Profile

Highkaren

Regular user
Female 55 y.o.
ABOUT ME

55 married to Alan for 22 years.i have two gorgeous boys, 19 and and 22 and 2 Labrador dogs. Disgnosed with caecum cancer 3 August 2017 discovered by accident whilst in preparation for removal of an ovarian cyst a CT revealed the cancer in the cecum and ovary and omentum . No symptoms. Further tests done to decide which was primary tumour and cecum was the culprit. Subsequent meeting with oncologist 30th August added peritoneal spread to the list and therefore incurable, stage 4 but treatable .
chemo scheduled 12 sept 2017 6 clycles folfox.

New baseline scan being done 15th sept as original one back in June !!!! but delays caused as no one looked at the CT as part of the original cyst operation plan. When they did boy did they ( and me) get a shock...which brings me back to where we are today heading for chemo.......

Completed 6 rounds of folfox with no issues, still not symptomatic of disease so always a wonder as to what’s going on on in there !!! Next scan 5 Dec and then dreaded wait for results 20th December..

December results cancer stable great news and good Christmas

January emergency hospital admission with pain on right side, not bowel blockage turned out to be an infection caused by some of the tumour dying .

March new round of folfiri and aflibercept...definitely harder than folfox .! And lost hair on cycle 3

Scan 24th April results 9 May 2018 ... stable

In hospital again this time whilst visiting mum and dad in Manchester ..ct scan and as previous just an infection .....stable scan again.

Off chemo 11 June 2018 for a break

August ...stable scan again

Aug ...Heard Christies in Manchester going to be trialing PIPAC so wrote to professor o Dwyer for opinion at Christie’s. Long story short but their MDT suggested park PIPAC for a later date and do surgery. WOW. If Scotland won’t operate christies will.

Oncologist not happy but saw surgeon in Scotland in November who said yes for surgery and offered HIPEC as well if possible. Chose to have surgery in 2019 rather than Christmas so 4 more rounds of folfiri

January 2 rounds of folfiri down (hair fell out again) and hospitalised for another infection. Necrotic tissue, again no cancer spread but this time drain required and 16 days straight in bed.

Plan now, no more chemo ,big surgery and then take it from there

March 2019 ... infection all healed, feel great ...Surgery date confirmed beginning April

1st April 2019 cytoreductive surgery ...right hemicolectomy,oopherectomy ,although prepped for hipec this was abandoned due to high pci index. In hospital 2 weeks and recovered well

May scan ...stable no growth ...no chemo
July scan ...stable scan no growth ...no chemo

Sept referral to Jamie Murphy imperial college to discuss PIPAC. ...discussion ruled out pipac as scar tissue from previous surgery would inhibit flow of aerosol chemo. Further option put on the table to do CRS again and with hipec as pci index was borderline at 23 and my cancer is stable. Mr Murphy prepared to take a more radical approach than previous surgeon only obstacle now is how to get referred from Scotland nhs to England nhs when my current oncologist won’t support

#neverdullinacancerworld#continuallypushingboundaries#learning to live with cancer :x:

No go to surgery with Jamie Murphy after my previous surgeon sent letter detailing my operation. Issues with small bowel seem to rule out further surgery potential success so for now just enjoy stable scans and no chemo

Feb 2020 off to South Africa for a month and will get scan results on return

March 2020....lockdown and progression.perimets grown a little and pushing against the liver. No mets in liver though so good news. Start folfiri again after 16 months off chemo

Aug 2020 Folfiri not worked and for some reason I didn’t tolerate treatment well this time.switching to lonsurf

April 2021 still stable on lonsurf ( 8 months) going to add avastin in to see if that works better or at least keeps it stable for longer.