13q14.3 : How do you look up prior questions? I... - CLL Support

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13q14.3

Jhoover1014 profile image
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How do you look up prior questions? I have a 13q14.3 deletion and curious as to what means and I’m sure it’s been discussed before but I don’t know how to search for it.

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Jhoover1014 profile image
Jhoover1014
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Newdawn profile image
NewdawnAdministrator

Take a look at the related posts to the right Jhoover.

Newdawn

Newdawn profile image
NewdawnAdministrator

Heavy going but worth a read;

onlinelibrary.wiley.com/doi...

Newdawn

JJoover,

The short answer means you have what is considered the "best" type of CLL, a deletion of a bunch of DNA base pairs on your 13 Chromosome. There are other chromosome deletions (11q,Trisomy 12, 17p) that are considered to have less favorable results....though each individual is different. I know people with 17p who have gone 10 or 15 years with no treatment and others with regular 13Q (mine also) who have treatment much sooner than expected.

Scott USA/Maine

Newdawn profile image
NewdawnAdministrator in reply to

It’s not quite as straightforward as that with 13q14.3 it would appear Scott. It’s true that 13q without additional chromosomal deletions is one of the most favourable indicators but 13q14 type II deletions seem to indicate elevated genomic complexity and it’s good to have awareness of this profile.

14q deletions are often associated with shorter time to treatment but I do not profess to be any kind of expert in this area of CLL genetics. It’s something that needs full exploration with the medical team and preferably a geneticist.

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/218...

Here’s a number of articles on the subject but this is a very complex and unpredictable area and important not to anticipate definite outcomes based on limited information.

There’s too many genomic aberrations and, as yet, not fully understood variations. Even in 13q14, there appear to be subtypes that affect time to treatment and outcome.

This is a more up to date study but again it’s heavy going;

ncbi.nlm.nih.gov/pmc/articl...

Best wishes,

Newdawn

in reply toNewdawn

I read through this and actually found it pretty interesting. Mostly it discussed the size of the deletions and monallelic vs bialleric. I have the oddball one, biallelic and there is not much information regarding it out there other than "doesn't seem to matter".

They also definitely described a type II (which I was unaware of) consisting of a larger area of deletion as possibly less favorable, although somewhat vague. Much of what I have read suggests the MDR can be small (100KB) up to large (70MB) without much difference....but as you say there are too many genomic aberrations to fully understand the exact path CLL can take.

Scott USA/Maine

Newdawn profile image
NewdawnAdministrator in reply to

Yes, this was the conclusion on the biallelic 13q14 deletion;

‘Our results indicate that bigger deletion including RB1 or presence of biallelic 13q14 deletion is not sufficient to be considered as adverse prognostic factor in CLL/SLL’

Sometimes I think we are blessed in the U.K. in a perverse sort of way by not having cytogenetic testing routinely available until treatment is imminent!

Newdawn

lankisterguy profile image
lankisterguyVolunteer

I agree with Scottxxoo "...though each individual is different. I know people with 17p who have gone 10 or 15 years with no treatment and others with regular 13Q .... who have treatment much sooner than expected."

The FISH results only predict the range of progression /speed for a large number of patients. It does not tell where one patient will fall on those curves.

In Dr. Lamanna's talk at CLL Live 2018, you will hear her describe how she estimates the "tempo" of disease progression as the only way to predict how soon a specific patient might need treatment.

youtube.com/watch?v=BaAVVBu...

Len

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