Monday, October 3, 2016

The News from the CLL Tribune, Caregiver Musical Video by Derek Caine, and CLL related Meetings

Last week we published the latest issue of The CLL Tribune. We’re so grateful to the patients, and physicians and others 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.

This is really a great collection of articles written by fellow patients and doctors. Please take a look here.

We’d like to call your attention to a video that Derek Caine has composed to honor and call attention to the importance of our CLL caregivers. You can check that out here.

This week we would again like to highlight the content from our quarterly newsletter and also request that you take 2 minutes to answer our latest Reader Poll to give us feedback about how we’re doing and what topics you would like to see covered in the future. You can access it here.

Did you participate in the Q1 2016 Reader Poll in The CLL Tribune? That poll focused on the factors that influence you when making decisions about your treatment for CLL. We felt that data was so important that we submitted an abstract for consideration to the American Society of Hematology. On Thursday, we heard that our abstract was accepted. While that is really exciting for us, what’s even more exciting is that the largest global hematology society felt it was important to hear the patient voice. This data is embargoed until after the meeting in December, but we will be sharing it after that. THANK YOU FOR PARTICIPATING! Your voice is important.

Please enjoy the articles and interviews from the Q3 2016 issue of The CLL Tribune:
·      Reading/viewing an interview with Dr. John Pagel about the CLL Education session at ASCO 2016 in Conference Coverage
·      Read answers to reader questions by Dr. Rick Furman in Ask the Doctor
·      Learn about bone marrow biopsies by Dr. Bill Wierda and read a patient-friendly explanation of the report in The Basics Section
·      In Beyond the Basics, learn more about the FISH test, what the results mean and how physicians use it to make treatment recommendations
·      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 feedback about the CLL Society and topics you think should be added to the website in our Ask & Tell section
·      In Living Well with CLL, you can read about:

Upcoming Patient Support Meetings

Tonight, October 3rd in Indianapolis, IN: CLL and Indolent Blood Cancers Support Group at 6:00 PM. More information can be found here.
Tomorrow night, October 4th in Tucker, GA: LLS Family Support Group at 7:00 PM. More information can be found here.
Wednesday night, October 5th in San Diego, CA: UCSD CLL Support Group at 4:00 PM. More information can be found here.
Tuesday, October 18th at 6:30 PM at the Levine Cancer Center in Charlotte, NC – a new CLL Patient & Caregiver Support and Education Group will be starting. Patients and family caregivers are welcome. Find out more about dates and registration here.
Live in Tampa, FL? Another NEW CLL Patient & Caregiver Support and Education Group will be starting in Tampa this fall: Tentative Meeting Date November 1st at Moffitt Cancer Center. Stay tuned for details!
If you’re aware of other CLL Patient Support Group meetings, let us know and we’ll post them. Thanks!

Patient Education Meetings

From time to time, we will make you aware of in-person Patient Education meetings coming up for those of us affected by CLL and lymphoma, specifically:
·      Saturday, October 8th at 9 AM at the Teaneck Marriott at Glenpointe: The Leukemia and Lymphoma Society will be hosting their New York/New Jersey Metropolitan Area Blood Cancer Conference. Dr. Anthony Mato from the Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA will be speaking during the CLL breakout session. You can find out more information and register here. Breakfast and lunch will be served and there is no charge to attend. Parking is also complimentary.

·      Wednesday, November 16th at 6 PM at the Hilton Minneapolis/St. Paul Airport – Mall of America in Bloomington, MN: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Dr. Timothy Call, from the Mayo Clinic is the featured speaker. You can find out more information and register here. Dinner will be served and there is no charge to attend.

Heads Up! The CLL Society has become aware of a series of unbranded (no specific drug discussion) patient education meetings coming up in October and November. 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 and education groups have had on their CLL journey. We will provide practical tips and support for setting up a local CLL group 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 next 7 confirmed meetings are:
·      Tuesday, October 4th in Phoenix, AZ. More details in the flyer. Access it here.
·      Thursday, October 6th in Park Ridge, NJ. More details in the flyer. I’ll be there. Access it here.
·      Tuesday, October 11th in Bloomington, MN. More details in the flyer. Access it here.
·      Tuesday, October 25th in Golden, CO. More details in the flyer. Access it here.
·      Saturday, October 29th in San Francisco, CA. More details in the flyer. I’ll be there too. Access it here.
·      Thursday, November 10th in Metairie, LA. More details in the flyer. Access it here.
·      Wednesday, November 16th in Austin, TX. More details in the flyer. Access it here.

In the meantime….
Stay strong.

We are all in this together.

Brian Koffman, MD

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