Up Shit Creek

Regular user
Male 41 y.o.

FEBRUARY 2020: Colonoscopy following abdominal pain and passing blood.

MARCH 2020: Diagnosed Stage 3/Dukes C Rectal Cancer. The primary tumour is just over 5cm in diametre and nearby lymph nodes have been affected. There is approximately a 60% 5 year survival rate according to my consultant.

APR - JUN 2020: Oral Capecitabine chemotherapy & photon beam radiotherapy to be received daily over six weeks. The aim is to shrink the primary tumour & regional lymph nodes to make surgery more manageable.

JULY 2020: CT, MRI & PET scans reveal lymph nodes in the radioactive field have reduced in size as planned, and the primary tumour has remained stable.

However, there is widespread lymph node metastases with a BRAFV600E mutation found. Staging changed to Stage 4/Dukes D. My consultant said surgery was no longer in my best interests and would not present as a possibility in the future. I receive a very bleak prognosis: if I respond to Folfirinox chemotherapy, I should expect to live 9-12 months. If I do not, I should expect to live 6 months. 60% of people respond to this chemotherapy regimen.

AUG - NOV 2020: I'm referred to the palliative care team at St Gemma's Hospice. 12 cycles of Folfirinox scheduled. Following a huge amount of independent research, and against my consultant’s advice, I also begin an intensive integrative regimen* of supplementation, organic whole food, green smoothies and juices, meditation, visualisation, breathing exercises, hyperbaric oxygen and PEMF therapy.

NOV 2020: CT scan reveals a partial response: My primary tumour is stable, and there is some reduction in the size of the affected lymph nodes. However, I've been experiencing severe side effects from Folfirinox including kidney pain, vomiting and nausea, migraines, heart palpitations, rashes, hair thinning, shortness of breath, fatigue, depression and neuropathy. We agree to have a break after 8 cycles until the cancer becomes active and starts to grow again. I'm informed that 50% of patients’ cancer becomes active within twelve weeks of completing the 12 week course. I continue my integrative regimen.

JAN 2021: Scans show stability. Integrative regimen continued. I begin developing late-onset peripheral neuropathy in my fingers and feet.

MAR 2021: Scans show stability. Integrative regimen continued. The peripheral neuropathy has become severe. Walking is now very painful: the sensation varies from a feeling of pins and needles, to electric shocks to a burning pain.

MAY 2021: Scans show stability. Integrative regimen continued. My consultant decides to reassess my case and brings it to his MDT (multi-disciplinary team) due to the unexpected stability of my cancer. It has not progressed as expected and he wants to explore what further interventions might now present as a possibility.

JUNE 2021: I am referred to a surgeon who says he is willing to operate. This despite being told 11 months ago that surgery would be an impossibility. He says that it will be ‘massive’ open surgery, and that he wouldn't put my body through it if he didn't think it could be curative. It is a relatively rare surgery to receive, and there is no body of data from which a meaningful prognosis can be drawn.

JULY 2021: I receive open surgery. The primary tumour is removed; 19 metastatic tumors are removed; lymph nodes are stripped of the central vein and artery running down the centre of my body; nerve tissue is removed and a temporary ileostomy is fitted. It is a 'low join' and 90% of my rectum has been removed, so they will have to test how it has healed in 6 months to determine whether or not it can be reversed. My prognosis is deemed 'unclear' at this point, but survival is mooted as a genuine possibility. I spend over three weeks recovering in hospital. It is an acutely traumatic recovery.

SEP 2021: First scans post-surgery show stability. Integrative regimen continued.

NOV 2021: Scans show stability. Integrative regimen continued. The neuropathy has remained very difficult throughout, and I have tried a number of orthodox and integrative regimens to no avail. I travel to Italy to try Scrambler Therapy and have a 60%+ reduction in pain.

FEB 2022: CEA blood test reveals a level of 2 (below anything that indicates a concern and the necessity of a scan). Next scan scheduled for June 2022. Integrative regimen continued.

MAR 2022:
*** I've had no chemo or radiotherapy in almost eighteen months now. Pretty extraordinary given my initial prognosis. I'm currently very active, working full-time and feeling good. Continuing my integrative regimen. One day at a time. Who knows what comes next.***