ALERT: avoid this post if you are the kind of person who does not want to know about statistics and odds of disease progression. This is deliberately an unlocked post so do not share your own results in the comments section unless you are happy for them to be shown in google search results. Feel free to Direct Message me if you want to discuss this post more privately.
Although it seems it’s not in routine use yet, and doesn’t necessarily influence treatment decisions I share a link below to a prognostic index for CLL. You can take the test and identify which risk group it places you in.
A large study of thousands of patients from before the use of more modern specific therapies was used to create this index. It came up with a clear way of categorizing patients into very high, high, intermediate, and low risk groups. This has been confirmed to be useful twice since in different studies.
There is an online calculator that can be used to identify which risk group you fall into. This risk group influences the length of time to when you need treatment and survival rates.
Be wary of the survival rates since they may well be too pessimistic in the modern era. All the signs suggest that these results may well be much better in the era of FCR, Ibritunib, Venetoclax, other agents, and stem cell transplants where needed. And, whilst FCR doesn’t seem to work for high risk patients, other treatments do often work very well, so this survival gap may well narrow or even disappear in the future. It is vital to remember when assessing data on survival that by definition it is old data on the day it is published, especially in a period of time when new better treatments are being released all the time and we are getting better at knowing when and how to treat our disease in all its manifestations.
The risk stratification should still help predict who is most likely to need treatment soonest. But don’t be overly alarmed if you are high risk or overly reassured if you are low risk. Some high risk patients will still not need treatment for years and some low risk patients may need treatment quickly.
There are five critical variables, the data suggests nothing else matters much in predicting prognosis:
•Age (with over 65 being slightly worse)
•Clinical stage (with advancing stage making the prognosis slightly worse)
•serum B2 microglobulin (with levels over 3.5 having a significantly worse prognosis)
•Mutatation status with unmutated status having a significantly worse prognosis
•TP53 mutation or /17p deletion with either or both having a very significantly worse prognosis.
One of the variables I don’t know the result for me personally, and am not sure if I’ve been tested for or not (serum B2 micro-globulin). Is that a test others have had routinely?
I ran the test twice once assuming low levels of my missing result, and once high. Because of my other markers this single item would push me personally either into the high or intermediate risk group (it might not be so important for you). This did make me want to check with my team if that test has been done on me already.
There are links to the original papers. On the MD Calc page, perhaps the most interesting of which is the Danish population study which was done after the advent of FCR and shows reasonably good survival rates even for the very highest risk patients.
Take the test:
Danish study: bloodjournal.org/content/bl...