Seeing More Clearly After Treatment

Vision changes are a big part of the side effects of both standard treatment and several of the additional drugs either approved (boceprevir, telaprevir) or under study for treating Hepatitis C (RO5024048 RG7128). They can include blurry vision, changes in the strength of your vision, sparkles or light shows within or at the edge of your visual field and worst of all macular degeneration. The effects can vary in intensity during the course of treatment. Most of the visual side effects reverse after treatment is ended save for macular degeneration, which is permanent. In my case, the effects seem to be slowly reversing themselves.

In this post (about 6 paragraphs down) there is a description of the onset of the visual side effects when treatment began. At the time the primary effect seemed to be a reduction in my ability to focus on things that were close-up in my visual field. I lost most of my natural monocular vision in which the left eye focused up close the right eye focused at a distance. It eventually progressed to the point that, at the end of treatment, there was little difference between the two eyes. The left still focused a touch better close up and the right a touch better at a distance, but there was no longer a significant difference.

There was also some variation in the strength of vision. It seemed that from month to month there were variations in the amount of short sightedness I was victim to. Sometimes, it seemed my glasses were not nearly strong enough and other times they were far too strong. I took to not wearing them most of the time and carrying around reading glasses for when there was a need to focus closely (for those of you in the San Francisco Bay Area, Ichiban Kan the Japanese discount store has reading glasses for $1.50 per pair; and stylin ones at that). I decided not to get new glasses or even try to determine my prescription until the treatment was over.

Several months after I had been dropped from the experimental study and was on the standard treatment, I began to notice that there were sparkles in my visual field. They were not large nor were they particularly intrusive, but they were apparent when I wasn’t focusing on a specific area. They were also apparent at the edges of the visual field, particularly in low light. I kept thinking that I saw something out of the corner of my eye and when I tried to turn and focus on it, there was never anything there. It took a while to realize that it was due to the sparklies and not to flies, birds, mice, rain, ghosts or any of the other things that appear in the corners of your vision.

Now that 9 weeks have passed since finishing the interferon and Ribavirin treatment, there has been some reversal of the visual side effects. The sparklies in the visual field and at the corners of my eyes are mostly gone. They still appear when I am very tired, but they may have always done that and I wouldn’t know it given the state of my memory. The variations in my strength of vision have stabilized as well. There are no longer times when I cannot wear glasses because they make my eyes hurt. Perhaps it is time to visit the eye doctor and get a new prescription and even new glasses (Costco here we come). There has been no change in the loss of monocular vision. My two eyes remain slightly different, but the old ability to read with the left eye and focus long-distance with the right seems to be gone permanently.

The side effect of the eyes getting tired rapidly during reading and watching a movie, TV or computer screen has also begun to reverse. So much so that this past weekend my lovely wife and I were able to take in two movies in two days. These were not “films” either with long static takes of characters talking or meditative pans across beautiful scenery. These were eye-taxing action films with rapid changes in focus, explosions, chase scenes and all the things you watch movies on the big screen for. Yes, we saw “Cowboys and Aliens” and “Rise of the Planet of the Apes” - two brilliant examples of all that is right in Hollywood filmmaking. At least with Hep C, the treatment doesn’t make apes smarter and people dead. We got that going for us…

Changes In Visualizations During Treatment

There is a great deal of evidence that creative visualization can influence the actual physical and mental performance of people in the real world. Studies have been done on academic test performance and athletic performance to use two examples and the evidence has indicated that if one group spends a specific amount of time visualizing successfully completing a task and another group spends the same amount of time practicing the task, the two groups have similar results upon undertaking the task. There is also evidence that the same sort of creative visualization influences recovery rates and treatment outcomes in disease situations.

It was with that in mind that I created my own visualization when I started HEP C treatment in the RG7128, RO5024048 clinical trial. I imagined that the polymerase inhibitor RG7128 was an armored division of fast moving powerful tanks that struck quickly and with lethal force at the HEP C virus. The interferon and Ribavirin were the methodical infantry units that followed the tanks and mopped up the remaining resistance from viruses that were either entrenched or bypassed by the fast moving armor. I visualized that image often throughout the clinical trial. After being tossed out of the clinical trial because of a viral breakthrough, my visualization metaphor changed. My tanks had run out of gas and were now abandoned by the side of the road.

After transitioning into Standard of Care therapy I still used a military image when I thought about my battle with the HEP C virus, but now it had switched to an image of slogging trench warfare with my infantry (interferon and Ribavirin) in hand-to-hand combat with the virus. It was going to be a 12 month struggle but they were attacking an already weakened foe and had strength of numbers and better supplies on their side. I used this image for several months and sure enough, after 14 weeks the numbers came back negative indicating my infantry were winning.

Then there was the possible viral breakthrough in December after six months of treatment and the subsequent return to being virally negative in January. The metaphor was fairly tattered by then but I tried to hold to it. As the months of treatment ground on and I eventually went on disability, the only military image that seemed to fit was the battle of Stalingrad; except I didn’t know which side I was on. Holding on till the end of treatment was the only concern. This carries on the military metaphor quite well actually. At the end of a long tour of duty on the front lines, the primary concern a soldier has is surviving until it is over.

At the end of treatment, the viral load was undetectable and the viral activity was negative so we can assume that the visualization was either successful and contributed to the treatment or at least did not inhibit the effectiveness of the treatment. I would recommend the technique to anyone undergoing any kind of treatment for disease. There is no need to use a military image, whatever is vivid and emotionally engaging will work. It is no doubt easier to maintain the metaphor for shorter treatments than longer ones, but anything that can help healing is worth pursuing. Just hope your metaphor doesn’t run out of gas on the side of the road. There is nothing sadder imaginarily speaking than watching your elite troops quit the battlefield.

Puzzling Evidence

Viral Load Blips Up and Then Back Down

What I feared came to pass at the end of December; I did indeed have a viral breakthrough. My viral load blipped up to 430 IU/ml. This is a relatively small number, though it is a log scale rise from the less than 43 that is undetectable.

It happened at the end of the year, during our open enrollment period when I was not sure whether I would still have the same insurance that would allow me to stay at California Pacific Medical Center (CPMC).

It happened while some of my health care team was taking some well-deserved time off from work.

It happened while I was scrambling to make sure I would have continuity in my medications as all my meds were running low. (While we are told at length not to let our prescriptions run low, the insurance companies will not let you renew expensive meds early.)

This led to three decisions about the disease.

One, there was not a follow-up test to determine whether the breakthrough was real or a false positive. No one knew whether I was going to be covered and no one wanted to be out of pocket the expense of a confirmatory test.

Two, Dr. Bzowej decided that it might be best to discontinue treatment. This was the second time I had a viral breakthrough at 24 weeks on two separate types of therapy (the RG7128 test and the Standard of Care therapy). She felt that I might be the sort of patient that needs 3-drug therapy.

Three, I had finally gotten my meds renewed just before my coverage changed and since I had a month’s worth of Interferon and Ribavirin left, I thought that I might as well keep taking it until it was gone. There was also a brief period of time when I thought I would continue at CPMC, so I thought that I should keeping taking it until the monthly test at the end of January and see what was happening.

I kept up my medication schedule through the month. Though by the end of January, I knew that I would not be covered for CPMC after February 1st, I went in for the viral load test anyway. By the time the results came back, my coverage had expired but the Nurse Practitioner at CPMC, bless her heart, called my with the results anyway. I was back to undetectable. Good news but what did that make the December test, true viral breakthrough (not good) or false positive (not bad)? We’ll never know

When I started at Kaiser, they tested my viral load on February 10^th. I came back undetectable in that one as well, though they said there was qualitative detection. That means that there is some evidence that there is still viral activity, but it is so low that it cannot be counted. I am not completely sure what that portends as depending on what you read it is either very bad or indeterminate.

I have been keeping to the medication schedule and go in tomorrow for another viral load test. We’ll keep moving forward.

As a final note, the TV show Royal Pains comes back this summer for another season. Write in and let the producers know we want to see more of “Fisherman Jim” so we can follow the course of his treatment for Hepatitis C. I believe he is the only character on a prime-time TV show with Hep C. I hope he recovers well on the show, but given that he is still running a fishing boat while undergoing interferon and ribavirin treatment, he sure makes me feel like a wuss. That’s the magic of television…

The Magic Bullet Theory

Waiting for the “Next Best Thing”


Last Tuesday was the annual Holiday Pot Luck for the twice-monthly Hepatitis C support group that meets in the California Pacific Medical Center Pathology Conference room. There were about two dozen people there and, in the tradition of potluck dinners everywhere, enough food for twice that number. Best of all, there were plenty of desserts.

Of the two dozen people or so people attending, about half were either currently in treatment or had successfully completed treatment; another quarter had undergone treatment and either failed to respond or the virus had reappeared after the completion of treatment and the last quarter had yet to make a decision about treatment. About half the folks who had successfully completed treatment and never had a recurrence of the virus were people with Hepatitis C genotype 2. This genotype has about an 80% chance of clearance, and excellent prospects of a sustained viral response, with 24 weeks of standard interferon and ribavirin treatment.

After people had settled down with their plates of food and glasses of non-alcoholic libations (ginger potions of all sorts were quite popular), everyone reported on their general state of health, how they felt and any significant issues they had that might be caused or intensified by the disease or their treatment status. Several common themes emerged as people told their stories.

The people who had successfully completed treatment reported that by and large they felt they were back to normal functioning (one individual reported that she felt that after 2 years she still did not feel she was back to her previous cognitive function level). They felt their energy had returned, they no longer had shortness of breath, their strength was back and generally they were physically in good condition. Most felt that their mental faculties and their memory had returned to pre-treatment levels as well. To a person, they reported that it took considerably longer to return to full function than the time that is considered standard by the medical establishment. The usually quoted time to recover from the effects of interferon, ribavirin and the other associated drugs used in treatment is 3 to 6 months. Everyone reported that the time it took them to recover from treatment was in the range of 6 months to 1 year with a few reporting longer times than that.

The people currently in treatment (and for that matter, the folks who had completed treatment) reported two side effects as most debilitating: fatigue and brain fog. The fatigue ranged from merely difficult to extreme with no one reporting only mild fatigue. That said, person after person stated that the most irritating and frustrating side effect was the cognitive deficit associated with interferon brain fog. It was not just the increased memory difficulties, it was the inability to concentrate, the ease of distraction, the loss of train of thought that drove everyone crazy. Most folks also reported nausea of varying degrees, insomnia, sweats etc.; but those paled in comparison to the frustration of brain fog and the annoyance of being tired all the time.

The rest of the people at the meeting, the non-responders to treatment and the people yet to attempt treatment, all had the same outlook: they were waiting for the new and better drugs to become available. They had very different reasons for this viewpoint, but it was surprising to see the uniformity of their point of view.

The non-responders and fail-to-sustainers had all failed at the standard interferon and ribavirin treatment. They and their doctors had come to the conclusion that the two drug standard treatment was not going to successfully defeat the virus in their bodies. They need the additional punch of one of the new drugs in order to have a real chance at success. You can’t argue with that conclusion, when what is available has failed, you have to await further developments to move forward.

The people who had not done any treatment had different reasons for waiting for the next new and better drugs. Many were afraid of the side effects but most were looking for a therapy with a better chance of success that the standard therapy. The standard treatment has about an 80% chance of clearing genotype 2 Hepatitis C. It has a 40-45% chance to clear genotype 1 Hepatitis C. The drug most likely to be approved next is Telaprevir, a protease inhibitor (Boceprevir, a similar protease inhibitor is supposedly not far behind). Telaprevir has demonstrated in research testing that, in combination with interferon and ribavirin, it has a genotype 1 clearance rate of about 60-65% (Boceprevir has similar test results). On the surface the reasons for waiting for the new drugs are clear-cut, 60% is a much better chance than 40%. There are a lot of other factors to consider before pinning one’s hopes on the next best thing, however.

First is the discovery of variations in the IL28B gene and how these variations affect response to treatment. If you have the CC variant of the gene, the evidence indicates that your chances of responding well to standard treatment rise to the 60% level, or about the same as the telaprevir response rates. The test to determine which variant you have is available, not extremely expensive and clearly gives information you can use to make a decision about treatment. For a more info the link is here.

Secondly, the new drugs are not assured of either approval or timeliness. The latest Telaprevir application was submitted to the FDA in November, 2010 which means a decision is 6 to 10 months away. Boceprevir has not even reached the “it’s coming in the next x months stage of rumor yet.” There is also the, admittedly small, chance that Telaprevir is never approved. I have many friends who are in the gene-splicing and drug development fields who report a number of instances when companies were extremely confident of FDA approval only to be turned down during the final application. The FDA might come back with concerns that require further testing or additional data submissions, all of which could move the timeline much further out. The promising new polymerase inhibitors (RG7128 and RO5024048 for example) are only just beginning phase II trials which means they are at least 3-5 years away from any sort of approval and only if they succeed in further trials. There are other drugs even further away, etc.

Thirdly, these new drugs are expensive. They project to be about twice as expensive as the current interferon and ribavirin. The plan is that you only need 24 weeks of treatment, but it will be a very expensive 24 weeks. Therefore the question of once the drugs are approved how long it will take for them to be added to insurance company drug formularies so they will be covered by your insurance becomes extremely important. As we all know, insurance companies can be quite recalcitrant about approving new therapies.

Finally, there are all the considerations about your personal situation. What stage is your liver disease? What is your viral load? What is your general health? How old are you? These questions only start to list your issues. What is your financial situation? What is your insurance coverage? What is your work situation? Do you have solid family support? If you have to go on disability, how would that affect your job future? Can you even tell your employer, family, friends and coworkers that you have the disease? All of these and more are considerations that may be more important than the rates of viral response of the various drugs.

Remember two things as think about all the ramifications of when and how to deal with your Hepatitis C: first, there is always a newer, shinier, more promising therapy in the future and second, the best is the enemy of the good.

Bad News Is Not So Bad News 1

The situation of having a viral breakthrough and the decisions made about treatment in light of that breakthrough is a good illustration of the differences between undergoing treatment under the protocols of a drug trial and undergoing treatment under the Standard Of Care supervised by a hepatologist. There is a bit about that is this post.

I met with Doctor B, the doctor in charge of the Roche RO5024048 study today. I was getting the blood tests to confirm that I indeed had a viral breakthrough and met with her as part of that process. Given that it would be highly unusual for the tests to show that I was again undetectable, I am going to be dropped from treatment under the protocols of the study (the protocol is that if you show any viral activity at week 24, treatment is suspended). That being the case, I asked Dr. B what her opinion was of the value of my continuing outside the study using the standard interferon and ribavirin treatment.

She was initially noncommittal and wanted to see my viral load history and my dosing history for the Pegasys and ribavirin. She saw that my viral load had been undetectable for 18 weeks. She also saw that I had spent 5 weeks on a ¾ dose of interferon, had skipped 2 doses completely due to low neutrophil counts and had just resumed injecting at a ½ dose level. I had also been on a reduced dose of ribavirin for the past 7 weeks. When she saw that the breakthrough had occurred after the two skipped doses of interferon, she warmed to the idea. She asked me how I have been tolerating the treatment. I told her I had a lot of the usual side effects but that the addition of an antidepressant had really made a huge difference in my mental outlook and my mental energy. Then she pointed out the reasons she thought it might be worthwhile to pursue.

If you undergo treatment under normal circumstances, you can be prescribed drugs to reduce the loss of neutrophils (neutropenia). You can also be prescribed meds to help with the hemoglobin loss as well. They don’t do this in drug trials because they are trying to control the number of variables as well as to determine the effect the study meds are having with the interference of other drugs. Being able to take these additional medications means that the full doses of interferon and ribavirin can be maintained for the longest possible time during the course of treatment. It goes without saying that this increases the chances for a successful outcome.

In my case for about 40 % of the time I have been in the study, I have been taking reduced doses of just those standard medicines that have proven so successful against Hep C. Moving forward with treatment under full doses means I have a chance to reach a successful outcome. Given the 6 months I have spent on this so far, I don’t see why I shouldn’t grab that chance.

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.

New Developments in Roche RO5024048 Combination Treatment Drug Trial

I went in last Friday for my week 18 tests. Before we started the usual blood draws, EKG and vital signs routine, there was a new development. There is a change to the study protocols that required signing a new consent form. There had been a previous, minor, change that necessitated my signing a one-sheet addendum to the original consent form, but this change involved major changes and resulted in my having to agree to changes throughout the agreement. The new protocol is very good news for the safety of the drug and offers an additional chance for study under-responders.

What is happening is that Roche is adding another treatment arm to the study. In this arm “The safety and efficacy of open-label HCV polymerase inhibitor Prodrug (RO5024048) in combination with PEG-INF and RBV in the subset of patients who only received currently approved combination of SOC in the main study and who did not demonstrate an early virologic response (Treatment Failures) will be evaluated.” What this means is that the people in the arm of the study that received the SOC (pegylated interferon and ribavirin) and did not receive the experimental drug and who did not have a log 210 reduction in virus after 12 weeks or who had virus still in the blood after 24 weeks and thus had to stop taking all medications will get a shot at receiving the full triple-drug therapy.

The new arm (Group F) will take RO5024048 1000mg twice daily for 24 weeks in combination with the SOC of weekly Pegasys (interferon) and daily Copegus (ribavirin), followed by an additional 24 weeks of the SOC (Pegasys and Copegus). The study will be open-label meaning patients and doctors will know the medications they are receiving.

The best aspect of this new arm being added to the study is that the folks who were in the placebo arm of the original study and did not respond, now have a shot at getting a drug whose initial results against the HCV virus are very positive. One of the problems with experimental studies, particularly early stage studies, is that there is always an arm of the study that does not receive the experimental drug and thus you are potentially both entering a difficult treatment process and giving up your treatment-naïve status and not getting anything but the treatment you would have received outside of the study. Here, even the folks in the placebo arm who did not respond, will get a chance to attack their Hep C with cutting-edge treatment.

The other positive news is that the safety issues they were testing for regarding possible kidney damage have shown themselves to be of lesser importance. One of the reasons they are adding this arm to the study, I was told by my research coordinator, was that the kidney problems were not showing up in the test subjects so far in the study. That is one of the reasons that the length of treatment in the Group F arm will be extended to 24 weeks from the 12 weeks of treatment the rest of the study arms received. The researchers believe they can give the drug for longer periods without undue fear of kidney damage.

There is another potential development in the study as well. There is a petition in front of the study governors to allow test subjects in the low dose arm (Group A) of the study who had rebounds in their HCV Viral Load amounts to join the Group F arm as well. Group A received 500mg of RO5024048 twice a day, the other arms receiving the experimental drug either received higher doses (1000mg twice daily) or a more concentrated dose (1000mg once daily). There is apparently some thought that the dose in Group A might not have been powerful enough to have the desired effect on the virus and that by including those patients in Group F, they would find out if a higher dose had the desired effect even on people who had been already treated with the RO5024048.

The developments in the trial seem all to the positive to me. People who did not respond to the SOC placebo treatment, get a chance to actually receive the experimental triple-drug therapy, the kidney damage issues seem to be less of a concern than originally thought and finally even those who did not respond to a low dose of the drug might get a chance to see if a high dose can smack down their Hep C.

Ribavirin, You Take My Breath Away.

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

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

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

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

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

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

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

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.

On the Road Again – Yet Another Retest

My lymphocytes are low again and they brought me in for another retest. They are at 410 and anything under 500 warrants a retest as they are being conservative for the purposes of the study. AVB told me that in standard clinical practice the lymphocytes can drop to 350 before they take action. I wish that were the case as this seemingly constant traipsing back and forth for a couple of vials of blood is tiresome.

I realize the complaint is a hollow one. I am, after all, getting a cutting edge and, to this point, extremely effective new compound to attack my Hep C. But after 11 weeks now of being tired and breathless and fogged in the head, it just starts to get less exciting. Even the fact that a whole new set of health care professionals know me by name begins to lose its charm.

The good news is they gave me my latest (week 10) viral load results and I am still UNDECTECTABLE. 3 straight tests covering 4 weeks of time at that level. Keep it up guys, look under every molecule to find those viruses and kill them. There is no peaceful coexistence with this virus. I want them all dead, even to the bits and pieces. There is some small mental exhilaration in having something I can root wholeheartedly to be destroyed, killed, eradicated and just stomped on. Free your inner barbarian and have it join with the RG-7128 aka RO5024048 and just go out and slaughter.

Week 10 Tests and Week 8 Results

Today was week 10 testing. All the usual tests though only 11 vials of blood for this series.

The important point to me was the Week 8 test results: viral load UNDECTECTABLE. Unlike week 6 when the test detected viral activity though the number of virus per ml was so low as to be uncountable, this time the test reported no detectable viral activity at all. So there it is, the polymerase inhibitor RG-7128 aka RO5024048 knocked the virus down from just under 13 million per ml to undetectable in 8 weeks.

AVB told me that the earlier a patient achieved the undetectable level, the better the chances are for an SVR (sustained viral response) over the long term. Eight weeks is pretty fast in general and tremendous for someone with my initial viral load. A few of the folks I have talked to about there treatment told me that they started with what was considered a high viral load and theirs was in the 3 to 4 million per ml range. Mine was about 4 times that number at the start of the treatment.

While it does not seem to have added any significant side effects to the general run of the SOC side effects, it doesn’t seem to have reduced any of them either.

The other good news was that my neutrophil count had bounced back up over the 500 level and I could continue the experimental drug. Even though I have hit undetectable levels and there is only 2 weeks left in the polymerase inhibitor part of the experiment, I still want to have the full course of treatment. I want that extra two weeks of this drug completely screwing up the ability of any virus left to reproduce. I want the full amount of destruction to be visited upon this virus. I want them hunted down and killed for as long as possible by the most complete range of attack drugs.

The main new factor to report on the side effect front is that my concentration and memory are continuing to deteriorate. As an example, I did not bring in a chilled urine sample for this test period. Why not, you ask. Because I stepped in to the bathroom after I woke up with my urine collection cup in hand, set it down on the sink and then urinated luxuriously and at length while completely forgetting to get a sample of if for the test. I remembered my test appointment and brought all my stuff with me, but remembering to piss in a cup was more than my brain was capable of.

Testing, Testing, Testing

I went in today for a retest of my Neutrophil count. This endless testing is beginning to wear. Since the start of the Study, I have been in for Baseline testing and week 2,4,6 and 8 testing each of which involved drawing 10-16 vial of blood. I have also been called back for retests my Neutrophil and Hemogloblin levels after the last 3 tests. I have been to visit these guys 8 times in 9 weeks for various testing.

I am extremely lucky that I live in San Francisco. At least one of the test subjects lives in Eureka, which is a good 5-6 hour drive from the Bay Area. I can only hope they have not had to have any retesting, or if they have, that Roche has contracted with a lab in that general area to do the retests. If I had to drive 5 hours to have them draw 2 vials of blood to verify a borderline result, it would piss me off no end.

I know that they are doing this because the fact that they are testing an experimental drug makes them extremely cautious. The various levels that are causing them concern are levels above those they accept during standard treatment. One of the individuals in our support group had their Hemoglobin drop into the low 9’s during their treatment. In my case if it drops below 10 (and it has been testing that borderline for a few weeks now) they will reduce my Ribavirin dosage to try to forestall any further drop in the level.
There attention and care are appreciated but it feels like the Hepatology Dept. of California Pacific Medical Center is becoming a second home and while everyone is very supportive, positive and friendly, there are better places to be than in a waiting room, an examination room or a blood drawing site.

And just to make sure that I don’t present myself as not being self-serving – we don’t get paid for the retesting visits only for the scheduled testing visits. It’s not the money per se, but it is the fact that even for someone as conveniently located as myself, any visit requires a minimum of 2 hours time and generally 3 for the long visits. You have to get there, be there and get back home or to work and all that takes time and energy. But, hey I’m not going to go on strike and the experiment is working, at least on me.

The major worry is that if the low levels of Neutrophils are confirmed, they will remove me from the experimental drug, the RO5024048 aka RG7128. That’s the stuff that has been working and it is definitely the stuff I want to continue. Go ahead and reduce the Interferon or Ribavirin dose, just don’t take away my Attila the Hun drug. I want to have those ruthless little molecules hunting and killing virus for as long as I possibly can.

It boils down to spending a couple of hours having 2 vials of blood taken so they can recheck blood component levels to determine whether or not I get to keep getting “the good stuff” as long as I possibly can.

No pressure in that eh?

Week 6 Results

I went in yesterday for a blood redraw to redo testing for my Absolute Neutrophil count. The level of neutrophils in my blood is in the mid 500 range which is approaching the lowest number (500) they allow before they start adjusting or removing medications.

Because of going in for a retest, I was able to see my Week 6 lab results 7 days before my next official testing appointment.

First of all, my viral load is now less than 15 IU per milliliter. That number means that they can no longer detect the actual count of virus in the blood. They label this state "Undetectable" and it is the goal we are all striving for. It is great news.

This means that I have gone from 12,900,000 IU per ml. to under 15 IU per ml. in 6 WEEKS. This response continues to reinforce AVB’s (and my) belief that I am on the RG 7128 Polymerase Inhibitor as she has never seen a viral response like this on the standard therapy. If this stuff works this well on the other folks in this study and does not have side effects that are any more (and hopefully less) serious than the standard therapy, this is great news for those of us with Hep C. The study may also confirm that this new drug (combined with the Standard of Care) can achieve a Sustained Viral Response (SVR) in 24 weeks instead of the 48 weeks that is the current standard.

Let’s face it, any reduction in the length of time we endure the side effects from all this combined with a potential higher Sustained Viral Response (SVR) percentage, is the best news possible.
Secondly, AVB and I went over the total lab results package in serious detail. This is something I cannot recommend more highly. No matter what therapy you are on, go over the test results thoroughly and ask lots of questions about what the various numbers mean in terms of your general health.

The key item I discovered in this round is that my Hemoglobin is at 10.9 (the normal range is 12.7 – 18.1). Hemoglobin is the blood cell that carries oxygen around the body. My baseline number was 14.8. That means the hemoglobin content in my blood is 27% lower than it was at the beginning of the test only 6 weeks ago and I have become anemic. No wonder I am out of breath after relatively light exercise and movement and tired most of the time. My blood can only carry ¾ of the oxygen it could 6 weeks ago. It’s not that I have become a doughy sack of fat, it’s that I don’t have enough hemoglobin to carry the oxygen.

While that is a bit scary considering I now also running low on the white blood cells that fight infection, at least I know why one of my symptoms is happening and I can see it in hard numbers.

Week 4 Results: The Future’s So Bright….

The Polymerase Inhibitor seems like a very promising compound, at least from the viewpoint of someone infected with Hepatitis C.

I do not know officially that I am getting the RO5024048 experimental drug. My assumption is based entirely on the viral load results and the fact that AVB, the study coordinator has told me that her 14 years of experience in managing trials and watching the results of those trials, she has not seen Viral Response at that level unless there is something acting in addition the standard Interferon and Ribavirin.

But given my results and her gut feeling, I think that I am receiving it and that it is working tremendously well at inhibiting the reproduction of the Hep C virus.
My viral load after 28 days in treatment is now at a level of 195 IU per milliliter of blood.

195 viruses per milliliter is a log 4.82 reduction from the baseline level at the beginning of the test. It is also beginning to get near the non-detectable level that indicates the body is clearing the virus from the blood.

This is great news as it might mean number of things moving forward if these results hold up. It could mean a much higher percentage of patients with a sustained viral response (SVR). It could mean that the treatment time could be reduced in length which would mean a major reduction in the level of suffering endured by patients undergoing treatment. It could mean variations in the levels of drugs administered which might again have an effect on the level of side effects that must be endured.
There is even a study in the proposal stage that would involve treatment using a combination of Polymerase and Protease inhibitors and no Interferon or Ribavirin. If that sort of treatment became a reality, then future patients with Hep C might never have to undergo the joys of Interferon and Ribavirin side effects.

All of this is extremely speculative and primarily the result of me being way too happy and perhaps overreacting to my person viral load results. But considering where Hep C treatment was 10 years ago, and the exciting new avenues of research opening up seemingly on a weekly basis, the future is indeed so bright we gotta wear shades.

Week 2 Results: Giving It The Lowdown

I went in for the week 4 testing and got the week two results. Not that it was all beer and skittles for the testing. This particular blood draw and assorted other tests was to occur before my daily med dosing. To explain this, they gave me a sheet indicating what would occur during this type of test. What was not emphasized was that the sheet they gave me was an example of what could take place during a typical pre-dose test, not what would occur at the actual pre-dose test that I was to undergo.

So there I was at 8:00 a.m. instead of the usual 9:00 a.m., dazed and confused, with all my drugs, needles, vials, sharps container and studly fanny pack. Why, because I remembered seeing the 8:00 a.m. start time on the sheet, that’s why. The fact that I had misplaced the sheet – okay, I lost it – didn’t help matters. About 35 minutes later AVB came in to work and saw me sitting in the waiting room and asked why I was there so early. When I explained about the time on the sheet and the fact that it was pre-dose, she had the wonderful good grace to look embarrassed. She went on to explain that the sheet was a sample and that I was scheduled for my normal 9:00 a.m. appointment.

At any rate, after the sorting out and the trek back to the appointment room, they did the test sequence: 16 vials of blood (a new record), the 2 EKGs, the 2 blood pressure readings and the usual pulse and weight.

Two things stood out. My blood pressure was down to 133/85 from 155/102. AVB was very happy about this as she told me that after the last few blood pressure readings, the research scientists were going to require weekly appointments for the duration of my participation in the study unless my BP went down immediately. Well it did. I personally think that my BP started to go down the moment I got the viral load data from the first week of treatment. My BP had been going up steadily at every testing appointment and I think the data I got for the first week of treatment that showed the treatment was working reduced my stress level immediately.

The other is that my weight is not going down much at all. It has only dropped a few pounds since the start of the study. As one of the side effects of the meds is often some serious weight loss, this is somewhat of a good thing – to the researchers. After the usual holiday larding-on of poundage, I was thinking that with all the other unpleasant side effects, at least I was going to get some weight loss out of it, but nothing significant so far.

I also wonder about the amount of blood they take. I know they need the data on a wide ranged of blood contents but 16 vials of blood at even ½ oz. per vial adds up to 8 ounces of blood every two weeks – perhaps more if I am underestimating the size of the vials. Given that the Pegasys suppresses white blood cell production and the Ribavirin suppresses red blood cell production, does taking that much blood contribute to the potential anemia and low white blood cell counts? Does the test protocol itself contribute to the reported side effects of the drugs?

But now the news that matters: Viral Load.

My viral load was down to 1110 IU per ml. That is a log 4.06 reduction in viral load from the start of the study. Since the week-two blood draw was done early, that means that in 11 days the viral load went from 12,900,000 IU per ml. to 1110 IU per ml. The Mongol Horde is continuing to slaughter the viral peasants. Or perhaps Patton has blown through the defensive line and is wreaking havoc in the enemy rear areas. It doesn’t matter what the metaphor you use to visualize the effects, that fact is the treatment is working and I’m getting a serious viral response. AVB said again, that she would bet money I am on the Polymerase Inhibitor; that you just don’t see that kind of response on standard therapy.

I hope it holds up and I hope it transforms into a sustained viral response. I was a bad candidate for treatment with the viral load I started out with. If this stuff adds that much viral response to the standard therapy, it means a lot of folks with high viral loads and genotype 1 Hep C, have a lot better shot at clearing than they did before.
It is all far too early to talk like this, but I am excited as hell that this is happening and that, so far, I have been able to tolerate the therapy.

Let us hope that in the immediate future, that RG7128 or RO5024048 or the Polymerase Inhibitor or whatever you want to call it, keeps kicking viral ass.

A Brief Note About Caffeine

The side effect that is most acute is the reaction of the meds with caffeine. I don’t know which one it is, whether it is the Interferon, the Ribavirin or the RG7128 aka RO5024048. What I do know is that I have had to cut my caffeine intake to near zero.

I was never a coffee drinker. It always made me jittery and I never liked the taste. I never like tea much either, the taste was not compelling. The caffeine I took in was all in the form of caffeinated sodas. Sometimes several of them a day. Then as I got older, I had to cut down to nothing caffeinated after about 2:30 in the afternoon, as I would be awake at nights if I had any later than that.
Several years ago, I trained myself into the habit of having a glass of green tea in the mornings at breakfast and that became my primary intake method, along with a soda or two during the day.

As soon as I started the study, I had to cut out all caffeinated sodas. If I had so much as a diet Dr. Pepper, I would get jittery and have the attention span of a gnat. Then I started to cut down the size of my Green Tea in the morning. If I had a full glass – about 10 ounces, I could definitely feel the effects and not in a pleasant and stimulating way. So, it was a small cup of tea in the mornings and then nothing the rest of the day. I still noticed some effects though, and realized that I was going to have to cut out chocolate as well.

Fine, the fatigue, itching, weakness, shortness of breath, irritability and insomnia were all things you can fight your way through, but NO CHOCOLATE, that’s just mean.
And I’m weak, so I am not going to get rid of it entirely, but I have cut way back. It all seems to be helping and I’m more calm and less irritable, but it is not something I read about in the discussions of either the Standard of Care treatment or the experimental drugs.

So be aware, it might help you a great deal to cut way down on your caffeine and anything that helps get through this is something to consider.

Week 1 Test Results: Get On The Good Foot

Well, I went in for the week two tests. The tests involved taking 12 vials of blood, 2 EKGs, 2 Blood pressure tests, I chilled urine from home, I warm sample while I was there. But this is just details, the real meat came when I got the viral load numbers from the first week of treatment: 4,260 IUs per milliliter. YES!!!

In only 7 Days of being on the treatment program my viral load went from 12,900,000 IUs per ml to 4,260! Now THAT is an effective Viral Response.

AVB said that – though the test is blind and we won’t know for sure for over a year – in her educated opinion those kind of results mean that I must be getting the RG7128 Polymerase inhibitor. She said that less than 5% of people getting the standard treatment have that kind of viral response and even those don’t usually show it so quickly.

She also stated that being able to share the results like this is unusual for a research study. Most of the studies have the results blinded as well as who is taking which meds, so that no individual in the test finds out specifically what their personal viral response is. In this one, the viral load data are not blinded so we can all find out how the virus in our bodies is responding to the drugs. My viruses are going down like foot soldiers in the face of the Mongol Horde.

I know that everyone has different responses to good news, some are overwhelmed, some are stoic, some respond quickly, others have a delayed reaction, in my case I could feel a sort of vibration running up and down my arms and legs and a stupid grin breaking out on my face. You spend a great deal of time and mental and emotional energy gearing up for any kind of serious treatment. In a case like this, you combine the normal buildup with a sort of brainwashing behavior to convince yourself that YOU are one of the 80% who are going to be getting the good stuff, the new stuff, the stuff that really works. Then you screen and are accepted and wait for the study to begin and then wait after it starts for the results to come in. The whole time you are keeping up this suspension of reality in your mind. Yes, I am getting the new drug and it will work as well in me as it did in the original phase 1 test subjects and it will be worth the risk of the side effects because, damn it, it is going to work.

The feeling that the results brought – Yes It Is Working! – is a combination of elation and relief. A log 3 drop in viral load in 7 days, when a log 2 drop by week 12 is the requirement to continue treatment, is overwhelming. I couldn’t wait to get home and call my wife - Which I did as soon as I got in the door. I didn’t trust myself to try to tell her the news while I was driving.

It’s a good thing I waited because as soon as I called her and told her and she got all excited, I started crying. She was so excited, so happy for me, so relieved to hear that it was working and that we were vastly probably on the test meds, it just thrilled me to be able to tell her something that would make her that happy.
It was such a relief to think that it seems to be working and that I am getting the test drug, which is the reason we all signed up for the study in the first place. We all wanted a better shot at clearing the virus than was offered by the standard therapy and now I know I have that chance. In the midst of the fatigue and heartburn and nausea and itching and all the rest, I know it’s because I have a great shot clearing.

That’s another thing that AVB said, “keep this result with you so that when you hit your walls in treatment, you can take it out and look at it and see why you are going through this.” I feel like framing it, but I know there are lots more results to follow and anything can happen. The one fly in the ointment so far is that my blood pressure remains naggingly high: 155 over 102 this time around. They want me to see my primary care physician about the blood pressure, because if it stays high it might affect drug dosage and other treatment parameters. So it’s off to Doctor K for another round of arguments about which drugs he may want to give me for blood pressure. Oh well, it’s all for a good cause.

But nothing can dampen these feelings. I’ve got a real shot at clearing. It’s never a guarantee for the long term, but it’s great start and I will clutch these results to my bosom as tight as I can until the next news comes. It is definitely time for dancing.

One Week Later – The First Lost Weekend

The 1-week follow-up appointment was the first chance to get a benchmark on what I was experiencing. They allowed me to change my interferon injection to Thursday evening. This gives me an extra 12 hours or so for the side effects to quiet down before returning to work on Monday. They wanted me to take the pills in their presence again, so bringing food was still a must.

This time they only took 11 vials of blood, the 2 EKGs, blood pressure twice and a warm urine sample in addition to the chilled one I brought along from home (in the flashy Roche fanny pack, of course).

I gave a full report on the side effects I have been experiencing up to this point in the study. Low, but persistent, levels of nausea, fatigue, some irritability (I reported this, but others who know me are not so sure that the irritability is any worse than normal…), headaches, muscle aches, low energy, bouts of sadness and crying, some minor chills and most importantly to me - insomnia. AVB, the truly wonderful coordinator of the study, was quite thorough in questioning me about the side effects. She was also emphatic in letting me know that they would do whatever fit within the protocols to manage the side effects. One of the things she told me was that once the study started, the researchers at Roche would do a great deal to keep me in the study. They want the data and having people drop out of the study definitely reduces the statistical validity of the results. So a bit of the power shifts from the drug company to the study subject once the study is underway and this can be exploited to the benefit of the study subjects.

It was good to hear this and to realize as well that the people at California Pacific Medical Center (CPMC) who run these studies, are trying very hard to make the experience of treatment as non-debilitating as possible. They want to know if you are having problems and want to help you solve these problems as much as they can.

The high point of the visit was going over the test results from the previous visit. The tests in the first week were all done with blood that had been taken just prior to treatment beginning. So they served as a baseline for the various blood cell and enzyme levels moving forward through the treatment. The most important one to me was the viral load.

When I was first diagnosed with Hep C, I had a viral load of just over 4,000,000 International Units (IU) per milliliter (ml) of blood. This, I was told was considered a moderately high viral load. When I screened for this study 2 months ago, I reported a viral load of 6,270,000 IU per ml of blood, clearly an even higher viral load. The results from the week one test were 12,900,000 IU per ml of blood. This put me just below the high viral load segment of the Hep C population. Now AVB spent some time telling me that the viral load fluctuates all the time and can jump up and down by millions of IU from one day to the next. I realize that, and my own research both in books and on the internet, confirms what she told me. Nonetheless, I can’t say I was happy to see the progression from 4 million to 6 million to 12 million. I am very anxious to see the results at the next appointment as they will show the results from the first week of treatment and I really need to see a drop in the viral load to believe in this study.

The rest of the tests were fine. I have a decent amount of red and white blood cells which I will need to withstand the white blood cell suppression of the Interferon and the red blood cell suppression of the Ribavirin. The enzymes were fine and my heart is working okay as well. Perhaps too well as my blood pressure has been a bit high over the two appointments and they are a bit concerned about that.

All in all an okay visit. The next one is only a few days away (trust the Swiss to start a portion of a major drug study during the holidays – the worst time to try to you’re your subjects to have consistently timed dosing and for the researchers to get consistently spaced testing) and I will be getting the first week of treatment test results. I am both excited and terrified to get them.

Treatment Starts Tomorrow or I’m Dreaming of a Flu-like Christmas

I’ve been accepted for an experimental drug therapy experiment run by Roche Pharmaceuticals. It is to determine the treatment efficacy of a polymerase inhibitor named RO5024048, it’s also called R7128. The early tests have shown a Rapid Viral Response (RVR) in 75% of patients which compares to an RVR of 25-30% in the standard therapy. The standard therapy is Pegylated interferon (brand name Pegasys or Peg-intron) and Ribavirin (brand name Copegus). You inject interferon once a week for 48 weeks and take Ribavirin twice daily for the same amount of time.

This experiment adds the polymerase inhibitor to the standard therapy (also know as standard of care or SOC). The preliminary results of some early experiments indicate that this new drug combination can result in Sustained Viral Response (SVR) or, basically clearing the virus from you system, at rates slightly over 70%. The standard therapy has an SVR of 43%. It seems like a worthwhile experiment to get in on.
There is a 20% chance I will be getting a placebo which means I will be getting the SOC and some sugar pills. That means I have a 4-1 shot at getting the drug, which is a risk I think is acceptable. I start treatment tomorrow and the following are some notes about how I feel.

Friday the 18th and I’ll be starting treatment.

They will be teaching me how to inject myself with the interferon and what the timing and sequence of the oral drugs will be. There is also a diary I have to keep detailing dosage times and any and all side effect events. I have no idea what to expect. They told me to bring 2 Tylenol, a chilled urine sample and something to eat, as the pills have to be taken with food. One of the nurses called today to remind me what to bring and when I mentioned that I had forgotten about the Tylenol, he said the Tylenol are very important as I will find out; not the best sign.

Despite the fact that they have told me that this is going to make me feel like crap much of the time; that one of the guys who posted to the biker Hep C site Hep C Straight Up said that doing the treatment was harder for him than doing time in prison and that my wife’s friend who is now in his SECOND go at treatment calls the interferon “flu in bottle,” I still am not sure what I am in for.

I don’t think I am afraid, exactly. I am nervous, anxious, have sort of a feeling of dread, but also a feeling of anticipation to get on with it. Flu-like symptoms are not something I deal with well, especially nausea so in that sense I am genuinely dreading getting underway. I know the initial symptoms can be harsh and I am also afraid I won’t be tough enough to deal with it. On the other hand, you have to be treated eventually at some level and I am only going to get older and perhaps more sick the longer I wait.

I am not sure if I should eat before I go in or not as the call came in today while I was dealing with one of my volunteers at work and I was distracted enough not to ask and I can’t remember anything anymore and so forgot to call back and ask.
Is the injection like insulin given in the fat or in the muscle? How much is injected, how much pain is associated with the shot. I am assuming some sort of pain or why the “important” Tylenol. Do the pills immediately make you sick? I am not sure of any of this and even if they tried to tell me, the symptoms and intensity vary a lot from person to person, so I might be wish-you-were-dead miserable or merely feeling like crap.

The oracles indicate that this is something that will be to the good in the long run, but the short term could be a bitch.

I feel blank. Not terrified, not foolishly optimistic, not blithely going in to it without any sense of its seriousness, just sort of wait and see. I’m sure I don’t understand how tough it is going to be. I have endured pain before and long-term discomfort involving back and foot and shoulder pain but not necessarily long term queasiness and long-term lack of energy and long-term achiness and soreness and exhaustion and that sort of thing. I know I have to do it, I know others have done it, but I am not “looking forward to it” in any anticipatory way.

What is it going to mean for my sculpture? Will I have enough energy to work at my studio at all? Will I lose my studio because I can’t afford it anymore? Will I lose the desire to do sculpture at all? Will I just feel too sick to care?

I’m scared, but I think the inevitability of the process means that the fear moves a bit into the background. I have to do it, therefore I will and it doesn’t matter how scared I am, I just have to go ahead. At least once I’m in to it, I’ll know how bad it will be and how difficult the next 6 or 12 months are going to be. I do feel that I’m getting the right drug and that it is going to ramp up my resistance and beat the virus. I feel that it is the right thing to be doing and that this is the right time to do it. I hope that helps. Maybe I can keep rereading that after I puke and convince myself that this is all a good idea.

I also feel it can’t hurt. Even if it doesn’t cure it, it has to knock it back some and buy more time for further developments. But that’s a fallback. The belief is that it will work and the result will be worth the cost.
Hope I can sleep tonight…