Results back from the FISH

[yoniboi]

Hello there everyone,

Got the results back from the test today and I'm chromosome 12 deleted (good prognosis she told me) and while my spleen and liver have continued to grow (inevitably) my platelets have recovered from 95 to 120, thus making treatment unnecessary for now (yippee).

Funny thing is I've heard of deletions on chromosome 17, 13 etc but never 12 LOL.

Anyway, that gives me some breathing space to save up for when I do, eventually, need treatment... as being self employed that was my biggest worry (more so even than the disease progression etc)

Aside from CLL it's rained here as well this week, for the first time in 6 months, so we can all breath a little sigh of relief as the wild fires in the north east of Spain and in Portugal are terrible right now... that and the fact all the reservoirs are empty. Fingers crossed it rains a lot more from now till Christmas.

Regards to you all and keep well.

John

[Murzik]

Are u sure that u have Chromospme 12 deletion. Usually it is Trisomy 12, meaning extra chromosome 12. Best of all, G.

[yoniboi in reply to Murzik]

You could well be right. The doc just said chromosome 12... and I always hear about deletions so I put 2 and 2 together to get 6.

My bad.

[Glees in reply to yoniboi]

My husband has trisomy 12 which we are told is a good prognosis marker. Unfortunately, he also has 11q & 13q deletions which altogether are not a happy prognosis. Glad you only have the one and it is not bad! Relax and enjoy your rain!

[kohelet]

I've read that Trisomy 12 (which I have) is bad. Answer from Dr. Leclair:

Lots of chromosomes can have changes in them. Sometimes those changes happen as the cell matures and becomes functional, while other times they are mistakes in the building of the DNA. The changes in the DNA that occur while the cell is growing up can be used to determine the age of maturity level of the cell. Some of the mistakes actually cause disease, while sometimes more than one mistake can show up very frequently in a disease. In the case of CLL, there are about six or seven different mutations that are seen often. By following folks who have these mistakes, a pattern of a number of complications or length of time before treatment, etc. can be developed.

This is a mistake:

Trisomy 12 means that there are lymphocytes that contain an extra chromosome 12 (you are only supposed to have two copies). In general, people with this take about 10 years or so to get to requiring treatment. And if one were to use the currently accepted treatment, they might have more complications from the therapy

[Cllcanada Top Poster CURE Hero in reply to kohelet]

T12 are consider to be the second best of a bad bunch ...

[yoniboi in reply to kohelet]

From what I've read today it used to be considered bad, then they weren't sure and now it's considered 'good'.

I'm getting to the point where I don't care what they say, I'll just see how things pan out.

Thanks for the feedback though!!!

[lankisterguy Volunteer]

Hi yoniboi

I am Trisomy 12 UnMutated and have the benefit of a CLL expert doctor that researches the genetic / prognostic markers.

The past research and data is far more complex than any of us understand, and even with all the Next Generation Sequencing, the CLL experts have more questions than answers.

This paper gives a retrospective of past data:

jamanetwork.com/journals/ja...

SNIP:"Contrary to 17p and 11q deletions, the presence of trisomy 12 in CLL at initial diagnosis has traditionally carried intermediate prognostic significance.9 Landau et al19 proposed that trisomy 12 occurs early in the course of CLL, facilitating subsequent chromosomal aberrations. Further studies demonstrated that patients with trisomy 12 can acquire trisomy 19 and that these patients carry other adverse prognostic features."

" OS in unmutated CLL was inferior irrespective of other variables. In fact, median survival was 95 months in patients with unmutated CLL compared with 293 months in those with mutated CLL (P < .001).27,28 On a practical level, sequencing the IGHV is labor intensive, which led to research efforts to identify surrogates for the mutational status, specifically CD38 and ZAP-70."

This is a later paper from China: ncbi.nlm.nih.gov/pmc/articl...

Has a complex chart- Table 1 & more that attempt to list many more variables to predict outcomes.

Len