IVGH mutation status: Can a CLL patient go from... - CLL Support

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IVGH mutation status

CLLmoxie profile image
13 Replies

Can a CLL patient go from unmutated to mutated? That appears to be what my recent test indicates. My appointment is on 6/4.

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CLLmoxie profile image
CLLmoxie
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13 Replies
Newdawn profile image
NewdawnAdministrator

It’s my understanding that the IgHV status remains constant and doesn’t change or evolve like chromosomal deletions. Is it possible the result was initially inaccurate?

Newdawn

CLLmoxie profile image
CLLmoxie in reply toNewdawn

Possibly since unmutated was at hem-onc and mutated was at CLL specialist.

Newdawn profile image
NewdawnAdministrator in reply toCLLmoxie

This article suggests the possibility however for the speculative reasons given in the conclusion;

clinical-lymphoma-myeloma-l...

Conclusion

‘The existence of these new nonplausible heavy-chain variable regions suggests either the CLL cancer stem-cell maintains the ability to rearrange a previously silenced IgH allele or more likely that the cancer stem-cell produced at least 2 subclones, suggesting that the CLL cancer stem cell exists before the process of allelic exclusion occurs.’

It’s complicated testing and mine has failed twice now!

Newdawn

CLLmoxie profile image
CLLmoxie in reply toNewdawn

My doctor answers email or MyChart questions fairly quickly - I will let you know what he says.

Smakwater profile image
Smakwater in reply toNewdawn

In compliment to your citation, mutation status results are based on counting which involves equipment and observation that are subject to calibration and interpretation.

The range for qualifying is respectively ≥2% = mutated, <2% = unmutated. However the publishing listed below states, "For example, concurrent ZAP70 overexpression or 11q deletion by FISH are more likely to be associated with unmutated disease".

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

Therefore if the measure is borderline, a high risk patient may receive differing results depending on the physicians interpretation.

JM

CLLmoxie profile image
CLLmoxie in reply toSmakwater

I was told ZAP70 is no longer considered reliable.

Smakwater profile image
Smakwater in reply toCLLmoxie

However, there are equivalent measures, e.g., TP53 or considered high risk karyotypes.

johnl profile image
johnl

Mine actually went the other way, from mutated to unmutated. the latest Dr attributed it to a faulty first test, however my 16.5 year wait and watch sure looked like a mutated IGHV patient.

john

CLLmoxie profile image
CLLmoxie in reply tojohnl

We will take whatever good results or outcomes we get 😊 I have probably had CLL for over ten years and only known for about it for one year of W & W with treatment soon.

Annvaughan profile image
Annvaughan

When my husband was first tested locally for mutation status it came back mutated. Then we went to Mayo for a second opinion and the test came back unmutated. My husband joined the NIH Historical study and they retested since there was a discrepancy between the two tests. The results came back and indicated 2% unmutated. He is right on the borderline between mutated and unmutated.

CLLmoxie profile image
CLLmoxie in reply toAnnvaughan

Mine this time was 6% mutated

placebo_09 profile image
placebo_09

Most tests like this have a margin of error usually indicated by a percentage ( + or - x%). My first IVGH test, that said I was mutated, was probably within the margin of error because the result was right on the cut-off for being Mutated. A second test was done by different lab as part of a clinical trial clearly put me in the unmutated category.

SethB34 profile image
SethB34

I was tested as unmutated with a rate of .68, well below the 2 pct threshold. So I'm going to have to keep a closer watch on it. I wouldn't be surprised at all if reports come out in the future stating that mutation status is not so constant after all. One question I have is regarding the rate of mutation. Has anyone had experience, mutated or unmuated, with having rates of mutation go up or down?

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