Hi everyone,
31 year old father of one here. I've been on nilotinib/Tasigna since 2016 and got a pretty good response to it (to start off with). I even managed to get beyond MMR4 in 2019 on a few occasions. Unfortunately since then, the numbers have been going the wrong way and my most recent level was 0.016%, or roughly MMR 3.8
It's still not quite at the level where my doctors are considering doing anything different, so we're just monitoring. I must admit I'm quite worried, even though I know that fluctuation often happens with blood tests. I think if things were to carry on going the wrong way, my haematologist would consider changing me onto dasatinib or one of the other TKIs
Has anybody had any experience with combination therapies? I'm particularly interested in peg-interferon...I've recently seen the results from the SPIRIT trial which came out in January which showed that the combination of imatinib and peginterferon seems to be better at reducing the numbers than imatinib by itself. The actual life expectancy data seems to show no statistical difference, but I think that's because TKIs are so good at keeping people alive that adding extra therapy doesnt make a difference. I think peg-interferon used to be a treatment for CML before TKIs were invented, so there may be people in this forum who used to take them
Reason I'm interested is that obviously I'm on the younger side and so I'm nervous that the cancer will mutate at some point and perhaps the interferon will reduce the chances of that happening. Nobody really knows what happens when you've taken TKIs for 20 years because they haven't been around that long...
I did ask my haematologist if they ever use this in real life, and he was a little dismissive (it was a registrar, not a consultant, so perhaps he was just being evasive because he didn't feel he knew the answer)
To cut a long story short, has anyone tried peg-interferon either by itself or in combination with a TKI in a trial?
