Regular user

41 year old son of 73 year old mother (69 at diagnosis) who visited A&E in August 2016 due to cramps and constipation, which she had been suffering with for about 6 weeks.
After originally being diagnosed with diverticulitis a colonscopy showed otherwise and two weeks after first being admitted she had surgery to remove a cancerous tumour on 13th August 2016.

Disappointed with my mother's GP, who had a year earlier forgotten to refer my mother to see a consultant due to bleeding from the rear passage.

Follow-up meeting (3 weeks after surgery) with surgeon confirmed it was bowel cancer with spread to the liver confirmed by an MRI scan. Told liver inoperable due to spread on both sides of liver. 19 lymph nodes removed during bowel surgery with 2 infected.
Meeting with oncologist (6 weeks after surgery) confirmed 6 spots on liver (5 areas on right side, 1 on left side), largest being 19mm and the single one on the left side being 8mm. PET scan was planned and, if it showed spread only to the liver, agressive chemo followed by liver resection would be the plan. RFA also an option due to the size of the spots.
2nd meeting with oncologist (9 weeks after surgery) revealed PET scan showed 2 distant lymph nodes affected. One node outside liver (paraaortic, size 17mm, SUV 6.0) and one node upper tummy (left internal mammary, SUV 2.5). Both infected lymph nodes not close to major blood vessels or organs.
Cancer confirmed as wild type (no mutations).
Liver resection off the cards, as well as RFA.

Folfiri chemo planned for mid November 2016. Targeted therapy in 2016 was not funded in Northern Ireland unless a cure is deemed possible by MDT. You could have "topped-up" and paid for the targeted therapy drugs (you pay for the drugs, NHS administer it free), but it was around 20-30k for 6 months' treatment.

My mother tolerated the first 2 cycles of folfiri very well, but in the early hours of the morning on the day she was to receive her 3rd cycle she suffered from partial small bowel obstruction. This was due to adhesions caused by her bowel surgery. She was hospitalised for 9 days, but the bowels resolved themselves with the help of a ng tube and a fluids drip.

Third cycle of folfiri recommenced first week of 2017 with a 20% reduction in dose, after a 6 week chemo break.
Has had 5 successful cycles of folfiri in 2017 and is now awaiting the results of a CT scan on 28th February 2017.

Scan results 22nd March 2017 show that all 6 spots on liver have reduced in size,with one disappearing altogether. Largest spot is now 12mm. Both distant lymph nodes are now in the normal range at 8mm and 9mm. CEA levels down to 25 from 200 when chemo had just began.

12 cycles of folfiri completed mid May 2017. Last few cycles with a further 20% reduction in dose due to low white blood levels.
CT scan mid May 2017 also. 8 week break from chemo, followed by appointment to discuss results from scan and next stage.

Update mid July 2017..CT scan results for mid May 2017 show stable disease with normal sized distant lymph nodes and same sized spots on liver as in February 2017 scan. Watch and wait approach adopted.

CT scan performed 22nd August 2017 with results on 11th September 2017 showing a new small spot on segment 2 of the liver, all existing liver spots growing slightly (millimetres) and the two distant lymph nodes growing slightly. CEA level up from 20 to 28.

Folfox chemo commenced on 22nd September 2017 after a good 4 month break from chemo. Scan due 4th December 2017 after 6 cycles.

Scan results on 13th December 2017 show folfox is working as mets have shrunk. Largest liver met has halved to 1.4cm :x: 1cm with the next largest dropping from 1.3cm to 0.8cm. The two distant lymph nodes are in the normal range. CEA down to 4.5 from 70 odds when folfox treatment first started. Plan is to carry on with 6 more cycles to end of February 2018.

CEA down to 3.4 after 9 cycles of folfox. Dose reduced for 10th cycle however due to low white blood cell count (1.2) and low platelets count.

Scan on 1st February 2018, after 10 cycles of folfox, shows only one 6mm liver met visible. Two distant lymph nodes in normal range.

11 cycles of folfox completed. 12th cycle not attempted due to first low platelets, then low white blood count. On well earned chemo break until mid May 2018.

CT scan on 17th May 2018 showed no real change from February 2018 scan. CEA level 6.5. Therefore another 3 month break from chemo afforded until next scan.

CT scan on 20th August 2018 showed that the single liver met has increased in size to 10mm. CEA level 36. Decision made to have another 3 month chemo break.

CT scan on 12th November 2018 showed 10mm liver met has grown to 18mm. 3 other liver mets present measuring 16mm, 14mm and 10mm. Another suspicious spot shown on opposite side of the liver. No other signs of the disease.

Return to folfox chemo 1st week in December 2018. Hoping it works again second time around. CEA level 123.

Scan after cycles 12-15 of folfox on 4th February 2019 show stable disease. CEA level 61. Still only 4 spots on the liver, largest being 17mm.

CEA level 36 on 6th March 2019.

Scan on 9th April 2019 after 20 cycles of folfox show stable disease. No real change. CEA level 37. Continuing on with cycles 21-23 of folfox until mid-May 2019.

CEA still 37 on 1st May 2019.

23rd and final cycle of folfox on 17th May 2019. 4 month break from treatment until end of September 2019.

CT scan early July 2019 showed continuing stable disease. CEA 81.

MRI scan in late July 2019 shows liver spot is 3.5cm.

CT scan early October 2019 shows growth in the liver mets. Largest one is now 6.7cm. Others have not grown as quickly. Mother's kidney/ureter is swollen and kidney function a bit abnormal, so she will be having a urology appointment.

Urology appointment has confirmed the cause of the swelling is due to ureter stricture due to scar tissue from mother's bowel resection in August 2016 when she had her sigmoid colon removed. Stent inserted 11th November 2019.

PET scan in late November 2019 showed mother's cancer is contained within the liver and was not causing the trouble with the ureter blockage.

Next stage for treatment we hope is SIRT to treat the liver mets in January 2020. Funding on the NHS has been secured. A few pre-radiation test to undergo in early 2020.

SIRT performed on the NHS on 15th January 2020. This targeted cancer on the right side of the liver where the majority of it was. Some cancer is present on the left side and this may be tackled with a second go of SIRT at a later stage.

Whilst performing the angiogram the week before SIRT a small cancer met was discovered in the lungs. It is millimetres and will be monitored with a scan 4 weeks after the SIRT.

SIRT performed on the left hand side of the liver on 11th February 2020.

CT scan on 11th March 2020.

CT scan review on 23rd March 2020 has shown that the SIRT has unfortunately not worked. The cancer on the liver has continued to grow with the largest met on the liver being 9.5cm. The use of lonsurf or chemo with a possible top up of Avastin was discussed, but deemed very risky in midst of the coronavirus pandemic. Further appointment scheduled with oncologist in 8 weeks.

At meeting with oncologist on 18th May 2020 my mother has been given the option of Lonsurf, subject to good kidney and liver function.

Baseline CT scan done on 27th June 2020.

Ureter stent replaced 1st July 2020.

Meeting with oncologist on 6th July 2020 confirms that mets on liver are growing as per the CT scan on 27th June 2020. No largest met dimension was provided. Strange thing though is that CEA was 1453 prior to SIRT in January 2020 and on 18th May 2020 was 729. Subject to bloods lonsurf chemo will commence on Friday 17th July 2020.

CEA level 866 on 6th July 2020.

2nd cycle of lonsurf delayed by a week in order to have a blood transfusion on 13th August 2020. Dose of lonsurf lowered for 2nd cycle.

Extra week off lonsurf required before 3rd cycle due to low white bloods cells.

CT scan at the end of September 2020. Awaiting results.

Confirmed on 7th October 2020 that lonsurf has not worked as hoped. Progression in the liver, lungs and distant lymph nodes. Right side of the liver has been completely taken over by the cancer. Bilirubin levels are high at 34. Suggestion that a stent may be required, but this was rejected as it can be a tricky operation and can be uncomfortable. CEA is 1200. No further treatment available. I suggested rechallenging with folfiri as it has been over 3 years since it was used, but it was knocked back as cancer progressed 3 months after being off it. Mitomycin C and cap were also suggested, but this was knocked back due to its toxicity. Meeting again with the oncologist in 2 weeks.

21st October 2020 - Liver function hasn't changed, bilirubin down to 32 and CEA is 1426. Meeting again with oncologist in 4 weeks.

16th November 2020 - Telephone call with oncologist. Mother has a morphine patch on and takes painkillers for her back pain. Still doing OK and not much change from the October meeting. Appointment with oncologist scheduled in 6 weeks.

9th December 2020 - Taken to hospital due to a bad kidney infection. Blood in urine, nauseous, breathless and pain in stomach which was building for a few days. Intravenous antibiotics for 2 days allowed her to get home with tablet form antibiotics. Tired, not much appetite, drinking fluids, but building up strength again.

14th December 2020 - Telephone call with oncologist. Oncologist will be sending a letter to GP to suggest possible steriod dose to give mother more energy and a better appetite.

19th December 2020 - after a few days of pains in the tummy, breathlessness and not being able to get comfortable at home my amazing mother passed away in hospital with my brother and myself beside her.
She is now free of pain and is up in heaven with her family. Her job on earth is done.