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.

The Great Testosterone Yo Yo Effect

After my second blood test I heard nothing! So I rang the endocrine nurse and blagged my test results. I was still way over the accepted level but around half of the first reading.

OK - what now? Well I didn't get any advice from the hospital for the next couple of weeks. In the absence of official words of wisdom, I halved my testosterone gel use - until the can ran out - at which point I couldn't be arsed any longer. Rubbing jelly over your body is only fun when you're in your twenties, in love and prepared to get messy experimenting. No more standing around in the mornings waiting for the sticky patch to dry up before putting on my clothes for me.

So I took a calculated risk guessing that when the hospital did get back to me, they would give the same advice. Well, they didn't. Get back to me that is! So I chased them like a ferret chasing a prawn up a trouser leg. Eventually, after a careful 30 second assessment, they decided that I should stop taking the testosterone gel and take more blood tests after a week or so.

Testosterone has done some great things for me over the last few months. The effects peaked after one month I would say but generally it's been positive all round. I'm not impressed with the extra hair that has grown all over my body (especially up my back - starting from my arse). I do like the extra muscle tone and the general feeling of well being - and also the fact that my arms don't get tired if I hold them above my head for more than two seconds.

Let's hope natural production of the hormone has returned and I can concentrate on getting rid of that ugly lump from by bonce.

My next consultation has been helpfully moved back in to October. The letter came with a stern reminder of the cost to the NHS that missed appointments bring. I would like to remind them that it's a two way thing and to stop casually rearranging my consultations like they're a lunch date to discuss the contents of the Argos catalogue.

I'M ON FIRE

Just a quick point about this post. When I first found out that I had low testosterone, I wanted to know what testosterone gel would be like as a treatment. How would it change things for me - magic elixir or snake oil claptrap?

The first thing I found out was that searching for good information about testosterone on the web is a nightmare. The association with sexual potency and body building masculinity means that for every good page of worthy information you stumble upon - you will find 99 sites of worm ridden filth and / or sites trying to sell you something. The inability to filter out sites that would sell you your own fart for a dollar is really kiling 'search' for me these days.

So I vowed to share my experiences purely to help someone else in my situation. At this stage, prolactinoma wasn't factored in to the equation. It's a funny journey but it's come full circle now. You will see from the last blog, a small amount of pleading about my fatigue inspired my consultant to prescribe testosterone gel. This is blog post is about how I've been getting on with it.

Well- it ain't straight forward.

Running on low testosterone for so long is paramount to being bled to death over a long long long long time. The process happened so slowly to me that I didn't notice something was wrong until I found that i could barely lift my arse out of my seat. From that lowly position, application of testosterone gel was only ever going to produce a predictable surge.

The gel itself is quite similar to the evaporating alcohol hand rub that seems to be ubiquitous these day. In fact, it was mighty tempting to substitute the contents of a can of Testosterone gel with the hand gel at my mother in laws house. Naturally I would confess to my meanness over time .. probably just after her voice had broken perhaps. The conformist in me forbade such irresponsibility and I slapped it on myself instead.

This was my new daily routine. After showering and getting dry, I would need to alternate daily between rubbing the gel in to my stomach or my inner thighs. I was expressly warned by my consultant not to apply it to my nuts. Then I would wait three minutes for the stuff to dry off - after which time it would be safe to put some clothes on.

So how quickly did I get a hit from the hormone and how did it feel? Well, after three days I was feeling certain about the positive effects and after a week everything was in full swing (yes everything). The changes were quite stunning. Better mood - happier, more optimistic. Energy levels returned and I found that I wanted to do things rather than sit on the couch. Playing with the kids was no longer the effort it had previously seemed. On the negative side, I now had to spend the first five minutes of every day sitting in bed thinking about the war in Afghanistan before I could stand up. Welcome back to the wonderful world of men.

After a month, i was more active than I had been in the previous 5 years. I took up cycling - did floor exercise - got stamina and muscle tone back. Mental acuity returned and I felt sharp and able to make clear decisions once more

It really did appear to be a panacea - for as long as it lasted.

Around two months in, it all went pear shaped again. About three days after the briefest of chats with my consultant telling him how wonderful I felt I suddenly crashed. I was tired once more. not as tired as before but still not right. My mind began to grind in a slower gear again and the grouchy nature revisited my puny life to recommence spewing its negative diatribe over anything that passed within a 10m radius.

How the hell could this happen? I was rubbing in the magic gel wasn't I? Could it be that I needed more gel? Had my nuts failed entirely now that testosterone was pouring in through the epidermis at around 7am every day?

Surprisingly, after a routine blood test, I received a letter from Dr A. It advised that a) Although the prolactin levels had reduced further (6000 odd), I was still way over the acceptable level. It was then requested that I up the Cabergoline frequency to 'three times a week'. OK, perhaps it's not been as effective as they hoped but it's a small issue to take one more pill a week.

b) The second point that was made in the letter was regarding testosterone levels. Surprisingly they came back showing that I had twenty times more testosterone in my blood stream than I should have.

Could this be why I feel so unstable and out of whack?

The letter made a further point that perhaps the blood was accidentally contaminated directly with my testosterone gel. My guess is that it wasn't but I had to accept the possibility. A further blood test was requested to clarify the matter.

On the 2nd of September I had more blood carefully taken. I made sure that the arm used had not been exposed to the gel. If the results of the second blood test are the same then the doctor will likely withdraw my t gel on the assumption that my body has had the mother of all rebounds.

The other possibility is that my body is not removing testosterone accumulated in the body at a fast enough rate and that over time, I've poisoned myself as a result. Liver issues perhaps? I guess I'll wait to see the results from the consultant.

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.