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

ASH 2015: Dr. Jeff Jones on Venetoclax for CLL relapse after ibrutinib and idelalisib.

The happy couple standing right on the equator at the most elegant Mt. Kenya Safari Club

(Just sharing it wasn't all roughing it on our trip to Kenya. We stayed for one night where the movies stars stayed in the 30s)

I’m sort of back in the swing of things and have partially caught up on sleep finally.

This week in the Conference Coverage section, we’ve posted an interview with Dr. Jeff Jones from ASH 2015 where we discussed the use of venetoclax for those who relapse after ibrutinib and idelalisib. You can view that interview here. http://cllsociety.org/2016/08/ash-2015-dr-jeff-jones-venetoclax-used-stopping-b-cell-receptor-cll/

We are pleased to announce that a new CLL Patient & Caregiver Support and Education Group will be starting in partnership with the Levine Cancer Institute – Morehead in Charlotte, North Carolina. The first meeting will take place on Tuesday, October 18th at 6:30 PM. Patients and family caregivers are welcome. Find out more about dates and registration HERE.

From time to time, we will make you aware of in-person meetings coming up for those of us affected by CLL, specifically:

·      Monday, September 19^th at 10 AM at at The Grand Central Hotel in Glasgow, Scotland: The CLL Support Association (CLLSA) is hosting a 2016 Glasgow Members Conference. Dr. Alison McCaig a consultant in the haematology department of the Royal Alexandra Hospital will be the featured speaker. Lunch and refreshments will be served and there is no charge to attend for members. You can find out more information and register here.   http://www.cllsupport.org.uk/civicrm/event/info?reset=1&id=33

·      Wednesday, September 21st at 6 PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Rick Furman from New York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical Advisory Board) is the featured speaker. Dinner will be served and there is no charge to attend. You can find out more information and register here.  http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9419387

The CLL Society has become aware of a series of unbranded patient meetings coming up in September and October (with a few more to come in November and December). CLL patients will share their personal stories, and local CLL experts will be providing a talk on the basics of CLL. A complimentary meal will be provided and parking is free. You are welcome to bring a guest.

One member of the CLL Society will be at each meeting to show a brief video and give a talk about the impact support groups have had on their CLL journey. We will also have an exhibit table and will stay afterwards to meet with attendees who may be interested in participating in a support group in those areas. We look forward to meeting you there. The first 3 confirmed meetings are:

·      Tuesday, September 6th in Rosemont, IL at the Chicago Marriott Suites O’Hare. More details can be found in the flyer. Access it here. http://cllsociety.org/docs/CLL_Flyer_RosemontIL.pdf

·      Saturday, September 17th in Long Island, NY at Homewood Suites by Hilton Carle Place, in Carle Place, NY. More details can be found in the flyer. Access it here. http://cllsociety.org/docs/BCO_LPOP_CLL_EventFlyer_LongIslandNY_081816.pdf

·      Wednesday, September 21st in Madison, WI at Gilda’s Club Madison. More details can be found in the flyer. Access it here. http://cllsociety.org/docs/CLL_Flyer_MadisonWI.pdf

As you can see, we've been busy.

The Patients' Perspective on the Changes in CLL (chronic lymphocytic leukemia) Treatment from EHA

If you recall, a month ago I was in Copenhagen for the European Hematology Association  (EHA) meeting and I had the privilege to be asked to speak with a very distinguished panel of CLL experts at a symposium that drew over 1,000 hematologists. Recently in our Conference Coverage section, we have posted a video review by Dr. George Follows of that symposium. You can hear about the highlights here. http://cllsociety.org/2016/07/panel-discussion-management-cll-changing/

Presenting the results of the 350 patients who answered our survey on therapy really added to my credibility in front of my fellow doctors. Thanks to those who helped with that.

If you were on vacation during these first weeks of July, we’d like to call your attention to our quarterly newsletter The CLL Tribune and also request that you take 3 minutes to answer our latest short Reader Poll about what you look for in your CLL physicians. You can access it here. https://asktellq22016.questionpro.com/ Thanks to the 140 CLL patients who have already responded. It really helps. The Tribune is the product of many authors, both patients and doctors. Please enjoy the articles and interviews from the Q2 2016 issue of The CLL Tribune:

· Reading/viewing an interview with Dr. Jeff Jones about Venetoclax from the recent EHA meeting in Copenhagen in Conference Coverage

· Read answers to reader questions by Dr. Rick Furman in Ask the Doctor

· Learn about what bone marrow does in The Basics Section

· In Beyond the Basics, find out about the ASCO sponsored TAPUR trial which is looking for new creative uses for already approved targeted therapies

· Learn new facts about CLL in the Did You Know section

· View some data from our most recent Reader Poll and share with us your opinions on CLL experts and whom you might recommend to other patients in our Ask & Tell section

· In Living Well with CLL, you can read about:

o Why You Should See a CLL Specialist

o How my Support Group Saved my Life

o I Don’t Have CLL. Yes, I Do. Now, I Don’t.

o On Being a Novice Patient

o May I Remember Never To Forget

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

7/16/16

http://cllsociety.org