July 17, 2018

Hello, Friends and Supporters of the CLL Society.

As always, we try to keep you on the cutting-edge of important news, upcoming learning opportunities and Support Group meetings near you… so, take good care of yourself and read on. Have your calendars at the ready, and check out the latest updates and offerings below.

Featured Video

In this week’s featured video, Dr. Koffman highlights the latest CLL research news from EHA (European Hematology Association’s 23 Congress held June 14 – 17, 2018 in Stockholm, Sweden). Find the video here.

Dr. Koffman’s Blog

This week Dr. Koffman has posted a CAR-T blog about his swim routine. Read it here.

Regulatory News

Although not directly CLL related, many cancer patients needed opioids for pain management at some point in their journey. There are already significant shortages of pain medications and I, for one, sure need them during my recent CAR-T treatment. Here is the news: The U.S. Justice Department has finalized a new rule that will allow the Drug Enforcement Administration to reduce the amount of opioid pain medication a drug maker can produce if it finds the opioid is being diverted or misused. The controversial change in the opioid production quota system was adopted despite warnings from patients, doctors and drug makers that it targets the wrong problem and could worsen shortages of some pain medications. By their own calculations, less than one percent of legally prescribed opioids are diverted to those who are not taking them for legitimate pain relief.

CLL Society Expert Access Program

Did you know that there is published data indicating that CLL patients who see a CLL Expert have a survival advantage? That was the inspiration for the CLL Society Expert Access™ program, a no-cost, second opinion with a CLL Expert that can be accessed from the comfort of your own home. Anyone diagnosed with CLL in the United States who has not had access to an expert second opinion is eligible to apply. Find out more and apply for the program here.

CLL Society Fundraiser

Catalina Swim for Leukemia – Less than 3 weeks until “the big swim” that Stan Kurtz will make from Catalina to Palos Verde, generously donating all proceeds from his GoFundMe campaign to the CLL Society. Take strength from this look at how even a highly motivated person like Stan has to occasionally stand up to the voice in his head when it asks him to abandon his goals: https://www.facebook.com/stankurtz2/videos/10156697117698923/

Please consider making a donation to support Stan’s generous campaign:
https://www.gofundme.com/swimcatalinaforleukemia

Upcoming Special events:

Leukemia & Lymphoma Society Sponsored Meeting

Saturday, July 21st from 9:00 AM – 3:00 PM in Atlanta, GA

LLS invites you to attend Georgia Blood Cancer Conference being held at The Westin Buckhead Atlanta. from the Cancer Treatment Centers of America will be presenting during the CLL breakout session. This event is free but registration is required. Register here.

The Ohio State University Sponsored Meeting

Monday, July 23^rd from 6:00 – 7:30 PM ET in Columbus OH or Streaming

The James Cancer Hospital and Solove Research Institute at Ohio State University invites you to attend Ask the Expert: Current Concepts for CLL Patients in Observation Status AND in Treatment being held on the Conference Level in Room L045. Corinne Hoffman, CNP and Mollie Moran, CNP will discuss tips for newly diagnosed asymptomatic CLL patients who are in observation and what signs and symptoms to look for when treatment might be recommended, as well as symptom management tips for patients receiving treatment. More information here. Register here.

Lymphoma Research Foundation Sponsored Meetings      

Thursday, August 9th from 6:00 PM to 8:30 PM in Hasbrouck Heights, NJ

 The Lymphoma Research Foundation invites you to attend a FREE program: Ask the Doctor About Lymphoma: Updates on Lymphoma and Treatment Options at the Hilton Hasbrouck Heights featuring Lori Ann Leslie, MD from the John Theurer Cancer Center at Hackensack University Hospital. Find out more information and register here.

Prime Education Sponsored Webinar 

Join Dr. John Byrd and Dr. Brian Koffman for Managing Toxicities of Novel Therapies and Coordinating Care for CLL/SLL and FL Patients  

Wednesday, August 15, 2018 at 2:00 PM Eastern / 11:00 AM Pacific

Patients (and Caregivers): Would you know the signs of toxicity from Novel Therapies for CLL/SLL and FL if you saw them? Are you clear about toxicity prevention and management strategies? Share your experiences and get the information you need to knowledgeably discuss healthcare decisions with your treatment team. You will have the opportunity to ask our experts questions and hear their recommendations for managing toxicities and addressing other challenges. Register here.

CLL-Specific Support Group Meetings Coming Up!

Tuesday, July 17^th at 7:00 PM in Chicago, IL – The Chicago CLL Support Group, sponsored by the CLL Society will be meeting. More information here.

Thursday, July 19^th at 7:00 PM in Minnetonka, MN – The Twin Cities CLL Support Group, sponsored by the CLL Society will be meeting. More information here.

Saturday, July 21^st at 10:00 AM in Belmont, NC – The Charlotte CLL Support Group, sponsored by the CLL Society will be meeting. More information here.

Saturday, July 21^st at 10:30 AM in Tampa, FL – The Central Florida CLL Support Group, sponsored by the CLL Society will be meeting. More information here.

Saturday, July 21^st at 2:00 PM in Media, PA – The Philadelphia CLL Support Group, sponsored by the CLL Society will be meeting. More information here.

Saturday, July 21^st at 3:00 PM in Vienna, VA – The Washington DC-area CLL Support Group, sponsored by the CLL Society will be meeting. More information here.

Sunday, July 22^nd at 3:00 PM in Dallas, TX – The DFW CLL Support Group, sponsored by the CLL Society will be meeting. More information here.

A special note for The Seattle/Olympic Peninsula CLL Support Group: our meeting on Saturday, August 11th has been canceled. Our regularly scheduled meetings will resume in September.

That’s it for now.

Stay strong.

We are all in this together!

Patty

Patricia Koffman/ Co-Founder and Executive Director
CLL Society Inc.
P.O. Box 1390
Claremont, CA 91711

July 17, 2018