November 20, 2018
Friends,
This week we’re posting about an important issue that impacts all cancer patients – The Cancer Drug Parity Act – HR 1409. David Nell who attends our CLL Support Group in Charlotte, NC took it upon himself to get educated about this important Act and to share it will us, as well as share what is being done by others to get this Bill passed. You can read his article and what you can do to help move this forward HERE.
Did you know that there is published evidence that CLL patients that 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 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 .
Catalina Swim for Leukemia – If you haven’t already, please check out the progress of Stan Kurtz as he trains to swim from Catalina to Pales Verdes to raise money for leukemia at his FB page: https://www.facebook.com/search/top/?q=stan%20kurtz . You can read more about his amazing story here .
Last week we published the latest issue of The CLL Tribune . We’re so grateful to the patients, pharmacists and physicians who share their experience and expertise to enrich our CLL Society community. If you would like to share your story, or have ideas for future articles, please reach out to us .
Please enjoy the articles and interviews from the Q2 2018 issue of The CLL Tribune:
- Read or watch the interview with Dr. Brian Koffman and Dr. John Byrd as they discuss the data presented at ASH and information that still needs to be discovered about CLL.in Conference Coverage.
- Read answers to reader questions by Dr. Rick Furman in Ask the Doctor
- Read answers to reader questions by Tom Henry in Ask the Pharmacist
- In The Basics Section, Valerie Vickers shares her poetry and her thoughts and suggestions about coping during the watch and wait period with CLL.
- In Beyond the Basics, Wayne “WWW” Wells, well-known CLL patient has developed a comprehensive article about the latest knowledge on a prognostic marker called NOTCH1..
- Learn new facts about CLL in the Did You Know section
- In Ask & Tell, read the results of the Q1 2018 Reader Poll about printed educational materials and download the posters developed from our patient survey that we presented at ASCO and EHA in June.
- In Living Well with CLL section, you can read about:
CLL Support Groups Coming Up!
Thursday, July 5th at 7:00 PM in New City, NY – The CLL Information & Support Group of Rockland County NY, sponsored by the Leukemia & Lymphoma Society will be meeting. More information here.
Monday, July 9th at 6:00 PM in Indianapolis, IN – The CLL and Indolent Blood Cancers Support Group will be meeting. More information here.
Tuesday, July 10th at 7:00 PM in Orange, CA – The Orange County CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
Wednesday, July 11th at 7:00 PM in Salt Lake City, UT – The Salt Lake City CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
Thursday, July 12th at 7:00 PM in Syosset, NY – The Long Island CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
Saturday, July 14th at 10:00 AM in Webster, TX – The Houston-area CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
Saturday, July 14th at 12 Noon in Los Angeles, CA – The Westside CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
Saturday, July 14th at 12:30 PM in North Worcester, MA – The Central Massachusetts CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
Saturday, July 14th at 1:00 PM in Gig Harbor, WA – The Seattle/Olympic Peninsula CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
Saturday, July 14th at 2:00 PM in Orlando, FL – The Orlando CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
Sunday, July 15th at 3:00 PM in New York City, NY – The New York City CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
Sunday, July 15th at 4:00 PM in San Francisco, CA – The San Francisco CLL Support Group, sponsored by the CLL Society will be meeting. More information here .
CLL Patient Education Meetings
Leukemia & Lymphoma Society Sponsored Meetings
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 .
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.
The Ohio State University Sponsored Meeting
Monday, July 23rd 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 .
In the meantime….
Stay strong.
We are all in this together.
Brian Koffman, MD
July 3, 2018
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