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.

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 .....