Choice and timing of treatments

Choice and timing of treatments

I have 13q deletion CLL and, apart from fatigue, have almost no other symptoms. I used to get night sweats but they are now very rare. I'm beginning to consider what treatments will be best for me when necessary. My consultant Martin Dyer at Leicester Royal Imfirmiary has moved into full-time research, although he's happy for me to email him. At our last conversation he mentioned the development of new treatment with which he was involved that - apparently - may make CLL "as treatable as diabetes", although I'm not yet sure what this is.

Below are the results he emailed to me last, with the comment "this is all good!":

…has a clone with heterozygous 13q-deletion (49%)

Karyotype: nuc ish 6 (CEP6 x 2, TNFAIP3x 2, PRDM1 x 2) , 8q24 (MYC prox x 2, MYC dist x 2), 11 (CEP11 x 2, ATM x 2, FDX x 2), 12q13 (DDIT3 prox x 2, DDIT3 dist x 2), 13q14 (D13S319 x 1, D13S25 x 1), 14q32 (IGH prox x 2, IGH dist x 2), 17 (P53 x 2, MPO x 2)

Vh 2-5 mutated (90.1)

I'd appreciate your thoughts.

4 Replies

  • All the stuff after Karyotype are a listing of FISH probes and tests used... not really of much importance...

    You are VH2-5 sterotyped B cell receptor which is somewhat rare... but no big deal that I'm aware of...

    So you are 13q deleted and you can hope for. Don't discount fludarabine, cyclophosphamide, rituxan (FCR), many with these markers can get 10 year remissions and some are considered 'cured' by docs at MDAnderson, but not universally...


    nice sky photo...😄

  • Thanks Chris - helpful. What exactly does "VH2-5 sterotyped B cell receptor" mean?

  • Stereotyping is a new field looking at patients that appear to have similar V gene anomalies. IGHV is actually a large group of genes and studies are showing sterotypes progression across groups of patients. This occurs in about 30% of CLL... the other bunch are not stereotyped... as far as we know...

    So think of this as the gene driving the CLL bus... some bus drivers are meek, others are a bit aggressive and others are raving genetic lunatics, firing off Richter's transformation at the drop of a hat...

    You are fortunate to get this depth of testing clinically it is usually reserved for clinical certainly is not done routinely.

    Hope that was helpful... I suspect I’m VH4-39, the Richter's driver, but I will never know... The hope is to one day be able to treat CLL based on these and other genetics but it is still years away... 😳

    Check out Dr. Sharman... he uses Mr. Potato Head...


  • Dr. Sharman's blog is a great resource. I just spent a couple of hours reading up and am now trying to determine which stereotype group I may be in:

    I had the test because I volunteered to donate samples for research.

    PS the sky did all the work in that early morning photo - I just pointed and clicked a few times :-)

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