what is the life expectancy of an non-responder ( HCV ). using Milk thrist

[webprince]

Hi again, I had a question in my mind so i thought that i should ask it:). I wonder how much HCV patients die due to HCV disease.
Thanks,
Naeem

[tmangeles]

I dont know the stats but it seems like very few...If you have geared your lifestyle towards taking care of yourself..If you dont use alcohol and drugs that insult the liver and have a healthy diet..I would say you will probably die of something else first..

[hep62pj]

that is the general concensus i have heard also...that only 10-20% will go on to cirrosis or liver cancer...

another reason not to leap into debilitating tx unless you absolutely have to

i see in your subject there about milk thistle i take 2000 mgs concentrated every day, who knows if it is doing anything or not ... hey maybe that is the source of my stomach problems??? anybody???

[webprince]

to hep62pj, 2000mg is perhaps a huge dose of sylmarine. my doctor recommended only 2 capsules per day. each capsule contains 200mg sylmarine + 10mg zinc+ 25mcq selenium. so this makes a dose of 200*2= 400 mg sylmarine(milk thrist). So why dont you ask your doctor to reduce your dose. since large doses are not always more useful. i think 400mg is doing the same for me as the 2000mg is doing for you.
May be i am right or may be wrong.
but i think it will resolve your stomich problem:)
however one thing is sure now that sylmarine ideed reduces liver inflamation (inflammation) and lower alt and ast. atleast it is proved here in Pakistan.

Thanks,
Naeem

[NYgirl]

Said: another reason not to leap into debilitating tx unless you absolutely have to


I disagree completely.  How do I or anyone else know if they would be part of the 20% that might get cirrhosis and then progress onwards farther still - perhaps get liver cancer?  Getting cirrhosis does not mean death, treatment is not necessarily debilitating.

Treating drastically lowers our odds of getting liver cancer - and that is what I would be worried about killing me, not cirrhosis.

[Alady1620]

I don't believe it when people say most of us will not die bc of HCV.  I had 2 cousins die of cirrosis.  Both were IV drug users and alcoholics.  I am positive they had hepatitis C.  Both died bc their livers quit on them.  Of course, they never quit drinking either.

[webprince]

I hope all of you might already know that Alchohol alone is as dangerous as HCV. So drinking alchohol is calling for death. it doubles the struggle of liver. liver which is already struggling and trying to handle HCV alone.
I have searched a lot and found out that nearly every person who died of HCV was involved in drinking Alchohol.
I would request all of you to try to avoid alchohol as much as possible:). Because i want to see you all happy and living as happy as you were before the diagnosis of HCV.

[NYgirl]

You preachin to the choir boy!

Seriously, people (and I didn't either I have to admit) realize how much that alcohol is REALLY doing to the liver.

There is no WAY I'd be stage 3 except I drank like a FISH for a LONG time. And sadly even before I knew I had HCV I KNEW I must have an awful lot of liver damage...I EXPECTED that I had it but that craving made me just not really CARE -

How messed up is that? It's doesn't just ruin your liver it wrecks the little bits of brains that you have left inside your skull. Then you do treatment and WOW brain fog...amplified...and you sound like me rambling on and onn.......

[BostonGirl]

Thanks girls for validating some very overlooked information in the Hepatitis community. I get so sick of hearing doctors say " Oh, your liver is fine, you will die of something else " That SOMETHING else will very likely be linked to the virus.

I see two liver specialists ( actually they are very good friends) one guy is a big mucky, muck from Stanford on the Transplant team. He is light years ahead of many concerning Hep C.

He agrees that the stats are very underestimated and the medical community is slow to take ownership of actual Hep C deaths. He has seen patients with what is considered " mild to moderate " liver disease, no where near end stage, yet in bad shape because of " SOMETHING " else.

If I did not personally see with my own eyes, death certificates that stated causes other than Hep C as the cause of death, I never would have believed it. I know these people died of Hep C liver failure, but it is not recorded that way.

On the flip side of that, not everyone with little or no liver damage should go running into tx because of this post. Close monitoring of labs, good eating habits, exercise and a balanced regimen of vitamins & supps should be first line of defense.

I was diagnosed 4 years ago and did the watch & wait thing until the cryo kicked in. If not for cryo, I would not even have attempted tx. God Bless, Sue

[BostonGirl]

The stats say only 10-20% of Hep C patients go onto End stage or will die from Hep C. But I do not believe these stats are correct. My doc has told me the stats are probably a lot higher.

People die from complications/ diseases created by the Hep C itself. Example : the death certificate says Death due to kidney failure. How did this person get kidney failure, Hep C
( this girl did not drink or smoke, took very good care of herself. Died in her 40's)

Another person had stage 2-3 but developed a wierd autoimmune disorder that thickened up the blood quite a bit. Was put on cumadin (coumadin) & monitored. Had a stroke and died. Cause of death > Stroke & blood clots. Hep C not listed as cause of death.

My X who was End stage and had liver cancer >>>> died at age 55 in 2001 waiting for his Transplant. I know he basically he died of liver failure due to Hep C. His death certificate states cause of death as septis. ( which did happen at the end ) I saw the death certificate, septis was listed as cause of death.

My point, doctors are writing ALL kinds of reasons and causes of death on those death certificates other than Hep C. So the stats are on a sliding scale and not true numbers. I believe the stats are actually much higher than 10-20%. Just my 2 cents.
Sue

[NYgirl]

What an EXCELLENT point you have made.  Thank you for posting that it's something I wouldn't really have thought of yet makes EVERY sense in the entire world.

I still stick to what I say to myself - you do what you can regarding this disease and fight it the best that you can and after that...you have to just stand.  In the end all the "odds" in the world mean NOTHING, unless the odds are 100% - you never know if you are going to be YES or going to be NO...not even if they are 99.99999% to point 1 really.  You could always be that point.

[Alady1620]

I completely agree with your post.

[willing]

good points, but on the other hand there is no reason to believe that failure to track death certificates to their most likely cause is unique to HCV (eg pneumonia reported as cause of death when the pneumonia was triggered by something else). There's no arguing with the many complications associated with chronic HCV, but the only ones that seems to have associated mortality rates explicit enough to get detected in population-wide studies are ESLD/HCC and even these remain remote until cirrhosis sets in. The clock is definitely ticking, as clearly shown by the ominous increase in HCV-related deaths in the graph at the bottom of abstract M1921 (<em>Persistently High Mortality Rate of Alcoholic Liver Disease Despite The Hepatitis C Epidemic</em>)from last week's <a href="http://www.soe.ucsc.edu/~afyfe/167923Xy-Zq/hcv_abstracts.pdf">DDW</a>, but there doesn't seem to be much reason to believe the situation is much worse than what is being reported (or put another way, OK, we've hit an iceberg, but there's still time for a couple more waltzes before checking out the lifeboats).
PS - you haven't taken to reading obituaries by any chance? Bad habit, as I can attest.

[amirtracy]

Case in point: my mom died from lung cancer but her death certificate says "respitory arrest"  father from alcoholic cirrhosis but his says "septis"...how does anybody know anything from reading those things.

[BostonGirl]

Willing, haven't looked at obituaries in a long time. I choose life! These people I know personally and one being my X-husband. One lady was told many years ago, her liver was fine, don't worry it's mild Hep. She went into liver and kidney failure in about 10 years and died. No drinking involved.

Yes, it's an Iceberg, but there's more than meets the eye with these so callled death certificates, speaking from personal knowledge.

Tracy, my mom died from breast and lung cancer. Death certificate states death by respitory arrest, as well. What does that tell you? Did she have emphezema, asthma, some sort of lung disease, but NO mention of cancer.

I think it's an easy way to keep numbers down in the cancer field too. I've seen it too many times because I've lost a lot of people I love. Hey Willing > Do they print death certificates in the OB's now? wouldn't know.

[friole]

Trying to catch you through the threads.  You suggested I read Abstract 176 which sounds pretty interesting (regarding viral load evident to patients with clear-to-50 PCR tests) but I can't find it -- can't get to any link.  I went to the DDW sight but those abstracts are 4 digits.  I went to hivandhepatitis c and couldn't find anything.  Could you link it again for me (altho I have been having a problem with your links today -- they lead me to error messages...) or, esend it to me if you can. (my screen neme here at aoldotcom.)  thanx, kathy

[GoofyDad]

See willing's C12 post in this thread for link to DDW. Once the PDF loads, use the binoculars 'find' tool to locate 'final id: 176' (no quotes).

[cuteus]

I was going to post the same point yesterday but my freaking keyboard is acting up! I am so glad you did! I always wondered about folks like the celebrities that die of 'liver failure' and you wonder if hepatitis was involved.

[stangshelly]

I HAVE HAD THIS HCV FOR 20 PLUS YEARS...STAGE 2 AND HEAVY INTO HAPPY HOURS AFTER WORK FOR YEARS...QUIT ALCOHOL 2 YEARS AGO THEN TEST CAME BACK ACTIVE HCV...DORMANT FOR 20 YEARS..10 TO 15 YEARS AFTER SUCUSSFUL TX IS PREDICTED THEN POSSIBLE TRANSPLANT FOR ANOTHER POSSIBLE 10 YEARS...ONE Day AT A TIME..THEY DON'T REALLY KNOW...BEST WISHES

[willing]

Kathy: the abstract id is in fact 176 (both 3 and 4 digit ids were used). If the steps described by goofydad don't work you can also read it <a href="http://www.hivandhepatitis.com/2006icr/ddw/docs/053006_a.html">here</a> which tn linked in a thread above. The hivandhepatitis.com reprint seems to have edited the conference version a bit.

As noted earlier, it's hard to compare this with Berg directly since they focused on a different criterion (the 222 with 2log drop for whom extra blood vials were still available). Berg predicted 85% SVR rates for those with VL 0-50 at 12 whereas Bergk predicts 81% SVR odds for those with VL 0-10 at 12, so the new data is a bit more pessimistic but in the same range. Overall, I think it provides good justification for your decision to extend  a couple of  months. In conjunction with abstract T1807, showing that 32 weeks may be sufficient I think this is the beginning of the end of the "everybody does 48 except those without a 2log at 12" rule. The new rules may well be to only do either 24 or 32 if you are und at 4 and 12 respectively and more than 48 if you have VL at 12.

Bostongirl : actually the obits usually don't report cause of death. I have to admit I've taken quite an interest lately, along with tracking the prices of funeral arrangements. It took me back a bit to find caskets on sale at costco the other day, right along with tires and garden supplies. The high price of funeral arrangements has been one of my most reliable survival strategies and I'm very concerned that we're now going to be flooded with low-cost Chinese caskets...

But really, all I was trying to say is that there's not much evidence for significant mortality among the ill-defined complications of HCV outside of ESLD/HCC.

[susan400]

I don't believe in my case that something else will be the cause of my death.  Unless I get into an accident or get murdered or something like that.  I've been checked out and tested for everything.  My heart has had gobs of tests done on it, my abdomen, my kidneys, my skin, etc., etc.  I've had a complete hysterectomy so I won't be getting any cancers in that area.  The only thing that is wrong with me is my liver.  I think that they downplay the seriousness of Hep C because they know that they have no cure and it makes them feel better!  Granted, if your a stage 0 or 1 and have no real damage, then, this statement would bear some truth to it. But,I have damage to my liver.  I've been getting continual progression in the damage, as evidenced by 3 biopsies each one showing more damage. And this is in spite of all my treatments.  So, you no damage people, say a big prayer of thanks to God that you're doing so well!

Susan

[BostonGirl]

Willing;
         I so can relate to the costs of funerals. Have buried too many to count and it's hard enough loosing someone you love and then having to go through the stress of the finaces, wills, ect.

My family had a horrible time after my Dad went, just fighting over stupid money and greedy. It was ugly. Anyway, haven't seen the caskets in Costco yet, I am sure they will be coming to my town soon. It's kind of creepy.

Susan;
       Us No damage people will say big prayers for you! I have followed your posts, tx journeys, ect. and find you are a true Warrior Princess. I do not know how you do it. You are in our prayers to make this your last round and go to SVR forever.

As far as the whole thing about doctored up death certificates, all I was trying to point out ( from my personal experiences )that cause of death is not always accurate.

My X-husband was End stage and then went into liver cancer. But no other major health things, heart, kidneys, everyhting else was fine but his liver. We all know he died of liver failure due to Hep C ( transfused as a baby )So he had it 55+ years. But they said septis was cause of his death. Why not write Hep C? They would like to keep this whole nasty bug hush hush.

God Bless, Sue

[BostonGirl]

Hi Kalio;
        Yes we should all be writng our Congressmen and making a fuss. Hep C is called the silent killer and we are the silent victims! Nobody wants to talk about it. I hate that!

I've had parents tell their children that they are not allowed to play with my girls because of my Hep C. ( I"ve told them ALL my children are negative and husband too!) But they still do not want to be around us! This is nonsense and ignorance all  because the government will not educate the country about it. Pisses me off!

Back in the 80's you certainly didn't see AIDS patients silent and that is why they have come so far to date.

I couldn't agree with you more that the doctors still don't know the whole story of Hep C.

When I was first diagnosed 2002 I had a good biopsy, three different liver docs all said the same thing, nothing to worry about, get on with your life, just don't drink.

Now, I am told, we need to watch for several other diseases that are triggered by the Hep C. Actually, the list is quite long. These so called specialists are now just finally admitting it's not just a liver thing, it's systematic. We all knew that! HA! It's about time they caught up with our thinking. huh! Sue

[kennedge]

hey man

can you shoot me an email at this name at aoldotcom

thanks

[cuteus]

if anything is learned quickly is that HCV is never 'dormant". as long as the virus is replicating, it is affecting us everyday. Mild liver damage does not make HCV 'dormant'. Maybe the body is keeping things stable, and averting progression, much like the levies in NO, but it can't do it forever.  
I was not clear if you had tx 10-15 yrs ago. For dormant did you mean suppressed virus?
this was not clear:"QUIT ALCOHOL 2 YEARS AGO THEN TEST CAME BACK ACTIVE HCV...DORMANT FOR 20 YEARS..10 TO 15 YEARS AFTER SUCUSSFUL TX IS PREDICTED THEN POSSIBLE TRANSPLANT FOR ANOTHER POSSIBLE 10 YEARS..."
not sure what your stats were. Memory is not as it was 30 yrs ago..
take care