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Avatar universal

Hep C for 47 years plus now, had biopsy 12 years ago...

I have had Hep C from a transfusion back in 1964 due to a bomb explosion when I was 17 years old & had a biopsy 12 years ago because the blood I donated at work said my liver enzymes were slightly elevated. The biopsy showed mild Hep C and I was stage one with no liver damage after having this for 35 years at that time. I am now 65 and now have had Hep C for 47 years now & I have no backbone to get another biopsy, because I am scared that if I progressed any, I will do away with myself in fear. I am very scared to use the new treatments because interferon is still used & it, according to my eye specialist ( I have only one eye), the interferon has been know to damage the optic nerve. I still feel good, & seldom get tired, unless I get a cold or don't get enough sleep. I was told at the Biopsy results back in 1998 that they very much doubted that I would ever get cirrhosis, due to the fact of having it for so long then &  at that time, only had a stage one. In other words, they said that people like me, at that time, will most likely will always have Hep C, but most likely not die from it, but something else. So, to get a biopsy & me being such a pessimist, & get bad news, I would rather get hit & killed by a truck while walking along side of the road, like I do almost every day (daily walks). Sorry for sounding so gloom, but I can't handle these things...Barry in Pa.  ps  I supposed after I get a response from here, I will feel much worst...
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Avatar universal
Good luck and keep us informed !  Oh..in the future it would probably be easier for you  to just reply on one post to all you want to reply to.
Best  to you.....
Will
Helpful - 0
872544 tn?1319457565
Thanks for your response....I feel I owe it to my Gastro to see him after that biopsy. I may then go to a Hep blood Dr. for treatment, as you say to go to a Dr. who is most experienced. I am learning more here on this board from all of you as time gos on. So, I got to go now...again...Thanks...Barry in Pa.
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872544 tn?1319457565
Diane,
   I am hoping all is well with you as well as everyone else here. After reading all the replys I have received, I decided to grow some backbone & get that biopsy. After 47 years & four months, I am still a Stage One. I will see my Gastro Dr. this coming Thursday to see what he says about treatment. I once was told way back 13 years ago that one person took the interferon & their viral load skyrocketed, & that person was taken off the treatment immediately! I personally don't think that viral load ever came down..so..yeah...those things do scare me. Sure I am a guy, & they say I can be tough, but these medical things do make me weak. Anyway, thanks for your support & I wish you & every one the best.  Barry in Pa.
Helpful - 0
872544 tn?1319457565
Hello,
   Hope all is well with you. I promised myself to thank every single one here for their help. I did get a biopsy, since you guys scared me into it (which i am very gratefull for) & after 47 years & four months, I am still Stage One. Going to see my Gastro Dr. this coming Thursday to discuss if I need to be treated now or wait/  Not sure what to do. But, I did put on my big boy pants & got that biopsy, thanks to all of you people! Thanks again, Barry in Pa.
Helpful - 0
872544 tn?1319457565
Hello,
   I promised myself to thank everyone here for their help. I did have a biopsy & I am still Stage One after 47 years & four months. Going to see gastro dr. to discuss treatment, if any at this stage. I am wishing you & every one here the best. Thanks again...Barry in Pa.
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Avatar universal
I commented abut 5 min ago ,however you will see that comment up above before you last  replies....not sure why ?
Helpful - 0
Avatar universal
Moderators...the forum is acting very strange...just put up a post  a min. ago on this thread responding to the OP and it showed up  as 5 hrs.ago above the recent posts.
Helpful - 0
872544 tn?1319457565
Hello,
   I promise myself to thank everyone here in this group for their replys & guidance. I did have a biopsy & I am the same as I was as the last biopsy 13 years ago, Stage One. I have had Hep C now for 47 years & four months. Going to see Gastro Dr. this week for discussion on treatment options. Not sure if I need to do it yet, as I still fear interferon side effects. I hope you & everybody are fine or soon to be. Again, thank you so very much for your time...Barry in Pa.
Helpful - 0
Avatar universal
That is excellent news that you have not progressed currently past St.1 fibrosis,and yes there are Interferon free trials going on presently that seem to be having quite good early results.
However, when these will actually be on the market is an unknown,,there is speculation it  could still take between 3  - 5 years.
Possibly ask your specialist when you see him/her what their experience is with treating HCV,as yours would be a rather unique case of being 64 ,infected with basically no damage.
If there are no other serious health issues(especially heart ,as these meds can sometimes aggravate existing heart conditions) you may want to consider treating nowhowever with no damage, you and your doctor may consider waiting as an option.

That said in 3 to 5 years you will be 67 or possibly 69 if it is going to 5 years  and many doctors are reluctant to treat at that age,and if in fact at that age there is still no damage,treatment may not be warranted at all...(however one seems to never quite know when or if the damage will progress faster),

So again   the best advice I personally would give at this point is to make sure who is advising you is very experienced..

Best to you...
Will
Helpful - 0
872544 tn?1319457565
Hello,
   I am thanking everyone here for their guidance. After thinking about what I have read here, which scared the bejeepers out of me, I decided to get a biopsy. The results were the same as 13 years ago, Stage One. I have had hep c for 47 years & four months now. Going to see Gastro Dr. this week to discuss possible treatment options. He may even tell me to wait for the interferon free drugs that will come out down the line. Not sure what to do? I do value your opinion as well as others here. I hope you & everyone here are fine or soon to be. Again, thanks for shaling me in to some sense...Barry in Pa.
Helpful - 0
872544 tn?1319457565
Hello,
   Thank you very much for your reply. I did get a biopsy & I am the same as I was 13 years ago, Stage One. I had had Hep C for 47 years & four months now. Going to see Gastro this coming Thursday to talk about possible treatment options. I may or may not do the treatments. Why rock the boat? I need to do more research on this thing. If you learn anything, keep us posted. Glad to read you are doing fine.   Barry in Pa.
Helpful - 0
872544 tn?1319457565
Thanks for writing to my post. How are you feeling? I did get a biopsy & I am still a stage one like I was 13 years ago. Had Hep C for 47 years & four months now. Going to see gastro Dr. on Thursday to discuss possible treatment options. I don't like the Interferon side effects I have read about. Aren't there new drugs on the horizon & do I need still another biopsy when that happens? Thanks...Barry in Pa.
Helpful - 0
Avatar universal
And you might get to be dointime3, so it's great that you have retained your sense of humor about it.

DT  
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Avatar universal
I read all of your replys & wish to thank you all so very much! I decided, after reading & thinking about what was said here, to delevope some backbone on this & I asked my wife to call my Gastro Doctor to set up with the local Hospital here in Harrisburg, Pa. for a biopsy on my Liver soon, maybe as early as next week or so it will happen. You guys are right, delaying is asking for trouble, & I would like to hang around in this life for a long time, if it is meant to be. Sorry my original post was so gloomy, as I get that way worrying so much. Again, thanks for all of your support & info.  Barry in Pa.
Helpful - 0
1225178 tn?1318980604
One thing I didn't see anybody comment about is the fact that whoever you talked to 12 years ago about this disease didn't have near as much info to base their words on as there is now. They've only known about this disease around 20 years. So if I were you, I'd find another source to base your decision on.

I've been on this forum for over a year and a half and never read about someone loosing their vision, so it must not be too common of an occurance.

If you wait till you have physical symptoms before getting a biopsy the damage could well be very advanced and treatment won't be an option. I have heard that end stage liver disease is a horrible way to go. Why chance it?

Diane
Helpful - 0
Avatar universal
I suspect by the mere fact that you reached out to post here that you are subconsciously hoping to be nudged into doing what you know you should do; and that is:  follow up on this with your doctor.  Please don't let fear box you into the corner that Trish mentioned.  Check out your options - all of them - and then decide.  

I'm 56 years old and, most likely, have had Hep C since I was 2 days old from a blood transfusion.  I had a biopsy and I did 48 weeks of treatment (successful) and none of it was so bad that I would not do it again if I had to.  

It's a mind set that you can change...
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Avatar universal
I have had hep c since 1970, just treated this year  and I really did not need to stage 1 no fibrosis. This is a common health problem for people our age and millions out there have it and don't know it. the treatment was tough and I made it thru OK I'm 59 and people who are older do it everyday.
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Avatar universal
Then you can change your name to dointime2
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Avatar universal
I think I understand where you are coming from because I also stuck my head in the sand about hepC.  I waited for 9 years after my ex was diagnosed with hepC before I asked to be tested for it.  At the time there was no SOC as we now have it, so my thinking was - why get tested if there's nothing I can do about it anyway except be scared to death.  

So I understand that you don't want a biopsy (who does).  And I understand that you don't want to take the risk of going blind.  So don't have a biopsy and don't do the interferon.  End of.

However there are steps that you can take now to hopefully lessen your fear of the future and ultimately find your way through.  Get the non-invasive tests that are available and monitor your liver health on a regular basis.  Just do it.  Don't be thinking about what will you do if  .......  You can cross that bridge if you come to it.  Hopefully the tests will be reassuring and help you to stress less about it.  As curiouslady says, non-interferon tx is on it's way, so you just need to get through the next 3-5 years and you can tx then.  During the wait, just look after yourself diet wise and don't drink.

Good luck,
dointime    
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Avatar universal
You may get worse than you bargained for by doing nothing. The longer you wait to do something, the more risk you put yourself at.  It's an option to avoid treatment IF you know your condition and you stay on top of it with regular biopsies to know what your choices are.  You're potentially backing yourself into a corner where you have no choices left.  Once you hit a certain type of cirrhosis, treatment becomes risky to impossible.  If you wait too long, you're then susceptible to liver cancer once your liver disease progresses to a certain point.   You risk putting yourself in the position of ending up on a liver transplant list hoping you'll get a donor and going through all the issues that come with a dying liver.  You'll live constantly in some kind of fear with NO idea what is brewing inside of you.  All that one the one side ... and having a biopsy and making choices based on knowledge on the other side.  I would at least get a biopsy so you know what choices you have remaining and hope you still have some.      

Trish
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Avatar universal
I like your post!  I am 57,  I also have had hep-c for 40 years can't wait to do the interferon free tx but if need be I would the old tx.  I have never done well not moving forward.  Want to celebrate with you older folkes in a year and a half Thanks for your participation.
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Avatar universal
BTW I am 64 and had an infection for 40 year.  I also don't want interferon.  I became virus free in two weeks.  I don't know if I will hold it for anothr year and a half but it sure beats sitting around waiting for the reaper.  
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Avatar universal
I am 64 and have been in my all oral trial for a month.  There are several of us older folks involved.  There was no biopsy to get in.  Everyone I know in this trial is getting great results so far.  Significantly, there have been little or no side effects other than mild fatigue.  Unfortunately, we will not know if we have cleared for good for another year but the signs are good that this will occur and we are all overjoyed that we have dodged a bullet.  The particular orals are intended as omnibus drugs; not favoring one GT over another.  The only problem for recruits is that, in enrollment, you have to have a physical condition that says you could withstand interferon and ribaviron treatment if you had to go on rescue treatment (that is, if the oral drugs do not work, you have a breakthrough of virus or whatever).  Of course, you can drop out at any time and take your marbles and go home.  If you were of the mind you wouldn't treat anyway well . . . Anyway, there is a new Pharmasett study that is readying to start.  I don't know much about the others but I would be very careful.  Some drugs are more powerful than others and they have different resistant barriers.  Do your own research if you are keen to treat but don't want to be sick.
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Avatar universal
Nope.  They will sometimes do fibrosure.  Mine did.  The thought was why  a biopsy just to get into a trial.  The only time it goes to a biopsy is when results are equivocally cirrhotic.  They tend to not want cirrhotic subjects at this stage of the game in trials of all orals.  
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