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Medical Forum / Diseases and Disorders / Hepatitis / August 2005New Numbers
My Doctors office called and they had the following stats for me. 1b geno, 66 ALT, 60 AST, liver biopsy mild stage 1 and viral load 562,000. Mentioned a study whereby you check your viral load at 12 weeks and if you show a SVR and at 24 weeks you show an SVR you take your meds for 48 weeks. If you do not show SVR at 12 or 24 you stay on tx for 1 yr and 6 months. This study is to look at slow responders. Your opinion please. Mags >My Doctors office called and they had the following stats for me. 1b geno, >66 ALT, 60 AST, liver biopsy mild stage 1 and viral load 562,000. [quoted text clipped - 7 lines] > >Mags With that low a biopsy score, and assuming there are no other HCV-related health issues extant, delaying treatment at this time would be a reasonable decision. But there's usually so much more at play than liver health alone. Consider the following: How old are you? What is your current Quality of Life? Do you have any other health issues that might be HCV-related? Have you noticed any changes in your overall health over the last five years? Is your mental state stable? Could you maintain 100% compliance with the therapy for a year - or worse, 18 months? Do you have a good support infrastructure (immediate family, close friends, hep c doctor, etc) to help through potential rough stretches? Do you have a health care program that would cover treatment now? Is there any risk that you won't have health care coverage in the future? Yup, it ain't easy for an F1 (it's usually *much* easier for an F2 to F4 to make this call than for an F1 ;-) Cheers - and best of luck whichever way you go. /greyhackles I would like to add one question to Grey's list. If you are employed, are your finances in good enough shape if you can't work? You posted a few weeks ago about being put on a study to receive tx, and having to go through more biopsies, could you elaborate? Sue Hi Sue. I have about a years paid sick leave in the bank and would probably qualify for disability if necessary. I prefer to try to work and keep my life as normal as possible. My medical plan would only cover 80% of the cost which I would be out of pocket close to $6,000. As part of this study I will get my drugs free. I go next Friday for a physical, blood work and protocol and will be starting my treatment within the next 2 - 3 weeks. I do not need another biopsy for this study - the Dr. had the info mixed up! This study is for geno type 1's to find out why they do not respond in 48 weeks. Mags >I would like to add one question to Grey's list. > If you are employed, are your finances in good enough shape if you can't > work? > You posted a few weeks ago about being put on a study to receive tx, and > having to go through more biopsies, could you elaborate? > Sue If it makes sense to do the treatment now then this sounds like a good way to do it. > Hi Sue. I have about a years paid sick leave in the bank and would probably > qualify for disability if necessary. I prefer to try to work and keep my [quoted text clipped - 13 lines] > > having to go through more biopsies, could you elaborate? > > Sue What are your symptoms? Did you say how old you were? Your numbers do not sound too bad. Larry's doctor felt with a 1 he could consider waiting, but then his doctor's pathologist found it to be between 1 and 2 and that alone, is why he treated. (we hope that's what the MD said, we only see the nurse). What I don't understand is how subject the analysis is to which pathologist looks at it. His BCLD (big chief liver doctor) said the test is not subjective and there is a a way to measure it, however, the MD made it sound like his guys did more analysis. I'm still wondering if it's all that quantifiable when you are looking at a slide. I'm afraid to give you any advice. I think I would not treat, but that depends on your general health and age... Wendy I am 52 yrs old, feel healthy although lately my joints have been aching especially my feet. The Hep was discovered during a physical. I work full time, go to the gym (just started back) 3 or 4 times a week and work full-time. Mags > What are your symptoms? Did you say how old you were? Your numbers do > not sound too bad. Larry's doctor felt with a 1 he could consider [quoted text clipped - 11 lines] > > Wendy Hi Mags, Admittedly you are on the fence as to treat or not. I have always heard that the SVR it easier to obtain if you have less damage (stage 1), also if it doesn't sit well with you and you cannot tolerate it just get off, its better to have tried than not to have try at all. Last but not least free drugs? Go for it, some people tolerate it fairly well. Kick that dragons butt just don't hurt yourself doing it. Buster >I am 52 yrs old, feel healthy although lately my joints have been aching >especially my feet. The Hep was discovered during a physical. I work full [quoted text clipped - 17 lines] >> >> Wendy What are your symptoms? Did you say how old you were? Your numbers do not sound too bad. Larry's doctor felt with a 1 he could consider waiting, but then his doctor's pathologist found it to be between 1 and 2 and that alone, is why he treated. (we hope that's what the MD said, we only see the nurse). What I don't understand is how subject the analysis is to which pathologist looks at it. His BCLD (big chief liver doctor) said the test is not subjective and there is a a way to measure it, however, the MD made it sound like his guys did more analysis. I'm still wondering if it's all that quantifiable when you are looking at a slide. I'm afraid to give you any advice. I think I would not treat, but that depends on your general health and age... Wendy I don't want to influence you in one direction or another. I'm sorry I'd written the other post now. What would have to occur, is you'd have to have a way of being tested every 3 - 6 months to see if the disease has progressed. And, althought some claim the Fibrosure (or Fibrospect) can do this non-invasively, others say the test is not that conclusive. If you can follow your disease to see if it progresses with ALT and AST that would work how, however, some people continue to have damage while levels do not increase. I don't want to advise you not to want to wipe out a virus. I'm sorry I'm on the fence with this - not enough knowledge. You don't want to have to repeat the biopsy, so I question how you would know if the disease progressed. And, as Larry's doctor said, with a 1 chances are you could die of something else first. Nothing makes much sense here. -Wendy I see being in a study as getting better care? They would be more interested in me, any comments. Mags >I don't want to influence you in one direction or another. I'm sorry > I'd written the other post now. What would have to occur, is you'd have [quoted text clipped - 9 lines] > said, with a 1 chances are you could die of something else first. > Nothing makes much sense here. -Wendy To be blunt, they lose one of their test subjects if you die or drop out and if they lose too many than the study has to start over. So they are certainly very interested in making sure neither of those happens. > I see being in a study as getting better care? They would be more > interested in me, any comments. [quoted text clipped - 13 lines] > > said, with a 1 chances are you could die of something else first. > > Nothing makes much sense here. -Wendy That's hardly the case!! You are nothing more than a guinea pig to the pharmaceutical company running the trial. All they are interested in is collecting data from your experience and they are hoping it's the kind that shines a favorable light on their brand of drugs. You would be better served by having a knowledgeable, caring doc or practitioner that isn't being told how they must treat you. Elmo ///////////// I see being in a study as getting better care? They would be more interested in me, any comments. Mags "Wendela" <shoegirl1@verizon.net> wrote in message news:1125362444.210312.14940@z14g2000cwz.googlegroups.com... I don't want to influence you in one direction or another. I'm sorry I'd written the other post now. What would have to occur, is you'd have to have a way of being tested every 3 - 6 months to see if the disease has progressed. And, althought some claim the Fibrosure (or Fibrospect) can do this non-invasively, others say the test is not that conclusive. If you can follow your disease to see if it progresses with ALT and AST that would work how, however, some people continue to have damage while levels do not increase. I don't want to advise you not to want to wipe out a virus. I'm sorry I'm on the fence with this - not enough knowledge. You don't want to have to repeat the biopsy, so I question how you would know if the disease progressed. And, as Larry's doctor said, with a 1 chances are you could die of something else first. Nothing makes much sense here. -Wendy http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum Elmo's right! I know from personal experience. doogie That's hardly the case!! You are nothing more than a guinea pig to the pharmaceutical company running the trial. All they are interested in is collecting data from your experience and they are hoping it's the kind that shines a favorable light on their brand of drugs. You would be better served by having a knowledgeable, caring doc or practitioner that isn't being told how they must treat you. Elmo ///////////// I see being in a study as getting better care? They would be more interested in me, any comments. Mags I don't want to influence you in one direction or another. I'm sorry I'd written the other post now. What would have to occur, is you'd have to have a way of being tested every 3 - 6 months to see if the disease has progressed. And, althought some claim the Fibrosure (or Fibrospect) can do this non-invasively, others say the test is not that conclusive. If you can follow your disease to see if it progresses with ALT and AST that would work how, however, some people continue to have damage while levels do not increase. I don't want to advise you not to want to wipe out a virus. I'm sorry I'm on the fence with this - not enough knowledge. You don't want to have to repeat the biopsy, so I question how you would know if the disease progressed. And, as Larry's doctor said, with a 1 chances are you could die of something else first. Nothing makes much sense here. -Wendy http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum I was in a trial it was great the dr. he knew all about the sides and how to treat them and did everything he could to keep me going. It didnt cost me a dime. He is still doing trials and having success. I might have been the lab rat but oh well. I am cured of hep c.The chance of getting a good dr. are sometimes slim. I would rather have one that has been doing trials for years and years and years than some dr. who has little experience with interferons and the sides. go for it Juanita New Numbers Group: alt.support.hepatitis-c Date: Mon, Aug 29, 2005, 4:11pm (CDT+1) From: chillnil@rogers.com (mags) My Doctors office called and they had the following stats for me. 1b geno, 66 ALT, 60 AST, liver biopsy mild stage 1 and viral load 562,000. Mentioned a study whereby you check your viral load at 12 weeks and if you show a SVR and at 24 weeks you show an SVR you take your meds for 48 weeks. If you do not show SVR at 12 or 24 you stay on tx for 1 yr and 6 months. This study is to look at slow responders. Your opinion please. Mags //////////// It makes sense to me, Mags. But you need more info, in particular 'What dose of interferon and ribavirin will you get?" I was in the first clinical trial for Scherring's peglyated interferon and was given a small dose of ribavirin (4 caps a day). It's very possible this was the reason why I relapsed after coming off the meds. Make certain you get enough of the drugs to be effective! Your use of the term "SVR" is incorrect. SVR means you have no detectable virus 6 months after finishing treatment. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum Thanks Elmo - I don't have this jargon down pat yet but I suspect its coming! I will find out next Friday about my dosage etc. Mags > New Numbers > [quoted text clipped - 22 lines] > > http://community.webtv.net/elmoemerson/TheFamilyAlbum |
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