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.

Tuesday, September 11, 2012

Liver Walks and Liver Disease PR

I've always wondered why folks with liver disease didn't organize events focused on Hepatitis, Liver Cancer and the other diseases that can devastate the liver. Was it the broad diversity of the afflicted group? Embarrassment about admitting to the disease? Shame about the possible, or definite, way the disease was acquired? Indifference due to the long time-span the disease takes to get really serious? A combination of all these? Who knows?

I arrived in San Francisco during the mid-1980s. It was ground zero for the raging AIDS epidemic. The AIDS afflicted community, mostly gay, began to mobilize early on to militate for research, awareness campaigns within the community, demand for drug research, medications and for companies to supply medications affordably. Perhaps because so many shared a common sexual orientation and a definite us vs. them mindset, the community was more predisposed to organize. Whatever the reasons, the AIDS community jumped in with both feet and as a result, AIDS awareness, research, drug availability and prevention education garner a great deal of attention throughout the country.

It looks like the liver disease community is starting to mobilize as well. The Fair Pricing Coalition  has been active in protesting the costs of treatment drugs, celebrities with liver disease have begun to come forward, and finally, The Liver Foundation is sponsoring a series of  Liver Life Walks in cities across the USA.

The Walk for a cause model is one of the oldest and most effective tools for raising awareness of a cause. It spreads far wider than the walkers themselves as family members, friends and sponsors of the walkers all become more aware and more likely to be talking about the theme of the Walk. It is also great therapy for the participants as they can band together to say that the status quo is no longer acceptable.

I urge anyone who has Hep C, knows someone who has it or, sadly, has lost someone who had Hep C, to join a walk, support a walker, or just talk about Hep C if the subject comes up. The more people know about it, the more likely they are to get tested, seek treatment and live better lives.

As my lovely wife put mentioned in the previous post, we formed team Heprat for the SF walk and will be walking the, extremely civilized 1.5 mile, course this Saturday, Sept. 15th. The week after there is one in Mpls/St. Paul, MN. and so on and so on. As the street hawker might say, Check It Out!

Saturday, September 8, 2012

Support Team HepRat For the September 15, 2012 Liver Life Walk in San Francisco

I've joined the Liver Life Walk in San Francisco as part of Team HepRat, in honor of my husband, the author of this HepRat blog, who has recently struggled with liver issues and the side effects of current treatments. Visit this link to read more or support our cause: GO TEAM HEPRAT!

Tuesday, August 21, 2012

Long Term Side Effects: Everything is a little bit hotter.

My core temperature has changed.

I was out at the Beach Chalet restaurant this past Sunday with my wife and a few friends listening to one of our favorite bands, the Aqua Velvets. The restaurant itself is just across the Great Highway from the beach and a perfect setting for the Surf Jazz the band features. It was a typical San Francisco summer afternoon with a bit of fog and a very slight breeze that, thankfully was shielded by the of the restaurant building. The temperature was in the mid-60s. I was wearing a T-shirt and a long sleeve dress shirt that was unbuttoned over a pair of jeans and I was perfectly comfortable. I was thinking about it while sitting there and it reinforced the fact that one of the long-term side effects of the of the hepatitis C chemotherapy treatment process is that my temperature comfort level has moved a bit lower on the spectrum. In the old days on an afternoon like that I would've been wearing a sweatshirt at least and perhaps even a light jacket over a sweatshirt. The breeze would've chilled me, my hands would have been cold and while I would have stayed and listened to the band, I would not exactly have been comfortable.

Now however it seems I am much better suited to the San Francisco climate. Many days I wear an undershirt with a long sleeve shirt over it,  either a T-shirt or golf style shirt or a button-front dress shirt and that's all I wear (except for pants, I still wear pants even after chemo...).  I generally don't need to wear a jacket or I can carry a light fleece jacket with me to can put on only in the evening when the temperature drops into the very low 60s or the wind kicks up. In the old days, pre-treatment, I would always follow the San Francisco prescription of dressing in layers with a shirt, sweatshirt and jacket always with me and most often all worn at the same time. That is no longer the case.

 Many of the long-term side effects that have stayed with me since the hepatitis C chemo are not ones that I have enjoyed or have not been ones that have benefited me in the long term. This one however is definitely an advantage. While I am no longer is able to tolerate warm temperatures as well as I was in the past and truly hot weather really leaves me exhausted, that's not the sort of weather that we have very often in San Francisco. Now I appear to be better adapted to my environment and I can tolerate the city that before I always used to find much too cold for my taste.

If global warming really intensifies in the long run, this and may not be an advantage. But for right now and for the next few years it may very well end up being the best side effect of being treated for hepatitis C.

Monday, June 25, 2012

The Day My Energy Returned

For the first several months after completing the ribavirin and interferon standard therapy I still had a  very low energy level. It wasn't exactly exhaustion but it was a situation wherein if I did anything more than normal exertion it would wear me out and I would need to take a nap or at least sit down and rest. On a normal workday, I would work seven or eight hours go home and not be able to do anything in the evening unless I took a nap after work. If it were a particularly hard day at work I wouldn't really have the energy to do anything whether or not I rested after I got home. This gradually improved as the months went by but there was no breakthrough, there was no point when I felt that my energy level had returned to normal. It was just a holding pattern with very gradual improvement.

This continued until about mid-March of this year. At that point, almost 9 months to the day when I had finished treatment, it felt as though a switch was thrown and suddenly I had my energy back. I could move faster, I had a bit more strength, but more importantly I was not exhausted by doing basic physical activities. I'm not sure why this occurred when it did. Other people who have been through treatment have told me that you have to completely ignore the time frames that the medical professionals give you for recovering from treatment. Most of the literature indicates one to 3 months, some say 3 to 6 months. People who have gone through treatment that I have talked to state almost unanimously that you will not get back to normal until the same number of months have passed from the end of treatment that you spent in treatment itself. I was in treatment for 18 months and the amount of time passing before I began to feel a genuine return of energy or and w approximation of the way I felt before treatment began was nine months, so perhaps there is a correlation where one month of recovery for every two months of treatment will eventually return you to at least a semblance of your previous state. Whatever the case, I don't have a specific reason related to the treatment that would indicate to me why suddenly I began to feel better.

I still have a long way to go. I feel tired after levels of exertion that would not have tired me nearly as much before the treatment began. I also still feel some cognitive and memory deficits that I truly hope will go away as more time passes from the end of treatment. I still hold out the faint hope that my thyroid gland may eventually recover some of its function. At this point, being able to do what I can now is a wonderful thing.

I suspect the change may have had something to do with the time of year if nothing else. I began to feel better around the beginning of spring and two things happen around that time. Daylight savings time starts, and the weather begins to dry out and get warmer. The combination of the sun not setting a 5:30 p.m. and better weather no doubt did a great deal to energize my body and my mind. I don't think it's a complete explanation, but it must have had an effect. Another thing that happens at that time of year is that spring training for the baseball season is coming to a climax and the start of the  regular season is just a few weeks away. I have loved baseball since I was a boy and I'm sure that the excitement of the upcoming season must have given me some energy as well. My fantasy baseball draft was only a few weeks away and that always sharpens the concentration and brings on the energy.

So who knows. perhaps it was not some set period of months after the end of treatment that triggered the renewal of my energy but instead was simply a combination of longer days warmer days and the start of baseball season. Whatever reason or combination of reasons it was I'll take it. I was so tired of being tired, so tired of being somewhat depressed and so tired of having my muscles feel sore and weak that whatever the reason it's good enough for me.

Wednesday, February 29, 2012

Long-Term Side Effects - The Thyroid Gland

The interferon and ribavirin chemotherapy has been over for eight months. That seems to be an appropriate amount of time to examine the long-term side effects of the therapy. In an early post, (which you can get byclicking here), I listed all the side effects of both the polymerase inhibitor test drug RG7128 and the standard interferon and ribavirin chemotherapy. It is a long list. While some of the side effects are relatively mild, a significant number of them are potentially very serious.  The one on which I'd like to concentrate today is the effect of the therapy on the thyroid gland.

In the initial literature handed out at the beginning of the experimental trial, it was noted that the functioning of the thyroid might be affected and in some cases the effects might be permanent. The wording of the literature led one to believe that while thyroid function might be affected during the trial, there was a good chance that the thyroid would return to normal after the interferon and ribavirin was stopped. At about the 6-week mark of the trial my thyroid function numbers began to deviate from normal. The level of TSH in my blood (which stimulates the thyroid when it’s activity is low) began to rise. During the next few weeks it tested at 10 iu/ml and then at 25 and 30 and then finally at 55. This level indicates that thyroid gland is not functioning remotely normally. At this point I was put on levothyroxine and within about 3 weeks my thyroid level was back to normal. I stayed on the levothyroxine for the rest of the time I was in the experimental trial and continued it through the transition to the standard of care interferon and ribavirin chemotherapy. I was on that program for an additional 13 months and I stayed on the thyroid medication the entire time.

When the standard chemotherapy ended I talked to the gastroenterologist at Kaiser who runs their Hep C program about procedure that I should use to wean myself off the thyroid medication to return to normal thyroid function without medication. In reply to this question, he replied that in his experience the standard of care interferon and ribavirin combination usually burned out the thyroid gland and I would most likely be on thyroid medication for the rest of my life. Knock me over with a feather. This was not what I had assumed to be the case nor was it the case that was presented in the initial discussion of side effects at the beginning of the experimental trial. I have no idea what my reaction would have been if the potential thyroid effects had been described in that manner. I may have decided to go through with the trial anyway and may not have, but I do wish that the information had been stated in a very clear and concise manner. It leaves one with the feeling that the research doctors know damn well that the thyroid side effects are likely permanent, but that it is not to their advantage to say that. If you tell someone that there is an interferon-based regime that, with the addition of an experimental drug, will have a 75% chance of curing hepatitis C but will result in the permanent sacrifice of the thyroid gland, how would they find enough subjects for their drug trials. Would anyone short of those whose life was truly in danger because of the effects on the liver of hepatitis C be willing to go through an interferon-based therapy?

If the choice had been put to me that way, I certainly don’t know what I would have done.  I knew then that my liver was not in bad shape. My liver functions were abnormal and my viral load was very high but my liver itself was not badly swollen and did not exhibit heavy scarring. I might have just said let's wait till newer therapies become available, though at the time it was not known that any drugs would be coming through the pipeline soon that did not involve using interferon and ribavirin as well. I don't know what I would have done but I wish I had better information when I made the choice.

Not wanting to believe that I was one of the people whose thyroid was burned out, I decided to wean myself off the levothyroxine and see what happened. I started out by taking my normal dose (100 mg) for the first two months after the end of the therapy. At that time I reduced my dose to one half (50mg) for the next month and then reduced it further to 50mg every other day for another 6 weeks. I stopped taking the levothyroxine for the final 3 weeks before my six-month viral load test. I asked my doctor to test my thyroid enzyme levels at that test because I had been attempting to wean myself off the levothyroxine. He agreed and when the test came back my TSH hormone level was at 53 indicating that indeed my thyroid was not operating and may never operate again. So I am back on levothyroxine and probably will be for the rest of my life. It's an uncomfortable feeling to know that your health will always be dependent on your ability to secure a supply of a particular drug that provides an essential ingredient for your survival but it's certainly not unique to me. People with diabetes have had to deal with this for a very long time, as have people with AIDS and folks with other diseases that I am no doubt forgetting about. It's just one of those things.

But it's something to consider if you are in a position of entering any therapy or drug protocol in a drug trial that uses interferon. Whatever benefits you are going to be getting from the use of interferon will most likely come at the cost of your thyroid gland. Weigh it carefully. It may be the lesser of two evils and you may decide to go-ahead with the therapy but always remember the costs that will be exacted.

Wednesday, February 8, 2012

Six Months Later…Viral Breakthrough

I recently had six month after treatment blood test to determine if I achieved a sustained viral response or SVR. The results came back today and the Hep C virus is back. My viral load is currently at 1 million IU/ml. This completely sucks. 18 months of interferon and ribavirin including 5 months of an experimental polymerase inhibitor RG7168 aka RO5024048 that produced the side effects of weight loss, depression, inability to concentrate, lack of energy, memory going to hell, anemia, and I'm sure others, that the memory problems prevent me from remembering; all of this to achieve nothing. It is getting hit by the million pound shit-hammer all over again.

 I knew at the beginning that the traditional therapy only resulted in a 45% chance of clearing the virus. So when I had the chance to get into the trial of the RG 7128 aka RO5024048 polymerase inhibitor which, in early-stage experiments had demonstrated a rate of clearing the virus of up to 75%, I jumped at it. I'd hoped that the experimental drug would clear the virus. Even after the viral breakthrough that resulted in my expulsion from the test group I still thought that transitioning to standard therapy after the initial success of the experimental drug might give me a small leg up on clearing the virus.

Perhaps the fact that it took 12 weeks for the traditional interferon/ribavirin therapy to bring my viral load down from only 40,000 IU/ml to clear should have tipped me off. Maybe it should have shown me  that the strain of virus that I have would be resistant to my own immune system and traditional therapy and I would perhaps be more likely not to clear the virus then to succeed, but no one wants to face that possibility. When you have already been in a process for six months and you've already faced the side effects and found that, to a point, you can handle them; and you believe you have a chance of clearing the virus; and you don’t know what your health insurance is going to be like in another year or two or whenever a new therapy might come online; and the fact that you have insurance now; and you’re stubborn and you're optimistic; it all puts you in a mind to say I'm going to see if sticking this out will succeed in bringing me to a sustained viral response and a cure.

Well it didn't. So in a sense I look at the last two years of my life, the 18 months on the therapy and the six months beginning to recover from it until the day of the test, as being wasted. I did not get much accomplished during those two years. While I was able to do very good things at work (including expanding the scope of my operation, systematizing and streamlining all of the processes, integrating a part-time person and training them in handling the basics of the operation, and increasing sales and average of 25% per year), that is cold comfort. Just doing that, just functioning on a day-to-day basis and going to my job eventually took so much energy that it left little time and little energy for any part of a personal life. My work and efforts as a sculptor were minimal, my ability to do things with my friends and family were cut way down by the fact that it was exhausting to do anything for very much time at all. It all infuriates me even though I knew that it was only a 50% chance at success. I don't think anyone ever enters a situation like this thinking that they're going to fail and I certainly didn't. The fact that the therapy did not work leaves me feeling somehow cheated. It's not rational, but there it is. You feel that if you spent that much time, that much energy (or lack of it) invested that much hope and effort, something better should have happened. It didn't and I feel somehow empty.

All that being said, on the good side all my liver functions are normal. My doctors tell me that the results that they're getting from the liver tests would indicate that the time that I spent clear of the virus during the therapy, (which totaled about 12 to 14 months out of the 18), allowed my liver to begin to heal itself. The swelling is reduced. It is functioning well and I have bought additional time with a healthy liver. I also learned that I can handle the therapy. I learned that the side effects I got with the standard interferon ribavirin  chemotherapy and with the RG7128 are ones that I can manage. I know that a lot of people have a much more difficult time than I ever did during the traditional therapy. There are people who are so exhausted they can barely move; people whose anemia is frighteningly intense; people who have much more severe depression; people who lose even more weight than I did; people who have even less energy and people whose cognitive facilities and memory decline even further than mine. I realize that the ones who have it far worse than I did must feel even more empty or betrayed or depressed when they find out that it didn't work. Because as difficult as it was for me, if I had gone through even 12 months of the sort of difficulties that others with this disease undergoing the same therapy went through, I don't know if I could ever face doing it again.

 I'm sure at some point I will do it again. I don't like the idea of managing this disease. I don't like the idea of having something in my body that is gradually destroying my liver, breaking down my cognitive functions and creating in the long run a less energetic less mentally sharp individual. I don’t like the possibility of developing serious liver problems that might include liver cancer, cirrhosis and result in the need for a transplant. Though  my doctors told me that given my liver results I am the sort of person who is more likely to die with hepatitis C than from hepatitis C, I don't want to have it at all. The idea that a lifeless particle of protein wrapped around some DNA is working its way through my body destroying my liver doesn't fit my disposition. So I will try again at some point.

 I don't know that I will ever try interferon therapy again. It is extremely devastating and I don't know if I can face it even though I do suffer it better than many other people. There is a tremendous amount of research going on and a lot of that is oriented towards non-interferon drug combinations to attack the virus. There's a lot to look forward to and I know that I'm in good shape to see where it leads.

It's still depressing, it still sucks but you buck up and handle it the best you can. Even though I've been whining for most of this post, I know that my life is a hell of a lot better than a lot of other people in the world and especially a lot of other people with Hep C. Besides, Spring Training is right around the corner and how can you stay depressed when pitchers and catchers report in only six weeks,

Wednesday, September 14, 2011

Sierra Vacation One Year Later

At right about the halfway point in treatment last year, I took a short vacation to Camp Mather near Yosemite. It was a real challenge, particularly regarding side effects and was described in this post. Having actually enjoyed it despite the difficulties, my wife and I decided to do it again this year. It was a vastly different experience.

 Right off the bat, we didn’t need to take refrigerated drugs and the daily dose of pills was down to two (a thyroid pill and Celexa). Remembering last year’s difficulty breathing at altitude, I injected my last dose of Procrit a few days before we left. We then threw enough gear for a two month safari into the back of the pickup (it was a five day vacation – in a cabin) and headed up to Camp Mather.

 The biggest difference was the energy I had this year. Even being off the treatment drugs for only 10 weeks created a noticeable difference. There was a lot less exhaustion – I only needed to take one short nap every day – and I had the energy to do a lot more walking. I even played catch, Frisbee golf and kicked around a soccer ball with my wife during the stay. We even stayed up in the evening and played board games with some of our friends, though I crapped out on the late night wine and ranting sessions that are de rigueur for any vacation. It was wonderful to enjoy physical activities without gasping, nausea and spacing out.

 It’s great to feel some actual progress in recovering from treatment. I even pretend to see my hair growing back (I’m sure those dark hairs weren’t there before, both of them). Of course, after driving back to San Francisco, I went to bed and slept for 12 hours, then took an afternoon nap for two more. I guess I’m not quite yet the physical powerhouse I thought I was.