Thursday, February 3, 2011

~ my intimate blood-borne saboteur.

For better or for worse, I’ve enrolled myself in the trial of a new drug which may be a potent HCV inhibitor. It’s a triple therapy: as well as the study drug, I’m on the standard-of-care - peg-interferon and ribavirin: a toxic cocktail which tends to cause anaemia, flu-like symptoms and a genocide of the neutrophils, those fundamental elements of the innate immune system which are seen most often as a constituent of pus.

I’m desperate to shrug off the virus. It’s not killing me yet. For a fifty year old my liver’s in pretty good shape - according to the painful biopsy I had a few weeks ago. And my level of ALT (an indicator of inflammation) is within the normal range. However I’ve had the accursed invaders for upwards of a quarter of a century and there are rather a lot of them: at last count nine million viroids per millilitre of blood. The moment age begins to weary me, to weaken me, I fear they will grasp the opportunity to scour me from the surface of the planet - like a fastidious girlfriend with a box of tissues, scrupulously seeing to a clumsy boyfriend’s spilled red wine

Weird simile, I know. I’ll trust my subconscious and leave it there. Oh, and I was stung by a bee the other day. The hottest of those recent days. In Bruce Butler’s pool. A bee, of all things. There I was, lounging peaceably in one of Bruce’s vast and colourful collection of floatation devices when, lo, the underside of my upper-arm descended upon a bee. When did this last happen? Was I six? Younger perhaps? Of course, even a painful incident like this will not undermine my love and admiration for bees. The creature was acting purely out of instinct. I know that. Though I admit to taking a soupçon of pleasure in what must have been a painful, extended demise.

Polly, however, was out of the pool in a flash, pale as a sheet, trembling in the corner furthest from the water, demanding that we leave immediately. She is terrified of bees. And wasps. Snakes too, I think. (About a fortnight ago, I was walking with her and her friend Megan by Scotchman’s Creek when I spied what I believe to be a tiger snake side-winding across the path. I was a child when I last saw a snake down there.)

Just to finish up on the subject of bees ... Robert - as I have explained previously - cannot stop himself feeding the surly, obese, ill-humoured local population of brush-tailed possums. He built a beautiful possum box for them to inhabit - put it atop the shed in the hope they would cease forcing up the tiles and sleeping in the roof. Robert knows the ways of these possums. Intimately. He can tell them apart as they come for their nightly serving of putrid bananas. They seem to trust him too; he alone is allowed to stroke the fur of the matriarch’s offspring peeking from her pouch ...

Unfortunately, before the possums even noticed Robert’s labour of love, a swarm of honey-bees appeared and automatically made it their home. They became a fixture in the yard. During the Winter,
for a time, the hive disappeared and shortly after we found pieces of depleted honeycomb amongst the dried leaves and the dust beneath the box. With Spring the bees returned, and they remain there now ...

I would love to steal a little of their honey... but I dare not risk it.

But back to the point ... this is my fourth attempt to flush the (stubborn genotype 1a) virus from my system. The first was a a monotherapy: interferon-alpha on its own (I responded, but barely). The second was trial of something called Rebif: interferon-beta, typically used for MS patients (The injections hurt like hell, I felt like shit and it did nothing). Then came the double-therapy - still in use - interferon-a and ribavirin (my viral load dropped from 10,000,000 to 1200, but then, like the Borg, the virus adapted and resumed its deadly replication).

Each of these attempts have excised more than six months from my life. It’s simply impossible for me to operate as usual while on these drugs. I’m not myself. I’m reduced, functioning at a minimum.

It’s a gamble: surrender these swathes of time in the hope that, later in life, I will avoid cirrhosis, or liver cancer - or else take a chance and let the virus do its evil work. Always a hard choice. And Polly must be considered. I don’t want to be sickly and weak when the time comes to wield an axe - or machete, or shotgun - when suitors come a-calling ...

I have benefited from the treatments. The most recent, though technically a failure, has caused my liver to show signs of improvement - despite my viral load careering back up to nine million.

This time round, at three weeks in (I’ve just had my fourth weekly injection of interferon-a) the side effects have been milder than I recall. The initial fortnight was bad - I might have had a poisonous creeping ague caught from some queasy, debilitated swine - but since then I’ve been normalising. There is the anaemia of course. It gets in the way of the exercise I rely on to bind my body and soul. But if this is the worst of it - this and the fatigue and the fogginess and the low-mood - then I will plough through the twenty-one weeks remaining with ease.

Perhaps the virus is already gone? The new drug - BMS 790052, which directly attacks a protein necessary for HCV replication (NS5A) - is supposed to work very rapidly. Perhaps I’m feeling better because I’ve cast it out at last. My dark passenger, as Dexter might put it. My intimate blood-borne saboteur.

Or perhaps I’m one of the unlucky ten percent who, instead of the new drug, are receiving a placebo?

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Anonymous said...

Just reading this post and others you have written, I don't know how I stumbled across your blog but I did.... please continue with news re your treatment as it will be beneficial to all of us out there going through similar situations.
I too have the same type Hep C and am about to undergo treatment for the first time...I am scared and feel very alone my chances are 50% at best , so I have to wonder if it is worth it...I may have had the virus for over 30 years but my ALT's have doubled in the past 6 months so now there is no choice for me.
It has been 23 years since those darned spores have left me mostly to my own devices so as you are well aware it can be done, but the hardest thing in the world is to fight them with a partner...I do not think it can be done.....but I hope for you I am wrong.
Your writing is beautiful,
I really wish you all the best,
Love to you are yours

Halina said...

Sad to see your posts are becoming less frequent-have just discovered your blog and am thoroughly enjoying write beautifully (as if you need a stranger to tell you:)). Hope the treatment is having some positive effect..
BTW, this is my first blog post; been reading blogs for years but have never felt moved to comment til now
so there you go..:)

sam sejavka said...

You know, with genotype 1, it's very late in the day for a 50% success rate. Do you know about the third drug they're adding - telapravir - which ramps the chances over seventy percent? There's an awful lot on the horizon ... something ridiculous like 50 new drugs in development.

Thanks for your comment by the way. And you're right re: partners. A person on interferon/ribavirin is very difficult to deal with.

StellaCollector said...

Sam I have my own blog now
I am starting treatment in a month, on the standard stuff, I am now looking to see if I can get a trial on the new drugs.
I don't understand why they have to give us geno 1 types a method that is only 40% at most successful and for one year too.
I have no idea how to get through this.
6 months and a 70% chance seems like a better option.
How are you going ?
Cheers Stell