Saturday, 28 July 2012

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?

Monday, 23 July 2012

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.