Posted by wendiwendy
It looks like Dave’s Hepatitis C treatment is going to be starting sooner rather than later, so I’ll be posting about it periodically. This is the official first post, although he hasn’t actually started the treatment.
Dave is getting his treatment at the VA hospital, and they have you go through some classes before you start the meds. They do this so they can answer questions and be sure that you really understand everything about the medicines and side effects, and how to handle any issues that pop up when you’re in treatment. We had the first class on Thursday morning.
It was small, just us, another couple that looked to be near our age, and a slightly older guy by himself. Dave filled out some forms, mostly about drinking, drug use and any possible mental health issues. The nurse practitioner had a sing-song accent (very pretty) that I know causes some problems for Dave, so I was being very careful to listen to the instructions and watch what he was doing in case he filled something out wrong.
One of the first questions was about drug use in the past six months (marijuana, heroin, cocaine, LSD, meth, etc.) and I could see him checking off ‘cocaine – 4 to 5 times.’ Now, Dave was definitely wild in his youth (it was the 60s and 70s, after all) but if he’s been doing coke in the past six months, this was news to me. I tapped him on the shoulder and murmured, “Um, hon…is there something I need to know? You’ve done coke 4 to 5 times in the past six months?!” He looked stunned, and I pointed out the ‘past six months’ part of the instructions. We both started laughing; he had completely missed that when the NP mentioned it.
We watched a video on the various hepatitis viruses, how they affect the body, and how they are treated. Everybody there was in a different position: The guy by himself was still undecided about treatment, but he had Genotype 2 which is easiest to clear; the other guy had already done treatment either one or two times and it was unsuccessful (I couldn’t hear whether he didn’t finish the treatment or if it just didn’t clear the virus for him), and he also had cirrhosis so his disease was more advanced than Dave, who has Stage 2 liver disease (cirrhosis is stage 4, I believe). Both Dave and the other guy have Genotype 1a, which is the most common but harder to treat. Dave, however, has a gene, IL28B CC, that responds really well to treatment. So the nurse told him he has the best kind of 1a to have.
I know the genotype stuff is confusing but it’s one of the things I didn’t know about Hep C … it’s not just one virus, there are lots of variations and they all respond differently to treatment. I also really never understood what the deal was with treatment; I remembered hearing a couple of famous people say they had Hep C and were taking off work for a year (or retiring from the business), and I had no idea why they would need to do that for a virus. Turns out the treatment is really a whopper for most people, kind of like chemo, and is commonly described as “feeling like you have the flu for a year.”
After the NP went over everyone’s paperwork, she told us a little bit about the meds. She focused on the treatment for the 1a people, which is different from what the guy with Genotype 2 would get (the guy who wasn’t sure yet about doing the treatment). The VA currently treats Hepatitis 1a with a three medicine combo – a weekly injection of Interferon, and two pills: Ribavirin, taken twice a day, and Boceprevir, taken three times a day. The Boceprevir isn’t started until nearly a month has gone by, although I’m not sure why (something I should ask next time). Dave will be giving himself the shot, in his abdomen (at first we thought he was going to have to drive to the hospital every week…kind of a hassle, since it’s a 45 minute drive).
They’ll be doing blood tests at least every four weeks, possibly more for Dave because his platelets were a bit low and this treatment is known to really drop your platelet count. They check your thyroid levels and blood sugar, since the meds are known to throw both of those things out of whack. If his viral count is less than 100 at 12 weeks, they’ll retest him at 24 weeks. If it’s above 100 at 12 weeks, they’ll stop the treatment because it isn’t working. Many people, though, clear the virus by 8 to 12 weeks on the new treatment. Even if he does clear the virus that soon, he’ll still have to finish the full treatment to be sure the virus doesn’t come back. (It can still come back even after you clear the virus and finish all the treatment…stubborn, right?!) I’m pretty sure that if he tests clear at 24 weeks, his treatment is finished. It used to be that they treated you for 48 weeks (basically for a year) but with the addition of Boceprevir, it has cut treatment time in half. That’s good news!
There was some talk of which side effects warrant a trip to the emergency room, but I think we’ll get more into side effects in a later class. We still have two more classes to take, apparently – which is fine by me. Better to have too much information than not enough, right? After this class, which lasted about an hour and a half, Dave was sent to the lab for a drug test and to have blood drawn; we should have the results tomorrow. After that, assuming his labs are well enough to give him the official go-ahead for treatment, he gets scheduled for an eye exam. I guess the meds can mess with your vision, so they keep a close eye on that as well. Then we’ll be doing the other two classes, and I guess at some point, either when the classes are scheduled or shortly thereafter, he’ll actually get his meds.
I’m a little nervous about all this – the meds can mess with his thyroid, eyesight, blood sugar, give him rashes, make him feel like he has the flu all the time, make him depressed/anxious/short-tempered (he likes to call it ‘ragey’) – so it’s no picnic. Dave, luckily, is approaching it with a good attitude and is just ready to fight this thing and get rid of it once and for all. I’ll keep you all updated as we know more!