Profile

HH79

Regular user
Female 42 y.o.
ABOUT ME

Aug 2016 Diagnosed & emergency surgery for bowel obstruction. Primary tumour successfully removed, planned adjuvant Chemo for lymphs.
Sep 2016 - First Oncology appt devastating as additional spread to peritoneum and para aortic lymphs. Now confirmed Stage 4, incurable and BRAF V600E mutation (MSS). Treated Stoke Mandeville Hospital/Oxford Churchill clinic.
Oct 2016-Mar 2017 12 :x: Folfoxiri - chemo break ‘watch and wait’
April 2017 Clear PET scan
May 2017 Declined HIPEC by Basingstoke due to para aortic lymphs conflict.
July 2017- PET scan shows cancer active in peritoneum and lymphs again.
Aug 2017- 6 more Folfoxiri
(Sept scan showed reducing)
Nov 2017 - New treatment plan maintenance 3 wkly Capecitabine & Avastin and transfer to The Chiltern, Gt Missenden and BMI Wycombe.
Jan 2018 - NED CT (aft 4 cycles)
Feb 2018 - Appt at The Christie for second opinion. Discussion about challenge in stopping chemo to do HIPEC for Peri mets, leaving the para aortic lymphs affected to ‘spread’ so shorten life vs extend it. I’m now fully understanding with BRAF mutation in lymph chain, I will always need systemic chemo and very grateful to be on ‘gentler’ maintenance regime.
April 2018 - NED CT scan.
July 2018 - NED CT scan
Changed Cape to 5FU to help feet/hands and continue Avastin
Oct 2018 - NED CT scan
Jan 2019 - NED CT scan
April 2019 - NED CT scan
July 2019 - NED CT scan, started fragmin injections for small lung clot
Oct 2019 - NED CT scan, now cycles 3 weekly and occasional 4wk
Jan 2020 - NED CT scan (stopped Fragmin as clot resolved - for now!)
April 2020 - NED CT scan
July 2020 - NED CT scan
Sep 2020 - CT shows iffy area around colon join which following PET confirms as recurrence. Grateful it is isolated/small.
Oct 2020 - Restart Folfoxiri plan for 3-4 cycles and rescan -
Nov 2020 - Referred for HIPEC again and it’s a YES from the Christie as we are now dealing with a small peri only recurrence! Stopped Folfoxiri after 2 cycles and had CRS and HIPEC on NYE! The surgeon was really pleased able to remove all visible disease and also omentum / ovaries. So grateful to have had. Good recovery and pathology fine.

April 2021- first CT scan after HIPEC is NED! (last chemo was Nov 2020)
June 2021 - devastated as CT shows recurrence lymphs and peritoneum. Did not think peri would lapse so soon. Folfoxiri to start again and get it under control.
Aug 2021 - CT shows all areas reducing!
Oct 2021 - CT showing still good reductions in lymphs and peritoneum resolved/hard to see. Will stay on Folfoxiri for now and so grateful it’s working.
Jan 2022 - clear CT, NED! Going to have further Folfoxiri but at 50% dose and review.
April 2022 - still clear on half dose. Going to revisit 5FU & Avastin, really desperate for a decent run on this but will have an early scan to keep ahead of ‘it’! So grateful.

I live in hope new treatments will come for me and I’ll live a long time. I have two beautiful children aged 9 & 8 and a wonderful husband that make each day better in the face of this awful disease so many of us suffer with.