At a recent restaging the test was repeated. Because the IGHV mutation status doesn’t change over time I am not surprised to see that I am still unmutated.
But what does IGHV3-33-IGHJ3 mean?
Update: my question is poorly worded. What I meant to ask is what is the prognostic significance to having unmutated IGHV3-33-IGHJ3? That is are outcomes worse for those with unmutated IGHV3-33-IGHJ3 compared to the group of all people with unmutated IGHV? Perhaps the answer is not yet known.
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john-doe
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They create "clinically relevant" subsets of patients based on their IGHV. Just like markers some subsets stand out and appear to do better than others.
The video posted by DriedSeaweed showcases another fascinating line of research, though TBH mostly beyond me. FYI here's the paper Rosenquist referred to ncbi.nlm.nih.gov/pmc/articl...
And scanning it quickly, there is a table where within the IGHV3 family, the IGHV3-33 falls into “other” and that it on its own was not found to have particular prognostic significance. Again, based on a superficial read.
As you will no doubt agree, it is complicated. I confess to no being able to explain down to the detail (and much of the less detailed).
The following was posted 6 months ago by avzuclav and if you go to the end you will find at least IGHV3-30, the first number is a gene, the second number is a location. Since your number is 33 (and I have an even different number for the location with my IGHV4-59 .
It has to do with gene rearrangement and we are all different in what is going or has gone awry in our cells/genes/chromosomes.
If you can read and reread some of this information you may over time get some sense of its relevance. I get bogged down in the weeds of it all.
Hi JD, I think it was closer to the 21 m mark on the video. In any case , it does have to do with gene rearrangements and some are good prognostics like IGHV4-34 which he said was a very positive prognostic, better even than 13q. There are other rearrangements that are negative. In any case he talked about rearrangements being divisible into prognostic subsets.
Here is another possibility for reading about Mutation Analysis, in this specific case, it is a Chinese cohort that is reported. To get the gist, read all of the info.
Look for the subhead 3.2 IGHV Usage (last line has your number)
I have had CLL since 2015. I was diagnosed in 2017. I had all the important blood tests...FISH & FLOW. I am mutated and have good markers, kappa light chain. All is good and I have remained in Stage O. White count has gone from 11 to 16 in 7 years. Red counts are good. All is good and I am classified currently as "indolent" stage 0. All is good except for the fact that I am also IGHV3-21. When first diagnosed in 2017 and receiving information that having 3-21 is an aggressive marker I came down with such extreme anxiety. It was so stressful. I researched and researched this classification. I found there was little current research on those of us having 3-21 and that a lot of the literature is based on research by Tobin in 2006. My oncologist contacted all the CLL specialists in the field and they had little to offer on 3-21. Although my "3" is in a different family than yours please know that research cannot totally predict one's future. Also, with all the new drugs for our disease perhaps being in the "3" family will eventually be categorized as something different. Peace to you john-doe....Pat
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unmutated cll patient treatment with fcr 
Some answers back from doctor. 
Ighv unmutated
FCR or BR?
