We headed off to Dave’s 12 week appointment at the Hepatitis C clinic feeling a little unsure of things. We didn’t know if we might catch a slightly judgmental attitude because he went off the treatment after they tried to help with the different GERD medication. Dave had called Mita on Monday to let her know he had stopped the treatment again, and we never heard back from her.
“Now, if Mita yells at you, just leave the room,” he joked, as we got closer to the hospital. I knew he was just teasing, but I admit I was slightly nervous about this visit.
When we were about 10 minutes away, I said, “I guess you didn’t need to get there an hour early for labs, since it doesn’t really matter anymore.” Normally he tries to get to the lab around 8 am so they have his results back by the time his 9:00 appointment with Mita rolls around. They use the lab results to tweak the Ribavirin and PEG-interferon dosages, if necessary.
“What?” Dave was shocked. He looked at the clock; it was around 8:30 at this point. “Oh my God…I didn’t even think about that. I was thinking the appointment was at 10:00 and we had plenty of time!” After freaking out for a couple minutes, he just laughed at himself. There was nothing we could do at this point, and we would still get there in time to go to the lab before the appointment. They just might not get the results back in time. Since he was off the meds anyway, what difference did it make?
As we walked in, it was cutting it pretty close – just about 10 minutes to 9:00. Dave decided we should just go up to the Hep C clinic floor and he could do the labs afterward. We got up there and the waiting room chairs were filled up – a husband/wife couple we’d never seen before, and one guy that was in the classes with Dave. We don’t see him all the time because he lives far away and does some of his appointments at a location closer to his house. We chatted with him a little bit and it turned out that he had cleared the virus as well. So of the three people in the class (Dave, Mr. S and the lives-far-away guy) Dave was the only one yet to get the ‘all-clear’ on his viral load. This is a little ironic since he has the type of 1a virus that is supposed to respond the best to treatment. Of course, he may have cleared the virus now…we won’t know until his test results come back next week. But the other two guys cleared first, obviously, since they already knew they were clear. We congratulated our faraway friend and waved goodbye as he left.
Mita smiled and waved from her office, so that put us at ease. She came out to let Dave know that he would be seeing the doctor this time, and he wouldn’t be in until 10 am. Dave asked if he should go back down to the lab, since he hadn’t had time earlier, and she told us to go on down.
After his labs were done and we waited for a while, we headed back up. I had never met Dr. N before – the one time I didn’t go with Dave was the one other time he had an appointment with him. Mita joined us for the appointment. Dr. N started out by asking Dave about the GERD symptoms, so Dave gave him all the details of how it was affecting him, and explained that the new medicine was pretty much the same, if not worse. He looked through Dave’s records and confirmed that Dave was a candidate for fundoplication surgery to help with the hiatal hernia, which is the main issue. Thanks to the GERD medicines Dave already takes, he has no problem with acid reflux. But the hernia was making food and the Hep C medicines wash back up into his esophagus.
The doctor scheduled Dave for a surgery consult, so he goes for that in one month. From there, he turned to the lab results and made a comment about Dave’s thyroid level. He asked Dave how he was taking the thyroid medicine, since it needs to be taken an hour before you eat. Dave explained that he gets up every day at 5 am and takes his thyroid medicine. Then he would eat a snack at 6 am, before his dose of Victrelis and Ribavirin. He was very, very careful about taking the thyroid medicine properly because he knew the Hep C meds could mess with his thyroid levels.
“Well, obviously the Hepatitis C medicines were preventing your thyroid medicine from being properly absorbed,” the doctor continued. “That happens sometimes, and your level is really high.” To be honest, we’d forgotten about the thyroid issue. It was mentioned at the first class, and they checked Dave’s thyroid values at the end of January, before he started treatment. Everything was fine, and it was never mentioned again. Apparently they don’t test the thyroid again until this three month visit.
I was sitting behind the doctor so I did miss some of what was being said. At one point I could tell they were talking about medication dosages and I asked him to clarify – was he talking about the thyroid medicine? I thought he was telling Dave they were going to increase his Synthroid dosage. After he explained that he was talking about the GERD medicine, I asked him if Dave’s Synthroid dose would be changed since his thyroid level was high. He said no, just keep taking the same dosage and the level would probably come down on its own since he’s no longer on the Hep C meds. He’s getting his thyroid re-tested in a month.
The general feeling from the whole visit was one of compassion and a willingness to work with Dave to help him feel better in general. There was no sense of ‘Why didn’t you try harder?’ or ‘Why didn’t you just stay on the treatment even with the side effects?’ The impression we got, from the doctor’s reaction to Dave’s thyroid level, was that he probably would have been taken off the Hep C meds even if he hadn’t had the issues with the Victrelis burning his throat and lips.
Ironically, talk of the Hep C treatment was very minimal during this visit. There was no mention of future treatment plans or any concern about his viral load at all. Pretty much the only thing that was discussed was the fundoplication surgery and the thyroid issue. Towards the end of the visit I finally asked if they would be testing his Hep C viral load now and in the future. “Oh yes, it’s very possible that you cleared the virus, so we’ll re-test you in three months to see what’s happening,” the doctor explained. “If you’re clear now, there’s a chance you might still be clear then. I doubt it, but we’ll see.” Mita then reminded Dave to call her next week to check on the current results of his viral load count.
They didn’t sound optimistic for it to stay clear if, indeed, he has cleared the virus by now. But even if it does come back, at least he’ll have knocked it back a bit while we wait for newer medicines to hit the market. Luckily, there are LOTS of drugs for Hep C in development right now, so we’re optimistic that if he needs them in the future, he’ll have some new options (most likely without the use of the PEG-interferon injection). If you’re curious, this is a great article on all the Hepatitis C drugs currently in trials and what’s going on in the industry: http://www.pipelinereport.org/2013/hcv
Dave wanted a copy of that morning’s lab tests, so we went down to the records department to request them. After we got the envelope, Dave handed it to me while he went to the bathroom. I couldn’t wait, so I pulled out the results and scanned them.
When he came back out, I said, “Hon…did you know your TSH is 77? Seventy-seven! The high range of normal on this sheet is 3.74!”
He grabbed the paper from me and stopped walking so he could read. I could see him looking back and forth between his TSH number and the range of normal printed to the right of it. I knew how he felt – when I first looked at it, I thought I was seeing it wrong. My first instinct was to skip past the decimal point in the 3.74 and read it as 374. I had to keep staring at it to realize that no, the high range of ‘normal’ is less than four, and his TSH is 77. Good grief!
Of course, we got all animated and talked about this for the whole drive home. It explained so much. The first thing we did when we walked in the house was turn on our computers and look up the symptoms of hypothyroidism. We kept reading threads where people would freak out if their TSH was something like 7 or 10, and they all talked about how they could barely function at that level – they were so tired, etc. Two of the biggest symptoms are weight gain and fatigue, and that completely explains why Dave has been so, so exhausted and why he gained 15 pounds in the space of a month. I mean, sure, you expect to gain weight when you have to have a snack with 20 grams of fat to go along with your Victrelis pills, three times every day. But 15 pounds in a month? That was a bit much.
Now Dave naps when he feels like he needs to, and I think he feels less guilty about it because he knows there’s a medical reason for him being tired. His GERD and hiatal hernia symptoms are back to normal; the Hepatitis C meds were obviously a main culprit. We’re counting down the days until his next TSH level is tested (last day of July) so we can see how far it’s come down. We really have no idea how long it will take for it to return to normal, or if it ever will without a change in Synthroid dosage.
We started walking in the mornings again (while Dave has the most energy) and we did stop the 30 Day Shred workout – that was just a bit too much. Easy does it! This is pretty much the end of his Hep C chapter, unless he needs to be re-treated in the future. Things are slowly getting back to normal.
As far as Dave’s Hep C treatment goes, this past week has been a roller coaster ride. Up until my last update at his eight week visit, things had been pretty tolerable for him. He met with the attending doctor and Mita, the nurse practitioner we’ve been seeing at every visit, and updated them on his side effects and how he was handling everything. Things were going well enough that they told him he didn’t need to come back in two weeks like he had been; he could wait for a month before his next blood draw and refill on his meds.
His viral load from the eight week visit was 4,000 – down from 4 million when he first started treatment in April of this year.
This past week, though, things were getting grim. I noticed most days he was very quiet and obviously not feeling well – he was sleeping a lot and just seemed ‘off’ to me. Since we spend all day, every day together, it’s very noticeable to me if he isn’t feeling well or is in a bad mood or whatever. Every now and then he would say that the metallic taste from the Victrelis was really bad, and the medicine was coming back up in his throat. He said it tasted like he’d just swallowed a handful of fertilizer. We went in search of hard candy to try to help with the nasty taste, per Mita’s recommendation, and he got a few different flavors.
On Wednesday of this week I woke up to find Dave in a really foul mood. He was furious and fed up; he told me he’d been up in the middle of the night dealing with the Victrelis coming back up into his throat. It was burning his esophagus and his lips; he had been using this concoction of Lidocaine and Mylanta on his lips to try to protect and soothe them, but they were blistered and he was really in pain. The skin on his lips has always been thin and sensitive, originally from the GVH (graft-versus-host) from his bone marrow transplant, and then aggravated by the reflux and GERD he also suffers from.
“That’s it, I’m not doing this anymore,” he fumed. “I stopped treatment.”
Normally he starts his day at 6 am with a dose of Ribavirin and a dose of Victrelis, seven pills in all. He had skipped this dose.
Dave is not a complainer. He’s not one of those guys who gets a cold and then lies around, sniffling and feeling sorry for himself. He isn’t a martyr either; he’s just very matter of fact about medical stuff, having survived chemotherapy and a bone marrow transplant in the 90s. He came through that and now everything else kind of pales in comparison. And he hadn’t been complaining about the Hep C treatment up until now, other than good-naturedly joking about being mad that he’s gained weight instead of lost. So when he told me he’d made the decision to stop taking his medication, I knew it was serious. If it was bad enough to make him stop the treatment, then it was pretty damn bad.
Dave is not one to feel cowed by doctors. After his bone marrow transplant was done, they told him he needed a series of five shots of chemo into his spinal column. The first two weren’t too bad, but the third just did him in. For 22 hours he had an excruciating migraine headache; he vomited every 20 minutes for the entire 22 hours. After that, he told them, “No more.” He refused to let them give him any more injections, and he’s here, 20 years later, to tell the tale. I’m the type to be more intimidated by doctors; it’s only been recently that I refused to take a medication my doctor wanted to prescribe. I still have that fear of authority figures that was instilled in me as a kid; Dave could just give a shit, basically.
I asked him to tell me more about what was happening to make him stop the treatment, and I found out that he’d been dealing with the Victrelis coming up in his throat nearly every night for days on end. His lips had been blistered and sore for over a week; he just hadn’t told me. Although he takes all kinds of medication for GERD, he also has a hiatal hernia that was never repaired, so food tends to come back up into his throat. The medications help the acid aspect of things, but that’s not what he’s dealing with – it’s the actual food and medication coming back up into his throat because of the hernia. (He was supposed to have surgery to correct it years ago, and then the VA just kind of dropped the whole thing…after he’d gone for multitudes of tests over the course of a year and a half, showing that he qualified for the surgery.)
After we talked for a while, I recommended that he call Mita to let her know what was going on and that he was stopping treatment. After he explained to her what was going on and how the medication was affecting him (his lips were bad enough that he could barely talk or eat), she agreed that he should stop the treatment. His 12 week appointment was coming up (the first week of July) and we would meet with her after his lab visit. Since it was the end of his treatment, she ordered some extra blood work.
The difference was really obvious; Dave was already feeling better, having not taken his medication that morning. He was so happy and relieved to be stopping the treatment.
An hour or so later, the phone rang; it was Mita. She wondered if a stronger GERD medication might help him. After he explained that he wasn’t having trouble with acid reflux but rather the medication itself washing back into his esophagus because of the hiatal hernia, she agreed that there wasn’t much he could do other than surgery. About 30 minutes after that phone call, we got another call from the VA hospital. This time it was someone from the GI department (or the pharmacy; we couldn’t tell because of their heavy accent and their phone cutting out enough that even the captioner couldn’t tell what they were saying). They wanted to put Dave on a different medication, since his viral load was so low and he was responding so well to the treatment. They said that it was an expensive medication and not one they normally prescribe, but they thought it might help. (It turned out to be generic Protonix, a PPI; Dave was already on generic Prilosec and it wasn’t helping.)
After speaking to this lady for a while, Dave agreed to give it a try. He wasn’t happy about it, but maybe this medication would do the trick. If it wasn’t for this one extreme side effect, he didn’t mind being on the Hep C regimen. We arranged to go to the VA hospital the next day to pick up the new medication, and Dave confirmed that he was continuing his treatment. He took his afternoon, dinner and evening doses and ended up just missing the one morning dose.
I asked him to explain what the treatment is like for him, since up until now I’ve been speaking for him. This is what he had to say:
The beginning 4 weeks of treatment was not bad: one shot of Interferon on Wednesdays and 3 capsules of Ribavirin twice a day. The day after the shot could be a little iffy but bearable.
After a month of this, they added the Victrelis which was 4 capsules three times a day.
My day would start at 5 am when I would take my thyroid medicine an hour before anything else.
The Ribavirin and the Victrelis both need to be taken about 20 minutes after you’ve eaten something with around 20 grams of fat; it helps with the absorption and helps minimize the side effects. I try to go with a couple of eggs and a bowl of cottage cheese. I was doing a tablespoon of coconut oil (14 g fat) but that got old quickly.
Seven capsules to start the day; usually the morning had less side effects than other times.
At 2 pm I had to eat another high fat meal and then take 4 more Victrelis. More times than not, I would get some of the medicine coming back up because of GERD. Oh, almost forgot, I also take two 20mg of Prilosec twice a day and a Tagamet before bed. They keep the acid component of the GERD down but don’t stop the reflux, which results in a constant nagging cough.
At 6 pm I take the Ribavirin again with dinner; not too bad.
At 10 pm it’s time to take the last 4 Victrelis of the day. We had to get creative with the fat for this because the number one rule with GERD is *DO NOT EAT BEFORE GOING TO BED*. Since I have to, we got some Reeses Peanut Butter Bars that have 14 grams of fat and not a lot of volume. Not ideal, but still better than most things I’ve tried.
In the last week something changed and the nighttime reflux has been incredibly bad. The medicine dissolves and then trickles back up while I’m sleeping, so when I wake up it’s like I have a mouthful of fertilizer. Yum.
The doctor has changed my GERD meds to something stronger but, ironically, this has just made it worse.
* * * * *
As he said, he’s been on the new medication for five days now and it’s not helping; he’s actually having worse symptoms that he did with the Prilosec. He keeps his lips numbed with the Lidocaine/Mylanta mixture, and I’ve re-worked our dinner menus so that we aren’t eating anything with tomato or things heavy in citric acid (lemon, pineapple). He was willing to give this new medicine a shot but at this point, he’s planning to stop treatment again on Wednesday, which is his next appointment with Mita. That way he can talk to her in person about the side effects and the fact that the new GERD medication isn’t helping.
He’s hoping that he will have cleared the virus by Wednesday. Normally that doesn’t mean that you stop treatment; you still continue on until either 28 or 48 weeks has passed (based on whether you’ve had treatment before, have cirrhosis or not, and how early you cleared the virus). They re-check your viral load six months after the end of your treatment to make sure the virus is still gone. This is most likely what they’ll do with Dave – re-test his blood in January 2014 to see what’s happening. If the virus has come back, he’ll have to wait until they have a new treatment protocol available through the VA before he can go through it again.
As always, we’ll keep everyone posted as things progress.
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!
It’s been a month of Hepatitis C treatment for Dave and so far, so good. We had our final class this morning to learn about the third medicine he just started taking today. It’s called Victrelis (boceprevir) and he takes four capsules every eight hours. This class was quite a bit shorter; the side effects are basically the same as for Ribavirin, with the addition of a possible rash or metallic taste in the mouth.
There are two other guys in this group along with Dave, but usually we only see one of the guys, Mr. S (and his wife) when Dave goes for labs every other week. The other guy lives pretty far away so I believe he gets his labs done at a clinic closer to his house. We do see him when the guys either have a class or get their next dose of medicine. So far everyone seems to be tolerating the medicine well, with no major side effects. Mr. S has had his Pegasys dosage lowered because of low platelets but that’s about it. So it’s encouraging that everyone is still going strong and hanging in there!
Dave’s numbers are all really good so far – his blood sugar is normal, his platelets went UP (!) and his hemoglobin is holding steady. All his dosages are staying the same for now. At this point, he’s now taking all the medications for his treatment; no new ones will be added in. (Thank God, because it’s already getting confusing keeping track of everything!)
He gets up at 5 am and takes his thyroid pill, since it has to be taken well before he eats. Then he takes three Ribavirin capsules and four Victrelis capsules at 6 am, with food (something with fat, to help the medicine be absorbed into his system). Another four Victrelis capsules at 2 pm, again with food that contains fat. Three Ribavirin capsules at 6 pm (usually right after or during dinner, to take care of the ‘take with food’ requirement). And finally, four more Victrelis capsules at 10 pm with, you guessed it, a bedtime fat-containing snack. He was jokingly complaining about the fact that he’ll never lose weight with all this food he has to eat, all day long! Oh, let’s not forget the PEG-Interferon shot he gives himself every Wednesday night at 10 pm (take it out of the fridge at nine so it can come to room temperature first).
And they aren’t kidding about the timing of all this, and making sure you really take your meds every day. If you miss even one day of the Victrelis medication, you are withdrawn from treatment and you can’t restart it – you have to wait for a new treatment protocol to come along for the VA, probably in 2015, because this one will no longer work.
Right now there’s been no change in his viral load – he got his first PCR test two weeks into treatment and we got the results last week, since they take a week to be processed. He got another PCR test today, so we’ll find out next week if there’s been any change yet. The big one is a month from now, when he gets his eight week test. If he clears the virus by then, it cuts 20 weeks off his treatment time. That’s huge!
That pretty much covers everything so far…we just need to see if the Victrelis will bring any nasty side effects with it. I expect Dave will be feeling pretty tired tomorrow since tonight is his PEG-interferon shot, plus he started the Victrelis today so his body will be adjusting to all this new stuff. (And he got his second Hep A & B vaccination today – he hates those shots! Luckily there’s only one more, five months from now.)
As of today, Dave is in his third week of treatment and so far he is doing really, really well. He hasn’t had any side effects beyond the ones he noticed right away – the dry eyes/skin, and being tired later in the day as well as the day after he takes his PEG-interferon shot. (In other words, we don’t plan big activities for Thursdays!) He was a little disappointed not to have the weight loss side effect; he was joking with me about a week after his treatment started, saying he was probably going to be the only one who gained weight while doing the treatment! Seriously though, he’s maintaining his weight and eating well. We never had bad eating habits to begin with (fast food once in a blue moon, otherwise we make all our meals from scratch with very, very little processed food involved). Now that the weather is warming up we can start taking our daily walks again. So all in all, this is going much better than we imagined it would!
The next monkey wrench will be when he adds in the third (and final) medication, Victrelis (boceprevir). I suspect this medication tends to give people rashes, because the Nurse Practitioner, Mita, mentioned this more than once. If he adds in the Victrelis and still doesn’t have any bad side effects, we’ll both be very relieved!
We went down to Hines VA hospital on Wednesday for Dave’s first official labs since starting his treatment. He doesn’t have diabetes, but the medication tends to raise blood sugar so Mita wanted him to fast just for this lab so she could check his fasting blood sugar. The lab opens at 7 and we live about 45 minutes away (by car) from the hospital. Dave usually takes his Ribavirin at 6 am, but he has to take it with food (to prevent stomach upset) and that meant he couldn’t take it until after his blood was drawn. We didn’t want to get his meds too far off schedule, so we headed out early in order to get him in right away for his labs. That would give us the chance to have breakfast in the hospital cafeteria so Dave could take his meds, and then he had an appointment with Mita at 9 am.
Dave was up around 4 am, and I slept in (!) until 4:50. Neither of us ate (he was fasting, I was fasting in solidarity with him) and after catching up with things online and getting an eBay order ready to ship, we were out the door a little after 6 am. We made good time and they took him right in when we got to the lab. After that we headed over to the cafeteria to get some much-needed coffee and some breakfast.
After we finished eating, Dave handed me the receipt for safekeeping. I noticed it had a little grid on it, so I took a closer look. Every item we ordered had the calories listed! I thought that was really cool, especially if you were an employee that ate at work every day. It’s so easy to overeat, but if you know ahead of time how many calories you’re consuming, it really helps. Of course, I didn’t notice this until after we were done eating, but it’s good to know for the future. I also belatedly realized that the calories were listed next to every item on the sign they had at the station we ordered from. I didn’t realize that at first; I thought they were numbers you could use to quickly order. (Kind of like when you go to Burger King and order a #5 or whatever.) Wouldn’t that have been hilarious if I ordered my food using the calorie counts?! Luckily I didn’t finish all of my food, and I gave my toast to Dave, or I would’ve ended up eating more calories than him (definitely not something I need to be doing).
Then we proceeded to walk off every single one of those calories…I should’ve worn walking shoes that day! We spent the next hour and a half walking all over the hospital, exploring. It is seriously huge! We even walked past a door ominously marked “Weapon Cleaning Room.” (!)
Mita had Dave’s test results, all except his viral load count, by the time we arrived for his appointment. His blood sugar was what it normally is, and his platelets went down a bit but they were still over 100 so they were still at the low end of normal. His hemoglobin was also lower than his baseline count from last month. She said if those numbers go down further, they might adjust his Ribavirin dosage. That also explains why he’s been more tired than usual. Other than that, his numbers were okay and she didn’t change his meds. We go back in two weeks, on May 8, for the third and final class and also for his next set of labs (not fasting this time). He’ll get his next month’s worth of meds and we’ll learn about Victrelis and its side effects.
I guess the viral load number takes a while to process, so Dave is calling on Monday to find out what it is. Hopefully it will be much lower; this will show that the medicine is working and clearing the Hep C virus. The goal is for the virus to be cleared by week 8…if that happens, his treatment will go on for another 20 weeks and he’ll be done. Much better than being in treatment for almost a year!
After the appointment, we headed down to a health fair the VA had going on in their auditorium. It was very, very loud (as those types of events tend to be) but if you got 15 signatures from various booths, you were entered into a raffle…and Dave was determined to enter! We had a good time going around and talking to everybody. Back in the day I would never try to make small talk with so many people in such a loud environment; I would hang back next to Dave and just listen (and smile).
We stopped at a booth dedicated to both colonoscopies and Hep C treatment. Mita was supposed to be manning the Hep C portion but she was still running her clinic, so we chatted with the colonoscopy fellow. I snagged a book, Colonoscopy for Dummies, and when we got home I left it in the bathroom for some appropriate bathroom reading. Dave came out that evening, waving the book at me (he does not ever, ever want to be reminded of his colonoscopy prep, which he claims was worse than going through chemo). He said, “Why is this in the bathroom??” and without a beat, I said, “Well, it’s the most appropriate place in the house. You can read it and it will scare the shit out of you.” It caught him off guard and I must say, we got a long, much-needed laugh out of that!
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!