Harvoni - The Side Effects

It truly is a new day in Hep C treatment. The effects of using Harvoni are a far cry from the often brutal effects of the old Interferon/Ribavirin standard treatment. Fatigue, Insomnia, Brain Fog, Night Sweats, Irritation/Anger, Restless Leg Syndrome, Hair Loss, Depression, Memory Loss, etc. etc. etc. I believe there were some 60+ posts under the tag "Hep C treatment side effects" during the time I was on the old chemotherapy. This time around the side effects are much fewer and more easily managed.

I have noticed a persistent low-grade headache; some abdominal effects notably diarrhea and bouts of truly astonishing amounts of gas production; a bit of nausea occasionally and finally, quite contrary to the advertised fatigue, a bit of a speedy effect, especially if  any caffeinated beverages are consumed. The headache is manageable through over the counter meds, the gas is manageable by removing myself from the company of others and enduring the effects alone and the energy boost can be useful though it is accompanied by enough loss of focus that it is best avoided.

It will be interesting to keep track of how the side effects evolve over time. So far, the nausea has decreased a lot, the headache has slowly been increasing and the speed effects are something I am trying to keep away from. My primary hope in the long term, is that killing off the virus will help with the brain fog and other long term memory and cognitive deficits of Hep C. Until then I can just keep on wearing the wrist band with my name on it...

New Drugs, New Hope; I start treatment with Harvoni

I just started treatment with the new Gilead drug Harvoni. It is the first of the new set of "wonder drugs" for Hep C that do not require either interferon or Ribavirin to be taken along with the primary treatment drug. The drug itself is a combination of Sofosbuvir, a polymerase inhibitor (much like the one I took in the drug trial described in the early posts of this blog) and Ledipasvir, which is an NS5A inhibitor. NS5A is a protein is an essential component for the replication of the Hep C virus. The two compounds act together to inhibit the Hep C virus from replicating itself and thus keep the infection from spreading and allow the immune system to gradually kill off the virus present in the body (my interpretation and if wrong the blame is on me).

The cure rates for genotype 1 Hep C (most common and vicious form) are in the 94%-99% range for treatment naive patients (those who have never undergone any sort of treatment) and in the 90% range for those of us who underwent treatment in the past and failed (thus leaving behind tougher versions of the virus). The side effects are also MUCH less difficult than those of the old standard of care of interferon and Ribavirin. The most common are headache, fatigue, diarrhea, nausea and insomnia. While these sound bad, and they are no fun, most reports have them present at levels significantly lower than the same side effects on the old standard treatment.

All of this sounds pretty good. High cure rates and moderate side effects are a strong combination. This is no doubt why you are seeing numbers of soft-sell, perhaps it's time to do something about your Hepatitis C, sorts of ads on television and in print media. Now that there is a treatment without injections, taking only one pill per day, with moderate side effects and with a treatment length of only 12 weeks (and in some instances 8 weeks) it is time for the drug companies to pile on the advertising. That and the fact that Gilead is charging $84,000 ($1000 per pill) for a 12 week course of treatment. (AbbVie has a 4 pill treatment on the market as well: Viekira Pak). The fact that the price is $1000 per pill for the Harvoni may account for the fact that the pill is in the shape of a diamond.

It's a bit too early to have much to say about the side effects, but taking a pill that cost $1,000 is definitely a new experience for me. I'll have more news about how it feels in the next few days.


  

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!

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.

Night Sweats Redux

After finishing 18 months of treatment involving powerful, side-effect laden drugs one’s expectations are that once you are no longer taking the drugs, you no longer experience the side effects. This does not exactly seem to be the case. Shortly after the first week following the end of treatment, I began to experience night sweats again.

Within a few months of beginning the drug trial in 2010, I started to experience night sweats, as related in this post. The night sweats were intense with heavy sweat soaking through sleeping clothes and even requiring changing the sheets in some cases. These went on for several weeks until my body seemed to adjust to the various drugs and they receded to only an occasional event. This was the norm for about a year until they became a bit more common during the final 8 weeks of treatment. They were still not the heavy sweats that characterized the early part of treatment, but they did happend a few times a month toward the end.

About ten days after finishing treatment, I woke up on my back with a pool of sweat on my concave abdomen (did I mention that I had lost a bit of weight?). After a change of shirt and going back to sleep, I awoke later to the same condition. This happened three times during the night and by morning there were damp shirts hung all over the bedroom. It was unclear why it might be happening. My wife had recently had the flu and I was a bit feverish before retiring for the night so perhaps it was related to that. When it happened each night for the next week, it occurred to me that it might be related to the HEP C treatment. The heavy sweats have stopped, but in a milder form they have remained an event that occurs about 3 times a week.

It is not clear what the cause is. In my darkest moments, I remember that the symptoms for the onset of acute HEP C are flu-like, including fever, sweating and muscle aches. I felt some of them at the start of this round of sweats but it does not seem likely the sweating would have continued on for several weeks after the other symptoms disappeared. In talking to folks who have had relapses after treatment, they report that they relapse within the first month, which would fit the scenario, but they do not report having symptoms. It could also be related to stopping the other drugs being taken to alleviate the side effects of the standard treatment. Ambien was something I was taking every day for the final 2-3 months of treatment as sleep was not something that came easily or often. Ambien is not something that should be taken daily and even Dr. Sue had been more worried about the addictive nature of that than of any of the other drugs I was taking. There are some withdrawal symptoms that are noted for Ambien, but they do not indicate that they would go on for weeks after stopping. It could be that the long term use of interferon and Ribavirin has reset my internal thermostat. It always ran cold before as witnessed by the pile of covers on my side of the bed every night. Perhaps now it is more like my wife’s internal temperature gauge. She often sleeps covered only by a sheet on nights when I am swathed in blankets.

I hope it is something as benign as my body permanently running warmer than it used to. If nothing else, surviving summers in San Francisco will be easier if running hot, than if constantly cold. Until more evidence is gathered, the jury is out. In the meantime I am busy brainwashing myself that it is NOT because of any recurrence of HEP C.

Complexity, Thy Name Is Drug Interactions

I do not envy medical researchers their jobs. While puzzling out the secrets of biochemical reactions and how they can be used to counteract the malign effects of viruses, bacteria, cancerous cells and the effects of defective genes must be fascinating and rewarding work, sorting out the effects and side effects seems dauntingly complex.

To use my case as an example, initially I was taking 3 drugs to attack the Hepatitis C virus. The interferon (Pegasys) and Ribavirin (Copegus) were well known drugs; indeed they are the Standard of Care or SOC, with well-documented effects and side effects. Those effects, however, all vary with the individual receiving treatment. For some, they have little effect on the Hep C virus, for others they are tremendously effective. Some individuals are devastated by the side effects, even to the point of being unable to complete the treatment, others individuals have a relatively straightforward time of it with a few difficult side effects but none that are debilitating. To this well-known set of circumstances they added a new drug, the polymerase inhibitor RO5024048 aka RG7128. Phase 1 testing had already been done using the new drug alone and its side effects noted, but aside from a worrying potential effect on the kidneys, many of the side effects mimicked those of the SOC. So as the study progresses and the effects and side effects are tracked and cataloged, it becomes vastly more complex to attempt to determine which drug might be doing what; what synergistic effects might be occurring between drugs; and what other effects might be the just the degree of effect of each drug on the specific individual undergoing treatment.

As the treatment progresses the Ribavirin wipes out your hemoglobin and gives you anemia and potentially itchy rashes. The interferon wipes out your white blood cells, saps your energy, fogs your brain, tends to give you depression and robs you of the ability to sleep well if at all. So to counteract these effects, additional drugs are prescribed. To continue the example of my case, I am currently taking 4 additional drugs. Firstly, I was given Tramadol (Ultram) to counteract the fact that as part of my interferon cycle, the muscles along the sides of my body can be achy and painful enough to leave me unable to lie down. As you might imagine this makes it difficult to sleep. Next, as the general insomnia caused by the interferon kicked in, I was given Trazadone to use as a sedative. Then, as the interferon gradually eroded my natural good cheer (okay my occasional good cheer) they prescribed an antidepressant, Paxil. In order to bridge the time it took for the Paxil to reach full effect, they added Ativan to the witches’ brew of drugs. The side effects of the Paxil necessitated a switch to another antidepressant, Celexa, but the total result is still the same. I am taking 4 additional drugs to counteract the effects of the drugs I am taking for the Hep C.

A final complication during the trial is changing dosing of drugs. In this trial, we only took the experimental polymerase inhibitor for either 8 or 12 weeks and potentially (depending on which arm of the trial you were in) at three different strengths. So after the first 12 weeks of the trial we were all down to 2 anti-Hep C drugs. There is also dose-adjusting going on for those two drugs as well. I have administered full, half and ¾ doses of interferon and even been told to skip a dose at various times during the study depending on my various white blood cell counts. I have been reduced to a lower level of Ribavirin to attempt to counteract my anemia. These sorts of adjustments are the norm for various patients throughout the course of the study.

To all this you can add the complicating effects of human foolishness, forgetfulness and folly (I should have written sports headlines). Again, we have the convenient example of my own case as an illustration. The context for this particular case of foolish forgetfulness comes from two previous posts. In one, I detailed all the benefits of The Everything Tastes Like Crap Diet, in the other I mentioned that chocolate had some very powerful effects on me after I started treatment. Well, the third day after I started the Paxil, while still in the speed rush phase of the acclimation period, I began to actually fell hungry again. I don’t know if it was the psychological effects of the Paxil or just because my body was using so many calories it was crying for food, but I went to the store with a real desire to buy food. I also noticed that foods I had not though appealing in weeks or months began to seem like they would be really good. The though of eating ice cream occurred to me for the first time in months, particularly chocolate ice cream. So I bought a pint of chocolate ice cream and went home and ate it in one sitting. The next day I did it again, and the next. All this time I was noticing that I was jittery and had a great deal of nervous energy. The jitteriness was moderating as the days went by (as I acclimated to the Paxil I thought), but did it occur to me that the effects of the massive doses of chocolate might be contributing to this? Heck no, never crossed my mind. By the way, despite the massive influx of delicious fat into my body, I still continued to lose weight.

Due to side effects that I believe are completely unrelated to any chocolate consumption (chocolate is supposed to increase libido, I believe), they switched me to Celexa. About 4 days in to the Celexa regimen, I once again noticed that I was a bit jittery and nervous. Finally it occurred to me that I had been eating a lot of chocolate. That same day, as I bought my pint of ice cream on the way home from work, I bought vanilla and have ever since. I haven’t noticed a huge difference, though I continue to be less jittery and nervous every day, but there is one more piece of evidence that I just can’t ignore.

I was at work today and I got a bit hungry around 11:00 a.m. I went down to the lunchroom and among the volunteer snax there was a bowl what I thought was trail mix but turned out to be pure M&Ms. I took a small cup of them went back up to my lair and proceeded to nibble on them as I prepped eBay auctions. About 15 minutes later I noticed I was a lot more wired than I had been before. It was not just a sugar rush, it was the jitters, case closed.

So, not only do the researchers have to deal with the seemingly endless complications of drug to disease interactions, drug to drug interactions and drug to human interactions, they also have the wild card of patients who can’t even keep track of their own food reactions. And these reactions are the ones the researchers are never even aware exist. Good luck to all of them, because we patients aren’t always reliable reporters.

I blame it all on the brain fog…

Round and Round the Drug Carousel.

It’s been a few more days and the antidepresseant cycle has modified into a steady spaced out condition. It has the sort of charectaristics I mentioned in the past post be without much nervous energy, or any energy at all for that matter. It’s sort of a passive, pleasant, unconcerned state of mind. I have no real idea if that is the intent of using antidressants in the context of a chemotherapy regimen, but that is where we are.

My weight has stabilized, but the sexual dysfunction persists. I don’t really have the interest to even attempt it anymore. That fact that it doesn’t bother me creeps me out.

I went in today for yet another redraw to check neutrophil and lymphocyte counts. They were low enough last week that I was told to skip my interferon dose. They hope that the interruption of the interferon dose with allow a bounce back of my white cell counts and allow me to resume the interferon with the next dose.

After the blood work, AVB quizzed me at length again about my reactions to the Paxil, whether the Ativan had helped with the symptoms and how I generally felt about being on the Paxil. I told her about the powerful initial side effects and the time it took for them to call down. I mentioned that I was now in a state of steady unconcern with a side order of being spaced out and out of focus. I also told her that I thought that Doctor NB could do a great favor for future patients by spending some time to go over the more likely side effects and the periods of time that they might expect them to last. AVB asked whether the pharmacist went over the side effects and I informed her that at my inner city pharmacy, their was never much in the way of consultation.

I also went over the sexual side effects. She was quite concerned and put in a call to Doctor NB for a consult. As she said, the treatment is hard enough to deal with without removing your enjoyment of a basic component of living. She also mentioned that sex is one of the ways for couples to feel close to each other and offer support and during treatment, you need that more than ever.

It took about 25 minutes for Doctor B to arrive and the fact that I sat calmly and stared out the window without a care in the world for most of that time speaks to the spaceyness I was feeling.

When she arrived, Doctor B apologized to me for not spending the necessary time on side effects the last time we talked. She stated that they often left that to the pharmacists but that was not really acceptable. It was gracious and heartfelt of her and I appreciated it. After hearing about the sexual issues, she decided to switch me to another antidepressant. This one is also an SSRI, but is a different drug. It has a much smaller incidence of negative impact on sexual functioning. She went over the expected side effects (hooray!) and sent me out the door with a prescription for Celexa. She told me to hold on to the Paxil because you never know.


After Doctor B left, AVG talked about the many and varied forms of antidepressants. She said that someone like myself who is a virgin to those types of drugs is much harder to prescribe. Many people come into treatment with a history of antidrepressant use due to the side effects of Hep C and thus already know that Welbutrin works, but Zoloft, Prozac and Celexa do not for example. It may take even another drug before we settle on the best fit for me.

So once again, I am armed and dangerous with celexa in my holster and heading for a showdown with my other drugs, or something.

Welcome to: The Everything Tastes Like Crap Diet

Most everyone has had a time in their life when they wanted to lose a bit of weight. Anyone who has ever decided to lose some weight faces the sad fact that losing weight is both a simple process and a very difficult one. There are three ways to lose weight. Eat less and be more physically active is the best and most successful way. Then there is the option of eating the same amount of food but increasing the physical activity. This method is slower, but still successful. The third way to lose weight is to eat less and have about the same level of physical activity. This is the slowest, but still you eventually lose weight.

If none of these simple yet difficult methods appeal to you, there are many dieting options available. The Grapefruit Diet, The Water Diet, The No Carbs Diet, The Take Two of These Pills and Don’t Eat After Eight P.M. Diet, and the many programs that offer you the opportunity to pay them for both food that they prepare and for support during the process of only eating their food. Maybe these diets work and maybe they don’t. I, on the other hand, can offer you a guaranteed method to lose weight over a 6-12 month time period. The interferon and ribavirin diet. You could call it the Hep C Diet, the I & R Diet or even the Treatment Diet but the most accurate title is indeed “The Everything Tastes Like Crap Diet.”

The problem with the 3 most effective ways to lose weight and, for that matter, the popular diets as well, is that you still miss food. You still want to eat. You sit around between meals distracting yourself from the fact that you are hungry and still want more food. Well, the TETLCD solves that problem. After you have been on the plan long enough (which is generally only 6-8 weeks) the last thing you want to do is eat.

How does the TETLCD achieve this miraculous transformation, you ask. Well, there are actually two separate methods the diet uses. The first is that the TETLCD removes all taste from 80% of the foods you used to love. Ice Cream – tastes like cold, sweet Styrofoam; Mexican Food – the beans and tortillas taste like cardboard with the flavor removed; Sandwiches – the taste and texture of the bread actually causes you throat to close; Salad – the lovely tomatoes and avocados and lettuce look enticing but then the smell of the French dressing makes you nauseous. Speaking of nausea, that is the 2nd secret weapon of the diet. You can feel nauseous for hours at a time and boy is there anything less appealing than food when you are desperately trying to keep your gorge from rising, I think not. This two-pronged approach is the secret of the success of the TETLCD. Just ask anyone you know who has been on it.

While I could cite numerous testimonials as to the effectiveness of the diet, most of the folks who have had the opportunity to experience TETLCD are trying so hard to blot the experience from their minds that they, mostly politely, refused to discuss the diet. That leaves it up to me to offer my testimonial. I am only 19 weeks into the full 48-week TETLCD program and I have already lost 16 pounds. Just think, by the end of the program, I could be a shadow of my former self - literally.

So, while I don’t recommend contracting Hep C just to get on the program, for those of you in the midst of it or considering it, the steel-gray lining to undergoing treatment is that you will lose that extra weight. You might also lose weight you can’t afford to lose, but most dieters have no sympathy for those folks anyway.

Happy Dieting!

Week 18 – On A More Personal Note…

Yesterday I passed on the news about the expansion of the RO5024048 combination drug trial. Today I’ll pass on the personal news about my condition.

They did all the usual blood draws (only 14 vials this time), and various vitals but no EKG. I didn’t notice that they were not doing it and therefore never asked why it did not happen. When they checked my weight, it turned out I have lost 12 pounds in the last 8 weeks. I had noticed my belt being a bit loose, but I didn’t think I had lost that much weight. I don’t have the energy to exercise heavily so I guess I am eating less than I think.

I’m still undetectable as of week 14 (which was 4 weeks ago) which is the best news of the day. 8 official weeks of no detectable virus levels is encouraging and definitely helps during the various bouts of side effects. About 3 weeks ago they dropped my Copegus dose to 1000mg from 1200mg per day. My Hemoglobin has popped up very slightly but I am still down 35% over normal. The only new development with the shortness of breath associated with the anemia is that now I occasional get out of breath while talking. Thankfully it only tends to happen when I have to project a bit to be heard in a noisy room or in a large group, the usual day-to-day nattering is unaffected (to the occasional chagrin of those subjected to it). White blood cells are low but just above the cutoff line.

About 3 weeks ago, my neutrophil count increased enough that they restored me to a full dose (180mg) of Pegasys from the 3/4 dose (135 mg) that I had been on for about 6 weeks. This brought back a whole raft of side effects that had moderated during the lower dose of interferon. Headaches, rash with itching (thankfully mild), nausea and more intense insomnia all were once again daily, or at least several times weekly, features of life. I had actually thought that my body had begun to acclimate to the treatment drugs, but with the return of all of these side effects, I believe the lower occurrence was due to the lower dose.

I have been having bouts of insomnia for several weeks and given that they have increased with the increase in my interferon dose, the consulting doctor to the study decided to proscribe trazodone to help me sleep. I have taken it twice and while on the first night it did not seem to help at all, the second night found it working better and I think I got a decent night’s sleep. I will report back on the results in the future.

As for reports, taking acetaminophen instead of ibuprofen, just before my Pegasys (interferon) injection has had no effect on my fatigue in the 24-36 hours after the injection. I feel just as crappy taking Tylenol as I do taking Motrin, so much for the miracles of modern pharmacology.

Time to head out the door to the support group. Best of all, I can listen to the Giants game on the way there and maybe on the way back…if I don’t forget they’re playing before I get to the car.

Avoid Being a Ralph Star on the Job

Rules for managing nausea at work:

1. Recognize when those waves of nausea you occasionally feel become more insistent.
2. Make sure the rest room is available and not in use.
3. Move quickly to the rest room when needed.
4. Make sure the rest room has a solid, thick door and is not one of those hollow pocket doors or, even worse, a jalousie style door.
5. Attempt to void your digestive tract in as quiet a manner as possible.
6. Clean all affected areas thoroughly.
7. Attempt to return to your work area discreetly.


I think I managed to follow rules 2, 3 and 6 pretty well; the others not so much. It was last Friday afternoon and I suspect that it all happened the way it did because it had not happened before. I have been remarkably free of the truly vicious nausea that afflicts many people on Hep C treatment. I get waves of it from time to time, but usually by drinking some water, getting up and walking around and doing some controlled breathing, I have been able to manage it. On Friday, things were different.

In mid-afternoon I began to have some waves of nausea. I used my usual tactics to try to manage them, but they didn’t really go away. I felt them get stronger and realized that this might require a trip to the toilet. Then I began to cough (as you sometimes do during these delightful events) and realized it was game on. I ran to the bathroom. As an aside, I work on a mezzanine with a small bathroom close by. Unfortunately because of the design, the bathroom has a hollow pocket door that slides closed. As I ran into the room, I slid the door closed (or as it turned out, almost closed). I then began to noisily lose my stomach contents. It was over quickly enough and after pulling myself together and cleaning up a bit, I walked out of the bathroom. To see my boss standing there with a concerned look on his face as he asked me if I were going to live.

It turns out that because of the flimsy nature of the door and the fact that it did not close completely as I rushed in, it was quite clear throughout the building that someone was having digestive problems. Luckily it was late enough in the afternoon that there were only my boss, one coworker and one volunteer left in the building. If it had all happened about a half-hour earlier, I might have had a crowd of concerned volunteers waiting for me outside the bathroom wondering if my internal organs were still internal.

It’s not exactly that it is embarrassing to have this happen, it’s more that I like to be somewhat discreet and not subject everyone in the building to my health issues. I don’t hide the fact that I have Hep C, but I don’t advertise either the fact that I have it or the fact that I am undergoing treatment. It is just something that doesn’t need to be rubbed in everyone’s face. No doubt an artifact of my Minnesota upbringing.

But it did lead me to formulate the 7 simple rules for avoiding becoming a center of attention at work. So take it for what it’s worth. To be a star or not to be a star, aye, there’s the rub.

Suddenly Being Sleepy

A new version of an old side effect surfaced during my recent stay in Los Angeles. Fatigue is one of the more common side effects of Hep C Treatment and I have been experiencing it in mild and severe forms since beginning the treatment study. It has generally built up during the day and peaked in the afternoon at which time I have to lay down and take a nap or I have a hard time functioning mentally or physically. What I noticed over the weekend was that the fatigue started to come on very suddenly. One moment I was functioning more or less normally with my usual moderate level of energy and attention. Over just a few minutes I would be yawning uncontrollably and have a strong need to sit down or lie down. I just didn’t have the energy to sit up and pay attention much less walk around and function normally. This could happen in the early afternoon, mid afternoon or late afternoon and did not seem to directly relate to the intensity of the activity that had been occurring.

This is not something that has been occurring up to now and presents a new challenge for managing the treatment and the side effects. It is going to be a bit more difficult to plan activities if I do not know when I am going to become tired or how suddenly the fatigue will be coming on. This is not a welcome development, to say the least, and I am not sure what it is related to.

I recently resumed injecting a full dose of interferon. Since that time, I have noticed the return of two symptoms that occurred earlier in the study but had since disappeared. I have a mild rash on various parts of my body, mostly the arms and legs, which itches. The itching is not severe and I can usually ignore it. I also have headaches that I tend to feel mostly behind the eyes. I had both of these symptoms in the first several weeks of the study and I had thought that their gradual disappearance was my body acclimating to the interferon and ribavirin. About 6 weeks into the study my neutrophil count and lymphocyte count had dropped to the point that my dose of interferon was reduced to 135 mcg. from 185 mcg. It occurs to me now, that the disappearance of those symptoms corresponded to the reduction in dosage and perhaps that was the reason for the disappearance as opposed to becoming acclimated to the drugs. If so, now that I am back on a full dose I my have a more complete menu of side effects to look forward to for the duration of the treatment.

It also makes me wonder if the new, more sudden, onset of fatigue is related to the increased interferon dose. Since fatigue is a known side effect of the drug, and the longer you take interferon, the more you feel the side effects, perhaps this is also caused by the return to a full dose of interferon.

I am also going to start taking more acetaminophen (Tylenol) with the interferon. I had been told by a lot of people that taking acetaminophen before injecting helped relieve the pain associated with the injection site and generally in the limb that you injected. I usually take ibuprophen instead as I have never experienced much of a pain relief effect from acetaminophen. In doing further reading, it has been reported that taking acetaminophen at the time of the injection can help relieve the fatigue associated with interferon, especially the fatigue that occurs 24-36 hours after the injection. I will definitely try it with my injection this Thursday and report my results. I hope it works; I am definitely tired of being sleepy, especially on short notice.

Hepatitis C and Fantasy Baseball: The Auction

I spent the last 5 days in (mostly) sunny Los Angeles. I was there for my fantasy baseball auction. This is an event in which grown men (mostly) pretend they are baseball general managers and buy a team of actual major league players. This becomes “your” team and you use the actual statistics they accumulate during the year to determine who wins your league.

I have been doing this for 25 years and have gathered a certain level of experience at it as well as a number of beliefs about how best to proceed at the actual process of buying players and assembling a team. A great deal of this accumulated wisdom (a tricky term to apply to this sort of experience, but there it is) had to be thrown out for this auction as the facts of Hepatitis C treatment intruded on the natural rhythms of the fantasy world.

The auction started at 9:00 a.m. on Saturday. I generally inject Interferon on Thursday night. I have determined that the side effects of the Interferon, both mental and physical generally start to hit about 14 to18 hours after the injection. They peak in the 36 to 48 hour period and then gradually lessen until the next injection. I delayed my injection until Friday night around 10:00 p.m. This would mean that the side effects would most likely start to hit from noon till 4:00 p.m. Saturday, I would have a solid 3 hours and possibly as many as 6 before I lost my edge, such as it is. I also realized I had to create a strategy that allowed me to buy most of my players before I started to feel physically sick and mentally spaced out.

One of the tenets of auction theory is that people involved in the auction tend to get caught up in the emotional intensity of the moment and pay too much early in the process. As the auction proceeds and people run out of money, bargains can be had if you are patient enough and a canny judge of talent. This requires concentration and attention over a several hour process. Hah! I say. The side effects timing I mentioned above make that kind of long term concentration impossible, at least for this particular patient. The strategy I devised was to choose actual players that I wanted on my team and buy them in the auction no matter what the price. I made educated guesses as to how much all the available players would be expected to cost. Within those general guidelines, I chose players that would fit my budget and help my team. I went to the auction intending to buy mostly those players and thus I would not have to concentrate on every player just the ones I intended to buy.

It worked far better than I expected. I needed to buy 15 players to fill out my team. I managed to buy 12 of the players I had picked before the auction. I only had to fill 3 positions from the general group of players. The down side to this success is that I have no one to blame but myself if my team is awful.

I was a good thing it worked because, like clockwork, the nausea hit at about 1:30 and I really noticed my concentration lagging from about 2:00 p.m. on. By the time 3:00 p.m. rolled around and the auction was over, I was spent.

This is all really just an example for any specific event or activity that you do while you are undergoing treatment. Successfully completing activities, classes, or special events and occasions is all about planning. Determine what your own body and mind are capable of for given days and time frames and plan your involvement with activities around those capabilities. If it means that you change the way you normally or traditionally do things, make those changes. It will mean all the difference in your enjoyment of the activity or event and your success in completing it. You are the only one who knows what your capabilities are and you are the one who needs to both plan for those capabilities and let others know what they are. This way, no one is surprised and/or disappointed by the level of involvement you can bring to an event.

By the way, the 2010 Black Shadows team is:

John Baker C Florida
Miguel Olivo C Colorado
Adam LaRoche 1B Arizona
Brandon Phillips 2B Cincinnati
Ryan Theriot SS Chicago
Freddy Sanchez 2B San Francisco
Mark DeRosa 3B San Francisco
Jeff Baker 3B Chicago
Jay Bruce OF Cincinnati
Shane Victorino OF Philadelphia
Conor Jackson OF Arizona
Marlon Byrd OF Chicago
Garret Jones OF Pittsburgh
Scott Hairston OF San Diego

Wandy Rodriguez SP Houston
Barry Zito SP San Francisco
Aaron Harang SP Cincinnati
Brett Myers SP Houston
Tedd Lilly SP Chicago
Paul Maholm SP Pittsburgh
Chris Volstad SP Florida
David Bush SP Milwaukee
Jeremy Affeldt RP San Francisco
Sean Gallagher RP San Diego
Sam Gervacio RP Houston

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…

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…

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.

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.

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.

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.

Deciding About Treatment – Lot’s to Think About

I have had several people ask me why I decided to enter treatment. Specifically, they wanted to know why now?
My situation was this: 56 years old, high viral load at 13,000,000 per ml of blood, stage 1 liver disease, my Hep C had been symptomatic for 18-24 months.
Mine was not a desperate situation, no advanced liver disease, symptoms were present and annoying but not yet debilitating, and I was not in poor health generally. It came down to a long and serious consideration of a number of variables from health to work to family considerations. Here are some of the considerations:

What is the stage of your liver disease? Clearly, if you have advanced liver disease, treatment becomes something much more important and possibly mandatory than if your liver is not so deteriorated. If it early stage, you have the gift of time to consider all your options and potentially await additional treatment developments. If it is late stage, you have to decide much more quickly as the consequences of putting off treatment become exponentially more serious.

What is the state of your general health? Is the Hep C directly attacking your health through its symptoms and side effects and/or is the state of your liver creating additional health issues that are threatening or debilitating? To a certain extent the poorer your health, the more difficult the side effects of the treatment may be, but the more important it may well be to begin treatment in order to battle the effects of the disease. Again, the better your general health, the less immediate the decision becomes.

How are the general Hep C symptoms affecting you? Are you able to use available therapies to mitigate the effects of the symptoms of Hep C? Fatigue, Depression and Brain Fog are 3 of the more widely reported symptoms of Hep C. There are also joint pain, Ascites or fluid build-up in the abdomen, weight loss and the really serious symptoms of late-stage liver disease. There are a number of therapies for the general symptoms and if you are using them successfully and your life seems to be stable and at an acceptable level of health, this affects your decision. If the symptoms are beginning to overwhelm you, or become more than is tolerable for you, this also will have a large influence on your choice.

What is your health insurance situation? Hugely important of course. In countries with government financed health care systems this is a bit less of a concern, though the time before you can get authorization and enter treatment has to be considered carefully. If you have private health insurance, does it cover Hep C at all and if so, which of the therapies does it cover and for how long? If you eventually have to change insurers, will your Hep C be considered a per-existing condition and therefore the treatment would not be covered by insurance? Does this mean you should go for it while it is still covered? These are really tough questions and can definitely make the difference in treatment decisions. Something as basic as timing your treatment to begin the year right after your insurance renews can make all the difference in being covered through the entire length of treatment.

What is your employment or general work situation? This is a multifaceted question. If you are self-employed or run your own business, can you keep it going while not being able to put in the 40-60 hours per week that self-employment and business ownership generally require. Do you have people who can pick up the slack and help you during the 48 or more weeks that you will be, most likely, not at your best? Can your company survive if you have to take some time off without being able to work much at all?

If you are employed, what is your employer’s attitude going to be? Can you let anyone know you have Hep C? Is it clear to you that the attitudes at work would not be in your favor if they knew you had the disease? While it is illegal to discriminate against someone with a chronic disease like Hep C, remember that the burden of proof is on you. Should it come down to contesting a lay-off or firing, you have to bring the case and prove the action was because of Hep C.

If you believe that there is support from your employer what form will it take? Can you work a shortened workday or 4 day week? Can you take time off during the day to rest if necessary? Will they be supportive of the time you need to visit doctors and have tests? Do you have a sick leave policy or accumulated sick time that can be used to make up the time that you cannot be at the job? All these questions are vitally important and must be considered carefully before you make choices about treatment.


Which Genotype of the Virus am I and what are the chances for success? The common genotypes in North America are genotypes 1, 2 and 3. Genotype 1 is the most common and conversely, the most difficult to treat successfully. Genotypes 2 &3 are much less common in North America (and much more common in the rest of the world) and have a much higher success rate with treatment. The Standard of Care (SOC) is pegylated interferon (Pegasys, Peg-Intron) and Ribavirin (Copagus) taken for 48 weeks. The percentage of patients with a Sustained Virologic Response (SVR) is about 46% for genotype 1 and 80+% for genotypes 2 &3. So you have a bit less than a 50-50 shot to be cleared of the virus after treatment if you have the most common genotype present in the USA. The question boils down to: do you want to endure the effects of treatment for a year (and then some recovery time as well) for a 50-50 shot at a cure?

This is where the question of experimental drug studies comes into consideration. The study I am in uses a polymerase inhibitor (RO5024048) in addition to the SOC. The early studies indicated that it could result in a SVR rate of upwards of 70% in genotype 1 patients. There are very advanced compounds in the protease inhibitor family (Telaprevir is one example) that have shown in phase 3 studies that they have SVR rates of about 64%. When you see these sorts of results, the question changes quite a bit. Can I deal with treatment for a year if it means I have a 2-1 shot at clearing the virus or even a 3-1 shot?

What is your family situation? How stable is your relationship? How do you think your partner and/or children will react to the situation? Will they support you through the difficult parts of treatment? Does your family have the necessary financial means to deal with the potential loss of income and increased costs brought on by undergoing treatment? These are all highly personal questions whose answers are different for every individual considering treatment. They can also be questions whose answers change over time. Sometimes folks can start out very supportive and be worn down over time. Other times people step up to offer support and assistance in ways that can be astonishing in their generosity.

These are just some of the questions that arise when considering treatment. More to come…

How I told my Wife I had Hepatitis C

I learned that I had Hep C on Friday, October 31st, 2008, Halloween. I told my wife about the diagnosis 3 days later on Sunday, November 2nd, the Day of the Dead. That was not intended by me to be significant, it was just that I felt I had to tell her by the end of the weekend and the days just happened to match.

It took me that long to tell her for two reasons. I had to learn more about the disease and the effect it would be having on our lives and needed the time to do some research. I also couldn’t tell her earlier because Halloween is one of her all time favorite holidays. She loves the costumes, the parties, the marathon showings of cheap horror and terror movies at theaters and on TV. For many years we lived in the Castro district of San Francisco which is legendary for its Halloween celebration and we always went down to be in the middle of the celebration. So it was not as though I could just dump my news on her on the day itself. After all Hep C is not a fast-moving disease and 48 more hours before the bomb got dropped was not going to make any difference.

We went out to Golden Gate Park in the afternoon and stopped off at the art museum, looked at the show (I have no idea what we saw as I don’t remember much about the day other than our conversation), had some lunch and then I told my wife that I needed to talk to her about something important. I know that made her nervous, as we do not generally have specific conversations about “important” events or about the nuts and bolts of our relationship. Those sorts of conversations tend to come up within our day-to-day life and don’t usually need to be specified as something important. So as we walked over to a park bench, both of us were anxious (I know I was anyway) about what was coming.

I actually had two things to tell her. The one I led off with was that I had screwed up the computer by catching a virus and was going to have to take a day to clean and possibly reinstall some stuff and that she shouldn’t plan any projects that would use it for a couple days until I could get that done. She was a little disgusted with that news and ground me a bit for being careless, but then I told her I had something more important to talk about.

I told her that I had gotten a call from doctor K and that he had told me that I had Hepatitis C. He said that he had tested me for Hep C because he noticed in a previous test that my liver enzymes were elevated and had made a note to test for Hep C the next time I had an appointment. I told her that it was a long-term illness and that it didn’t mean that my health was going to be affected in a seriously negative way anytime soon. I also asked her to make an appointment and get herself tested as soon as possible so we knew whether she had it or not. I told her I had a follow up appointment the next week to go over the results with doctor K.

She was stunned. She immediately asked me a bunch of questions about Hep C. How was it passed from one person to the next? What was the timeline of the disease? What were the symptoms and was I suffering from them? How long had I had it? Did I know how I had gotten it? How was it treated?
I told it was a blood-borne disease, that it was not passed in other ways. There was some possibility of transfer by sexual intercourse but it was not clear if that was because of transfer via sexual fluids or because of blood contact during intercourse. I told her that the disease was briefly acute within 6 months of so of contracting it and that if you did not clear the virus then, it settled down into a chronic infection often without symptoms. That, sometime many years later, the disease became symptomatic. The symptoms were liver damage, fatigue, depression and brain fog and that I was definitely feeling some of them. I had no idea how long I had been infected and there didn’t seem to be any way of telling how long and that I did not know how I had gotten it. She knew full well the range of behaviors I had engaged in that might expose me and, as mentioned in other posts, she had done everything I had. She had no intention of busting my balls over how I had gotten the disease. She was far more concerned about what this would mean for my health both in the short term and the long term as well. As for the treatment, I told her what I knew, that it was long, difficult and had a less than 50% chance of success.

She was worried and scared because the only recent contact we had with someone with Hep C was with an old friend who had been diagnosed very late in the cycle of the disease. He had cirrhosis by then, and was not a candidate for transplant. He died within 6 months of the diagnosis. She did not want that to happen to me (needless to say, I didn’t want that either).

She has a background (and 2 degrees) in science and her immediate response was to gather information. After we went home from the park and talked about it some more, realizing as we did that our information was limited to what I had found out on the internet. She immediately hopped in her car, went to the bookstore and got 4 books on Hep C. We spent a cozy and quiet Sunday evening reading about Hep C from the Dummies Guide to Living With Hepatitis C.

I think the fact that I was telling the news to a scientist made a big difference. My wife is used to understanding and learning about, scientific concepts and processes and in way, that is what is happening with my disease. It is something to be learned about, understood and then attacked. The fact that a treatment is available, regardless of the percentage rate of cure, is a huge plus in comparison to so many other diseases that I could have gotten.

We both lived in San Francisco during the 1980s. We both lost a whole swath of friends to AIDS. We still know long-time survivors of the epidemic. While there are many treatments for AIDS available that can fight the virus and extend the life span, there are no cures. Hepatitis C, on the other hand, has treatments in hand that can clear the virus from the blood and many new ones in the pipeline that promise ever higher rates of clearing. She had found this all out by late Sunday night and it helped a great deal to manage the fear and take control of her response to my disease.

Telling my wife I had a disease that had the long term possibility of needing truly serious medical care and possibly being fatal, was one of the hardest things I have ever done.