I recently got my FISH results back and had for some reason assumed that I would also get IGHV mutationial status tested along with that as part of pre-treatment diagnostics. However, my consultant pointed that was not done as routine at my (non CLL specialist centre) hospital.
My CD38 was marked simply as NEGATIVE on my flow cytometry report taken on diagnosis, so the assumption would be be that I am likely mutated using that as as a surrogate test. Searching back through the archives I found this from Chris in a recent thread healthunlocked.com/cllsuppo...
"There is a direct test for IGHV mutation status and gene driver number, but it is extremely expensive and is rarely done outside major CLL research centers...However, we have a cheap test, called Flow Cytometry, that every CLL patient has had done at diagnosis. A cell surface protein, called CD38, is a good indicator of IGHV mutation status... so clinically CD38 is used... as a prognostic marker.
If your CD38 is under 30% your IGHV gene is likely mutated. If the percent is over 30% the gene is likely unmutated. This CD38 is called a marker and is about 70% correct. Further, the percent changes over time, but rarely goes over or under the 30% mark."
I know that some specialists, the late Terry Hamblin included, felt that the surrogate test provided by CD38 was unreliable due to its tendency to change over time, whereas IGHV remains constant.
As IGHV mutational status is acknowledged to be a good indicator of likely response to FCR treatment, including potential clonal evolution, I'd quite like to have the test done now as I approach treatment.
It would be useful though to get an idea of what is going on at other hospitals in relation to this test prior to treatment and outside of trials. I gather the test is not cheap, and want to make an informed decision about whether I should be requesting it based on the experiences of others in a similar situation here in the UK.
I'd be really grateful if people could briefly let me know of any useful experiences or views on this subject.