Latest Fish test results??

[rcusher]

I just had another Fish test completed due to the fact that the Ibrutinib that I have been on for almost 5 years is not working as well anymore. In my first Fish test many many years ago I was Trisomy 12 .The new report now shows that I have acquired both deletions of 13q and 17p and still have Trisomy 12.

Any thoughts, I know that 17p deletion especially isn't what I wanted to see but 13q I don't know much about.

Is this normal to have after 2 treatments, FCR and Ibrutinib.

I am being referred for a clinical trial.

Thanks,

Jack

[SofiaDeo]

It's possible to develop additional mutations as time goes on. As far as the 17p goes, it is considered a "less favorable" one because not all our treatments will affect it. Before the targeted agents, it was considered "very bad" because of this, plus the fact that this deletion is the one that generally means the CLL cells take the longest to die. The 13q is the most common deletion. I have both of these plus others (not Trisomy) and while initially my prognosis was "50% mortality within a few years", I am responding to the newer agents. So if you are reading older articles talking about how "bad" a 17p deletion is, try to stay calm, it's *old* information.

I imagine you will be in a trial that has Venclexta as one of the drugs. There are a number of trials out now, trying to see if any of the combinations are better than others in terms of outcomes. These combos have all been shown to be effective, just, they are trying to see if one gives any advantage over another. So even though you are being recommended for a trial, you won't be a "Guinea pig" in the sense your docs are wanting to use some unknown, untested drug on you. I commend your docs and other places for advocating for these types of trials. When the current treatment guidelines say "pick one of 3-4 options, we don't know if one is better than another" it's really helpful to try to see if one of these actually *is* better!

[rcusher in reply to SofiaDeo]

Thanks for your reply. I knew that things could change but I guess I was just a little shell shocked with the 17p deletion. I am keeping up with all the latest and don't rely on old Dr. Google for my info.

My Dr. who is a Onco/haem. is very up to date on CLL and he knows that I was in favour of going into a clinical trial. My other option he gave me was V & R for the 2 year period . but I am trying for the clinical trial. The trial that's at my local Cancer centre is LOXO-305 which I have heard good reports from people who are on it. Fingers crossed.

I am in fairly good health and believe I am getting the looked after well.

Thanks,

Jack

[SofiaDeo in reply to rcusher]

Oh Loxo-305 is having wonderful results! I forgot about that one lol.

[spi3]

My husband learned he had CLL in March 2022 (he is muted TP53 and 17p depleted) - he was accepted in a Dana-Farber study for his particular CLL with treatments of A&O&V

SEP 2022: Currently after 6 months of treatment my hubby's BMB revealed CLL was reduced from 90% to 4 point 8%. He also finished his obinutuzumab treatment too