Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Thank you Emo, My Dr didn't say anything about me having a problem getting meds, I guess I better make sure they are available, thanks for the tips. I have geno type > Bonnie, scared only gets your adrenalin going, and the liver has to clean it > up. > If you got it at work, and you are only 28, unless you are a VERY heavy > drinker, you are in a panic over nothing. It is a very slow acting virus. > Eat healthy. Cut your animal fat intake back as much as you can and stick to > as much veggies and grains as you can. Are you Geno 1a or 1b? You have > an extermely low viral load.....most of us have a load over a million, way > over a million. Unless your doctor has the medication, you'll have to call > scherring with your prescription and get on a waiting list for a " access > assurance number " which is your garentee that you will have the medication > every month of treatment. I called last march and got my number July 9th. > > People react differently. My first shot was a breeze for 12 hours, then it > was 12 hours of the worst flu symptoms you could imagine......I am a laborer > and other than normal exhaustion from working in 100 degree weather, I'm > doing good. The second injection wasn't anything more than a real tired > feeling. I also worked at a friends in this heat wave. I work with a friend > who has large muscle fatigue, but little else for symptoms/side effects. > Apparently this injection is MUCH easier on the body than the old 3 shots a > week drug..... > > Please don't worry, and take care of your health, diet, and drink as much > water as you can. there are links to Scherring Plough and access assurance > ......I never saved them, but others here have I am sure. > > When I first found out,,,,,, I mourned my perfect health.....and couldnt > believe I had something that could destroy my liver.....it's hard to > comprehend all this at first. If you feel a need to cry....cry. It is not an > immediate death sentence. I am sure you're doctor told you that most people > die WITH it than FROM it...... > > It still doesnt mean we want to have it. > > There are some great people here.....many have been thru the old > treatments.....many are waiting for their #'s. > > Later, Emo > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Oh, yeah a hepoligist(i think that is what they are called) I don't even know if there are any in my area. At least his nurse is good. I have a pretty nice Dr, he is also very cute. LOL He is pretty young but he says that he has the latest in hep treatments and he also did say that there is not a whole lot of info about hepC. I guess in 20 years they will get it right until then I think we will all be test rats. LOL Bonnie > yes I do!!! but he is just not patient friendly, once u start treatment, his nurse pretty well handles everything!! and I do like her!! I just think a bunch of dr's jumped on the bandwagon on this hep c thing and they really don't know that much about it! like a specialist in hep-c only!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Oh, yeah a hepoligist(i think that is what they are called) I don't even know if there are any in my area. At least his nurse is good. I have a pretty nice Dr, he is also very cute. LOL He is pretty young but he says that he has the latest in hep treatments and he also did say that there is not a whole lot of info about hepC. I guess in 20 years they will get it right until then I think we will all be test rats. LOL Bonnie > yes I do!!! but he is just not patient friendly, once u start treatment, his nurse pretty well handles everything!! and I do like her!! I just think a bunch of dr's jumped on the bandwagon on this hep c thing and they really don't know that much about it! like a specialist in hep-c only!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 The problems are that Hep C has not undergone enough extensive study... it'll be another 10 years easy before more prevalent data is known. My blood work was all within acceptable numbers too, however the biopsy and scan showed that I only had 25 percent of my liver that was still functioning, so to date, it is still the biopsy that is the most reliable data. Princess www.studioreflections.com Re: New Member Carol, I think it works like the blood work! My blood work shows I am okay, but my biopsy did not. I did treatment 3 times. Well really twice, combo stopped at 3 weeks. But both times I responded, show non-detectable just after 1month, stayed on 8 months first time, 6 months second time. Non-detetable all through treatment. 3 weeks after treatment, viral leval back up. I still am not sure they know what the ..... they are doing. But I am with Marilyn about treatment. Waiting for something new. P.S Hi new member. I have had HepC for about 20 years. Diagnosed in 97. Just by chance also. They started testing me for MS and just kept going down the line tilll they finally tested me for HepC. Dana dragonrider wrote:something is really bothering me!! a bunch of us are only on the program for 6 months, WHY!! Pamela and others get a year, I do not understand what is the difference! I asked the nurse and she said well if u don't respond within 6 mo. u probably wont!! so why not put everyone on 6 mo??? why do I feel like a experiment!!!??? carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 The problems are that Hep C has not undergone enough extensive study... it'll be another 10 years easy before more prevalent data is known. My blood work was all within acceptable numbers too, however the biopsy and scan showed that I only had 25 percent of my liver that was still functioning, so to date, it is still the biopsy that is the most reliable data. Princess www.studioreflections.com Re: New Member Carol, I think it works like the blood work! My blood work shows I am okay, but my biopsy did not. I did treatment 3 times. Well really twice, combo stopped at 3 weeks. But both times I responded, show non-detectable just after 1month, stayed on 8 months first time, 6 months second time. Non-detetable all through treatment. 3 weeks after treatment, viral leval back up. I still am not sure they know what the ..... they are doing. But I am with Marilyn about treatment. Waiting for something new. P.S Hi new member. I have had HepC for about 20 years. Diagnosed in 97. Just by chance also. They started testing me for MS and just kept going down the line tilll they finally tested me for HepC. Dana dragonrider wrote:something is really bothering me!! a bunch of us are only on the program for 6 months, WHY!! Pamela and others get a year, I do not understand what is the difference! I asked the nurse and she said well if u don't respond within 6 mo. u probably wont!! so why not put everyone on 6 mo??? why do I feel like a experiment!!!??? carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 It depends on which treatment... as far as I know there is the first treatment which is 3 shots a week for 12 months, and the combo treatment which is supposed to be 1 shot a week for 6 months. Genotype may have something to do with it as well. I am genotype 3a, which originates in southeast asia, brought back to this country by many viet nam vets... I don't know of many other 3a folks at the moment, so it's hard to say. Princess www.studioreflections.com Re: New Member something is really bothering me!! a bunch of us are only on the program for 6 months, WHY!! Pamela and others get a year, I do not understand what is the difference! I asked the nurse and she said well if u don't respond within 6 mo. u probably wont!! so why not put everyone on 6 mo??? why do I feel like a experiment!!!??? carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 It depends on which treatment... as far as I know there is the first treatment which is 3 shots a week for 12 months, and the combo treatment which is supposed to be 1 shot a week for 6 months. Genotype may have something to do with it as well. I am genotype 3a, which originates in southeast asia, brought back to this country by many viet nam vets... I don't know of many other 3a folks at the moment, so it's hard to say. Princess www.studioreflections.com Re: New Member something is really bothering me!! a bunch of us are only on the program for 6 months, WHY!! Pamela and others get a year, I do not understand what is the difference! I asked the nurse and she said well if u don't respond within 6 mo. u probably wont!! so why not put everyone on 6 mo??? why do I feel like a experiment!!!??? carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 type 3 is rare I think! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 type 3 is rare I think! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Yes, it is rare... it originates in Viet Nam and supposedly only made it to this country from Viet Nam vets returning... it is however supposedly, the easiest to treat, but when you've lost 75 percent of your liver already, oh well... Princess www.studioreflections.com Re: New Member type 3 is rare I think! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Yes, it is rare... it originates in Viet Nam and supposedly only made it to this country from Viet Nam vets returning... it is however supposedly, the easiest to treat, but when you've lost 75 percent of your liver already, oh well... Princess www.studioreflections.com Re: New Member type 3 is rare I think! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Yes Dana....that is what the Birdbrain told me last year after the results of my biopsy were in!!!! Bruce Bacon M.D. was the Doctor who headed up the " team " who treated Naomi. He is at St.Louis University.......I'm waiting on a packet from them and can send you more info on him and where he is when I get it, if you'd like. Emo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Yes Dana....that is what the Birdbrain told me last year after the results of my biopsy were in!!!! Bruce Bacon M.D. was the Doctor who headed up the " team " who treated Naomi. He is at St.Louis University.......I'm waiting on a packet from them and can send you more info on him and where he is when I get it, if you'd like. Emo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 AND NO EGG NOGGIN EITHER! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 AND NO EGG NOGGIN EITHER! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Hi Bonnie, I was dx'ed in 3-99 through a routine blood test (no symptoms) and had a viral load of 40 million (eeek)...I started a combo tx. (3 shots a week and pills everyday) that October and stayed on it for only 7 months. I had to stop because of a very low white count but the good news is my viral load has been less 1000 since then. The worst part I would say was the depression (I was never on anti- depressives but looking back I think it would have helped). Now things are back to " normal " (happy, optimistic about the future, etc) and am enjoying life again. It was a hard time but there was a beautiful light at the end. I wish you well through your journey. Please call on me if your need a friend. Lori > Hello, I am 28 I work at a Pediatric Office and I was just diagnosed > with hep C. My Viral load at last count was 453,000. Pretty high. I > had my liver biopsy this week and should stat pills and injections > around the 16 of August. I have genotype 1. so I quess there is a > 50/50 chance of cure rate. I quess the thing I hate the most is the > abdominal swelling and the severe fatigue. I am worried about the > chemo injections. The plan is every friday for 12 months and pills > twice a day, weekly dr. appts and blood draws. I hope to still be > able to work full time. How bad are the effects of interferon? they > are not sure how I got it, they are sure it is from work exposure. > and the good news is that my abdominal ultrasound last month showed > that my liver at least LOOKED healthy. LOL > > Scared Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Hi Bonnie, I was dx'ed in 3-99 through a routine blood test (no symptoms) and had a viral load of 40 million (eeek)...I started a combo tx. (3 shots a week and pills everyday) that October and stayed on it for only 7 months. I had to stop because of a very low white count but the good news is my viral load has been less 1000 since then. The worst part I would say was the depression (I was never on anti- depressives but looking back I think it would have helped). Now things are back to " normal " (happy, optimistic about the future, etc) and am enjoying life again. It was a hard time but there was a beautiful light at the end. I wish you well through your journey. Please call on me if your need a friend. Lori > Hello, I am 28 I work at a Pediatric Office and I was just diagnosed > with hep C. My Viral load at last count was 453,000. Pretty high. I > had my liver biopsy this week and should stat pills and injections > around the 16 of August. I have genotype 1. so I quess there is a > 50/50 chance of cure rate. I quess the thing I hate the most is the > abdominal swelling and the severe fatigue. I am worried about the > chemo injections. The plan is every friday for 12 months and pills > twice a day, weekly dr. appts and blood draws. I hope to still be > able to work full time. How bad are the effects of interferon? they > are not sure how I got it, they are sure it is from work exposure. > and the good news is that my abdominal ultrasound last month showed > that my liver at least LOOKED healthy. LOL > > Scared Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Thanks Lori, I am glad you are doing better. As I have been reading all the posts I get the idea that your viral load can go away and then come back? Does this mean that you can do the 12 months of treatment, be fine and then have it come back? Bonnie > > Hello, I am 28 I work at a Pediatric Office and I was just > diagnosed > > with hep C. My Viral load at last count was 453,000. Pretty high. > I > > had my liver biopsy this week and should stat pills and injections > > around the 16 of August. I have genotype 1. so I quess there is a > > 50/50 chance of cure rate. I quess the thing I hate the most is the > > abdominal swelling and the severe fatigue. I am worried about the > > chemo injections. The plan is every friday for 12 months and pills > > twice a day, weekly dr. appts and blood draws. I hope to still be > > able to work full time. How bad are the effects of interferon? > they > > are not sure how I got it, they are sure it is from work exposure. > > and the good news is that my abdominal ultrasound last month showed > > that my liver at least LOOKED healthy. LOL > > > > Scared Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2002 Report Share Posted August 4, 2002 Thanks Lori, I am glad you are doing better. As I have been reading all the posts I get the idea that your viral load can go away and then come back? Does this mean that you can do the 12 months of treatment, be fine and then have it come back? Bonnie > > Hello, I am 28 I work at a Pediatric Office and I was just > diagnosed > > with hep C. My Viral load at last count was 453,000. Pretty high. > I > > had my liver biopsy this week and should stat pills and injections > > around the 16 of August. I have genotype 1. so I quess there is a > > 50/50 chance of cure rate. I quess the thing I hate the most is the > > abdominal swelling and the severe fatigue. I am worried about the > > chemo injections. The plan is every friday for 12 months and pills > > twice a day, weekly dr. appts and blood draws. I hope to still be > > able to work full time. How bad are the effects of interferon? > they > > are not sure how I got it, they are sure it is from work exposure. > > and the good news is that my abdominal ultrasound last month showed > > that my liver at least LOOKED healthy. LOL > > > > Scared Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 unfortunately, yes. i did the peg intron (schering) for 6 mos, finally at about 4.5 months the RNA test showed undectable. but the liver enzymes never dropped below 100/60 (alt/ast) which we thought was strange. at 6 mos i was in remission and being genotype 3 the doc said i had completed the recommended course of treatment. 4 weeks later the followup bloodwork showed it had returned and the doc ordered a qualitative test (to show viral load) and i haven't called to find out what the new count is...like it really matters. i'm considering round 2 when the pegasys (la rouche) becomes available later this year. so, your doc may order not only the HCV presence, but the qualitative test as well. watch the liver enzyme levels in your bloodwork, this is a pretty good indication of how well the treatment is working. doc said the liver enzyme levels usually drop within the first 4-8 weeks which is a pretty good indication the treatment is working the the virus is getting it's ass kicked. the buelljockey Re: New Member Thanks Lori, I am glad you are doing better. As I have been reading all the posts I get the idea that your viral load can go away and then come back? Does this mean that you can do the 12 months of treatment, be fine and then have it come back? Bonnie > > Hello, I am 28 I work at a Pediatric Office and I was just > diagnosed > > with hep C. My Viral load at last count was 453,000. Pretty high. > I > > had my liver biopsy this week and should stat pills and injections > > around the 16 of August. I have genotype 1. so I quess there is a > > 50/50 chance of cure rate. I quess the thing I hate the most is the > > abdominal swelling and the severe fatigue. I am worried about the > > chemo injections. The plan is every friday for 12 months and pills > > twice a day, weekly dr. appts and blood draws. I hope to still be > > able to work full time. How bad are the effects of interferon? > they > > are not sure how I got it, they are sure it is from work exposure. > > and the good news is that my abdominal ultrasound last month showed > > that my liver at least LOOKED healthy. LOL > > > > Scared Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 unfortunately, yes. i did the peg intron (schering) for 6 mos, finally at about 4.5 months the RNA test showed undectable. but the liver enzymes never dropped below 100/60 (alt/ast) which we thought was strange. at 6 mos i was in remission and being genotype 3 the doc said i had completed the recommended course of treatment. 4 weeks later the followup bloodwork showed it had returned and the doc ordered a qualitative test (to show viral load) and i haven't called to find out what the new count is...like it really matters. i'm considering round 2 when the pegasys (la rouche) becomes available later this year. so, your doc may order not only the HCV presence, but the qualitative test as well. watch the liver enzyme levels in your bloodwork, this is a pretty good indication of how well the treatment is working. doc said the liver enzyme levels usually drop within the first 4-8 weeks which is a pretty good indication the treatment is working the the virus is getting it's ass kicked. the buelljockey Re: New Member Thanks Lori, I am glad you are doing better. As I have been reading all the posts I get the idea that your viral load can go away and then come back? Does this mean that you can do the 12 months of treatment, be fine and then have it come back? Bonnie > > Hello, I am 28 I work at a Pediatric Office and I was just > diagnosed > > with hep C. My Viral load at last count was 453,000. Pretty high. > I > > had my liver biopsy this week and should stat pills and injections > > around the 16 of August. I have genotype 1. so I quess there is a > > 50/50 chance of cure rate. I quess the thing I hate the most is the > > abdominal swelling and the severe fatigue. I am worried about the > > chemo injections. The plan is every friday for 12 months and pills > > twice a day, weekly dr. appts and blood draws. I hope to still be > > able to work full time. How bad are the effects of interferon? > they > > are not sure how I got it, they are sure it is from work exposure. > > and the good news is that my abdominal ultrasound last month showed > > that my liver at least LOOKED healthy. LOL > > > > Scared Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 Yes Emo, I would love to know more about it. Sounds crazy, drinking was the one thing they told me to absolutely stay away from. My Silly Doc told me other than that, I can have whatever I want. No restrictions on diet except do not take Iron. Not going to him again though. He told me my symptoms were not related to Hepc because my viral load and enzymes show not to high. Biopsy showed inflamation, beginning fibrosis and, I forget something else. He has sent me away every time saying not related to HepC and then I did allot of research. Going to send him all the research I have done. He is an idiot. I don't mind if they say they don't know or are not sure. But to send me all over hell and back because they know it all, and actually know nothing. Now that pisses me off. I finally got a referral to try Acupunture. Have to set appt. Will let you guys know when I find out. Tried everything else. Tired of pain, being tired and sick all the time. And all these crazy Doctors all saying something different. Dana theemoculli@... wrote:Yes Dana....that is what the Birdbrain told me last year after the results of my biopsy were in!!!! Bruce Bacon M.D. was the Doctor who headed up the " team " who treated Naomi. He is at St.Louis University.......I'm waiting on a packet from them and can send you more info on him and where he is when I get it, if you'd like. Emo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 Yes Emo, I would love to know more about it. Sounds crazy, drinking was the one thing they told me to absolutely stay away from. My Silly Doc told me other than that, I can have whatever I want. No restrictions on diet except do not take Iron. Not going to him again though. He told me my symptoms were not related to Hepc because my viral load and enzymes show not to high. Biopsy showed inflamation, beginning fibrosis and, I forget something else. He has sent me away every time saying not related to HepC and then I did allot of research. Going to send him all the research I have done. He is an idiot. I don't mind if they say they don't know or are not sure. But to send me all over hell and back because they know it all, and actually know nothing. Now that pisses me off. I finally got a referral to try Acupunture. Have to set appt. Will let you guys know when I find out. Tried everything else. Tired of pain, being tired and sick all the time. And all these crazy Doctors all saying something different. Dana theemoculli@... wrote:Yes Dana....that is what the Birdbrain told me last year after the results of my biopsy were in!!!! Bruce Bacon M.D. was the Doctor who headed up the " team " who treated Naomi. He is at St.Louis University.......I'm waiting on a packet from them and can send you more info on him and where he is when I get it, if you'd like. Emo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 Bonnie, Yes, Hep C can become undetectable; however, that is not a cure, there is no cure. The interferon is only a means to slow down the disease right now and hopefully prevent the onset of liver cancer. Princess www.studioreflections.com Re: New Member Thanks Lori, I am glad you are doing better. As I have been reading all the posts I get the idea that your viral load can go away and then come back? Does this mean that you can do the 12 months of treatment, be fine and then have it come back? Bonnie > > Hello, I am 28 I work at a Pediatric Office and I was just > diagnosed > > with hep C. My Viral load at last count was 453,000. Pretty high. > I > > had my liver biopsy this week and should stat pills and injections > > around the 16 of August. I have genotype 1. so I quess there is a > > 50/50 chance of cure rate. I quess the thing I hate the most is the > > abdominal swelling and the severe fatigue. I am worried about the > > chemo injections. The plan is every friday for 12 months and pills > > twice a day, weekly dr. appts and blood draws. I hope to still be > > able to work full time. How bad are the effects of interferon? > they > > are not sure how I got it, they are sure it is from work exposure. > > and the good news is that my abdominal ultrasound last month showed > > that my liver at least LOOKED healthy. LOL > > > > Scared Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2002 Report Share Posted August 5, 2002 Bonnie, Yes, Hep C can become undetectable; however, that is not a cure, there is no cure. The interferon is only a means to slow down the disease right now and hopefully prevent the onset of liver cancer. Princess www.studioreflections.com Re: New Member Thanks Lori, I am glad you are doing better. As I have been reading all the posts I get the idea that your viral load can go away and then come back? Does this mean that you can do the 12 months of treatment, be fine and then have it come back? Bonnie > > Hello, I am 28 I work at a Pediatric Office and I was just > diagnosed > > with hep C. My Viral load at last count was 453,000. Pretty high. > I > > had my liver biopsy this week and should stat pills and injections > > around the 16 of August. I have genotype 1. so I quess there is a > > 50/50 chance of cure rate. I quess the thing I hate the most is the > > abdominal swelling and the severe fatigue. I am worried about the > > chemo injections. The plan is every friday for 12 months and pills > > twice a day, weekly dr. appts and blood draws. I hope to still be > > able to work full time. How bad are the effects of interferon? > they > > are not sure how I got it, they are sure it is from work exposure. > > and the good news is that my abdominal ultrasound last month showed > > that my liver at least LOOKED healthy. LOL > > > > Scared Bonnie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.