Caroline's Story

My Journeywith Hep C By Caroline Flag, Boulder CO -- I was diagnosed with Hep C in 1999. Like many others with Hep C, I changed my lifestyle dramatically, my diet for the better, drank extra water, exercised routinely, and took herbal supplements. I didn’t feel too bad physically other than a little fatigue and forgetfulness. I later began to need naps, had liver pain, and struggled with itching & insomnia. My Hep C “profile” demanded I consider combo treatment. I am a genotype 1a with a high viral load and bridging fibrosis. I was 47 years old at that time. I guessed I had Hep C for probably 25+ years. Three years ago, as I did my own person research, I reviewed my options and chose Pegasys combo because it had a slightly better published SVR (sustained viral response after 6 months post treatment) rate, 53%. Better than the flip of a coin! I would suggest everyone preparing for treatment, should talk with their physician and study current data available. PEG - Intron was very close behind at about 50%. I studied the side effects and was well aware I should expect flu like symptoms. I began taking anti-depressants (just in case). I began Pegasys combo treatment and joined 2 support groups. One group was in person the other online. After 12 weeks of Pegasys my viral load was in the hundreds. I thought this was great progress! I was 4 log down in viral load, 2 log down is considered excellent! After 24 weeks of Pegasys I was clear of the Hep C virus. I was sure I was going to be in the “cleared cured” group at the end of treatment, all I had to do was make it to the 48 week finish line. At this point I was also taking both Nuepogen and Procrit (to increase both white & red blood cells), Ativan (anxiety & panic attacks), Restoril (sleep), Compazine (nausea), and Vicodin (pain). I was cycling in and out of panic attacks, I was literally falling down and walking into furniture, covered in bruises. I quadrupled my anti-depressants. I was determined to complete the 48 weeks of Pegasys. I learned in my support groups I was not the only one suffering all the Shering and Roche claimed side effects but many more! Everyone I spoke with on PEG treatment seemed to be experiencing the same extreme depression, lack of awareness, mental craziness, nervous anxiousness, and even suicidal thoughts. I called Peg-assist (a Roche Pegasys sponsored support line) a few times. They routinely suggested I should drink more water. I never shared my suicidal thoughts with doctors or nurses, as a friend was taken off treatment for sharing her similar ideations. I crashed my car without any memory of even driving off the road. I cried for days on end. But I made it! I finished 48 full weeks of Pegasys. I tested negative for the Hep C virus. It was worth it! I was told my chances of making it to the 6 month SVR cured point were 80%. One week (that’s right, week, not month) later I went back to get my HCV Quant retested and what do you know, “IT” was back, I relapsed. Ten weeks later my viral load was 17+ million, my ALTs 900+. I plunged into depression and disbelief. My specialist, Dr. Greg Everson, Director of Hepatology, Denver University Hospital, gave me two options: Do nothing and wait, or do InterMuneInfergen. I was vaguely familiar with InterMune Infergen at this point. I was informed that because my body was “exposed” to combo treatment already, my chance to clear the virus was diminished, how much no one knows. I chose to do Infergen, another 48 weeks of combo treatment. I trust Dr. Everson and his staff implicitly. InterMune combo treatment is a daily Infergen injection with a higher weightbased dose of Ribavirin. Infergen combo treatment is different than either PEG, meant for PEG relapsers or non-responders. The 48 weeks Infergen treatment was much like the PEG treatment in terms of side effects except harder. The higher dose of Ribavirin was difficult to tolerate. I kept throttling on & off it due to hives, rashes & itching. I found Lidocaine cream to be a miracle solution for this problem. I also experienced the combo crazy makers (my term for hearing & seeing things with no awareness of surroundings or reality) to a more severe degree. When on PEG I read books voraciously, on Infergen I could only read the daily paper & watch CNN Headline News. I worked very part time as I was able, mostly from home. My comprehension and memory were shot. I don’t know how much of my experience was due to Infergen alone, or ongoing effects of PEG and not having recovered from PEG when I started Infergen. I crashed another car! I am now 8+ months post Infergen treatment and remain clear of the Hep C virus, I’m declared CURED! My feelings of elation and joy are indescribable. My loved ones cried with the news, I grinned from ear to ear. I really did it! In retrospect, Infergen was a more difficult treatment than PEG, but PEG is simply too weak for most of us. I wondered if I would ever regain my faculties and the physical strength I had previously. I am now (age 50) 90% recovered from all the side effects I experienced in my 3+ years of treatments and recovery. I am walking 2 miles a day and just joined a gym. I’m working full time and traveling extensively again. I did it for the same reason anyone does it: More than anything in the world, I want a healthy, happy, excellent quality of life for the rest of it, especially in my golden years. I feel better now than I have for as long as I can remember. I had no idea how sick I really was with Hep C before treatment. If Infergen were available as a first round of treatment, my advice to you all considering treatment would be to consider Infergen as a first course of combo treatment. It would be my first choice treatment for the “hard nuts to crack”, like me. Or consider Infergen as a second course. Bigger problem, bigger hammer. I wish I’d had the Infergen option as a first course. Its hard to complete one course much less two. Apparently your chances to clear the virus will be higher the sooner you go on Infergen after PEG, but I found there must be some recovery time between treatments. Why do 2 courses when you could do only 1?You must have the strength, fortitude, commitment and perseverance to finish treatment. You can’t win if you don’t finish, commit to finishing NO MATTER WHAT! Gather your strength and support beginning months before you begin treatment. Become as strong, healthy, and positive as you possibly can. You’ll need all the reserves and support you can muster. I would take Infergen in 12 week segments and make a personal decision at each 3 month mark. If not clear at 12 weeks, quit or take another 12 weeks. When clear, do 36 more weeks of Infergen. If not clear at 24 weeks, quit. The most you have to endure then is 24 weeks of treatment. There is definitely a recovery period at the end of treatment so be sure to factor that into your schedule. Most ideally you will need (this is a huge wish list - I didn’t have it all):1) Gastroenterologist or Hepatologist to manage your Infergen treatment (thank you InterMune & Dr. Everson) 2) General practitioner to manage your side effects (thank you Dr. Maiocco) 3) Support (group, partner, family, friends, rabbi, minister - thank you Fiona & Reb Nadya) 4) Flexible work schedule or company paid disability benefits (thank you to my employer)5) Money for co-pays, scripts, tests, doctor appointments, health insurance & other monthly ongoing bills (thanks again Fiona, my employer & low interest credit cards) 6) Courage, tenacity, and most of all a personal commitment to finishing treatment (remember, you can’t win if you don’t finish - thanks to ME for doing a great job! I finished - I WON!)

My Journeywith Hep C

By Caroline Flag, Boulder CO -- I was diagnosed with Hep C in 1999. Like many others with Hep C, I changed my lifestyle dramatically, my diet for the better, drank extra water, exercised routinely, and took herbal supplements. I didn’t feel too bad physically other than a little fatigue and forgetfulness. I later began to need naps, had liver pain, and struggled with itching & insomnia. My Hep C “profile” demanded I consider combo treatment. I am a genotype 1a with a high viral load and bridging fibrosis. I was 47 years old at that time. I guessed I had Hep C for probably 25+ years. Three years ago, as I did my own person research, I reviewed my options and chose Pegasys combo because it had a slightly better published SVR (sustained viral response after 6 months post treatment) rate, 53%. Better than the flip of a coin! I would suggest everyone preparing for treatment, should talk with their physician and study current data available. PEG - Intron was very close behind at about 50%. I studied the side effects and was well aware I should expect flu like symptoms. I began taking anti-depressants (just in case). I began Pegasys combo treatment and joined 2 support groups. One group was in person the other online. After 12 weeks of Pegasys my viral load was in the hundreds. I thought this was great progress! I was 4 log down in viral load, 2 log down is considered excellent! After 24 weeks of Pegasys I was clear of the Hep C virus. I was sure I was going to be in the “cleared cured” group at the end of treatment, all I had to do was make it to the 48 week finish line. At this point I was also taking both Nuepogen and Procrit (to increase both white & red blood cells), Ativan (anxiety & panic attacks), Restoril (sleep), Compazine (nausea), and Vicodin (pain). I was cycling in and out of panic attacks, I was literally falling down and walking into furniture, covered in bruises. I quadrupled my anti-depressants. I was determined to complete the 48 weeks of Pegasys. I learned in my support groups I was not the only one suffering all the Shering and Roche claimed side effects but many more! Everyone I spoke with on PEG treatment seemed to be experiencing the same extreme depression, lack of awareness, mental craziness, nervous anxiousness, and even suicidal thoughts. I called Peg-assist (a Roche Pegasys sponsored support line) a few times. They routinely suggested I should drink more water. I never shared my suicidal thoughts with doctors or nurses, as a friend was taken off treatment for sharing her similar ideations. I crashed my car without any memory of even driving off the road. I cried for days on end. But I made it! I finished 48 full weeks of Pegasys. I tested negative for the Hep C virus. It was worth it! I was told my chances of making it to the 6 month SVR cured point were 80%. One week (that’s right, week, not month) later I went back to get my HCV Quant retested and what do you know, “IT” was back, I relapsed. Ten weeks later my viral load was 17+ million, my ALTs 900+. I plunged into depression and disbelief. My specialist, Dr. Greg Everson, Director of Hepatology, Denver University Hospital, gave me two options: Do nothing and wait, or do InterMuneInfergen. I was vaguely familiar with InterMune Infergen at this point. I was informed that because my body was “exposed” to combo treatment already, my chance to clear the virus was diminished, how much no one knows. I chose to do Infergen, another 48 weeks of combo treatment. I trust Dr. Everson and his staff implicitly. InterMune combo treatment is a daily Infergen injection with a higher weightbased dose of Ribavirin. Infergen combo treatment is different than either PEG, meant for PEG relapsers or non-responders. The 48 weeks Infergen treatment was much like the PEG treatment in terms of side effects except harder. The higher dose of Ribavirin was difficult to tolerate. I kept throttling on & off it due to hives, rashes & itching. I found Lidocaine cream to be a miracle solution for this problem. I also experienced the combo crazy makers (my term for hearing & seeing things with no awareness of surroundings or reality) to a more severe degree. When on PEG I read books voraciously, on Infergen I could only read the daily paper & watch CNN Headline News. I worked very part time as I was able, mostly from home. My comprehension and memory were shot. I don’t know how much of my experience was due to Infergen alone, or ongoing effects of PEG and not having recovered from PEG when I started Infergen. I crashed another car! I am now 8+ months post Infergen treatment and remain clear of the Hep C virus, I’m declared CURED! My feelings of elation and joy are indescribable. My loved ones cried with the news, I grinned from ear to ear. I really did it! In retrospect, Infergen was a more difficult treatment than PEG, but PEG is simply too weak for most of us. I wondered if I would ever regain my faculties and the physical strength I had previously. I am now (age 50) 90% recovered from all the side effects I experienced in my 3+ years of treatments and recovery. I am walking 2 miles a day and just joined a gym. I’m working full time and traveling extensively again. I did it for the same reason anyone does it: More than anything in the world, I want a healthy, happy, excellent quality of life for the rest of it, especially in my golden years. I feel better now than I have for as long as I can remember. I had no idea how sick I really was with Hep C before treatment. If Infergen were available as a first round of treatment, my advice to you all considering treatment would be to consider Infergen as a first course of combo treatment. It would be my first choice treatment for the “hard nuts to crack”, like me. Or consider Infergen as a second course. Bigger problem, bigger hammer. I wish I’d had the Infergen option as a first course. Its hard to complete one course much less two. Apparently your chances to clear the virus will be higher the sooner you go on Infergen after PEG, but I found there must be some recovery time between treatments. Why do 2 courses when you could do only 1?You must have the strength, fortitude, commitment and perseverance to finish treatment. You can’t win if you don’t finish, commit to finishing NO MATTER WHAT! Gather your strength and support beginning months before you begin treatment. Become as strong, healthy, and positive as you possibly can. You’ll need all the reserves and support you can muster. I would take Infergen in 12 week segments and make a personal decision at each 3 month mark. If not clear at 12 weeks, quit or take another 12 weeks. When clear, do 36 more weeks of Infergen. If not clear at 24 weeks, quit. The most you have to endure then is 24 weeks of treatment. There is definitely a recovery period at the end of treatment so be sure to factor that into your schedule. Most ideally you will need (this is a huge wish list - I didn’t have it all):1) Gastroenterologist or Hepatologist to manage your Infergen treatment (thank you InterMune & Dr. Everson) 2) General practitioner to manage your side effects (thank you Dr. Maiocco) 3) Support (group, partner, family, friends, rabbi, minister - thank you Fiona & Reb Nadya) 4) Flexible work schedule or company paid disability benefits (thank you to my employer)5) Money for co-pays, scripts, tests, doctor appointments, health insurance & other monthly ongoing bills (thanks again Fiona, my employer & low interest credit cards) 6) Courage, tenacity, and most of all a personal commitment to finishing treatment (remember, you can’t win if you don’t finish - thanks to ME for doing a great job! I finished - I WON!)