Martin, 55, diagnosed in 2012 with inoperable pancreatic adenocarcinoma
My name is Martin, I live in Derby with my wife Alison, I am now 55 and I am the father of 3 daughters Lisa 23, Esme 16, and Fern 14. At the time I worked in IT for a local housing association and Alison is a Research Nurse.
It all started one Saturday morning at the end of April 2012 after a particularly stressful few months at work, although with hindsight I should have taken more notice of the change in the colour of my urine and stools over the previous 10 days. Alison looked at me and said, "You've gone yellow you need to get that checked out quickly". I went to the local walk in centre where I was examined by a Nurse practitioner, she took blood and urine and said that my GP would be in contact with the results and that he would arrange for a scan which should happen within 2 weeks. It was at this that point that I realised that she thought I had cancer.
True to the nurse's prediction, my GP phoned me on the Monday afternoon and told me to come in the next day to discuss the results. On visiting my GP the next day, he discussed the possible causes for my jaundice including cancer but also other possible causes. We managed to get an ultrasound scan booked for that afternoon. The ultrasound scan showed a blockage of my bile duct, but couldn't tell exactly what was causing it. On the Thursday morning I had a call from my GP who said he wanted me to have an urgent CT scan and to be admitted to the surgical assessment unit of the hospital that day.
I had a CT scan soon after arriving at the surgical assessment unit, but I was not able to get the ERCP until the following week. The first ERCP fitted a stent to my bile duct but the brushings taken were inconclusive. The following week I had an EUS to do a fine needle biopsy and a second ERCP to reposition the stent as it was not doing its job. The biopsy confirmed the diagnosis of cancer. Following an MDT meeting I was told that surgery was best option, and this would be at the Queens Medical Centre in Nottingham. The surgeon at the QMC was optimistic that the surgery would be successful.
On the 11th June I went into surgery. However on waking up after surgery I knew something was not right, the operation had not lasted as long as expected. This was confirmed the next day when my surgeon told me that they had not been able to remove the tumour as it had grown round my portal vein and other significant blood vessels. I asked the question that everyone hopes they will never have to ask – "how long have I got?" I already knew some of the brutal facts that only 20% of patients make it beyond 12 months and this is what he confirmed, and as it appeared that my tumour was growing quickly, I probably only had six or seven months, and that although chemotherapy was available this could impact on my quality of life.
We decided that we would make the most of my remaining time, and with our two youngest daughters (Lisa just having got her first proper job a year after leaving university) we planned a road trip around some of the USA. At the end of July just as the Olympics started in London we set off on our trip. We visited Chicago before arriving in San Francisco where we stayed a few days before picking up an RV and touring California and the Grand Canyon before dropping the RV off in Las Vegas. We then flew over to Washington DC and after a few days there we drove up to Niagara Falls, then to New England before arriving in New York and returning back to the UK a month after we left, ready to start chemo.
While we were in the US I saw several TV ads for cancer treatment centres in America, so on our return to the UK I looked up the websites to see if they had any treatment options that were not being offered to me in the UK. Although the treatment options seemed very similar I saw the story of Peggy Kessler on the survivors’ page and saw that she had made 10 years and I said to myself if one person can do it then why can't I!
During our time in the USA I had no health problems but within 3 days of getting back to the UK I developed an infection which led me to be admitted to hospital for a few days. This was cleared up but just before I was scheduled to start chemo the infection reoccurred. This was cleared up again and I started chemo (gemcitabine & capecitabine), but toward the end of my first 3 weeks of chemo the infection was back. This time it appeared to be caused by the stent that was fitted in May being blocked and getting infected. So eventually I went back to the QMC to have the stent replaced.
So following a brief period of recovery, during which Alison and I visited the Christmas markets in Cologne, I restarted chemotherapy. After 3 cycles of chemo which I tolerated very well, I was rescanned and this showed that the tumour had remained the same size. I continued with chemotherapy and after another 3 cycles I was rescanned. To my delight the scan showed that the tumour had shrunk significantly, also my CA19-9 tumour marker blood test was now in the normal range.
Since then I have had another 3 cycles of chemotherapy during which my tumour marker has continued to fall. I now have been off chemo for 15 weeks and my tumour has remained the same size and my tumour markers have remained in the normal range, which of course is very encouraging. I am now looking forward with some optimism and looking for treatment options that will help me to meet my target of being a ten year survivor.
Update September 2015
The last two years have been a bit of a rollercoaster. In late 2013, I was not receiving any treatment as my tumour had gone into a stable state. I was having regular blood tests and checks, with my consultant gradually increasing the time between checks.
I decided that it was a good time to start working again, having taken ill health retirement, Having applied for a few positions I was offered a position with a local authority housing organisation, and although they were a bit taken aback by my medical condition, after going through an occupational health assessment, and after a good Christmas with family and friends, I started my new job in January 2014.
Just as I started I began to notice symptoms of my bile duct blocking again, so had to have my bile duct stent replaced. Following a stubborn infection it was three weeks before I could return to work. On my next visit to my consultant six weeks later my tumour makers had significantly increased. Following a CT scan it was confirmed that my tumour had started to grow again. As my original consultant was moving on to other areas I transferred to a new consultant. At our first meeting we established a very good relationship, andshe recommended I try a combination of oxaliplatin and capecitabine. After three cycles, a scan showed a good partial response to treatment so we decided to continue with the treatment, despite the increased side effects due to the oxaliplatin (numbness in the fingers, sensitivity to cold and greater nausea).
During this time I became aware of Wilko Johnson’s story and although his tumour was a neuroendocrine tumour and not adenocarcinoma as mine is, my consultant sent my scans to be reviewed by the surgical team at Adenbrookes that had removed Wilko’s 7lb tumour. The team were unable to help me as the tumour involves too many major blood vessels. A disappointment but not too much of a surprise, as two years previously it could not be removed. So I continue on with chemotherapy. However after another three cycles of treatment and another scan the results were not good, my tumour had started to grow again.
The consultant suggested that I take part in a clinical trial being run by the Royal Marsden hospital using immunotherapy, which I readily agreed to. After an anxious two weeks I found out that the trail of this drug for pancreatic cancer had been closed due to poor results, I was naturally disappointed but determined not to give up so at the beginning of this year I restarted chemotherapy, but this time back on the initial regime of gemcitabine and capecitabine I had 5 cycles of this treatment with a short interruption due to a bout of reactive arthritis which made it impossible for me to walk for two and a half days, but was cleared up in roughly the same time. After the five cycles I decided to take a break so we could make another big family holiday as it was Alison and my 30th wedding anniversary, Esme’s 18th birthday and Fern’s 16th all within a few months of each other, and the girls wanted to go to Comic Con in San Diego. So we spent most of July driving almost two thousand miles around California.
On our return I had blood tests taken with a view to restarting chemotherapy. However, my tumour markers (CA19-9) were still down at 20 so a scan was scheduled and we were very pleased to see that the tumour had remained unchanged since the last scan, and no secondary’s could be seen. With such good news we have decided to continue watching and waiting before restarting treatment, whilst still looking for developments which may provide a way of reducing the tumour size, and when it does become active again other ways of combating that, so that I can keep my aim of being a ten year survivor.