I was diagnosed with advanced (stage 4) sigmoid bowel cancer in January 2015 (T3 N0 M1 and EMVI positive). Successful removal of both bowel tumour and liver mets followed in March and August 2015 respectively with both Surgeons aiming for a 'curative' outcome. Unfortunately severe colitis and bowel blockage following the bowel surgery in March meant adjuvant FOLFOX chemo was stopped after 4 cycles and further surgery was necessary in October 2015 to remove the damaged (ischaemic) bowel and create a colostomy.
Mop-up chemo was not recommended by the Oncologist and Surgeon as they were concerned that colitis could return leading to further permanent damage to my bowel.
Perhaps inevitably the December 2015 routine CT scan revealed a recurrence of three or four new tumours on my liver. Second line Chemo (FOLFIRI) was started in January 2016, with 50% strength for cycle 1, 80% for cycle 2, and 100% for cycle 3, to help my bowel tolerate it.
Cetuximab was quickly added to the cocktail when KRAS results were returned as wild-type. The Oncologist was looking for enough shrinkage for further liver resection.
I started exercising and eating well according to the philosophy in the book ‘anti-cancer, - a new way of life (Dr David Servan-Schreiber), - but not 100% obsessively. I also practise mindfulness using the ‘Headspace’ app. If nothing else I figure it means that my body is in the best possible place to cope with whatever happens next.
On a positive note, my Stoma has totally changed my life. In 2015 the colitis led to 15-20 bowel movements a day together with some problems of control meaning I was virtually a house prisoner. I am now free and have a life again, including taking holidays abroad (in between chemo treatment and dealing with the inevitable side effects).
In July 2016 after 12 cycles of chemo a CT scan showed that all but one lesion on the liver had disappeared; the remaining one was 'tiny' (type unknown). An MRI scan was planned for the middle of September, followed by appointment with the liver team to observe any lesion changes (none) and decide on the next step. I had six weeks off chemo and it felt very odd!
In August 2016 there was a change of plan .... MDT recommended that I go back onto the same chemo cocktail and at the same dosage as I had responded so well. The plan was to keep me on Chemo permanently in some form. By May 2016 I had experienced two PICC line infections and a clot so a port under the skin in my chest was fitted - a brilliant bit of kit!
CT and MRI scans in Dec 2016, found no evidence of disease (NED).
In January 2017 the hospital readily agreed to train me to disconnect the 5FU chemo pump from my portacath so that I did not have to wait around every other Saturday evening for the lovely, but unpredictable District Nurses. This was so liberating and gave me back some control, something that can feel in short supply when you have cancer.......
CT scans in April and July 2017 also showed NED. Nov 2017 scan was also NED but two vertebral fractures were revealed. MRI scan confirmed they were NOT cancer related. March 2018 CT scan - NED, but osteoporosis was confirmed via a dexascan.
June 2018 - April 2020 CT scans all NED.
In April 2020 I had my 100th cycle of FOLFIRI and Cetuximab. Covid-19 shielding prevented any celebrations .......
July and Oct 2020 CT scans NED
January 2021 PET scan - NED
April and July 2021 CT scan NED
The side effects are sometimes annoying but on the whole are very manageable. My consultant and I regularly review whether I should continue on the current dosage (all 100% except Irinotecan at 80%), but we always end up with same conclusion - it could recur very quickly, so ‘if it ain’t broke don’t fix it’.
I enjoy my chemo days as I feel as if I am doing something to annihilate any stray cancer cells that have a mind to appear, and I spend most of the day laughing!