CLL patient on cancer treatment: It takes a team

I've been on many teams over the decades. Some have been very successful. Others, not so much. Now I find myself on a new team, my cancer treatment team.

Like the other teams I've been a part, as my cancer treatment team has grown and changed, I've learned that communication is essential.

How my team has changed during my CLL treatment
When I received my chronic lymphocytic leukemia (CLL) diagnoses in 2001, I had a small team: my primary care physician and my oncologist. They were members of the same medical group and worked together to administer my CLL treatment. To be honest, at the time I was overwhelmed. I trusted both physicians to do what was best for me. The team worked.

After a while, my primary care physician gave up her practice, and I was left with my oncologist. She took good care of me. By this time I had gained a significant amount of knowledge about CLL. My oncologist and I could converse. Mostly I asked intelligent questions and she gave intelligent answers.

However, after several different courses of treatment, my CLL became chemotherapy resistant. It was time to add to my team. I enrolled in a clinical trial at MD Anderson and gained new team members: Tappan Kadia, M.D., associate professor of Leukemia, William Wierda, M.D., Ph.D., professor of leukemia, my drug trial physician, Issa Khouri, M.D., professor medicine and internist in Stem Cell Transplantation and Cellular Therapy, and Blanche Anderson, my clinical trial coordinator. Of course, all the doctors brought their own team members with them. The team's complexity was multiplied many times over. But one thing was consistent no matter what team I was working with: I was always at the center.

Being the center of my cancer care team
Communication is essential. When my team was small, the lines of communication were simple. I asked, she answered.

Now that my team is much larger, communication is more difficult. My local oncologist is now in a back-up position. It is my responsibility to keep her in the loop, though she also talks to my MD Anderson oncologist and can look at my medical records through the myMDAnderson online portal. I visit with her on a regular basis. However, now she is now asking me questions, and I answer.

I have a more active role in my treatment. When I was first diagnosed, I took a back seat when it came to making decisions for my treatment. Now, I'm the team coordinator, and consequently, the main decision maker. After all, we are talking about my life. Now I know I must have all available information in order to make an informed decision. If I don't understand something, I need, no MUST ask questions until things are clear in my mind.

I must also make sure the other parts of my team are informed. From pharmacists to my family, they need to know what drugs I'm on,whether it's prescribed or over the counter, and what is normal for me. They also need to be able to communicate with the other parts of my team in case of an emergency.

It is rather staggering to count how many people I now have on my team. It can be a little overwhelming to be at the center of it all. My advice is to learn everything you can about your cancer. Take an active role in your treatment. Seek advice. Ask questions. Then make your decision. After all, it really is your life.

Chronic lymphocytic leukemia (CLL) is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our CLL Moon Shot.