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ALTERNATIVE Treatments if NO SVR after TX
Well I saw my doofus doctor today (told me he's NEVER had anybody before who had NO fever or body aches during tx - I was a bit surprised) but I might be anemic now so did the blood work.
Anyways I asked him what we would do if I was not responding. HE said we would NOT base it on the 4wk PCR (which I had to beg for) - we would not get all suicidal but continue onwards. Duh.
SO I said what if I am not responding at 24wks. What will we try next?
He said nothing. That would be IT.
I said wait I know a lot of people who continued onwards...
So here is my question which I think might be useful for others later too just in case:
What are the next treatment regimens that others have been put on if they did not respond to the first tx?
this way I can begin to have my argument completely ready - otherwise I will find a new doctor who will agree with the next phase.
He told me the only thing he would try is to find a trial = protocol or something I didn't understand.
I need all the ammunition I can get and all the proof that longer/new whatever treatments DO LEAD TO SVR.
Just in case!
Thanks,Debby
Anyways I asked him what we would do if I was not responding. HE said we would NOT base it on the 4wk PCR (which I had to beg for) - we would not get all suicidal but continue onwards. Duh.
SO I said what if I am not responding at 24wks. What will we try next?
He said nothing. That would be IT.
I said wait I know a lot of people who continued onwards...
So here is my question which I think might be useful for others later too just in case:
What are the next treatment regimens that others have been put on if they did not respond to the first tx?
this way I can begin to have my argument completely ready - otherwise I will find a new doctor who will agree with the next phase.
He told me the only thing he would try is to find a trial = protocol or something I didn't understand.
I need all the ammunition I can get and all the proof that longer/new whatever treatments DO LEAD TO SVR.
Just in case!
Thanks,Debby
Thanks, friole, for your great comments. Not to worry, I may beyoch, moan and groan, but I'm in this thing until it is ALL GONE BYE BYE. It will not beat me. It may defeat me a few minutes here and there, but it will not beat me.
Thanks to folks like you, I take heart each time I read this board.
God bless each of you!!! And especially friole, for taking the time to encourage.
Thanks to folks like you, I take heart each time I read this board.
God bless each of you!!! And especially friole, for taking the time to encourage.
I'm new here. When you refer to stages or staging what exactly is that. I'm HCV Genotype 1 b.
When we refer to stages, we are talking about the degree of liver damage. Most of us are on the scale of 0-4, with 0 being no fibrosis and 4 being cirrohsis. I believe Jim gave you the address to the Janis site, they go into it in much greater detail.
Some of the other codes we use here that might be helpful: tx - treatment, sx - side effects, vl - viral load, bx - biopsy, for example 14/48 would mean I am in week 14 of 48 weeks of treatment, pcr is the test given to find out viral load, svr - sustained viral response, there's more I can't think of right now.
Good Luck to you, you will find alot of good info and support here; keep coming back. Peace
Some of the other codes we use here that might be helpful: tx - treatment, sx - side effects, vl - viral load, bx - biopsy, for example 14/48 would mean I am in week 14 of 48 weeks of treatment, pcr is the test given to find out viral load, svr - sustained viral response, there's more I can't think of right now.
Good Luck to you, you will find alot of good info and support here; keep coming back. Peace
If I remember correctly you are going #4 this weekend and then you'll be getting the PCR next week? These weeks are tough to get through even if SX aren't bad - an I'm glad for you they aren't. But the effects can be cumulative over time, so you're not out of the woods yet.
It's great that you are doing the research and covering your bases. The progress in your upcoming PCR will give you an idea about your progress.
Depending on where you are in NY there is a sea of Drs. So if you need to off Dr. Doofus - there are others. Give TX a litlle more time, results will help you work out next steps along with the insight you get from the folks here.
It's great that you are doing the research and covering your bases. The progress in your upcoming PCR will give you an idea about your progress.
Depending on where you are in NY there is a sea of Drs. So if you need to off Dr. Doofus - there are others. Give TX a litlle more time, results will help you work out next steps along with the insight you get from the folks here.
Oh no dont even worry about me thinking for REAL that I am not going to achieve SVR. I've got my heart set on that!
I did want to know what his usual routine in case someone DOESNT and I was a bit taken a back that he was like nothing.
Realisitcally I just want to be appraised of ALL of the realities of it. I mean I expect to get SVR but what if I did relapse? What would be his course. You see I have NO INTENTION OF EVER GIVING UP. He apparently DOES. THAT made me mad.
I know a lot ofpeople in here who have done more than 48wks and then achieved SVR. He wont even hear of it. What sense does that make?
Imagine someone told Cuteus at 48 weeks = well too bad nothing else I am going to do? Yuck!
I just like to be armed in all areas cause I do NOT think this is the most aggressive guy out there.
That's all.
I'm still standing on Psalm 37:5. That was the best one posted for me.
Commit everything you do to the Lord, trust Him to help you do it, and HE WILL. AH thanks God!
I did want to know what his usual routine in case someone DOESNT and I was a bit taken a back that he was like nothing.
Realisitcally I just want to be appraised of ALL of the realities of it. I mean I expect to get SVR but what if I did relapse? What would be his course. You see I have NO INTENTION OF EVER GIVING UP. He apparently DOES. THAT made me mad.
I know a lot ofpeople in here who have done more than 48wks and then achieved SVR. He wont even hear of it. What sense does that make?
Imagine someone told Cuteus at 48 weeks = well too bad nothing else I am going to do? Yuck!
I just like to be armed in all areas cause I do NOT think this is the most aggressive guy out there.
That's all.
I'm still standing on Psalm 37:5. That was the best one posted for me.
Commit everything you do to the Lord, trust Him to help you do it, and HE WILL. AH thanks God!
Debby:
I know this is easy for me to say and hard for you to do, but; I am also a worrier, sometimes I worry about things so bad I make myself sick...I was almost "insane" when I found out I have HCV and for 2 solid months was so consumed with dying I forgot about living, now how silly was that!
I think if you can find an "out" from it you will be better mentally and if you are better mentally you may feel better physically...Maybe get away from this forum for awhile, sometimes I do that, when I start getting crazed with all the stories of the severe sx's...
The very first impression I had of you was "what a little scrapper"...Your fight will win this thing, don't sweat the stuff that hasen't even happened yet...You have a low viral load, that's in your favor for SVR...
Keep your chin up kiddo and remember "New Yorkers survived 911, how tough can this dragon be to slay"...
Best wishes
Beth *smile and hug*
I know this is easy for me to say and hard for you to do, but; I am also a worrier, sometimes I worry about things so bad I make myself sick...I was almost "insane" when I found out I have HCV and for 2 solid months was so consumed with dying I forgot about living, now how silly was that!
I think if you can find an "out" from it you will be better mentally and if you are better mentally you may feel better physically...Maybe get away from this forum for awhile, sometimes I do that, when I start getting crazed with all the stories of the severe sx's...
The very first impression I had of you was "what a little scrapper"...Your fight will win this thing, don't sweat the stuff that hasen't even happened yet...You have a low viral load, that's in your favor for SVR...
Keep your chin up kiddo and remember "New Yorkers survived 911, how tough can this dragon be to slay"...
Best wishes
Beth *smile and hug*
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