Take Away Points:
- There are significant variations in how long patients with chronic lymphocytic leukemia (CLL) live.
- A small, but significant subset of us have the same life expectancy of our matched cohort.
- Statistics help predict prognosis for groups, not individuals.
- Knowing our prognostic factors can help us plan our strategies.
- All data is looking backward, and the survival data for CLL continues to improve.
- CLL Topics, despite the lack of recent updates, remains an excellent resource for basic CLL Information for topics such as prognostic indicators (markers) and more.
Hematology in general and CLL specifically are full of jargon and acronyms that can be both overwhelming and daunting. With time and experience, you’ll become familiar with the terminology and acronyms. We will try to explain each medical term the first time it appears in an article, but we will use the true terminology so that you gain comfort and familiarity with the medical terms that you will see in your lab reports and in medical articles. We have also provided a glossary and a list of abbreviations and acronyms for your reference.
Chaya Venkat, my dear friend and a true leader in CLL patient education, explains so well what was known in January of 2010 about prognostic factors in this classic online article that there is absolutely no point in retelling the story. Simply follow this link and enjoy her clear and helpful writing style.
If you want a deeper understanding of the Kaplan Meier Curves that are so ubiquitous in cancer literature, this NIH (National Institute of Health) article may help.
Finally, it should be mandatory that anyone of us who reads any statistical analysis, that we first read this short classic by the late great science writer, Steven Jay Gould: The Median isn’t the Message. There are many spots one can find this chestnut of the web, but this link is my favorite. This is mandatory reading!
The large CLL8 study published in Blood (already referenced in my article on Individualized Therapy) confirms Chaya’s good news to those in her A bucket, that they are “…very low-risk, harboring del13q14 only, whose 10-year survival (69.3%) did not significantly differ from a matched general population.”
What this large study is saying loudly and clearly is that a subset of us with CLL will have the same life expectancy as those without CLL. That is very good news.
An important addition to Chaya’s statistics: survival data for CLL continues to improve into the second decade of the 21st century. In others words, as I have said many times: There is never a good time to be diagnosed with CLL, but there never has been a better time to be diagnosed with CLL.
Chaya has earned the right to retire, and since her retirement there has been a host of new prognostic and predictive factors discovered that are discussed in this article and new therapies that perhaps render some predictive factors less critical. We will explain all these and the important differences between predictive and prognostic indicators, but for now let me whet the appetite of those who want the raw data with this NEJM (New England Journal of Medicine) article.
Brian Koffman 2/26/15