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More "Life After Treatment"
Thanks DragonSlayer!
I think these kind of stories are important.
I would like to post another story. I am a 52 y.o. male who got "lucky" as I was found to have the Hep C antibody on a pre-employment screen in April of 08. Who knows how long I have had this, but I would suspect in excess of 25 years. I am almost never sick, and never realized I had this virus. I am in the healthcare field, but my whole career has been in the cardiac surgery arena, and I have to tell you, I was totally ignorant of HCV. I went thru the "Panic", "Shock", "denial" and "I am screwed" phases, just like most other people.After going through all of the normal tests, genotype 1a, VL 18 million, AST 62, ALT 90, High Fe and Ferritin, Ultrasound, and liver biopsy (inflamation 1-2, fibrosis 2-3), I sat down with my doctor, and discussed everything with her. First thing she said is that you do not need to make any choices right away. We needed to treat the high Fe first, prior to HCV treatment. She gave me the option to try dietary restrictions first. I eat cereal everyday, and did not realize how much iron is added. I cut out red meat, and read labels of everything I bought. After 4 months of this, there was very little impact on my Fe level, but at least I tried. The next step was to do therapeutic phlebotomies. I "deposited" 600cc of blood at the blood bank every two weeks for a total of 4 times. This got my Fe levels to where they needed to be. Thank god, for I thought she was going to recommend leeches next.
The whole time this was going one, I, like the rest of you, was doing everything to educate myself. I read everything I could, and lurked alot on this website. I researched trials, for I too, did not like the odds of a 40-45% probability of success. With a VL > 800K, some research showed that it was more like 38%. The only thing in my odds, was that I was not Hispanic or Afro-American, as evidence shows, they have even a lower success rate.
In November 08, we made a decision to start SOC treatment in Janurary of 09 if a trial I liked did not become available by then. We did find one, and on Dec, 23 08, I got screened to get into the ILLUMINATE trial for Telaprevir. That was the best Christmas Gift I ever received. Even better than my "Red Flyer". I liked this trial, for the fact that at the time the SVR rate was ~64% for enrollees of previous trials involving Telaprevir, and that everyone got the protease inhibitor. I started the treatment on Jan 8, 09.
I went in with a very positive attitude, though extremely anxious of the unknown. My Dr. advised me to stay off of the internet, for the majority of the people writing, are the ones who had the most difficulty. She told me that she would get me through the treatment. As you can tell, I did not totally listen to her, but her advise was good. I looked at a lot of sights, and I did determine that this sight for the most part stayed very positive, and relayed good information. CUDDOS TO ALL OF YOU REGULAR POSTERS HERE!!!!
I would define my 48 weeks of treatment as "normal". I had most of the side effects, (anemia, neutropenia, rash, loss of appetite, metallic taste, shortness of breath, mouth sores, thrombocytopenia, dry eyes, blurry eyes, cough, cough, cough, fatigue, chemo brain, insomnia, chills, body aches, agitation, etc, etc), but I was lucky in that none of these were in the severe range. I did have to do an INF dose reduction due to neutropenia for 8 weeks, and treated for pneumonia and an eye sty, but other than that, all went pretty well. Keep in mind though, that all of this is relative, and I would not wish this treatment on anyone.
I was able to do regular exercise up until week 34, and then I hit the wall. Most of my last 14 were pretty much work, go home and sleep. I was able to work throughout my treatment though.
I limped to the finish line on Dec 10, 09, and now am 8 weeks post EOT. I have been working out solidily for the past 6 weeks, and am now doing 45 min of aerobic activity 6 days a week, and lifting 3 days a week. My energy level has returned to normal, and my bloodwork is following the same pathway. My 4 week EOT showed UND.
This was a long year in my life, but the support of my medical team, my family, my coworkers, my employer, and my friends eased my burden. It is doable, and you can make it through it.
During the treatment, I said that I thought that I would never treat again. Now, after 8 weeks on the other side, if I am to relapse, I would sit down with my doctor, and look at my options with her.
I want to echo DragonSlayer's thoughts that it is very important for "newbies" on this list to hear that success is out there waiting, and that although not fun, it is possible, and even probable, to reach the finish line.
I hope this letter makes someone elses journey easier.
Larry
I think these kind of stories are important.
I would like to post another story. I am a 52 y.o. male who got "lucky" as I was found to have the Hep C antibody on a pre-employment screen in April of 08. Who knows how long I have had this, but I would suspect in excess of 25 years. I am almost never sick, and never realized I had this virus. I am in the healthcare field, but my whole career has been in the cardiac surgery arena, and I have to tell you, I was totally ignorant of HCV. I went thru the "Panic", "Shock", "denial" and "I am screwed" phases, just like most other people.After going through all of the normal tests, genotype 1a, VL 18 million, AST 62, ALT 90, High Fe and Ferritin, Ultrasound, and liver biopsy (inflamation 1-2, fibrosis 2-3), I sat down with my doctor, and discussed everything with her. First thing she said is that you do not need to make any choices right away. We needed to treat the high Fe first, prior to HCV treatment. She gave me the option to try dietary restrictions first. I eat cereal everyday, and did not realize how much iron is added. I cut out red meat, and read labels of everything I bought. After 4 months of this, there was very little impact on my Fe level, but at least I tried. The next step was to do therapeutic phlebotomies. I "deposited" 600cc of blood at the blood bank every two weeks for a total of 4 times. This got my Fe levels to where they needed to be. Thank god, for I thought she was going to recommend leeches next.
The whole time this was going one, I, like the rest of you, was doing everything to educate myself. I read everything I could, and lurked alot on this website. I researched trials, for I too, did not like the odds of a 40-45% probability of success. With a VL > 800K, some research showed that it was more like 38%. The only thing in my odds, was that I was not Hispanic or Afro-American, as evidence shows, they have even a lower success rate.
In November 08, we made a decision to start SOC treatment in Janurary of 09 if a trial I liked did not become available by then. We did find one, and on Dec, 23 08, I got screened to get into the ILLUMINATE trial for Telaprevir. That was the best Christmas Gift I ever received. Even better than my "Red Flyer". I liked this trial, for the fact that at the time the SVR rate was ~64% for enrollees of previous trials involving Telaprevir, and that everyone got the protease inhibitor. I started the treatment on Jan 8, 09.
I went in with a very positive attitude, though extremely anxious of the unknown. My Dr. advised me to stay off of the internet, for the majority of the people writing, are the ones who had the most difficulty. She told me that she would get me through the treatment. As you can tell, I did not totally listen to her, but her advise was good. I looked at a lot of sights, and I did determine that this sight for the most part stayed very positive, and relayed good information. CUDDOS TO ALL OF YOU REGULAR POSTERS HERE!!!!
I would define my 48 weeks of treatment as "normal". I had most of the side effects, (anemia, neutropenia, rash, loss of appetite, metallic taste, shortness of breath, mouth sores, thrombocytopenia, dry eyes, blurry eyes, cough, cough, cough, fatigue, chemo brain, insomnia, chills, body aches, agitation, etc, etc), but I was lucky in that none of these were in the severe range. I did have to do an INF dose reduction due to neutropenia for 8 weeks, and treated for pneumonia and an eye sty, but other than that, all went pretty well. Keep in mind though, that all of this is relative, and I would not wish this treatment on anyone.
I was able to do regular exercise up until week 34, and then I hit the wall. Most of my last 14 were pretty much work, go home and sleep. I was able to work throughout my treatment though.
I limped to the finish line on Dec 10, 09, and now am 8 weeks post EOT. I have been working out solidily for the past 6 weeks, and am now doing 45 min of aerobic activity 6 days a week, and lifting 3 days a week. My energy level has returned to normal, and my bloodwork is following the same pathway. My 4 week EOT showed UND.
This was a long year in my life, but the support of my medical team, my family, my coworkers, my employer, and my friends eased my burden. It is doable, and you can make it through it.
During the treatment, I said that I thought that I would never treat again. Now, after 8 weeks on the other side, if I am to relapse, I would sit down with my doctor, and look at my options with her.
I want to echo DragonSlayer's thoughts that it is very important for "newbies" on this list to hear that success is out there waiting, and that although not fun, it is possible, and even probable, to reach the finish line.
I hope this letter makes someone elses journey easier.
Larry
Good description. I think the stages are:1) Shock, 2) Denial 3) Panic and 4) I am Screwed. I skipped denial, since I had acute HCV when a teenager, but it did not lessen the shock, panic or feeling of hopelessness one bit. Glad it's over now and I (we) will never have to seriously think about it again.
I am now 4 weeks off treatment. (3rd time) Feeling better each day. Have been going to the gym, up to 7 minutes on the eliptical, gone from 70 to 150 pounds on the bench press, etc. Life does get better. Brain fog almost gone, no left over sides at all. After my second round of treatment, I ran a half marathon. Finished treatment in June and ran the White Rock half that following Novemeber.
Your story is very encouraging as was DragonSlayers. Thanks for keeping it real.
Diamond_Lil
Diamond_Lil
I just wrote back to Dragonslayer and now to you, to say thank you.
I am almost done but mentally wiped out from all this. I ran a 5k last year and everyone keeps asking me if i am doing it again ( in a couple of weeks) I try not to rip their heads off like they're idiots for asking, but I would do anything to get off my bed, out of my house and RUN. I am tired of being sick and tired. Because I am a little depressed i am beginning to wonder if i 'll make it to SVR and at this point never want to do this again.
You and DS timing is really good for me. Not that many posts I read tell me that there life at the end. I know because who wants to come back after they are done? Thanks to all of you that do stick around. Thanks so much.
I was kinda hoping I could start working out that soon, I am glad that you were able to. Plus, I'm 10 years younger than you---Ha!
From one person you encouraged today.
Thank you,
Vic
I am almost done but mentally wiped out from all this. I ran a 5k last year and everyone keeps asking me if i am doing it again ( in a couple of weeks) I try not to rip their heads off like they're idiots for asking, but I would do anything to get off my bed, out of my house and RUN. I am tired of being sick and tired. Because I am a little depressed i am beginning to wonder if i 'll make it to SVR and at this point never want to do this again.
You and DS timing is really good for me. Not that many posts I read tell me that there life at the end. I know because who wants to come back after they are done? Thanks to all of you that do stick around. Thanks so much.
I was kinda hoping I could start working out that soon, I am glad that you were able to. Plus, I'm 10 years younger than you---Ha!
From one person you encouraged today.
Thank you,
Vic
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