Hi
When I was first diagnosed I was told I was CD38 negative. My doctor said at the time that this is a positive but I was too shocked at the diagnosis to ask exactly what it meant.
Can anyone give me some clarity as to what this means as a marker?
Thank you
If you are CD38 negative, that corresponds with a longer time to treatment than if you are CD38 positive. It also correlates with around a 60% chance of being IGHV mutated, though the two markers are independent. For that reason, CD38 status can change over time, while IGHV status is unlikely to change.
Neil
Thank you Neil for your very helpful reply. Would I have been tested for IGHV mutation at diagnosis? It is something I will discuss at my next appointment.
Ann
It's rather unlikely that your IGHV was tested at diagnosis, as in the UK it only needs to be done when you are approaching the need for starting treatment. If you are IGHV mutated, you are likely to have a long long remission on chemoimmunotherapy (typically BR or FCR).
CD markers are reported as part of the immunophenotype flow cytometry testing, used to determine what, if any, blood cancer you may have.
Neil
Thank you Neil for your very useful info.
Just for a bit of background , I was diagnosed 5.5 years ago and tend to not think too much about it apart from trying not to catch infections.
I now feel that Covid is making me feel very vulnerable and I've started to take more notice of my condition. My consultant just goes off my WBC and lymphocytes count every 6 months. It's now 26 and 20 respectively and she just says I'm fine!
Best regards
Hello fkatcake, I see you are in the UK. From what I gather about standard protocol in the UK, it’s unlikely you had IGHV testing at diagnosis.
My assumption is that IGHV testing in the UK is considered unnecessary because it is prognostic only and not used to inform treatment choice. You would get a FISH test before treating because it does inform treatment decisions. The standard treatment in the UK for Cll is FCR, a type of chemotherapy. Those who have 17p Cll as shown by FISH do not get FCR.
I would argue that IGHV testing is not just prognostic and does inform treatment choice as there is a growing trend not to give anyone chemotherapy if they have IGHV unmutated Cll, regardless of whether it is 17p or not. I suspect in the UK with the NHS and skyrocketing health care costs, not doing routine IGHV testing is done for budgetary reasons.
CD 38 is a type of protein found on the surface of Cll cells by a blood test done to confirm if you have Cll. When that protein is over expressed, one is considered CD38 positive. As Neil wrote, the odds are you have mutated IGHV Cll as there is a correlation between CD38 and mutation status, but it’s not a perfect correlation. Even if you have unmutated IGHV Cll, it’s still better to be CD 38 negative as you are.
CLL 11q del, CD38+ unmutated and my bumpy ride during the FCR treatment.
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