John, age 48 when diagnosed, inoperable adenocarcinoma of the body of the pancreas

John had always been fit and healthy. He had never smoked and only really drank alcohol when he was a student. He used to cycle from home in Derbyshire to go to college in Oxford, he had cycled round Ireland, he had rowed for college for fun, played competitive squash and enjoyed hiking. In the 1990s he started getting tired and depressed. In autumn 1999 he had a bad bout of diarrhoea whilst attending a conference in St Jean de Luz and rather than seeing a doctor went hiking in the Pyrennees. At home it was found that he had campilobacter infection.

A month or so later he started having heart palpitations and complained of numb patches on his skin and twitching nerves in his calves. Over the next year he saw a couple of neurologists who could find nothing wrong. We thought maybe it was stress as he was battling to get government funding for his division at work. He started to get concerned about problems with his vision and was referred to an opthamologist who found nothing wrong. He started to get back pain but didn't mention it thinking it was just postural problems. Then, just before going on a long awaited holiday of a life-time to New Zealand to visit his sisters in Feb 2001, he started to get abdominal as well as severe back pain. This pain increased during the vacation and stopped him sleeping. It was more painful when lying down so he started sleeping in a chair when we got back to the UK 4 weeks later.

On return to the UK he saw a locum GP who thought it was irritable bowel syndrome and referred him to a gastroenterologist and eventually also for an ultrasound. It was also found that he had helico-pylori infection but that was never treated. The gastroenterologist also thought it was irritable bowel syndrome and arranged for an endoscopy and a barium enema test which were clear. However when the ultrasound was done in June 2001 a large pancreatic mass was found in the body of the pancreas. A Fine Needle Aspiration was attempted but missed the tumour and came back negative. John was only 48 years old when finally diagnosed with pancreatic cancer.

John was referred to a surgeon and an angiogram was performed. This showed involvement of the veins and he wouldn't operate. Another FNA was performed which came back positive showing cells consistent with adenocarcinoma. At this stage John was in severe pain, especially when lying down, and on about 110mg MST bd. The surgeon referred John on to an oncologist for chemotherapy. John had 6 months, ie 8 cycles, of gemcitabine and cisplatin day 1, gemcitabine day 8 and repeat at day 22. During that time the size of the tumour and CA19-9 markers were reduced (but not normalized) and the pain was almost removed and he reduced to very low dosage MST.

He returned to work during his treatment with the gemcitabine/cisplatin and an almost near normal life. His escape from the cancer was to go for long walks or drives in the surrounding countryside, especially the Chilterns.

After the 8 cycles of chemotherapy he was reassessed for surgery with another angiogram which unfortunately showed that the portal vein was now occluded and the tumour was still inoperable. We took the opportunity to go for a lovely holiday with perfect weather in a cottage in Dorset for a week. This included long walks along the coastal path. Two further opinions and a Pancreatic Cancer Masterclass confirmed that as there was unlikely to be any benefit from surgery in terms of longevity of life and that the coelic axis was encased.

John was then referred for possible chemo-radiotherapy but an enlarged lymph node was noted and radiotherapy was ruled out. A laparoscopy confirmed the involvement of veins and local lymph nodes but the liver and peritoneum appeared clear. The pain and CA 19-9 markers were increasing again a year after the first ultrasound so chemotherapy with gemcitabine and cisplatin was restarted. A second referral for radiotherapy was obtained and treatment was offered but we decided to see if the chemotherapy could hold the cancer at bay again. However the CA19-9 stabilised but didn't decrease towards normal so after 5 cycles of gemcitabine and cisplatin it was finally agreed to try the radiotherapy after a months gap. We took the opportunity to go away for an idyllic weeks walking holiday in south Devon to celebrate John's 50th birthday. The weather was perfect but it wasn't entirely idyllic as his red blood counts and platelets had dropped to their lowest ever values just before we went away so he struggled slightly in the walks and after talking to our GP by phone we decided to take a trip to Torbay hospital to get them checked again. Luckily the results were better so that I could relax for the rest of the holiday. Then a course of daily radiotherapy with weekly bolus 5-Fu was undertaken for 5 weeks. After this course there was further reduction in pain, tumour size and CA19-9 markers.

The chemotherapy had been harder to cope with than the first time but there were hardly any problems at all coping with the radiotherapy. John worked throughout all this treatment. He regularly went on 10 mile walks, mainly in the Chilterns, with family and friends. He also played cricket for his division during the summer. We even went on a punt party in Oxford with his work colleagues and he punted us up and down the Cherwell.

After the radiotherapy they didn't want to start any further treatment and suggested a CT scan at the beginning of March 2003. So we then did something that I had never dreamed would be possible - we went on a second holiday to New Zealand for 3 weeks in Feb 2003 and John was able to enjoy the holiday almost as if he had never been ill. I think his only medication at this stage was medium dosage MST about 30-50mg bd and creon. He did all the driving as we toured around the north east of the North Island, went on long and strenuous walks up the coastal peaks, went on a boat trip to walk on a volcanic island and ate full and healthy meals. Unfortunately the pain was beginning to return.

As soon as we got back to the UK he had another CT scan. His CA19-9 has risen and the scan showed some enlarged lymph nodes away from the pancreas and some suspicious areas on the liver. However it was thought the change in the liver was just fatty deposition due to the chemotherapy.

It got complicated trying to arrange any further treatment. No-one really knew what to do for someone who had survived almost 2 years without surgery but with cancer that kept returning. There were offers of further gemcitabine but without cisplatin as it was thought he wouldn't tolerate any more, continous infusion 5-FU, exploratory sugery but with advice that it wasn't likely to be any benefit, or compassionate use treatment with the thalidomide analogue Revimid CC5013. There were delays in getting anything set-up and John didn't really want to think about further treatment but also didn't want to just give up and have no treatment. He was keen to try the Revimid but there was a delay in getting approval so he started continuous infusion 5-FU as that was thought to have less impact on the his bone marrow than gemcitabine.

Unfortunately he had started getting sudden drops in blood counts. He required a transfusion just as he started the 5-FU (5 months after the last treatment of radiotherapy) and then immediately developed jaundice and had a metal stent inserted. He had lost his appetite and some weight due to the jaundice. However they restarted the 5-FU but his abdomen was getting larger. He got pain in his lower right calf and eventually doppler ultrasound showed a blood clot. He decided to stop the 5-FU due to side-effects.

John decided to try the Revimid. Unfortunately it was too late and he passed away 2months after starting the daily course of Revimid. During the last 3 or 4 months we were concerned about his enlarged abdomen. It was thought to be ascites but as John was tolerating it it was decided not to drain it. However a CT scan at the end of August 2003 showed that there wasn't much ascites and it was mainly tumour in the omentum. That scan also reported a mass on the right lobe of the liver.

We don't know what caused the cancer. It may have just been random chance. His mother died of cancer, probably leukemia or non-hodgkin's lymphoma, at age 52. It may have been due to pollution in the sea off south-west France, it may have been related to the fact that he was a physicist and had worked at or next to a nuclear research facility, it may have been due to stress, it may have been due to exposure to chemicals such as insecticides or fungicides.

It was a hard 2 years but the treatment gave us time that yielded many, many wonderful and unforgettable moments that were worth a million dollars. We were able to meet up with all his family, including a new niece, and friends and have 3 perfect holidays plus a short trip walking in the Peak District. It strengthened our love and my and others admiration for him and, something that I never dared hope for, we were able to celebrate our 20th wedding anniversary.

As well as the treatment John received excellent palliative care support throughout the 2 years from the consultant at the local Sue Ryder Care Home and his GP. He had quite a lot of weight loss after the first assessment for surgery. We were never sure whether that was purely the cancer of the fact that he mistakenly cut all fat out of his diet for a while. However after restarting a normal diet, starting to take the pancreatic enzymes, Creon, with every meal, starting chemotherapy and supplementary drinks of Fortisip and Maxijul he regained most of the lost weight and he maintained it for most of the following 2 years. We made sure he ate well with a diet of mainly fish, chicken, lots of vegetables and fruit and with nuts and raisins always available for snacks. He also drank lots of soft drinks but struggled with water so it normally had squash or gatorade added. We even tried juicing for a while. For 21months he did very well and life was almost normal apart from the treatment, we even began to think he had been misdiagnosed. However the last 6 months were much harder and a constant battle with pain and other typical symptoms of pancreatic cancer so he ended up with a vast cocktail of painkillers and other drugs and daily Fragmin injections for the blood clots. He also started drinking Prosure to maintain/regain weight after the jaundice.