Claudie, 60 - diagnosed with operable adenocarcinoma in 1996 - cancer returned in 2006
My story starts back in 1996 when I had an operation for a benign cyst on my liver. However, during the operation, the surgeons spotted what they thought might be a tumor on my pancreas. To be on the safe side, they removed the tail of the pancreas. Later tests showed it to be cancerous; I was extremely lucky. To catch a pancreatic cancer so early is usually unheard of, but I was fortunate that this operation came at such a crucial time.
In 2003 I developed diabetes. This was found to be caused by failure of the remainder of my pancreas due to a new cancer (unrelated to the original). The consultants believed that this was a unique case. After complete removal of the pancreas, by a Whipple procedure, and a course of chemotherapy I made a complete recovery.
In 2006 I started to experience some problems, including high fevers and jaundice. Further tests revealed a metastasis cancer around the bile duct. I was told at that time that there was only a very small chance (<2%) that any further chemotherapy would have any effect at all, let alone reduce the cancer. However, it worked! The cancer markers reduced back to normal levels and a CT scan confirmed a significant reduction in cancerous tissue. Over the next year the cancer regrew and caused a bile duct blockage resulting in the need for a stent. This worked for a while but a second stent was required. This worked for even less time and a "covered" stent was fitted. It is still possible for the duct to become blocked for other reasons and so a permanent drain tube was fitted, which also allows for easy access should a problem occur. Late in 2010 a second tube was required to assist drainage.
During the period from the insertion of the first stent I have received three further courses of chemotherapy and, in 2011, a course of Radiotherapy. I'm pleased to say that the cancer is under control and I am able to lead a normal life despite the need for the drain tube which needs flushing every two days and redressing every week (this is something the hospital taught my husband to do). Of course I am now diabetic and have to inject myself several times a day and think carefully about my diet, but I manage to keep it under control.
It's been a tough road at times, but my journey shows that pancreatic cancer is beatable. I am lucky to have an amazing group of medical staff taking care of me. I have also received great moral support from my family and friends over the years, particularly from my daughter who, several years ago with one of her friends, raised money for Pancreatic Cancer UK on my behalf, and all those affected by pancreatic cancer, by running in the Paris Marathon.
First published February 2011
Update from July 2012
After the radiotherapy in February 2011, I was fine until the end of October when I spent a few days in hospital because of an infection and stent blockage. Since then, I have felt unwell with more infections and blockages, stomach pains, diarrhoea and steatorrhoea and, consequently, a loss of weight. A recent blood test shows that the cancer markers are higher and a CT scan shows a slight increase in the tumour around the bile duct.
Fortunately, it is a slow growing tumour and it has not spread to any other organs. At the moment, I am waiting for a referral to see a gastroenterologist and a nutritionist as I need to put weight on and be fit enough to receive more treatment, if any.
My morale is good and I carry on leading a normal life even if it is a little more restricted. Eating out, planning holidays require more thoughts now but it is not a major problem.
I have a complete trust in my medical team and I believe that together we can carry on fighting the disease and stay on the top of it.
Update from March 2014
For the past year and a half, life has been a bit of a roller coaster with lots of ups and downs and more treatments. I am still in good spirit ( at least most of the time! ) and I'll do anything in my power to be on top of the disease.
In September 2012, the cancer markers were on the rise again and my weight kept falling down despite me eating reasonably well. The fact that I cannot process food efficiently anymore was one of the factors in that happening. I saw a nutritionist and the gastroenterologist suggested that I should take additional pre-digested drinks to supplement my normal meals and help me put on sufficient weight before starting yet another course of chemotherapy. As the drinks were supposed to taste horrible I was fitted with a gastro nasal tube linked to a pump to feed me overnight for 10 hours with one litre of food. Needless to say that it was rather inconvenient and uncomfortable as I had to sleep in a half seated position and I had to carry the pump and its support each time I got up. I was also sleeping in a different room from my husband in order not to disturb him. I am pleased to say that I have now discarded the gastro nasal tube and take the pre-digested drinks by mouth. They do not taste bad at all as I was made to believe. In fact, they taste rather nice; one is orange and pineapple and the other is summer fruit flavour. I don't really know what all the fuss was about !? Anyhow, after a few weeks of taking the drinks, my weight went up and I was able to start chemotherapy again on December 10th 2012. It was then my 5th chemo treatment.
My oncologist decided on a new drug called Irinotecan, usually used to treat cancer of the colon and rectum but which has been known for good results with pancreatic cancer. Since it was not licensed for that kind of cancer, she had to put a good case in my favour and fortunately she was successful. I am very grateful to her and her commitment.
I responded well to the treatment without too many side effects. I didn't lose my hair as expected because I wore an ice cap during each session. I bought a wig just in case but I didn't have to wear it after all. My hair became thinner, that's all. However, as the treatment went along, I became more and more prone to infections as my immune system was lowered. The treatment was then stopped as it would have done more harm than good at that point. I had 13 sessions instead of the 24 planned. Nevertheless, a CT scan and a blood test showed that the treatment had been very effective and the cancer markers were back to their normal level :-). Very impressive indeed!
The few months which followed were great and I was getting better all the time so we decided it was time to go and enjoy a holiday in France to see my family and attend a friend's wedding. For the first time, I thought I was going to have a problem free holiday..... But it wasn't going to be! Due to the extreme heat in July/ August 2013, the dressing protecting my drainage tubes got unstuck and one of the tubes was pulled out by 5cm. My husband, whom I totally rely upon and whom I am also very grateful to, managed to fix the problem temporarily. Two days later we were back in England and I went to hospital for the radiologist to sort everything out.
I have to say that after that episode, I've had lots of ups and downs with stomach discomfort, high temperatures due to more infections, tiredness, in fact similar symptoms to those I had in the past. Blood tests and CT scans were carried out at regular intervals showing a slight change in some lymph nodes and a continuous rise in the cancer markers.
On February 7th 2014, I started to take Capecitabine chemo tablets: two weeks of tablets and one week of rest. I'm on my 2nd cycle now and feeling reasonably well with the treatment so far with no major side effects apart from slight nausea at times, tiredness occasionally and sore eyes. After three months, I'll have another CT scan to assess the situation and if I am responding well to the treatment, I'll carry on for another three months.
Once again I hope that my 'little weapons of mass destruction' as I call them will reach their target and will destroy, if not all, most of these nasty and annoying cancer cells. In the meanwhile I have to keep hopeful and positive as it is the only way forward :-)!