Good morning all, reaching out to ask if anyone has been involved with this trial. I haven't responded to FOLFIRI regime (12 treatments) or FOLFOX after 6 treatments. Other options available, I am interested in the trial and just awaiting an appt to see the new consultant running the trial at my local hospital.
Thanks for reading.
This is such an exciting trial and good that it’s a past phase 1/2 .
I think it’s this approach that I have been following in the states . They have been looking more into the tumour mutation burden in patients not initially with MSI but as the disease progresses and the mutations develop a girl has been able to use it with great results by introducing immunotherapy agents .
I hope it’s a game changer .
Court
Helpline Number 0808 808 0000
Hey Kim, I have enrolled on the trial, and I'm in the experimental arm. It was suggested by my consultant as other treatments weren't very effective.
I'm feeling pretty OK atm, platelets did drop so I had a week break, now on 3rd cycle. Worth mentioning to your team if your results aren't encouraging.
Good luck with everything.
Hi SierraBravo, thank you so much for replying and I'm really glad to hear you're feeling okay. I am researching options for myself as it makes me feel better so I really appreciate you coming back. Are you having it in London? I think it's good to be in the experimental arm as you could have the other drug in the non experimental arm later anyway. I really really hope it works for you. thank you so much, would be great to keep in touch. Good luck with everything to you too
My treatment is in Birmingham, UHB. Can't fault them.
Awe that's wonderful- my team are wonderful too- I'm so grateful
Hey, wondered how you're doing. I'm on cycle 7, have had some fairly awful stomach pains and diarrhoea. Just keeping as positive as I can.
Hey, awe stomach stuff is so horrid- cycle 7 sounds good though! you're carrying on! and have you had scans? I feel they perhaps scan more on a trial?I really hope it works for you!!! Thank you for asking. I just had cycle 7 of what I'm having which is Foloxiri- cycle 8 on Saturday. Definitely hair thinning and fatigue and some nausea now but overall I've pretty lucky with it. The irinotican part gives you sort of ongoing grade 1/ loose tummy but I've been lucky in that I've only had worse a few times/ I think I've learnt to stay away from spicy and fatty foods which definitely made it much worse on this drug! I was told yesterday there might be something in my peritoneum that should not be- it wasn't seen on a PET/ MRI/ CT done scan but someone in the MDT when reviewing the same scans saw it when they were discussing my liver options- so awaiting an ultrasound for this- before that it was hopefully liver ablation and hopefully it still will be. I have the Braf mutation so any time off chemo/ treatment is trickier but for ablation apparently time off is very minimal. My Oncologist/ MDT have now advised that they do not advise to surgery because of that factor, which makes sense- as a result of that MDT meeting. So I feel like just keep on keeping on! Sending love and good thoughts for your next cycle
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