Changing CD38

[wiggles123]

I'm new to you support association and grateful to have found it. I've had Cll for 2 years and had another biopsy last week on an axillary lymph node. The first flow test said I had CD38, this test said there was no evidence of CD38. Can this change over a 2 year time period? Any ideas are greatly appreciated.

[AussieNeil Partner Administrator]

Given you mention having had flow cytometry testing on biopsies, I take that you have the SLL form of CLL, where your peripheral blood lymphocyte count is normal? Have you ever had a flow cytometry test done on a blood sample?

CD38 can indeed change over time and you've seen a change to a more favourable clone - one that is negative for CD38, unless that reflects variations between how your individual nodes are expressing CLL because your CLL is not spreading around via your blood.

Neil

[avzuclav]

I had a similar experience, 67% CD38 at diagnosis, 5% CD38 18 months later (two different labs). My ALC doubled (14k->28k) during the same period. It's been 18 months since then and my ALC hasn't doubled again so I'm taking the lower CD38 as a good sign!

[Cllcanada Top Poster CURE Hero]

CD38 marker 'sort of' correlates with IgHV gene mutation, but it can change over time and is only 70% accurate.

The other marker is ZAP70. Again its a 'sort of' situation.

The only accurate way to get IgHv mutation is by a direct test, but it is time consuming , expensive and needs skilled lab techs... so, it is not offered clinically outside of some CLL research hospitals.

Currently there is a programme to get a worldwide certification system for labs wishing to do this testing, so things should improve in the next few years.

Cost in managed healthcare will still remain an issue, unfortunately...

~chris

[ikahan]

My husband had a similar experience. 25 % at diagnosis and 8% 3 years later.