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Hep C Discussion Forum -> On Treatment -> Just Got the Word - Extending to 36 Weeks
Post Info TOPIC: Just Got the Word - Extending to 36 Weeks
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RE: Just Got the Word - Extending to 36 Weeks
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My CRNP said that reducing the ribavirin during the latter half of treatment is fast becoming the standard of care across the country, with no noticable change in the outcome. This is good news for a lot of folks, me included, because I think the riba is the culprit where anemia is concerned. Perhaps much less procrit would be needed. One less shot a week is always a good thing. She did not say that extending treatment for 12 more weeks automatically goes along with that. I think the extension is purely based on the fact that I was not UND at 4 wks. But I have an appointment this morning to talk about all of this. If anything new comes along I'll share it with all of you.



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
LanaiSurferGirl


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Alan...i will probably have to extend too.  I have been so anemic and this is the 5th week of altered ribavirin schedule.  Like you, I don't mind putting in some extra weeks if it means getting rid of this thing for good.....better to do it now rather than have to repeat it later.

Awesome that you are staying so active and keeping up with your grandson :)

aloha,

Meghan



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
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I think being as active as possible before and during treatment, and having the good sense to make adjustments when necessary, as well as bringing a bottle of good drinking water with you everywhere you go can reduce the impact of treatment on the body and soul. I just walked in the door from a trip to Massanutten, VA with my kid's Scout Troop, where we hit the slopes from open to close for two straight days. I had to take frequent breaks, had a bottle of Deer Park in both hip pockets of my jacket, and tried to "graze" for food pretty much all day. But I bet I made twenty runs, mostly on the diamonds, and had more fun than I thought would be possible. And yes, today every cell in my body is sore. But that just covers up the lingering itch, and gives me an excuse to move slowly. Now for an afternoon of relaxing TV before the 14th Pegasys shot this evening.

My best to each of you, and wishes for good labs and mellow side effects.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
ordinary


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Alan, Mike: You are both so supportive. Before this treatment, I ran, swam and walked a lot. I have a feeling that a more active lifestyle might be the way to go. Will give it a try.

Thanks,

ordinary (not)

alan, sorry to hijack your thread.



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ordinary

Third round of treatment. Started with telprevir and peg/riba in August 2011. UND after 2 weeks. Stopped telaprevir in Sept. due to rash. Continued peg & riba with addition of boceprevir. Did 48 weeks. TX ended July11th. Labs UND as of August.
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JW, I agree where 'ordinary' is concerned. To slog through the day for 27 weeks is anything but ordinary. In fact, we are all heroes in our own way. This is not an easy protocol.

Ordinary,  my hat is off to you.  I have had my doubts. But my situation is very abnormal. I have been raising my grandson since he was 3 months old. He is 14 years old now. So going in, I was in a little better shape than a lot of 60-year olds. I have a black belt in Taekwondo. I am a long haul cyclist, whitewater conoeist and kayaker, a hiker and snowboarder. All of this is Adam's fault. I have told him many times in the past twelve weeks how thankful I am that he has kept me so active. It has really helped me to survive this treatment so far, to the extent that I feel guilty when I complain. Many of us have had a much tougher go of it.

I am just so thankful for the support of my family, my co-workers, and the good folks in this forum. It would be even tougher to have to go it alone.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
jwmaher


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Anyone who can tolerate this for as long as you have is not ordinary.  I would say you're extraordinary.

Mike



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ordinary


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Alan,
I'm sorry to hear that they have extended your treatment. I'm on week 27 of 48. Most of the time I just slog through the day and don't think about the end of treatment. But then my 88 yr. old mother asks how I got 2 black eyes and I realize that I am not normal.
You sound very brave. Don't you ever have any doubts?
ordinary

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ordinary

Third round of treatment. Started with telprevir and peg/riba in August 2011. UND after 2 weeks. Stopped telaprevir in Sept. due to rash. Continued peg & riba with addition of boceprevir. Did 48 weeks. TX ended July11th. Labs UND as of August.
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The CRNP just called to say since I was not UND at 4 weeks they have decided to extend the total regimen to 36 weeks. So I am not half way through. I am one-third of the way through. She was very apologetic, but I told her I had seen similar treatment schedules in the forum, and I was not surprised. Of course, no more Incivek. Just 12 additional weeks of Pegasys/Ribavirin. I can do that. Still UND at 12 weeks, so it is hard to complain.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
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