March 2019 - Bad news after cycles 2 to 4

The second cycle happened on the 5th March and it started with a shock. Jane and my old friends Steven and Vicki were also there. Steven, Vicki and I both worked together during the first few years of our careers, we became very close friends and remained so ever since.

Before initiating each cycle, the nurse in charge has to take a blood test to make sure that the level of a number of parameters, such a white cells, red cells and platelets, are fine. The blood test also allows for the monitoring of the specific pancreatic tumour marker in the blood. This is called CA 19-9 and its normal value in a healthy person is supposed to be below 35-37 kU/L.

When the level of my CA19-9 was tested at the first cycle it was 1781 kU/L. I was hoping that the blood test would provide some (much needed!) good news. This was not going to be the case unfortunately. When the nurse arrived with the print-out of the test, she looked at me sadly before handing over the results. I looked at the piece of paper, and read that the CA19-9 level had risen to a staggering 2981 kU/L, an increase of around two thirds!

I must confess I seriously panicked and asked to speak to the doctor in charge about this. The doctor told me that it was not uncommon to see an increase after the first cycle as time is required for chemotherapy to do its job. The doctor did acknowledge that the increase was on the high side though, so it was suggested that we could plan to have an updated CT scan after 4 cycles instead of after 6 cycles, which was the original plan.

The doctor also pointed out that a possible reason behind a significant increase in the CA19-9 marker was that chemotherapy was actually working particularly well, causing a lot of necrosis in the tumour, which could be incorrectly picked up by the tumour marker itself as a higher level of cancer activity in the body. This did provide some sort of reassurance, although it mostly felt just like a potentially favourable explanation to an otherwise negative finding.

Two weeks later, I went to the hospital again for the third cycle hoping to get my first piece of good news since the whole nightmare started. I felt I could not continue to rely solely on my mental strength and the moral support of family and friends. I needed something tangible and I needed it soon.

Unfortunately, the data coming out of the new blood test did not do the trick, not to any significant extent at least. When the nurse arrived with the results, she had once again a disappointed expression in her face. As she handed over the print-out of my results, I knew I was going to find another increase in the tumour marker. This time the CA-19 had raised from 2981 kU/L to 3187 kU/L. Not a huge rise admittedly, but a further increase nevertheless.

We had a chat with the doctor, who pointed out that the fact that the rate of increase had slowed was a sign that chemotherapy was doing something. I was not particularly encouraged by his words – it was equally possible that the cancer was still progressing inexorably, albeit at a slower pace thanks to the therapy. Not exactly a positive scenario.

I left the hospital in the afternoon with the usual pump attached. I felt exhausted and quite hopeless despite the best efforts of Jane, my parents and my sister to cheer me up.

The arrival of my children back from school had the usual effect of transforming me: in front of them, I was determined to continue to look strong and positive so when they asked me how I was, I replied that everything was under control, that I was feeling a bit tired but otherwise good. I had absolutely no sense of guilt for lying to them as I saw the effect that my reassuring words had on them. They looked relieved and went on with their things.

The fourth cycle went pretty much in the same way as the third one. The tumour marker showed a further increase from 3187 kU/L to 3344 kU/L. Another relatively modest increase, but still no sign of a decrease, as shown in the chart below.

The feeling of hopelessness intensified. Everything was now resting on the outcome of the CT and MRI scans that were planned for the following week.

I would get to those scans with no sign whatsoever that things were in any way under control. So I braced myself for a mentally exhausting week, again with no positive evidence to cheer me up and the feeling that my life could end within a matter of a few months.