In 2016 at the age of 43 I was diagnosed with my first bowel cancer and Lynch Syndrome. That was 4 years ago and despite the odds I am 'Living very well with Stage 4 Cancer'.
First bowel cancer Jan 2016 (age 43) . Had surgery (high anterior resection) and no further treatment as Stage 1. Oct 2016 at follow up colonoscopy a further cancer was found in the hepatic flexure area . I had all of my large bowel removed (Sub total colectomy and anastomosis) and diagnosed as Stage 3 . Started 'mop up' chemotherapy Jan -July 2017 (Oxalaplatin and Capecitebine). This was a tough regimen but I managed to compete the 8 cycles .... just! It left me with peripheral neuropathy that has never gone in my feet. After a few months I felt great and putting it all behind me and getting back to work when a routine blood test showed elevated liver function. Told it was all chemo related but two months later a routine ultrasound showed liver lesions and an urgent CT scan showed multiple liver and bone metastasis, an adrenal lesion and widespread lymph nodes involvement .
Nov 2017 Devastated. Told I am not curable and given a very poor prognosis and asked to think about having no treatment as my chances were slim in responding. Having no treatment was not an option that I chose to take.
Dec 2017 Started palliative chemotherapy Folfiri and Panitumumab for 12 cycles .
April 2018 - CT Scan after 6 cycles shows an incredible response to treatment. Everything looking a lot smaller in liver with some lesions no longer evident. Lymph mostly normal . Bone mets all looking sclerotic.
July 2018 - CT Scan after 12 cycles reports continued improvement in the liver . Lymph all looks normal. Nothing new in bones . To continue treatment of 5FU / Folinic Acid / Panitumumab with 3 monthly scans . Irrinotecan stopped.
October 2018 -CT Scan after 18 cycles. Stable. Multiple but tiny 'lesions' in the liver. Normal lymph and sclerotic bones - nothing new ! Continue 5 FU and Panitumumab.
January 2019 - CT Scan after 24 cycles. Stable. Multiple but tiny 'lesions' in the liver. Normal lymph and sclerotic bones - nothing new ! Continue 5 FU and Panitumumab.
Unable to have a break from treatment due to arbiatary rules - if I stop for a period I will lose the funding for Panitumumab!
April 2019 - CT scan shows almost complete remission! Continue 5FU and Panitumumab.
July 2019 - Cancer active once more. One liver lesion has grown and one Para-Aortic Lymph node has grown. Time to change treatment. I have had a total of 45 cycles of chemotherapy and targeted therapy (sometimes referred to as biological therapy ). Lots of ups and downs. It has been manageable but I have suffered with severe skin toxicity that has been tough.
Immunotherapy for Lynch syndrome and MSI-H cancers have shown to be effective for some, and has always been my 'Plan B'. However, it is not available in the UK from the NHS for MSI-H cancer at present (currently under review). It is used in the UK for others cancers but is currently suspended by NICE for MSI-H cancer. It is available however in the UK privately but at a huge cost. Thanks to Bowel Cancer UK and networking I established that the drug company that make Nivolumab were offering the drug for free under a 'compassionate use scheme' . My oncologist had to apply. He was skeptical. Two days later my application was accepted and I was delighted and so grateful.
During the work up tests to start Immunotherapy, I was diagnosed with Adrenal Insufficiency. This is the result of prolonged use of high dose steroid creams for the last 20 months while on Panitumumb that caused my skin toxicity. On top of cancer I now have another serious condition.
August 2019 - Started Nivolumab. Two weekly infusions.
October 2019 - Symptoms prompted a MRI of head. Diagnosed with skull metastasis. Another set back. Oncologist unable to confirm if these metastasis had been there since the initial bone spread in Nov 2017 or if this was a new spread.
October 2019 - CT shows liver lesion had reduced in size, lymph nodes all normal, CEA coming down. Good response.
Nov 2019 - Radiotherapy to skull.
December 2019 - CT shows liver lesion has reduced in size further, lymph nodes all normal, bone mets stable, no new disease and CEA 1. Thrilled with the response to Immunotherapy.
March 2020 - CT shows further reduction again in liver lesion, lymph nodes normal and bone mets stable. CEA remains 1. The aim is to have 2 years of Immunotherapy if tolerated and there is no progression of cancer. Minimal and manageable side effects.
June 2020 - CT scan once again shows further shrinkage in liver lesion, everything else stable and nothing new, CEA 1 - very happy with that.
September 2020 - CT scan still showing stable disease and nothing new and CEA 1-2. No shrinkage in the liver tumour but this appears to be common with Immunotherapy and it is very small.
Dec 2020 - CT scan once again showing stability and no new disease. CEA 2. All bone metastasis are reporting to be sclerotic healed bone. The liver has the one remaining tumour that is unchanged and therefore thought to be inactive. The rest of the liver tumours are too small to determine and classify what they are, but again assume they are areas of inactive cancer cells. My oncologist regards me to be be in remission albeit on treatment. I have now had 16 months of Immunotherapy and continue to aim for 2 years on treatment.
Jan 2021 - July 2021 - CT scans have continued to report stable disease. I remain in remission on Immunotherapy. My liver has no active disease and the bone’s are all sclerotic. My CEA remains between 1-2. I have had 22 months of treatment, feel very well, some side effects but they are manageable. The big question is looming. What happens at 2 years of treatment. I believe there is no right or wrong answer as the long term survival data is not there. Are the drugs doing more harm than good ….. that’s the question.
Oct 2021 - Two years of Nivolumab anniversary in August 2021. Planned CT scan, MRI scan and PET scan. All conclude that I have had a complete response and I am in remission. Long term data for how long to give Immunotherapy isn’t yet there. Are the drugs now doing more harm than good? After careful consideration it has been decided to stop the Immunotherapy, considering all the data that is available. For those that haven’t had disease progression at two years are doing remarkably well off treatment.
It’s truly amazing and I never thought I would be here. The plan to closely monitor with 6 weekly bloods and tumour marker and 3 monthly CT scan commence.
January 2022 - 3 months off treatment and the scan results are in.
No reoccurrence of any disease. Truly grateful.