Prostate cancer: part 3
In autumn 2016 after the radiotherapy, my PSA was still decreasing, and Dr Frydenberg took me off Zoladex. At this stage the plan was for me to see Drs Bowden and Frydenberg in turn.
In June 2016 I saw Dr Bowden, and the PSA was starting to rise, so he sent me for a PSMA/PET scan at Bridge Road Imaging across the road from the Epworth. This showed too many newly visible metastases for further radiotherapy, although the two spots found in the first PSMA/PET scan were no longer visible. These new spots were mainly bone metastases, although Dr Bowden said there were some in the lungs.
After discussions between Drs Frydenberg, Bowden and Shapiro I moved on from urology/radiation oncology to medical oncology. Dr Shapiro put me back on Zoladex hoping I would respond again.
By spring 2016 I had not responded to Zoladex (no surprise to me), and Dr Shapiro started me on a course of the chemotherapy drug Taxotere (docetaxel) on 3 November 2016, with another PSMA/PET scan at Bridge Road immediately beforehand. This went for six cycles each of three weeks, through to February 2017. (Lung metastases no longer appeared to be part of the PSMA/PET interpretation.) The infusions were done at Cabrini Hospital in Malvern. Straight after the first one we went to New Zealand for two weeks, which was fairly brave I guess, but apart from a day when I had a bit of a temperature nothing bad happened.
Zoladex implants continued, and I will always have them. I also started on Denosumab (Xgeva) due to the bone metastases. This drug is more commonly used to treat osteoporosis but should help strengthen the bones. It was an injection every three months, done at the same time as the Zoladex implant.
I had another PSMA/PET scan on 14 March at Bridge Road once the chemotherapy had been completed. Jeremy Shapiro never discussed the details of these scans with me, but as I said before there was never any mention of lungs again.
By the winter (2017), docetaxel started to fail, as shown by rising PSA. Dr Shapiro moved on to enzalutamide (Xtandi), another more powerful androgen deprivation drug. At that time you had to have failed docetaxel chemo before the PBS would pay for enzalutamide.
In July we moved from Torquay to Bridgewater, so he referred me to Dr Francis Parnis at the Icon Cancer Center in the Tennyson Centre in South Road, saying that if I was a member of his family, that is who he would send me to. So we are still with the A-team.
I continued to see Francis every three months for reviews. The main downside of enzalutamide for me was a nasty headache every week or two, localised to the left side of my head.
In mid 2018 he had me screened for a trial of a PARP inhibitor (olaparib) that required subjects to have BRCA1/2 gene defects but did not qualify.
I also did not qualify for the phase II clinical trial of lutetium-177 against cabazitaxel (the TheraP trial, run out of Peter Mac in Melbourne) as my PSA was never high enough before they stopped recruiting.
Ultimately by spring 2019 my PSA started rising fairly sharply as enzalutamide started to fail.
So Dr Parnis then moved me on to more chemotherapy, this time with cabazitaxel. I had to take the steroid prednisolone daily as well.
The first cabazitaxel infusion was on 17 September, in the Icon Centre in South Road. The initial plan was for twelve cycles of three weeks (12 cycle plan is a PBS requirement). PSA at the start had gone up to 48.
This drug was a lot easier to tolerate than docetaxel, so in truth there was no firm end to this. After eleven cycles the PSA was down to 16 and still decreasing.
Ultimately I had 25 cycles, and was still responding reasonably well when we had to stop the treatment due to the development of peripheral neuropathy.
During the time I was on cabazitaxel, I had a couple of other issues. In June 2020 I had a difficult cycle, with severe shortness of breath and dizziness. I was getting puffed out walking around the house! On June 25 I saw Francis, who postponed the chemo and sent me downstairs to Dr Jones the scanner for a CT scan with PA (pulmonary angiography). They found blood clots in my lungs! Pulmonary embolism! Life threatening! So he prescribed blood thinners (apixaban), and within a few days I was back to normal and walking around the streets again.
In 2020 I saw a GP about incontinence that had developed since the 2015 radiotherapy. It had reached the stage where I had effectively lost control and something had to be done. Others in support groups had spoken about an artificial sphincter, and that’s what I was after. In July I saw Dr John Bolt at South Terrace Urology and he set things in motion (by the way he was an Olympic sculler for Australia in the 1980 Moscow Games). He had me in for a urodynamics test to see if I was a suitable candidate (I passed).
One of the possible side effects of chemotherapy is febrile neutropenia. This is fever due to a deficit of white blood cells, accompanied by feeling sick with shivers and shakes. You are always told that if you get a temperature of 38℃ or more you should go to Emergency.
Within a couple of days of the urodynamics test I had picked up an infection which elevated my temperature, so I was back in St Andrews, admitted into emergency and there on a drip overnight. Francis Parnis consults at St Andrews and saw me there. None of the doctors has ever admitted that the infection was due to the urodynamics test, but I am sure it was. Never mind.
John Bolt did the surgery at the end of July, fitting a device called an AMS 800 artificial urinary sphincter. It’s a winner for me, although it fails in about 5% of cases.