Learning from and about cancer (chronic lymphocytic leukemia or CLL) by Dr. Brian Koffman: September 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.

Labels: Chronic lymphocytic leukemia, CLL, frontline therapy, Mic Jagger

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

Labels: ASCO 2016, Chronic lymphocytic leukemia, CLL, Dr. O'Brien, Idelalisib, Liver Abnormalities

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.