Interview with Dr. Kipps on CLL(chronic lymphocytic leukemia) research from ASH 2015

Well, my bags are finally packed. Better be! I am at the airport ready to go to the European Hematology Association meeting in Copenhagen. 

Before the meeting starts on Thursday, I’ll be presenting some preliminary data from our Reader Poll at a symposium on Wednesday and attending a couple of other meetings with global Lymphoma groups. I have numerous other meetings and interviews set up and I’m hoping to get a little bit of time outside the convention center to at least see The Little Mermaid statue.

This week in the Conference Coverage section of the CLL Society website, we’ve posted a rambling interview with Dr. Thomas Kipps from ASH 2015. We discussed the latest data in the fight to defeat CLL using signal blockers, Venetoclax, ROR1 antibodies as well as the importance of more research. You can read a summary of our discussion and watch my interview with Dr. Kipps here. http://cllsociety.org/2016/06/dr-kipps-signal-blockers-venetoclax-ror1-antibodies-importance-research/  ‎

From time to time, we will make you aware of in-person meetings coming up for those of us affected by CLL. In June, they include:

June 16^th at 6 PM in Salt Lake City, UT: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here. http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9384957 

There is no charge to attend.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

http://cllsociety.org

ASH 2015: Dr. Stephan Stilgenbauer on clonal evolution in CLL (chronic lymphocytic leukemia) and update on many upcoming meetings

This week in the 2015 Conference Coverage section of the CLL Society website, we have posted an interview with Dr. Stephan Stilgenbauer as he discusses clonal evolution at the American Society of Hematology annual meeting in December 2015 in Orlando. You can see a summary and view his interview here.

Last week was very busy as I attended the CLL Research Consortium meeting from Wednesday through Friday and then took a redeye flight to Atlanta for a CLL educational meeting on Saturday. I spoke to the 30 attendees, and was thrilled that almost 90% of them already knew of the efforts we have been making with the CLL Society.

There are more meetings coming up for those of us affected by CLL:

March 12th at 7:30 AM in Scottsdale, AZ: The Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options will be hosted by the Lymphoma Research Foundation. You can find out more information and register here. There is no charge to attend.

March 17th at 6 PM in Chicago, IL: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here.  There is no charge to attend.

March 19th at 8 AM: The Southern California Blood Cancer Conference sponsored by the Leukemia and Lymphoma Society will be held at the Anaheim Marriott. You can find more information and register here. The CLL Society will have an exhibit table at the conference. We look forward to seeing you there. There is no charge to attend.

March 21st at 7 PM: First CLL Society Support and Education Network Patient Support and Education Meeting will be held at City of Hope: For those of you in the Los Angeles area, a new patient support and education group is forming. For more information, view the flyer. [http://www.cllsociety.org/docs/cohmarch2016.pdf] There is no charge to attend.

March 22nd at 6 PM in Atlanta, GA: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here. There is no charge to attend.

April 2nd at 7:30 AM: The Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options hosted by the Lymphoma Research Foundation will be held in Manhattan Beach, California. It will be held at the Manhattan Beach Marriott from 7:30 AM to 3:30 PM. You can find out more information and register here. The CLL Society will have an exhibit table at the conference. We look forward to seeing you there. There is no charge to attend.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD
Volunteer Medical Director of the CLL Society

http://cllsociety.org
http://bkoffman.blogspot.com

New Immune clinical trials and an explanation of cellular immunity in CLL ( chronic lymphocytic leukemia)

Friends, On the CLL Society website, we share two interesting articles: 1. An interview with Dr. John Gribben whom I interviewed at the CRC (CLL Research Consortium) Scientific Meeting in San Diego in April 2015. We discussed his approach to cellular immunity and T cell function in CLL. Please take a look here to see the interview. 2. A patient-friendly summary of three new Immune Antibody clinical trials from MD Anderson Cancer Center. These investigator-initiated trials are exploring how activation of the immune system may lead to killing of CLL cells. You can read more about these interesting trials here. This Fall has been incredibly busy so far, between traveling to Australia for the iwCLL meeting and an Australian patient support meeting, publishing our first issue of The CLL Tribune, and traveling to Brooklyn for the North American Educational Forum on Lymphoma hosted by the  Lymphoma Research Foundation. Now we're preparing to go to the American Society of Hematology Annual Meeting in Orlando, FL and putting together the next issue of The CLL Tribune, due out after ASH. If you haven't had a chance to peruse the first issue, you can access it here. If you have questions you like addressed in future newsletters, OR would be willing to answer 5 questions in our Reader Poll about the CLL Society website, OR would be interested in writing an article for future newsletters, please go to the Ask & Tell section. Our goal is to fulfill the unmet needs of the CLL community, so we always welcome your feedback and questions. SAVE THE DATE: If you live in the Los Angeles area, please consider attendinga post-ASH patient education forum and CLL Society LA support group launch in conjunction with City of Hope scheduled for Saturday, Dec. 12, 2015. A flyer with more details will be posted in the next week or 2. Finally, if you are reading this on blog and haven't already, please sign up here. Also, please forward this email to a fellow patient or caregiver who might benefit from knowing more about CLL. Another reason to make sure all the folks that might be helped sign on is that we will be posting a backlog of great lectures and interviews and articles on CLL over the next few months leading up to ASH and this alert is your best friend in knowing what new material we have posted. Stay strong. We are all this together Brian Koffman Volunteer Medical Director of the CLL Society http://cllsociety.org

ASH 2014: Professor Hillmen Discusses the Trials Acceleration Program for CLL (Chronic lymphocytic leukemia)

In this week's new postings on the CLL Society website on Monday, Wednesday, and Friday (May 11th,13th, and 15th), Professor Peter Hillmen from Leeds, England outlines the sorry state of traditional trial design and the problems it creates, or more accurately the problems that it doesn't solve, for us CLL patients. Professor Hillmen heads up CLL research in the United Kingdom.

There are so many new CLL drugs and so many more possible combinations that need to be explored. And that can take a long, long time. Sadly, too long for some of us.

But Dr. Hillmen offers a practical, agile solution that is now happening in the United Kingdom.

During the three-part interview, Professor Hillmen outlines a consolidated strategy called TAP (Trials Acceleration Programme) to get us the answers we need more quickly. Trial design, surrogate markers and how well they translate with novel therapies, and statistics are explained during the course of our interview done in December 2014 at the ASH (American Society of Hematology) Annual Meeting in San Francisco.

I understand if your eyes begin to glaze over when we start to discuss trial design and statistics, but just as it is important that we know about the drugs we are getting, it is equally important that we know about trials we are getting. Proper trial design and proper rendering of the results can change and save lives.

But I will let Professor Hillmen explain it here in a direct link. His excitement and pride are palpable. Please check the CL Society website again on Wednesday and Friday for the 2nd and third parts of our interview.

As we have discussed extensively in the issue of equipoise and crossovers, trial designs must reflect the needs of the patients.

Chance to do a CLL Interview in Costa Mesa and make a difference, give to charity, and get paid to boot

What follows is a letter I received about a chance to do an interview on CLL.

If you have CLL and live in OC, please consider it. I want big pharma to hear from us and not be drowned out by the NHL group, as much as I wish them every blessing. 

This is our chance to have the ear of the big company and maybe they will hear what we want. I know what I want to tell them, but I won't prejudice their study by sharing it at this time.

Plus for giving them an earful, you get paid $150  and I get $25 that I will be giving to charity. Win. Win. Win.

Here's the letter:

Dr.Koffman,

Medical Data Concepts, a well-established marketing research consulting firm working exclusively in the health care industry is conducting a study for a major  pharmaceutical company on the treatment of  Non-Hodgkin’s Lymphoma and Chronic Lymphocytic Leukemia. The topic of the study is patient information for CLL and NHL patients.

 

The purpose of this study is to gather information/opinions from the patient. Participants will not be asked to take any medication, nor is the intent to influence the prescribing of any particular product.  All responses will be treated confidentially, and will be reported in aggregate only.

 

In order to get direct feedback from patients we would like to enlist your help.  Over the next 3-4 weeks could you please ask the members of your CLL support group to call us to discuss participation in this market research study?

 

The interviews will be conducted in person at Assistance in Marketing in Costa Mesa on July 20.

 

Please have them call prior to these dates to answer some preliminary questions.

 

We have attached a letter you can give to the members explaining the project and providing a toll-free number for them to call for more details.

We appreciate your assistance with this important project. For every patient that completes the survey, you will receive $25.

 

The CLL patient will receive $150 for their participation.

 

If you have any questions regarding this project, please call us at 1-800-868-4206 and ask for Robin.

 

Thank you

 

Jill O’Reilly

Director of Research information Services

 

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