ASH 2016: Which Patients With Chronic Lymphocytic Leukemia (CLL) Become Resistant to Ibrutinib

This week I'm posting the final installment of my 3-part interview with Dr. Adrian Wiestner from the NIH where we discussed which CLL patients are more likely to relapse when being treated with ibrutinib and the options that are available if that happens. You can read my summary, and watch the interview here: cllsociety.org/2017/06/cll-...

TOMORROW, the 2nd 2017 issue of The CLL Tribune will be published. Watch your email and set aside some time to read the fantastic articles in this issue, written by both patients and CLL experts. Very cool

Stay strong.

We are all in this together.

Brian

ASH 2016: Dr. Seymour on combination therapies for chronic lymphocytic leukemia (CLL)

Combination therapies are the future in CLL. And combinations that include venetoclax are being actively researched.

For good reasons. Venetoclax is a potent drug and a potential closer, wiping the blood and marrow clean of CLL.  Or at least to a level so low that the cancerous clone can't be found.

This week I'm posting on the CLL Society website an interview with Dr. John Seymour from the Peter MacCallum Cancer Centre in Melbourne, Australia when we talked at ASH 2016 about combination therapy with venetoclax. You can view my summary, watch the interview or read the transcript at http://cllsociety.org/20…/…/ash-2016-venetoclax-combination/.

For those of you who didn't catch this last week, check out the new 2 minute video I posted about helping to fulfill the mission of the CLL Society. You can view it at http://cllsociety.org/donate-to-cll-society/. We are so thankful to those of you who provided feedback and support us.

Stay strong

Brian

PS: I will be posting a personal update here very soon.

ASH 2016: Dr. Matt Davids of the combination of TGR-1202 and ibrutinib for relapsed refractory CLL (chronic lymphocytic leukemia)

This week, on the CLL Society website we are sharing a video interview with Dr. Matthew Davids from  ASH 2016 where we discuss a clinical trial that combines two targeted therapies for treating relapsed/refractory CLL, ibrutinib and TGR-1202. You can read the summary and watch the video or read the transcript here . TOMORROW, we'll be publishing the first 2017 issue of The CLL Tribune and marking the 2 year anniversary since our website went live! Watch for it! Two years. WOW! CLL Patient Support Group Meetings This Week Monday, April 3rd at 6 PM in Indianapolis - the CLL and Indolent Blood Cancers Support Group will be meeting. More information here. Tuesday, April 4th at 7 PM in Tucker, GA - the Tucker Family Support Group, sponsored by the Leukemia and Lymphoma Society will be meeting.  More information here.     NEW CLL Patient Support Group Meetings Coming Up Saturday, April 15th at 3 PM in Vienna, VA -  the Washington DC-Area CLL Support Group, sponsored by the CLL Society will be meeting for the first time. More information here. Saturday, April 22nd at 1 PM in the Boston area - the Boston CLL Support Group, sponsored by the CLL Society will be meeting for the first time. More information here.  Sunday, April 23rd at 4 PM in San Francisco -  the San Francisco CLL Support Group, sponsored by the CLL Society will be meeting for the first time. More information here.  ALSO -  We are actively forming CLL-specific support group in a number of cities around the country. To see if your city is one of them, go to our home page  and click on the interest survey for your city. JUST ADDED - Rochester, NY; Milwaukee, WI; Atlanta, GA; Salt Lake City, UT; Huntsville, AL. Not listed, but interested in starting one? Email us at support@cllsociety.org. Thanks! Upcoming Patient Education Meetings Saturday, April 1st from 7:30 AM to 3:00 PM in Atlanta, GA: The Lymphoma Research Foundation will be hosting Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options which will include disease-specific breakout sessions. There is no cost to attend, but registration is required. Find out more information here. ALSO Rick Conner, a CLL patient in the Atlanta area will be manning the CLL Society table and collecting names of those who might be interested in a CLL-specific patient support group. Stop by and say Hello! Thursday, April 6th from 6:00 PM to 8:30 PM in Boston, MA: The Lymphoma Research Foundation will be hosting Ask the Doctor: Updates on CLL/SLL. There is no cost to attend, but registration is required. Dinner will be provided for registered attendees. Find out more information here.  Thursday, April 20th from 6:00 PM to 8:30 PM in Cherry Hill, NJ: Anthony Mato, MD, MSCE from the Abramson Cancer Center in Philadelphia will be chairing the patient educational forum, CLL in 2017: State of the Art Management from a Patient's Perspective with his team. Brian Koffman, MD from the CLL Society will also be speaking. There is no cost to attend, but registration is required. Attendance is limited and registration will be closed when attendance limits are reached. Dinner will be provided for registered attendees. Find out more information here.  Monday, April 24th in Columbus, OH and streaming live: Ask the Expert: Nutrition & Chronic Lymphocytic Leukemia will be held at The James at Ohio State University. This event is free, but pre-registration is required. Visit https://nutritionandcll.eventbrite.com  to register or for more information, please call JamesCare for Life at 614-293-6428. Find out more information here.  In the meantime.... Stay strong. We are all in this together. Brian Koffman, MD March 28, 2017 http://cllsociety.org

How Ibrutinib and other perhaps other BTK inhibitor work over time in CLL (chronic lymphocytic leukemia)

At ASH 2016 in San Diego, CA, I had the honor of once again interviewing Dr. Wiestner from the NIH (National Institute of Health) about the prototype BTK inhibitor, ibrutinib and how and why it works so well in CLL.

We have known for a while that for its survival and well-being, our cancer is dependent on BCR (B cell receptor) signaling. Blocking BTK (Bruton’s Tyrosine Kinase), blocks that BCR signaling and that blocking usually leads to our cancer’s retreat.

This is a well-understood critical tenet of why ibrutinib works as well as it does, but it is hardly the whole story as we are learning over time.

At the NIH, Dr. Wiestner and his team not only did some of the earliest clinical research on ibrutinib, but also has been doing the bench science on exactly how it works and its impact changes over time.

Please enjoy the interview here: http://cllsociety.org/2017/02/ash-2016-wiestner-ibrutinib-cll/

Stay strong.

We are all in this together.

Brian

http://cllsociety.org

More good news about my CLL (chronic Lymphocytic leukemia)

Let me set this up.

My  particular flavor of CLL has a complex karyotype and a deletion of the short arm of the 17th chromosome. And a clonal Notch1 mutation- This is all bad.

What that means is that my CLL is unstable and has a tendency to mutate. These mutations can lead to more aggressive clones of CLL that are resistant to therapy, or in worse cases transform into nastier blood cancers.

That last process is called Richter's Transformation.

I have now been on ibrutinib for over four years and 8 months.

Most Richter's Transformation happens in the first two years of treatment so I am well past the high risk period for that life threatening development. For that I am deeply grateful.

I do have a recognized mutation that does confer resistance to ibrutinib in PLCƔ2. This mutation can turn back on the signaling blocked by ibrutinib, essentially rendering the drug impotent. 

My small subclone of CLL that has the PLCƔ2 mutation has been slowly growing for about two years now. That is until my last blood test that showed it had stabilized over the last 84 days, and had in fact dipped a tiny amount.

For that I am also grateful.

This is quite unusual as the usual pattern is a relentless climb in the number of resistant cells.

Why it happened and what I can do to keep it going down is a mystery. I would like to think it is because I have been exercising more, but that is a wild conjecture. But after I finish this post, I will work-out, just in case.

I know this might be just a pleasant respite on the road to relapse, but I'll take this sweet repose. And wish for more

For those whose CLL is more tame, the news is nearly always good, but most folks with my nasty mix of genetic freakiness have already progressed a long time ago.

While I was at the 2016 ASH meeting in San Diego last month, I had the opportunity to sit down with Dr. George Follows to talk about real world data on 300+ CLL patients being treated with ibrutinib compared to clinical trial data. You can view our interview here on the CLL Society website.

This is important as too often the data is much better in the clinical trials than in the community, but for ibrutinib, this does not appear to be the case. And for those without bad markers, the results are very encouraging. 

Facebook Live on Genetic Testing in CLL this Sunday, Dec. 4th at 10:30 AM Pacific Time at https://www.facebook.com/CLLsociety/

I am very grateful and a little nervous to not only be presenting our original research (Factors That Influence Patient Treatment Decision Making in the Era of Novel Agents: An Internet-Based Survey of 281 Patients with Chronic Lymphocytic Leukemia (CLL) to the 27,000 expected hematologists at the huge ASH meeting this weekend, and interviewing all your favorite experts and reporting from all the CLL meeting. Now I will be hosting a Facebook Live Interactive workshop of the importance of genetic testing before treatment in CLL.  Join me, ask questions and cheer me along at 10:30 AM Pacific Time on this Sunday, Dec. 4th, live from ASH for my first ever Facebook Live all about CLL  and genetic testing.Your link is  https://www.facebook.com/CLLsociety/

Unlike other commercial websites, our nonprofit never asks you to sign in to access all our fresh and live material, and this is no exception, but it does help us if you would voluntarily sign up to get our helpful alerts and patient friendly newsletter at http://cllsociety.org/newsletter-sign-up/

Thanks. Stay strong.

We are all in this together.

Brian

Founder and volunteer medical http://cllsociety.org

ASH Abstract: Factors That Influence Patient Treatment Decision Making in the Era of Novel Agents and my Trip to Serbia

Today in the Conference Coverage section of the CLL Society website, we’ve posted a summary and link to the ASH abstract we wrote based on the results from our Reader Poll in the Q1 2016 issue of The CLL Tribune where we asked you about what was important to you when making treatment decisions for your CLL. You can view my article and see the abstract here.

Leaving on a jet plane. Economy class. Red-eye. Tight connection in Germany. Leave on one day, arrive the next in Belgrade. Landing at the Nicolas Tesla Airport.

This is another familiar story as I’m packing my bags to attend the 2016 CLL Horizons meeting in Serbia this week. I will serve as faculty and part of the steering committee for the newly forming CLL Advocacy Network, a global network of organizations representing people with CLL. The main goal of this first CLL Horizons conference is to build capacity for international patient advocacy organizations to support people affected by CLL.

In addition to getting ready to getting ready for the next ASH meeting, we’re also working on the content for the next issue of The CLL Tribune. If you have a question for our Ask The Doctor section, you can submit it here. No question is too silly to ask and you can be sure others have the same questions. 

Patient and Caregiver Support Meetings

November 7th @ 6:00 pm in Indianapolis, the CLL and Indolent Blood Cancers Support Group will be meeting. See more information here.

If you’re aware of other CLL Patient Support Group meetings, let us know and we’ll post them. Thanks!

Post-ASH CLL Patient Educational Forum at City of Hope

We're excited to announce that on Saturday, December 17th, in partnership with City of Hope Medical Center and the Leukemia and Lymphoma Society, the CLL Society will be hosting the second annual Post-ASH CLL Educational Forum at City of Hope. Dr. Tanya Siddiqi will be presenting on the latest data on Diagnosis and Frontline Treatment and Dr. Steven Rosen will present on Relapsed Disease and Novel Therapies. You can access the flyer here and pre-registration is requested. We look forward to seeing you there.

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:

·      Wednesday, November 16^th 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.

·      Friday, November 18^th from 7:30 AM to 2:15 PM at the Hilton Hotel City Avenue in Philadelphia, PA: The Abramson Cancer Center in partnership with the Leukemia and Lymphoma Society will be hosting 9th Focus on Leukemia, Lymphoma, Myeloma and Bone Marrow/Stem Cell Transplantation Conference. Dr. Anthony Mato is the featured speaker for the CLL Workshop. You can find out more information and register here.

·      Wednesday, December 14^th at 6 PM at the Washington Marriott Georgetown in Washington DC: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Dr. Chaitra S. Ujjani from Georgetown University Hospital 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 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 3 confirmed meetings are:

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

·      Thursday, November 15^th in Independence, OH. 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

11/7/16

http://cllsociety.org

ASH Abstract: Decision Making by Patients with CLL

Hi,

I am so excited.

If you haven’t already, please check out our ASH abstract, https://ash.confex.com/ash/2016/webprogram/Paper94576.html 

If you notice the little stethoscope by the title of our abstract, that denotes our abstract that is clinically relevant. We are pretty thrilled about our abstract being accepted.

It was very competitive with several good CLL papers rejected.

It is most unusual for an abstract by a patient or non hematologist to get accepted to the therapy sessions, Those are the sessions where there is the most action and traffic.

Most importantly, we believe what we found in our little survey will make a difference in how patients are treated going forward. And we  have plans for a much bigger survey next year if we can marshall the resources.

Thanks to all of you who participated. Together, we are moving the needle.

Stay strong.

We are all in this together.

Brian

http://cllsociety.org