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Is untreated HCV a death sentence?
I have read many posts from people that say if untreated you wll die of complicatons of HCV. That is not true. Only 5% get liver cancer and it's hard to tell the progression of cirrohsis especially if your lifestyle is healthy. I've had HCV for 40 yrs and only stopped etoh 2009. Stage 0-1. People are different. I work in a hosptal ICU, 8 years and have seen 1 liver cancer from HCV and the patient was a heavy drinker. All the HCV patients I see in the ICU with GI bleeds, cirr. are actively drinking heavily. I am not saying this virus is a good thing to have, I am treating currently. I just want people who want to wait for less toxic drugs not to bee so fearful if their liver can wait.
"I have read many posts from people that say if untreated you will die of complications of HCV... That is not true. Only 5% get liver cancer"
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Although it's true that it's a minority of folks with hcv that die from it, it's a very real risk factor that exists. Certainly folks are well within their rights to take their chances, but a healthy lifestyle is no guarantee. My husband has not touched a drop of alcohol in over 25 years, but the truth here is that he will still most likely die from complications of HCV and HCC. The unfortunate reality is no one can predict whose liver can wait and whose can't.
"Only" 5% is not a small number if you or your loved one is one of that 5%.
~eureka
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Although it's true that it's a minority of folks with hcv that die from it, it's a very real risk factor that exists. Certainly folks are well within their rights to take their chances, but a healthy lifestyle is no guarantee. My husband has not touched a drop of alcohol in over 25 years, but the truth here is that he will still most likely die from complications of HCV and HCC. The unfortunate reality is no one can predict whose liver can wait and whose can't.
"Only" 5% is not a small number if you or your loved one is one of that 5%.
~eureka
My husband has also not touched a drop of alcohol for over 30 years, and his liver damage from HCV progressed from between f1-f2 to beginning Cirrhosis between 2007 - 2010.
Advocate1955
Advocate1955
Hi Judy-
I agree that people should really consider waiting with more effective and possibly less toxic drugs being developed.
I don't really remember very many posts where people state that you will die if you don't treat, but as eureka mentioned if you or your loved one have progressed to that point the percentage is of little consolation.
-Dave
I agree that people should really consider waiting with more effective and possibly less toxic drugs being developed.
I don't really remember very many posts where people state that you will die if you don't treat, but as eureka mentioned if you or your loved one have progressed to that point the percentage is of little consolation.
-Dave
I also wonder if those statistics about the percentage of people who become very ill or die from HCV will increase as they track a larger group of us for longer. The progression of the disease is not linear, one of the reasons many of us on this forum in our 50s and 60s who have had the disease for a long time are experiencing accelerated progression and treating.
True, if left untreated, more will die 'with' it than 'from' it. But remember that we're living longer these days and the non-fatal complcations of HCV could make your remainig QOL relatively low. If someone were able to tell me "Your insulin resistance comes from carrying the HCV and your B12 deficiency and neuropathy come from the IFN." Or vice versa. Then I could give you an honest 'opinion' about the value of tx - in my particular case. But I don't know if the medical community have the knowedge or the resources to carry out that analysis yet. I know my wallet doesn't.
So we inform ourselves the best we can and make the decision that works best for ourselves.
So we inform ourselves the best we can and make the decision that works best for ourselves.
I agree that everyone with HCV is not going to die "of" HCV and many will die "with" HCV but "of" something else. But I also do not think HCV is benign (not saying anyone else does either) and I think HCV causes a lot of damage to the body that is not always attributed to the HCV and/or is not always noted or reported, especially in people who have not even been diagnosed yet.
"I also wonder if those statistics about the percentage of people who become very ill or die from HCV will increase as they track a larger group of us for longer." I agree with Dave on this and I have a feeling that those statistics may change.
I don't think people need to rush into treatment, especially if they have no liver damage. People with no or minimal damage have some options and can wait a bit longer. But for those of us who have already had some complications from HCV or who are creeping up in liver damage, and also creeping up in age, we need to make some decisions sooner rather than later.
I started treatment because I am Stage 2, Grade 2 and I have had complications from HCV in the past. I have no idea how fast the liver stages progressed since I was diagnosed only in July of this year. I don't know if I reached Stage 1 ten years ago or Stage 1 one year ago or how long it took me to progress to Stage 2. What I do know is that I am 65; I am not 30 or 40. I could have waited to treat until the next all oral drug regimen comes out. However, I might be 70 before that happens. What Stage will I be in then? Stage 3? Stage 4? Will I have some other disease by then that makes it difficult to treat or that prohibits me from treating. I have read posts on this forum by people who have progressed rather rapidly from Stage 1 to 2 or 1 to 3 or even to cirrhosis.
I think deciding when if and when to treat is a personal decision. There are so many factors involved. Having all of the data and information, including the risks of waiting and the risks of treating, helps us make informed decisions. I think this forum is great for helping all of us know more about HCV and treating HCV and to better be able to make those informed decisions.
"I also wonder if those statistics about the percentage of people who become very ill or die from HCV will increase as they track a larger group of us for longer." I agree with Dave on this and I have a feeling that those statistics may change.
I don't think people need to rush into treatment, especially if they have no liver damage. People with no or minimal damage have some options and can wait a bit longer. But for those of us who have already had some complications from HCV or who are creeping up in liver damage, and also creeping up in age, we need to make some decisions sooner rather than later.
I started treatment because I am Stage 2, Grade 2 and I have had complications from HCV in the past. I have no idea how fast the liver stages progressed since I was diagnosed only in July of this year. I don't know if I reached Stage 1 ten years ago or Stage 1 one year ago or how long it took me to progress to Stage 2. What I do know is that I am 65; I am not 30 or 40. I could have waited to treat until the next all oral drug regimen comes out. However, I might be 70 before that happens. What Stage will I be in then? Stage 3? Stage 4? Will I have some other disease by then that makes it difficult to treat or that prohibits me from treating. I have read posts on this forum by people who have progressed rather rapidly from Stage 1 to 2 or 1 to 3 or even to cirrhosis.
I think deciding when if and when to treat is a personal decision. There are so many factors involved. Having all of the data and information, including the risks of waiting and the risks of treating, helps us make informed decisions. I think this forum is great for helping all of us know more about HCV and treating HCV and to better be able to make those informed decisions.
I guess I haven't seen those posts other than from some of the obsessively paranoid types.
The information that only a percentage will develop into cirrhosis has been posted here many times as has the fact that others will die never even knowing the have hep C.
And its been repeated here many times that one should make decisions based on many things but most importantly the condition of their liver.
Your post is a bit insulting to those of us, like me, who wanted to wait for the new oral meds but could not.
The information that only a percentage will develop into cirrhosis has been posted here many times as has the fact that others will die never even knowing the have hep C.
And its been repeated here many times that one should make decisions based on many things but most importantly the condition of their liver.
Your post is a bit insulting to those of us, like me, who wanted to wait for the new oral meds but could not.
I just wanted to mention that judy is not close to being an insensitive person. I have experienced her compassion and empathy many times first hand. I am sure she her intent is not to insult or hurt anyone. She has been a good and kind friend.
-Dave
-Dave
It's 3% per year who get liver cancer. Sounds like a small chance but it builds up over the years. It happened to me and I was in great shape (better than the doctors). I absolutely thought I wouldn't be in that 3%. Haven't drank alcohol in nearly 20 years. I would treat, it's bad but not nearly as bad as HCC, etc. And you can always stop at any time. The treatment also gets harder with more side-effects the worse shape your liver is in. I went from stage 1 to stage 4 in a just a few years after having had the virus for 25 years.
I agree with Dave that Judy is very caring and sensitive and has supported me (and others) with her kind words. I don't see anything wrong with the post. It is just putting forth the thought that some people have options to wait and do not need to rush into treatment. New people coming on the forum should be able to hear all sides, pros and cons. Then they can make informed decisions.
"Is untreated HCV a death sentence"
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I could have easily answered the post, well, "Yes. It is for my husband."
Judy goes on to say:
"I work in a hosptal ICU, 8 years and have seen 1 liver cancer from HCV and the patient was a heavy drinker. All the HCV patients I see in the ICU with GI bleeds, cirr. are actively drinking heavily. "
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I do not think Judy was being insensitive, but perhaps her personal experience, or lack thereof, has not made her sensitive to those who do everything by the book and still have to die from it, and that hurts.
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I could have easily answered the post, well, "Yes. It is for my husband."
Judy goes on to say:
"I work in a hosptal ICU, 8 years and have seen 1 liver cancer from HCV and the patient was a heavy drinker. All the HCV patients I see in the ICU with GI bleeds, cirr. are actively drinking heavily. "
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I do not think Judy was being insensitive, but perhaps her personal experience, or lack thereof, has not made her sensitive to those who do everything by the book and still have to die from it, and that hurts.
Okay,
I'm sure she did not mean to offend.
I should have chosen my words more carefully.
I never got liver cancer although, at the time of my transplant, I was living on 8% of my liver.
The surgeon said I had about 6 weeks of life left~all because of HCV effect on my liver.
Cirrhosis can kill without cancer.
Currently being on treatment, and with my own personal history, I'm a bit sensitive about the subject, not to mention riba rage rearing its ugly head.
I'm sure she did not mean to offend.
I should have chosen my words more carefully.
I never got liver cancer although, at the time of my transplant, I was living on 8% of my liver.
The surgeon said I had about 6 weeks of life left~all because of HCV effect on my liver.
Cirrhosis can kill without cancer.
Currently being on treatment, and with my own personal history, I'm a bit sensitive about the subject, not to mention riba rage rearing its ugly head.
One more thing, I stopped drinking as soon as I was diagnosed and never had any bleeds, never was in the hospital prior to my surgery other than one trip to the ER for hepatic delirium.
I repeat, you don't need to get cancer for Hep C to kill.
Cirrhosis can do that all by itself.
And yes, I was one of the unfortunate few.
I repeat, you don't need to get cancer for Hep C to kill.
Cirrhosis can do that all by itself.
And yes, I was one of the unfortunate few.
HCV certainly does not need a poor life style and heavy drinking to do serious damage. Anyone of us could be in you and your husband's shoes. Anyone one of us could have or may need a transplant to survive some day like orphanedhawk.
Hopefully Judy know's that it does not take a poor lifestyle to get to this point and was speaking from feeling ill and being on treatment.
Hopefully you know how much we all care about you and your husband.
-Dave
Hopefully Judy know's that it does not take a poor lifestyle to get to this point and was speaking from feeling ill and being on treatment.
Hopefully you know how much we all care about you and your husband.
-Dave
My reaction was actually more akin to OH.
The original "question" and title really wasn't her question, was it?
Maybe she's so sensitive as to be fearful of making it a statement?
Judy apparently has her own opinion already to the question she posed, as exhibited by her text after the question... her intent may not have been to offend, but by the same token, her thoughts after the title makes the rhetoric a bit insulting.
The original "question" and title really wasn't her question, was it?
Maybe she's so sensitive as to be fearful of making it a statement?
Judy apparently has her own opinion already to the question she posed, as exhibited by her text after the question... her intent may not have been to offend, but by the same token, her thoughts after the title makes the rhetoric a bit insulting.
"Only" 5% is not a small number if you or your loved one is one of that 5%.
Enough Said!!!
Enough Said!!!
My hepatologist told me that if I didn't start treatment within the next couple of months....."you could be in serious trouble within the next two years". I guess there could be many interpreatations of his comment but I sure as hell don't want to find out due to non treatment. Anxiously waiting for Jan 13!
I realized after some of you posted that I had not read the comment thoroughly. I read the title and responded to other peoples comments without noticing the comment about people drinking and their life style causing their disease to progress. I am surprised by it honestly and should have read more carefully. I would have found it quite insulting also if I had read it. I suppose Judy will speak for herself and Dave should be more thorough before commenting.
Comparing illness and the attendant suffering from one person to another is dehumanizing and invalidating to everyone. I think of John Donne, Meditations XVII '(paraphrase)...each one of us is but a part of the whole...Ask not for whom the bell tolls, it tolls for thee." I am stage 0, gr 3; I chose to treat now while I was in better health, stamina, a younger(relatively speaking) age and most importantly to have this psychic wasp's nest from hanging over my life. I am thankful to be able to treat for 28 weeks; I often think of eureka's husband's experience-God Bless him for his patience and endurance with 100+ weeks of tx.
Just one more thing:
pcds and her personal experience in ICU doesn't speak to me personally a whole lot. Because intervention other than TP at end stage does not prolong life, most patients dying of ESLD or HCC don't go to ICU. Most likely when the time comes my husband will choose to spend his last days at home with loved ones rather than with strangers who know nothing about what it means to suffer with losing the battle to hcv. ~eureka
pcds and her personal experience in ICU doesn't speak to me personally a whole lot. Because intervention other than TP at end stage does not prolong life, most patients dying of ESLD or HCC don't go to ICU. Most likely when the time comes my husband will choose to spend his last days at home with loved ones rather than with strangers who know nothing about what it means to suffer with losing the battle to hcv. ~eureka
Just as not all people with HCV is druggies, not all people with cirrhosis or HCC is alcoholics.
"I have read many posts from people that say if untreated you will die of complicatons of HCV."
I don't remember "many" posts saying this is the case and if they did they would have been corrected by others here who know the facts.
"Only 5% get liver cancer and it's hard to tell the progression of cirrohsis especially if your lifestyle is healthy.I've had HCV for 40 yrs and only stopped etoh 2009. Stage 0-1. People are different."
What are you trying to say about liver cancer and cirrhosis?
Yes, people are different and not everyone will be as lucky as you. So why are you drawing broad conclusions based on your own case?
The fact is that most people that die from liver disease die from liver failure (ESLD) without HCC. Hepatitis C is the leading cause of liver transplants in the US.
Does everyone with hepatitis C eventually develop liver cancer?
No — in fact, most don’t. About 20 percent of people with hepatitis C develop cirrhosis — advanced liver scarring caused by decades of inflammation. Of those who do develop cirrhosis, about 20 percent eventually develop liver cancer. So overall, among all people with hepatitis C, the chance of developing liver cancer at some point in your life is about 4 percent. So what happened to the 20% that develop cirrhosis? You don't see them at your hospital so they don't exist?
"I work in a hosptal ICU, 8 years and have seen 1 liver cancer from HCV and the patient was a heavy drinker. All the HCV patients I see in the ICU with GI bleeds, cirr. are actively drinking heavily. I am not saying this virus is a good thing to have, I am treating currently. I just want people who want to wait for less toxic drugs not to bee so fearful if their liver can wait.
Your hospital is not representative of hospitals in the US. If the only patients you see with cirrhosis are people abusing alcohol while it may be true where you work, is not the common experiences at hospitals in the US. I personally have meet over a hundred patients with cirrhosis and End-Stage Liver Disease from all areas of the northwest US and I have heard of their experiences in hospitals small and large and the majority of them have hepatitis not alcoholism as the cause of their cirrhosis.Go to any transplant center in the US and see who the pre-transplant patients are. You may be surprised.
"not to bee so fearful" Have you ever seen someone dying of liver failure? That doesn't make you fearful to look like a concentration camp survivor (skin and bones), their body covered with bruises, with a huge abdomen, out of their minds with encephalopathy or in a coma? While the general public is shielded from such things surely you have see at least one person dying from ESLD.
"the progression of cirrohsis especially if your lifestyle is healthy."
Because I person has a healthy lifestyle will not prevent a person developing cirrhosis. Cirrhosis is caused by the liver being injured. This is what the hepatitis C virus does. The liver tries to protect itself which causes fibrosis which over time can develop into the complete scaring of the liver. I.E. Cirrhosis. This is basic 101 knowledge about how hepatitis C causes liver disease.
"I just want people who want to wait for less toxic drugs not to bee so fearful if their liver can wait."
All fine and good IF they can wait. But not everyone can wait. As all reasonably knowledgeable people know as liver disease progresses to stage 3 and stage 4 treatment becomes less effective. In fact the degree of advanced liver disease it the greatest factor in determining the rate of SVR. Not IL28b. Not race. Not diabetes etc. And of course there are those that decompensate and then it is too late to treat their hepatitis C in order to save their liver. What about them? You don't see them so they don't exist? Now 0%.
"Only" 5% is not a small number if you or your loved one is one of that 5%.
~eureka
Gee I thought I was part of the 1% should I feel lucky to be part of the 5% too?
Hector
I don't remember "many" posts saying this is the case and if they did they would have been corrected by others here who know the facts.
"Only 5% get liver cancer and it's hard to tell the progression of cirrohsis especially if your lifestyle is healthy.I've had HCV for 40 yrs and only stopped etoh 2009. Stage 0-1. People are different."
What are you trying to say about liver cancer and cirrhosis?
Yes, people are different and not everyone will be as lucky as you. So why are you drawing broad conclusions based on your own case?
The fact is that most people that die from liver disease die from liver failure (ESLD) without HCC. Hepatitis C is the leading cause of liver transplants in the US.
Does everyone with hepatitis C eventually develop liver cancer?
No — in fact, most don’t. About 20 percent of people with hepatitis C develop cirrhosis — advanced liver scarring caused by decades of inflammation. Of those who do develop cirrhosis, about 20 percent eventually develop liver cancer. So overall, among all people with hepatitis C, the chance of developing liver cancer at some point in your life is about 4 percent. So what happened to the 20% that develop cirrhosis? You don't see them at your hospital so they don't exist?
"I work in a hosptal ICU, 8 years and have seen 1 liver cancer from HCV and the patient was a heavy drinker. All the HCV patients I see in the ICU with GI bleeds, cirr. are actively drinking heavily. I am not saying this virus is a good thing to have, I am treating currently. I just want people who want to wait for less toxic drugs not to bee so fearful if their liver can wait.
Your hospital is not representative of hospitals in the US. If the only patients you see with cirrhosis are people abusing alcohol while it may be true where you work, is not the common experiences at hospitals in the US. I personally have meet over a hundred patients with cirrhosis and End-Stage Liver Disease from all areas of the northwest US and I have heard of their experiences in hospitals small and large and the majority of them have hepatitis not alcoholism as the cause of their cirrhosis.Go to any transplant center in the US and see who the pre-transplant patients are. You may be surprised.
"not to bee so fearful" Have you ever seen someone dying of liver failure? That doesn't make you fearful to look like a concentration camp survivor (skin and bones), their body covered with bruises, with a huge abdomen, out of their minds with encephalopathy or in a coma? While the general public is shielded from such things surely you have see at least one person dying from ESLD.
"the progression of cirrohsis especially if your lifestyle is healthy."
Because I person has a healthy lifestyle will not prevent a person developing cirrhosis. Cirrhosis is caused by the liver being injured. This is what the hepatitis C virus does. The liver tries to protect itself which causes fibrosis which over time can develop into the complete scaring of the liver. I.E. Cirrhosis. This is basic 101 knowledge about how hepatitis C causes liver disease.
"I just want people who want to wait for less toxic drugs not to bee so fearful if their liver can wait."
All fine and good IF they can wait. But not everyone can wait. As all reasonably knowledgeable people know as liver disease progresses to stage 3 and stage 4 treatment becomes less effective. In fact the degree of advanced liver disease it the greatest factor in determining the rate of SVR. Not IL28b. Not race. Not diabetes etc. And of course there are those that decompensate and then it is too late to treat their hepatitis C in order to save their liver. What about them? You don't see them so they don't exist? Now 0%.
"Only" 5% is not a small number if you or your loved one is one of that 5%.
~eureka
Gee I thought I was part of the 1% should I feel lucky to be part of the 5% too?
Hector
If the OP ever does get back to this discussion, I'd like to ask a few things, since her question seems more rhetorical than not, as she says at the end of her post that "I just want people who want to wait for less toxic drugs not to bee so fearful if their liver can wait."
1. So if you are Stage 0-1 why are you treating?
2. Are you fearful that your liver can't wait because of lifestyle?
3. Do you really think that people who have cirrhosis or HCC do because they are drinkers?
1. So if you are Stage 0-1 why are you treating?
2. Are you fearful that your liver can't wait because of lifestyle?
3. Do you really think that people who have cirrhosis or HCC do because they are drinkers?
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