Aa
Flame Me -Go For It
I have had HCV for over 25 years and I am in stage 3. I was dx'd in 2004. I also have many other health issues including chronic clinical depression (before dx) and heart disease. I was told by two gastro's that tx is out of the question for me and I believe it. To me, putting something into your body to kill a virus (which can't be cured-viruses mutate) is killing you, too. The tx, if "successful" has horrible sides and some are irreversible. For those who feel better I am happy for you but I have been doing 3 solid years of continual research on this disease and from what I gather, people are never cured, they just go into remission for a while and then it usually comes back. I don't want to rain on anyone's parade and I would have never even written this were it not for the fact that everytime I join a Hep C on-line Support Group, I get "you need to do TX" shoved down my throat and if i try to explain why I can't, they chew me out or dismiss me. Is that fair? I have a right to join a Hep C group and not be run off it because I have Hep C, too. I just can't get it treated with that chemo and it's not my fault. Also, as ill as I am (stage 3-90% bedridden because of extreme chronic fatgue), I wouldn't take it anyway. I don't wish to suffer for a year only to have a doctor tell me that it didn't work OR if it was put into remission, only to have it come back on me after I walked around on a happy cloud thinking I was cured. I can't get on a list for a transplant because in my state, it's not possible with my crummy County insurance. Anyway, I have been reading reports of the virus being in other organ systems and after the liver transplant, it sneaks out of wherever it's hiding and invades the new liver. I had colon cancer (I beat it) and I am tired of being poked and prodded with needles and invasive, risky procedures. Enough is enough. For me. I don't shove my beliefs down anyone's throat-I just display them. If anyone shares my belief, I invite them to be my friend. If they don't, we can be friends but please be polite and don't shun me or down me because I am not a TX person. If TX buys people a little more time or makes them feel better, I am very happy for them. They are the lucky ones. But there are just too many horrible testimonials about irreversible sides and failure of treatment even after people do it 4 or 5 times. The body can only take so much abuse. Also, the doctors get kickbacks from the pharmaceutical companies for promoting it. That's why so many of them are so eager to suggest it, even without checking to see if you are at risk of a stroke, heart attack, or suicide, (like me). I condition my liver with herbals like Milkthistle, Vitamin E, B-12, Lecithin, Alpha Omega 3 Fish Oil, lots of bottled drinking water, a low stress life style, and a healthy diet. It's the best that I can do for myself. I DO suggest that people who can't do the tx try that route. There are just not any forums on the Internet for people like me (and there are a lot like me) for support. Not that I could ever find them. If anyone knows of a place, please let me know. Thanks for listening.
This is your opinion and I understand why you arrived at it given that you cannot treat yourself.
Best of luck to you.
Best of luck to you.
sorry you misunderstood me. pig was right i was talking about progressing to cirrhosis, and even with that no one can predict anything for sure. the word here has been stage 3 treat, stage 2 and below wait for new meds. i was just telling you the possibilities of what could happen, i really hope it does not. best of luck
Additionally, some of your health problems may be caused by the hcv virus, especially chronic fatigue. I'm not telling you to treat, but you should be under the care of a good hepatologist. The situation with hcv treatment is constantly changing - it's not so cookie cutter anymore, and there are all sorts of options between SOC and not treating at all.
I think Copyman was saying that you 5 years left before onset of cirrhosis. People can live for many years with cirrhosis, unless complications (like cancer) ensue. If you cannot treat, you're doing the right thing with your lifestyle. But if it were me, I'd want to stay up to date on the latest research, which you're doing, and remain open to the possibility of treating at some time in the future. Although the virus never goes away, there is not much evidence of continuing disease in people who've achieved SVR. If you ever had chickenpox, for example, you still have particles of the virus hiding somewhere in your body - but you aren't sick from it.
Also, this forum is very welcoming to everybody, whatever their choices may be, unless they're trying to push their point of view on all of us OR they're selling something. We've had some experiences with trolls and flamers recently, and some of us got rather nasty - but it was called for. Because you're not a salesman, crackpot or huckster - merely another hepper like the rest of us, I'm glad you've joined us and look forward to hearing about your journey. Best of luck.
Also, this forum is very welcoming to everybody, whatever their choices may be, unless they're trying to push their point of view on all of us OR they're selling something. We've had some experiences with trolls and flamers recently, and some of us got rather nasty - but it was called for. Because you're not a salesman, crackpot or huckster - merely another hepper like the rest of us, I'm glad you've joined us and look forward to hearing about your journey. Best of luck.
I respect your opinion but (clearing throat) for you to tell me that I only have 5 years left is a bit presumptuous (with all due respect). I have done tons of research and no one can give another person an accurate date of Death:):)
I do NOT intend to die in 5 years. I take excellent care of myself, I am on a good herbal regime, and have spoken to Heppers that are in stage 4 and even cirrhotic who have been living well past even a Doctor's death sentence!!! I am speaking of people that are on healthy Hepper diets, herbal regimens, low stress lives and live 10 years or more PAST cirrhosis!!! Thanks for the warning-I'll take my chances. Actually for a stage 3, I am still functioning pretty well. God Bless you all.
I do NOT intend to die in 5 years. I take excellent care of myself, I am on a good herbal regime, and have spoken to Heppers that are in stage 4 and even cirrhotic who have been living well past even a Doctor's death sentence!!! I am speaking of people that are on healthy Hepper diets, herbal regimens, low stress lives and live 10 years or more PAST cirrhosis!!! Thanks for the warning-I'll take my chances. Actually for a stage 3, I am still functioning pretty well. God Bless you all.
Forgot to mention that he still has hepatitis c and his liver is doing well nine years after transplant.
Pretty much everybody who gets a liver transplant will have the new liver attacked by hepatitis c (it is not just "hiding" in the organs at the time of transplant, but is invariably plentiful in the blood). However, the transplanted liver is not always attacked to a serious degree after transplantation, and the new liver can improve with treatment after transplant via treatment and sometimes the hep c can be eliminated altogether after transplant with treatment.
Here is the story of a guy whose has hepatitis c and and whose liver is doing very well nine years after transplant.
http://www.awakenings.com/ltxp/
Here is the story of a guy whose has hepatitis c and and whose liver is doing very well nine years after transplant.
http://www.awakenings.com/ltxp/
welcome, not sure even a flame thrower could kill those little HCV buggers! i do not want to rain on your parade either but you do realize that being a stage 3 leaves you about 5 yrs give, or take a few years before the last stage of liver disease....CIRRHOSIS which can lead to liver cancer and/or transplant. wheather you cure the disease or not you give your liver a break by treating and may even regress a stage on biopsy. i know one thing for sure, the present tx for HCV is VERY harsh but end stage liver disease makes tx look like a walk in the park! hopefully new drugs are coming soon.
Welcome to the party.
Hepper flambe', doesn't sound too delicious to me but I'll bite.
Joking aside, some tx, some don't. What's right for one isn't right for all.
I personally believe you need to do what feels right, instinctively, for you.
with compassion, OH
Joking aside, some tx, some don't. What's right for one isn't right for all.
I personally believe you need to do what feels right, instinctively, for you.
with compassion, OH
Welcome!
First, welcome to the group and sorry life has dealt you such crummy cards. Feel free to express whatever thoughts you have, this is what this place is about, among other things.
No one here can accuse me of soft-peddling treatment, in fact I've oft been accused (unjustly I may add :) ) of just the opposite -- of scaring people into not treating because of the potential side effects of interferon.
That said, you're a stage 3, and it's important that you be very clear in your thinking as to what you may or may not be doing.
First, this whole debate regarding "cure versus remission" and the "virus living in other organs", etc, really should have very littel do with your decision whether to treat or not. Regardless of what the truth is.
Putting all the nebulous stuff aside, the medical community is in agreement on several important factors regarding treatment. And the two most important is: (1) SVR will in general stop, or even regress liver damage: and (2) SVR is durable, meaning once the virus is gone six months after stopping the treatment drugs, it will not come back. Again, all credible sources agree on the above two points.
And for you -- a stage 3 -- these two points are what may or may not eventually save your life -- or your liver -- depending on what action(s) you take in the future.
I understand your two gastro's told you not to treat. But in a sense they are offering you nothing but the very real potential of either needing a liver transplant or death before your natural time.
My suggestion is to take your records and see a liver specialist (hepatologist) at a major medical center. Lay out your entire story, including your depression, and see what they have to say.
Newer drug treatments and newer drugs (like Teleprevir) are increasing SVR rates and decreasing treatment times. And a motivated patient -- along with a motivated doctor -- should be able to handle most of the side effects you may encounter.
It's all risk versus reward. Treatment is not without risk but as a stage 3, you have to be ready to entertain more risk because you can potentially lose more.
Again, forget all the "cure vs remission" stuff. Your liver couldn't care less what label you give it after SVR. The important thing is that SVR will stop or regress liver damage and that once SVR, always SVR. That should be your mantra.
Please hang out, ask questions, and do get some more advice from another liver specialist.
-- Jim
No one here can accuse me of soft-peddling treatment, in fact I've oft been accused (unjustly I may add :) ) of just the opposite -- of scaring people into not treating because of the potential side effects of interferon.
That said, you're a stage 3, and it's important that you be very clear in your thinking as to what you may or may not be doing.
First, this whole debate regarding "cure versus remission" and the "virus living in other organs", etc, really should have very littel do with your decision whether to treat or not. Regardless of what the truth is.
Putting all the nebulous stuff aside, the medical community is in agreement on several important factors regarding treatment. And the two most important is: (1) SVR will in general stop, or even regress liver damage: and (2) SVR is durable, meaning once the virus is gone six months after stopping the treatment drugs, it will not come back. Again, all credible sources agree on the above two points.
And for you -- a stage 3 -- these two points are what may or may not eventually save your life -- or your liver -- depending on what action(s) you take in the future.
I understand your two gastro's told you not to treat. But in a sense they are offering you nothing but the very real potential of either needing a liver transplant or death before your natural time.
My suggestion is to take your records and see a liver specialist (hepatologist) at a major medical center. Lay out your entire story, including your depression, and see what they have to say.
Newer drug treatments and newer drugs (like Teleprevir) are increasing SVR rates and decreasing treatment times. And a motivated patient -- along with a motivated doctor -- should be able to handle most of the side effects you may encounter.
It's all risk versus reward. Treatment is not without risk but as a stage 3, you have to be ready to entertain more risk because you can potentially lose more.
Again, forget all the "cure vs remission" stuff. Your liver couldn't care less what label you give it after SVR. The important thing is that SVR will stop or regress liver damage and that once SVR, always SVR. That should be your mantra.
Please hang out, ask questions, and do get some more advice from another liver specialist.
-- Jim
You say: "For those who feel better I am happy for you but I have been doing 3 solid years of continual research on this disease and from what I gather, people are never cured, they just go into remission for a while and then it usually comes back."
I would love to see factual support for this statement. From everything I have read once a person becomes a "sustained viral responder" they remain serum undetectable - SVR is durable. If you have a reputable study or article to the contrary please post it.
Mike
I would love to see factual support for this statement. From everything I have read once a person becomes a "sustained viral responder" they remain serum undetectable - SVR is durable. If you have a reputable study or article to the contrary please post it.
Mike
welcome hepper56! I was diagnosed with this in 01? and I still havent treated....
To be completely honest with you? I have felt a certain bias from just a very few posters, but most are totally cool about it...but I don't get easily offended and I try not to personalize things too much...
no one can please everybody, there just are too many personalities, various views, etc to do that, but one thing most everyone here has is empathy for a fellow sufferer of this creepy disease, no one knows what having this is like better then a fellow traveler....
My own personal viewpoint, but I think if a person has a thin skin, and is easily offended and very sensitive, a message board on the internet, of any kind, probably won't be the best place for them to communicate with other people...
it's just the way of the internet, it's not like we are all sitting in a room together, where people might be more compelled to be polite and thoughtful in how they address each other, etc...
but I have gone to other forums (that are not disease related) and this is a "walk on the beach" compared to them, in terms of insulting, etc....people here, the vast majority, are really pretty nice and respectful of your views, as long as youre respectful to theirs, you should have little problem, however you view hepatitis or it's treatment, or non-treating as the case may be...we all have a right to our own opinions.
And if we do disagree, the debates can enlighten people here, whether they share the same views or not. I've learned a lot from people who don't agree with me. For the most part, it stays polite, but youre not going to knock every ball outta the park, so to speak, lol...sure you'll be fine!
To be completely honest with you? I have felt a certain bias from just a very few posters, but most are totally cool about it...but I don't get easily offended and I try not to personalize things too much...
no one can please everybody, there just are too many personalities, various views, etc to do that, but one thing most everyone here has is empathy for a fellow sufferer of this creepy disease, no one knows what having this is like better then a fellow traveler....
My own personal viewpoint, but I think if a person has a thin skin, and is easily offended and very sensitive, a message board on the internet, of any kind, probably won't be the best place for them to communicate with other people...
it's just the way of the internet, it's not like we are all sitting in a room together, where people might be more compelled to be polite and thoughtful in how they address each other, etc...
but I have gone to other forums (that are not disease related) and this is a "walk on the beach" compared to them, in terms of insulting, etc....people here, the vast majority, are really pretty nice and respectful of your views, as long as youre respectful to theirs, you should have little problem, however you view hepatitis or it's treatment, or non-treating as the case may be...we all have a right to our own opinions.
And if we do disagree, the debates can enlighten people here, whether they share the same views or not. I've learned a lot from people who don't agree with me. For the most part, it stays polite, but youre not going to knock every ball outta the park, so to speak, lol...sure you'll be fine!
Hey...this is just a quick lunch post. This is a good forum and there are many good people here. A friend told me once that in any forum....there is a lot of truth.....you just have to look for it. That's true here and elsewhere.
So far as getting flamed just remember that "the truth" is not always the same for alll people. Treating has saved many peoples lives. Treatment is often not kind to many people. I think where some people get into trouble is when the paint with a very broad brush and make sweeping generalizations like: "TX is poison".
For someone who has been struggling with trying to treat and suffering from sides hearing ultra negative treatment posts can be hard to take. It's all part of having HCV and about treating so it is a fair topic in my view but it is a subject in which some tact and consideration for those treating is helpful.
Got to run but just wanted to say hi. By the way.....I posted that "kickback" story about 3 years ago when it came out but at the time of the article it was claimed that the practice had been ceased.
Lunch is over, take care,
Willy
So far as getting flamed just remember that "the truth" is not always the same for alll people. Treating has saved many peoples lives. Treatment is often not kind to many people. I think where some people get into trouble is when the paint with a very broad brush and make sweeping generalizations like: "TX is poison".
For someone who has been struggling with trying to treat and suffering from sides hearing ultra negative treatment posts can be hard to take. It's all part of having HCV and about treating so it is a fair topic in my view but it is a subject in which some tact and consideration for those treating is helpful.
Got to run but just wanted to say hi. By the way.....I posted that "kickback" story about 3 years ago when it came out but at the time of the article it was claimed that the practice had been ceased.
Lunch is over, take care,
Willy
I agree that clinical depression and IFN don't mix. Personally, I was able to make it through treatment, but I understand that the type of depression you're talking about can be life threatening to a person using IFN. Since there are no treatments that don't use IFN, you're kind of stuck at this point, though it sounds like you are doing what you can nutritionally.
Good luck.
Good luck.
Welcome to the forum. You are more than welcome here whether you tx or don't. I hope you find the forum friendly and supportive. I have found the forum more than helpful for myself. I have to run out right now, but I just wanted to say hi to you and I do look forward to getting to know you.
wish you the best! btw I take the same supplements as you and a few more.
wish you the best! btw I take the same supplements as you and a few more.
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