Sunday, September 25, 2016

Frontline Therapy for CLL (chronic lymphocytic leukemia), And on Stress and Living Long

This week in The Basics section of the CLL Society's website, we’ve posted an article that I wrote about Frontline Therapy that what factors are considered when making treatment decisions for frontline therapy. You can view that article tomorrow here. http://cllsociety.org/2016/09/frontline-therapy-cll/

The next issue of The CLL Tribune will be available on Wednesday. It’s hard to believe it’s been a year since our first issue. Stay tuned for a special email alert!

A CLL Doctor List is posted in our CLL Toolbox. This list is composed of CLL physicians recommended by our readers. Thanks to those who have provided updates and additions since we posted it. We’ll be incorporating them soon! You can access it here. http://cllsociety.org/toolbox/cll-doctors/

It is not a vetted list, but a list from the readers.

I am in Ohio now for my every 12 week rendez-vous with Dr. Byrd and the team from OSU to check on the status of my tiny resistant clone. 

I am anticipating more good news- that things are all stable, but it is always a bit nerve wracking waiting for my lab results. My palpable nodes remain small, but I am tired.

I have been under terrible stress related to my work as a family doctor. That paid work, which I love and hope to continue for many years if at all possible, supports all my activities as the unpaid volunteer medical director of the CLL Society. 

I am wholly unconvinced that stress makes CLL worse. If it did, mine would have exploded by now.

From here, I fly to Tampa to meet with Dr. Javier Pinilla-Ibarz out of Moffitt to look at ways we can work together to help CLL patients and set up a support group.

Here's a little cool travel news- completely unrelated to CLL.

Guess who was standing next me in the custom lines when we returned to LAX from Lisbon? 

I was not more than 5 feet away from Mic Jagger who looked thin and fit and very healthy.  As I said, maybe stress and a frantic lifestyle is good for you.

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Wednesday, September 21, 2016

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 3rd at 6:00 PM. More information can be found here.

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

San Diego, CA: UCSD CLL Support Group October 5th 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 1st 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 8th 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 21st in Madison, WI. More details in the flyer. Access it here.
·      Saturday, September 24th in Framingham, MA. More details in the flyer. Access it here.
·      Thursday, September 29th in Portland, OR. More details in the flyer. Access it here.
·      Tuesday, October 4th in Phoenix, AZ. More details in the flyer. Access it here.
·      Thursday, October 6th in Park Ridge, NJ. More details in the flyer. Access it here.
·      Tuesday, October 11th in Bloomington, MN. More details in the flyer. Access it here.
·      Tuesday, October 25th in Golden, CO. More details in the flyer. Access it here.
·      Saturday, October 29th 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


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Monday, September 19, 2016

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 1st 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 19th 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 8th 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 17th in Long Island, NY. More details in the flyer. Access it here.
·      Wednesday, September 21st in Madison, WI. More details in the flyer. Access it here.
·      Saturday, September 24th in Framingham, MA. More details in the flyer. Access it here.
·      Thursday, September 29th in Portland, OR. More details in the flyer. Access it here.
·      Tuesday, October 4th in Phoenix, AZ. More details in the flyer. Access it here.
·      Thursday, October 6th in Park Ridge, NJ. More details in the flyer. Access it here.
·      Tuesday, October 11th in Bloomington, MN. More details in the flyer. Access it here.
·      Tuesday, October 25th in Golden, CO. More details in the flyer. Access it here.
·      Saturday, October 29th 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


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Thursday, September 15, 2016

World Lymphoma Awareness Day





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Friends,

Today is World Lymphoma Awareness Day!

The CLL Society motto is Smart Patients Get Smart Care™. 

If you have lymphoma, insist that you are told what subtype you have.

If you have CLL/SLL, a very heterogeneous subtype of lymphoma, know whether you have an indolent slow growing type, or an aggressive fast progressing type.

The vision of the CLL Society is to act to help shape a smarter, brighter future for those with CLL and related B cell blood cancers by encouraging and supporting smart patients, smart providers, smart healthcare delivery systems, and smart therapies.
If you are able to help the CLL Society to continue to educate your fellow patients so they can get the best possible care, consider making a donation here.

We appreciate your support

Stay strong.

We are all in this together

Brian Koffman, MD
Sept 15, 2016




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Thursday, September 8, 2016

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


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Wednesday, September 7, 2016

ASCO 2016: Dr. Susan O’Brien on GDC-0853, a novel BTK inhibitor for CLL

Friends,

Well, I’m packing my bags again in preparation to speak at the European School of Hematology meeting being held in Portugal this coming weekend and then will take a few days R&R before heading back to what looks to be a really busy fall. Busy is good!

This week in the Conference Coverage section, we’ve posted an interview with Dr. Susan O’Brien out of UCI where we discussed an interesting abstract from ASCO 2016. It presents the pre-clinical data for a new molecule, GDC-0853 that has different way to bind to and block the BTK pathway, the same pathway that ibrutinib blocks. You can view that interview here. http://cllsociety.org/2016/09/asco-2016-dr-obrien-gdc-0853/

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. 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 12th at 6 PM at The Westin Seattle in Seattle, WA: The Lymphoma Research Foundation will be hosting Updates on Lymphoma and Treatment Options as part of their Ask the Doctor series. John Pagel from The Swedish Cancer Institute is the featured speaker. You can find out more information and register here. Dinner will be served and there is no charge to attend.
·      Monday, September 19th 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 8th 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 10 confirmed meetings are:
·      Tuesday, September 13th in Orlando, FL. More details in the flyer. Access it here.
·      Saturday, September 17th in Long Island, NY. More details in the flyer. Access it here.
·      Wednesday, September 21st in Madison, WI. More details in the flyer. Access it here.
·      Saturday, September 24th in Framingham, MA. More details in the flyer. Access it here.
·      Thursday, September 29th in Portland, OR. More details in the flyer. Access it here.
·      Tuesday, October 4th in Phoenix, AZ. More details in the flyer. Access it here.
·      Thursday, October 6th in Park Ridge, NJ. More details in the flyer. Access it here.
·      Tuesday, October 11th in Bloomington, MN. More details in the flyer. Access it here.
·      Tuesday, October 25th in Golden, CO. More details in the flyer. Access it here.
·      Saturday, October 29th 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
9/6/16