Rottie

[Rottie1934]

Can someone explain the following comments on my report after seeing my oncologists/homotologist : Zap70 is high with igvh unmutatet.

Thanks

[Newdawn Administrator]

Hi Rottie,

You can get an indication of your IGHV mutation status from Flow Cytometry testing and this appears to be what you have been given by your haematologist. The only way to be sure is by a specific IGHV test but this is not always offered especially in the U.K.

To explain briefly because this can be quite complex. ZAP-70 is an abbreviation for Zeta-chain-associated protein kinase 70. With the ZAP-70 result, more than 20% positive B-CLL cells indicates you are likely to have unmutated immunoglobulin V genes, predictive of a less favourable clinical course. However, it is a surrogate result (used in place of the specific IGHV test) and is only approx 70% accurate.

It’s generally better therefore to be mutated than unmutated but this was more significant before the introduction of immunotherapy and targeted drugs for CLL.

No reason this should be a cause for concern because the right treatment can overcome this disadvantage now. Do you know if you have had a FISH test?

Hope this helps,

Newdawn

[Rottie1934 in reply to Newdawn]

Yes I have. Thanks for the info.

[AussieNeil Partner Administrator]

Hi Rottie,

About half of us fall into the category of having unmutated IgHV. This correlates (but isn't a given), of having a shorter time on watch and wait before needing to start treatment. Having IgHV unmutated CLL used to correlate with shorter remission times on older chemotherapy treatments, like FCR and BR, (again, not a given), but if treated with the newer 'non-chemo' targeted and inhibitor treatments, that statistical difference in time to remission largely disappears.

Having a high ZAP-70 result and/or a high CD38 result i.e. being ZAP-70 and CD38 positive, correlates with being IgHV unmutated. About 65% of us who are ZAP-70 and CD38 positive, are also IgHV unmutated. ZAP-70 testing isn't that easy to do reliably and can change over time. IgHV test results are unlikely to change over time.

Bottom line is that your specialist is aware of the importance of testing for these prognostic markers, which would probably be why Ibrutinib was suggested as a good treatment for you.

Neil

[Rottie1934 in reply to AussieNeil]

I am on IB 420 mg 2nd month my wbc was 85,000 now down to 38,000

No side affects so far. Thanks for the info I can understand it a little better.