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.

You can view my interview here. http://cllsociety.org/2016/10/eha-2016-changing-mgmt-cll/

Patient & Caregiver Support Meetings

NEW! 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! 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.

You can access the flyer here http://www.cllsociety.org/docs/2016%20COH%20Post-ASH%20Patient%20Forum%20Final.pdf and pre-registration is requested. https://2016cllforum.questionpro.com/

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 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.

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

10/31/16

http://cllsociety.org

See you in San Francisco Oct 29, 2016 to help launch a bay area CLL Society Support and Education Group

I am a big believer in the importance of CLL specific support and education groups, run for and by patients and caregivers.

As a result the nonprofit 501c3 CLL Society, has been active in setting up or supporting several such groups in 2016 and laying the framework for many more in 2017.

We have done this by using amazing team consisting of well experienced and trained members of our local support groups, all patients themselves.

I have happily handed off this important effort to my fellow CLLers, but I did reserve the meeting this Saturday, Oct 29, 2016 near the San Francisco airport to attend myself.

If you want to hear why I believe being a member of the right support group has been and can be both a life saving and life affirming move, please come by and say hello

Details are below. Click of the photo to zoom in. I will be speaking on support groups immediately following the end of the B-Connected Live Event. The B -Connected Events are unbranded programs and present the basics about CLL without promoting any particular drugs and also share the patient's and /or caregiver's perspective.

Hope to see you there. I will be hanging around after if you want to chat.

Stay strong

We are all in this together

Brian

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It's all too much. Travels and travails of this leukemia patient, advocate and teacher

The Spirit of Haida Gwaii

by Bill Ried

I am so tired.

It’s all good, but it all too much.

I am returning home from a very successful and delightful few days in Bethesda where I had the privilege to meet the hematology department and address the fellows and faculty about what patients want in their care when I was invited to visit the National Institute of Health.

As any patients who is fortunate enough to get care at the NIH will tell you, the security to get onto the beautiful campus is tight- think TSA at the airport with sniffing dogs and x-rays and metal detectors for any car and all the passengers.

But once you are in- what an amazing group of physician/scientists- brilliant caring men and women doing bench science, clinical research and direct patient care.

I was so lucky to have the opportunity to share my own story and what we have learned from surveying my fellow patients.

We are looking for ways to partner on research in the future.

Before that I had spoken to hundreds of fellow primary care providers on gout on Saturday and geriatric anemia on Friday for certified medical education (CME). My co-presenters are wonderful educators and clinicians. It was great chemistry on stage. We worked hard to make our education relevant and real. The result was that the audience was engaged and complementary. It was great fun. Show time.

One of the best parts of doing this CME again was being back with the same wonderful team that been putting on similar meetings for a decade. Last year the prospect of this happening was bleak. Due to some challenging external forces, it looked as if the end was nigh. However, through some creative and generous partnering, we are all again providing high quality accredited medical education. As one of my long time friends in the med ed world, said: The band was back together.

Some interesting facts:

• 1.    The guy who does my sound also does the Trump and Clinton rallies and when he is not making me or Donald or Hillary sound good on stage doing CME, he is also one of the soundman for the Rolling Stones.
• 2.     On my way home from Portugal a few weeks ago, I was 3 feet away from the one and only peripatetic Mick Jagger as we were both at the same customs desk at the same time coming back into the States. He looked fabulous for a 75-year-old man about to father his 10^th child. No entourage. Just one security officer.  Sir Mick himself.

Not one to while away my time, I also arranged several in person meetings including one with a wonderful possible development person for the CLL Society, another with one of our CLL Society directors, and another with the hardworking Betsy Dennison who handles our website and grants where we made our end of the year plans.

I managed to schedule a last second telephone interview on CLL and referred two other patients for interviews that were also completed.

I also serve as a director of another nonprofit company. That one accredits CME assuring that it is fair and balanced. In that capacity, I met with the chairman of our board who was attending the same conference where I spoke. We used the opportunity of being together to hold a 90-minute tête-à-tête to negotiate our ongoing mutually beneficial relationship with the two principals of med ed company that was staging the Bethesda CME meeting.

I met the next day with the same folks to discuss how the CLL Society might be looped in on their future educational programs for community oncologists on CLL. We have some great plans if we can pull together the necessary resources.

I managed to squeeze in a quick visit to the Capitol mall to see the marvelously mythical massive Bill Reid sculpture in front of the Canadian Embassy and then walked the few feet down Pennsylvania Ave. to be shocked and astonished at the Newseum.  Three hours isn’t nearly enough time for a visit.

Don’t miss either the Newseum or the Bill Reid.

In between, daily I signed into my electronic medical records, reviewed labs, put in orders and refilled prescriptions and also talked to and sent notes to several of my family practice patients back in California.

It was all wonderful- seeing old friends and colleagues and meeting new smart and caring folks with whom we might be able to forge alliances to improve the lot of CLL patients.

Great stuff.

But it is all too much.

I need a long nap.

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CLL patient and Caregiver Meeting in Denver Oct 25 to Help Jumpstart a Support group

Do you live in or near Denver and have CLL or know someone who does? There is a meeting scheduled that might be a great help on Oct 25. Bruce Wright will be there and he is an incredible spokesperson on behalf of CLL Support groups.Here is the link:
http://cllsociety.org/docs/BCO_LPOP_CLL_EventFlyer_DenverCO_082216.pdf

I am sharing this as the registration has been low and the meeting might be canceled.

EHA 2016: Professor Hallek on the unmet needs in CLL (chronic lymphocytic leukemia)

Today in the 2016 Conference Coverage section of the CLL Society website, we’ve posted an interview with Dr. Michael Hallek about the unmet needs in CLL as well as his approach to addressing them through research. You can view my interview here. http://cllsociety.org/2016/10/eha-2016-hallek-unmet-needs-cll/

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. We appreciate the input we’ve received so far and would love to receive more. Thank you. You can access it here. https://q32016ask.questionpro.com/

Patient & Caregiver Support Meetings

Monday, October 17^th at 7:00 PM at the City of Hope in Duarte, CA. See here for more information. http://cllsociety.org/event/city-hope-cll-support-group/2016-10-17/ I will be speaking there.

NEW! 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

NEW! 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!

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. Dinner will be served and there is no charge to attend. You can find out more information and register here. http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9301553

Heads Up! The CLL Society has become aware of a series of unbranded (no specific drug discussion) patient education meetings coming up in October and 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 4 confirmed meetings are:

·      Tuesday, October 25^th in Golden, CO. More details in the flyer. Access it here. http://cllsociety.org/docs/BCO_LPOP_CLL_EventFlyer_DenverCO_082216.pdf

·      Saturday, October 29^th in San Francisco, CA. More details in the flyer. Access it here. http://cllsociety.org/docs/EventFlyer_SanFranCA.pdf I will be at this one

·      Thursday, November 10^th in Metairie, LA. More details in the flyer. Access it here. http://cllsociety.org/docs/BCO_LPOP_CLL_EventFlyer_NewOrleans_082416.pdf

·      Wednesday, November 16^th in Austin, TX. More details in the flyer. Access it here. http://cllsociety.org/docs/BCO_LPOP_CLL_EventFlyer_AustinTX_082416.pdf

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

10/10/16

http://cllsociety.org

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

The News from the CLL Tribune, Caregiver Musical Video by Derek Caine, and CLL related Meetings

Last week we published the latest issue of The CLL Tribune. We’re so grateful to the patients, and physicians and others who share their experience and expertise to enrich our CLL Society community. If you would like to share your story, or have ideas for future articles, please reach out to us. http://cllsociety.org/contact-us/

This is really a great collection of articles written by fellow patients and doctors. Please take a look here.

We’d like to call your attention to a video that Derek Caine has composed to honor and call attention to the importance of our CLL caregivers. You can check that out here. http://cllsociety.org/2016/10/derek-caine-cll-caregivers/

This week we would again like to highlight the content from our quarterly newsletter and also request that you take 2 minutes to answer our latest Reader Poll to give us feedback about how we’re doing and what topics you would like to see covered in the future. You can access it here. https://q32016ask.questionpro.com/

Did you participate in the Q1 2016 Reader Poll in The CLL Tribune? That poll focused on the factors that influence you when making decisions about your treatment for CLL. We felt that data was so important that we submitted an abstract for consideration to the American Society of Hematology. On Thursday, we heard that our abstract was accepted. While that is really exciting for us, what’s even more exciting is that the largest global hematology society felt it was important to hear the patient voice. This data is embargoed until after the meeting in December, but we will be sharing it after that. THANK YOU FOR PARTICIPATING! Your voice is important.

Please enjoy the articles and interviews from the Q3 2016 issue of The CLL Tribune:

·      Reading/viewing an interview with Dr. John Pagel about the CLL Education session at ASCO 2016 in Conference Coverage

·      Read answers to reader questions by Dr. Rick Furman in Ask the Doctor

·      Learn about bone marrow biopsies by Dr. Bill Wierda and read a patient-friendly explanation of the report in The Basics Section

·      In Beyond the Basics, learn more about the FISH test, what the results mean and how physicians use it to make treatment recommendations

·      Learn new facts about CLL in the Did You Know section

·      View some data from our most recent Reader Poll and share with us your feedback about the CLL Society and topics you think should be added to the website in our Ask & Tell section

·      In Living Well with CLL, you can read about:

o   Reflections on Risking a Safari in Kenya and Tips for Safe Travel to Exotic Places when Fighting CLL

o   Standing Up For Your Health

o   My Treatment-Naïve Ibrutinib Journey – The First 30 days

o   Could a CLL Clinical Trial Save My Life? What Were the Risks?

o   Connect in Person: Join A Local CLL Support Group!

Upcoming Patient Support Meetings

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

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

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

Tuesday, October 18^th at 6:30 PM at the Levine Cancer Center in Charlotte, NC – a new CLL Patient & Caregiver Support and Education Group will be starting. 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:

·      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.

·      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.

Heads Up! The CLL Society has become aware of a series of unbranded (no specific drug discussion) patient education meetings coming up in October and 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 7 confirmed meetings are:

·      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. I’ll be there. 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. I’ll be there too. Access it here.

·      Thursday, November 10^th in Metairie, LA. 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

10/3/16

http://cllsociety.org