The Hepalogue

Flailing in The Dark

by The Golden Phaeton on 28/05/2016

I’ve got six Sovaldi tablets left, plus one which rolled under my bedside table and which I’m reasonably certain I’ll be able to find when the time comes.

This close to the end I’d have thought I’d be vibrating with excitement, but no. I’m feeling anxious and not a little maudlin.

My daughter spent last week at school camp, leaving me to my own devices. This is generally a relaxed time. The section of my brain devoted to daughter-concerns deflates immediately upon her departure, like a punctured beachball, and I find myself mulling over the neglected subject of my own life, and my own future. On this occasion, however … I felt more like a stopped clock.

flailing-web

In part, I think side-effects are to blame.

Not so much the DAAs (sofosbuvir/simeprevir) for which the side-effects are mild and/or rare (and usually non-existent). Nor from Simeprevir, which can cause a form of photosensitivity that results in rashes if you spend time in the sun – but, well, I’ve barely been in the sun at all.

And that’s part of the problem.

The Ribavirin I take causes anaemia (though nowhere near as badly as when combined with peg-interferon). Because my body can’t transport oxygen efficiently, exercise is uncomfortable, and puts a worrying strain on my heart. Without exercise, I tend to get sluggish, sleepy and miserable, no matter where I am in life. And this affects my diet, and my general demeanour, and, of course, reduces the likelihood of my spending time in the sun.

I’d really like to set about getting fit again right now. But I can’t. Not for at least a couple of weeks. So I feel like I’m treading water, wasting time, pinned like an insect under the eternal neon of a transit lounge … and this without even knowing for certain I’ve been cured.

That would cast a positive light over everything, of course … it would all seem worthwhile … I could easily wait a few more days before setting out upon the next stage of my life – even if I was still feeling flat and unmotivated.

Thankfully, I’ll be seeing some blood results next week. I’m pretty sure they’ll reveal good things, yet I can’t help but worry. They were taken three weeks ago at the eight week mark of my treatment (approx). There is also a significant gap between this set of tests and those preceding. Anything could have happened in the interim – at least to the fearful, paranoid part of my mind. And it won’t be for six or more weeks after the conclusion of treatment that I do my next set of bloods.

I wonder, though, if this is the kind of concern only someone with my treatment history might have.

Through my four earlier efforts, I’d be tested fortnightly. I could track my ALTs and my viral load, pore endlessly over my blood results, acquaint myself with the names of obscure cell-types and proteins, seek hidden meaning in my haemoglobin count … Now, this may not sound too healthy in itself, but, as I may have said before, following my progress in detail has always given me a handle on my treatment, a sense a forward motion, even if, in the end, the therapy was unsuccessful.

I’ve been told by those who work in the field that people generally love watching their ALTs descend into the normal range and their viral loads shrink to ‘undetectable’. (I feel like comparing this to the reactions in Antiques Road Show, but I’m not sure if it’s a reasonable simile.) In any case, a boost to the morale can never be as bad thing, particularly during an extended, life-changing and rather serious therapy which, let’s face it, is not fully guaranteed to work.

As well, having more tests is often associated with having more contact with ones care-givers. This is not only be mutually beneficial on a psychological level (I have certainly experienced it thus) but personal familiarity can guide the assessment of a patient’s overall disposition in a manner impossible to the science of pathology.

My previous treatments were often clinical trials, and so demanded constant surveillance. Also, they involved interferon, a far more toxic drug than what we are taking today – one which tended to decimate my neutrophils (a type of white blood cell) causing a dangerous condition called neutropenia. Basic safety concerns indicated that tests ought be performed at a minimum of every fortnight.

Now, with a couple of reasonably safe pills and a success rate of about 95% the whole thing is simple as pie. Almost like a course of antibiotics. And I guess our doctors (and our government) do not see a need for frequent and rather expensive testing, particularly with so many people currently participating. (In fact, I learned only recently that there is ‘much debate’ currently over a further reduction of the already skeletal testing regime.)

Fair enough, on the face of it – and considering the vast sums the government has already spent. But I do think, at the very least, that before any such a reduction, it might be worth waiting for a new generation of proven, completely safe drugs with a 100% cure rate. (And doubt not. They are coming.)

Though the risks associated with the available HepC antivirals are considered minor, there have been side-effects reported – not only from Ribavirin and Simeprevir (as above), but also from Harvoni (though rare and obscure) and from the new arrival known as the Viekera Pak, which contains an HIV drug long associated with a suite of unintended outcomes.

It may be that any plan by the government to offset the billions it is spending on HepC by cutting back on expensive in-treatment pathology – for the very patients in who it has already invested so much – is risky, and possibly a false economy.

As for myself – being used to closer more frequent attention – I do feel like I’m flailing in the dark somewhat … at least for one more week …

If this is your first treatment, testing may not even be an issue. I know a few people who couldn’t care less how often they’re tested, as long as the treatment is a success – even if it does feel a little strange at treatment-end, when friends and family ask ‘how did it go?’ – and you don’t know. And will not know – until your next blood tests in another couple of months.

Another couple of months watching those razors and those toothbrushes …

Right about now, it’s graduation time for those who began treatment when the new drugs first became available. Hopefully, if this is you, you’ve breezed through the whole thing – inconvenienced only by having to remember to swallow the pills – and will learn, a little down the track, that you have been released from one of nature’s cruellest and most cunning villains.

The Golden Phaeton

 

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