My husband was diagnosed with CLL in 2004. He had 6 rounds of FC and achieved a good remission. In 2010 he relapsed and had FRC again 6 rounds, again a very good remission. He is IVG mutated and FISH test was negative to all deletions. He is now out of remission. Has just had a FISH test and has come back with TP53 and 17p deletion. Hospital think Ibrutinib only option. He has IVIG infusions for repeated infections. Anyone else been in this situation. Was a total shock to find these deletions and am very worried re prognosis. Any input gratefully received. We live in UK.
Written by
lemsford
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Hi! You are lucky to have so long remissions to catch Ibrutinib and Venetoclax, with which having del17p is *no longer* associated with a higher risk of progression according to the latest studies:
These drugs target different pathways which is good for the case if you have progression or side effects on one of them. New generation of drugs and advanced therapies with even fewer side effects are already in the clinical trials.
My dad suffered a relapse 6 month after the first therapy and got del17p along with it, which he did not have earlier. If your partner has no Richter transformation or F-refractory status and no complex karyotype, you should not be worried much.
Thanks for your reply. Cannot get Venetoclax in uk.
Husband has no lymph nodes - all CLL is in the bone marrow, not sure if Ibrutinib works as well on the marrow? He is age 64. Cannot get on a trial as has had bowel cancer 2 years ago - in complete remission.
MRD negative results with Ibrutinib are not as common as with Venetoclax, particularly for the real-world patients who had some exclusion criteria for clinical trials but the progression free period is nearly as good as with Venetoclax.
Having no external lymph nodes does guarantee that the internal ones do not grow. The external lymph nodes may appear at a later stage. CT scan can be used for observing the state of the internal nodes and the spleen enlargement.
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