Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hello you said your other doc said you weren't sick enough. Did you have to have a biopsy? Did you feel poorly? Is this treatment to stave off getting sicker?? My doc tells me my liver function test are ok and I should'nt worry about it now. I'm getting concerned about my status. I feel good genereally but I have had hep c for quite a while. Does every one get sick and die or do some people have it without any bad results. I don't want to take chemicals or drugs until I have to. Does your side hurt where the liver is??If you or anyone else has answwers to these questions I'd love to hear from you. I have a 2 year old son whom I'd love to be around for. He has down syndrome and is the most incredible soul I've ever met. thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hello you said your other doc said you weren't sick enough. Did you have to have a biopsy? Did you feel poorly? Is this treatment to stave off getting sicker?? My doc tells me my liver function test are ok and I should'nt worry about it now. I'm getting concerned about my status. I feel good genereally but I have had hep c for quite a while. Does every one get sick and die or do some people have it without any bad results. I don't want to take chemicals or drugs until I have to. Does your side hurt where the liver is??If you or anyone else has answwers to these questions I'd love to hear from you. I have a 2 year old son whom I'd love to be around for. He has down syndrome and is the most incredible soul I've ever met. thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hello you said your other doc said you weren't sick enough. Did you have to have a biopsy? Did you feel poorly? Is this treatment to stave off getting sicker?? My doc tells me my liver function test are ok and I should'nt worry about it now. I'm getting concerned about my status. I feel good genereally but I have had hep c for quite a while. Does every one get sick and die or do some people have it without any bad results. I don't want to take chemicals or drugs until I have to. Does your side hurt where the liver is??If you or anyone else has answwers to these questions I'd love to hear from you. I have a 2 year old son whom I'd love to be around for. He has down syndrome and is the most incredible soul I've ever met. thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 I am a 1b also. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 There is a study from Italy that states the 3a and 3b are very responsive to the current combo treatment. Their numbers were 80%! It is very encouraging. My Doc has nothing but good thoughts about this. He says all of his 3a and 3b patients responded...I would hate to brake that winning streak!! Sharon Nicholson Hepatitis Education & Patient Coalition (H. E. P. C.) Executive Director <A HREF= " http://www.suite101.com/welcome.cfm/hepatitis_abc " >Hepatitis A, B, C's - editor Suite101.com</A> http://www.suite101.com/welcome.cfm/hepatitis_abc Join our e-group mailing list online! <A HREF= " /group/ArizonaHepatitis C " >eGroups : ArizonaHepatitis C</A> /group/ArizonaHepatitis C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Dear , Have you had a biopsy done? If so, how long ago? This is the only way to know where you stand with HCV. LFT's are NOT reliable as indicators of how much if any damage has occurred to your liver. They are simply a guide of how your liver was functioning when the blood was drawn. The can fluctuate a lot, from week to week, and can be perfectly normal even in cirrhosis. As far as how you feel, this is also not a guide to go by. By the time most people have symptoms such as pain in the area of the liver the disease can be pretty advanced. It's much better to treat it before it gets to this stage, and more likely to be successful too. If you are getting concerned I say trust your instincts. If you haven't had a biopsy, or if it's been several years, have one done. Good luck! Claudine ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Sharon, Les... I also am a 3a. Has any 3a's had treatment and remained undetected for any length of time? Was it the combo or single treatment? I havent started as yet and would like to hear as my time will be coming shortly to try and I do not know which would do. Is there a standard for 3a's? Florence > << I'm a 3a > Sharon Nicholson >> > Hi Sharon: > I'm also a 3a, have you tried combo treatment yet? > > Les > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Sharon, Les... I also am a 3a. Has any 3a's had treatment and remained undetected for any length of time? Was it the combo or single treatment? I havent started as yet and would like to hear as my time will be coming shortly to try and I do not know which would do. Is there a standard for 3a's? Florence > << I'm a 3a > Sharon Nicholson >> > Hi Sharon: > I'm also a 3a, have you tried combo treatment yet? > > Les > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 claudinecrews@... writes: << LFT's are NOT reliable as indicators of how much if any damage has occurred to your liver. They are simply a guide of how your liver was functioning when the blood was drawn. The can fluctuate a lot, from week to week, and can be perfectly normal even in cirrhosis. >> Claudine you are so right! Some will say that the evasive procedure of a liver biopsy is too risky, but I say until something better comes along, Getting one is the only way to be safe. Sharon Nicholson Hepatitis Education & Patient Coalition (H. E. P. C.) Executive Director <A HREF= " http://www.suite101.com/welcome.cfm/hepatitis_abc " >Hepatitis A, B, C's - editor Suite101.com</A> http://www.suite101.com/welcome.cfm/hepatitis_abc Join our e-group mailing list online! <A HREF= " /group/ArizonaHepatitis C " >eGroups : ArizonaHepatitis C</A> /group/ArizonaHepatitis C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 claudinecrews@... writes: << LFT's are NOT reliable as indicators of how much if any damage has occurred to your liver. They are simply a guide of how your liver was functioning when the blood was drawn. The can fluctuate a lot, from week to week, and can be perfectly normal even in cirrhosis. >> Claudine you are so right! Some will say that the evasive procedure of a liver biopsy is too risky, but I say until something better comes along, Getting one is the only way to be safe. Sharon Nicholson Hepatitis Education & Patient Coalition (H. E. P. C.) Executive Director <A HREF= " http://www.suite101.com/welcome.cfm/hepatitis_abc " >Hepatitis A, B, C's - editor Suite101.com</A> http://www.suite101.com/welcome.cfm/hepatitis_abc Join our e-group mailing list online! <A HREF= " /group/ArizonaHepatitis C " >eGroups : ArizonaHepatitis C</A> /group/ArizonaHepatitis C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 1b that be charley from phila. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 In a message dated 4/20/00 6:57:49 PM Pacific Daylight Time, claudinecrews@... writes: << Dear Florence, Wait for the pegylated and do it with combo (combo is always best if you can tolerate the ribavirin.) In one study I saw there was a 100% response on genotype 2 and 3's. Claudine >From: " Florence " <femorris@... > Sharon, Les... > I also am a 3a. Has any 3a's had treatment and remained undetected >for >any length of time? Was it the combo or single treatment? I havent >started >as yet and would like to hear as my time will be coming shortly to try and >I >do not know which would do. Is there a standard for 3a's? > Florence >> Hello all: Yes, I did combo for 48 weeks went undetectable the first month, ended treatment in Aug 99 at my 6 month post treatment I was still undetectable, will not have next PCR until around Christmas and I hope to still be PCR negative. Take care all, Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 >> Hello all: Yes, I did combo for 48 weeks went undetectable the first month, ended treatment in Aug 99 at my 6 month post treatment I was still undetectable, will not have next PCR until around Christmas and I hope to still be PCR negative. Take care all, Les Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 Ahhh, Claudine, Music to my ears!!! Being single, sole supporter, dumping everything into my home, raising fur babies and working like a dog, if I must have sides for any treatment , I want it to be worth my while to miss any days that are needed from work. I have missed many days being care giver to my sis who is battling breast cancer so after her last big tretment of chemo (April 27th) , I will probably have to BEG for catastrophic leave for myself. No problem! Last night went to a Myofascial Group (dont know why my doc didnt send me to a FM group) and learned some tips on how to take control of my FM. The therapist there referred me to the FM group so hopefully I can take control of this stinking body trip that pops up at the most ridiculous time! Does anyone know if this syndrome (?) goes away after treatment is successful? Or if any of our autoimmune (thyroid excluded) diseases fade away or will they remain? The benefit of treatment is stopping other diseases from forming. I am tired of being a generous HOST to my body!! Combo, here I come. Whining, Florence > you can tolerate the ribavirin.) In one study I saw there was a 100% > response on genotype 2 and 3's. > Claudine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 most people have one something.. I got 1b too alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 most people have one something.. I got 1b too alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 most people have one something.. I got 1b too alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 most people have one something.. I got 1b too alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 nice to meet you. I have normal liver enzymes. Have had for 10 years or more. I still have ongoing liver damage. I have hep symptoms that are worsening with time (and age haha). I want to be around to see my grandbabies grow up and have babies of their own, so I know how you feel. I wouldn't say you have to have a biopsy, but how else are you gonna know how your liver is and how else will you determine treatment options? And it isn't just one thing, it's a combination of things - pcr, genotype, biopsy and others like overall health, age, etc. You don't HAVE to do treatment now, unless there are certain factors that say you better give something a try than do nothing and die. Then again, there is a chance we could live and die of old age... altho... in my case... I'd have to die to feel better! hahahahaha It takes decades usually for the liver to go from stage to stage. Problem is... we don't want to be too old when we do try something and we don't want to go thru hell in the meantime hurting and being sick from the hep... and we don't want to take a chance we are one of the few who progress rapidly to cirrhosis. So many if's . Please learn as much as you can and make the best decision for you and your family. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 Sharon I agree.. it's invasive but heck! Hep is pretty damned invasive! And there's far less danger of someone croaking from a biopsy than from the hep you think? ) Slay the Dragon!!! And don't forget the ketchup. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 Florence that's not whining! I don't have any " official " diagnosis on my aches and pains. It is something I'd like to do for the future. If I can be labeled " disability " then I can use it if I need time off work. Or heck even a closer parking space. Some days, I barely make it upstairs to my desk and we even have an elevator thank goodness. I felt so embarrassed the other day at work. This lady hops up the stairs and says I'd be healthier if I walked the stairs. She doesn't know about the hep, doesn't know me and doesn't see me use the stairs later in the day when I feel better. I just wanted to cry. Or slap her. But I cried instead. Then my girlfriend bubbles into my cubicle wanting me to walk with her down the hall while she gets a coke. I haven't even sat in my chair yet. I said no, and was about to ask her if she'd get me some ice water till she called me a grump. More silent tears. My girlfriend I'll have a talk with this weekend. Been thinking about how to do it without making her feel bad or putting her down ya know? I'm glad you found the group! How did you know you had FM? Can you tell me more about it? (if you did already and I missed it I'm sorry) alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 wooooooooooooooooooooo hooooooooooooooooooooo Les!!! I'll keep my heppy toes crossed for ya! alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 wooooooooooooooooooooo hooooooooooooooooooooo Les!!! I'll keep my heppy toes crossed for ya! alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 it can be a year, it can be the rest of your life. I always say it's a crap shoot. I've talked to so many heppers over the years <sigh> Hope for the best! alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2000 Report Share Posted April 22, 2000 it can be a year, it can be the rest of your life. I always say it's a crap shoot. I've talked to so many heppers over the years <sigh> Hope for the best! alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
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