototype BTK inhibitor, ibrutinib and how and why it works so well in CLL.

We have known for a while that for its survival and well-being, our cancer is dependent on BCR (B cell receptor) signaling. Blocking BTK (Bruton’s Tyrosine Kinase), blocks that BCR signaling and that blocking usually leads to our cancer’s retreat.

This is a well-understood critical tenet of why ibrutinib works as well as it does, but it is hardly the whole story as we are learning over time.

At the NIH, Dr. Wiestner and his team not only did some of the earliest clinical research on ibrutinib, but also has been doing the bench science on exactly how it works and its impact changes over time.

Please enjoy the interview here: http://cllsociety.org/2017/02/ash-2016-wiestner-ibrutinib-cll/

Stay strong.

We are all in this together.

Brian

http://cllsociety.org

Healthevoices Health Advocacy Conference 2017

I have attended a meeting sponsored by Janssen on online health advocacy the last two years and hope to be returning again this April 21-23. It is a strong meeting, full of good info, much fun and great folks. I highly recommend it and alway learn from it. It is more for individuals than organizations.

Patients and caregivers with HIV, colitis, psoriasis, schizophrenia, different cancers and many more conditions attend. 

I was asked to reach out to friends who have an online advocacy presence in the cancer world to see if they are interested in attending. The deadline has been extended to Feb 13. To apply and learn more, please go to: https://www.healthevoices.com

When CLL Goes Bad

Our Breathtaking View into Yosemite Valley this Winter Friends, I just returned home from a long weekend in Yosemite. It was touch and go whether the roads would be clear enough to get there, but we made it and it was breathtaking! There was 9 feet of snow where we cross country skied and most of the valley had a thick dusting of white. It was so beautiful. A week after the 2016 ASH meeting, the CLL Society held our 2nd annual CLL Patient Educational Forum at City of Hope in Duarte, CA. After the forum, I had a chance to chat with Dr. Steve Rosen about the new data that provides hope for patients whose CLL has transformed to Richter Transformation. You can read about it and watch out interview here. ALL DONE! Thank you to the 233 who participated in our Q4 2016 Reader Poll about your experiences with Testing before Treatment. We're really anxious to dig into the data. Thank you again for your time! CLL Patient Support Group Meetings Coming Up AND New Ones Forming Wednesday, February 1st from 4:00 - 5:00 PM in La Jolla, CA: The UCSD CLL Education and Support Group will be meeting. More information here. Thursday, February 2nd at 7:00 PM in New City, NY: The CLL Information & Support Group of Rockland County NY, sponsored by LLS will be meeting. More information here. Monday, February 6th at 6:00 PM in Indianapolis, IN: The CLL and Indolent Blood Cancers Support Group will be meeting. More information here. Tuesday, February 7th at 7:00 PM in Tucker, GA: The Tucker - Family Support Group, sponsored by LLS will be meeting. More information here.  ALSO -  We are actively forming CLL-specific support group in a number of cities around the country. To see if your city is one of them, go to our home page  and click on the interest survey for your city. Not listed, but interested in starting one? Email us at support@cllsociety.org. Thanks! Upcoming Patient Education Meetings Saturday, February 4th from 8 AM to 12:30 PM in San Francisco, CA: The Leukemia and Lymphoma Society is hosting their Northern California Blood Cancer Conference 2017 at the Hyatt Regency San Francisco. Dr. John Pagel from the Swedish Cancer Institute and a member of our Medical Advisory Board will be speaking at the CLL Breakout Session.  Find out more information here.  Saturday, February 18th from 7:30 AM to 2:45 PM in Scottsdale, AZ: The Lymphoma Research Foundation will be hosting Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options which will include disease-specific breakout sessions. There is no cost to attend, but registration is required. Find out more information here. Saturday, March 4th from 9 AM to 3 PM in Anaheim, CA: The Leukemia and Lymphoma Society is hosting their Southern California Blood Cancer Conference 2017 at the Anaheim Marriott. Dr. Herbert Eradat from the UCLA Lymphoma Program will be speaking at the CLL Breakout Session. Find out more information here. Saturday, March 18th from 7:30 AM to 3:15 PM in Washington DC: The Lymphoma Research Foundation will be hosting Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options which will include disease-specific breakout sessions. There is no cost to attend, but registration is required. Find out more information here. In the meantime.... Stay strong. We are all in this together. Brian Koffman, MD January 31, 2017 http://cllsociety.org

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