ASCO 2016: Dr. Susan O’Brien where she discusses frontline data on Acalabrutinib in CLL( chronic lymphocytic leukemia)

We are 8 weeks out from the 2016 annual meeting of the American Society of Hematology and realize that we have quite a few interviews from the ASCO and EHA meetings that have not yet been posted, so we’ll be posting twice a week until they are all out the door on the CLL Society's website. 

If you have not yet participated in our Reader Poll to give us feedback about how we’re doing and what topics you would like to see covered in the future, please take 2 minutes and do so if you have time. You can access it here. https://q32016ask.questionpro.com/

We just posted an interview from ASCO 2016 with Dr. Susan O’Brien where she discusses frontline data on Acalabrutinib, a promising second-generation BTK inhibitor. You can access my article, the abstract and our interview here. http://cllsociety.org/2016/10/asco-2016-acalabrutinib-frontline-cll

NEW Patient & Caregiver Support Meetings

Tuesday, October 18^th at 6:30 PM at the Levine Cancer Institute in Charlotte, NC – the first meeting of a new CLL Patient & Caregiver Support and Education Group. Patients and family caregivers are welcome. Find out more about dates and registration here. http://cllsociety.org/docs/CLL%20Patient%20Caregiver%20Support%20Group%20Levine%20Cancer%20Center.pdf

Tuesday, November 1^st at 6:30 PM at the Moffitt McKinley Outpatient Center in Tampa, FL – the first meeting of a new CLL Patient & Caregiver Support and Education Group. Patients and family caregivers are welcome. You can find more information here! http://cllsociety.org/docs/Tampa%20Patient%20Support%20Group%20Flyer.pdf

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

Thanks.

10/6/16

http://cllsociety.org

Dr. Susan O'Brien on liver inflammation from idelalisib for the treatment of CLL (chronic lymphocytic leukemia)

This week in the Conference Coverage section, we’ve posted another interview with Dr. Susan O’Brien out of UCI where we discussed an ASCO 2016 abstract about liver inflammation associated with idelalisib in relapsed CLL patients. You can view that interview here. http://cllsociety.org/2016/09/asco-2016-liver-inflammation-idelalisib-cll/

We’re pleased to announce that we’ve posted a CLL Doctor List in our CLL Toolbox. This list is composed of CLL physicians recommended by our readers. We appreciate all who contributed to the list. Thank you! You can access it here. http://cllsociety.org/toolbox/cll-doctors/

Upcoming Patient Support Meetings

Indianapolis, IN: CLL and Indolent Blood Cancers Support Group October 3^rd at 6:00 PM. More information can be found here.

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

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

Live in the Charlotte, NC Area? A new CLL Patient & Caregiver Support and Education Group will be starting in partnership with the Levine Cancer Institute – Morehead in Charlotte, North Carolina. The first meeting will take place on Tuesday, October 18th at 6:30 PM. 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:

·      Wednesday, September 21st at 6 PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Rick Furman from New York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical Advisory Board) is the featured speaker. You can find out more information and register here. Dinner will be served and there is no charge to attend.

·      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.   

Heads Up! The CLL Society has become aware of a series of unbranded patient education meetings coming up in September and October (with a few more to come in November and December). 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. After tonight’s meeting, the next 8 confirmed meetings are:

·      Wednesday, September 21^st in Madison, WI. More details in the flyer. Access it here.

·      Saturday, September 24^th in Framingham, MA. More details in the flyer. Access it here.

·      Thursday, September 29^th in Portland, OR. More details in the flyer. Access it here.

·      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. 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. Access it here.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

9/19/16

http://cllsociety.org

http://bkoffman.blogspot.coms

ASCO 2016: Dr. O'Brien on what happens when we fail ibrutinib for our CLL (chronic lymphocytic leukemia)

Last week in the Conference Coverage section, we’ve posted another interview with Dr. Susan O’Brien out of UCI where we discussed an important paper that cleared up some confusion about what happens when patients fail on ibrutinib. You can view that interview here. http://cllsociety.org/2016/09/asco-2016-prior-therapy-ibrutinib-outcome/

This is a really important topic that has been badly misunderstood and highly recommend you take a look at the interview.

We are pleased to announce that a new CLL Patient & Caregiver Support and Education Group will be starting in partnership with the Levine Cancer Institute – Morehead in Charlotte, North Carolina. The first meeting will take place on Tuesday, October 18th at 6:30 PM. Patients and family caregivers are welcome. Find out more about dates and registration here.

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!

From time to time, we will make you aware of in-person meetings coming up for those of us affected by CLL and lymphoma, specifically:

·      Monday, September 19^th at 10 AM at The Grand Central Hotel in Glasgow, Scotland: The CLL Support Association (CLLSA) is hosting a 2016 Glasgow Members Conference. Dr. Alison McCaig a consultant in the haematology department of the Royal Alexandra Hospital will be the featured speaker. You can find out more information and register here. Lunch and refreshments will be served and there is no charge to attend for members.

·      Wednesday, September 21st at 6 PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Rick Furman from New York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical Advisory Board) is the featured speaker. You can find out more information and register here. Dinner will be served and there is no charge to attend.

·      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.

Heads Up! The CLL Society has become aware of a series of unbranded patient meetings coming up in September and October (with a few more to come in November and December). 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. After tonight’s meeting, the next 9 confirmed meetings are:

·      Saturday, September 17^th in Long Island, NY. More details in the flyer. Access it here.

·      Wednesday, September 21^st in Madison, WI. More details in the flyer. Access it here.

·      Saturday, September 24^th in Framingham, MA. More details in the flyer. Access it here.

·      Thursday, September 29^th in Portland, OR. More details in the flyer. Access it here.

·      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. 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. Access it here.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

http://cllsociety.org

ASCO 2016: Dr. Susan O'Brien on Acalabrutinib in Frontline CLL

Dr. Susan O'Brien from the University of California at Irvine share the important news from ASCO 2016 relating to CLL.

While ASH and EHA are solely focused on blood cancers, ASCO covers all malignancies, especially solid tumors, so there tends to be less CLL news to report from the Chicago ASCO meeting.

That said, there were several abstracts from ASCO 2016 that deserve our attention.

One involves acalabrutinib,  a promising second generation BTK inhibitor much like ibrutinib, but more selective.

The hope is that it will retain ibrutinib's efficacy and have fewer side effects

The early trial data is positive.

This abstract that gives frontline information for the first time. Response rate was an impressive 97% and there has been no progression.

Here is a link to the trial for all the details. Dr. Byrd was the lead author who also was the lead author on the pivotal ibrutinib article published in NEJM

Here is our interview with Dr. O'Brien;

The news is very encouraging, but we need more data with more patients to be sure what we are seeing bears out.  So far, so good

ASH 2014: Interview with Dr. Susan O'Brien and Dr. Bruce Cheson on CLL (chronic lymphocytic leukemia)

There is much to report from ASH 2014, and this sweet interview from Medscape offers a short synopsis of some of the highlights.

Over the coming weeks I plan to fill in the details with more comments and videos, but this is a nice and succinct place to start.

There are some priceless moments, thanks to the wise and dry humor of Dr. Cheson and the honest and patient centric attitude of Dr. O'Brien.

First, right up front, I really appreciate that Dr. Cheson points out just how out of date are even the most recent CLL guidelines that were developed only a few years ago.

Are you listening, community oncologists? The published CLL guidelines are out of date.

I am glad he also asked about the secondary malignancies with chemo-immunotherapy, a question too often swept under the carpet in many presentation on CLL treatment. We know there is a small but real risk of MDS or myelodysplastic syndrome (for an explanation of the relationship of MDS and CLL from Dr. Steensma, click here), a difficult to treat form of cancer that presents as bone marrow failure, that may come along as a late and serious complication with FCR (fludarabine, cyclophosphamide, and rituximab), but we don't have much data yet on the risk with BR (bendamustine and rituximab).  Because bendamustine is a DNA damaging alkylating agent similar to chlorambucil (Leukeran) and cyclophosphamide (the C in FCR), it is likely that MDS will also present as a late, but hopefully infrequent ugly complication after BR.

What we do know already is that now that we are living longer with our CLL, we are getting more secondary cancers (click here for a reminder of our risks), especially blood cancers.

Don't miss Dr. Cheson's hand gesture when Dr. O'Brien talks about the minority of patients that do so very well on FCR, a topic that we have visited here more than once (click here to hear Dr. Hallek at  iwCLL discuss who gets the most benefit from FCR).

Another highlight comes right after the honest discussion of the follow up important trial of the two old school chemo-immunotherapies that are duking it out for supremacy in the CLL world, namely the  FCR versus BR (for more on this trial from Dr. Sharman click here). After Dr. O'Brien's honest and upbeat response, Dr. Cheson asks her, quite properly in this era of new treatment options: Do we care?

Yet another interesting moment occurs when he asks Dr. O'Brien to choose between ibrutinib, idelalisib, and ABT-199: If they were all available: Which one would you pick?

She refuses to answer.

Their discussion on the meaning of minimal residual disease or MRD negativity in the era of novel therapies is both informative about what we know but even more so about what we don't know.

Only time and trials will help sort al this out.

Dr. O'Brien has her own hand gesture when she describes just how much above 50% was the progression free survival curve for ABT-199 at 18 months. We need more data. And more time to sort this all out.

I wish I had produced this video. I don't usually see the role of my blog to share what is already available on other websites, but this is good stuff and there was much in it that cried out for commentary and context. I wanted everyone who reads my blog to have the link with it here.

Please enjoy this Medscape Interview:

CLL: It's the Best -- and Most Confusing -- of Times

Thanks for your help and support.

                                          

ASCO 2014: Dr. O'Brien Discusses Improved Trial Designs, CT Scans and the role of Chemo-immunotherapy In Frontline Therapy in CLL (chronic lymphocytic leukemia)

I am back from ASH 2014 with some informative video interviews from Drs. Hillmen, Byrd, Burger, Wiestner, Kipps. Sharman, Roberts, Pagel, and Kay. The congress was a huge success and I will be reporting on the important abstracts and news over the next few months first here and then on our new website for the CLL Society Inc.

I also am very excited with the video interviews from ESH in Greece including ones with Furman, Porter, Hallek, Stilgenbauer, Wu, and Brown.

But first I have to share this fourth and final thoughtful audio interview with Dr. Susan O'Brien despite all its hisses and pops.

We pick up on the issue of ethical trial design from the third part of her interview on the issue of equipoise. If you missed part 3 or part 1 or 2, please enjoy by clicking on the numbers.

In this segment, Dr. O'Brien and I discuss the place of CT scans in clinical trials and in the real world of CLL therapy. Her answer is not black or white but is balanced and well considered.

Next Dr. O' Brien gives as a nuanced response to the question of what might be the possible role for chemo-immunotherapy in and out of trials.

Spoiler alert: Consider FCR frontline if you are young, healthy, mutated, and trisomy 12. But only under those circumstances>

 Here is Dr. O'Brien



More soon from ASH and ESH.

And thanks to the well over 300 of you that have completed our survey. If you haven't done it yet, please, take a few minutes to add your voice to the others as to what are your particular unmet needs in living with CLL. We are building the nonprofit CLL Society Inc. in response to those needs.

We will be taking the survey offline in one week on December 19, so please don't delay.

Here's the link.

And a very special thanks to those of you who have generously given a tax deductible donation to help us with our website construction and developing our CLL specific support groups.

More details to follow soon after we have analyzed the survey results.

We still are welcoming any contribution, large or small. At the suggestion of several of you, we have added a donate button at the top of the blog and on our placeholder website for the CLL Society Inc.

Thanks for all your help.

We are all in this together.

                                           

ASCO 2014: Dr. Susan O'Brien Outlines Open Trials of Novel Agents and Equipoise in Trial Design for CLL (chronic lymphocytic leukemia)

In the third part of my interview at ASCO 2014, Dr. O'Brien points out the advantages of being in a clinical trial, including the real financial advantages of getting the trial drug for free. However do remember that the standard of care of drugs such as rituximab are not free. The labs and imaging are not usually free.

The one exemption are trials at the NIH where all costs are paid by our tax dollars. This is is the only way that most of those with no insurance or from out of country can afford  to be in a  clinical study.

Some of the active trials Dr. O'Brien asks us to consider is the phase 1 trial of the very promising second generation BTK inhibitor, ACP-196 that seems to be more selective and has longer binding. Nothing published yet, the early buzz is positive

TG Therapeutics has its next generation anti CD-20 monoclonal antibody and its PI3K inhibitor combined in a promising trial.

The CLL arm of trial of "Ublituximab + Ibrutinib in Select B-cell Malignancies" is already closed.

There is an ibrutinib versus ibrutinib plus rituximab trial at MD Anderson for relapsed patients. Free ibruinib!

The list keeps growing. Please check out clinicaltrials.gov when you are considering therapy. We need more options and the only way we get them is through trials, and the only way trials happen is if patients enroll (and their doctors recommend them).

Finally Dr. O'Brien eloquently addresses the issue of equipoise in clinical trials. This ASCO post article from 2013 should be mandatory reading for all patients and all trialists. Please listen carefully to all that she has to say, and how these breakthrough medication have changed how we should design future research. There are lives in the balance.

I love her blunt talk: "They will have to allow cross-overs."

Here is Dr. O'Brien. Again, my apologies for the poor audio quality.



If you haven't heard the prior two sections of the interview, please check them out.

Big news here in the next day or two.