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If you have recently been diagnosed with CLL, you probably have questions. 


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Patient Power's Andrew Schorr interviews CLL experts at international workshop on CLL (iwCLL). 



Neil Kay (Mayo Clinic) on emerging diagnostic and treatment strategies for CLL 

Refining CLL Diagnostic and Treatment Approaches
Refining CLL Diagnostic and Treatment Approaches



Dr. Thomas Kipps (University of California, San Diego) on forthcoming monoclonal antibodies  

New Monoclonal Antibodies Adding Power to CLL Treatment
New Monoclonal Antibodies Adding Power to CLL Treatment



Dr. Jeff Sharman (Willamette Valley Cancer Institute and Research Center) on CLL's "inflection point"
Is CLL Treatment at a Turning Point?
Is CLL Treatment at a Turning Point?



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September 2013 



Did you know that September is blood cancer awareness month? Please help us bring awareness to blood cancers such as CLL. Below you will find a few ways to get involved. The CLL research community is doing its part this month. All of the key players in the CLL research community were in Cologne, Germany to report on the latest findings. Keep reading for insights and interviews from the meeting.  


CLL Docs Converge On Cologne, Germany


The CLL research community flocked to Cologne, Germany earlier this month for the 15th International Workshop on CLL (iwCLL). This meeting is  held every two years and is the largest meeting focused solely on CLL research. Presentations covered every aspect of CLL research from the biology and microenvironment of the disease to novel treatment approaches. CLL Global was well represented on the agenda; many of our grant recipients and Alliance members presented their latest research.


The meeting reinforced the message that we are in a truly exciting time for CLL therapeutic research and that we are fortunate that a slew of treatment options are in development. The data presented on ibrutinib and ABT-199 (also known as GDC-0199) reinforced our enthusiasm for these agents. The presentations on cellular therapy showed that this type of treatment can be safe and effective. A number of clinical trials are in progress or in development to further test this treatment modality.


With all of the buzz about new treatment options, the current gold standard of fludarabine, cyclophosphamide and rituximab (FCR) was not forgotten. One of the late-breaking presentations featured long-term remission data on the FCR regimen. Both the German CLL Study Group and MD Anderson group both showed data from independent studies on those patients that had long-term progression free survival after receiving FCR. Each group made a similar observation: patients in the IGHV-mutated subgroup have longer-term progression free survival. MD Anderson data showed 60% of IGHV-mutated patients to be progression free at nine years. The German data showed more than 50% of IGHV-mutated patients to be progression free at eight years.


We have known for a while that the mutation status of the IGHV gene is an important prognostic factor. IGHV genes are found in the DNA of lymphocytes and are responsible for producing antibodies. A mutated IGHV gene is a good prognostic factor. The more mutated IGHV genes are, the more mature the genes are, making them more capable of protecting the body. The FCR data presented at iwCLL further confirms IGHV mutation status as a key prognostic factor. However, we know that FCR is not the ideal regimen for all patients, particularly patients with 17pdel. Therefore, work continues to find effective treatments for all subgroups.


To the left, you will find first-hand accounts from participants at the meeting. We have partnered with our friends at Patient Power to bring you video interviews direct from iwCLL. Stay tuned for more videos to come.



Helpful Hints to Raise Blood Cancer Awareness


Each September, the blood cancer community unites to enhance public understanding of the causes of and treatment options for blood cancers. Another goal is to ensure federal funding for blood cancer research.  


In 2010, the US Congress designated September as National Blood Cancer Awareness Month. CLL Global Research Foundation supports the efforts of many individuals and organizations to raise overall awareness of blood cancers. Unfortunately, too many people do not know about CLL until they or a loved one are diagnosed. Please join us in educating others about CLL and blood cancers in general. Here are a few ways to help:


Educate: Use this time to learn more about CLL and then help educate others. Visit www.cllglobal.org for disease-specific information


Share your story: Whether you use Facebook, Twitter, Instagram or other social media, let your friends and neighbors know that this month is important to you. Or simply post or like the CLL Global Facebook page.


Donate: Consider making a donation this month to CLL Global to increase our research efforts.


Participate: Look for events in your area that are commemorating blood cancer awareness month. Consider writing your local leaders to proclaim September as Blood Cancer Awareness Month and to proclaim a specific day as CLL day. Time is ticking for September 2013 but start now so CLL can be recognized in 2014.

We look forward to helping raise awareness of CLL throughout September and each day of the year. 


Thanks for joining us for another issue of Tidbits. Stay tuned for more to come.


CLL Global Research Foundation