The Hepalogue

Yes, Fifth Time Lucky

by The Golden Phaeton on 16/10/2016

The Captain looked at Fermina Daza and saw on her eyelashes the first glimmer of wintry frost. Then he looked at Florentino Ariza, his invincible power, his intrepid love, and he was overwhelmed by the belated suspicion that it is life, more than death, that has no limits.

“And how long do you think we can keep up this goddamn coming and going?” he asked.

Florentino Ariza had kept his answer ready for fifty-three years, seven months, and eleven days and nights.

“Forever,” he said.

Love In The Time Of Cholera – Gabriel Garcia Marquez

 

Last fortnight, when my final PCR results failed to appear when expected, the clinic vowed to call me the moment they materialised.

A week later. No word.

I took the initiative and rang. Predictably, they ‘don’t like to give results over the phone’ – yet I persisted, reminding them of their promise. Eventually, some information was passed down the chain:

‘It’s all good.’

Great. Fantastic. But not quite specific enough. Not the clear, unambiguous answer I had been craving for upwards of three decades. Not the kind of answer that would, in all good conscience, allow me to remove my toothbrush and razors from hiding. Doctors are busy people. There was a reasonable chance that – coming from a preoccupied practitioner juggling any number of demanding clients – ‘good’ may have referred to any of the multiple test results I’d had recently…

Now, I was pretty certain I was cured. My life has taken a noticeably upbeat turn since I began treatment and, with certain caveats, I’m feeling remarkably good. For these positive changes to have been the result of some kind of placebo effect would have been nothing short of a miracle.

But yet… I needed the results. I needed them right in front of me. In black and white. And here they are. Right in front of you.

chosen-one

Years of anxiety, fear, fatigue, depression, self-hatred, guilt, frustration, shame and physical prostration evaporated in a flush of sudden tears. I didn’t expect my reaction to be so emotional but, in retrospect, it was no surprise.

It was quite something actually. Quite a feeling. I recommend it. Though it did involve being offered a box of tissues.

Over the decades I’ve endured an absurd amount of debilitating Hep C treatment. That’s definitely part of why I reacted the way I did. I think, in my under-conscious, I expected to be doing Hep treatments every few years until the disease finally killed me.

I may be wrong, but I’m pretty sure I haven’t used this blog to detail just how much ‘treatment’ I’ve experienced over my life. Sue me if I’m wrong, but I feel like this is the right time to do it.

Last week I was speaking with a representative from MSD (Merck Sharp & Dohme – who have recently entered the Hep C market with a combination treatment called Zepatier.) He brought up the case of a sorry soul who had been treated four times before the virus cut and ran.

I shrugged with studied nonchalance. And went on to recount my own treatment hell.

It began some time in the nineties, at a guess. I would have been in my early to mid thirties. I’d heard of the interferon treatment but was vague on details. With time, driven by both worry and curiosity, I made my way to the liver clinic at the Alfred. After a chest x-ray, lots of phlebology, a painful biopsy, an ECG and a session with a psychiatrist, I began a course of Interferon alpha (IFN-a).

Very exciting at the time, I recall. The virus and its treatment really piqued my interest, but by the end of 6 months of 3 weekly injections, I had very little interest in anything at all, spending most of that time in bed, irritable, uncomfortable and depressed. My viral load dropped a little, but it never looked like I’d be cured. Fair cop. It was a one in five chance, and the cherries didn’t line up.

A few years on came something called Rebif (interferon beta) an abominable substance which was (and perhaps still is) used to treat Multiple Sclerosis. I participated in a trial of the frightful stuff – an exceedingly unsuccessful and short-lived trial. Short-lived in objective reality that is – in the soul sucking gloom of my bedroom it seemed like an eternity. This was by far my most exhausting and devitalising treatment experience, and to make matters worse the injections themselves were agonising. Its effect on the virus was sweet fuck all.

Then came the vaunted pegylated interferon-alpha which, because it is pegylated, lingers in the system longer and keeps the virus under more or less constant assault, meaning only a single injection is needed per week.

In combination with ribavirin, a proven antiviral, two very similar treatments were available under the cool-sounding Pegasys (IFN2a) brand name and the ominous-sounding Pegintron (IFN2b). I was prescribed Pegasys, which came in a fancy blue calico bag with freezer packs for the pre-filled syringes, pens, fridge magnets and whatever. Idiot that I was I actually felt excited walking out of the hospital with it.

Pegylated interferon was supposed to be more bearable and perhaps it was a little better, but any improvemen was wiped away by the actions of the ribavirin, which tends to decimate the red blood cells leading to varying degrees of anaemia. In my case this caused breathlessness and a straining heart. The new dual therapy had a cure rate of 40% which was double that of the previous. Despite some worrisome neutropenia (a low level of neutrophils: immune system cells which I believe, in their deceased form, are the primary constituent of pus). I felt very optimistic. My viraemia had been significant (12 million parts per millilitre (ppml)) and it dropped precipitously on commencing treatment. For maybe six weeks there was hope. My viral load decreased to about 12,000 (an impressive 3 log drop – ie 3 zeros cut from the end of the number) but when it began to creep back up, the show was over.

This experience broke the back of my relationship at the time. My daughter was very small, and her mother didn’t really accept my reduced condition as an excuse for not fulfilling my responsibilities. Before long an atmosphere of tension developed in the house, and I was too depleted to do much about it, or anything else for that matter. And that was that. Three treatments down.

There followed a, by now customary, year or so of avoiding hospitals like the plague.

Around 2009, I began to hear of new Hep C treatments. Targeted, oral medications known first as ‘small molecule’ drugs, then later as DAAs. Clients taking these medications along with the established treatment regimen were said to be closing on, I think, a 70% cure rate.

Medical practitioners began to speak of DAAs as the first step towards an interferon free treatment. To me, at the time, this seemed an absurd, probably impossible hope.

Naturally, I was desperate to get my hands on these shiny new elixirs. With each new treatment (save that ghastly Rebif ) I had come closer to being cured. I figured, who knows why, that one more attempt would put the whole nightmarish thing to bed.

Two DAAs were approved for combined use with peginterferon and ribavirin. These were telaprevir and boceprevir, however, for reasons I cannot recall, I did not partake. Perhaps I was ineligible because I was not ‘treatment naïve‘… Or had the wrong genotype… or the wrong IL28B polymorphism. Who knows? The details have faded with time.

To this point, my specialist Keith Noack (a very astute and very patient Bostonian who has fought in the trenches against HCV from the outset, and whom I must single out for his excellent care) had encouraged me to relax, reminding me that I had time on my side. I was still reasonably young and, though my viral load had again swollen to an humongous fifteen million ppml, the HCV was not doing a whole lot of damage to my liver. I recall suspecting this might be due to my Latvian ancestry and the intimate relationship with alcohol often enjoyed by Northern European peoples. I wondered if a custom like, say, drinking vodka at breakfast might select, in evolutionary terms, for a harder core liver…

According to a webpage I was following at that time, upwards of 100 DAAs were in development. Everyone seemed to believe a cure was just around the corner, so I was patient and, with time, I gained a place on a new trial and girded my loins for another six months of abject misery.

On top of the interferon/ribavirin I took an experimental drug called BMS-790052, a second generation DAA from Bristol Myers Squibb. The trial was double-blinded and placebo controlled, so I had no idea if I was getting the new drug or merely repeating my previous treatment. But, again, I was hopeful.

Predictably, the ribavirin butchered my red blood cells, reducing my body’s ability to transport oxygen. In its turn, the interferon did its usual job on my neutrophils – so that when I developed a chest infection it seemed to last forever and required some hard core meds to control. I spent a great deal of time in bed watching movies and TV series, rising to look after my daughter when necessary.

But good things were happening in my blood. My viral load fell like a lead balloon, rapidly reducing to 200 ppml. An impressive 5 log drop.

Only 200 cranky little devils for every million solid citizens, busy fattening my hepatocytes till they burst in a spray of cheap clones…

little-fuckers-for-web

The little fuckers are tearing me apart.

Two weeks later, another set of tests, and my load had increased to 500. Again, that was that. My specialist suggested I retire from the trial and I didn’t take much convincing.

Four treatments down.

As for BMS-790052, it went on to become daclatasvir, one of the linchpins of the new IFN-free treatments – but only ever used with combination with another DAA.

This time I learned my lesson. Belatedly, I vowed never to inject another phial of interferon into my stomach. I waited as long as I needed, and with time I was rewarded.

Of course I didn’t go into so such detail with the fellow from MSD, who was somewhat impressed that I had subjected myself to five treatments in order to get cured.

‘That might make you the record holder’, he said.

Perhaps. But I don’t know if it is a badge of honour or a badge of stupidity. You tell me.

One thing I can say for sure is that I understand why some people are leery of the new drugs on the back of what they’ve heard of Hep C treatments of the past. What I don’t understand, in retrospect, is why I was so keen to put myself through such torture, when I might have been one of the ‘watchful waiters’ who are only now emerging from the woodwork, satisfied that the new medications are tolerable and effective.

The only positive I can think of is that the course of my disease was possibly slowed; ie there is some chance that my liver might be in worse shape if I hadn’t hit it with treatment after treatment over the years.

As it stands, I have moderate fibrosis – but the liver is near to magical in its ability to heal. I’ve heard stories of cirrhotic people whose insanely high fibroscan scores have improved extraordinarily post-treatment. Of course I’ll have to beware of alcohol for the rest of my earthly residence, and might add a few years to my life with a liver friendly diet – but then, so might everyone.

Interestingly, my vitamin D levels have normalised from a point, several years ago, when they were literally undetectable. I’ve been taking supplements, but not religiously, so I wonder if this may be a pointer that Hep C can impact one’s Vitamin D levels. (As I’ve mentioned in an earlier post.)

All my LFT indicators are now pure as driven snow. My thyroid is slightly wonkier than than it was at my last test, but the trouble there remains subclinical, so I don’t require treatment. I’m not sure how it stands at present, but over the years there has been talk of HCV impacting the thyroid gland so, who knows, perhaps in the months to come things will improve there too.

Though I’ve only been officially cured for a week, in reality It’s been some months now since the last of the pestilential nano-vermin in my system withered up and died. I’ve been feeling increasingly healthy with time, and by all reports that trend will continue. My GP did make ominous mention of possible auto-immune issues cropping up in the future, owing to my system’s long war of attrition with the virus, and there is always the chance of some other god-knows-what rearing its ugly head down the track. But at this point who cares? I’m not about to start worrying about something I can’t even imagine, let alone control.

All I can say, in the end, is that I don’t think I’ve ever had something quite so bad vanish quite so suddenly, and quite so completely from my life.

The Golden Phaeton

PS: If you feel like telling your treatment story, anonymously or not, let me know at admin@hrvic.org.au. We might be able to do it here.

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