Treatment Ends: And that, as they say, is that...

2000-Nov-12 : After 6 months, the treatment was unsuccessful, but the world hasn't ended (and my hypothyroidism goes on).

On October 11th, I (and my parents, and my fiancée Lisa) went to the doctor to get the 6 month results for my treatment--the crucial results which determined whether or not the treatment was working and should be continued, or if there really wasn't much point to continuing it. As you can probably guess by the title of this page and the heading of this section, it didn't work. My viral load is still high, and the decision has been made to stop the treatment.

Before I go on, let me temper this news with 2 pieces of information:

1. Going into this meeting, I wasn't certain which answer I wanted to hear. While one result was clearly worse than the other, neither outcome was really "Bad News":
   • If the treatment had been working, I'd have a good shot at getting rid of the virus (yay!) but I'd have to continue the treatment for another 6 months (boo!).
   • If the treatment wasn't working, I'd still have the virus (boo!) but I would immediately stop the treatment (yay!).
2. While it would have been nice to get rid of the virus, it didn't have to work. I'm not in any immediate danger, and the decision to start the treatment was largely as a "let's head 'em off at the pass" measure and not a last-ditch effort to save my liver.

And the reason I haven't written is not because I've been devestated, but rather because I've been enjoying life and lazily ignoring my duty to update the site.

For the regular readers: remember how I was a little bit frustrated that the measurements from my first liver biopsy weren't in the same scale as those from the later biopsy? Well, I got to experience similar frustration during this most recent visit. Dr. DiBisceglie told me the results of my current viral load count (sorry, I don't remember the numbers or the units) and explained that it was pretty high, and hence the medication wasn't working.

I had come to the meeting expecting to make a decision based on the relative difference between the viral load done at the start of the treatment and the 6-month numbers, and so I asked what it had been before. Dr. DiBisceglie had to rifle through his notes, and when he found them discovered that they were in different units, and claimed there was no way to convert between the two measurements. And I thought, Aargh!! How can this be? Why not? Why on earth can't he convert them? How does he know it's not working, then? Why wasn't he prepared for this?

I would have been more frustrated, but Dr. DiBisceglie explained that while there was no direct conversion between the two viral load measurements, the two were both in the same relative category (elevated but not extreme) and so roughly little change had occured. Further, he told me that, in general, those who responded to the treatment had 6-month viral load at or close-to zero. So even if I had gone from "high" to "medium" during those 6-months, the fact that I wasn't at "very very low" meant that it most likely was not going to work.

But as I said above, I'm not devastated. In fact, leaving the appointment I was (through self-convincing) rather psyched about it. I was stopping 'cold turkey', and was told that the effects of the interferon would go away fully in about a week, and the ribavirin took a little longer (2-4 weeks). (And those numbers were about right in my experience.) Here's why I was psyched:

• Immediately, I'd not be paying for the expensive medication any more. That's a $9,000 windfall, right there! Immediately, I wouldn't be having to give myself a shot 3 times a week. (Not that I minded the shots, but they did tend to dictate what nights I could do what activities.)
• Within a week, I'd not be feeling nauseated. I'd have more energy. I'd be less depressed. I could sleep well again.
• Within a month, I'd have much much more energy. I'd be able to start exercising and build back up my endurance (at least from 'non-existent' to its previous level of 'pretty sad'). I'd not be missing work from sickness (which I could fully rationally accept doing but which still made me feel a bit like a slacker). I'd be able to concentrate and remember things.
• I'd be healthy for Thanksgiving, for Christmas. I'd have the energy to assist in preparing for my wedding, and I'd have plenty of time to get in shape for it and my honeymoon.

So I think you can see why this news was not the worst in the world. Sure, I still have hepatitic C, but at this point it's doing its damage slowly enough that I can afford (and was advised) to wait for a better treatment to come along. Sure, it would have been nice to get it all over with and drink wine with Lisa on my honeymoon. I do miss being almost virus-proof: I caught a cold a week after I stopped treatment. And oddly, I actually miss giving myself the shots--it had a nice macho "take one for the team" feeling to it. But I'll get cured at a later date, and for now I'm loving life again.

Reading that, you might think that all the benefits are the same as not hitting yourself in the head with a hammer. ("Why are you hitting yourself in the head with a hammer?"   "Because it feels so good when I stop!") Was it, though a valiant and well-advised effort, all for naught? Did I waste 6-months and get nothing from it? Nope!

I've lost a good amount of weight, and good riddance! While the rebetron therapy diet is probably not for everyone, it sure worked for me! ;) [Though I will say that with far less padding on my posterior, I have discovered that I don't enjoy sitting for 3 hours in an airplane seat nearly as much as I used to.] Oh, and I got to lure my parents out to see my house :)

So boom-done, right? Stop the drugs and all is well with the world?

Actually, no, not quite. The first few days many of the side-effects of the treatment got worse, oddly enough. I had much more trouble concentrating, I had more trouble sleeping, I had less energy. A couple days after that I was acting quite depressed, although I truly believed I was happy about the outcome. At the time I thought that perhaps I was repressing my true feelings and my body knew it, but in retrospect I think the depression was induced by the wacky chemical changes in my body, and not directly because I was feeling blue.

Regardless, a week later and I was already feeling better than I had been before, and 2 weeks later and I was movin' and groovin'. I've started jogging with Lisa and (though I've had no blood tests) I suspect my red blood cells are probably back to their previous level. Just know that stopping your medication may actually make you feel worse for a short period (or at least, it did in my case).

I talked to Dr. DiBisceglie during our meeting about my thyroid, hoping that stopping the treatment might cause it to shape up and stop slacking off. He was doubtful--he said that in his experience, hypothyroidism in conjunction with Hepatitis C was usually caused in people who had a predilection towards it genetically. The treatment may have brought the hypothyroidism on earlier than it would have otherwise, but it probably would have happened anyway, and stopping the treatment didn't fix the problem.

That said, given my ripe young age and desire to make my thyroid do its duty, he was open to me stopping the treatment and seeing what happens. So as not to throw my body through too many changes at once, and so I can see and experience any effects separately, we decided that I would continue to take the thyroid medication for another month (until yesterday, actually) and then stop it. In a month from now (since the thyroid medication, like the ribavirin, takes a long time to take effect and likewise to leave the body) I'll go and get a blood test and we'll meet in January to see how that goes.

I actually decided to trail off the dosage myself (skipping every other day for the last week) under the (possibly foolish) idea that my thyroid would do better being eased into the transition.

The waiting game. I wait for a better treatment to come down the line. And I live my life in the interim. These pages will obviously stay up as part of my site and contribution to the net.mind, but unless something unexpected occurs or until a new treatment comes along, I probably won't be making any regular updates. (If you're really really interested about my thyroid, drop me a note and I'll keep you informed.)

I hope this doesn't decrease anyone else's hopes for their own treatment, and I'd like to sincerely thank everyone who has stopped by and left me kind notes or sent me emails. Please continue to feel free to contact me or write comments here.

- Gavin