Mutated or unmutated?: How do you know if you're... - CLL Support

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Mutated or unmutated?

Larcons profile image
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How do you know if you're mutated or unmutated? I had a BMB a few months ago and also FISH, flow cytometry, peripheral blood etc. but no mention of mutated or unmutated. I'm 13q14.3.

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Larcons profile image
Larcons
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Newdawn profile image
NewdawnAdministrator

You would require a separate hyper mutational test Larcons to establish your IgHV status. It’s not part of the FISH test.

A ‘surrogate’ result can sometimes be found on your Flow Cytometry test by looking at the percentage of CD38 and Zap 70 but it’s not as accurate as the actual test.

It’s not a test that’s readily available in some countries and 7 yrs on, I still don’t know mine in the U.K. Seems more readily available in the USA however so I’d enquire.

Regards,

Newdawn

Larcons profile image
Larcons in reply to Newdawn

Thanks, Newdawn. I just looked at my flow cytometry and it says I'm negative for CD38 but says nothing about ZAP70. All this CD stuff is mind boggling.

Newdawn profile image
NewdawnAdministrator in reply to Larcons

Well that’s promising Larcons and yes I agree, it is mind boggling! Importantly, you have a decent chromosomal profile but it would be an idea to ask your specialist about the hyper mutational test. In the U.K. it doesn’t affect whether FCR is still offered (you get it whether you’re mutated or unmutated first line without TP53), but should you ever need treatment, that shouldn't be an issue anyway in the States because they seem to have largely moved away from chemo even first line.

Newdawn

Larcons profile image
Larcons

That's nice to know. I live about 100 miles from Mayo Clinic in Rochester, MN. I'll have to look into it.

Smakwater profile image
Smakwater

In U.S it should have been included with Flow. I don't know it differs between labs. just cost more to make it a separate event.

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