Wednesday, December 6, 2017

Dr. Furman on The Diminishing Role of FCR in CLL (chronic lymphocytic leukemia)

As we're getting ready to head to ASH this week, we wanted to post in response to a query that was posted originally on the CLLSLL io group forum. Dr. Richard Furman is their medical advisor and his response really puts the comparison of a therapy that has existed for decades with a therapy that is less than a decade old. You can read my commentary and the text from Dr. Furman's post https://cllsociety.org/2017/12/one-mans-opinion-fcr-vs-ibrutinib/.

We'll be going night and day at ASH and plan to post while we are there. Stay tuned.

Tuesday, November 28, 2017

Giving Tuesday: Please Help the CLL Society fulfill its Mission of helping those with chronic lymphocytic leukemia

Help the non profit CLL Society on Giving Tuesday at https://cllsociety.org/donate-to-cll-society/.

At a recent CLL Society Patient Educational Forum, patients Judy, Leigh Ann, Rosette, Susan, Dave, Bruce and Mark, plus caregiver Beth, stepped in front of our camera and spoke from the heart.

These CLL patients and their caregivers are people just like you. They have felt the same range of emotions. They have had many of the same questions. They have reached out to The CLL Society and they have learned that they are not alone.

Please take a moment to listen to their uplifting messages.

While Brian, Patty, Betsy and Nancy, plus our amazing volunteers, keep the wheels turning, they shoulder a heavy load.

Many CLL patients are still poorly informed of their treatment options. Many still receive sub-optimal care. So we need to be ceaseless in our efforts to reach them.

Your letters of thanks, testimonials, and the goodwill you engender by spreading the word of our services uplifts our spirits and fuels our passion.

Your financial contribution will put tools in our hands.

We will keep on giving.

Please support The CLL Society on Giving Tuesday by making a donation at https://cllsociety.org/donate-to-cll-society/.

Thank you!

Sincerely,

Patricia Koffman, Executive Director
The CLL Society

Smart Patients Get Smart Care.™

Saturday, November 25, 2017

Patient Survey, Free Expert Access for CLL (chronic lymphocytic leukemia) patients, and ASH 2017

Hope for my American friends it was a great Thanksgiving. 

Mine was vegan and I still managed to overeat.

If you haven’t already completed our patient survey, I ask you to do it here: https://cllsociety.org/survey/

The  compiled data from this will be used to inform the providers and payers and industry about the unmet needs of our community. Please help us.

The CLL Society has launched a new pilot project to meet what I see as a glaring and dangerous unmet need especially for underserved CLL populations.

If you live in the USA and have never seen a CLL expert, we are offering a free HIPAA complaint online visit with just such an expert to answer your burning questions.This is only for a small number of patients in this pilot effort


Now I am getting ready for ASH. I first go as a patient to find out what I should do next about my slowly relapsing CLL on ibrutinib, I go as a reporter to learn the latest news and get answers to our questions and report on that news, I go as an advocate to meet with other advocates to ensure all are getting their best care, I go as a family doctor who has many CLL patients in his practice to learn how to best care for them by attending the many CLL oral and poster sessions, I go as a researcher to meet with the other investigators in our consortium from across the county to best leverage our findings to help improve care, and I go as the medical director of the nonprofit CLL Society to promote our work. And finally, I go as a friend to reconnect with the many smart doctors, researchers, advocates and industry leaders from around the world who have done so much and can do so much more to help us all.

ASH is intense, usually 7 AM until late in the evenings with days of prep, miles of walking, tight schedules, little vegan food, and less rest.

But I wouldn’t miss it- it is MECCA for blood cancers, though honestly this year at least after my first take, the 300 plus CLL abstracts seem more evolutionary than revolutionary. 

Stay strong

Brian

Brian Koffman MDCM DCFP, DABFM, MS Ed

Founder and Volunteer Medical Director, CLL Society Inc.
http://cllsociety.org

Founder, http://bkoffman.blogspot.com

PO Box 1390
Claremont, CA
91711

Wednesday, November 8, 2017

New Shingles Vaccine and What it Means for CLL patients

If you haven't had time to participate in our 2017 CLL Patient Survey, please consider doing it today. You can participate online or request a paper survey. Find out more here. If you've already participated, THANK YOU! We are hoping to capture as many voices of CLL as possible, so we can best understand the experience of patients.

You may have read in the news or on the online forums about the recent approval, both in the US and in Canada, of a new shingles vaccine, Shingrix, a killed herpes zoster (HZ) vaccine for adults over 50 years old. You can read more about shingles, the data that led to the specific indication, potential reimbursement issues and my commentary here.

Our next CLL Patient Education Forums will be taking place this Saturday 11/11 in Cleveland, OH.  I will be there and hope you can join me.

We look forward to seeing you there. After ASH 2017 we'll be in Seattle, WA and Bethesda, MD (plus more after the holidays). You'll hear the latest data about CLL and be able to ask questions of CLL Experts. See below for the full schedule, more information and to register. 

Tuesday, October 31, 2017

Survey for Patients with CLL / SLL (chronic lymphocytic leukemia)

Participate in an Important Survey for Patients with CLL/SLL

  • Have you been diagnosed with chronic lymphocytic leukemia or small lymphocytic lymphoma?

  • Do you reside in the United States?

If the answer to both questions is “yes”, please read below. 

The CLL Society Inc. (CLLS) is conducting a research survey. The purpose of the survey is to help us better understand how CLL/SLL (chronic lymphocytic leukemia/small lymphocytic lymphoma) and the treatments you receive have affected your life and the lives of those around you. Your answers will be used to improve our services and patient programs—and possibly how doctors treat CLL/SLL. 
Your answers will be 100% confidential, and no personal identifying information will be collected within the survey. The answers you and other patients provide will be carefully combined and analyzed to create an overall picture of how CLL and its treatment affect the lives of people with CLL. Our goal is to understand CLL from the patient’s perspective. 
At the end of the survey you can choose to participate in the Target gift code offer. The first 500 patients who complete the entire survey will be eligible to receive a $50 gift code that can be spent on the Target.com website, or used within their stores. 
You can participate in one of two ways:
Access the Online Survey HERE
OR
Request a Paper Survey by calling 949-667-4CLL or send an email to research@cllsociety.org and provide your name and address and a survey will be mailed to you.
Questions? Email us at research@cllsociety.org or call 949-667-4CLL
Your Voice Matters!
Brian Koffman, MD

Monday, October 23, 2017

Post ASH CLL Society Patient and Caregiver Educational Forums

ASH is the most important hematology conference and this year there is sure to be clinically relevant news for those of us with CLL. To learn the latest (and the basics too), please join me in Seattle right after ASH with Dr. Pagel and strong team from Swedish Ho. and the Hutch on Dec. 16. The same day, Dr. Wiestner and his team at the NIH in Bethesda will be presenting a similar CLL Society program. To learn about them both and all our other free educational forums register, visit https://cllsociety.org/upcoming-cll-patient-education-programs/ and find the meeting that works best for you.

I wil be at the Cleveland on Nov. 11 and Seattle Dec 16 forums among others, so please come by and say hello.


Tuesday, October 17, 2017

CLL Society, LLS and the Cleveland Clinic Present a Free Patient and Caregiver Educational Forum on Nov. 11 on Chronic Lymphocytic Leukemia

The CLL Society, LLS and the Cleveland Clinic are hosting a Patient and Caregiver Forum on Nov. 11. It is going to be a super educational experience with CLL expert Dr. Hill and others from the Cleveland Clinic there to answer all your questions. Bruce Wright is an amazing patient speaker and I'll be sharing what I have learned about self advocacy. 

Hope to see you there. Here is more information and a link to registration: 

https://cllsociety.org/docs/2017%20Cleveland%20CLL%20Educational%20Forum%20-%20Final.pdf