Aa
SVR--One More for Team Blue
This is really a miracle!
Got the news today that I have SVR'd. Not sure if anyone remembers, but I went into the boceprevir trial naive. My first 4 week results were very uninspiring. I went from 1320K (at the beginning) to 940K (2 wks) to 629K (4wks) which is about a third of a log drop when I started the blue pills. From there I dropped through the floor to <25 but still detected--which means it was not quantifiable by the test but still there. I stayed at <25 DET for the next two tests and then finally went UND at week 10. I had a blip at week 24 where I tested <25 DET again but on a repeat test I was UND and have been ever since. I finished up last November and have been steadily feeling better. Almost all my blood counts are back to where they were when I started except that my cholesterol numbers are higher. Going to have to deal with that. But that's okay. :)
I had various sx during treatment, including almost immediate anemia when I started the blue pills. That combined with that unmistakable awful taste (and the VL drop) assurred me I was getting the real thing and not the placebo. I was re-randomized at week 28 and after that I was getting SOC and the placebo only.
Thanks to everyone here for your support. Thanks for the jokes. Thanks for posting studies. Thanks for all the first person accounts of handling the disease and handling the cure. I knew exactly what I was getting myself into when I started treating and that really helped. It wasn't as bad as I feared or as good as I hoped. The one thing I thought would happen for sure was I'd lose my thyroid and that didn't happen. I guess I thought it would because I have thyroid issues on both sides of the family. But somehow they skipped me!
The trial I participated in was administered through Cedars-Sinai in LA. They took marvelous care of me. I think the world of them. There is a 3 year follow-up and I plan on participating.
Got the news today that I have SVR'd. Not sure if anyone remembers, but I went into the boceprevir trial naive. My first 4 week results were very uninspiring. I went from 1320K (at the beginning) to 940K (2 wks) to 629K (4wks) which is about a third of a log drop when I started the blue pills. From there I dropped through the floor to <25 but still detected--which means it was not quantifiable by the test but still there. I stayed at <25 DET for the next two tests and then finally went UND at week 10. I had a blip at week 24 where I tested <25 DET again but on a repeat test I was UND and have been ever since. I finished up last November and have been steadily feeling better. Almost all my blood counts are back to where they were when I started except that my cholesterol numbers are higher. Going to have to deal with that. But that's okay. :)
I had various sx during treatment, including almost immediate anemia when I started the blue pills. That combined with that unmistakable awful taste (and the VL drop) assurred me I was getting the real thing and not the placebo. I was re-randomized at week 28 and after that I was getting SOC and the placebo only.
Thanks to everyone here for your support. Thanks for the jokes. Thanks for posting studies. Thanks for all the first person accounts of handling the disease and handling the cure. I knew exactly what I was getting myself into when I started treating and that really helped. It wasn't as bad as I feared or as good as I hoped. The one thing I thought would happen for sure was I'd lose my thyroid and that didn't happen. I guess I thought it would because I have thyroid issues on both sides of the family. But somehow they skipped me!
The trial I participated in was administered through Cedars-Sinai in LA. They took marvelous care of me. I think the world of them. There is a 3 year follow-up and I plan on participating.
Im so happy for you I have good tears!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! congratulatons to you.
Im so elated by this news!!!!!!!! You go Greatbird!! FLy high!!!! Fly high!!!!!
Yes!!!!!!!!!!
Best wishes, health happiness and love
CHARM
Im so elated by this news!!!!!!!! You go Greatbird!! FLy high!!!! Fly high!!!!!
Yes!!!!!!!!!!
Best wishes, health happiness and love
CHARM
I have been down for a few days, but hearing your good news has revived me and has given me reason to cheer!! I can't tell you how wonderful your news is to us that are in tx! You are an inspiration to me and I send you all my best for continued health and happiness as you pursue your dreams. Go live life to the fullest!!!
jaz
jaz
" I'm allowed to give out one piece of advice to those who choose to treat, I recommend you make sure you have a doctor who knows what they are doing, and that you are comfortable with their style of treatment and attentiveness. If you are dealing with a nurse or PA, then you must feel the same way about them. Treatment can be quite anxiety provoking all on its own. You need to feel your medical team is supporting you and you need to be comfortable with their knowledge and decisions."
Great Advice - And CONGRATULATIONS on your SVR!!!!!!!!!!!
Great Advice - And CONGRATULATIONS on your SVR!!!!!!!!!!!
I am about to start tx in a boce trial. I was diagnosed 11 years ago, and this will be my first tx. Your success is wonderful for you, and encouraging to us all. Go blue team!
I'm overwhelmed. With so many good wishes I should live to be well over 100. :)
Thank you so much--again--for being here with me, sharing your stories, your insights, your knowledge, and your hearts.
I *will* be getting on with my life. I will check back from time to time to see how every one is doing.
If I'm allowed to give out one piece of advice to those who choose to treat, I recommend you make sure you have a doctor who knows what they are doing, and that you are comfortable with their style of treatment and attentiveness. If you are dealing with a nurse or PA, then you must feel the same way about them. Treatment can be quite anxiety provoking all on its own. You need to feel your medical team is supporting you and you need to be comfortable with their knowledge and decisions.
Thank you so much--again--for being here with me, sharing your stories, your insights, your knowledge, and your hearts.
I *will* be getting on with my life. I will check back from time to time to see how every one is doing.
If I'm allowed to give out one piece of advice to those who choose to treat, I recommend you make sure you have a doctor who knows what they are doing, and that you are comfortable with their style of treatment and attentiveness. If you are dealing with a nurse or PA, then you must feel the same way about them. Treatment can be quite anxiety provoking all on its own. You need to feel your medical team is supporting you and you need to be comfortable with their knowledge and decisions.
That is awsome news. Very happy for you. Now get on with life and have a good one!!
That's really cool. I have a chance to do a trial soon. I sure want to get SVR. Its great to read where people do trial drugs and it works out.
Great, Great Bird,
I am also very happy for you, wanderfull news, Just Be happy, and Stay like this, ever after!
CONGRETULATIONS!
I am also very happy for you, wanderfull news, Just Be happy, and Stay like this, ever after!
CONGRETULATIONS!
That's Great News! So glad to hear that you are getting back into the swing of things... gives the rest of us hope for life after tx.
Have a wonderful life!
Have a wonderful life!
Congratulations and thanks for posting, especially your fascinating history of TX. Sure looks like your SVR can be clearly attributed to the boceprevir. I signed up for the 3 year follow-up, then had second thoughts because a P.A. on my study team was always an offensive idiot and I didn't think I could face her if I don't have to. I called back and requested not to see her ever again and they agreed, so I'll do follow-up, too. Why not? Will provide regular CBC's and may draw more attention to a side effect I had on boceprevir and get it on the label. So glad you are in the club.
I just wanted to congratulate you once again - even though I did yesterday it's not the same as having your name on the SVR thread. I still look at mine on occasion (printed it out of course).
I am just SO HAPPY FOR YOU!
I am just SO HAPPY FOR YOU!
Congratulations on your wonderful news!!!!!
I agree with willing - this is your best post ever!
Stay well,
Mike
I agree with willing - this is your best post ever!
Stay well,
Mike
Well done!! Well done!! and Very Well Done!!! Congrats GB - that's very awesome news.
Just great greatbird, quite a few of us started around the same time and the news has been fantastic so far.............. Enjoy
cando
cando
That is Awesome News!!! Thanks for posting, very encouraging, Can't wait to get started with either Boce or tele, and post my own SVR testimony:)
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