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 website, or used within their stores. 
You can participate in one of two ways:
Access the Online Survey HERE
Request a Paper Survey by calling 949-667-4CLL or send an email to and provide your name and address and a survey will be mailed to you.
Questions? Email us at 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 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:

Thursday, September 28, 2017

Please read the Third 2017 Issue of The CLL Tribune

Welcome to the Third 2017 Issue of The CLL Tribune.
ClicK here: to read the Front Page.
We've Come a Long Way-Together.
We must be doing something that is needed as over 3000 visited the website the first day the newsletter was posted. I am proud and humbled by that response.
It's hard to believe that two years have passed since the first issue of the CLL Tribune. Time goes by so quickly. And, even more remarkable, so much has happened in the CLL community in the last two years. While effective new therapies are in use, and promising ones are on the horizon, statistics alone estimate that more than 40,000 people were diagnosed with CLL during this time. But and the CLL Tribune were both there to help the newly diagnosed, as well as the CLL veteran. More than 2,500 people subscribe to the quarterly newsletter and the number climbs monthly.
The CLL Tribune and the CLL Society's website, however, would not be possible with you-the CLL patient or caregiver who walks your own special journey with this still largely incurable disease. More than 45 of you have written newsletter articles to share your knowledge and experience. We would love to have more patient or caregiver authors - reach out to us here. Twenty-seven have stepped up to lead CLL Society patient support groups in their cities with more planned to start in the near future. More than 1,000 have participated in our patient and caregiver surveys. Plus, your tax deductible contributions to the CLL Society have helped keep our mission alive. Find out more about all the things we have accomplished together
Thank you all. Stay strong. We are all in this together.

Tuesday, September 26, 2017

CLL Ireland: Dr. Munir on Combination Therapies in chronic lymphocytic leukemia

I'm in Alaska this week with my daughter's family and just enjoyed a cold and blustery day glacier cruise. I'm finally feeling a bit better though I still have a deep chest cough. 

We have a series of CLL Educational Forums planned and have opened registration for 3 of them so far. More to come! See below for dates and locations. Registration sites will be open as details are finalized. We look forward to seeing you there.

This week, as it is the end of the quarter, we'll be publishing another issue of The CLL Tribune. So much great information! You will get that special Alert soon! 

Last April I traveled to Ireland for the launch of the CLL Ireland organization during a patient program held on a Saturday in Dublin. During that time, I had a chance to talk to Dr. Tal Munir from the UK about the research they are doing at Leeds on combination therapies in CLL. You can read my article, watch the interview or read the transcript
CLL Patient Support Group Meetings Coming Up

Tuesday, September 26th at 7:00 PM in Berea, OH - The Northeast Ohio CLL Patient Support Group, sponsored by the CLL Society, will be meeting. More information here.
Tuesday, September 26th at 7:00 PM in Rochester, NY - The Rochester NY CLL Support Group, sponsored by the CLL Society, will be meeting. More information here
Saturday, September 30th at 10:00 AM in Belmont, NC - The Charlotte CLL Patient Support Group, sponsored by the CLL Society, will be meeting. More information here
Saturday, September 30th at 10:30 AM in Tampa, FL - The Central Florida CLL Support Group, sponsored by the CLL Society, will be meeting. More information here

Note: new location for this meeting.Monday, October 2nd at 6:00 PM in Indianapolis, IN - The CLL and Indolent Blood Cancers Support Group will be meeting. More information here

ALSO - We are actively forming CLL-specific support groups in a number of cities around the country.  There has been recent interest in forming support groups in the following cities: 

Complete the interest survey and let's see if we can get one going! See what other cities are looking to form support groups by clicking here. Not listed, but interested in starting one? Email us at Thanks!

CLL Patient Education Meetings 

CLL Society Sponsored Meeting

SAVE THE DATE: The CLL Society will be hosting a series of CLL Patient Educational Forums. Mark your calendars! 
There is no charge to attend, but registration is required!
November 4th - University of California, Irvine in Orange, CA with Dr. Susan O'Brien and Dr. Richard Van Etten. More information hereRegister here.

November 11th - Cleveland Clinic in Cleveland, OH with Dr. Brian Hill 
Hill and Dr. Matt Kalaycio. More information hereRegister here.
December 16th - Swedish Cancer Center in Seattle, WA with Dr. John Pagel. More information hereRegister here

December 16th - National Institute of Health in Bethesda, MD with Dr. Adrian Wiestner.

January 6th - Dana Farber Cancer Institute in Boston, MA with Dr. Matthew Davids.

January 6th - Moffitt Cancer Center in Tampa, FL with Dr. Javier Pinella.

January 13th - City of Hope in Duarte, CA with Drs. Steven Rosen and Tanya Siddiqi. 

January 27th - Duke Cancer Institute in Raleigh, NC with Dr. Danielle Brander

Sunday, August 13, 2017

American Society of Hematology (ASH) 2016: Dr. Adrian Wiestner on Failure of ibrutinib in chronic lymphocytic leukemia

In my interview from ASH 2016 in San Diego, Dr. Adrian Wiestner of the National Institutes of Health talks about the patients who fail ibrutinib due to disease progression.
Our interview covers important considerations for all patients when planning chronic lymphocytic leukemia treatment.
Take Away Points:
  • Responses to single agent ibrutinib in CLL have been surprisingly robust and durable.
  • Early relapses, usually within the 1st year, on ibrutinib are often Richter’s Transformation (RT). This is a more aggressive lymphoma that may have been there already and only becomes apparent when CLL has been treated.
  • RT carries a poor prognosis, but new treatments using checkpoint inhibitors (PD-1 inhibitors) or CAR-T (chimeric antigen receptor- T- cells) are promising new options in clinical trials.
  • Later relapses of CLL are often related to a mutation where ibrutinib binds (C481), rendering it much less potent.
    • It is unclear as to whether this is a new mutation that develops under the therapeutic pressures of ibrutinib or is one that was present before at levels too low to detect. Emerging evidence suggests the latter.
    • This is a slower moving relapse than with RT and gives the doctor and patient time to consider their next move.
  • Combination therapies may not be necessary for all patients, but rather a sequential use of drugs may make more sense for some patients.
Here is an article from ASCO 2017 on Richter’s Transformation after novel agents:
Here are two abstracts offering information on checkpoint blockade for RT:
Here is my interview with Dr. Wiestner:
Lingering Questions:
How to best use these drugs is not a trivial or strictly academic pursuit.
In Dr. Byrd’s Cake of Cure, he points out that while we don’t know the right mix to cure our chronic lymphocytic leukemia, we are getting closer.
I tend to believe that we should carpet bomb the CLL with a cocktail of multiple novel agents so that not one errant cell survives.
But is that even possible? And what if a few of the nastiest cells survive with all their natural checks and balances wiped out in the attack?
Does sequential therapy offer a chance at a longer life as Dr. Wiestner suggests?
These are questions only more research will answer.