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Alert Number 121
Date: August 17, 2024
Are CLL patients better off today than they were 6 years ago? Have the survival statistics improved, especially for the poor prognosis patients? The answer to both questions is a resounding Yes! But …
You are right, there is a catch. The catch is that unless you and your oncologist are aware of the latest therapy options available to you, as well as the importance of making smart therapy choices based on solid prognostic information, you might as well be back in the pre-Rituxan, pre-Campath era. We review a 1999 CLL clinical case history from the Moffitt Center, in the light of our present day understanding of this disease. It is amazing how much has changed in the last 6 years.
We call our latest article Death by Conventional Wisdom. It describes the tragic slide of a 45 year old patient from diagnosis through ineffective therapy, bone marrow transplant, and eventual death, all in less than 2 years. And yet, every one of the decisions made was correct, seen from the perspective of 1999 conventional wisdom. I would be willing to bet that had that patient been diagnosed today, had he had access to state-of-the-art expert help, the story would be very different indeed. Want to know how your oncologist stacks up, compared to this 1999 expert? Judge for yourself. Compare the advice this unfortunate patient got in 1999, with the treatment and care you are getting today.
A front page article in the New York Times a couple of days ago identified the fear and frustration patients feel with having to make complex medical decisions. I sympathize. I too dealt with that fear and frustration when my husband was diagnosed with CLL more than 4 years ago. I forced myself to come up the learning curve to help him fight this disease. The alternative was to leave him to the tender mercies of the 15 minute consultation, something I was not willing to do. Our local oncologist then gave us a prognosis of 2-3 years when PC was first diagnosed. Since then we have found out he is a Bucket C kid, a high-risk patient. Nevertheless, four years later and counting, he has not had to use chemotherapy yet, he is in better shape today than he was back in 2024. He is going to die of ripe old age someday, if I have anything to do with it.
Who is in charge of your healthcare? You are. But you are not alone. And things are a lot better today than they were just a few years ago.
Be well,
Chaya
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