Thursday, June 26, 2014

ARN-509 - the trial

Well, Bev and I were off to North Shore Hospital again today and submitted my application for the ARN-509 Trial. I was taken all through the 16 page documentation again and found no reason why I should not at least let my name go forward. I understand I'm the first in the region.
So now I go off Bicalutamide immediately and can expect a curious drop in my PSA before it goes up again. A couple of PSA tests in the first half of July should reveal this pattern. There will then be whole body screening to ensure that the cancer hasn't already moved into places where I really don't want it.
All being OK, my application for the trial will then be submitted. Perhaps I will be able to begin swallowing eight pills a day some time in August. Once started, I have two chances in three of being on the medication rather than the placebo. That's better odds than many trials which are often 50-50. And before and during the trial I will get some sophisticated diagnosis and at least learn a bit more about what's going on inside me.
And to my surprise, I learned that travelling expenses will be paid for me to attend clinics. I believe this trial of some 1200 men worldwide is costing several million dollars and that one donor has put up half of the amount raised. I take my hat off to all who contribute for cancer research. Defeating cancer is a distant goal but it's little steps along the way that are helping. I hope I get to play a small part in the journey if only to justify the time and commitment being put in by medical staff and others to make the whole programme possible.
I'll try to keep this blog up to date with progress.

Tuesday, June 24, 2014


I'm enjoying the cooler winter weather. It's so much easier to control the massive ups and downs of intense hot flushes. A quick shift to a cooler part of the house or a short burst from a nearby fan and it's all over in just a minute or two.

And if I time it right, I can get out of bed on these colder mornings while in the grip of a heavy hot flush. By the time I've got into the shower or into my clothes my temperature has gone back to normal and I haven't had that first chill that hits most people when getting out of a warm bed. There have to be some benefits in this wretched disease and the unpleasant side effects of its rather severe medications.

We're going back to the specialist this week for a follow-up on my first appointment at our new hospital. We'll be discussing my application to go on the Phase III trial of a new drug for people in my situation. Interesting.

Friday, June 20, 2014

Change in Emphasis?

I've added Prostate Cancer to the title of this blog. That seems to be likely to be the main theme from now on.  

This morning I read that Oscar Wilde's Lady Bracknell observed "health is the primary duty of life". I don't agree with her priorities but my health is becoming fairly important for me these days. That's why we have moved to this splendid villa in the welcoming community of Hibiscus Coast Retirement Village .

But of course we also may be moving into new challenges and possibly new routines as far as my health is concerned. That will continue to be something of a priority for us and I have been tidying up the "end of life" documents I prepared a couple of years ago.

Meanwhile, we have a lot of living to do and in a surprisingly busy life, this blog may be a way of keeping friends and family in touch with our adventures. 

Thursday, June 19, 2014

Ups and downs with prostate cancer

After reading sixteen pages of information - neither very well edited nor well presented, actually - we have made a firm decision that I will apply to go on the ARN - 509 Trial.

But we realise that the selection process may disqualify me, so there's a lot to think about. On the one hand, it's exciting to think that I will at least get some sophisticated diagnostic work. There will doubtless be something to learn from the process, too. On the other, we are naturally thinking more about the situation than usual and we could easily get a bit anxious about the outcome.

And, of course, as soon as I begin to think about it all, I feel odd aches and pains all over my body. I've boasted for twelve years that I haven't got an identifiable symptom of cancer. Now I think I can feel them several times a day!

So we have plenty to think about if we can squeeze in the time between editing and re-publishing my book of short stories, co-writing a book on Russell Methodist Church, installing a new tow coupling and shroud on the caravan and practising for the Village Barbershop Chorus on Saturday. We are both having to keep a diary of everything that we are fitting into our lives at the moment. I haven't run a decent diary for more than a decade - as some of our friends in Paihia found out when I failed to show at a meeting. It's a busy and interesting life...

Just in case anyone is wondering, the proper name for the stuff is 4-(7-(6-cyano-5-(trifluoromethyl)pyridin-3-yl)-8-oxo-6-thioxo-5,7-diazaspiro[3.4]octan-5-yl)-2-fluoro-N-methylbenzamide  Sounds like it should be good for something, doesn't it?

Tuesday, June 17, 2014


Yesterday I gave another blood sample. I have them every three months, to monitor the progress of my prostate cancer. Then I have another routine Zoladex implant. It's all become quite routine over the last ten or more years. 

But yesterday's was only two weeks after the regular quarterly test. It’s a different test and is part of the screening process to quality to join 1200 men worldwide on a trial for the a new drug. But ARN-509 has its limits. If my cancer has spread to other parts of the body, for instance, I probably won't be accepted on the programme.

So blood tests and scans are being done. If I get on the trial I have a two-thirds chance of getting the drug rather than the placebo. Meanwhile, even if I'm not accepted, at least the evaluation process will tell me a bit more about what’s going on.

It’s dozen years since I was diagnosed with a fairly vigorous cancer and I am amazed that I am still around. It’s even better that, after all these years of soaking up quite large amounts of public Health money on Zoladex, I may now be able to make a small contribution to research. So we've filled in the forms…. 

Friday, June 6, 2014

Lost Opportunity?

I went to chapel on Thursday. Not so much because I would have chosen to attend a mid-week service but because I was importuned to play the organ.

There were a couple of really interesting things about the gathering in the tiny room. Only about eighteen attended, out of some 350 people who live in the Village, so it obviously doesn't seem to meet a huge need. And they were seated in a narrow space with a centre aisle and only two chairs on each side.

For most of my ministry I have been railing (if you will excuse the pun) against "railway carriage seating" in churches - rows of pews all facing the same direction. But no church I ever visited illustrated the point more clearly than the village chapel.

Another service I attended recently had the same layout: there was a central aisle and rows of chairs on each side. Certainly, here there were about four or five chairs aside. But the eight rows were deep, also set in the narrow dimension of the room, probably to face the window and the view. But perhaps to make it feel as much like the proper church as possible.

Sadly, this congregation was forced into this room by the draconian decision of the Methodist Church of New Zealand to lock up their lovely old church because it failed to meet the Church's requirements relative to earthquake risk. And no doubt in that church, all the  people could see of each other was the backs of heads.

But when they had to move out of that church into the comfortable and carpeted lounge at the side, what an opportunity was lost!  Here they could have created an entirely different kind of gathering space. Here they could have provided a place for real meeting, real engagement with each other as well as with the worship leaders.

Among all those who have been administering the ruthless programme of turning congregations out of their buildings, who is helping these refugee congregations to see this as an opportunity for a more vital  kind of Sunday experience?

Another PSA test ...

My quarterly PSA rise this time is twice the average of the last three years of measurable results.  It’s doubled in three months and a few days. Well, one single PSA is not a reliable guide, but it’s perhaps a good thing that when we arrived here we sought an appointment with a local specialist. That comes up this week.

I don’t imagine that there’s been a break-through in treatment of advanced prostate cancer. We have no unrealistic views about my prospects. Indeed, a dozen years ago we never imagined I might make it to my eightieth year. But it will be good to sit down with an expert again and discuss the realities of our situation in the light of this test.

More and more it is becoming apparent that we have made the right move in leaving our home of 23 years in Paihia. For all the jokes about my attempting to tunnel under the wire to “escape the Gulag”, we are enjoying the comfort and convenience of the smaller home. We got sneaky satisfaction yesterday from watching one team clean our outside windows and another mowing the extensive lawns around our place. Although we’ve been away touring the country for more than half the time since we left Paihia we’re appreciating opportunities to meet new friends. We’re getting involved in some interesting activities and can cheerfully steer clear of some that definitely don’t appeal.

Above all, we are so grateful to have family dropping in from time to time.

Sunday, June 1, 2014

Error Prone Bureaucracy in the Church

Around 6am on April 1st I responded to a piece in the NZ Herald arguing against the requirement to bring all public buildings in the country to earthquake proof specification. An hour later this article had disappeared from my Herald App News. I guessed it was perhaps an April Fool Stunt.

Not so. Since being away for a few weeks I have now located the actual report, of some 100 or more pages. It argues that the immense expenditure needed to upgrade buildings all round the country is simply not justified by the risk.

Among a host of arguments, report author Ian Harrison at Tailrisk writes that the $3 billion cost of eq-proofing public buildings in Auckland would seem to be likely to save only one eq-death in 4000 years.  But about seven people would die of stress during the strengthening process. Of particular interest to me, he points out that churchgoers are tens of thousands of times more at risk riding a cycle than sitting in a sub eq-standard structure for an hour on Sunday mornings.

Having travelled through much of the country recently, I have seen many old churches which have been closed for strengthening or demolition. I have engaged with a few of the congregations in their agonies over the loss of their loved places of worship. I have seen the divisions that are splitting the membership about whether to repair or replace these buildings. And I have heard of some congregations which have taken the opportunity to just quietly close down altogether.

Of course, we need standards. Without doubt all new churches should be built to a better standard than those which are presently being summarily closed. But I think that the huge cost of strengthening or replacing many of these old structures should be measured against the realistic risk involved.  I believe Tailrisk is suggesting that, so far, Government has done the sums wrongly. I suspect the Methodist Church hasn't done any actual risk calculations at all.