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?

2 Years On - Return to Cabergoline

I didn't last on Quinagolide. It wiped me out.

After a discussion with my consultant, we decided to revert to Cabergoline. In conjunction with specialists from Oxford, it was agreed that radiation therapy & an operation were not in my best interests. Apparently the tumour is spread out in all the wrong places.

Operations carry risks & they couldn't guarantee they would be able to get to all of the tumour. In addition, the radiation would likely cause me complications later in life - and I'm too young for that (I took that to mean increased risk of cancer).

So my options for twatting (British technical term) this tumour are running out it seems.

All this was in the 1st quarter of the year.

So the strategy has been to run with an increase of Cabergoline - but no large doses. Smaller, more regular amounts in an attempt to finally flatten the blob in my head.

I'm not entirely convinced this is going to cure my problems though. Why?

* My prolactin has dropped from 203,000 -> 3000

* Testosterone is being regulated & monitored and the levels have been good so far.

* I'm still utterly wiped out.

It's the Cabergoline right? Well, I eased off the drug for a period & had no corresponding boost. So now I'm left confused. I dropped right back from about 4 pills a week to 1.5. When I first started the regime I was taking 2 pills and coping.

Current issues / symptoms -

* Awful physical fatigue - my body aches. Even after a good nights sleep. We recently had a hot day (it does happen from time to time in the UK) and *BANG* I was gone.

* I can do the smallest physical activity and the cost to me is massively exaggerated. I call this the 'mow the lawn' test. If I can mow the lawn and not be wiped out for days, I'm in a fit state. Right now, I don't have the energy to mow my face with a razor.

* I have muscle weakness. Hands and forearms in particular.

* My muscles are stiff and I'm starting to walk around like an 80 year old with a bad case of piles.

* Mental fatigue. I can 'just' manage work. After work, I have no energy to think about any of my other projects.

* I'm doing odd things during work. I'm typing things out and then reading it back and finding it either doesn't make sense or I start writing word A and word B comes out.

* I've had some confusion issues with problem solving & organisation.

Maybe these are side effects of the medication and tumour. However, in my heart of hearts (what the hell does that really mean - what a weird saying) I'm starting to think something else is going on here. It's going to be a struggle working this out. My doctor and consultant will blame EVERYTHING on the prolactinoma between now & death. If there's another condition causing this fatigue, it's probably going to be missed.

So - two years on and I still feel like a bag full of spanners trapped under an elephant's arse.

Happy days.

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.

Who the hell calls a drug CABERGOLINE?

19th May - 7 June

The frail and poorly little chickens who end up with an unhealthy dose of Prolactinoma will eventually end up with drugs of some sort that will reduce the tumour. Quite early on , my GP indicated that I would end up on a drug called Cabergoline (which appears to be the generic name for Dostinex).

I put my prescription in my wicker basket and skipped down the yellow brick road to the nearest pharmacy. They gladly took the prescription and asked me to pay up front - only then to find that they didn't stock the drug, telling me I could wait until the following day. Errr .. no! A quick refund and a trip to ASDA and .. they also didn't have the drug! Third time lucky - Boots (the chemist) found it under the brand name and managed to dispense twice the amount that the prescription had asked for. Well done Boots - I didn't even have to cash in my reward points.

One of the things I've been curious about is what it's like to take these drugs. Will it be like taking smarties and completely painless? Or will I spend half my time face first in the crapper!?!

Well, for me, it's been like this.

Wed 19th May - Take my first pill in the evening (started straight on 0.5 mg)

Thursday 20th May - Fine until midday - at which point my head spins and I spend a lot of my time resting my face on my laptop keyboard at work.

Friday 21st May - Seemingly fine all day

Saturday 22nd May to Wednesday 26th May - *cry* To be honest. I couldn't believe it! Nausea - dizzyness - more nausea. Those days were great days for lying flat on my back! A great way to lose weight as well as I was damned if I was going to sit down and have a Sunday roast in that state. Now! Caveats apply here. I suspect that it was the Cabergoline but there is no real way of knowing. I have two very young kids in the house and they have a great track record for bringing home bugs and passing them to Daddy. If you're on Cabergoline though - at least you can contrast and compare with my own experiences and make up your own mind. Around the 25th of May I spoke to my consultant who advised that if the nausea didn't subside, I should consider dropping back to 0.25 mg for a week. As I felt I was turning a corner on the Wednesday, I stuck with the full dose.

Thursday 27th May - Monday 31st May - Okay. Firstly the sickness passes. This is great because almost a week of moaning about sickness has bored me to tears. My poor wife must be fed up of my 'pity me' bollocks by now. Then for two days, I feel utterly fantastic. The kind of 'grrrrrreat' that falls out of Tony the Tigers mouth when he's trying to flog you a box of sugar saturated corn flakes. Could the drugs be working already? Is it just up, up, up (in more ways than one) from here? Well that 'high' lasted two days and so far has yet to return. For the remaining days of this period, I returned to the normal subdued 'me' just without the afore mentioned head spin.

Tuesday 1st June to Thursday 3rd June - 10am every day I slip in to a fog. Concentration goes out of the window and you can forget getting me to a) make any decisions - b) evaluate anything technical - c) follow the thread of any conversation - d) get a joke or remember the punchline - e) remember where I put my phone - f) remember where I put my phone again - g) WHERE THE HELL DID I PUT MY DAMN PHONE!!!

Friday 4th June - Monday 7th June - Fatigue has returned. From the moment I wake up to the moment I crash in to bed, I'm a dead weight. Limbs ache all the time. Around lunchtime I'm scuffing my feet across the floor. Mentally I'm wiped out also. I'm falling asleep all over the place (in the bath yesterday - in the waiting room at the hospital today as I waited for a blood test). The worst thing about this - and the last six months really - is the guilt. Guilt that my poor wife ends up having to pick up the slack. Sickness and Health? Better or Worse? No dammit! She deserves a break. It's only been three months since she had her left knee rebuilt after dislocation problems. Now she's running around wiping my arse for me. I owe her one.


This week I finally get my visual field test - and I also get my follow up consultation with endocrinology. I'm in half a mind to beg them to sort my hormones out and fix the damn fatigue. Perhaps I'll handcuff myself to a nurse and swallow the key .....

17th May - Two Tests

I returned on the 17th back to the Osprey ward at the Great Western Hospital. They were running tests relating to cortisol (something called a Synacthen test ).

If you really can't be arsed to click the link and read all about it (and I appreciate life is short so why should you) - basically I get jabbed in the arm with something to stimulate cortisol production and then they take samples of blood over time to see if my body it reacting as it should. It takes around 2 hours. Lucky for me, I have a good 3G signal and the department don't care if I surf the web on my phone just as long as the thing is on silent. I sit there reading up about robot building :P

With everything going on over the last few weeks - and the root cause being so unexpected, it's easy to become precious about the condition and become self centred. Yes, I've been exhausted and fatigued for so long now that I can't remember what it feels like to be normal ... and the prolactinoma with it's prospect of visual impairment and leaking spinal fluid sounds very frightening .. but is it THAT bad?

Well ... as I'm sitting there reading about how to wire up Metal Mickey, a lady sits in the chair next to me. She seems friendly and we get chatting. I offer up the fact that I have something growing in my head .. she tells me about the terminal breast cancer she has and the drug she's taking to avert bone tumours. There .. the prolactinoma is quickly put back in its place. It's sobering no?

Other than that, all I can say is that I got two free cups of tea out of it! The test eventually came back with a good result - which would show that I still have some pituitary function and it's not all doom in my bonce.

I collect my perscription for Cabergoline on the way out of the hospital - although I have to wait a couple of days before I can start taking the stuff. I'm sure that's going to be a joy.


19th May - OAP Bone Scan Shocker For Young (ish) Man - Currently Bent Out Of Shape

I got called in to the hospital for a DEXA scan. This is essentially a bone density scan which involved something like a star trek scanner moving up and down my less than he-man body. In my case they scanned my lower spine and my left hip. Why? Because low testosterone over a prolonged period can cause osteoporosis! Let this be a warning for those of you who like to go commando - you need to pull your trousers down for this scan. You may well have low testosterone and your love missile may be missing its ability to deliver a payload - but it's still there - and the old bird operating the scanner may not be pleased to see your bowyers unwrapped!

I'm concerned about this just a little (the scan not the commando bit) and I'll be keen to get the all clear. No results yet.

It's a quick job and before long I'm in the car heading back down the M4 to work.

14th May - continued

I turned up at the hospital accompanied by my wife and reported to the Osprey ward - eventually we were ushered in to a room and met with an endocrinologist (hormone specialist). I'm asked all the usual questions about how I got here - how was I feeling etc. This was followed by slightly painful discussion about whether my cock would stand to attention and under what circumstances.

Eventually we got round to talking turkey.

Just how high was my prolactin reading? - A normal level is circa 500 (assuming ng) mine came in at 202,000. About this time, I expected Roy Castle come back to life and start playing the trumpet.

Had they found anything in my head? Yes! I have been diagnosed with a macroprolactinoma 3.5 x 3 cm. It's wrapped around a carotid artery - pushing in to the optic chasm and invading the sinus region behind my nose. This is the root cause of my testosterone failure so I now need to make a public apology to my nuts. The pituitary gland has a major role to play in body chemistry and being squashed by a tumour has done little to help it get on with its job.

Is it going to kill me? No. But it will cause problems if not dealt with. Aside from the fatigue I've been experiencing, it could impair vision (optic chasm). Also, the point about the sinus also comes with complications which I'll explain.

I'm going to be given Cabergoline - a drug which should shrink the tumour (in 80% of cases I understand). If the tumour has truly invaded the sinus region, when it shrinks, it will unblock the hole it's made and I'll end up with CSF (brain fluid) peeing out of my nose. I've been given a phial to carry with me at all times and (I kid you not) should fluid start coming out, I have to collect the stuff - walk in to A and E, get some antibiotics (to prevent meningitis) and then prepare for some kind of patching operation.

Hmmmm

Further to all this, I've got various other tests to take. Bone density (because prolonged lack of testosterone can cause osteoporosis apparently) / ECG tests to make sure my heart is fit for the treatment I'll be receiving / I'll also be getting and further visual function tests and a cortisone test. I should get myself a secretary really to keep my diary!

OK .. I'm lacking any comedic twist on pretty much any of this at the moment. I'm actually writing retrospectively though - my next entry will cover the events 17th May which put my problem in to perspective.

For the record - looking at the MRI scan was fascinating. The blob looked ugly though. I'm thinking of giving it a name so I can strike up a dialogue with it and talk it out of my nose. If I can get my hands on the pictures, I'll post them on this blog.