Life in the Villa

I celebrated Independence Day with my first blood test for screening for the ARN-509 trial. I won't hear about it until after the second one in ten more days. Then it will be an interview and a series of more sophisticated tests to see if I fit the trial profile. It all seems a rather slow process... I just want to get on with it!

To add to the interest of my medical life I have been treating a number of minor skin cancers on my face and head with Effudix cream. This resulted in a few days of bleeding all over my pillowslip at night. So, to ease this laundry crisis I took myself off the daily Cartia which thins my blood slightly. One morning a week later I was wobbling all over the place so I promptly resumed that. Now I can stand up but bleed less.

Around these minor medical affairs, we have been flat out lately. Our Barbershop Chorus has performed twice.  We've had quite a few visitors popping in. And I'm in the middle of writing and manufacturing two books at once as well as publishing yet another run of Brian Malcouronne's absolutely splendid book of funeral resources. These three jobs would have been pretty ordinary a few years ago but they are the first attempts at binding work for nearly a year. The cool damp weather is simply ideal for reconditioning printed pages for binding but having them spread all over the garage floor is not quite ideal. At the same time I've commissioned a separate computer to run Windows XP (safely off-line at all times!) for my publisher and video and scanner programmes, none of which will run on Windows 8 - thank you for nothing, Mr $8billion Bill Gates. Thank you for everything to James, the Village Computer Club expert!

In the very cold snap that the ski companies are enjoying in the school holidays, we're keeping very comfortable in our cosy villa and learning all kinds of things that nobody bothered to tell us: we can buy milk from the Village restaurant cheaper than at the supermarket, and we can pick up beautiful scones and cakes for a dollar or two any time. Mind you, Bev is flat out baking all kinds of goodies day after day; not because we need the sweet stuff but, I suspect, because she enjoys the kitchen so much. Quite a few others are benefiting.

It's just about a year since we made the decision to move closer to family and to a better environment for both of us. Everything about the move has turned out to be for the best. We're enjoying good health and fitness but are in the best place possible if those should change. We're very lucky.

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.

Whew!

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.

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?

ARN-509

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….