Positive signs

The last time I spoke to my consultant - I whined just a little about not being able to regulate my mood & energy levels.

We decided that we needed to monitor my testosterone level just a little closer to find out what was going on and adjust the amount I'm applying.

So I've had to have more regular blood tests as a result and the last one had a little surprise for me. The testosterone level was fine - but they had also checked prolactin levels. To my surprise, the level came in at 1750 (ish - I can't remember the exact number). This is the first time since diagnosis that I've been under 2000. I was elated and it shows that the Cabergoline is doing the job.

Finally, I can feel the curtain coming down on the tumour now. Much as I hate taking the drugs, there is a real prospect I'll get the levels low enough to come off the replacement testosterone at some point (assuming my nuts come back to life that is).

If I can then drop the Cabergoline to a low maintenance level to keep the tumour from coming back, I'll be interested to see if my energy levels return. As per my last post - I feel fatigued all the time and I'm not convinced about the cause.

Me me me me me. 

How you doin?

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.

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.

Checkup Time - In Front Of A Live Studio Audience

Right ... I'm going to write this quickly tonight!

I had a follow up appointment with the consultant today. Firstly I was weighed and my BP was taken (93 / 53 .. pretty low but apparently that's just me .. hmmm).

So my consultant, Dr A, takes me through to his office and explains on the way that there will be a few people with him. Apparently there is a 3 monthly session held at the hospital where anyone with a vested interest in the subject turns up. Including the head of department, trainees and the regional specialist from nearby Oxford.

I walked in to the room - there was Dr A's desk and a couple of chairs next to it for me and my wife. Behind him were six of these people sitting watching the consultation. It was around this time that I was glad my issue was prolactinoma rather than piles or prostate (any bloke who's had a prostate check knows how bad this would be in front of an audience).

In summary, I was told the following:

- Prolactin levels have dropped from circa 200,000 ng down to 9000 ng. Still about 20 times higher than the target but a massive improvement. The drugs are working.

- There is no point in operating unless the drugs stop working. Operations come with risks and are unlikely to clear the issue totally so there is a likelihood that I would still need drugs after the event. Most likely scenario is that I will take Cabergoline for the rest of my life but at a reduced dose. Cabergoline is most effective because it hits every prolactin producing cell.

- My visual field test came back positive. I had taken this the day before but not blogged about it because there isn't much to say. I got called in to a room, stuck my head in a box and clicked a button every time I saw a dot flash somewhere. The good news here is that I'm not going to be told to stop driving. In a way this is a shame because I had been offered a day out driving high performance sports cars as a reward for hard work over the last year. I turned it down because I couldn't guarantee that I would be medically road worthy. Arse! I had always wanted to drive a Ferrari. I consoled myself by imagining that they rev limited the cars anyway!

- The bone density scan came back with warnings. The bone is getting thin, especially in my lower back. Just as well they caught this when they did then because the last thing I want to see is that crumbling away whilst I'm in my thirties.

I think the 'gang' of doctors in the room were pretty pleased with progress until I opened my mouth and dragged them back to the very beginning. As far as I was concerned (and still am) the lump in my head could be the size of a grain of sand - or an ostrich egg - I don't care. I told them this. My issue from day one has been the punishing physical and mental fatigue that has blighted my life day in day out for the last few years. And it's not just this either. My character has changed from easy going - fun loving guy to outright irritable arsehole. This has to stop.

As Roy Batty realised that he was fading from this world, he fought and kicked - and he screamed the immortal words "I want more life fucker / father" (depending on which version of Blade Runner you happened to be watching). Well I'll have some of that if you don't mind. The medical profession were coming from a 'Sex Pistols' point of view - kind of 'Never Mind Your Bollocks - Here's the Prolactinoma'. I made it clear - I have no intention of sitting on my hands waiting to see if my Testosterone level finally floats back up to an acceptable level.

'The Gang' were remarkably sympathetic and prescribed me some Testosterone Gel straight off the bat. It will mean periodic blood tests to see if I need to keep taking the stuff but if it helps me climb out of this fog ridden pit, back up to the sunlight then it's worth it. I was given strict warnings a) Not to rub it directly on my nuts as it's alcohol based and could hurt. b) Avoid transferring the stuff to my family - directly or indirectly. Yeah - I get this! The last thing I want to see is my wife or my boys (3 and 1) running around with facial hair and deeper voices than me.

Next appointment is in three months time!

Now then, could I find a pharmacy that sells the testosterone gel I had been prescribed? No .. surprise surprise! I'll have to wait a day for that to turn up. Naturally, the effects will be something to blog about.

When was the last time the doctor rang you?

5th May - Unexpected call

So there I am early afternoon trying not to fall asleep in yet another meeting about cloud computing. I'm beat by 12 O'Clock - the last thing I need is to go through a detailed technical meeting. My personal mobile phone starts ringing - the caller? The Doctor.

I spring up from the meeting room table and walk out - phone in hand. Outside the room, I take the call - all the while thinking 'What the hell could this be about?'

"Hello - it's Dr C here. Now .. I've had the results back from your blood test ..."

Wait? Results? Usually it takes a few days and I have to go to them .. and in any case, this time I wasn't even going back to the doctors for the results. They were just to be used by the endocrinologist as a reference for my consultation. The doctor continued:

"We need to discuss them - can you come in today please?"

Naturally I agreed and used it as leverage to get my arse out of the meeting about cloud technology (thanks understanding boss). What the hell could they have found out? I'll be honest, I crapped myself all the way up the M4 motorway.

My appointment was at 6pm.

The doctor advised, in a very tactful manner, that my prolactin levels were through the roof. This is a hormone produced by the pituitary gland in the brain. I'm not sure what unit the measurement is taken in - but apparently an average reading is in the low hundreds (he quoted around 200) - but mine was in the hundreds of thousands!!! I'm told the hospital ran the test twice just to be sure because it was so high. I'm not impressed .. prolactin helps women produce breast milk and I don't need it in abundance than you very much.

Here's where it gets tricky. Why would this be happening?

Well, the most likely explanation is apparently that I have a tumour on the pituitary gland. This would also explain issues that I've had with some very odd eye pain over the last year. It's unlikely that it will metastasise (like a spreading cancer) and will probably be a benign tumour - the size of which I will only know after I've had a brain scan.

When I started this blog .. I expected it to be 'nuts' centric .. not brain centric. That's the beauty of blogging. Twists and turns.

So the doctor is already talking about treating this with drugs but I guess this stance may change when the neurologist has taken his view. I'm expecting a call tomorrow from the hospital to kick this off. I'm not worried about this at all yet. Let's see what other crap they find whilst they're digging my garden.