Thursday, December 1, 2016

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

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Monday, November 28, 2016

PAN Foundation has Reopened its CLL (chronic lymphocytic leukemia) Financial Assistance Fund

Friends,
It is tough enough to have CLL, but for those of us on Medicare, the cost of some treatments can be prohibitive.
Organizations such as LLS and PAN (Patient Access Network) offer help through industry-funded pools of financial aid for those who qualify.
Here is a little early holiday gift for some of our readers.
The exciting and timely news that we have confirmed we know is that the PAN CLL financial aid fund is finally reopening on Monday, Nov. 28, 2016. We know it because PAN has chosen the CLL Society to be their partner for offering peer-to-peer CLL counseling. We have been working hard to train volunteers and to develop the policies and procedures needed to protect your privacy and offer robust help. The CLL Society is very proud to partner with PAN.
With your help, we do more than delivering the latest in-depth news in an understandable fashionway, covering ASH and the important medical conferences with interviews with the experts and daily updates., We are also producing important research that can positively influence our future care, advocating for all us around the world, and now offering peer-to-peer support from trained volunteers
Thank you for being part of the CLL Society.
Unlike other web sites, we don’t require visitors to register to gain access to our material, but honestly the number of subscribers is a metric that our supporters assess when considering the size of our grant applications. Without significant grant support, we can’t possibly do everything we are asked.that patients request. If you like what we are doing, please spread the word and ask other friends to subscribe. It really helps. You know that tell us that the news, services, and updates we share are important, relevant and helpful.
No one knows how long it will stay open, so if you need financial help for your meds, I would strongly suggest that you apply applying soon.
You can apply for assistance two ways.
Apply over the phone at 1-866-316-7263 Monday through Friday, 9 a.m. to 5 p.m. EST
OR
Visit the patient portal
So grab seize this early holiday gift while you still can and please tell everyone to join our community and sign up for our alerts and newsletters.
We are grateful for your participation in our work.
Stay strong.
We are all in this together.
Founder and still volunteer medical director of the CLL Society

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Monday, November 21, 2016

Professor Hallek: The micro-environment in CLL(chronic lymphocytic leukemia)

Preparations are underway for the annual meeting of the American Society of Hematology, or ASH as it’s commonly referred. We’re scheduling interviews with CLL experts, scheduling meeting with current and potential supporters of the CLL Society and preparing our poster for the CLL Poster Session on Monday, December 5th! So much to do, so little time. .

Today in the Conference Coverage section, we’ve posted an interview with Professor Michael Hallek where he discusses the role of the microenvironment in CLL and why it is an important target. You can view my article and see the interview here. http://cllsociety.org/2016/11/prof-hallek-microenvironment-cll/

Patient & Caregiver Support Meetings

November 21st @ 7:00 PM in Duarte, CA, the City of Hope CLL Support Group will be meeting. See more information here

Patient Education Meetings

Saturday, December 17th - Post-ASH CLL Patient Educational Forum at City of Hope. The CLL Society, in partnership with City of Hope Medical Center and the Leukemia and Lymphoma Society will be hosting the 2nd 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.

Wednesday, December 14th 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.
Saturday, December 10th in Los Angeles, CA. The CLL Society will present at the conclusion of this meeting to assess interest in forming a CLL support group in the west side Los Angeles area. More details in the flyer. Access it here.
In the meantime….
Stay strong.

We are all in this together.

Brian Koffman, MD
11/21/16


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Tuesday, November 8, 2016

Do you live near Austin and have CLL?

Do you or someone you love have CLL and live near Austin Tx? 
If so you might want to catch this event. The CLL Society will be represented there by the leader of our support group at City Of Hope and he will be talking about getting a support and education group going in Austin. 
Click on this link for details:

Wednesday, November 16, 2016 
Registration: 5:30 PM
Start Time: 6:00 PM

WHERE:

The Westin Austin at The Domain 11301 Domain Dr.
Austin, TX 78758
If registration doesn't pick up, it might be cancelled and that would be a shame.




Monday, November 7, 2016

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 16th 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 18th 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 14th 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 10th in Metairie, LA. More details in the flyer. Access it here.
·      Thursday, November 15th in Independence, OH. More details in the flyer. Access it here.
·      Wednesday, November 16th 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

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Thursday, November 3, 2016

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

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Monday, October 31, 2016

EHA 2016: Dr. George Follow talks about the changing management of CLL (chronic lymphocytic leukemia)

It was great to meet a few of you in San Francisco yesterday. We’re looking forward to getting a CLL Support Group going there in 2017.

Today in the Conference Coverage section of the CLL Society website, we’ve posted an interview with Dr. George Follows where he talks about the changing management of CLL and what the patient’s role is to get the best possible care. Dr. Follows chaired the session I spoke at at the European Hematology Meeting in Copenhagen in June 2016. More than a 1000 hematologists were in attendance at our pre-meeting symposium.


Patient & Caregiver Support Meetings

NEW! Tuesday, November 1st 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! Terry Evans who does a great job facilitating our founding group in Orange County, CA will be there to help launch this one.

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. We look forward to seeing you there.

I will be speaking there and sure hope you can attend. If it anything like last year's forum, it will be super.

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 16th 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 18th 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.

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 10th in Metairie, LA. More details in the flyer. Access it here.
·      Thursday, November 15th in Independence, OH. More details in the flyer. Access it here.
·      Wednesday, November 16th 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
10/31/16

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