People with extreme side effects telling others not to do treatment

[granitekonig]

I'm new on this board and have been doing a lot of reading. I've read every thread on here going back many pages. I keep seeing posts that are warning people not to do treatment because their life was completely miserable while they did theirs.
I can understand that treatment can be very difficult for some people, but I think it's IRRESPONSIBLE to the health of others to scare and warn them away from the ONLY treatment that works. It actually makes me angry. I don't know if anyone else feels this way. I'm getting ready to go on treatment and have read about all the side effects. I'm willing to take the risk. The last thing I need to read is someone saying that treatment is WRONG and people shouldn't do it. Writing to vent about your horrible experiences is one thing; Telling others NOT to do treatment is wrong. There are plenty of people out there right now who are riding the fence and trying to build up enough courage to do treatment as it is. We need more people to DO the treatment, not shy away from it.

[Deb_c430]

There are a lot of us who are doing treatment,    some of us more than once,  

We all respond differently to treatment,  for me the first two times were not so bad, I didn't feel great, but continued to  work and carry on. This time the drug is different, harder on my body.  

With that said,  every BODY is different,  we all have  different chemistrys, different attitudes, different concerns, that need to be addressed. Age matters,   preconditions,

Each person should  treat indvidually,  I think sometimes that more you read of negative sx, the more expect to get them, so do so.  But that is entirely my perception.  

Get the knowledge, learn to be strong advocate for your self.  Don't get angry find a balance, fear is something  natural to have we all go through it,    

Take care and best wishes,  and remember not all of us are negative.

Deb

[alagirl]

I think that its absolutely ok for others to share their experience with treatment, and to even give their opinion about the wisdom of treating, or of treating at a certain time (and I say this as someone who is fairly unabashedly pro-treatment).  To TELL people not to treat is giving medical advice.  

Sharing experience or encouraging someone to contact their physician for help with side effects and to ask for xyz, or to suggest they consult another doctor when we see someone whose treatment appears to us to be very atypical is appropriate I think.  But there does need to be a physician in there somewhere when we are giving tx advice.  

[jmjm530]

Offhand, I can't think of a single member -- regular member anyway -- who has warned people not to do treatment. If I've missed something, please point it out.

What I have seen, and been part of myself, is to share with others the belief that those with little or no liver damage do have options, and one option is what we call adopting a "watch and wait" strategy where we lead a liver-healthy lifestyle while being monitored by a liver specialist in the hope that newer drugs in the future will offer us a better treatment option. Sharing with others the concept of options, as well as sharing our treatment experiences, isn't "irresponsible" and in fact I think it would be irreponsible not to.

This place is for sharing information, personal experiences and advice. Hopefully your name (granitekoning) doesn't suggest that things are written in stone when it comes to treating (or not treating) hepatitis C. Cause they are not.

As to "We need more people to DO the treatment, not shy away from it", what I think we need are more people to make an INFORMED choice about treatment and not get scared into (or out of it) by anyone.

Good luck with your treatment. Hopefully you researched the pros and cons well.

-- Jim

[alagirl]

I could be wrong, but I honestly don't think he was referring to you.  

[can-do-man]

Said.......... I keep seeing posts that are warning people not to do treatment because their life was completely miserable while they did theirs.
---------------------------------

Could you please point those out? All the time ive been coming here i don't recall any members saying that. But then again i don't come here everyday........ Best to you

[jmjm530]

I'll also add -- and forgive the generalization but I only have your profile to work with -- that since you're a geno 3, you're much luckier than most here. You have around an 80% chance of being cured (SVR)with only 24 weeks of treatment. And if you become RVR (UND at week 4) you reasonably could shorten that treatment to 12 or 16 weeks and still have much better odds of SVR than for genotype 1's.

Genotype 1's, the majority of us, only have around a 40% chance of being cured with current drugs even if we treat for 48 weeks. That's a BIG difference in terms of risk versus reward compared to genotype 2's and 3's.

Now try this on --  right now there's a drug in trial for genotype 1's showing close to 60% response rates in only 24 weeks. Hopefully, that drug, Telaprevir will be on the market in a couple of years. Do you really think it's irresponsible to share an opinion that those geno 1's with little or no liver damage should consider waiting for these drugs? What would you advise a geno 1 friend with little or no liver damage? Would you give them both sides of the story or just tell them to treat?

[jdwithhcv]

Perhaps this is a response to a recent post that recommending doing tx only as a last resort.  I can't recall who started the thread but it was emphatic....

[zazza]

I must say I was surprised when I started treatment that it was not rougher, that it was doable. Had I understood that, I might have treated much earlier.

[jmjm530]

Ala:
I could be wrong, but I honestly don't think he was referring to you.
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I didn't take the post personally but since I can't remember anyone here universally warning people against treatment, I just assume he was referring to those who offer the opinion that Watch and Wait is a reasonable option for those with little or no liver damage and would be a personal choice. I do fall into that camp and personally did adopt a Watch n' Wait approach myself before treating.

[jmjm530]

I missed that post, thanks for digging it up. Everyone is entitled to their opinion, but that post is certainly not representative of the views expressed here and in fact is quite an anomaly. So when Granite says "I've read every thread on here going back many pages. I keep seeing posts that are warning people not to do treatment because their life was completely miserable while they did theirs" I still don't know what he is talking about as posts like Dixie's are so few and far between.

[rita863]

I can only give you my personal experience.  I am Geno type 1, I started TX Jan 4th, I was UND at week 12.  I am on week 41.  

I have had my share of sides, some mild, some really bad.  I have also worked through TX with taking some days off here and there.  I just recently cut my hours a bit.  

My personal thoughts are this.  Its my chance for SVR, so if I have given up one year of my life to be rid of this, then its one year.  I was able (with alot help from my friends here) to push through the hard times.  It like peaks and valleys... I have had a couple of weeks that were fine and then a couple that were terrible, and then back again.  

Some here have treated several times, and for longer periods of time.  They are the heros here, those are the post you should read.  Dont read the negative ones, you may be fine.  Some of my friends have very mild sides.

I would never tell anyone not to treat, in fact I have a brother who has hep c and will not treat. I give him informaiton, and tell him of the sides, but its his personal choice.

It seems you have read everything, and you are not walking into this treatment blind.  You have educated yourself and you know what sides may happen and may not.  You are one step ahead.

Best of luck with your TX.

peace
rita

[Trish77]

This is the thread that I would think was the most emphatic I've seen against treatment yet and not just suggesting "watch and wait" either, Jim....more like hang on by your fingernails to avoid treatment if you have to until you have absolutely no choice.  

http://www.medhelp.org/posts/show/655268

With a headline that says "Treatment worse than disease, last option only" .. I'm not too surprised to see this particular thread here.  Out of all the people who have SVR'd .. all the people who've been through treatment repeated times....does that sentiment actually apply?  "Treatment worse than disease, last option only"?  I'm not saying you agree with that sentiment, Jim, however it is the extreme extreme of "watch and wait" and to have someone post a balancing opinion to that, to me, is completely understandable.

I'm all for posting our experiences and that is that person's experience.  But to suggest it is like that for EVERYONE .. well, that is myopic.  I don't know if it's irresponsible, one person's treatment experiences are as valid as another person's.  However...if a person makes a treatment decision based on ONE thread .. when there are MANY threads from all points of view....that is downright.. well...lunacy.

There are many reasons that people treat with low level liver damage that are very valid to those of us who have and are doing so.  By the wording of that sentence, that obviously includes me.

There are many reasons those that have treated may fall into the "watch and wait" camp too.

Undergoing treatment is definitely an incredibly serious undertaking and I do agree that nobody should be scared in or out of treatment but should seek out enough information to make an informed choice.  That means not relying on doctors only as they'll provide information from the bias of their own position.  Many of us can attest to that on the part of our doctors.  

Trish

[Isobella]

I am guessing this is an instance of someone telling people not to treat.

http://www.medhelp.org/posts/show/655268

Unfortunately the person posting had some extreme sx.

I have to agree with zazaa, I am surprised that tx is not rougher.  I attribute that in part to everything I have learned here about managing sx and LOTS of luck.


Granite:   I don't regret at all deciding to tx. As a geno 1, grade 1 stage 0-I decided to enter a clinical trial.  I have another family member doing the watch and wait thing.  Ya just gotta do what is best for you in your life-if the damage level allows time.  And we are all here to support you on the journey :-)  I wish you the best.

Isobella

[zazza]

What is even worse than the thread Trish mentions is when newcomers with cirrhosis start a thread trying to decide whether to treat or not and they in response get a post like the above "treatment worse than disease, last option only", which could scare anyone from doing tx. I saw this happen recently, and to me it was totally irresponsible (if I dare to use that word again). Treatment might be bad for many of us, but thankfully it is only truly totally intolerably horrible for a few of us.

[jmjm530]

Trish: "Treatment worse than disease, last option only"?  I'm not saying you agree with that sentiment, Jim, however it is the extreme extreme of "watch and wait" and to have someone post a balancing opinion to that, to me, is completely understandable.
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A "balancing" opinion to 'Watch n' Wait" is to treat regardless of liver damage. Many, including our Doctor Dieterich, are in this camp and have expressed their reasons why. I've recapped them myself several times.

"Granites" post, however, is not a "balancing opinion" as you suggest. What he's doing is to criticize, and more important to *categorize" the opinions of others on the subject, as he calls them "irresponsible".

Read his post again -- he's not referring to an errant post, but appears to be referring to a category of posters who speak up in one form or another about some of the treatment risks.

[sfwandwow]

I see tx as its to each's own.. if u do thats great, at least if successful or not u are giving ur liver a chance to rest and re-generate overall.. so overall its base on the personal individual and there physician, we arent Dr's here.. we are just giving our own experience... i did relapse and i will try again down the road, its not a death sentence if u are 2 or 4 or whatever.. just trust ur physician and and GOD as ur comfort..

[portann]

Hi Trin,

I remember that post from DixieCups - she apologized sincerely in her follow-up post, as you mentioned, although I personally didn't think it necessary. I think it's great to hear her experience without censoring her, which you'd personally never do.  Granitkonig, on the other hand, seems to be gunning instead for censoring the negative. There is room for all points of view concerning our personal experiences with treatment. (Politics and real estate are separate debates!)

To Zazza:

Zazza: "I must say I was surprised when I started treatment that it was not rougher, that it was doable. Had I understood that, I might have treated much earlier."

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With all respect, Zazza, I must say I was surprised that treatment can be as rough as it is. I have a built-in positive outlook and tend to expect the best from life but whew.

Having had my deliveries (as in babies, both posterior presentations, turning in utero) with zero medication, dental fillings done with zero freezing, surgery with zero follow-up pain killers, I'm a bit impressed at how nasty SOC has been for me. For a girl, I've always had a lot of machismo when it comes to pain management but this is testing me and my SOC is not for a day or a month but for forty-eight weeks.

I'm glad it was better than you expected but for me it's worse.  I thought I could walk through the park on this one but I find myself instead occasionally wanting to jump off a cliff due to the unmitigating bone pain. Bad luck, maybe, I should have stuck to natural childbirth.

Now I wish I had waited for something new, better and shorter for 1A's, since I had that option, based on my liver condition. My advancing age made me feel desperate, so here I am, in week 21, SVR is far from a sure thing and if I had to advise a young 1A with little liver damage, I'd shout from the rooftops that he monitor his liver and wait for surer and quicker protocols.

For Granitkonig, it's different, since he's a different genotype with different and better prospects.

By the way, I survived natural childbirth by singing my way through the pain but it sure doesn't work for SOC, even when I sing 'Stand By Me'.

And I feel so lonely on treatment for a silly sunshine girl like myself. This was a price I never expected to pay.

[Trish77]

"Granites" post, however, is not a "balancing opinion" as you suggest. What he's doing is to criticize, and more important to *categorize" the opinions of others on the subject, as he calls them "irresponsible".

You need to re-read what I said, Jim.  

"Trish: "Treatment worse than disease, last option only"?  I'm not saying you agree with that sentiment, Jim, however it is the extreme extreme of "watch and wait" and to have someone post a balancing opinion to that, to me, is completely understandable."


I said it's not surprising to see a thread as Granite's posted as a balancing opinion to "that".... a thread titled ""Treatment worse than disease, last option only".  I didn't say he Granite's thread was a balancing thread to "watch and wait" .. unless you equate the "watch and wait" position with "Treatment worse than the disease, last option only" and, correct me if I'm wrong, regardless of how strongly you feel about "watch and wait", not even you would go THAT far.

And I will say this from my own perspective.  I put in alot of time and weighed out my options in very much depth before deciding to start treatment with low liver damage and I do not regret my decision.  Where I am at now at Week 32  with a list of drugs that boggles my mind and having to juggle three different injections a week and bottles of various kinds lined up on my fridge, managing which ones get taken on an empty stomach, which with food, which in the morning, at night, on specific days... one month ago, I was NOT in this position and now I am.  I do have a new respect for the "watch and wait" position even though I do NOT regret my decision to treat with early stage liver damage for all the reasons I went into this now in the first place.

I think we ALL agree that being as well informed as possible is what is important and respecting someone making the best decision for THEM  with their OWN variables .. not OUR variables...is what is important and helping people with the information they're looking for to make those decisions and then supporting them is also important.  Don't think any of us disagree on that.

Trish

[zazza]

See how different our experiences can be! I had problem getting through childbirth WITH medication. Give me treatment anytime compared to the horrors of giving birth! OK the result of giving birth makes it worth it.

[jmjm530]

I just re-read ""Treatment worse than disease, last option only" and what I found was a very sad and heartfelt account of one person's treatment experience and based on that a heartfelt warning to others. I respect the posters right to say what he did and let me ask you -- if you had the same experience as the poster, wouldn't you have felt compelled to post the same?

My pik with "Granite's" post again, is that it is not a "balancing" post as you suggest. It's simply a post criticizing people for posting their experience and opinions.

[portann]

Granitekonig: "The last thing I need to read is someone saying that treatment is WRONG and people shouldn't do it. Writing to vent about your horrible experiences is one thing; Telling others NOT to do treatment is wrong. There are plenty of people out there right now who are riding the fence and trying to build up enough courage to do treatment as it is. We need more people to DO the treatment, not shy away from it."

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Your opinion is only that, your opinion and my opinion is that I find you rather immature to newly arrive here, stand on a pedestal and condemn members for sharing their experience as they see it.

You consider it 'irresponsible' to shy away from treatment. My own hepatologist, who has treated heppers exclusively for over twenty years, is against patients treating except if necessary. He was against my treating.  Is he irresponsible?  Given that newer and better protocols are around the corner and the outcome at this time is too uncertain in many cases,  should he have censored his point of view from me? Is there no room in your world for his point of view but only the one you want to hear?

There is a video that you might like on another website. In it, the actor is dressed to the nines, smilingly serving an elaborate  breakfast he just cooked for his children. Of course, he's on interferon and ribavirin, just sailing through joyfully. I sincerely hope that this is your experience.

[aptec]

I'm reasonably new to the board too, and was also surprised to read so many posts so avidly recommending against Interferon treatments, or even suggesting that 'X' (insert alternative medicine of choice here) could cure us of our shared virus - and not incidentally cure AIDS, cancer, and the national debt.

Does it matter to me if someone decides not to treat themselves with Interferon or chooses instead to treat with herbs and yoga?  No.  It's a lamentable, but personal choice.  Does it matter to me if someone recommends someone else not to treat with Interferon but to use traditional Chinese nonsense and colloidal silver?  Absolutely.  Even with the best intentions, such a recommendation carries the moral consequence of directly contributing to the health of another - and in the case of 'alternative' herbs and spices over Interferon, with possibly debilitating or deadly results.

Most of the people posting on the forum are either about to start Interferon treatment and worried about side-effects, in treatment and looking to alleviate side effects, or post-treatment and still have questions.  Most people who reply to posts offer genuinely useful advice, or tell about their experience of treatment - which is why this forum is so useful.  

Is Interferon treatment 100% effective?  No.
Is it risk-free?  No.
Does it have side-effects?  Yes.
Is it the only game in town?  Yes.

Will quack/alternative/integrative/complementary 'medicine' kill the Hep virus?  No.  Some of it is innocuous and may alleviate some symptoms of the disease.  Some of it will flat-out kill you if you use it in place of conventional medicine.
Is quackery risk free?  No.
Does quackery have side effects?  Yes.  

Anyway Granite, welcome to the board.  The members are a strong bunch by and large - you just have to keep a weather-eye open for the occasional kook that happens along.

[epiphiny]

This is thread is fascinating and this topic sure does bring up a lot of heated discussion!!  

I am not sure what I think about the watch and wait scenario.  I did that for 14 years after I was dx'd with HCV and when I look back I wished I had started treating sooner.  The facts DO support treating earlier rather than later, despite what may, or may not, be in the pipeline.

It also comes down to quality of life, does it not?  For me, I know HCV impacts on my daily life no matter how hard I try to live the healthy lifestyle.  Despite being a non-responder to SOC 5 years ago, and having to cope with the associated feelings of disappointment and sense of failure, I did find that my general well being and energy levels were greatly enhanced after tx.  I started to feel things slip away from me again about 6 months prior to starting this last round of tx.  That propelled me to treat again, despite knowing I was in for a tough ride, as I believe I had had a taste of a better life and I want that ALL the time!

There's a lot of discussion here about the long terms effects of the current treatment protocols and much hope is held out for the new drugs in the pipe line but in truth, those drugs are so new that we have NO IDEA what the long term effect of those drugs are!!  It's a case of the devil you know or the devil you don't.

I am pro-treatment, having spent the last 14 years waiting for the miracle cure.  I don't know how long I am going to live, will I be hit by a bus tomorrow, will I live to 84?  But I do know we only have THIS life to live right now (that we can remember, anyway!) and I want to do all I can to enjoy it.

We can't tell the future and we can't live in fear, we have to do what we believe is right for right now...  And we have to allow others to make their choices and then support them in their journey.

After all, that's why we are all here, right?

Epi x

[Trish77]

You're still not reading my posts the way I intend them.

Jim "I respect the posters right to say what he did and let me ask you -- if you had the same experience as the poster, wouldn't you have felt compelled to post the same?"

Frankly Jim...no.  I would not have felt compelled to post the same.  And that is the honest truth.  I would hope I'd have the cognizance to understand that Mikkimoe's experience is not nygirl7's experience, is not Trish77"s experience, is not jmjm530's experience is not Isobella's experience, is not zazza's experience and on .. and on....and on.  I have tried very hard to appreciate that each person's experience with treatment is as individual as they are, each with their own respective responses to treatment, their own issues and that MY treatment does NOT decide how everybody else's treatment will be.  So in answer to your question again...I sincerely hope that I would NOT allow my own experience to colour me to such a degree that I propose that everyone should make their treatment decisions based on MY treatment experience.


My pik with "Granite's" post again, is that it is not a "balancing" post as you suggest. It's simply a post criticizing people for posting their experience and opinions."

Once more...I will repeat.  I did NOT suggest Granite's post was a "balancing post" *period*.   You are again miscontruing my point even though I said to you already that I suggested his post was a balancing post to the thread ""Treatment worse than disease, last option only"  ONLY, Jim.  Not a balancing post to "watch and wait" or in general... but to. that. thread ""Treatment worse than disease, last option only".  This is the second time I've said this now.  And if it's not clear enough this time, I'll leave it at that.

And I'll leave it at this anyway as I respect you too much to continue with this and I don't wish to spar with you.  So this is my final post on this subject and I'll conclude on this thought that I've already posted:

"Undergoing treatment is definitely an incredibly serious undertaking and I do agree that nobody should be scared in or out of treatment but should seek out enough information to make an informed choice.  That means not relying on doctors only as they'll provide information from the bias of their own position.  Many of us can attest to that on the part of our doctors.   "

Respectfully,

Trish

[fretboard]

Yeah, to be honest with you I kind of appreciate a truthful rant on a tx experience even if it was horrendously bad.  At least that way you know the truth and that not everyone's tx is gonna lead to a happy ending.  I've talked to quite a few ppl on here who ended up having terrible sx's.  That doesn't sway my decision to tx anymore as I've put it off for as long as I feel I can.  With that said, after a person tells about their horrendous tx experience they surely don't have to say something like don't tx until your on your death bed or anything to that affect.  That's called overkill!!  later

[geterdone]

HA!!!

[Trish77]

Thanks for the respectful comment, Jim.  

[geterdone]

Some times too much information is worst than the treatment. Simplicity is everything, if you have no other medical problems or are at risk, just go for it. If I had really, really thought about all the aspects of treatment and especially the meds and the ramifications of them I probably would not have started treatment. In stead I took the simplistic approach. The Doc said you should start thinking about treatment, I said ok and the next thing I knew I was sitting in his office and sticking myself with a needle and that’s the last thing I remember until about six months ago, it’s just as simple as that.

jasper

[jmjm530]

Trish: Thanks for the respectful comment, Jim.  
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Well, thanks for your respectful comment. I usually just get slapped :)

[Isobella]

The forum goes thru cycles...I remember when I was a newbie deciding whether to treat or not someone saying "come on in, the waters fine"  I dove in head first with eyes wide open after that.  

[portann]

Arigato. Your comments - nonsequiturs - speak for themselves.

[jmjm530]

ap:  Is there a longevity requirement that I don't know about?
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The requirement, if you want to call it that, is that if anyone thinks this place is anything but pro treament -- and understandably so --  then they obviously haven't been around long enough. That doesn't mean, however, that balancing out the discussion should  be suppressed which is what I still think the original post and some of the discussion is really about.

As to the" advice of an idiot touting 'alternative' cures" these types of post are in the very minority here and are rightly shouted down every time. Again, anyone who has been around here any length of time knows that. In fact, these posters serve a positive purpose because they help educate new people to dangerous treatment approaches in an environment where they will hear the opposing view.

-- Jim

[DoubleDose]

Thanks so much for both of your opinions and counter- opinions, and interpretations of your opinions.  I have enjoyed reading them.  Gee, opinions can be fun!

DoubleDose

[Andromedae]

I hear you :)
This is the first time that I have posted in 3 months.  I left this forum as an active participant because my impression was that too many people were focused on being (and possibly staying ) sick.  In all fairness you will find that tendency on any medical forum of this nature  I'm focused on being healthy.

Here is my experience.  Geno 1a started treatment in June. I cut out ALL bad things (cigarettes, coffee, fatty foods, etc)  I went RVR (undetectable) in 4 weeks.  I am now on week 18.

Treatment is hard and I am greatly fatigued.  I had to go on temp disability.  But it's worth it  because I have no detectable virus in my blood and am no longer infectious because of that PLUS the virus is no longer destroying my body.  I'm on track for an 85% chance of a permenant cure in 6 more months.

So it's pretty hard , yes .  But in my opinion absolutely worth it.

You will find people telling you that you are never cured.  You will find people telling you that treatment is impossible.  It's all BS.  Just do it.  Do the best you can and don't listen to any negativity.  

Anyone's best chance to remain healthy is by getting treatment.  That's the bottom line.

[jmjm530]

It just occured to me that my last couple of posts may have been construed to be disprespectful. Actually, I was just trying to lighten up our discussion by making a self-deprecating kind of joke and hopefully you now understand that. As always, I respect your opinions as well as your treatment journey.

DD, I have no idea what you actually mean, above, but hope this finds you well.

-- Jim

[Trish77]

Thank you for that, Jim.  Very few people have anything good to say about their exes and being told I remind you of ALL your exes, well, I gotta admit, initially that comment stung.  I DO see the self-deprecating comment instead now that you present it and yes, I now understand that.  Thank you.

DD, I think I know what you mean and I am weary of such things so I too prefer to simply wish you well.

Trish

[jmjm530]

I missed the part where I told you treatment was h*ll and not to treat at any cost :) Good dig, wish I was that organized.

-- Jim

[portann]

Trin, what I get from your account last year is that you're now 56!  Baby girl.....

And your post about Jim's reply prompted me to check his profile. Hey, he's posted over 15,000 times.

Trish, I know it may have stung  - the ex-girlfriend stuff - but Jim was just doing his Seinfeld comeback and thinks the world of you. I love when he's on the board.

[aptec]

"The requirement, if you want to call it that, is that if anyone thinks this place is anything but pro treament -- and understandably so --  then they obviously haven't been around long enough."

YOUR requirement do doubt.  

My comments aren't intended to "suppress" any kind of comment - pro- or anti-treatment.  They ARE intended to discourage posters from advising the use of quack 'cures' in place of proven treatment protocols, all based on anecdote and a couple of hours cherry-picking the web (research!).  By all means treat yourself with anything you like AND share your experiences here with us, but to recommend nonsense to vulnerable people is irresponsible - which, unless I'm mistaken, is pretty much in line with your position.

[aptec]

"Your comments - nonsequiturs - speak for themselves."

Your comment is meaningless.

[portann]

Domo arigato...you sure haven't adapted to Japanese culture, have you? You're just bumping into everyone. Last I heard, Jim was recommending bellydancing or am I imagining that due to OCD?

[Mr Liver]

For every poster that comes along occasionally with a story detailing their negative tx experiences there are at least 10  in this forum who don't hesitate to scare others with the mention of liver cancer, or the need for a transplant if tx is not chosen.  One member states regularly that if tx is not undertaken then they will suffer a long and painful death if cancer doesn't get them first. Ironically, many of these scare tactics come from SOME who shouldn't even be treating themselves, let alone trying to convince someone else to. I suspect a good many of them rushed into tx and now have to somehow justify their rash decision by getting others to join in it with them. Everyone loves to have their actions validated now don't they ? And misery does indeed enjoy company....

And as for that tired ,old, lame, worn-out and incorrect reasoning that watchful waiting decreases odds of SVR, let me say this:  I would like for one of those who exclaim this here in this forum (you know who you are) on a regular basis to provide any research which states lower odds of any significance between those who treat at F-0, F-1 or F-2. Or lower odds if someone treats at age 52 instead of age 58. If no one can provide such research perhaps a modification of scare tactics for those who are against a watchful waiting approach would be in order. By the way, the time between F-0 thru F-2 can be as long as 40 years. And please no replies telling me of extremely fast fibrosers. I've read all about it. In these rare cases this is where the 'watchful' part comes in.

Liver cancer is a common scare tactic that many llike to employ here in their biased replies. The rates of HCC according to the research are averaged at 3%.  Now, keep in mind that not everyone who is diagnosed with HCC dies from it, so that percentage is lower if used to express mortality rate.  There are many methods used to eradicate or negate the presence of liver cancer. HCC appears in those who have cirrhosis. Its a damned long ways from F-0,1, or 2 to a cirrhotic state. Again, this is where watchful waiting plays a part. Only one in five will progress to the stage where cancer is even a concern, and then only 3%  of those in the remaining much smaller group will ever have it. The way some people here carry on about liver cancer you'd think you could catch it like the common cold.

As for extrahepatic manifestions which are regularly used as a reason for a decision to treat or convince someone else to, the facts do not support this as a valid reason to expose yourself to toxic medicines. Extrahepatic manifestations are not seen in the vast overwhelming majority of those with HCV until stage F-4 is reached.  A compensated liver by definition is performing the tasks it is intended to with enough proficiency as to not create extrahepatic manifestations. you are F-0 thru F-3 and think you have extrahepatic illnesses I would carefully check those out. You may be blaming HCV when you shouldn't be, and as a result you may be unaware of the true underlying cause of your ailment for which treatments may already exist. On this note it may help to be reminded that as we age we get more aches and pains in muscles and joints, we don't leap out of bed in the mornings anymore, and we take more naps (remember when you were young and it took a threat to get you to take a nap ?), and we tire more easily. Don't be too quick to place the blame of illnesses on HCV.

I have repeated this here many times and will continue to do so: Treatment should be undertaken ONLY if it is necessary or appropriate. I have always said that people will differ where those lines are to be drawn.

Humans should avoid interferon and ribavirin as long as possible . With all of the research and documentation this really should go without saying. However, tx should only be avoided as long as there are no significant ramifications from delaying it.  And, if someone has decided to adopt a 'watchful waiting' position then this point in time will be easy to determine without risk to the patient. IFN/Riba is a last resort as others besides myself have stated. A watchful waiting approach has never been more viable as a strategy as right now with so many newer drugs showing the promise of more efficacious (much better SVR rates) and SHORTER therapies.

Psychotic events are not common while on tx but when they occur they can be potentially life-ending, and almost certainly life-changing.
It can be an extremely frightening and dark experience. Someone who goes through a major depressive episode that progresses to psychosis will tell you that they wouldn't wish it on their worst enemy. Some who have gone through this naturally feel compelled to warn others. It doesn't matter to them how long the odds may be for this to happen to others. Their point is that it CAN happen and this deserves to be recognized by all before they treat. You cannot paint a complete picture of tx without including the casualties and the chances of you becoming another one as a result of treating.

I appreciate those who have come forward with a very personal part of their life and shared it with us. Their stories belong right along side eveyrbody else's who has gone through tx. They may represent a small group, but their tx experience can happen to any of us and this is more than appropriate  to bring up considering the forum we are in.

Let's try to keep everything in its proper perspective while at the same time encouraging others to share their stories with us regardless of content. If anyone thinks they are hearing too much about the negatives of tx perhaps they should ask themselves why.

Mr Liver

[alagirl]

I personally don't find Granite's post objectionary.  There have been a couple of posts lately that I worried would warn people away from treating (not yours Jim, btw).  One of them even SAID "warning warning" under the title.  It annoyed me also.

I don't get personally why people would risk more damage to their body from hcv - to the heart and vascular system and kidneys prior to treatment and it wouldn't be my personal choice to wait to treat.  Who knows, maybe two years, yes, but not ten years while I waited for interferon to become outdated.  That is MY personal opinion and viewpoint for my own health.

Everyone has different things that are important to them in terms of tx and their health and what anyone else chooses to do about tx is their own business.  I just think that a post shouldn't come too close to "telling" others whether or not to treat, particularly without advising them to check with their physician first.

Also, one of the most annoying things when I first arrived here was the thought that there were some people who didn't think I'd been here long enough to express an opinion.  Hell, there are STILL some people who feel I didn't suffer with hcv long enough to express an opinion - that I am too "new" to the disease.

This is a forum for people with hcv and their family members also and everyone has an equal right to post.

My treatment was NOT easy and it did leave me with arthritis and possible peripheral nerve damage.  Still checking that last one out.  But I would do it again tomorrow.  Even if I had found out I had chronic hcv and not acute.  Those are quality of life issues and for me, longevity trumps quality of life.  I have a high tolerance for dealing with random medical issues and being able to work them into the rest of my life when quality of life is what they affect.  But feeling that quality of life trumps longevity is also a valid point of view, and one that many hold.  And to have some mixture of the two, or to hold some other viewpoint regarding the entire risk/reward equation is valid as well.  And... I think that's about all I've got for now.

[alagirl]

Humans should avoid interferon and ribavirin as long as possible . With all of the research and documentation this really should go without saying.
------------------------------------------------------------------------------------------------------------
This is an OPINION.  All of the research and documentation does NOT say this.  HCV can and does cause issues in other systems of the body prior to F4.  At least give us some cites for your info if you are going to claim research backs it up.

[PegOnPeg]

It was my first "dr", a GE, who scared me with end stage liver disease, liver cancer, liver transplant...I swear...he was spewing all that garbage while I was still in shock from finding out I was G1..

Never, in my wildest dream, would it occur to me to not treat.  With bx of Stage 2-3, I didn't have much choice...but...for ME, even if my liver were in better shape, I'd treat...as soon as I could. I want this poison out of my body.

I've read all the posts, too...I haven't been scared off. I am educated, and everyone has an opinion...well, you know what they say about those...

There are some very bitter ppl out there and sometimes, they post to this forum.  I can easily make up my own mind about my course.

[aptec]

"Domo arigato...you sure haven't adapted to Japanese culture, have you?"

Twenty five years of living in Japan gives me the ability to comment on it - you're only displaying ignorance.

[portann]

I noticed in your recent post that you said:

"I'm male, 58 years old.  I've been in treatment for 18 weeks out of a total 24 (6 to go, yea!) and undetectable since around week 12."

I assume you were undetectable at week four. Is that correct? Or was the protocol to not test viral load until week twelve?

[aptec]

The latter.

[Mr Liver]

"All of the research and documentation does NOT say this."

Never said it did. And I don't give citations for statements that I haven't made.

"HCV can and does cause issues in other systems of the body prior to F4. "

I never said it didn't.

"I don't get personally why people would risk more damage to their body from hcv - to the heart and vascular system and kidneys prior to treatment "

You obviously chose to ignore the study I posted to you which was recent and very thorough.  Since you said you were interested in the topic of HCV and heart diseases I thought you would appreciate a well-detailed study  that was much more recent and thorough than the ones you posted about cardiomyopathy,etc.  It may be helpful for you to go back and read your drug inserts (both) about heart problems caused by the tx meds. These are heart conditions in addition to some of the ones detailed in the research study that I posted which can be caused by treatment.

There is a reason HCV is known as the silent killer. In untold numbers of cases HCV was discovered as a result of an extrahepatic manifestation. In a number of these cases it was  found that the patients already had advanced cirrhosis. Hence the term.  If you have an extrahepatic manifestation early on in the disease course this can alert a doctor to the possibility of HCV being present which can prevent a scenario as I just described from occurring. If only this was the rule rather than the exception. The VAST MAJORITY of people with HCV will experience no extrahepatic symptoms until late stage disease (F-4 +). The VAST majority of those with HCV will remain asymptomatic their entire lives.

"APPROXIMATELY 1%-2% OF HCV-INFECTED INDIVIDUALS WILL DEVELOP EXTRAHEPATIC MANIFESTATIONS".    http://www.medsci.org/v03p0047.htm

"Complications that do not involve the liver develop in 1 to 2 percent of people with hepatitis C; the most common is cryoglobulinemia" - http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/#b

And you must have not seen the sentence after the one you cut and pasted so let me provide you with it here:

"However, tx should only be avoided as long as there are no significant ramifications from delaying it." - Mr Liver



  

[IAmTheWalrus]

"By the way, the time between F-0 thru F-2 can be as long as 40 years. And please no replies telling me of extremely fast fibrosers. I've read all about it. In these rare cases this is where the 'watchful' part comes in."
--------------------------------------------------------------
It may be as long as 40 years, but how short can it be? That is the question. It depends on individual circumstances. Just because HCV progresses from F0 to F1 in 25 years doesn't mean that it will continue at a rate of 1 stage/25 years. As a mathematician you know this is not a linear progression. I have to say that I went from F0 to F1 in about 30 years, and from F1 to F4 in a little over 5 years. After transplant, I went from F0 to F2 in 9 months. Not everyone has 40 years to mull this over.

I have never tried to scare anyone into treatment. I have just shared my personal experiences, which are pretty germain to the topic. If my "waiting" was not watchful" enough, it points out that some or many hepatologists, not to mention GPs, go the wait-and-see route for geno 1 patients, rather than the knee-jerk rush to TX that has been often implied.  All of the docs I had seen erred on the side of no TX and not much watching, either. I am not a doctor, so I took their advice. I think it is more than justified to be a little proactive on these issues. Waiting can be dangerous. I think a competent hepatologist is needed to tell, and even then, they need second-guessing. The downside to missing the TX window far exceeds any of the problems I have experienced on 66 weeks of Peg+Riba.

I have not really seen much posting in the way of scaring people into treatment. I see a lot of posts from people who are scared about TX and think it is a living hell that will ruin their lives, or at least a year of it. I have seen a lot of posts excoriating the effects of TX in order to convince people not to TX. Granted, these posts are usually from someone connected with the spamming of an herbal product, but this is even more egregious as it prevents people from seeking needed medical attention.

I am very respectful that the decision to TX, or not, is very individual. To try and make a general case that TX is good or bad does not seem appropriate, not that I think you are doing this. Many are looking for that simplistic answer, though. It should not be dumbed down on either side of the issue because it is not simple. I think you agree with this.

Sorry to seem scary, but these are some facts I know first-hand and I can't ignore them. I would much rather see someone err on the side of TXing too soon than too late. It makes me cringe when I hear that some poor schmuck is told by a doc that he'll "Die with the disease, not from it."  That is exactly what I was told. Maybe, maybe not, but that statement cannot be used as a panacea. What they should say is "This may not kill you" or "You may die from something else before this kills you". These are more accurate statements. Personally, I would rather die from something else. I'll take those chances.

I am a little wound up bout this, but mean no offence to anyone, especially not you. I just need to get it out sometimes. I guess I still have a little lingering anger at having missed an opportunity to save my original equipment.

Brent

[Trish77]

You make your point as if that's a no-brainer, a one-size-fits-all approach to treatment, the very thing that should NOT be done here, to suggest that one person's decision about treatment, because it is well thought out for YOU...then must naturally apply to EVERYONE.  The same as one's treatment experience does not apply to everyone and to suggest that one should make decisions about treatment based on one person's treatment experience is just as irresponsible and obtuse.

One of the things I considered when treating early was the bell curve that shows the co-relation to age and the marked increase of fibrosis past age 40 along with the length of time one has had the disease and how much borrowed time you're working with.  One of the presentations I viewed that included this information was from Dr. Dieterich himself.   I will simply say your point of view is your OPINION, which of course you will say is fact, and YOUR interpretation of the data, which you will say is fact, when there is also much data out there that presents the benefits of treating early.  For you to deny that would truly show your bias.  Data exists and you should know that.  Whether you choose to ignore it or not is another matter entirely.

Having said that, I see benefits to both ... treating early and waiting to treat.  There is no doubt that interferon is a nasty drug and it needs to be held in proper respect for what it is capable of doing to a person.  It also needs to be held in balance that what it CAN do is not what it DOES do to EVERYONE.  

What the "watch and wait" group doesn't SEEM to take into account are all the other kinds of factors such as those that came into play in MY decision.... factors such as could I accommodate treatment IF my situation deteriorated at any time in the next five to ten years and I decided I would be far worse off to wait from a socio-economic point of view with regards to my career path, my relationship status, my mental and physical health and my financial status.  

Deciding to do treatment is taking a year at least out of a life and that means more than just the effects of the drugs.  One of the biggest factors in success of treatment is adherence.  If those socio-economic factors are not considered when making a treatment decision then adherence becomes at risk when they come into play DURING treatment.  For myself, I didn't enter into this lightly and felt that my life as a whole could best accommodate such a serious undertaking with all the physical risks I was aware of to the best of my researching ability at the time.

I do NOT agree that one should always put off treatment until one's damage is advanced, that that is the rule of thumb.  Nor do I think one should always treat early.  I have posted as much and that people have options and I was gratified to get a private message from someone who said..."your post indicates I have options based on my biopsy result" after being told by their doctor that they should be treating asap.  Nothing burns me more than that...someone being rushed / scared into treatment without being made fully aware of what they are getting into.....or someone being told they don't need to treat right now without their options being fully explained to them.  This should be a matter of a complete, informed personal choice and nobody should be told that one way is superior over the other, it is a matter of personal choice based on the factors that exist in one's own life and the choices one wishes to pursue and the risks one wishes to take.

I decided not to risk that bell curve, not to risk having this disease any longer than the 23+ years that I'd already had it, decided not to risk that I could be in that percentage of persons who deteriorate and then have to go into treatment within the next 5-10 years and impact my career right at the point that it should be flying uninhibited when I could afford the break in my work life now if treatment got rough.

There are reasons for both and I wish people would simply respect that instead of telling people one way or another makes perfect sense for EVERYBODY.  

Trish

[Trish77]

Sometimes I feel that people post against treatment simply due to how brutal it was for them and they lost much more than they expected and don't want other people to suffer.    While I can understand that sentiment, it's like my friends scaring me off from motorbike riding because they know someone who got badly hurt or worse or any other number of things where some people had terrible experiences and their perspective is permanently skewed.  

I think there are some in the "watch and wait" camp who have never treated who simply have a healthy respect for what these drugs CAN do to a person and we all should have a healthy respect for that.  

I favour choice, however I've had my position questioned before...even though I've been known to tell various people they have time to consider their options and to suggest they might want to hold off a bit until their life situation makes treatment more amenable.  

Sometimes there is a "if you're not fer us, yer agin us" kind of attitude and that's regrettable.

[desrt]

I have to agree with Mr Liver that the hysterical, treat-at-any-cost mentality is much more common on this forum than the occasional anti-tx posting we get here. Two years ago I witnessed someone whose personal and family history of psych problems suggested she probably shouldn't try SOC get guilt tripped and browbeaten into treating.
She had a hard time. She didn't clear. She no longer posts here. Many of those who pressured her into tx are still here.
Everyone who posts their honest experiences here at least opens up a discussion on certain aspects of tx.

[DoubleDose]

my opinion:  If you are bothered by having HCV, and hate having a chronic virus, or if you have advancing fibrosis, or if you feel lousy, and do not function normally, or if you want to be in relationships and be totally uninfected, etc....then you most likely should consider treating.

If you are stage 0, and have no discernable problems, and have no issues with having a chronic virus....you potentially could consider waiting for better treatment options...as long as you also have regular medical monitoring and periodic biopsy.

This conversation may become more moot as the newer cocktail treatments come on-line.  Hopefully in a few years or more we will have highly effective, and minimally damaging treatments of much shorter duration that will make it an absolute no-brainer in deciding whether to treat.

In spite of all the interferon related after-effects I have dealt with, my decision to treat (twice) and get the SVR, was the right one for me.  I would do the same thing again.

And yes, my comment above was exactly what Jim did not know that it meant, and exactly what Trish did know that it meant.  I've been in this sort of thread before, I believe...if my memory is still in working order......and now I read these threads.  Kind of a 'read only' program approach.

Best wishes to all of you.  I am still at it, having fun, working and enjoying...trying to eat less, and exercise more...and looking forward to eventual retirement in six years or so....and warmer weather. Hopefully we will still have an economy and a financial system when I get there.

DoubleDose

[nygirl7]

"Yes, I understand but there are some in the "watch and wait" camp who have treated, several times unsuccessfully.  Why should it have been the right thing to do back when they were trying to eradicate the virus and now it's watch and wait."

BING BING BING YOU GET THE GRAND PRIZE!!!!!!!!!!!!!  I do not understand the logic of this at all - and saying "well if I knew how difficult it was going to be after treatment" is just a cop out too. It's NOT that way for everyone so why discourage somebody else?  

I had EXTREMELY horrific sides and yet would encourage ANYONE to try and get rid of this disease BEFORE they are stage 3 and almost out of watch and wait wiggle room.  What if that treatment fails and they need to pursue other options? Should they wait until it's too late?  That to me is just supid.  I WISH I could have treated when I was stage 0 or 1 and just saved my liver all the damage I could have.

[Trish77]

Trinity: "Statiscally, regardless of what some say, 56 years old with stage 3 puts me at the top of the list for cirrhosis. Now why would I wan't to wait?  Why would I wan't to function with a half a-s-s liver?"

Whoa Nelly. :)  Respectfully .. I do believe that "watch and wait" approach would put you squarely in the "it's time to treat" phase of that.  I don't think anyone in the WaW group would tell you to keep waiting.  I really do think that approach speaks more to those of us who are lucky enough to have early stage liver damage such as myself who find out early enough to have options and who went into treatment as a Stage 1, Grade 1.  

Again....I wish people would simply respect where others may be coming from on this.  I can understand the "watch and wait" approach much more with the way my treatment has gone and it really hasn't gone that bad compared to many.  It has simply been very sobering lately as to what it COULD be on these drugs.  And I also very much understand why people would treat with early stage damage, particularly since I'm doing that.  

I just don't want to see EITHER approach shoved down anyone's throat as if it's the only way to go.

Trish

[IAmTheWalrus]

I have had the benefit of seeing this from both angles. I waited and watched with the old liver, and rushed to treat with the new liver. The reason I waited was because this is what the doctor advised, and I did not know any different. The reason I rushed to treat with the new liver was because I felt I would not get a better chance to treat. I have to say that the more I have learned here and elsewhere, I am sure I am doing the right thing now, even if I don't SVR, and the more convinced I am that the blanket "watch and wait" method doesn't always fit, even when geno is 1 and liver damage is light, as has often been the practice.

I know my situation is a little different than most. The decision to TX now for me, despite light damage to my new liver, was a "no brainer" in my opinion. But the decision not to TX at diagnosis years ago, while my original liver was relatively undamaged, was very nearly the same decision that many here seem to be facing. What happened to me could very well happen to others. I feel obliged to share my experience to illuminate the danger inherrent in the decision to "watch and wait" exactly so that others can take this into account, either by less waiting, or by doing more watching as would fit the individual situation.

No one-size-fits-all protocol is going to yield the best decision for each individual.


.

[Mr Liver]

With a watchful waiting position you would have known to treat at a much earlier stage than you did. You failed to do the 'watchful' part. If you don't do this then you cannot say it isn't a viable position to stake out. You failed. The method didn't.

Mr Liver

[Deb_c430]

Sure about that mr liver?  He followed his Docs advice,   tell me how you watch and wait with out a daily bioposy?  Since that change in your liver can happen  almost happen over night.


Treatment is a personal decision, but treating  with or with success does protect the liver and help it to regenrate or at least give it a rest.   The earlier you treat and the younger you are the better your chances.  

[nygirl7]

"Sure about that mr liver?  He followed his Docs advice,   tell me how you watch and wait with out a daily bioposy?  Since that change in your liver can happen  almost happen over night. "


Exactly.  If you are having a biopsy every 3 years but go up two stages during that time........which is very possible..........how in the world do you then reconcile that your stage 2 is now stage 4? That to me is being watchful and wasteful.

You would need minimum yearly biopsies and that is NOT the way it is practiced now.
------------------------------------------------

I thought Walrus's post was excellent and described in a way that speaks from EXPERIENCE with both aspects in a way that drove the point home more than any of us second guessers have the ability to do.

In the end it's each persons decision but this game of trying to make people scared is just dreadful and it should end.  I'd be more scared of end stage liver disease than flu-like symptoms and a couple fevers.

[Trish77]

That's a helluva thing to say to a person.  We put our trust in our doctors to a certain degree and we do the best we can with what we know.  By your sentiment, every single one of us who listened to our doc on something and later wish we'd done just that extra bit of research or asked that extra question or said no instead of saying yes BECAUSE we find out later our docs steered us wrong...maybe.. just *maybe* things might have been different...is a *failure*???  By your token, every person here who got bad advice from a doctor they trusted on something, anything...is a failure.  That's so warped, I wouldn't know where to begin and wouldn't know where to stop so I'll just leave it alone.  It's just so off the wall it isn't funny.  Not even slightly amusing.  We all do the best we can with what we know....and sometimes we don't know what it is we don't know until it's too late to do anything about it other than live with what we've just learned.

Brent....if I know anything about you at all, I'm sure you've put yourself mercilessly through the "woulda, coulda, shoulda" process and likely still do from time to time.  Please do not let that warped point of view put you through that yet again.

[jmjm530]

Trinity:  My take from those people are do as I say, not as I did.
---------------------------------------------------
My take is that most who have treated -- successful or not -- are pro treatment. Mr. Liver is an exception and a remarkable one in my opinion -- as he's attempted treatment several times, currently is stage 4 (I believe) and instead of trying to justify his treatments is reaching out to everyone to warn them of potential problems. My hat off to Mr. Liver and the vast majority of his comments and valuable information.

BTW I'm in the "Watch and Wait Camp" and I did as I said. I watched and waited until I had more advanced liver damage and then I treated.

Lastly, part of the confusion -- other than the factual issues Mr. Liver pointed out -- such as the false argument that treating at stage 0 is easier than treating at stage 2 -- is that those of us who discuss and make example of a difficult treatment experience somehow are trying to make the case that our treatment is "representative".

Not at all. The point is that what some of us have experienced is representative of *some* of us. And the more important point is that no one can predict prior to treatment whether or not they will have mild, moderate or horrible side effects -- both during and post treatment. And because no one can predict, the potential for serious side effects should be factored into the risk/reward equation for anyone treating. How we interpret that equation is very individual but at least everyone should have the opportunity to know what sort of stuff to plug into the equation.

-- Jim

[granitekonig]

Mr. Liver wrote: "With a watchful waiting position you would have known to treat at a much earlier stage than you did. You failed to do the 'watchful' part. If you don't do this then you cannot say it isn't a viable position to stake out. You failed. The method didn't."


Wow, I read this and think you must be a very callous person. Iamthewalrous clearly stated earlier that the jump to Level 4 liver damage happened almost overnight (over the course of 5 years, while the initial waiting period took 40)

He was in contact with his doctor, obviously - he ended up being placed on a waiting list for a transplant. Telling someone they failed to preserve YOUR argument speaks much to your apparent lack of humanity and empathy. Hey, let's just say you win the argument out of pure technicality. Congratulations.

[Trish77]

It would be more remarkable if Mr. Liver would allow people the same choices he's given himself.  

I find it hard to understand why two people who have put just as much thought and effort into determining what is best for them automatically have to have one of them be wrong because what they decide is best for them is different than what the other person would choose.  Why are early treaters automatically wrong because the risk we choose is to risk the inteferon and it's potential effects rather than risk carrying the virus longer and it's potential effects?  There is plenty of documentation for both and I wish Mr. Liver would be honest that there IS documentation for both.  True enough that not every health issue for an HCV person is extra-hepatic however it is JUST as true to say that there definitely ARE extra-hepatic health issues that arise from carrying the virus over the years and this is definitely well documented.  There are plenty of reasons in both camps to decide one or the other and it's not all about the interferon.  

My girlfriend just lost her leg below the knee in a motorcycle accident, she was hit by a drunk driver.  Not a damn thing she could do about it except not ever get on a motorcycle, I suppose.  I'm still riding (such as it is).  I suppose if I get hit in an accident, I had it coming because of what happened to her?

This is one of those arguments that will *never* be solved.  

[apache1]

For all the waiters and watchers, you might want to consider a laparoscopic biopsy if you are contemplating betting your liver on a harpoon bx.

Don't get me wrong, I think, wait and watch is a very good option for some.
Only problem i see with it is,
you need accurate info to be able to make an informed decision.,
not 30% error rate imho

My Dr said that a normal harpoon bx has a 30% error chance.
Not a very good gold standard imho.

30% thats a lot.

The liver is big and the harpoon needle is small. Needle takes a small sample in a more or less blind jab.
Liver damage is not always uniformly distributed over the whole liver
My Dr said he does dual incision laparoscopic biopsy and he can look over the liver and take samples of any area in question.

Think the new consensus, among some hepatologist,  is for dual incision laparoscopic biopsy. They do not miss a thing and give very accurate results you can bet your treatment, or lack of treatment on.

Ever wonder why some people get a regular harpoon bx that comes back grade 1-2 and then latter have problems and get another bx  a short time later only to find now they have lot more damage. Did liver damage progress that fast all of a sudden ? or was the first bx wrong ? …. did the first one miss the bad damage ?
Just some stuff for thought.

apache1

[portann]

Do you think there's a lot of agreement that the lapaoscopic biopsy is the clear winner over the needle biopsy? If so, do you know if it's becoming a widespread option or do you have to hunt one down? Is the cost similar?

Thanks for your helpful post.

[jmjm530]

I had this dream. That one day everyone would simply state their case, offer up whatever advice/opinions they want, and that no one would jump down their throat as being "too negative", "too positive", "too irresponsible", or even "too Un American". Instead, those that disagreed would simply state why they disagree with the posters facts, opinions or advice. Better stop eating those mushrooms before bedtime.

-- Jim

[alagirl]

I honestly TRY to take the high ground.  Truly.  But I don't like being condescended to and that's what happened here and finally, I've lost it.  Again, not with you.  You and I agree on just about everything but this particular topic and you've never been anything but respectful when we disagree.

[granitekonig]

Hey, Jim I appreciate all of your posts on this thread. I have to say that most of it was very insightful.

Regarding your last post about your dream: I said in my very first post that everyone should post and vent about their negative experiences. My only complaint was about people telling others to stay away from treatment. To quote myself: "Writing to vent about your horrible experiences is one thing; Telling others NOT to do treatment is wrong."

It's that simple. You are too intelligent to require twisting things that others say in your favor.

[apache1]

Clear winner ?
Well a expert Hepatologist from the my hospital, UNI of Miami Liver clinic told me he goes in at 2 places with his camera, and LOOKS at the whole liver, then chooses any suspect areas to take multiply samples, of if needed, for bx.
About as accurate as one could ever hope for imo.

Seems like a no brainier that a blind harpoon bx would be less accurate.

I know Uni of Miami liver clinic does them. And iirr Boston also does them.
Dont know for sure, but would assume most other teaching University Hospitals with liver centers would also do them.

I am sure it is more expensive. An expert hepatologist is doing it instead of a radiologist and it would be a longer more involved procedure. I chose to have a fibroscan being 2b, and with my blood work, was going to treat no matter what. My Dr seemed to think the Blue Cross ins of mine would cover the laparoscopic biopsy no problem. He gave me the option.

Suppose the extra cost and time of procedure, would have to be weighed against what is at stake here..
To TX or not to TX.,,, If this decision is going to based on the results of the bx, I myself, would not want to be in the 30% error end of a regular harpoon bx.

jmho
apache1

[portann]

Granitkonig: "The last thing I need to read is someone saying that treatment is WRONG and people shouldn't do it. Writing to vent about your horrible experiences is one thing; Telling others NOT to do treatment is wrong."

-----------------------------------------------------------------------------

I think you're engaging in revisionism by saying that Jim was twisting what you said. You misleadingly referred to only one part of your post while omitting the other one above.

If some people want to give voice to an opinion against treatment, that is perfectly fine with me and nothing in the terms of use on this site precludes that. I don't need my hand held to protect me from what you see as big bad meanies and I'm surprised that you do. This is not a jihad forum voicing the one true path. There are people who make mincemeat of honest sincerity and muck about eviscerating the enemy without hesitation. Frankly, it's mostly the true believers.

[alagirl]

I had a lap biopsy about four years ago just on spec because they were trying to look at a spot that showed up on my mri.  I have BCBS and they had no problems letting them lap in to take a look even though there was no malignancy suspected.  Turned out nice that I did it that way - ok, well, it HURTS worse after - but nice in the long run because I also had pain in my low abdomen and going into my liver that way they were able to look down there while they were in and see that I had a hernia.  Twins.  One on each side.

So I don't know what the general acceptance from the hmo's would be in getting one under hcv circumstances, I just know that they ok'd mine with no problem (I didn't have hcv then).  But I'm thinking it might be more a matter of just finding the right doctor.

[Texas714]

You said you were getting ready to start tx....
I think all of this, the disease, the treatment, our conditions, naturally causes fear to the poor soul infected with HCV....or it did for me.  When we read the problems others have delt with during tx, it might intensify that fear...but it's not intended to do that.  And if someone thinks putting off tx for as long as possible it might cause doubts in our decision about tx but it's not intended to do that either.  And to complicate matters even more, the tx may not work for us.  
I guess my point is there is a lot of fear to deal with.  How we deal with it and what decisions we make are personal.
Good Luck to you with tx.

  

[portann]

Thank you very much for that reply. I appreciate it, especially because I read on the side board that you had a bad headache. Hope it's going or gone.

Must ask around about this laparoscopic biopsy. Even if it may hurt a bit more post-procedure, it seems the way to go.

[granitekonig]

How am I revising anything? Both sentences in that quote pretty much say the same thing: I disagree with people saying treatment is wrong. Because treatment isn't wrong in itself. Some people don't respond, fine. Some people have a harder time than others; that too is fine.

My only complaint, as I've said before, were people saying that treatment is wrong and should be avoided. I didn't revise anything by picking one sentence out of my original post - as the other sentence that you included clearly backs up the other, albiet more emotionally, I'll admit.

[Deb_c430]

It was beyond callous, rude,    Brent close your eyes,  some people are not nice at all, obviously you are brave man,

[jmjm530]

GK: Regarding your last post about your dream: I said in my very first post that everyone should post and vent about their negative experiences. My only complaint was about people telling others to stay away from treatment. To quote myself: "Writing to vent about your horrible experiences is one thing; Telling others NOT to do treatment is wrong."
-----------
Nice to know someone is interested in my dreams around here :)

Look, I can't argue the point that telling everyone to avoid treatment (or to treat) is the \right thing. So, hopefully, we're on the same main page.

That said -- it all goes back to your first post where you say in part "... I keep seeing posts that are warning people not to do treatment because their life was completely miserable while they did theirs..."

To me, it sounded like there was a whole flood of posts here that are anti-treatment, when the reality is that the tide is pro-treatment for the most part, and the kind of  anti-treatment posts you refer to are few and far between.  

As to the post that everyone seems focused on. Boy, how about a little sympathy for that fellow! My guess is that many of us wouldn't be as charitable  had we walked in his treatment shoes.

In that context, I really didn't feel his admonition not to treat should have drawn the flack it did. It was posted out of emotion, out of a very bad experience. It was not like he was making a point-by-point case not to treat, using all sort of funny data like a few others do on other web sites promoting false cures.

So, I guess in short, I really didn't get what you were complaining about or even why some others found his post so offensive in the context of a very harrowing experience. I saw the post as mostly an anecdotal experience and not as a case against treating, but that's just me. Anyway, things don't often communicate as well on the internet as we'd like, especially when there's the tendency to dissect every sentence someone says without the benefit of having the person in front of you for some interaction.

Anyway, welcome to MH, and I must say you sure know how to make an entrance. Hopefully, you've gotten some positives here as well as what you saw as negatives.

But in case not, and especially as a geno 3, make sure you get a week 4 viral load test with a sensitivity of at least 50 IU/ml and preferably down to 5-10 IU/ml. Blood should be drawn the day before your fifth injection. Also, you want to make sure you're on weight-based ribavirin. From your picture I'm guessing you're around 220 which would mean 1400 mg/day although I'd have to check the charts. You also want to have the "helper drug" discussion with your doctor *prior* to treating. In short, you want to feel comfortable that your doc will administer either Procrit (epo) or Neupogen before reducing either your ribavirin or Peg dose. Lastly, get your own copies of all test results and procedures. Even the best doctor offices screw up and in the end you will be your best advocated.

Good luck!

-- Jim

[Trish77]

I have to say ... I really really don't understand why a discussion about treatment devolves into a debate over which is better..."watch and wait" or treating early.  I don't understand why one IS considered superior over the other.  This treatment is SO individual to each person and how it impacts their lives and I really really don't understand the passion on either side of these discussions that would lead someone to push one or the other onto other people as superior when treatment impacts so many areas of our lives that it's impossible to ever give a one size fits all answer to this question.  And yet people try.  And then people defend their own treatment decision in the face of such strong opinions and then the whole thing devolves yet again into an "us and them" thing .. which I really don't understand.  Aren't we all trying to deal with our HCV in the way that fits best for US?  How can someone else possibly decide what is best for ME and MY family taking MY variables into account and how can I possibly have the right to tell someone the agonizing difficult decision they've come to is wrong for THEM?

For the life of me....I don't understand this.  Maybe I'm clueless or naive but I really don't understand this at all.

[orleans]

let me see if I can help explain ---this IS a D-I-S-C-U-S-S-I-O-N forum, is it not? Let us commence to discussin'--OH, we have! jerry

[jmjm530]

T:  I really really don't understand why a discussion about treatment devolves into a debate over which is better..."watch and wait" or treating early.
-----------
Because it's a very important decision and a question that many new here specifically ask about. They ask in one form or another,  "Should I treat or wait" and then people give their opinions.

Frankly, I see this as helpful because the person hopefully gets all points of view. Of course it would be nice if things were more civil but I've seen them a lot worse here, which is of course no excuse.

But to clarify my own opinion -- and I think there are many like me -- I do not think that treating early is wrong or that Watch n' Wait is "superior" in the sense that it's a no brainer. And without going into the details, I do understand both the medical and personal arguments of treating early.

That said, people come here asking for our opinions and that's what we give. I don't hide my bias for genotype 1's to  "Watch and Wait" but hopefully I'm always talking to someone who hasn't made up their mind and not criticizing someone who already has. That has never been my intent and I respect everyone who is treating regardless of liver damage -- although there has been some lament over those that started tx without proper information, as there has been lament over those that have waited too long or didn't treat hard enough.

In the end, it's all about educating ourselves as best we can and then coming to our own decisions. This place does a pretty good job at that if you read between the punches :)

-- Jim

[Trish77]

"In the end, it's all about educating ourselves as best we can and then coming to our own decisions. This place does a pretty good job at that if you read between the punches :)"

Nice post.  I guess there's just been alot of heat lately and over things that I really don't think should get heated if people are sticking to opinions rather than dogma.  

Nice conclusion, I would agree with your conclusion...and brings the temperature down a notch.  Thanks for the post.  

Trish

[portann]

I never thought this started out as a debate between watch and wait or treat early. It started off as a debate about the place in this forum to voice anti-treatment positions.

Noone here can impose his view on anyone but has a right - as I see it and as in the terms of use -  to express a contrary opinion againt treatment. This doesn't detract from the site, as some suggest, but enriches it.

You're a good case in point that often even your doctor can't impose his view, so how can people in cyberspace?

My own hepatologist was adamant I not treat - said it was dead wrong - because of how healthy and fit I am (was). He had no legal right to deny me treatment, though, when I insisted.  I decided to gamble in the face of his opposition.  I appreciate his frankness, gleaned from twenty years of working exclusively with HepC and being in the thick of international HepC conferences. It was quite nervy of me, looking back at it, but it doesn't mean I made the right decision - all I did was decide which road to travel. Time will tell.

I confess that my real subtext in participating in one of these contoversial threads is that I hate when anyone unfairly criticizes Jim (which I think we may all have done at one time or another, including me!).  This is no love song to him but he more than anyone in my time here is invariably fair or at least about to be fair. He is also one of those who expresses real sympathy for the people who - by no fault of their own -  experienced hell on treatment and afterwards. Most of us cannot imagine this but it seems sometimes like we want to cover our ears and be deaf to their experiences, warding off evil spirits.

Thanks, Jim, for your tireless help. With over 15, 000 posts, you've helped so many of us as we steer our way as best we can. Okay, that sounds excessively sentimental, so it must  be riba rage.

I sincerely welcome young Granitekonig with open arms. He aced a long thread on almost his first post!  He's my son's age and  I intend to reach out to him like the rest of us, if he finds himself in a bit of a pickle and comes calling.

[bajawoman]

Just returned from an appt with my GI decided to send my TX back and wait partly because when I was first diagnosed I was gung ho to treat and  now that I have read all the posts here and other posts on other forums and received the tests that I have recieved back and the tests I still need back   the consensus to wait my decision totally mine I own it

My GI attended a seminar in the US he was chosen and went to represent the state I live in of mexico and one hep specialist from each state in Mexico attended as well as specialists from south and central Americas
He is a believer as is his heptologist guru that he confers with here in Mexico DF that everyone should treat
it is a personal choice of course patient  but Everyone should tx no matter what stage they are at which was the consensus he came away with from the conference in the states he went to as well as the one in Latin America  

I will however wait until all tests are in for me  and I am in good physical shape I will not wait more than one year hopefully I will at this time next year or maybe sooner  be in much better shape

going to try the new drug to quit smoking and see it that works my cardiologist will give me a script tonight
as I sure have been smoking more and enjoying it less plus my eating habits are much less than desirable and the excess weight proves it as does the condition of my muscles from lack of movement all from lack of motivation and depression which I cannot totally blame HCV for

I am super lucky to not have more damage to my liver than I do for having the virus in my system for well over 40 years
I will see more how I feel in the coming months

This forum is very influential in my decision making process as it lets me know more and read more and to the point of being addicted to this forum which hopefully I can back off a while and start enjoying my life again and reading and posting from time to time instead of glued to it as a life line personally this has not been healthy for me I should be doing other constructive things besides TV and Forum

Tonight I have an appt with a cardiologist as I have had some problems in the past that I need to see if were HCV related   and then an appt with an  optomologist to see the arterial condition  and am getting blood  tests for my Thyroid  all of this exploration came from reading this forum

I already suffer greatly with symptoms which could very well be related to depression as well as HCV

I m begining Lexapro 10mg nightly tonight starting with half a pill  Hopefully I can get my mojo working and get back some of the motivation I so miss and hopfully jump back into life I have been the guest of honor at my own pity party for a long time and misery does love company

I am greatful that this forum exists and do not feel it should be in anyway against any opinion of anyone that wants to comment their views  I personally enjoy reading all sides of the coin and observe different issues and reponses

I now know tx does obviously as well as HCV affect the mind and alter normal thinking patterns and venting is a good thing as long as it is not hurtful or denying others rights and honors freedom of speech
It is a hard call to censor anyones views on HCV everyone has a right even if they are coming from a space no one can relate to

It continues to amaze me the intelligent comments and views here and urges me to educate myself  and inspires me to be aware of my body and my choice and helps me talk to my Doctor

  thanks to all who post on any subject and especially to those who have responded to my questions and posts no matter how inexperienced I am in the HCV journey

I am sure I will be in a much more informative position as the months progress and science and doctors through the trials and studies all over the world and the wonderful people who enter them produce more knowlege and follow up on the tx cures  

I also appreciate the reponses I have had that have come sincerely and lovingly  from much more experenced people here and especially to the frank and honest opinons given by those who have taken the time to give me their valued opinons
Muchas Gracias Amigos Siempre!!!

[toughluck]

I was told to stop treating at week 12  between the rashes and all the nice features of tx I will think twice before I do this again, opinions are like a--holes every body has one.

[Mr Liver]

" Iamthewalrous clearly stated earlier that the jump to Level 4 liver damage happened almost overnight (over the course of 5 years, while the initial waiting period took 40)"

He also said that he had adopted a watchful waiting approach from stage 2 forward. If this is actually done then he would not have progressed that far without medical evidence of doing so. WnW should also make use of ultrasound, and biopsy along with labs for all pertinent biochemical markers.  If the watchful part of the equation is not done then it isn't a true watch and wait approach and bad things can happen to the patient.

" I waited and watched with the old liver, and rushed to treat with the new liver. The reason I waited was because this is what the doctor advised, and I did not know any different"

granite said:

"He was in contact with his doctor, obviously "

It wasn't a very effective watch and wait regimen if someone can go from stage 2 to stage 4 undetected.That doesn't happen overnight. With a sensible watch and wait program it wouldn't have happened as this would have been discovered long before progression to cirrhosis.  If the watching isn't being done then you cannot say the course of action was the problem. And the patient has to participate completely, as well as the doctor. I don't think any hepatologist or even a GI would suggest to wait at stage 2 without coming in for occasional labs and tests to monitor for possible progression.

Granite, I told Brent the truth based on HIS statements.Watchful waiting is advised and practiced by some of the best hepatologists all over the world under the right circumstances. It is a VALID course to take for many people. But as even Brent conceded perhaps his doctor did not do all of his part. If the doctor is not following up on the plan of action then the patient must say something. Taking charge of your healthcare is vital. We ALL know that, right ?  

You said: " treatment can be very difficult for some people, but I think it's IRRESPONSIBLE to the health of others to scare and warn them away from the ONLY treatment that works. It actually makes me angry. "

Do you get as angry as I get when I see the cabal of pro-txers swarm a newbie and try to convince them to put toxic meds in their body when they have little or no damage ?
You sound like those in here who feel the need to have their choice validated . It gets their knickers all in a bunch if you mention certain things that ruin their recruitment abilities as is witnessed in this thread and others. And I have yet to see a post produced of more than one person in another thread who said to wait to treat until almost dead. Or until advanced disease is reached.

And why would a discussion about some very serious side effects that are possible from treating scare any one ? According to some here everyone knows the risks of particular sides effects in percentage terms from reading their drug inserts. Which, according to some, everyone does before treating. So, I don't understand your concern.

NY

"Sure about that mr liver?  He followed his Docs advice,  ?
Obviously his doctor advised a watchful waiting program from stage 2 forward. I address this more fully above.

"tell me how you watch and wait with out a daily bioposy"---  

I gave a few examples in my post above. Watching and waiting protocols are practiced by some of the top hepatologists in this country.

"Since that change in your liver can happen  almost happen over night. "

FIVE years is not overnight and under a watchful waiting program many tests and labs would have occurrred over that stretch of time.


Mr Liver

[Trish77]

"I never thought this started out as a debate between watch and wait or treat early. It started off as a debate about the place in this forum to voice anti-treatment positions."

??  I never said that it had ... it did, however, segue into a discussion about watch and wait vs early treatment, as threads often do take on a life of their own and it was this portion I was thinking out loud about.

"Noone here can impose his view on anyone but has a right - as I see it and as in the terms of use -  to express a contrary opinion againt treatment. This doesn't detract from the site, as some suggest, but enriches it."

It's an interesting debate that's been done here before on how much our words influence others.  Even posts in this thread have suggested that there are those who have been browbeaten into a particular course of action.  There are others I know who quit posting for awhile as they felt their actions would not be well received and they had to do what they had to do so they chose to go underground to be able to do what they felt was right in peace.  I've done the same at times.  So whether someone can "impose" a view on someone is a matter of opinion as well.  It's a tough thing to come to the kinds of decisions we make here without someone pushing not their opinion, but their dogma, as is my contention.  I have no issue with opinion.  It's the dogma that causes me concern.  My expressed frustration was at those who suggest their way is the only conceivable one.  That black and white perspective on things that says there is only one way that makes sense and everything else is wrong.

"You're a good case in point that often even your doctor can't impose his view, so how can people in cyberspace? "

I'm not sure what your point is in mentioning this but anyway....I don't think I'm a good case in point at all.  When my doctor said no to my request for neupogen, there wasn't alot I could do.  I could express my displeasure, look for another doctor, keep asking for the drug in different ways...but not exactly MAKE my doctor give me the neupogen.  He most definitely "imposed" his view on me and then for some inexplicable reason, changed his view.  It wasn't me imposing my view on him and him having to dance to my tune.  It was him deciding to change his tune for whatever reason.  If he didn't...I would remain stuck.  If the doctor won't prescribe, there isn't a whole lot left but to vote with your feet and sometimes even that isn't a viable option depending on the circumstances.

"He is also one of those who expresses real sympathy for the people who - by no fault of their own -  experienced hell on treatment and afterwards. Most of us cannot imagine this but it seems sometimes like we want to cover our ears and be deaf to their experiences, warding off evil spirits. "

Frankly, there is alot of hell on treatment mentioned in this forum.  There are ALOT of posts from people who say they're pd scared after reading the forum posts here.  I think there is a fair bit of support and sympathy expressed here for people going through hell and people seem to feel VERY free to post when they're having a tough time and everybody is very good at rallying around them to see them through.  So I don't see this "warding off evil spirits" that you see.  There is alot of tough talk here and there is alot of hope and encouragement here.  I don't see alot of people covering their ears and going "la, la, la, la, la".   To decide to treat early is not to bury your head in the sand, even though it is taken that way by some.  Neither is the watch and wait approach a fool's game as some like to paint it.  There are good reasons for each and the absence of that understanding is what upsets *me*.

[Mr Liver]

"To: Mr. Liver
You make your point as if that's a no-brainer, a one-size-fits-all approach to treatment, the very thing that should NOT be done here, to suggest that one person's decision about treatment, because it is well thought out for YOU...then must naturally apply to EVERYONE.  The same as one's treatment experience does not apply to everyone and to suggest that one should make decisions about treatment based on one person's treatment experience is just as irresponsible and obtuse."

I haven't a clue as to what you are saying.  I have repeatedly stated that tx should be undertaken only if necessary or appropriate. Do you have a problem with that ? Or was it my statement that if one can afford to wait without causing any negative ramifications now is a great time to do so with so many promising new drugs-- some which will hit the market in the near future ? Or was it my dozen or so past statements I've made crediting tx with helping me keep my liver as long as I have ? Please tell me.

"How can someone else possibly decide what is best for ME and MY family taking MY variables into account and how can I possibly have the right to tell someone the agonizing difficult decision they've come to is wrong for THEM?"

If you determine that all of your variables indicate the need to treat at that moment in time then it is obviously "necessary" for you treat. Watchful waiting implies no time frame. EXAMPLE: If someone is F-0 and is totally obssessed with phobic thoughts about 'little critters gnawing at my liver' or " hungry little creatures eating away at me" then it may be considered to be necessary to tx for the mental health of the patient. And it doesn't have to be this serious---If a patient with little or no damage  cannot stand the thought of waiting (inaction freaks some people out badly) OR  the  logistics don't support it as in your case, to cite a few examples, then treatment can absolutely considered to be 'necessary" .  It may not be necessary medically, but the word 'necessary" as I use it is not confined to describing medical urgency exclusively as I've just illustrated.

I really have no idea what your 'one size fits all' comment refers to since I have never believed in any concept even remotely near that concerning tx.

"Why are early treaters automatically wrong because the risk we choose is to risk the inteferon and it's potential effects rather than risk carrying the virus longer and it's potential effects?  There is plenty of documentation for both and I wish Mr. Liver would be honest that there IS documentation for both."

I have already asked if someone could tell me the difference in SVR rates for those who treat at F-0 vs F-2 ? Or the difference in SVR rates between the ages of 51 vs 59 ?So far, no one has and I was was wondering if you could since so much documentation exists which I can't seem to find.

"It would be more remarkable if Mr. Liver would allow people the same choices he's given himself."

"BING BING BING YOU GET THE GRAND PRIZE!!!!!!!!!!!!!  I do not understand the logic of this"

I'd love to hear the choices I had. The fact is none of you three have the slightest clue as to my situation when I treated and are just doing what you do best---sticking your feet into your mouths.

[alagirl]

Still have the headache but oh well.  They happen.  I did get a shot earlier today, kind of took the edge off.  They last a couple weeks usually so in another few days I should be great again.  Could be something worse, something terminal instead of just affecting quality of life - not that quality of life isn't important of course ;)

But the other thing I wanted to say about the lap biopsy is that I think they prob don't hurt as bad in healing as mine did, its just that I am very short waisted, so I couldn't sit without putting pressure on that area.  I have little or no scarring from the procedure.  

Also, since I have auto immune issues I grow crazy internal scar tissue, and my doctor, since he went in by lap, was able to clear out a thick layer of adhesions that had grown from the surface of my liver to the musculature (this, just from having had my gall bladder out a couple years prior).  It helped me to regain a lot of moblity that I'd lost.  He said it looked like something out of a sci fi film growing off of my liver.  So they got to kill a lot of birds with one stone doing the lap.

[alagirl]

moblity?  mobility even - geesh!

[portann]

Given that you're some of my only friends these days, if you tell me your favorite songs,  I'm going to play them on Utube this minute and dance to them, so I don't cry.

No salsa, though, I just took my injection last night. How about Dance me to the End of Love?

[DoubleDose]

This has been much more enjoyable...being the line judge in a tennis match...wow, my head has been snapping back and forth.  I used to go out on the court myself, but I kind of like this new role lots better.  Gee, these opinion things really have some 'pace' on them.  Game-Set-Match!  I think this thing is ready to be wrapped up.  On to the next tournament folks.
To think I wasted so much time on the court playing.  I'll keep the final score private, by the way.  Good night all.

DoubleDose

[jmjm530]

Sorry there hasn't been any "occult" or "persistent" content to draw your interest. Now those are fascinating threads that never have a contentious word.

[portann]

How about a dance with me before you hit the sack? And you know as well as I do that suggesting the thread needs to be wrapped up will only infuse new life into it. It's quite a testimony to tennis.

[Trish77]

I guess I could go through your post ... correct your interpretation of what you think I said with what I actually meant .. and give you credit for making some good points here and there even if the points you make in this most recent post are certainly watered down and tempered from the dogmatic tone of your earlier posts....and then I get to this last line:

"I'd love to hear the choices I had. The fact is none of you three have the slightest clue as to my situation when I treated and are just doing what you do best---sticking your feet into your mouths. "

And I say to myself... nah.....why waste my time.

[Mr Liver]

"Humans should avoid interferon and ribavirin as long as possible . With all of the research and documentation this really should go without saying."
------------------------------------------------------------------------------------------------------------
"This is an OPINION.  All of the research and documentation does NOT say this."

Let me decipher this for you. In essence I said there is a ton of info out there detailing the risks associated with treatment. If you read as much as even 1% of  it  you can figure out on your own that these are toxic meds, and as such should be avoided as long as POSSIBLE. Now maybe you can tell me how long that is since I have no idea ??? You seem to know how long this is though cause yer gettin' yer feathers all ruffled by it. I'd be curious as to what "as long as possible" means to you in this context ? As I've stated many times before here waiting as long as possible infers no specific time.  And as I've stated endlessly here tx should be undertaken only if it's appropriate or necessary. If a patiient with no damage feels compelled to treat after being fully informed of risk and benefit then its appropriate to treat. Its not necessary but appropriate in light of the strong desires of the patient to treat. I have NEVER stated ANYTHING contrary to what I just said. EVER.

And now to put it into proper context which you didn't do. You cut and pasted 2 sentences out of a paragraph. That's a cheap trick, but I expect no less from you. This is what I posted:

""I have repeated this here many times and will continue to do so: Treatment should be undertaken ONLY if it is necessary or appropriate. I have always said that people will differ where those lines are to be drawn.
Humans should avoid interferon and ribavirin as long as possible . With all of the research and documentation this really should go without saying. However, tx should only be avoided as long as there are no significant ramifications from delaying it. ""

What the hell does that last line mean to you, anyway ? You can't understand what it says or what ? Nice try at a hatchet job.

You: "HCV can and does cause issues in other systems of the body prior to F4. "

Me: I never said it didn't.

You: "On THIS thread you said the following, and I'm quoting you here, then turned around and said you didn't say it: "

"Extrahepatic manifestations are not seen IN THE VAST OVERWHELMING MAJORITY of those with HCV until stage F-4 is reached. "

Hmmm...it would seem you have ONCE more had a problem comprehending the words you are reading. My statement allows for those with minmal damage to experience extrahepatic manifestations. I try to choose my words very carefully but with you that is proving not to be necessary since you are gonna screw them up anyway.

Mr Liver

[desrt]

http://www.youtube.com/watch?v=ygKgiIZNbLA

[Isobella]

Well said =)

[HARRYBEADS]

  Opinions, opinions, ya know out of the four Doctors that treated me at a well respected Hep C treatment Hospital, only two said they would treat if in my shoes... exact words... then recanted when the head of the dept. said to wait. Wait for what, hope... god... who's god, or for them to grow a spine.
  My family Doctor was given the honours to inform me I had Hep C, he gave me ten years to live. That was my introduction to hep c, YOUR DEAD go and make arrangements. I'm still recovering from that bit of wisdom, gotta love them antide's.          
  Sorry but, the opinions here and in most places don't mean squat, we are just sharing our interpretations of the days events to each other as best we can and should NEVER be concidered in a discission as important as treat or wait. THATS YOURS!

HARRY

[Mr Liver]

"Maybe someone else whose ammonia isn't too high can translate it for you. "

Congratulations. You have just set a new low for this forum by making fun of a serious disability like encephalopathy . I'm sure all of those out there with ESLD will find it very amusing. If you can't keep your emotions in check enough not to disparage someone with a disability with your sarcasm then perhaps you should take a break from the forum and take the time away to gather yourself up.

If you look on the other thread you will see where I connected the dots for you on the study. You are welcome.

Mr Liver

[comeagain]

Sometimes I get so tired the once who stands by the fence and driving the horse always knows how to do it. But real horse drivers laugh and think the fence drivers are pathetic.

I think thats exactly how  a doc would look at us when reading some of the comments on some of the threads here.

Yeas some here are more educated then many docs about studys and HCV issues
but we aint no docs so we have a lot of knowledge gaps when comes to making decisions and evaluate situations and persons in the healthcare area.

A wise man once said stupidity is always sure of it self.
So when the arguments is about personal prestige and people start to act as they know it all about HCV treatment.
A treatment that is so new and so many aspects unexplored and unknowned yet such as long time effects from the meds why some people have it bad after tx although SVR and some the opposit.  Which people that shouldn`t treat because of mental issues.
How much geno aspects life stile aspects do for SVR rates etc etc.

In my opinion we are very much still labrats and when labrats turns in to know it all experts in a field where the most educated knowledgeable docs can admitt they dont know.
Then I start to get tired real tired and  if have been one of the expert rats it can make me weary for weeks LOL

But whats make me even more tired is when someone acts isensitive and rudely but cant or wont admit that they have.
And instead of just change behavior or maybe if it has been way out of line also apologise
and tell the person they have hurted regardles if it was on purpose or not that they are sorry to have caused the pain.
No instead they go on and on with smart arguments why they were intitled to act as a jerk which in their way of seeing it probably makes them a no or a lesser jerk  when its instead is the other way around .

That is just to much for me and I will not read what such a person is writing regardles
of how educated and how much they got their facts and figures right, until I´ve heard that they have realised the damage they have done.
Its just to sick and twisted so the benefits i can get from such person will never compensate  for the bad messages I will pick up from their writings.

Unless they come to their sences because we all need a second chance and to be forgiven not 7 times but 7777777777777777777 times.

ca

[epiphiny]

Thanks!!!  

[comeagain]

I have no problems with you never had I just talked to my ex to day about you and I said I really like and admire you, you one of the tuffest in a positiv way cockies in this forum i think.

I wasn´t thinking of you at all in my comment ok we all get homeblind here some times i think because of the treamendous amount of information and knowledge we achive here and for that I´m very greatful.

Its just that I want to remind us all that inspite of all we know we need to stay aware of how much more there is to learn about this disease.

You are not only tuff you also very intelligent and now since you have been of tx a while very charp and clear some of your speciall issues are a little to far from me but I very musch appreciate your inputs and looking forward to read them.

Bless you girl

ca.

[HCA]

I must say I like Mr Liver although he can be a bit of a bully.
His posts,,particlarly the confrontational ones are very well crafted and researched...
and often leave his opponents stumped for a good reply.
The reason for ny post is to query the incidence of HCC in cirrhotic patients,which I believe Mr Liver you cited as 3% of the cirrhotic Hep C population..
Are you certain it is not actually 3% per annum.which is the risk ratio I arrived at from the availible studies.
If I have got it(or read it) wrong you will doubtless let me know!

[merryBe]

that's bunk, been in here 1 1/2 years and seen 2 people out of hundreds ever say that....
one was an unfortunate who did have major issues with his health, and the tx is hard on especially those with already weak constitutions, the other was a tx failure trying to sell folks on natural and unproven treatments.

everyone else, no matter how hard their side effects encourages tx, unless, and this is the one exception, if you are in the earliest stages of the disease there is a case to be made for waiting the 1-2 years for the newer antiviral teleprevir to come out. ONLY because early results show a marked increase in results. Some stats showing an improvement to 75% SVR over the 50% success type 1a noe has, AND the tx time is cut in half.

I guess you can read one or two posts and get the idea people in here are anti-treatment, but you must have read the rarest posts, because there are hundreds of protreament posts for every negative.

Perhaps you should read some of them,

At what stage and grade is your disease? Have you been biopsied?

mb

[comeagain]

Correction time is now 9 a clock in the morning and i havent sleept a wink.

Of course I´m not greatful that we are getting home blind and forget how new and insecure the meds for HCV is but i do appreciate all the knowledge and I´m no admires of  docs in general but some not many I can admire.

I my self relapsed, maybe because of to little knowlegde from the medical society.
And of course i´m not looking forward to reading your comments on topics that are far from me and my knowledge buth everything else you write .

[fretboard]

Personally I think most ppl who come and read this forum are alot smarter than some idiot poster who had a bad tx experience and tells ppl not to tx unless they're on their death bed.  The couple of posts advising ppl not to tx were posted by ppl who were obviously ignorant to what they were getting themselves into.  Sure maybe some ppl would run with what was said, but I don't think there would be many.  later

Reasons why patients infected with chronic hepatitis C virus choose to defer treatment: do they alter their decision with time?

Khokhar OS, Lewis JH.
Division of Gastroenterology, Hepatology Section, Georgetown University Medical Center, Washington, DC 20007, USA.

This study was designed to determine the percentage of treatment-naïve patients infected with chronic hepatitis C virus who make an informed choice to forego (defer) treatment with pegylated interferon regimens in the absence of any medical, psychosocial, or other contraindications, and to reassess their decision by using a questionnaire at least 1 year later. Patient charts dating from 2001 were retrieved and retrospectively analyzed for the following data: patient age, gender, race, hepatitis C viral load, genotype, liver biopsy results, hepatic imaging results, peak alanine aminotransferase (ALT) levels, comorbid conditions, source of infection, estimated duration of infection, and reasons given by the patient for declining pegylated interferon-based treatment at the time of their consultation. A questionnaire survey sought to determine their satisfaction with their initial decision. Of 446 patient charts reviewed, 280 patients were treatment-naïve and were judged to have no contraindications to receiving interferon-based therapy. Of these, 115 (41%) opted to defer treatment and are the subject of this analysis. Women declining therapy outnumbered men by approximately 3 to 2. Middle-aged patients (45-55 years) were most likely to choose expectant therapy compared with older or younger individuals. The proportion of African American patients who deferred therapy (48%) was higher than non-African American patients (36.6%). More than 90% of the patients choosing to be followed were genotype 1. Peak ALT values were normal in 37% and 16 years in approximately three-quarters of individuals. The most common source of their infection was intravenous drug use followed by transfusion-related. The most common reason for opting not to receive treatment, given by nearly two-thirds of patients, was the asymptomatic nature of their infection coupled with their concern about side effects of the medications. Approximately 10% had unfavorable social situations, including a lack of support or health insurance, that precluded receiving therapy (despite the availability of indigent care programs offered by the pharmaceutical manufacturers). Only five patients (4.3%) cited doubts about efficacy as the main reason that they did not want to be treated. The questionnaire survey at 1 year found that 79% of the patients confirmed their ongoing satisfaction with their initial decision to decline treatment, and another 10.6% indicated that they were still "moderately satisfied" with their decision and unlikely to change it in the near-future. Only six patients (7%) voiced their current dissatisfaction with expectant management and expressed the desire to have a follow-up discussion about treatment options. Of the remaining three patients (3.5%), two had already started treatment and one was deceased (of non-liver-related causes). A significant proportion of patients infected with hepatitis C virus who are otherwise eligible for therapy opt to defer treatment (41% overall in our series, with African American patients deferring in a higher proportion than non-African American patients). Nearly all of our patients were genotype 1 with clinically and histologically mild hepatitis of reasonably long duration. Our questionnaire survey found that most remained satisfied with their decision to defer treatment at the present time. Few patients cited a perceived low rate of efficacy of pegylated interferon and ribavirin therapy as the principal reason that they chose not to initiate treatment.

PMID: 17357838 [PubMed - indexed for MEDLINE]

[Trish77]

I want to make it clear that I don't care whether someone chooses to treat early or treat later or WHEN someone chooses to treat as long as they have enough information to make a good decision for themselves.  Rather than address someone directly, I just wanted to post articles for people to read so that they can make up their own minds on what this means to THEM.  I don't have time to post everything I'd like...so here are some articles on extra-hepatic issues resulting from HCV.  Frankly, I didn't know about these until AFTER I'd decided to start treatment so these were not part of my consideration for doing treatment.  If I was deciding now, I would consider these and IF they have any significance to me.  Another person needs to decide that for themselves.

When I read up on extra-hepatic issues, my current thyroid problems that I thought only started due to interferon treatment seem to have the possibility of being underlying extrahepatic issue that interferon revealed rather than caused.  Food for thought for me, if nobody else.  :)

This article contains no data on how often these things arise among the HCV population, only that they are now known to be extra-hepatic issues:

http://www.hcvadvocate.org/hcsp/articles/Bonkovsky-2.html

This is a short article excerpt and contains some percentages of incidences at least - I don't have the whole article, however this at least contains data and stats and enough information to add more to the picture

http://goliath.ecnext.com/coms2/gi_0199-5000430/Extrahepatic-manifestations-of-hepatitis-C.html

Etc:
http://www.hepctrust.org.uk/hepatitis-c/The+chronic+phase/extra-hepatic-complications-of-hcv.htm

This one is much more comprehensive:

http://www.nationalhepatitiscinstitute.org/Data/Research/TheLiver/Extrahepatic/Manifestations.htm

As is this one .. this is very good and again more comprehensive:

http://www.jgld.ro/12007/12007_10.pdf

That's all for now.  I have to get off to work.   Week 32 and fighting hard.

Take care, all.

Trish

[jmjm530]

This is turning into one of the uglier threads I've seen in over two years at Med Help. Regardless of what Mr. Liver said, I do not think you have a right to use his ESLD (End Stage Liver Disease) status against him in response, and specific I'm referring to your post regarding "ammonia" levels. I've always respected both you, your treatment journey and your contributions here. I see this then as some sort of abberration but you really should correct it. Personally, I think the "lines" at MH should be drawn a lot tighter, but I don't think anyone can argue that you didn't cross one here.

-- Jim

[DoubleDose]

A testy thread indeed.  From my own past experiences on this forum, it really would be best to move on, and cool off.  No further clarification, or justification will come from this sort of dialogue other than creating greater enmity among members, and deteriorating the whole purpose of the forum.  I'm not trying to be lecturing or self-righteous, because I have been 'stuck' in this sort of thing myself in the past, and it just keeps making you more and more angry and fired up...to no avail.  People only become more entrenched in their own indignation, and keep blasting the 'other side'.

Maybe we can all just agree to angrily disagree on all of the above, and move on to other questions and threads.  This thread is a great examply of why I won't debate HCV issues on the forum anymore.  It causes more anger, and inflames more tempers than anything else, rather than promoting a sense of community and collegiality.  Maybe with all of the HCV issues, and Tx toxicity we have all endured, we are somewhat incapable of pursuing a healthy debate or of holding conflicting opinions without experiencing a degree of anxiety, anger, and aggression.

Let's remember, we ALL are capable of acting like 'jerks' at times, and our medical issues may only exacerbate that tendency.  I think we are all here for a positive purpose.  Cooling off may be the best way to get back to that place.

Sorry for interjecting my own opinion, but I really do..feel your pain.  It has now become a 'no win' thread.

Doubledose

[Jacob43]

As someone that has not been here long, I appreciate DD and jmjm last two posts.  Things have gotten out of bounds.  Reading the comments and responses slowly and carefully, it is my humble opinion that in some cases it is either comprehension problems or high emotions getting in the way of responding to what is actually stated.  

A few responses have left me scratching my head, and saying, "Huh?  Did they not take the time to thoroughly read the comment to which they are responding?"  Not finger pointing... just a subjective view from a rookie that has been reading over the last four months  - to me, some people literally appear to be either making things up or just mischaracterizing what someone else is stating.

I've even noted where someone will counter an 'argument' they just made in an earlier post - being all over the place in their views.  Treatment, (as I observe it) beats people up - it is obviously a strong treatment, (I've read the side effects - one being cognitive skills)... so it is wise giving that consideration when communicating with one another - and most people do so, most of the time.  Some do not know how to leave emotions at the door and want to attack.  No doubt, my opinion will be under attack.  

Going out on a limb here, after reading, I can't help believe that some may be questioning their own treatment decision as they vehemently defend it. That's not a fact, just my personal biased opinion.   I get the impression (not from all but some) would like everyone to treat (even if they don't have HCV).  Ha! Ha! (My feeble attempt to interject some levity).  But I get that feeling some are attempting to convince themselves that their course of action was the best one and any one who 'suggests' that some can afford to wait really gets their panties and/or boxers in a bunch.  Yet, at the same time stating they respect other's choices.  I don't know.  

Things have gotten ugly on this thread where, in some cases, self-respect is pitched.

[comeagain]

DD  thx for admitting your a jerk sometimes so am I.

I didn´t  realised what arla had said about ammonia level .
Arla you are to much of a fine person in my opinon, not to apologise for saying such a thing.

ca

[apache1]

True or not, is this an acceptable response for a liver transplant patient to receive?

by Mr Liver
, Oct 21, 2008 10:51AM
To: IAmthe Walrus
With a watchful waiting position you would have known to treat at a much earlier stage than you did.
You failed to do the 'watchful' part. If you don't do this then you cannot say it isn't a viable position to stake out.

You failed.

The method didn't.

Mr Liver

[granitekonig]

Hey Jim, thanks for the welcome and the advice. I'm only 190lbs, actually. I haven't done a biopsy. Do you think it's necessary, given that I am 32? I did test positive for anti-bodies when trying to donate blood when I was 19, so I've had it for at least 13 years. My PCP said he didn't there was reason to believe I had any significant damage but he did say that off-hand, and he isn't a hep specialist. Regardless of the biopsy, I WILL be starting treatment as soon as possible, given that I'm geno 3.

[Marcia2202]

Welcome to the forum. They say that a biopsy is the best way to determine how far your liver has been damaged. How long you have been infected, cannot really predict the amount of damage either.

I am geno 3a and may have had HCV for 25 years.

I live in Denmark and here they do not usually do a biopsy on geno 2 and 3, unless they suspect cirrhosis or if the patients insists on having one.

I was okay'ed for a biopsy, as I really wanted to have it, but they had to cancel it last moment, because my blood coagulation time (APPT) was to slow.

They performed 2 ultra sound scans at two different labs with the same results. No cirrhosis and all other organs in order... In short, my liver was fine from what they could see from that.

So I started treatment without a biopsy and have just done shot 10 yesterday.

All the best to you,

Marcia

[nygirl7]

We are ALL capable of quite a bit of snark at times when arguing with someone in here. Plus it's the internet and you cannot tell in which tone something is said - there is NO edit feature which we could definitely use.  

There is no need to repeat any statement made and get on a soapbox over it.  

People treat hard in here and make mistakes. Talk about censoring and censorship - just ridiculous to act as if this was the worst thing ever said on this thread. Personally, I've seen MUCH worse.

Let it go and don't forget to take your perfect pill today, my script ran out.

[Deb_c430]

Apache I am with you, tis indeed one thing to be factual in a court of law,  Quite another to make someone feel bad, Hind site is always so much wiser.  He has been through a lot,  your words are insensitive,   and some what mean.  On this forum I was accused of solidarity, they were so right, when it comes to people I care about, people who have earned my respect I am there,    

I to have read much worse,  manipulation and games. Respect is given when it is earned and  understand or like anothers view or not,  sometimes it is best to let it go.  

Deb

[zazza]

"And no one should blame a patient when it is a doctors duty to explain tx and fully inform THEIR patients as to potential risks and side effects. No one patient can 'guess' all of the correct questions to ask, nor can they trust everything they read on the internet. We put our faith and trust in professionals as a matter of necessity all of the time. We have to put faith in many professionals as we can't possibly become experts in all of their fields in an effort to learn what they should actually be telling us."

This is an excerpt of yours from a post on the thread "Treatment worse than disease, last option only?". To me this is the essence of why IAmTheWalrus in no way can be at fault, and it surprises and saddens me that you in any way would express such a thought.

IAmTheWalrus, you are a true hero to me!

[portann]

Lots of truly suffering people here and we are addictively stirring the pot.

I haven't read all the posts or past threads that carry baggage for a lot of senior people but we are stoking the flames instead of putting out the fire. It started out as a discussion about anti-treatment threads, 'segued' (Trish's expession) into early or later intervention but now is more about self-righteousness and occasional vindictiveness.


Last night, I was reading aloud to my husband a very informative post by Mr. Liver in this thread about laparoscopic biopsies. My husband had just returned from an out-of-town conference and commented that it was a really excellent post. "Wow," he said, "you hang out with more intelligent people than I do."  And then I returned to the main page and as quick as you can say Jack Rabbit, the post had been pulled. It had had no insults in it whatsoever, it never referred to any of the broohaha but somehow it was deleted. Wow.

With so much constructive going on in this forum, why churn this collapsing account? I apologize for adding to it.

[Trish77]

Zazza, you are also my hero.  Lovely post.

I have committed my own sins over my time here on this forum and the only thing I will say is that I agree with DD .. this thread did not start out that way but it has degenerated into a "no win" situation.  R.I.P.

[jdwithhcv]

I haven't read all the posts or past threads that carry baggage for a lot of senior people but we are stoking the flames instead of putting out the fire
------------------------------------------------------------------------------

Who are "senior people"?

[can-do-man]

NY girl.....take your perfect pill today, my script ran out.
-----------------------
Well getem filled girl me got some fudge bars and some gold bond lotion, see you later?

portann....."you hang out with more intelligent people than I do."  
-----------------------
Thanks your way to kind to me:)

jd.......Who are "senior people"?
-----------------------
Those blue hairs that drive to slow.

trish....I have committed my own sins
-----------------------
None that i know of but if you have cando forgives you.
-----------------------
Zazza, you are also my hero.  Lovely post. AND a lovely gal.
-----------------------
IAmTheWalrus, YOU are the man

Cando

[nygirl7]

Love you CanCanMan - that is the post that should end this thread.

But it won't. But it should.

Every one should have your widsom and sense of humor.

[geterdone]

Boy, if there were an I-horn moment, it would be now.

I will have to agree, I’ve been here a year and a half, and this is the lowest that I’ve seen other than the bashing Bonnie took almost a year ago and a recent thread concerning 4c. I have managed somehow to stay out of these threads by choice but this may turn into one that the Grand Poo Baa may hold an interest. Mr. Liver has his views as everyone here and many might not agree with it but none the less he is a member.

geterdone

[Mr Liver]

Thanks for the post. I'm not a bully though. I try never to throw the first punch. I admit that if someone lobs a grenade my way I tend to answer with an atom bomb, but I assure you this is all in an attempt at expediency and not intended to inflict severe emotional pain. ;)
You are correct when referring to the annual risk to cirrhotics of developing HCC as 3%.  I think that was what you were referring to. The  3% I was referring to is the appx overall death rate per 100 people infected with HCV.  These certainly are separate from each other in meaning so thanks for catching that.

Those in the 3% mortality rate are not all the victims of HCC and this makes my number innaccurate. Some die from co-morbidities, and some from complications due to cirrhosis. I assume this is why some studies have HCC mortality rates in the overall population of HCV infected people to be as low as 1%-2%.

If I haven't got this right yet let me know.

Every time I see the letters HCA it makes me think of the Hepatitis C Caring Ambassador program.
http://www.reuters.com/article/pressRelease/idUS209641+11-Mar-2008+MW20080311
http://www.democracyinaction.org/dia/organizations/IMPACTC/campaign.jsp?campaign_KEY=480
Great org that is part of a nat'l network of non-profit HCV orgs.

MrtoknowmeistolovemeLiver

[IAmTheWalrus]

Don't worry! I have a fairly thick skin. I respect your opinion. I wish you had been around when I was diagnosed to advise. I particularly like your insight into dual incision laproscopic biopsy. This has obvious diagnostic advantages.

Just to clarify a little:  I have to admit, that the watchful part was not watchful enough. That IS my point. My advice has been consistently "if you watch and wait, make sure you watch adequately".  I also point out that you cannot may not be able to trust your doctor on this. Not having been to medical school, I did not question my hepatologist's orders. Just came back five years later expecting not much difference. I know better than this approach now, and let others benefit from this experience.

I didn't fail so much as the doctor's plan for "wait and watch" failed. Perhaps you would have prescribed a more vigilant watch than he did, but that was the plan I was given along with the usual adage about dying with the disease. Again, this IS my point: if you want to wait and watch, you may want to be very careful, study HCV so that you will know the proper vigilance required.

As a side note: I think we pay our doctors way too much to have to rely on ourselves for such specialized knowledge and dicey decision making!

I think for those that advicate always treating early, or always wait and watch, you just have to agree to disagree. It is obviously not a one protocol fits all kind of thing.

WalrusSkin Brent

[Jacob43]

I must say you are two of my favorite reads (there are others, of course).  Neither of you get whacked out in expressing yourselves and that's refreshing.  We certainly can use more of that here.  

Being someone that has not treated yet, I enjoy the views, opinions.  I see it pays to be vigilant in waiting.  Just wanted to thank you both ..

This is a fantastic forum.  

Jacob