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Being Our Own Advocate and Staying Alive with CLL (chronic lymphocytic leukemia)

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

In April 2015, during the CRC Patient Empowerment and Education meeting, I had the opportunity to share what I have learned during my 10-year journey with CLL.

Take Away Points:

  • Being our own advocate in the management of our chronic lymphocytic leukemia (CLL) has a survival advantage.
  • We need to put our CLL dream team together.
  • Hire or become your own CLL expert.
  • Advocacy has many pieces and can be outsourced.
    • ACT
    • BE AWARE
  • There is always risk, even with doing nothing.
  • We have to make decisions with imperfect knowledge and contradictory advice.
  • Under-react
  • Helping others improves survival odds. We are all in this together.

Dr. Brian Koffman on Being Our Own Advocate and Staying Alive with CLL

I was privileged to be the third speaker at the CLL Research Consortium (CRC) Patient Empowerment and Education Conference held in San Diego, CA, in April 2015.  If you haven’t heard the first CRC lectures from Dr. Kipps with his remarkable overview of CLL and on the work that the CRC, please click here and from Dr. Neil Kay on prognostics and the early management of CLL here.

I spent roughly the first half of my talk sharing my ten-year CLL history in a mere 10 minutes.

In the last half, I try to jam in many of the practical life lessons about being my own advocate, plus survival strategies that I have learned during my first decade having to deal with chronic lymphocytic leukemia.

Since we are all in this together, it is critical that we share our experiences and what wisdom we have learned from our trials and our triumphs. That way we can all learn and work together to beat this beast

After you listen here to my time at the podium, please let me know what you think.

Stay in touch

Stay strong.

We are all in this together

Brian Koffman 7/23/15