Negative CD 38

[Madison1995]

Hi. I had 2 flow cytometry one by blood and one by bmb. Both are negative for CD38. I haven’t been tested for IGHV but curious if anyone has heard that negative CD 38 is good and could potentially be a sign that I’m mutated.

[AussieNeil Partner Administrator]

CD38 negative correlates to about a 60% chance of being IgHV mutated. Importantly, it's also an independent good prognostic factor. Being ZAP-70 negative also improves the odds further, but ZAP-70 test measurement is less consistent.

Neil

[Madison1995 in reply to AussieNeil]

Ok. I wasn’t tested for zap 70 I don’t believe. But was curious on the cd 38 since it was negative there was a possibility that could mean I was mutated. Thank you

[caven]

Role of CD38: CD38 is a protein antigen marker attached to the outside of leukemia cells ~ i.e., the B-cell Receptor. The presence of an elevated CD38 suggests a faster progression, “but scientists still do not completely understand why CD38 plays a role in CLL/SLL.”

Proportion of cells with the CD38+ protein ~ 30% is the level for identifying an ‘adverse finding’.

“With regard to clinical outcome, progression-free survival was significantly longer (75% versus 37% at 5 years; P = .00006) in patients with lower CD38+ B-cell percentages.” (See: Blood 2001 98:2633-2639; doi: doi.org/10.1182/blood.V98.9....

Caven

[cajunjeff]

CD 38 is cheaper but imperfect surrogate marker for IGHV status. You more likely have mutated IGHV being CD 38 negative. IGHV is much more expensive to test for than CD 38.

But IGHV is a static marker, CD 38 is not. If you have IGHV mutated cll, you have mutated cll forever. Expression of CD 38 can change over time. CD 38 is thought to correlate to how active your cll is proliferating, so someone who sees their CD 38 expression increasing might be seeing an indication their cll is going into a more aggressive stage.

Almost all markers they use with cll are imperfect and its important to keep that in mind. We have people on here with unmutated cll that have been in watch and wait for more than ten year and are doing great. I have CD 38 negative cll and mutated IGHV, but only made it through two years of watch and wait.

[aptucxet in reply to cajunjeff]

Maybe I'm the exception? I am unmutated IGVH but CD38 negative. 11q deleted......W&W 7 years.......no treatment.

[cajunjeff in reply to aptucxet]

Its not really that unusual to be CD 38 negative and have unmutated IGHV cll. A full one third of people with CD 38 negative cll will have unmutated cll.

They call that having discordant markers. I would think on average that those who do have unmutated IGHV cll, but are CD 38 negative, will do better than those who are unmutated and are CD 38 positive.

The discordant markers you have might offer some explanation why your unmutated ighv cll has given you such a long period of watch and wait.

Lots of us have a mix of good and bad markers.

[aptucxet in reply to cajunjeff]

Thanks, cajunjeff........and coincidentally, I saw my hematologist this morning.......still stable......and "see you in 6 months"

John

[Madison1995 in reply to cajunjeff]

Yes. I agree. I see my dr in May and see if he thinks I should be tested for IGHV mutation. Part of me wants to know and part of me doesn’t. I guess in the grand scheme of things it really doesn’t matter. What will happen will happen

[cajunjeff in reply to Madison1995]

I think out side of a clinical trial, testing for IGHV mutation status should be done when it informs treatment choice. FCR (chemo) can be a curative treatment for younger people who have mutated IGHV cll. FCR does not work as well with unmutated cll and may not work at all with unmutated 17p cll. So for anyone who is under 65ish and considering FCR, I think mutation status testing gives essential information that helps decide treatment choice.

A lot of doctors will not order an IGHV mutation status test for prognostic purposes only.

[Madison1995]

The beginning of all of this I focused so much on the markers and mutations but in my opinion now the only thing that matters is I’m a different than everyone else and only time will tell if I’m going to be ok. Numbers are just a number. We all are different and what’s meant to be will be. Hopefully I live a long fulfilled happy life With maybe some numbs through the road. That’s the best I can hope for I suppose