Tuesday, May 30, 2017

Believe it or Not

Today we went to Medical Oncology and met again with the prostate cancer team leader. They must have heard of our discomfort about going on Abiraterone and sent along their best operative!
We’d met this charming fellow last year when he introduced me to two new drugs that turned out to be absolutely life-changing. So we had very good rapport and plenty of confidence in him. Especially when he said he was determined not to try to talk us into accepting a medication we were not quite happy about.
We canvassed the alternatives: chemo is an option but we had already decided that was not for us. Targeted radiation on the spine is a possible option if we don’t do anything else but the recent scans did not suggest that there was widespread cancer at this stage.
So we turned to Abiraterone. We worked through our dozen or so questions and were surprised to find that our consultant was a member of the team that did the first trials on Abiraterone seven years ago in UK. I had read of these on the internet and had been looking forward to finding more about it year by year ever since. He’d had extensive experience with hundreds of men using the drug, not just the limited numbers who have qualified for it in this country. It was no trouble for him to answer every question with illustrations out of that experience.
Serious side effects, he said, were virtually non-existent. It became clear that a lot of our misgivings about side effects and quality of life were, in his experience, not really appropriate. Benefits in slowing the growth of the cancer were not great but measurable. Extra life expectancy, yes, is only a matter of months.
We queried him about the advantage of commencing this drug when I have no significant symptoms of the cancer—beyond a couple of bouts of back pain recently. The fact that this month’s CT scan didn’t reveal any great advancement of the cancer in my backbone also made us wonder if this was an appropriate time to start this kind of medication. His view was that using Abiraterone while I am in good shape is more likely to give another year or two of good quality of life than delaying it until I need more frequent medication for pain.
Also, we found that we can control the amount of medication I take and he mentioned some ways in which I could get extra benefit from what I do take. And he thought that, if it turned out to be reasonably efficacious, we might plan for a course of up to twelve months. It would not be for ever. Indeed, he said, if the cure seemed to me to be worse than the disease, I could stop at any time.
He said that in selecting the limited number of men who may be suitable for this expensive medication, his team take into account the specific elements of the patient’s cancer and overall lifestyle. He reminded me that my cancer is only 7 out of 10 on the Gleason scale so it seems to offer a realistic target for further hormone treatment. He also suggested that my lifestyle, general fitness, knowledge and attitude would seem to make me a better candidate for the drug than many men half my age.
He even challenged me with the thought that it would be a good thing if the drug enabled me to continue to speak out about the issues of life and death which are becoming more and more part of my own personal experience. (Flattery will get you everywhere, I thought—but I will think about standing for the somewhat dysfunctional Village Residents’ Committee!)
As have all my friends, he urged us to keep the massive cost of this drug out of our deliberations. My ethical concerns about the disproportionate amount of the country’s Health budget that is spent on people at and above my age remain. But I know that if I decline this offer it will not actually make much difference to the health prospects of middle aged men with prostate cancer and it certainly won’t provide breakfast for a few more school children.
Certainly, life —and the NZ State—owe me nothing. At my birthday last week I passed the average life expectancy of NZ males. And we know that men with Metastatic Castrate Resistant Prostate Cancer (MCRPC) generally die within two years—I am halfway through that period already. In a sense we have nothing to lose. And perhaps I still have some good reasons to remain active and well.
So we have accepted a prescription and will make a start.

But chemo? — forget it!

Monday, May 29, 2017

Suicide Statistics

While the official in charge of Mental Health in NZ is doing his belated homework and trying to find out how many people committed suicide each year on his watch, I'd like him to tell us also how many of those suicides were of suffering, elderly people who, fearing they were about to lose control of their lives decided to take matters into their own hands.
Other more conscientious researchers are telling us that this number is increasing substantially in this country in the absence of any serious plan for introducing a more orderly alternative. It would be interesting to know if the present ballooning in the number of suicides is actually of the young people with whom entertainer Mike King does such a great job. But it's possible that the increase could be among the suffering and scared elderly, in whom nobody seems much interested. We need to talk more about this....

Thursday, May 11, 2017

PSA down? Really?

Well, yesterday's PSA test, exactly a month since my last one, is actually down from 60 to 56. It's not a significant change but it's better than another "three-month" doubling. That would have been pretty serious.
We have an appointment for next Tuesday and the big question of what happens then will be high on the agenda. We have a large list of issues we wish to discuss. But the gist is that we continue to be comfortable about resisting further intervention just for the sake of three months of extra life at the end... Whenever that might be.
We don't want to seem ungrateful to a benificent health system but the outrageous cost for those additional three months of life does not seem to be justified in someone of my age and relative health. If I felt a whole lot worse because of the disease I suppose I might feel differently about medicating to postpone the inevitable... But the reality is that for nearly fifteen years my quality of life has been affected only by the side effects of medication, never by any symptoms of the disease.
Abiraterone is maybe too much, too soon...

Friday, May 5, 2017

Light at the of the tunnel?

A recent newsletter from End of Life Choice NZ reports that there may be a shift in the views of the Parliamentary Committee studying ending of life in NZ.  At the submissions last year, Bev and I heard at least one Committee member say firmly that there would be no recommendations coming to Parliament as a result of the Committee’s work. They would merely collect data and pass it on to the House. 

But now, according to Chair Simon O’Connor, who has made no secret of his outright opposition to any change in the law, there seems to be a change of heart. He is quoted as saying he suspects the Committee will actually make recommendations. 

“I think at this stage it probably will go further than simply (ask) the House (to) take note of its report," he said. "I think there are some elements coming through - most members, if not all, think there are some things we should be recommending further here.” 

This is a more encouraging view than we have heard previously from the Committee. It will hearten members of End of Life Choice (the upcoming name for the Voluntary Euthanasia Society NZ) as they have their annual meetings next month.