By Andrew Schorr
In a remarkable demonstration of progress in cancer treatment, people around the United States who are living with a previously fatal form of leukemia will join together this month to focus on enhancing the quality of their lives in the decades ahead. Patients and families impacted by chronic myeloid leukemia (CML) will participate in a six-hour online virtual patient summit focused on "Living Well with CML."
The event will open and close with presentations from two leading CML patient advocates: Greg Stephens, the executive director of the National CML Society, and Kareem Abdul-Jabbar, the NBA's all-time leading scorer, actor, author, ambassador and patient advocate who was diagnosed with CML in 2008.
When he made his diagnosis public, Abdul-Jabbar told ABC News that "I heard the world 'leukemia,' and I thought this was definitely a death sentence." He added that his prognosis was good, and said, "If I can do this as I'm told to do it, I can manage this."
He now serves as a spokesperson for Novartis Oncology and told Patient Power in a telephone interview on Sept. 13, 2012 that he does this work to "do his share" to help others, and to "pay it forward." He added, "Knowledge is power," and said that patients who better understand disease management can "prolong and better your life."
Some 5,000 people are newly diagnosed with CML in the United States each year according to the National Cancer Institute. One of the four main types of leukemia, CML is an acquired cancer of the blood caused by development of an abnormal chromosome that causes the creation of too many white blood cells.
The number of people living with CML is growing significantly due to breakthrough treatment methods that have changed this leukemia from a nearly always terminal condition into a manageable chronic disease for most patients.
Prior to 2001, traditional therapies such as chemotherapy were used, and the average life expectancy for CML patients after diagnosis was three to five years.
A new form of targeted drug therapy, which stops the production of leukemic cells, became the fastest drug ever approved by the FDA in 2001. Three additional such drugs have since been approved. These drugs keep the disease under control and are taken for the patient's lifetime. As reported by Smithsonian Magazine, the success in CML treatment has been a "triumph in the war against cancer."
Author Terence Monmaney called the FDA approval of the first targeted therapy for CML, Gleevec (imatinib) "a defining moment." He noted that "the then director of the National Cancer Institute ... described it as 'a picture of the future of cancer treatment'."
Most CML patients today can expect to live a normal lifespan as long as they have access to treatment and remain adherent to treatment. Those who do not respond to drug therapy may be treated by a bone marrow transplant, the only potentially curative treatment for CML at this time.
The national CML patient event will take place on September 22, 2012, a day observed as CML Awareness Day in the United States. The date, 9/22, represents the genetic change of chromosomes 9 and 22 that causes people to develop CML.
Awareness activities enable those impacted by CML to connect with experts and each other to join in solidarity as a community dealing with cancer in new ways that are not found in more traditional cancer support services.
More information is available from the National CML Society website at http://nationalcmlsociety.org/virtual-patient-summit/
Additionally, patient groups around the world are participating in International CML Awareness Day, more evidence of the growing numbers of people who are now living with this rare cancer and supporting each other.
The global CML Advocates Network has a directory of support organizations around the world as well as information on specific activities and can be found at http://www.cmladvocates.net/
"These events are critical for the growing numbers of patients living with CML," said Executive Director Greg Stephens of The National CML Society. "Since CML is rare, it can be difficult for patients to get this type of information locally. The use of targeted drug therapy for cancer is new, and the virtual seminar enables experts to provide information directly to patients, and those who care about them, in the comfort of their homes or wherever they choose to participate."
I have been fortunate to have had the opportunity to interview many of the top physicians who have dedicated their lives to changing the course of the lives of people diagnosed with CML, including Dr. Brian Druker from Oregon Health and Science University. Druker was one of the key drivers of the development of targeted therapy.
You can find interviews with him, and other leading experts, including patients, in the CML Health Education Center on the Patient Power website at http://www.patientpower.info/health-topic/chronic-myelogenous-leukemia/
About the author:
Andrew Schorr is a medical journalist, cancer survivor and founder of Patient Power, a one-of-a-kind company bringing in-depth information to patients with cancer and chronic illness. Audio and video programs, plus transcripts, help patients make informed decisions to support their health in partnership with their medical team.
Patient Power is at www.PatientPower.info and on Facebook, YouTube and Twitter. Schorr is also the author of "The Web Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis" found at www.websavvypatient.com/
A Triumph In The War Against Cancer, Smithsonian Magazine, Published May 2011, Accessed online on 09/19/12 at
National CML Society, Virtual Patient Summit, Accessed online on 9/19/12 at
CML Advocates Network, Accessed online on 9/19/12 at
CML Health Education Center, Patient Power, Accessed online on 9/19/12 at http://www.patientpower.info/health-topic/chronic-myelogenous-leukemia
National Cancer Institute, SEER Stat Fact Sheets: Chronic Myeloid Leukemia, Accessed online on 9/19/12 at
Gambacorti-Passerini C, Multicenter independent assessment of outcomes in chronic myeloid leukemia patients treated with imatinib. Journal of the National Cancer Institute, 2011;103(7):553-561. Acessed online on 9/19/12 at
ABC News, NBA Great Kareem Abdul-Jabbar Diagnosed With Leukemia, Published Nov. 10, 2009, Accessed online on 9/19/12 at
Reviewed September 20, 2012
by Michele Blacksberg RN
Edited by Jody Smith
By Andrew Schorr