Posted by wendiwendy
Yesterday we got the results from Dave’s four week labs, including another viral load count. The first test, at two weeks, showed no change. It was actually higher than the last viral load test he had, at the end of January. I figured his viral load most likely went up between the end of January and the start of his treatment in early April, which is why the test done two weeks into treatment showed a higher number than the January test.
Well, we finally got some GOOD news. His two week viral count was over 4 million. His four week count, the one taken last week right before he started Victrelis, was 1.6 million. !!!! That’s a huge drop in two weeks; when you consider that Victrelis is supposed to be the new wonder drug that really packs a whollop, it gives us confidence that his next test, at six weeks (with two weeks of Victrelis under his belt) will be amazing. We’re staying positive and confident here!
I have to confess, I was really worried about him starting this treatment. There are a lot of horror stories out there, and he had the added unknown of being a leukemia survivor and the recipient of a bone marrow transplant. Even though his doctors at the VA have all coordinated for his treatment and they were confident that his body could handle it, it still scared me. I was prepared for him to spend 6 to 11 months basically just sleeping, dealing with side effects, and taking medicine.
So far since he started treatment five weeks ago, he’s painted Mom’s kitchen, replaced the starter and battery on our car, tore out the carpet and put down laminate flooring in our bedroom (good grief, what an improvement!) and he’s currently painting a new shelf/stand for a TV downstairs. He’s making me feel lazy!
In the interest of full disclosure, he does admit that a big outpouring of physical energy will leave him pretty exhausted for a while afterward. He mowed the lawn yesterday morning and was crashed out on the couch in the afternoon (and falling asleep by 9:30 that night). It took him about two days to recover from the long car drive to Michigan, and the same for replacing the flooring in the bedroom.
He does have days where he wakes up and just has no energy. There’s no rhyme or reason to it – it just happens, and he has to accept that it will be a day when he’s spending most of the day napping. One of the bigger frustrations for him is that taking a nap doesn’t recharge his batteries the way it used to; he often wakes up feeling just as wiped out as he did when he went to sleep. So far, though, he hasn’t had a bunch of bad days in a row. He usually bounces back after a day of downtime. I can tell just by looking at his eyes if he’s fighting to stay upright or if he’s feeling full of piss and vinegar.
Even though our checkbook wouldn’t agree, it really is a good thing that the business is slower now and he can just check out and relax all day if he needs to. I’m so glad that he’s in a position to be able to do as his body dictates and sleep when and if it’s required, or go out and do the projects and activities he wants to do.
Even though he’s dealing with random tiredness, there have been positive physical changes. For about six months before he started treatment for his Hepatitis C, he was getting pains in the area of his liver – pains that were fairly new and starting to bother him. After he’d been on treatment for three or four weeks, he noticed the pain was completely gone. That was right after we got the viral load test results that didn’t show any changes. Instead of being discouraged, he told me that he KNEW good things were happening because that pain was gone.
Since he started Victrelis, he hasn’t had a rash. He had one day of nausea, the morning after his 10 pm PEG-interferon injection and Victrelis dose; he thinks it was just the combination of both together that was a bit much to handle. Every now and then he does notice a metallic taste in his mouth, so he’ll reach for hard candy or candied ginger to get rid of it.
We really believe he’ll qualify for the 28 week treatment (versus 48 weeks) so: Five weeks down, 23 weeks to go!
Posted by wendiwendy
I think it’s time for a medical update (now that we actually have some progress). I took a little unexpected hiatus from writing this past week while I dealt with what I call my ‘weird stomach thing.’ It started happening after I had a miserable month of salmonella poisoning from eating infected eggs that we got from Costco, back in the summer of 2010. I wasn’t sure WHAT was going on with me at first; I was on this fish oil cholesterol medicine called Lovaza and I assumed I was having issues because of that. I stopped taking it, still had the issues…they slowly started getting better after about 3-1/2 weeks, and then about two weeks later we got a letter from Costco, helpfully telling us that the eggs we purchased were tainted with salmonella, and we could return them for a refund if we wanted to. (We had already consumed them, DUH – we bought them a month and a half before they sent the letter! After this, and also getting two similar letters regarding infected ground beef about 2-3 months after we had already eaten it, we stopped buying meat and eggs from Costco. Gross.)
So anyway! I realized that was why I stayed so sick – eating those damn eggs for nearly a month – and hoo boy, it was miserable. I couldn’t really leave the house, since I never knew when I might need to break and run to the bathroom…especially if I had just eaten a meal. Not that I could really eat – it caused so much pain, I was just entirely debilitated. Great way to kick off the summer – I was sick from the end of June pretty much through the whole month of July. After that, my stomach seemed much more sensitive and now I get my Weird Stomach Troubles usually 2 or 3 times a year. That’s what I just finished dealing with and UGH, I hate it.
The last couple of times it’s happened, Dave has also had the same issues (and Paige as well – she was home when I came down with this before) so I’m not sure if it’s some kind of virus thing or what. It lasts anywhere from 3-6 days, and basically causes massive pain, especially after eating. I’m talking ‘lean against the counter and breathe through the pain like it’s a labor contraction’ kind of pain. I won’t get too graphic, but the symptoms sound like gastroenteritis (and may well be, who knows) except for the fact that, um, nothing really happens in the bathroom, if you catch my drift. So in that sense, it sounds like a diverticulitis flare-up, which…hey, I’m over 40 and most people actually have diverticulitis and don’t even realize it, so maybe it’s that. Who knows. All I know is that it’s awful, I become completely unproductive because the only thing that doesn’t hurt is to lie flat or stand up (sitting is the worst), and all I can think of is how much discomfort I’m in. I also can’t leave the house because what if I need the bathroom?! I added to my general misery this time around by imagining how I would deal with this if I had to go to work outside the home…NO WAY. I would have to take a minimum of four days off…can you imagine?! They would fire my ass so fast!
Dave is always offering to take me to the doctor and I always hiss back, “NO. I will never, ever go to the doctor for stomach issues because I refuse to have any of those tests done.” When I was 12, I had chronic stomachaches and I had to be admitted to the hospital for a bunch of horrific tests, all of which involved multiple enemas beforehand. The worst of them was a lower GI, where they gave me a barium enema and made me hold it while they took x-rays. I was 12, and it was a young guy technician who did the enema, which mortified me beyond reason. I was so tense and in so much pain, by the time they told me I could go to the bathroom I just went into the room, closed the door and collapsed on the floor in pain. Finally everyone started banging on the door, asking if I was okay, when all I wanted to do was stay in that bathroom for another hour or two. UGH. Never, ever again. (By the way, the tests just revealed that I had an irritated stomach lining; the doctor prescribed Valium so I would Chill Out…and it worked. My stomach still gets upset when I’m stressed out.) So I have this irrational fear of going to the doctor for this stuff. I won’t have the tests done; I told Dave I’d rather deal with the symptoms than the pain from the tests. And it always goes away. It just sucks while it lasts.
So while I was deep breathing and waiting for my stomach to stop being an asshole, Dave was gearing up for the start of his Hepatitis C treatment. I started feeling better and then Dave got sick with the same symptoms I had. (Oh! What seemed to really help was peppermint oil – Dave actually went around to a bunch of stores to find it for me. It’s called Pepogest, and once I started taking it I instantly felt better.) He had a 9 am appointment on April 10 and that was just a day or so away. Luckily he beat the symptoms back with Pepogest and his magic bullet, drinking vinegar. Can you imagine?! I hate the smell of vinegar, so I can’t even imagine drinking it (although he mixes it with juice…it’s still gross, though). Luckily by yesterday morning, we were both feeling like our normal selves as we headed out to the VA hospital.
Of course, we were driving in the middle of a massive thunderstorm (which I loved). It seems like every time Dave has an appointment for anything liver-related, we have some major weather event. It started with his liver biopsy in 2011 (we had a blizzard – it shut the hospital down and the biopsy had to be rescheduled). And this year, every time he’s had an appointment it managed to snow enough to where we weren’t sure we’d get down there in time (luckily we did). I told him that when we go back next month, there will probably be a tornado to contend with!
We were once again part of a very small group: just us, the couple from the first class we went to, and another single guy (but not the same guy from the first class). Everyone there was Genotype 1a, getting the same treatment: PEG-interferon shots once a week, Ribavirin capsules (3 caps twice a day), and then Victrelis (boceprevir) starting about a month from now. We were in the class for almost three hours and let me tell you, it was awesome. The nurse practitioner who was in charge, Mita, was worried it was too much information and didn’t want to confuse people, but it was really fantastic to get to sit and ask questions and just learn all about these major medicines that Dave was going to be taking and how to deal with any side effects that come up.
There was extensive discussion on each possible side effect and how to deal with it. I took pages of notes and asked lots of questions. I liked having a small group because we were in a very small room that was quiet and really easy to hear in. I could understand the video that she showed us, even though it wasn’t captioned, because the narrator stayed on the screen and I could read her lips and hear well enough in the small quiet room. (The video was on how to give yourself the interferon shots.) As scary as this treatment is, I feel like Dave is in good hands and I just feel really comfortable knowing he has someone so closely monitoring everything, someone we can turn to whenever we have questions. We never felt rushed, and we left there feeling really confident.
The guys all gave themselves their first shot while Mita was there to help and give them pointers to make it easier. Dave said it hurt, but nothing he can’t deal with. Actually, before the class started she pulled him aside and said he didn’t have immunity to Hepatitis A or B, so she was giving him a series of shots for that. He got a combined Hep A & B shot before the class started, and later in the day he mentioned more than once how much his arm hurt. That was definitely his biggest complaint about the whole process! He has to go back for two more vaccinations to complete the series, and he’s already grumbling about it.
He takes three Ribavirin capsules twice a day, 12 hours apart (he decided on 6 am and 6 pm). He took his first three last night, right after dinner. He’s taken another three this morning. He only does the Pegasys injection once a week, so he’ll do that again next Wednesday before bed. So far he hasn’t had any big issues come up. He said, “I can tell something’s going on, but that’s about it.”
He did say that when he got up around 4 am, he could barely open his eyes because they were so dry. He doesn’t make tears – it’s either from the leukemia or the chemo, I can never remember which – so he always has to use eye drops to keep his eyes moist. This is above and beyond, though. Mita did specifically say that the treatment ‘dries you up’ – she was referring to possible kidney issues, and all the guys were instructed to drink at least 2-1/4 liters of fluid a day (not caffeine, such as coffee or pop). Dave was really good about that but it still really dried his eyes up, so we’re heading out to buy him some heavy-duty eye drops later this afternoon.
The only other thing he’s noticed so far is that he’s been cold, which is unusual for him. He thinks it’s from all the extra water he’s drinking. Usually he’ll go out in 30 degree weather with a t-shirt on; if I ask if I need a jacket he’ll tell me ‘no.’ Then I step outside, shriek, and come back in to find my winter coat. So it’s a little weird to see him walking around the house with thermal underwear on under his t-shirt!
I did have to sternly tell him that he needs to tell me how he’s feeling and not try to spare me/hide it from me (which he does tend to do). I mean, if he falls out or something and I call Mita to let her know, it won’t be helpful if all I can say is, “Well, he keeps telling me he feels fine!” So I told him to let me know what’s going on, I’m not going to freak out or anything – I just need to stay informed so I can be there for him if he needs me.
The way the VA program works, the meds are given in person. So he has enough for four weeks, which takes him to the point where he has the third class. That’s when they introduce the third medicine, Victrelis, which is also a pill and has its own array of side effects (hence the class, to learn about how to deal with them). If he doesn’t show up for the class, he doesn’t get his meds. I think it’s a good process, personally.
His next appointment is in two weeks, April 24, when he gets his first labs drawn. This is an important blood test – it’ll show how his body is handling the medicine, whether it’s raising his blood sugar, affecting his thyroid or his white blood cell count, and most importantly, whether it’s killing the Hep C virus. I guess some patients actually clear the virus by this two week point! Depending on how he’s responding, they’ll decide how long the treatment continues. I believe it doesn’t go any longer than 28 weeks, which is half the time treatment used to take. If it’s not working, they’ll stop treatment and he will just wait until new meds come along. So even if he clears the virus in two weeks, he’ll still finish the full treatment. Then they test again six months after the treatment is completely done, to see if the virus has come back. If not, he gets to hear the magic word: CURED.
It’s early on in the treatment, so I’ll keep updating as it progresses and we see how it affects him. Right now, though, he has a really positive, upbeat attitude. He’s actually off at my mom’s house right now, painting her kitchen! I’m going to see if I can get him to let me help tomorrow…usually he claims there’s not enough room for two people to paint (he even tried saying that when we painted the family room downstairs, which is HUGE!) but maybe he’ll relent and let me slap some paint on the walls. I kind of like that he’s still feeling feisty…let’s hope it stays this way!