Two Year Anniversary of the CLLSociety.org website Celebrating with our 7th Newsletter

This issue of The CLL Tribune (http://www.cllsociety.org/newsletter/) is our 7th quarterly newsletter and I am proud to say it marks two years since the CLL Society has had a web presence. We have only grown because of your support. Thank you.

This issue includes our Basic section where I do the math on how much CLL we have in our blood. In Beyond the Basics, Dr. Pagel discusses the rapidly changing role of transplant in CLL. From ASH 2016, in Conference Coverage, Dr. Seymour discusses promising new BTK inhibitors. I hope you enjoy my Did You Know fun CLL facts and please don't skip our Ask & Tell section where you can read the results of last issue's Reader Poll or Ask the Doctor section featuring Dr. Furman. 

The Living Well with CLL section has five amazing and inspiring articles all written by patients: CLL Life Lessons by Jennifer Woolf; A Sentence of Life! By Derek Caine; Me and my Leukemia, BFFs Forever by Nancy O'Brien Simpson; n of 1 Chapter 28 by Glenn Sabin with my brief intro; and a book review of n of 1 Book by Rick Conner.

We can learn so much from each other. We are so grateful to all our contributors and for your readership and support that in two short years has made us the go-to site for patient-friendly education, support and research. And please, if you have a story to tell or a lesson to share, we need you to write for us. Reach out to us at support@CLLSociety.org. 

The CLL Tribune: Useful articles on chronic lymphocytic leukemia by patients, caregivers. and doctors

I am so proud of and thankful to the patients, caregivers and doctors who wrote for The CLL Tribune: A Quarterly Publication of the CLL Society on chronic lymphocytic leukemia.

See: http://www.cllsociety.org/newsletter/

It is full of good stuff for those at any level of their disease.

As we close out another holiday season, we reflect upon the good times with family and friends, and remember all that has been accomplished in the world of CLL in 2016.

The CLL Society continues to provide education and resources to fill the unmet needs of CLL patients and caregivers. The Society also started a number of in-person patient support groups around the country where patients help patients understand their CLL and cope with a cancer diagnosis. And, most importantly in 2016, the dedicated researchers brought us new therapies in clinical trials and FDA-approved novel biologics to treat CLL.

Now we look forward to the promise of more and better treatments to come in 2017. As CLL patients, we must stay vigilant, educated, and strong. And, with more people being diagnosed with CLL every day, we must continue to help them along their CLL journey.

If you can support our mission with an end of the year tax-deductible donation, be assured it will be used to help more patients and caregivers and allow us to offer more services. We wish you and your families a healthy and Happy New Year. Stay strong. We are all in this together.

Here are some of the articles:

Watch and Wait: Professor Chris Fegan from Wales "GETS" CLL

Dr. Brian Koffman and Dr. Chris Fegan discuss discussed the stress of being diagnosed with leukemia in general and in particular, dealing with "Watch and Wait".

Ibrutinib For Watch and Wait? My Story

Meldon Kahan, a CLL patient, shares his decision to join a clinical trial testing ibrutinib in treatment-naïve patients who are still in the watch and wait phase.

What to Do While You Watch and Wait: A Patient's Perspective

Mark Hoffman, a CLL Patient, shares how he manages watch and wait and what works for him: education, diet and exercise, green tea and turmeric.

What You Should Know as a CLL Caregiver

Howard Massey, a caregiver for a CLL patient for the past 10 years shares some key elements to being a good caregiver.

You Never Know: Twenty Years since Stage IV and Counting

Dennis Fried, CLL patient, uses his great sense of humor to describe how he dealt with his initial diagnosis of Stage 4 CLL and the challenges he has faced since that time.

Autoimmune Problems in CLL

Dr. Brian Koffman reviews the fundamentals of autoimmune disease that can cause low blood counts or cytopenias in CLL patients, potential causes and how it is treated .

Richter Syndrome

Dr. Adrian Wiestner from the National Institutes of Health in Bethesda, MD explains what Richter Syndrome is and the available data about this rare condition when CLL/SLL transforms into an aggressive lymphoma.

ASK THE DOCTOR

Dr. Richard Furman of Weill-Cornell Medical College answers readers' questions submitted to the CLL Society

CONFERENCE COVERAGE

ASH 2016: An Interview with Dr. John Pagel on Maintenance Therapy in CLL

Read or watch the interview with Dr. Pagel from ASH 2016 where he shares key data presented on the topic of maintenance therapy in CLL.

DID YOU KNOW?

Learn some key facts and data points about CLL

ASK & TELL

View the CLL Society ASH Poster based on an earlier Reader Poll, Participate in a new 5-question reader poll about testing before treatment, or submit a question you'd like addressed in future newsletters.

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. http://cllsociety.org/contact-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. http://cllsociety.org/2016/10/derek-caine-cll-caregivers/

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. https://q32016ask.questionpro.com/

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:

o   Reflections on Risking a Safari in Kenya and Tips for Safe Travel to Exotic Places when Fighting CLL

o   Standing Up For Your Health

o   My Treatment-Naïve Ibrutinib Journey – The First 30 days

o   Could a CLL Clinical Trial Save My Life? What Were the Risks?

o   Connect in Person: Join A Local CLL Support Group!

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 4^th in Tucker, GA: LLS Family Support Group at 7:00 PM. More information can be found here.

Wednesday night, October 5^th in San Diego, CA: UCSD CLL Support Group at 4:00 PM. More information can be found here.

Tuesday, October 18^th 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 1^st 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 8^th 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 4^th in Phoenix, AZ. More details in the flyer. Access it here.

·      Thursday, October 6^th in Park Ridge, NJ. More details in the flyer. I’ll be there. Access it here.

·      Tuesday, October 11^th in Bloomington, MN. More details in the flyer. Access it here.

·      Tuesday, October 25^th in Golden, CO. More details in the flyer. Access it here.

·      Saturday, October 29^th in San Francisco, CA. More details in the flyer. I’ll be there too. Access it here.

·      Thursday, November 10^th in Metairie, LA. More details in the flyer. Access it here.

·      Wednesday, November 16^th 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

10/3/16

http://cllsociety.org

CLL Tribune: Our 4th Chronic Lymphocytic Leukemia Newsletter with Articles by CLL Patients and Doctors

Last week we published the 4th edition 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 week we would again like to highlight the content from our quarterly newsletter and also request that you take 5 minutes to answer our latest Reader Poll about what you look for in your CLL physicians. You can access it here. https://asktellq22016.questionpro.com/

Please enjoy the articles and interviews from the Q2 2016 issue of The CLL Tribune: http://www.cllsociety.org/newsletter/ 

• 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