Here’s another post from Pat’s CaringBridge journal:
One of the things I truly enjoy in my professional life is helping people understand the power of the Internet. Today, I tapped into some of that power myself.
From the comfort of my home, I attended a presentation titled CML: What Every Newly Diagnosed Patient Needs to Know with Dr. Jorge Cortes, known internationally for his expertise. Dr. Cortes is Chief of the CML Section of the Department of Leukemia at the University of Texas and MD Anderson Cancer Center in Houston. (MD Anderson is one of the mothers of all cancer centers and Banner recently announced an affiliation with them.)
The presentation was sponsored and paid for by Novatris, the company that makes Gleevec, and offered through the Leukemia and Lymphoma Society. Gleevec is a chemotherapy drug that targets a specific protein within cancer cells and stops the cancer cells from growing.
As mentioned earlier, CML is rare. Getting information is a challenge. Last week, in my first visit to the oncology practice in Phoenix, I got less than 15 minutes total with my doctor.
Today I got one hour with Dr. Cortes. The content was mainly clinical, followed by a Q&A session in which participants could ask questions online or by phone. 1,100 people joined in – from the US, Canada, Australia, Barbados, South Africa, India, Kenya and other countries. They included patients, caregivers, parents of patients and clinicians who care for CML patients.
Boy, did I learn a lot. CML used to be fatal for 50% of those who were diagnosed. Today, 90% of those with CML are still alive and doing well.
Dr. Cortes said this is very rare and you don’t see this much in other diseases.He provided a lot of information about CML treatment, including the options for patients who fail on Gleevec and new treatments that are in the pipeline and in clinical trials. He also touched on bone marrow transplants for treatment. He helped a father worried about the disease’s impact on his ability to have a child. He answered a clinician’s question about a move toward international standards for data reporting so clinicians could have common ground in studying the disease and developing treatments. He was great!
Personally, I appreciated getting some answers to questions about side effects from the chemotherapy. And, wow, I learned that some of the treatments for side effects, including such things as over the counter antacids, can negatively impact the absorption of the chemotherapy drug. He gave a cautious answer about whether or not a swine flu shot would be okay – it leaned more toward it being okay than not okay.
Bryan in Utah wanted to know if anything was being done to deal with the high cost of Gleevec. ($4K a month) Dr. Cortes said – “Wow, You just put me in the middle of the debate in Congress.” He then went into one of those nonresponsive responses that PR people like me are paid to craft for people who want to politely answer a question without giving a response.
Although she’s resting, she’s also blogging, and she gave me permission to reprint anything I wanted to that I thought would help others or shed light on the situation all Americans are in.
