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March 2015

Greetings Friends!

CLL Global would like to wish everyone a happy spring. For many of us,  it has been a long winter and the extra daylight of the new season is a welcome reprieve. We have been busy this month planning our next Alliance meeting to be held on September 4-5, 2015 just outside of Sydney, Australia. Also in this month's newsletter is an update from one of our Alliance grantees, Dr. Zeev Estrov, about his research on improving the quality of life for CLL patients.  And don't forget about the Patient Power Town Meeting in Tempe, AZ, on March 29, 2015. For those of you not close to AZ you can join virtually (details below).


Increasing Quality of Life For CLL Patients 


Chronic lymphocytic leukemia (CLL) has a profound effect on patients' quality of life because of a number of disease-related symptoms among which fatigue is perhaps the best recognized. Currently available symptomatic treatments are only partially effective. Therefore, for patients in whom CLL-related symptoms are uncontrollable, anti-leukemic therapy is often administered.


Realizing that most disease related symptoms are caused by hormone-like substances, termed cytokines, produced at high levels by CLL cells, Dr. Estrov, a Professor of Leukemia at MD Anderson Cancer Center and a CLL Global Alliance funded researcher, was looking for a drug that would efficiently reduce the levels of those cytokines.


Most CLL cells reside in the bone marrow and lymph nodes where local factors stimulate the proliferation and increase the life span of CLL cells. While investigating these mechanisms in his laboratory, Dr. Estrov and his team discovered that stimulation of CLL cells results in activation of a factor termed Janus kinase (JAK)-2 and the drug ruxolitinib (Jakafi) inhibits this effect. The JAK2 inhibitor ruxolitinib has been used successfully in myelofibrosis, a disease in which JAK2 is activated and induces the production of several cytokines, a significant number of which are produced by CLL cells.


To test whether ruxolitinib would alleviate the symptoms of patients with CLL that otherwise do not require anti-leukemia therapy, Dr. Estrov initiated a small clinical trial. With the support of Incyte Corporation, the drug's manufacturer, ruxolitinib has been administered to CLL patients. In the vast majority of the 30 patients that were enrolled onto the study thus far, ruxolitinib significantly reduced CLL-related symptoms and improved the patients' quality of life.


Below are comments of some of Dr. Estrov's patients or their close family members:

  • "I just want to thank you for giving me my life back.  This medicine is incredible!!!!  Thank you, thank you for getting me in this trial.  I just can't tell you enough how GREAT I feel!  My Crohn's is even better."
  • "He is feeling VERY well, I am happy to report. He walked with me at the mall twice this week--he has not had the energy to do that since early July!"
  • "I feel better than I have in years. As of last week I have been able to add walking back to my daily routine.  I have started walking 4-5 miles per day."
  • "I don't feel as good as I did before I had CLL, but I do feel much better than I used to."


Living Well with CLL: A Town Meeting for Patients, Their Families and Care Partners


Our partners at Patient Power, in conjunction with Banner MD Anderson Cancer Center, are hosting a Town Meeting in Tempe, AZ on Sunday March 29, 2015.The event is free and will be held at the Phoenix Marriott Tempe at the Butes. Don't live close to Tempe? Have no fear. A free video conferencing service is available with host and patient advocate Carol Preston on the scene as your reporter. The event is free but registration is required. (http://www.patientpower.info/event/cll-phoenix-2015/)



A Night of Wine and Art to Support CLL Global Research Foundation


On Saturday, March 28, 2015, local philanthropist and CLL Global supporter Mr. Michael Doustan and his wife, Joy, are hosting an art auction and fundraiser to benefit CLL Global Research Foundation. Local Houston artist Leanne Domangue is creating 10 custom pieces for the event, with 50% of the proceeds benefiting CLL Global.

If you have a special talent or skill and would like to support CLL Global, we would be happy to work with you in putting your own fundraising event together.


As always, we are grateful for your continued support of CLL Global and our mission to abolish CLL. Together we are accelerating the pace of CLL research and moving one step closer to a cure.


CLL Global Research Foundation