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October 31st, 2014

If the plays aren’t working, re-adjust the game plan

Just over a decade ago, a diagnosis of the blood cancer chronic myeloid leukemia (CML), a disease in which the body produces cancerous white blood cells, was considered a death sentence with only a few years of expected survival. But today, an estimated 28,000 Americans are currently living with this disease – a direct result of major advances in treatment options for the disease.

To gain attention for those impacted by CML, September 22nd has been designated National CML Awareness Day in the United States. The date, September 22nd (9/22), was symbolically chosen to represent the chromosomal abnormality known as the Philadelphia chromosome — a rearrangement in the genetic material on chromosomes 9 and 22 — which is present in 95 percent of patients living with this disease. Greg Stephens, Executive Director of The National CML Society, explains:

“CML is responsible for 10 to 15 percent of all adult cases of leukemia and, in 2011 alone, there were about 5,150 newly diagnosed people in the U.S. On this day, Americans are encouraged to honor those affected by the disease and to recognize the advancements made in the treatment of CML.”

Over the past several decades, there has been significant progress made in understanding how CML works, which has led to the development of treatment options designed to act against the underlying cause of this disease, an abnormal gene called Bcr-Abl which is produced by the Philadelphia chromosome. These treatments, known as Bcr-Abl inhibitors, block the ability of Bcr-Abl to send signals that drive production of the leukemic blood cells.

As a result, CML is now a disease that may be managed in many patients for a long time by working with a doctor to develop the best possible treatment plan. The NBA’s All-Time Leading Scorer and CML patient advocate, Kareem Abdul-Jabbar, knows firsthand:

“As someone living with CML, I know I need to play an active role in managing my disease, working closely with my doctor to understand my treatment plan, taking my medications as prescribed, and establishing clear treatment goals. Managing CML is an ongoing process and it’s important to track your progress. If you’re not meeting your treatment goals, there are things you and your doctor can do, which can help you get back on track.”

But CML is still a rare disease, and many patients are learning to cope with the new reality that they are, or will become, long-term survivors. As a result, connecting with others impacted by the disease is becoming increasingly important among the CML community. Abdul-Jabbar continues:

“For me, another important component of my disease management plan is connecting with other CML patients and their loved ones as I find inspiration and emotional support in sharing my story and hearing from others.”

With the limited number of people living with CML, face-to-face interactions may be difficult as patients and caregivers may not be located near each other geographically. As such, social networking in the CML community is something that patients, and caregivers alike, are extremely passionate about. To help CML patients and caregivers connect, Novartis Oncology, along with Abdul-Jabbar and The National CML Society, will be hosting an event aimed at educating and supporting those impacted by CML. To be held on 9/22, this free webcast event will provide CML patients and caregivers the opportunity to ask their most pressing questions about living with CML and to participate in interactive sessions, including in-studio cooking and exercise demonstrations.

For more information on CML and to register for this event, visit the Novartis-sponsored social networking site www.cmlearth.com. For those CML patients and caregivers who are unable to join on 9/22, please check back on CML Earth following the event for relevant content and to view the webcasts.

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