Wednesday, 21 December 2011

Head in the oven

Different people get different mileage with their drugs.

Me? I have zero tolerance it seems. If I stand near cigarette smoke I'm ill. If I drink the smallest amount - I'm ill. If I take medication ...

My Soiree in to chemical treatment has not faired well. Cabergoline wiped me out and now I find that Quinagolide does the same.

The recommendation with Quinagolide is to take it just before bed with food. Why just before bed? Because, for me at least, 30 minutes to 1hr later and I'm a zombie. Trust me, I would not be safe behind the wheel of a car immediately after taking this drug. When I sleep - it's like I'm a dead man. My wife tried to rouse me the other night and, apparently, I would not wake up no matter how loud she shouted or how hard she poked me in the ribs. This isn't great considering that I'm on call one week in three.

*ring ring .. ring ring*

Telephone: "Hello - we have a problem with a virtualisation platform that appears to have become isolated and gone split brain - we need you to instigate the disaster recovery plan"

Me: "ZZZzzzzzzzzzzzzzzz"

What compounds the problem is that I struggle to wake up and I'm not capable of engaging my brain around technical issues before lunchtime. It's like living in a fog. With a career that demands the best out of me at all times - knowing the schedule of work that I have lined up for 2012 - and with a wife / kids to feed, mortgage & bills to pay - I cannot continue with Quinagolide.

I'm only on 75 micrograms .. still about a third of the expected dose. When I speak to the consultant in the new year I'm going to be straight with him. The likely outcome is that I'll be having radiation therapy followed by an operation. They've already booked an appointment to explain the procedure - so they must have expected this outcome.

I have an MRI scan booked at the start of the new year and a review the week after. I suspect that the prolactin has escaped again. Damn this prolactinoma.

Saturday, 12 November 2011

The Great Cabergoline Flop

This update is dedicated to my avid reader - Colin.

It's been an age since I last blogged. That's because everything's been going well right?

No - I'm a busy man these days. My job / career has taken off in the most spectacular way (off to Rome this week) and I have a wife and two kids to think about. To top it all off, I've joined a writers guild and I'm busy working on two screenplays right now. (Time left to blog divided by lazy = zero).

Thing's have not gone been great. I thought long and hard (about 5 seconds) about whether I should actually blog every step of the way but decided that it was pointless really. I'm hoping someone with a prolactinoma will stumble on this site one day to get someone else's perspective - not get a daily cry-fest about my hormone balance being out of whack.

So last time I posted - I had been put on Cabergoline (Dostinex) and was slapping on testosterone all over my body. Generally it was working. The tumour shrank a reasonable amount and the testosterone was helping right? Yes, well, kind of.

Firstly - in my experience - slapping on t-gel is no substitute for the body's own manufacture and regulation of the substance. It's only when things cock up that you begin to marvel at the micro-regulation the body is capable of. Such a finely tuned machine. Me rubbing testosterone in to my legs like Vic Reeves just doesn't 'cut the mustard'. (Colin: Now I understand just a little bit of what it's like for you with your insulin regulation).

Secondly - my consultant raised the dose of cabergoline considerably over the year to try and get on top of the tumour. In many ways the drug produces amazing results without the need for invasive surgery. The problem for me was that when I moved beyond a couple of tablets a week, I started suffering from fatigue. They had me on 5 tablets a week (2,2 & 1). On a day when I took two together - 6 to 8 hours later I would be wiped out.

To show how dumb I am, it took me months to work out what was going on. I couldn't stay on the drug at the doses required to keep the tumour shrinking. Fatigue is what got me here in the first place right?

Blah blah - lot's of intrigue - blah blah eventually me & my consultant are in agreement over the drug being the likely cause.

Unsurprisingly - I'm now on a new drug called Quinagolide. They're ramping up the dose and checking blood as we go to work out what's needed to squish that prolactin level. Currently I'm on 1/3rd of the expected dose. So far so good - no side effects - but cabergoline was the same at a low level.

If they ramp up the drug and I get the same side effects then the alternative is to commute to Oxford every working day for 5 weeks where they stick my head in an industrial microwave oven and try to bake the thing out - followed by an operation. Drastic? Well the last MRI I had showed that the tumour had flattened somewhat but was still spread out in the horizontal and poking in to my sinus region. Yuk!

The concerns with radiation / operation in that region is that there's a risk that the pea sized pituitary could get damaged and result in other 'issues'. To top it all off - if they don't get it all out, the damn thing will just grow back again. Great - so if you chop off my finger or my nose (things I like) then they're gone forever. Chop out a tumour and it's a different story.

I'm sure I'll post something about how effective Quinagolide is over the next two months. I know you can't wait. :-p

p.s. - I love how the male nurse at my GPs practice could have a laugh at/with me about the milk producing aspects of prolactin. If only I could get some out - he would have gotten an eye full.