Testicular = Of or relating to a testicle or testis.
Atrophy = A wasting or decrease in size of a body organ, tissue, or part.

I’m a boy and sometimes whilst pondering the meaning of life and other equally mundane stuff my eyes have occasionally focused on my balls, its just a boy thing. The one thought that has never popped into my head during such moments of reflection is “my balls sure could do with being a bit smaller”.

Now before all you guys with hep c start to panic Testicular Atrophy is really something that you only get with cirrhosis, only small % get it and by the time you get there chances are small balls will be pretty low down the list of stuff to worry about. I think it has to do with the liver being unable to break down estrogen, but don’t quote me on that.

So why do we need to talk about small balls?

We don’t really, we do need a chat about motivation though. Its challenging to get really motivated whist on hep c treatment, the tiredness in particular can seep motivation away and I’m sure the chemical changes that occur in the body don’t help either. If I had my time over I would have come into treatment in a different way. My master plan was to prepare well, lose excess weight, get much fitter and then ease up in the weeks before starting treatment. Looking back that was somewhat of a wimps tactic, you know an “ease up, be kind to yourself, things are going to get tough” kind of thing. Looking back from week 18 I think that was a bad plan, what I should have done is not wimped out, stepped up a level and hit the [treatment] ground running and let treatment sort my level out. When it comes to deciding when to stop or ease up the body should be the only judge, all the mind should be saying is “keep going, keep going”.

Whilst not being the end of the world that does leave me in the position of trying to get re-motivated whilst on treatment. For me the remote prospect of “small balls” has done the trick. I won’t deny being a touch vain but the thought of my hair dropping out or my skin turning into that of a lizard hasn’t bothered me at all. However I draw the line, call time out, stop the bus I want off, at smallballsville.

The weights came out today for the first time in 5 months, the exercise bike got a double session, diet is and will always be spot on, smoking is done. This boy is switching into mean, lean, fighting machine mode. That nasty virus can have my hair, can have my flawless almost childlike skin BUT make a move on my balls and I will knock it spark out.

Maybe this boy is finally turning into a man?

PS Just to clarify my balls are huge, massive…I mean I could lose 90% of them and they would still be huge….I’m in the guinness book of records….never had no complaints….nope, not me……honest

Keep the faith and lets kick some viral ass.

Well I’ve got to be honest its been the best week yet on a lot of levels.

Felt generally very good, the tiredness is still there but you can work round that, and as a result have worked everyday this week bar the Friday. I did do a shift on the Sunday though for those of you shocked by my laziness.

Managed to squeeze a nice bit of retail therapy in on Tuesday, which believe it or not is the first time I have been “out” proper since last September! Picked a nice new coat up [Paul Smith of course] a couple of pair of shoes [Tim Little's obviously] and another laptop [Toshiba but it was cheap]. What made it even better was that a mate I went with couldn’t find a thing to buy, nothing like others misfortune to put a smile on your face.

The sleeping is much much better, just had a couple of bad nights and to be honest you can really feel the difference the next day. I have moved the importance of sleep up a notch or two on my “important things to do on treatment” list.

Now let me tell you a little secret, may not work for you. I think a large part of the reason for my improvement is down to moving injection time from mid-day Monday to Friday night, with Doctors permission of course. On a practical level that just works better for me as my worst days used to be Mon/Tues followed by the second peak on Thursdays, it tended to wipe the most productive part of the week out. The real secret is that now I have changed injection days I have forgot when I am “supposed” to feel bad. I woke up this morning after last nights injection and felt just a little rough but caught myself thinking “I’m supposed to feel rough today”. That made me realise that my second peak has disappeared, I have simply forgot when it is supposed to happen! Don’t underestimate the mind in this virus killing game, you can only control the physical sides so much, what you can control more is your minds reaction to them.

And just a reminder, keep the faith

BTW The no smoking has gone pretty poorly but I’m no quitter…yes I am……no wait

NM283 is another drug in trials that is showing some positive results with the hard to treat genotype 1 Hepatitis C. You know the drill, years away if ever but still worth keeping an eye on.

Idenix Pharmaceuticals announced 4-week data today from an ongoing phase IIb clinical trial demonstrating that treatment with valopicitabine NM 283 combined with pegylated interferon resulted in rapid and marked reduction in virus levels in genotype 1 hepatitis C patients. The mean reduction in virus levels was greater than or equal to 4 log10, or 99.99 percent, after 4 weeks of treatment among patients in the two dose groups that began on Day 1 with 800 mg doses of valopicitabin NM283.

Press Release

Once again another good week, a bit of a struggle at the beginning of the week which was either the “hangover” from the Xmas/New Year break or a little downer following the PCR test results. My vote would go for xmas/new year, always found it a bit of a low time, relatively speaking.

Nothing much to report on the sides, hands have started to crack and flake a little which doesn’t look too bad but doesn’t half smart a bit. They are getting the full force E45 treatment. I may be getting a little joint pain but I am old and it is cold, again nothing major. Been a big improvement in the face area due I would say to a big bunch of clinique stuff a good friend got me for xmas, even cured the crusty eyebrow problem that the Daughter delights in talking about. For me at least the E45 didn’t cut the mustard on my face.

Apart from that just glad to have xmas out the way, we have the day itself, our wedding anniversary, my birthday and new year all in the space of a week. I of course forgot the anniversary [blamed the TX but I always forget] but shockingly the wife forgot my birthday. She pointed out that I had forgot her’s but as I reminded her it wasn’t her last one.

So thats another week out the way, managed to settle into somewhat of a routine of late and hope to continue that as long as possible.

Oh and BTW stopped smoking, again!

Keep the faith - Kill the virus.

The Vertex VX-950 does look impressive even at this early stage of clinical trials. I wouldn’t hold your breath but it looks worthy of keeping an eye on.

Data announced today by Vertex show that VX-950, an investigational hepatitis C virus (HCV) protease inhibitor, dosed in combination with pegylated interferon alfa-2a , achieved a rapid and dramatic reduction in viral RNA levels in patients with genotype 1 HCV infection.

Press Release

Willie Pastrano is a little known boxer but he was at one time light heavy weight champion of the world. A stylish slick fighter he trained often with the young Ali and many say that Ali got a lot of his moves from Pastrano.

The reason I’m telling you this is because he came out with a great quote, something that seems both apt and for me at least inspirational.

He may have been fighting Jose Torres, his final fight in which he lost the championship when obviously struggling the Doctor came to him and said;

“Willie do you know where you are?”

To which Willie replied;

“Damn right I do. I’m in Madison Square Garden getting the shit knocked out of me.”

As you may have guessed my 12 week PCR test results came in as promised today [a big up to the Hep C Boy medical posse] and the news wasn’t good.

At 12 weeks there are 3 possible results, undectable [which is good], a 2 log drop in the number of hep c virus in your blood [which is OK] and a failure to achieve at least a 2 log drop [which is bad]. I drew the bad straw today and failed to make the 2 log “cut”, which is another way of saying killed 99%+ of the virus, I just about scraped 95%.

Now that doesn’t sound that bad but the truth of the matter is that the hep c virus is relatively easy to kill, to a point. I would imagine that about 90% go bye bye with the first interferon injection, its that extra 10% that are hard to nail.

Treatment in the UK is largely specified by the NICE guidelines and they recommend that treatment is withdrawn if a genotype 1 doesn’t make the 2 log drop at week 12. They are only guidelines though, intended as a good guide to the best practices for the average patient. No doubt many Doctors follow them to the letter but in my case thankfully I’m staying on treatment for the moment. I have a meet with my Consultant later this month where I hope we can discuss the options as we move forward but if you are looking for good news then the fact that we have already stepped outside the guidelines is a good sign. It shows that my people are thinkers and trust me thinking is good.

Now be very quiet….listen…can you hear that? Thats the sound of the bell calling my non-responding ass off the stool for round 2. Back into the fight for me, you get another boxing quote.

“I’m scared every time I go into the ring, but it’s how you handle it. What you have to do is plant your feet, bite down on your mouthpiece and say, ‘Let’s go.’” - Mike Tyson

It was a perfect Christmas time morning, the snow had fallen which just added to the xmas vibe so the right thing to do seemed to be to start a snowball fight with the Daughter. Old age must have caught up with me as I tweaked my back, just a muscle strain I think which would have gone away with some rest. Unfortunately the wife made an unflattering comparison between the size of my nose and the carrot we had used for the snowman, to which any right thinking man would respond by threatening to “spoon” her head until she retracted said slur. Now spooning is under-rated, it involves attacking the head with a spoon as if it were an ice cream, the spooning action leads to almost instant submission. As I moved in for the kill the wife kicked out which resulted in me taking evasive action that a young Bruce Lee would have been proud of….the result being that I have *really* put my back out now.

I believe that no experience in life is wasted as long as you learn from it, let me share what I have learnt.

1. Little girls are very sneaky in a snowball fight.

2. With the possible exception of a pulled stomach muscle nothing effects every action of your body like a back strain.

3. If you are going to spoon somebody use at least a tablespoon to put some distance between you and the victim, a teaspoon just leaves you too open to a counter attack.

4. The time when you really need to go in to town and buy a walking stick is the time you will be least able to do so.

5. Sometimes you just don’t know whether to laugh or cry but either one is going to make your back hurt.

Treatment is no different to life, when faced with a challenge the first question you should ask is “what can I do?”. On treatment for Hepatitis C the number 1 thing that is within your control to influence the outcome is adherence, thats a fancy way of saying you need to take your meds when you are supposed to and take them and as often as you are supposed to take them. Life is rarely black and white but in this case lets go out on a limb, the only acceptable level of adherence is 100%, 99.9% is not acceptable. Really people buck up, how hard is it to do one injection a week and a few pills twice a day? Read the rest of this entry »

Up at 5am - check
Organic breakfast [cereals and fruit] - check
Beat the living daylights out the slam man - check
30 min on the excercise bike - check
bath - check
working - check
will need a nap later - check