Profile

Barbara

Regular user
Female 64 y.o.
ABOUT ME

T4N2M1 diagnosed in caecum in September 2014
right hemicolectomy October 2014
3 months xelox before liver resection for solitary metastasis May 2015
Further three months chemo completed September 2015. Oxaliplatin removed because of peripheral neuropathy. Capecitabine initially increased and then reduced because of side efects
Now officially 'disease free' and on monitoring regime - we'll see what happens!
November 2015 scan clear. Signed off by oncologist. CEA levels a 'bit high' so blood test in a month, and if that's ok then scan in six months. As good as it can be at this point.
Unfortunately cancer has returned and now terminal. On palliative chemo from November 2016. Peritoneal mets too advanced for the Christie to operate and also a liver met. A shock to everyone. Clear scan April 2016. Anaemia found July 2016. Clear colonoscopy September 2016 but CT scan then found the recurrence.
Still looking and feeling well which makes whole thing surreal at the moment but reality starting to bite.
Scan Feb 2017 showed 29% shrinkage but needed 30% for IMPALA trial. Further shrinkage in May 2017 took me over the threshold but trial closed a fortnight ago!
Carrying on irinotecan and capecitabine for another 12 weeks then another scan. Responding much better than oncologist expected. Possibility of going back to oxaliplatin, this time with addition of self-funded avastin when irinotecan stops working, and then lonsurf. The Christie said highly unlikely I would become operable, but I don't know what % of shrinkage required. But happy with current treatment as working and very tolerable. Fasting 48 hours before chemo but don't know if that's cause of lack of side effects and effectiveness or just coincidental!
July 2017 scan showed stability and October marginal further shrinkage so carrying on with current treatment.
On May 2018 radiologist found it difficult to identify any disease and said ‘at worst stable’. If same again in August then oncologist says he will sit down with radiologist to look at scan in detail and then take to MDT with a view to going onto ‘watch and wait’. Fingers crossed for a chemo break in the autumn!
August 2018 scan shows stability. Now seems that previous scan wasn’t clear, but was stable, so that’s three stable scans in a row. Short chemo break because of neutropenia followed by a holiday means my hair is coming back - but it will go again once the irinotecan kicks in again. As you were!
December 2018. Another scan. Stability again. I’ll take that!
March 2019. Less good news as the irinotecan has stopped working. Starting oxaliplatin which oncologist thinks will work for a maximum of 12-18 months. Investigating PIPAC trial at Imperial.
April 2019. Jamie Murphy at Imperial said he could operate straight away and didn't need the trial. This was good news as oxaliplatin only worked for three cycles and I hadn't many options left.
June 2019. CRS and HIPEC at Imperial. All went well, and in fact no sign of peritoneal mets when they operated. 25 lymph nodes removed and all were clear. The only sign of cancer in the histology results was some venous invasion. London recommended adjuvant chemo, but local MDT said no, so am now on normal surveillance pathway. Imperial will look at scans as well as local hospital.
Am recovering well - the best thing was having urethral stents removed!
Found I have bile salt malabsorption as part of duodenum removed. Will have to take powders for rest of my life, but as long as I remember it is very manageable.
First post-op scan clear. Next one March 2020.
March 2020 showed 4cm recurrence on my liver and subsequent PET scan another possible area of concern. Imperial confident they could operate, Leeds less sure and current virus situation means no one wants to operate imminently, me included. A second PET scan next month to reassess, with the hope the peak is over then. Hey ho!
So the second PET scan showed too much growth to operate after 8 weeks. Also suggested that if the metastasis had grown that quickly then it was probably better not to operate. Went onto lonsurf for 7 months before I got further progression. Jamie Murphy didn't give up on me and referred me first to Profession Jiao Long at the Royal Marsden, who said he could operate, but couldn't take on any new out of area patients because of covid restrictions. Then he referred me to Charlie Imber at the Royal Free who was willing to do Whipple procedure and open liver surgery at the same time. This would have been a very risky operation but I was willing to go ahead - then a new wave of covid struck and I became collateral damage again. My oncologist and Mr Imber talked about me on the phone at 5pm on Christmas Eve which I think is above and beyond the call of duty. So then I started a clinical trial the Christie. Came off this because of progression in June 2021 and now rechallenging with irinotecan. I've had all the lines of treatment and oncologist says there is now no data to guide them on what to do next - so it's a case of suck it and see! Just had 5th cycle of 6 and will then have a scan (radiographer shortage permitting) to see where we are. Biggest problem has been anaemia. Three blood transfusions only provided temporary relief - but iron infusions have had miraculous effect. Am on palliative chemo so only treating symptoms, not intention of cure - but who knows what will come next?