can your igvh change from unmutated to mutated?

[tom3659]

mutaion status ivgh

[Jm954 Administrator]

The short answer is no but it's now thought that IGHV mutation status is more of a percentage mutated continuum than a simple yes or no.

If you are around the cut off point for deciding on unmutated/mutated status then, given that the test is technically tricky depending on the method used, you could come out one side or the other if the test isn't very accurate or precise.

ERIC is an international organisation trying to improve testing in this area.

Jackie

[GMa27]

I have seen a few post/comments over the years that it happened to them. I guess it's rare and like Jackie's reply, it could be due to testing accuracy.

Since treatment is based on it, I would have test repeated.

💕

[Newdawn Administrator in reply to GMa27]

Treatment isn’t based on mutational status in the U.K. GMa27 and as a result the IGHV isn’t routinely carried out.

I asked for mine to be done as I’m on a clinical trial and twice it came back inconclusive so I still don’t know 🤨

Regards,

Newdawn

[GMa27 in reply to Newdawn]

Interesting! Then how do they determine kind/ type of treatment? If I was unmutated, they would have picked a different treatment.

[Newdawn Administrator in reply to GMa27]

They don’t factor it in unbelievably. Unmutated people still get FCR first line unless they have a TP53/17p deletion.

That’s why so many of us join trials but even on Flair, chemo is still one of the arms regardless of IGHV status.

Not defending it but it’s the reality here.

Newdawn

[GMa27 in reply to Newdawn]

Very interesting!

I am grateful to my FCR and that I don't have 17p.

Amazing how differently hematologist from all over the world treat/test.

Even within the USA there is some diversity.

I will preface stating (in the USA) so that it doesn't confuse people. I learned that some chemo outside of USA is a pill form. That was an eye opener!

Thanx!

[Mystic75 in reply to GMa27]

And just to make it more confusing, the medical staff will refer to treatments like Ibrutinib or Venetoclax as chemo.

When my husband added Venetoclax in the hospital, the paperwork referred to the treatment as chemo. I almost had a panic attack because I was afraid they were giving him the wrong treatment.

[GMa27 in reply to Mystic75]

Really!!?

Oh geez I was already confused! 🤪