I am a 57-year-old white American male infected with Hepatitis C. I am involved in a controlled medical research study by Roche Pharmaceuticals of an experimental Polymerase Inhibitor (RO5024048 also known as RG7128) drug therapy for the virus. This document is the story of my illness and the experience of treatment. My lovely and pretty damn wonderful wife will be contributing her take on the experience as well.

Wednesday, March 31, 2010

Baseball Adds Life

“People ask me what I do during the winter when there is no baseball. I tell them that I sit at home and look out the window and wait for spring.” Rogers Hornsby, member of Baseball’s Hall of Fame.

Thank god for opening day. Thank god for spring and the activity that heralds the coming of summer and better times: spring training. Nothing quite lifts the spirits like the sound of a bat hitting a ball, the smell of the grass, the feel of the sun on your face and your arms. The feeling of tiny drops of sweat popping out on your arms and your face as the warmth soaks in. The gentle slide from day to evening and evening to night and the perception of the lights taking effect as the darkness descends around the field. The pop of the catcher’s glove as the fastball darts across the plate. The chatter of the players against the backdrop of the continuous hum of the crowd. The sound of the announcer listing the batting order and naming the players as they step up to the plate. Taking the cardboard off the top of a frosty malt and digging in with your wooden spoon. All these sensations and more that herald a new season and a chance to watch your team through the long summer just like you have for 20 or 30 or 50 years. It banishes the other cares and worries and lets you experience an afternoon or evening purely on its own terms. I’m sure you’re getting the idea that I love baseball and am a lifetime fan. It has been an eagerly anticipated summer activity since I started playing catch with my brother in the backyard when I was 7 or 8 years old. It has never been more anticipated than this year.

It has been a long, cold, wet winter in the SF Bay Area. While we didn’t get the massive blizzards and frightful cold that afflicted other parts of the country, we did get day after day and week after week of damp, cold weather. The sort of damp cold that seems to soak into your bones and take up permanent residence. It is not helped much by the fact that most old houses in the Bay Area are poorly insulated and not well served by their furnaces and most of the light industrial spaces are not heated at all.

I really noticed that I was really dragging about 3 weeks ago. The treatment has made me much more susceptible to cold and becoming chilled and I was cold all the time. I also had a cold (which, curiously enough, refuses to leave), no energy and shortness of breath. It was light for only a short time before I went to work and was usually dark by the time I got home. I was frustrated, pissed off and not the most pleasant person to be around.

But then daylight savings time kicked in and the months-long cold weather lifted. It was light out, with actual sun, and I did not have to wear a short sleeve t-shirt, a long sleeve t-shirt and a sweatshirt at work. I could take off the fingerless gloves that make keyboard work such a joy. And the Giants began to play spring training games and those games were on the radio.

For the last two to three weeks, I have had more mental spark (in not more actual physical energy), I have felt less depressed, less angry and have begun to talk to people more. My wife claims I have begun to rant about the doings of the local politicos and people in the news, which she takes as a sign, my personality is returning. This weekend, I will journey to the south for the annual ritual of my fantasy baseball auction (said auction being something I have done in one league or another for 27 years now). The preparation for the auction, the following of scouting reports, the attempts at trades with my fellow owners, the updating of my lists and charts has brought me out of the doldrums and genuinely back to life.

The last few days have been the night sweats phase of the weekly interferon cycle. I have recently returned to a full dose of interferon from the ¾ dose I have been doing for the past 9 weeks and that has also meant the return of chicken-skin rash and itching to my arms and lower legs. The full dose has also meant the return of more aggressive insomnia and generally restless sleep. All of these suck, to use an honest but not particularly artful term, but I have actually not been letting them bother me. Sure I have to change t-shirts and sheets and be more disciplined about my behavior to try to help me sleep, but I am also getting up each morning and checking the players out online and reading the local sportswriters, (no matter how stupid their material) and looking forward to what will happen during the day. Baseball and Spring have made a huge difference in the trajectory of my treatment.

AVB, the study coordinator, talks about how everyone hits the wall at some point during treatment and how you have to find some way to fight through it and continue to have the best chance of success. I am not sure if this was my wall or just a hurdle, but having a passionate interest in something to take my mind off the treatment and push it back to being a part of life and not the thing that dominates life has been, to use the pathetic cliché of the sportswriters, “a difference maker.”

The treatment regimen made me much more aware of the effects of the seasons on my mental outlook than I have ever been before. It is something I have to remain aware of as the treatment wears on. Some of the feelings and effects are dictated by my own responses to my environment and not entirely by my responses to the drugs. My environment has improved and my life is better.

So whether it is getting out and riding no matter how bad you feel as the guys over at Hep C Straight Up do or turning on the radio an listening to Glen Kuiper and Mike Krukow announce a Giants game as you work in the yard, find something you love and dedicate yourself to enjoying it as often as possible. And keep your sheets dry if you can…

Friday, March 26, 2010

Staying Hydrated or The Water Dance

One of the simplest, most straightforward ways to try to moderate some of the effects of the drugs you take to treat your Hepatitis C is to drink a lot of water and stay hydrated. There are many recommendations as to the amount of water you should try to drink every day, but one of the most common recommendations is to drink ½ ounce of water for every one pound of your body weight. This is a simple, easy to remember formula that you can use to figure your optimal water consumption. Easy to figure; yes; easy to actually do every day, not so much.

I offer myself as an example. I am currently about 185 pounds. Since I get weighed every single time I show up for testing, I am a lot more aware of my weight right now, than I usually am. If you divide my weight by 2, you get 92.5 which is the number of ounces of water that I should drink every day to feel my best. Ninety-two and one half ounces is almost 3 quarts of water per day. That is almost twelve 8-ounce glasses of water, eight 12-ounce cans of soda or six 16-ounce bottles of water. That’s a lot of water to drink every day. The advice about drinking water also includes the warning that it is probably not a great idea to drink much water after about 8 p.m. or you have the chance to be up several times at night to go to the bathroom.

I get up every day around 6:30 a.m. I stumble downstairs, put a kettle of water on the stove and make a cup of green tea (about 8 ounces). I drink green tea because it is about the only way I can have any caffeine any more without completely turning in to a jittery wreck. I need caffeine, at least at the crack of dawn, because I am NOT a morning person and in order to communicate at even the most rudimentary level, I have to have a little. Then I read the paper, dress, eat a bit of breakfast, make my lunch and head out the door. By a touch after 8:00 a.m. I am at work.

This means that I have 12 hours to hydrate myself before I have to stop to avoid endless nighttime bathroom trips. So I have about 90 ounces of fluid to drink over the next 12 hours, about 8 ounces an hour on average. That’s a lot of water and a lot of times to remember to drink some. It’s easy to work for a few hours straight and forget to drink anything and then drink a lot and then repeat the behavior throughout the day.

This seems not so much a big deal until you consider two things. The first is that I have been given through the magic of heredity, the gift of a smaller than normal bladder (thanks mom). Ever since I was a little kid, I have had to use the bathroom more than the normal person. The second consideration is that I am a male over 50 years old. This is known as the enlarged prostate demographic. So I have a somewhat enlarged prostate pressing against my somewhat smaller than normal bladder. This results in a somewhat greater than normal number of visits to the bathroom throughout the day. Actually this means that if I drink the recommended amount of water every day, I am visiting the bathroom every hour on the hour.

On the bright side, you get to see a lot of co-workers regularly, and, if I bring my cup with me to the bathroom, I can drink a nice glass of water on the way out the door and both stay hydrated and set up my next visit to the loo. This is all relatively easy to manage on the job. I am in a building, the building has a bathroom, I visit the bathroom as needed. Outside of work it is not so easy. If I drink the recommended amount of water on the weekend or in the early evening when I am out and about, my recreation is overshadowed by the constant need to find a bathroom. One thing you can say about cities in the USA is that easily available restroom facilities are not high on the priorities of city planners, landscape architects, architects, or city governments.

We are all familiar with the pressing need to relieve oneself and the physical joy of finding that relief. Now imagine that scenario playing out several times a day during a shopping trip, a hiking outing, or a visit to a cultural event. That is what I call the water dance, or more accurately, the making water dance.

Staying hydrated helps your energy, staves off the feelings of nausea and upset stomach and gives your skin that healthy glow that fools people into believing you are healthier than you feel. I will gladly, on occasion, endure all the feelings of nausea or upset stomach if it means I can forget about having to plan my day around the length of time between bathroom visits and planning my daily route around available bathrooms. I’m sure I could go on longer about all this but, you guessed it, I have to go the bathroom. Where is my water glass…

Wednesday, March 24, 2010

Biopsy Is Just Another Word For Really Big Needle

While drifting through limbo in the late spring of 2009, I decided to get a liver biopsy. A biopsy can be a scary concept for a lot of people. The basic process is to take a big needle and push it into your liver to get a small sample of tissue along the length of your liver. They look at it under a microscope and determine what stage the damage to your liver is at.

I decided to get a biopsy because all the reading I had done about Hep C had indicated that only a biopsy could actually tell you how far the damage to your liver had progressed. Blood tests can show the level of liver enzymes and elevated levels can indicate different levels of damage. Blood tests can be problematic for a number of reasons. You can show very little enzyme elevation even though you have advanced liver disease. Conversely, you can show high levels of liver enzymes (me) and potentially be at an early stage of the disease. Ultrasound and CAT scans can tell the size and external condition of the liver and give some information about fatty deposits and granularity of the liver, but the only way you can actually see what stage the inflammation and scarring are at is to look at the tissue.

I talked to my gastroenterologist about a biopsy and mentioned that it seemed to be the only way to be sure of the condition of my liver and that it would give us a baseline to compare with moving forward. He agreed with that assessment and did a thorough job of going over the procedure and possible complications. The major complication is internal bleeding that can occasionally be difficult to control. Another is the possibility of bile leakage.

The actual procedure was pretty straightforward. It was done on an outpatient basis and took a full morning for the procedure. It was done in a “twilight sleep” state rather than full anesthesia. They prepped me and took me in to the procedure room. My wife was actually able to accompany me all the way to the door of the room, which made her much happier and more relaxed. When they moved me to the table and laid me on my side, the anesthesiologist laid out her syringes. When I saw her lay out 3 syringes of Fentanyl, I realized I was not going to be feeling a thing. Somewhat more at ease, I made the mistake of looking back over my shoulder. Doing so, I saw the doctor removing the biopsy needle assembly from its blister pack. It is the longest needle I have ever seen. I don’t know how long it actually is, but it looked like it was about a foot long and the width of a ten-penny nail. I immediately looked away and made sure not to look in that direction for the remainder of my stay in the procedure room.

They shot me up with all the requisite drugs, rolled me on my side and said, “when you hear a click, it will be over.” I felt absolutely nothing, heard a click a few seconds later and it was over. They taped the wound, rolled me over so that the weight of my body pressed down on the bandage, told me to stay that way and sent me back to recovery. The whole stay in the room for the procedure was about 5 minutes.

They kept me for about 90 minutes to wait out the sedatives and monitor the bleeding from the wound and to determine if they could detect any internal bleeding. Every thing went fine and I went home and slept the rest of the afternoon.

The good news was that the biopsy determined I had stage 1 liver disease. This is the earliest stage with the least damage. Doctor C told me in the follow-up discussion that this result bought me time to consider all my options regarding how to proceed against the Hep C. I was not in any immediate danger with my liver, so I was not under pressure to do something before I was ready. This was exactly what I needed to hear. It gave me the space for a lot of serious research and thought about the possible routes I could take with the disease.

The important part of this whole process was the fact that the liver biopsy is not as traumatic as a lot of folks I have talked to believe it to be. While there are risks as with any medical procedure, the sure knowledge of the state of your liver is a great help in deciding how you want to move forward in dealing with Hep C.

Tuesday, March 23, 2010

Sitting In Limbo

After not getting in to the Vertex – Telaprevir study in January of 2009 and being thrust into a primary management role in my employer’s reorganization and construction project in early 2009, I ended up in limbo regarding my plans for dealing with Hep C. I was so exhausted from running the project that I did not have the energy and mental focus to make any informed decisions.

One of the good pieces of fallout from not being in the study was getting to meet the team at the California Pacific Medical Center (CPMC) Hepatology Center. The study coordinators are not only intelligent, empathetic people, but they genuinely felt bad about the circumstances of my not qualifying for the study. They knew that the bad test result had been a result of a lab testing glitch and that I was a good candidate for being in a study. So they kept me informed of the various studies that were in the pipeline at their center. I told them that I would not be able to do anything until the summer as I needed time to recover and get the new systems at work up and running. But as soon as May and June arrived, I began to get phone calls about studies. I turned down one that was an early phase 1 trial of another protease inhibitor as it was a short (4 week) trial to determine whether the drug had any efficacy against the Hep C virus. I did not want to do a short course of treatment. When I committed to a program, I wanted to have it be for a full-term course of treatment designed to wipe out the virus. I also did not want to give up my treatment-naïve status unless it was for a serious, later stage study that was trying to determine whether the test drug was good for a cure, not just good for some effect against the drug.

Treatment-naïve means that you have never taken drugs to combat Hepatitis C. This is the state that most researchers look for in test subjects. They want to test their compounds on people whose Hep C virus has never had the chance to react to any attacking drugs. You are only treatment-naïve once. As soon as you have taken drugs to attack your Hep C, whether it be the standard Interferon and Ribavirin therapy or a drug study involving alternate or additional drugs. So, if you are considering entering a medical research trial, you may want to protect your treatment-naïve status until you see a study you like. Of course, if you are in serious later stage liver disease, you take the treatment that sounds best to deal with the situation you have and the hell with preserving treatment-naïve status for the future.

There are also studies for treatment-experienced patients as well. These studies are often somewhat later phase 2 or 3 studies that are trying to determine if the study drug works were other drugs have not. Let’s face it, if you can develop a drug that not only can cure Hep C in treatment-naïve patients, but also can cure the disease in people have tried other treatments and failed, you are looking at a much bigger slice of the treatment money pie. So drug companies all want to know if their drug works where others have failed. There is no need to despair of being able to access experimental therapies just because you have already tried a drug regime and failed. This is a thought that I hold clearly in my head when I think about the possibility of relapsing after the trial ends. I can still go for other options, assuming I want to go through this experience again.

So I was indeed drifting a bit, trying to see if an interesting study came up and indeed thinking about the whole necessity of entering treatment Right Now. As the immortal Jimmy Cliff would have it, I was indeed sitting here in limbo, waiting for the dice to roll.

Monday, March 22, 2010

Ribavirin, You Take My Breath Away.

Friday the 19th I went in for my week 14 tests. I have now been off the RG-7128 aka RO5024048 study meds for two weeks. They took the usual 15 vials of blood. AG, the other study coordinator, told me that one reason she likes Roche studies is that they do a lot of testing for safety. She said they are concerned about certain test results and side effects that some other drug companies view as peripheral. That is some comfort although the constant returns to the lab for retesting and redraws of blood is grinding me down.

The good news is that the Viral Load remains undetectable. It has now been 6 weeks since I went undetectable. This is an excellent result and makes continuing the study easier to do. Having an EVR is a positive sign for obtaining a sustained viral response (SVR) and being declared cleared of the virus (the doctor’s term) or cured of the virus (the drug company’s term).

The bad news is that my hemoglobin is down to 9.9 on their scale. Normal hemoglobin is 12.7 – 17.00, my baseline was 14.8; this means I am now short about 33% or one third of my hemoglobin and boy does it show. I was walking along the waterfront in San Francisco on Sunday with my wife. I was a short walk of about 1 mile round trip. I had to sit down at the halfway point. Even though I know the reason for it, this just drives me crazy. I hate not being able to physically do the things I would normally be able to do easily. Imagine for yourself doing all the things you normally do during a day only doing them with one third less oxygen in your blood. It tends to make you take things quite a bit slower.

I did a Saturday shift at my job a few weeks ago. This involved running a book sale and boxing up the books after the sale. I had some volunteers to help and they did a great job, but I had to do a lot of boxing and lifting. When I got home, I soaked in the tub for an hour or so and went to bed early. While the next day wasn’t bad, the following Monday, I was barely able to stay awake at work and my boss sent me home early because I looked so exhausted it was beginning to depress our (mostly much older than me) volunteers.

All this keeps bringing me back to what I read in one of the Hep C books, “be patient with yourself, you will not have the same capacity you did before starting treatment.” The book has it exactly right. The problem is actually being patient with yourself. If you had any level of energy and drive before starting treatment, the state you find yourself in whilst on treatment will depress the hell out of you.

I had a great conversation about this with my kid sister the other day and she told me to put down the date I will be ending treatment on the calendar, and to plan to celebrate it in some way. She emphasized that it will be over eventually and things will return to normal. Her advice was that prominently noting the date of the end of treatment would reinforce the concept that there is a definite end to the process. I wonder if spray-painting the date across the front of the house might be going too far; maybe a neon sign? Whatever will put the idea firmly in my head that this too will pass is what I want to do.

One last thought comes to mind about all this. There was a closing page article in the latest Liver Health Today about a guy in Texas who is doing very well while on treatment. He is a hemophiliac with HIV and Hep C. He got himself into top shape over the past few years and has been riding in 100-mile bike races. When he started Hep C treatment, he noted that it slowed him down for a few weeks, but that after a few months he was back and the bike and recently rode in a 150-mile race. He attributes his success to being in shape and to his Christianity. I can’t dispute any of this and in fact I applaud him for his dedication and his ability to deal with adversity and challenge. At our support group, the overwhelming feeling was that stories like this are in some ways inspirational but in many other ways depressing. One of our folks did a 72-week stint of treatment and there were times she could barely move around her house, she was so exhausted. Others talked about being thrilled that they could ride a bike for a bit or going to the golf driving range. Not one of all the people I have talked to who have gone through treatment came close to this gentleman’s achievement. So, is it inspirational or is it egotistical to report these sorts of stories. Don’t know, but the vast majority of us are more in the middle of the bell curve and might be able to use a bit encouragement and advice that actually seems possible.

Tuesday, March 16, 2010

Deciding About Treatment - did I avoid a disaster?

I few posts ago I wrote a bit about Questions you need to think about in regards to treatment.

Let me tell you about the first time I made a decision

It was my second visit to the Gastroenterologist, the fabulous Doctor C. The first visit was relatively brief in that we went over a bit about the disease and he order a full set of labs to determine the genotype of the virus, the viral load and a bunch of liver function tests as well as some general blood work. The primary result of the visit was to realize that I had a great doctor on my side. Doctor C is a warm, supportive personality and also a doctor who Listens. He is not one of those folks who are merely waiting for a chance to talk when he is silent. He listens carefully, gives considered answers and is well versed in the details of the disease. He is not a certified Hepatologist, but he does a great deal of work with coinfected HIV patients and is up on the research and the treatments for Hep C.

The second visit was more detailed as we went over the results of the labs. The bad news was that I had genotype 1 which is the hardest to cure. It is also the one infecting the vast majority of North Americans. My viral load was over 4,000,000 IU per ml. which put me in the category considered to be medium-high viral load. My liver seemed to be in good shape with the various enzyme and function tests not indicating there was much damage. By this time my wife and I had read a great deal about Hep C (interestingly enough for those of you following the progression of side effects, I have forgotten a great deal of that information and have to keep looking stuff up to refresh my memory). We had lots of questions and Doctor C took a great deal of time answering them. Then he asked the fateful question. Do you want to be aggressive in your approach to the disease?

Yes, I replied. He told me that he knew of one of his colleagues currently enrolling a study for a Vertex compound VX-950 (now Telaprevir) and reached for the phone. He caught the doctor in, set up an appointment for two days hence and I was in the process of potentially beginning treatment for the disease. I spent the next 2 days doing research on VX-950. It is a protease inhibitor in phase 3 testing and has a Sustained Viral Response result of 62-64% in trials when it is combined with the Standard of Care (Interferon and Ribavirin). The study in question was an open label phase 3 study wherein every participant got the experimental drug; they were just testing for dosage effects. I admit I had a romantic fantasy about the possibility of being in the study: Man is diagnosed with Hep C on Halloween, goes into treatment in January, finishes treatment in December and is declared clear of the virus under 18 months after being diagnosed. We all have our fantasies, mine are usually not about drugs, but this time they were.

I went to the meeting, learned about the study, was told about the drug and the SOC side effects, signed the papers and went in for the lab tests the next day. It turned out that I showed a thyroid abnormality in my blood tests and there was not enough time to get me retested by the official lab in time to get me into the trial. So close and then the chance for the experimental drug was snatched away. It was particularly painful at the time because there are so few phase 3 tests of promising drugs and so very few tests as well wherein everyone gets the experimental drug and there is no placebo group.

As it turned out, it was probably for the best that I did not make the trial.

The next 3 months were spent in an extremely high-stress situation. My organization was moving an entire portion of its operation into a new space. I had been managing a great deal of the operation for my boss, who was in the middle of number of large projects. In January as the facilities move hit is most vital period, his wife became dangerously ill and they suffered a financial reverse which threatened to wipe out their life savings. I had to step forward and assume control of the entire project and manage it through the actual move and start-up of the new facility. I managed to do it, but the cost to my health was extreme. I was exhausted all the time. I went home from work every day and was capable of merely sitting for a few hours before going to bed. My wife is convinced to this day that the stress load spiked my viral load from the 4,000,000 range to the 6,500,000 number it hit in my next test in June.

If I had been going through treatment, I would never have been able to handle the job that was thrust upon me. I would most likely have collapsed either physically or mentally due to the strain. So, even though I lost the chance to get a late-stage experimental drug which raises SVR rates 40% above the standard of care treatment, my health may be better in the long run for missing the opportunity.

I did not examine all the ramifications of my decision before I made it. That is why it is so important to examine all sides of the issue before you reach a decision. It is hard to go through treatment. Even at its best, it is tiring and depressing and long. So think clearly and try to plan for as many eventualities as you can. It can make the difference between a successful outcome and something potentially very ugly.

Saturday, March 13, 2010

Getting’ Sweaty

Hep C can certainly play havoc with your laundry schedule. This next piece of information may be revealing a bit more about our home life than my wife is comfortable with, but we generally change our sheets and such on a weekly basis. I know there are some of you out there who change linens on a daily basis. I also know there are some of you out there who change sheets somewhat less than on a weekly basis, some of you (you all know who you are) way less than that. Weekly has always seemed to be a reasonable interval to me.

No doubt that has something to do with my upbringing. My mother did our sheets on a weekly basis. The bed-changing day was a big day. We got to tear everything on our beds apart and drag the sheets down the hall to the bathroom where the laundry chute was. For those of you who never lived in a house with more than one floor or without a basement, a laundry chute is narrow chute running from the top floor down through the house, with doors on all intervening floors, that ends up in basement. Usually there is a box placed beneath it wherein all the laundry thrown down the chute collects and from there is dragged to the laundry room, sorted and washed. You threw your sheets down the chute, stuck your head in after and watched them slide down and end up in the box. When you are six or so, it is a great deal of fun. Sometimes, not that I ever did this of course, a large pile of clothes was left in the chute and an individual climbed into the chute and slid down into the pile of clothes – with a much harder landing than the individual supposed there would be.

Having this weekly event indelibly etched in my mind, my adult life was similarly patterned, except of course when I single and living in a warehouse and had not the motivation to launder bed linens so frequently. That being in the past, my wife and I have comfortably lived with a weekly pattern for some considerable time.

Interferon sure puts the kibosh on all that. Last night was a prime example. I injected in the early evening and we went to bed at our usual time of around 10:30. By midnight I was up and had sweated enough to soak the undershirt I was sleeping in. I changed, hanging the other to dry. By 3:00 I was awake and soaked through again so I changed again, hung again and went back to sleep. Waking at 4:30 to serious dampness again, I changed, hung and went back to bed; a three shirt night. Needless to say the sheets were a bit damp as well, at least on my side of the bed.

This used to happen each and every week a few months ago during the early weeks of treatment. I would change the sheets on Saturday, sweat like a pig that night, change the sheets on Sunday, and lather, rinse, repeat. You get the picture. Every week was a marathon of linen washing, not to mention the sheer number of t-shirts I went through. I haven’t been that intimate with a washing machine since my mother made me “help” her with the laundry when I was a lad.

Luckily all that had calmed down a bit and we were down to only having to change the linens maybe twice weekly. Until this dose. I wish my damn body would just adjust to these meds and give me some sense of consistency. Maybe it has to do with being off the experimental drug? But if I am going to go back to multiple washings and changings per week, we may need to invest in a dryer. Hanging all those sheets to dry every week makes us look like we are operating something more than just a single family home over here.

Really folks, its just me, getting sweaty with my meds, the old-fashioned way. And only 35 more weeks to go – maybe a new washer too…

Wednesday, March 10, 2010

You Give Me Fever

Five days after the last post and I still have the Flu and I still feel like hammered dogshit, as my boss would say.

I guess having a low lymphocyte and neutrophil count can indeed counteract the helpful effects of Flu vaccines. It’s not a terrible case of the Flu as those things go, but as all of us who have had it over the years know, you sure don’t feel like doing much of anything. Add to that the fact that doing much of anything sure does make you feel like going back to bed and you get a lot of days of not much getting done.

And then there is the fact that my job running an online store means that every day there are orders to fill and inventory to track means that I am probably working at least a few hours every day and then I get too tired to think and go home. So at the end of the day, or really in the middle of the day or even at the beginning of the day, I don’t have a lot of worthwhile thoughts about the nature of my condition or the world, or the world of my condition.

So I don’t have much to say right now other than that I am so glad I have a home to recuperate in and a lovely wife to ask me if there is anything I need her to get at the store on the way home. There are a lot of folks dealing with all this same stuff who don’t have the same level of support and if you know someone like that, take some time out and do what you can.

Friday, March 5, 2010

Good Days and Bad Days

Before I started treatment for Hep C, I did not give a lot of thought to Good days and Bad days. I certainly had good and bad days and they were straightforward to identify. Fight with my wife, Bad day. Finish a piece of art, Good day. Stuck on the bridge because of an accident, Bay day, the two starting pitchers on my fantasy baseball team that day both win and throw shutouts, Good day, etc. etc. But the majority of days were just days, some good elements, some bad elements, a lot of generic, average elements. That all changed with the onset of treatment.

Much of the advice that you get about how to approach treatment, how to manage it and how to respond to it, involves not letting it take over your life. You have to continue to live your life as much as possible, that is why you are undergoing treatment, to have your life be about your life and not about your disease. But invasive drug therapy for any disease for which it is required, has a way of making that difficult. Some therapies are periodic and regular. You go in for chemo once a week, or radiation for a few times a week for a month, in other words, a regular defined pattern of treatment. With Hep C, it is a defined treatment regimen, but there is both a daily and a weekly portion of the regimen and the total treatment generally is a minimum of 48 weeks. The weekly interferon injections build up over time to eventually give you a high constant serum level of interferon and the daily Ribavirin keeps that drug at a steady serum level as well. This creates a situation that gives you a constant set of side effects that do not fluctuate in the same way as someone who gets a chemo dose once a week. The side effects may vary individually on a daily basis, but the fact that you will be feeling side effects every single day is constant throughout the length of the treatment.

So you get attuned very quickly to Good days and Bay days. Nausea and dyspepsia, Bad day; Walking up stairs without gasping at the top, Good day; Feeling some energy and enthusiasm, good day; realizing that you said a total of 10 words to your co-workers over the course of the day, bad day – these things become signposts of your days and can easily begin to take over how you feel about your life. You can find yourself sitting inside at home instead of getting outside for a walk or talking to a neighbor or calling your sister or any of the vast number of things that can keep you connected to your life.

A Bad day with the treatment does not a Bad day make. You can have nausea and cramps for most of the day and have a wonderful conversation with an old friend in the evening that makes any day a Good day. You can feel exhausted and breathless and then pick up some take-out food and a movie and have a wonderful night with your family and have a Great day. You can also screw up a day when you are feeling physically good and mentally sharp by having a verbal dustup with a coworker.

This is all very uplifting and such, but the reason I am musing about this is that having the flu on top of Hep C treatment, is a Bad day. And the Bad day lasts several days. I have spent whole days inside the house on weekends when I was dealing with interferon doses but at least felt like I could leave the house. I felt that it was somehow my choice that I was a hermit, that I could get out if I had enough juice, a good reason. When you have the Flu, you don’t really go out unless there is not choice. I don’t want to be the typhoid guy who infects everyone so I don’t go out. This drives me crazy in normal flu years, but given the fact that exhaustion from the Hep C treatment has given me more days in the house than normal this winter and it really feels like a run of Bad days.

But hey, I am about to send an email to an old friend about visiting on Easter weekend, and I will be calling my mother after that. I am trying not to have my life defined by my treatment, but it can certainly creep up on you quickly if you let down your guard.

When baseball season starts, that will solve everything (really, everything). How bad can a day be when there are box scores to read and games to listen to on the radio? The baseball diamond can be a strange place to see a pattern to the universe, but it’s as good a place as any.

Thursday, March 4, 2010

Up, Down, All Around

There are ups and downs to this research regimen. Yesterday, I went in for my 12-week tests. I am finishing the experimental drug tomorrow. They needed to determine how fast the drug disseminates into the bloodstream, so the time of the testing was controlled so that they could take blood samples at specific times after I had taken my dose of the meds. None of this is a particularly big deal, it just means a bit more time and a few more questions to answer. It is interesting to note that, despite the attempts to make these tests consistent and rigorous, the human error factor rears its head from time to time. In previous visits, they have forgotten to take my weight, in this test they took my weight, but forgot to take my blood pressure and temperature. I’m sure somebody got a ding for that as they have been quite concerned about the state of my blood pressure throughout the project thus far.

I came in to this visit with a sore throat and told AVB that I had the sore throat, some coughing and nasal stuff. We also discussed the side effects, which ones were decreasing (itching, general cough, irritability) and which were either steady or increasing (fatigue, shortness of breath, muscle weakness). I then went off for the blood draws for this round.

They took 17 vials of blood. The blood guy (who has been drawing my blood for several visits now) estimated that it was from 18-20 ounces of blood. This is roughly the amount that they have been taking since the beginning of the test. So they took about a pint at the start of the test, at weeks one, two, four, eight, ten and twelve or roughly 7 pints of blood in 12 weeks. Despite their claims to the contrary this has to be stressing all my systems. This is a lot of blood to be replacing in normal circumstances, but given that my red cell and white cell producing systems are both being suppressed by the Interferon and Ribavirin as well as some additional white cell suppression by the RO5024048 Polymerase Inhibitor, I can’t believe it is without consequences.

I think I am living them now as the sore throat and developed into a full-blown flu-like outbreak last night and today. Mild fever, productive cough, sore throat, all the delights of flu. Sure I could have developed this anyway, but somehow having over a pint of blood withdrawn just while it was coming on seems like it must have contributed to the onset. Who knows? I did get vaccinated for both strains of flu this year and that has to help, but I think that if the timing of all this were different, I might have a milder case of this. In any case, I’m going to delay my Interferon injection for a day to give my immune system a bit of help before dosing it again with an inhibiting agent.

The good news: Still Undetectable. It is now officially 3 taqman tests showing undetectability. This is great news and I will celebrate accordingly when the flu goes away. Really, I promise.