Diagnosis June 2016 - January 2017 remission
In June 2016 my world turned upside down when I was diagnosed with stage four cancer. A few months after giving birth to my third child, Holly, I started to suffer some lower back pain around the sacrum and right glute. It was dismissed by various doctors, physios and osteopaths as post-pregnancy back pain and I was given exercises to strengthen my core as well as prescriptions for anti-inflammatories. When nothing improved, I went for an MRI where they found a small spinal fracture in the sacrum and a large cyst nearby. Trying to understand the fracture, they asked me if I had fallen on it or suffered any trauma. I hadn't. The radiologist thought the cyst was in the ovary and looked benign, referring me to a gynaecologist. She performed an ultrasound and agreed on its location and nature, but said it would have to be surgically removed and checked for anything suspicious. I was then referred to a gynaecological surgeon who repeated the ultrasound externally and internally and concurred with the above, that it looked ovarian and benign. Surgery was booked for the following day.
In fact, when they operated, the cyst was neither ovarian or benign. It was a tumour in the retro-peritoneum, an abdominal cavity behind the peritoneum, and unfortunately malignant. Being told this news as I am came round from the general anaesthetic turned this into the second worst day of my life. The worst came a few days later.
I was then taken for a full body PET CT scan to see if the cancer had spread. They thought this unlikely as the tumour had appeared well contained. They were wrong. In fact it had spread to the lungs where there were 15 nodules, to the liver where there were 5 lesions, and to the bone where there were four metastases. It was the cancer entering the bone which had weakened it and led to the fracture. So, including the tumour removed from the retro-peritoneum, there was a total of 25 tumours across my body. Stage 4 cancer.
However what wasn't clear at this point was the primary source of the cancer, which can normally be identified to help direct treatment. I had an endoscopy and colonosopy to to rule out the stomach and colon. Both were negative. The tumour removed in surgery was sent to the labs for pathology, and blood tests were run, with the highest tumour marker levels found in my C.E.A and CA 19.9 which indicate gastro-intestinal and pancreatic/bile duct cancers respectively. We sought opinions in Hong Kong, Canada, Germany and the U.K, travelling to the latter carrying the "block" (tumour cells removed from my body, contained in paraffin wax) with us, so that the Royal Marsden Hospital could carry out their own pathology. Despite these efforts, no doctor could confirm the primary with 100% certainty, but bile duct was the conclusion with this type of cancer known as cholangiocarcinoma. Their second guess was cancer of the retro-peritoneum, which is treated in the same way as ovarian cancer. The Marsden's molecular genetics' team carried out genomic testing (next generation sequencing) on my tumour cells to find out that I have highly amplified EGFR (30X), which we could target at a later date. There was also a mutation in TP53 which is very common in cancer patients, but currently untreatable by conventional, FDA approved methods. Niclosamide, I would later learn (in the repurposed world) may be beneficial...
The irony was how could I, the world's biggest hypochondriac who gets every single ache and pain investigated, be walking around with stage 4 cancer and not know about it? Well, unfortunately it's typical of bile duct cancer to go unnoticed until it reaches the advanced stages. It is usually incurable once it has spread from the original site, with surgery to remove the tumour only offered to those caught at stage 1, where there has been no spread. However, as it's often symptom-free until stage 4, when it has travelled to other major organs, cases of curative surgery are rare, as even after surgery, there is a very high risk of recurrence. Once the cancer has metastasised to other parts of the the body, as in my case, there is no cure for most cases (exceptions being two indiviuduals I have personally met who both tested positive for MSI high/high Pd-1/high TMB whose stage 4 cholangio has been cured by Keytruda).
Chemotherapy is usually the first line treatment for advanced cholangiocarcinoma, which I did every 2 weeks for six months from July to December 2016 in Hong Kong. First however, I went back into hospital to have a port inserted under general anaesthetic. This is a silicon implant under the skin near my right collarbone which connects to a vein and facilitates injections, blood taking and medications. I sometimes see my friends looking pitifully at this port, if my clothes expose it, with some asking me if I can ever get it removed or wondering if it annoys me. In the grand scale of stage 4 cancer, I couldn't give a flying f--- about having a port and I make no effort to conceal it under my clothes. It hugely facilitates blood taking which is often weekly, and the administration of medicines. It causes me no pain or bother and I don't give it a second thought. Without it, you risk vein collapse from the overuse of veins in your arms, and in my case, since the port was only ready for my second round of chemo, I endured a chemo "burn" from my first cycle where the drug accidentally infiltrated the flesh on my arm, infected it resulted in a swollen, hot arm for 2 weeks that I could barely move and needed antibiotics to shift. I'll spare you the photograph.
My chemo began the same weekend as the insertion of my port, made up of a cocktail of drugs collectively known as Folfirinox which was dripped into me every 2 weeks for 48 hours. The first session took place in hospital while they monitored me for any adverse reactions with the subsequent cycles in the clinic and at home. In the clinic they would administer two IVs, each lasting about a few hours, with the final IV in a "cassette" attached to my port which would drop 1ml into my bloodstream every hour for 48 hours.
Alongside the chemo, I radically changed my lifestyle, which I have detailed in other pages, but in brief I changed my diet to a vegan whole foods one (although then shifted to ketogenic, now more balanced wholefoods plant based), eliminated sugar, swallow around 30 different natural supplements and repurposed drugs every day and have indulge in a huge amount of natural therapies.
The chemo (well something anyway...) worked very well. While my tumour markers had previously been in excess of 18,000 with the normal range (for CA 19.9) below 35, the numbers fell exponentially to reach almost normal levels by cycle 8 of the chemo. At this point I had a PET CT scan which showed there was just one tumour remaining of the initial 25, and even that one was largely inactive. In addition, the spinal fracture had healed and I was no longer in pain. The chemo continued for another 4 cycles, at which point I was scanned again, this time with a PET CT, CT and MRI. Still visible was this lesion in the liver including some satellite lesions. They decided to perform radiofrequency ablation on it on January 15th 2017 at the Royal Marsden in London. Here, under general anaesthetic while lying in a scanner, they inserted a small needle type probe into the liver. Once it located the tumour, it was blast with microwaves.
Two weeks later on January 30th, I started to experience some abdominal pain as well as fever. My oncologist suspected appendicitis so instructed a full body CT scan to confirm before operating. In fact, my appendix was fine but I had developed pelvic inflammatory disease, treatable with IV antibiotics during a 5 day hospital stay. More importantly, the scan showed no cancer in my body, marking the beginning of my first remission, a point noone thought we would ever reach! Being given this news on the morning of my 40th birthday was by the far the best present I could have received!
Unfortunately, the cancer returned in 2017, the updates since which you can read here: