This has been my journey on the PC Rollercoaster so far (May 2006)
At the time I was diagnosed, I was living a happy life, and as any other 27 year old, I thought I was immortal. I had a great job abroad, with all the benefits that comes with expatriate life. In October 2005 I started having some back pain, I thought it was because I had just moved, and because I was travelling a lot, flying long haul on economy class – probably I just needed to go to the gym or swim a bit…
In November I became quite ill, I was jaundiced and finally I went to see the the doctor. Since I had just been to Africa, they looked for hepatitis, that came back negative and they told me that the ultrasound scanning showed some suspicious mass on the Pancreas. I had some friends visiting, and they finally convinced me that I should get in the car and join them back to Denmark for further treatment. No disrespect to the Dutch healthcare system, I am sure it is fine, but somehow being in your own country just feels a lot better, especially when waiting for possibly bad news. After multiple biopsies, they were finally able to tell me and my family the bad news. Everyone at the hospital was quite shocked, this does not happen to 27 year olds. Well at least not very often…. My first reaction was, well how will you fix that? I mean if you can transplant hearts and do brain surgery, surely you can fix this! The doctor had to tell us that I was not a candidate for surgery, but that they would offer life-extending chemo therapy. Excuse me – life extending? Then I pretty much fell apart.
I was very eager to start treatment immediately, but had to wait till after xmas, it was probably the worst Christmas I have ever had. The painkillers I had were not working, so I was in constant back pain. I got a stomach infection and threw up non-stop. My entire family was as shocked as I was, we tried to have a normal Christmas, but I just knew that we were all thinking “this may be our last”. More pictures were taken of me than usual; hugs were those magic 3-5 seconds longer than usual etc. Based on how I felt at the time, and if this was the speed of this disease, I was in doubt if I would be there for my sisters wedding in March ’06.
In January ’06 thankfully everything got better, I finally got some pain medication that worked, a small dosis of ‘slowly absorbed’ morphine replaced the 3 other paindrugs I was taking, I started the Gemzar treatment, and got my life re-organised. I had a house as well as all my belongings in another country, but fortunately my employer was fantastic, and they basically organised that everything was packed and shipped back as well as ensured that I contract wise was transferred back.
So far so good, then I just waited for the miracle to happen, and for the doctor to tell me that Gemzar was working, because I was convinced it was. Also as I physically felt good, I was not loosing any more weight and in general felt and looked healthy.
In April ‘06 I got the results of the first round of Gemzar – and what a disappointment that was! It was not working, and the met in my liver had grown from 6cm to 9cm (longest dimension) the tumor in the pancreas was stable. I had to stop Gemzar. The oncologist had discussed my case with the professor at the university hospital, and they concluded that I could try ‘Xelox’. They explained that there was a 50% risk that it was not working, 25% chance that it would stabilise the tumors and 25% chance that it would make them shrink. I was their first PC patient to get Xelox, so they could not really say much about their experiences with this combination for PC, but they had some experiences with it for colon cancer, so they had a fairly good idea about the expected side effects. If Gemzar has side effects of 1 on a scale from 1 to 10, would I rate Xelox at 4 on a scale from 1 to 10. Tougher, yet bearable.
I had to do 3 rounds of Xelox before getting any results, I was (as with Gemzar) convinced that it was working, I felt good, so I concluded that it could not be all that bad, then I would have felt it. As I all of a sudden had plenty of spare time, compared to working 50+ hours per week, had I started to play golf, and actually found that the fresh air and exercise was doing me well, let alone the fact that you simply can not think about PC while playing. Also my sister has taken ‘nursing-leave’ from her job 1 day per week, to spend time with me, so we go golfing together – and when it rains shopping – except for the weeks where I get my infusions.
I was nervous when we went to the onc’s office for the results. My parents and sister were with me, and we were all prepared for bad news, as that was all we had ever gotten in that office – yet hoping for good news. I will never forget May 11th! Not only is that very close to my 5 months ‘anniversary’ and according to some stats the median time from dx to death for PC patients, but more importantly because that was the first time during my illness where the onc had some good news. Xelox was working on me, above and beyond their expectations. The liver met had shrunk by some 20% and the pancreas tumor had shrunk by approx 15% - I can not explain how good that felt! I felt like I could fly – well okay, at least for a few hours until the oxiplatin infusion knocked me out!
I will continue with Xelox as long as it is working, and I am determined that I will fight this to the very end, I know by now, that it is like being on a rollercoaster with ups and downs. I refuse to be part of old statistics (many stats are based on 5-10 year old data) and I pray to God every day to give me the strength to fight the disease, to give all researchers the power to find a cure in time, and to all caregivers of me and others to continue to find the resources to help us all through this.
The picture was taken 3 months after diagnosis at my sisters wedding in March ‘06, it was a great day. We started at 9 in the morning with hair and make-up appointments, and we partied on until 4 am, and I felt great all day and night!