My journey so far with Cholangiocarcinoma

One afternoon at work, I went to the bathroom and noticed my urine was the colour of stewed tea. I went to see my GP after work and was confirmed to be jaundice with no other symptoms. A blocked bile duct was diagnosed. I was referred to a GI and an ultrasound showed a stricture of the bile duct. Gallstones were ruled out, so it was either a cyst or a tumour …

Jan 2018: One afternoon at work, I went to the bathroom and noticed my urine was the colour of stewed tea. I went to see my GP after work and was confirmed to be jaundice with no other symptoms. A blocked bile duct was diagnosed. I was referred to a GI and an ultrasound showed a stricture of the bile duct. Gallstones were ruled out, so it was either a cyst or a tumour.

Feb 2018: Stent was inserted in the bile duct via ERCP. The procedure caused a lot of pain in my abdomen and back. The GI said was just residual wind, but I was in so much pain I couldn’t sleep and started to hallucinate. I was admitted to hospital with acute pancreatitis for 10 days. I had a CT scan and MRI which showed the formation of a 2-litre pseudocyst on my pancreas. The blockage of the bile duct was suspected to be cholangiocarcinoma and a Whipple surgery was recommended as it was extrahepatic (or distal)

The Whipple procedure could not be performed until the necrotic pseudocyst was removed.

April/May 2018: Multiple procedures were performed to remove the necrotic material. Biopsies, CT & PET scan & MRI could not confirm a tumour nor detect cancer. However, the stricture was very tight, and it was not possible to insert additional stents. “Brushing” finally detected abnormal cells at the end of May.

June 2018: Performed a 10-hour Whipple surgery. A few minor complications, in hospital for 1 months. The histology report came back Graded as Stage 3.

August 2018: Started a 6-month course of Capecitabine. I was initially very reluctant to have any form of chemotherapy. My father, mother and sister had all died from various cancers and having already suffered a lot over the previous 9 months, plus witnessing my family members suffer with chemotherapy, I couldn’t face more suffering. I explained this to the oncologist he recommended Capecitabine and gave me a copy of the BILCAP report. With this and the fact it was taken orally, I relented. I did a baseline PET & CT scan. After 3 months blistering appeared on my hands and feet, making walking very uncomfortable. We found a TCM remedy which had been trialled with Capecitabine and it helped me tremendously with the side effects

March 2019: Follow-up PET & CT scan showed 6 cancer tumours/hotspots all over my torso. A prognosis given as 2-4 months and the oncologist recommended I check into a hospice and “put my affairs in order”. I wasn’t ready to give in at this stage having already endured so much so I asked if we could still carry on with a different chemo regime, despite the grim outlook. He agreed and I was switched to Gem/Cis + TS1 (a Japanese Capecitabine-based drug).

June 2019: My health declined dramatically. I lost a significant amount of weight (I stopped weighing myself at 65 kg), I was very weak and could only manage a few steps. I went to the hospital where they gave me massive infusions of magnesium, potassium and calcium supplements (all depleted) and 2 blood transfusions. I was infused from 8 am to 6 pm for 4 days but felt the benefits immediately. TS1 was dropped and I continued with Gem/Cis.

August 2019: All but one tumour disappeared, and I regained some weight.

November 2019: Made an appointment to see a specialist at UCLH privately for a second opinion with a view to try to get onto a trial drug. I had sent some of my tumour to Foundation One for molecular profiling, but the results came back with no actionable mutations. Enrolled in trial of M7824 for people with no actionable mutations.

Feb 2019: Suffered side effects of very stiff and sore joints, a shingles-like rash on my torso and lost vision in left eye due to the reaction on pre-existing glaucoma.

March 2019: My kidneys were impacted by the trial drug, and I had to come off trial. A 4-month course of maximum strength steroids reversed the damage to the kidneys although some scarring remains.

Feb 2022: Tumour has shrunk by 40% and still not receiving treatment. Continuing with 3 monthly scans.