Curling 123

[Curling123]

With TP53 showed 17p deletion in 14.5% of nuclei, 13q in 31% of nuclei, 11q deletion in 13.5% of nuclei. I don’t have any symptoms. With these results, will CLL doc push me to have treatment without symptoms? Leukocytes were at 3.2L. Want to be prepared for appointment with specialist and want to watch/wait. Anybody not have treatment right away with these results?

[Cllcanada Top Poster CURE Hero]

Highly unlike to treat with that low count... they will wait for the CLL to progress...

Those markers are simply an indication of the type of CLL you have, they never treat the numbers.

~chris 🇨🇦

[AussieNeil Partner Administrator]

It's important to appreciate that these prognostic factors are only some of the better recognised ones. How they interact together and with other more experimental prognostic factors you don't know, is still a developing science. This is all only just statistically relevant for populations with these prognostic markers, not individuals. There is considerable overlap between the different risk populations, which means that it is still the case currently, that the best course is to monitor us for our CLL tempo and only treat when symptoms indicate that that time has come.

Neil

[Curling123]

Thanks Chris and Neil. You have been a heap of support this past week after diagnosis. I have learned so much on this site. Even my doctor (GP) didn’t have a clue what these numbers meant. Hail to you both.

[Jm954 Administrator]

The advice is to watch and wait until treatment is required but your genetics means that you have high risk CLL and will almost certainly need treatment at some point.

There are a few early clinical trials with a targeted therapy treating high risk CLL patients who do not yet meet the criteria for treatment.

You don't say which country you are in but this paper describes a trial in Ohio, USA

bloodjournal.org/content/13...

and I think there is one in the planning stage in UK too.

Jackie

[Curling123]

Thank you JM. I am in Canada, Toronto.