Why go thru it again...

I have been off tx for over a year now, phase iii trial for virimadine & i/f, sides were not too bad but i still have stomach problems and i had 4 teeth pulled...

this was my first and only tx, biop taken 2 years ago showed stage 2/grade 2, my genotype is unknown... i dont get why people would tx over and over, i think if you dont clear first off, your odds go down to like only 10% of it working... i can understand if you are stage 4 etc but other than that, why bother??? just try and take care of yourself and get busy living...

i have  a friend who lost her 10 year old kid in a car accident years ago she is severely depressed & messed up because of it, yet her docs continue to put her on tx even though it has not worked 3 times already she has had severe injection site reaction problems, hospitalized over & over had 2 strokes, water retaintion etc etc i asked her what her biop says (stage/grade) and she doesnt even know, she still drinks heavy and these docs just keep on keeping on gotta make the donuts who says drug companies & docs dont keep each other rolling...

the whole thing makes me ill...

[bobbyullc]

AMEN,

this is an extreamely controversial topic here. i waited 9 years to treat and the odds went from 15% to 50% and the drugs got better. i am stage 3.3 or i would wait anouther 9 years untill the treatment got better still. my dr. thinks in 5 years it will be a 4 week duration with almost no sides and 95% chance of svr. his opinion only. i have given up 48 weeks of my life sitting on the couch sick. if it does not work i am waiting NO MATTER WHAT. at stage 2.2 you have a lot of options. it is a personal thing but all avenues should be explored.

i wish you all the luck in the world and hope you keep in touch.
bobby

[FlGuy]

This is a frustrating disease, especially for those of us who do not clear the first time, the second....the seventh.  It's the end game that scares the stuff out of me. Like many others, I'm signed up to do it again.  Call it the triumph of hope over experience, a fools game, a ticket to tx misery whatever.  For me, I call it survival and avoiding an ignominious end.  What the difference between 2 and 4?  A lot, and you should be glad you're not there yet and do what you need avoid that destination. Good luck in whatever you decide.  If you have loved ones, you are not the only owner of your health.

[bobbyullc]

ps. the tx may have even dropped your stage damage a bit. it happens often.

[NYgirl]

I am hoping that worst case scenario and I don't achieve SVR that my stage will drop.  Currently at beginning stage 3 I would feel much better if I were a two = and there is a good possibility that it could happen.

I know you aren't in to it right now but they seem to be having excellent success with Infergen.  I would probably do that the next time and if that didn't work then be forced to wait for the new meds.

but I am a very proactive person who really just wants this disease out of me, so take what I say lightly...I just can't ;)

I'm sorry you had such a rough time.

[Mister beagle bailey]

I had the same problems with my stomach first week on tx and later ended up in the ER.  My dr gave me LACTULOSE SOLUTION, USP and it really helped me.  It's not bad and I take it every day, tastes like honey.  With my stomack upset I also had pains in my chest and side and though I was having a heart attack.  

Beagle

[ohgreat]

nygirl: Dont get me wrong, My doctor always follows that up with a "BUT...You need to focus on you and the now...not the future..."  I should have said that.

Oh the lump.  Man its just as hard and knobby as ever.  And yea, I have been rubbing it like crazy.  One good thing about the postponed treatment... Like a kid who frantically brushes his teeth before going to the dentist, I quit smoking last week.. so.. er.. they wouldnt notice?  Well I havent smoked since Thursday, so thats something.  And I dont feel nearly as much tension around that hardened area in my abdomen either.

And after reading that report about smoking and liver problems + HCV I dont want to.  For the last 4-5 years I smoked Heavy and would stay up for nights on end to get software projects done.  That couldnt have been good.

Either way I have to treat I think.  From what I have studied the chances of 3a's clearing are severely compromised by Fibrosure Tissue.(so why wait for me?!)  So Either my liver is healthy and I need to treat it... or this hardened knoby thing is about to go and I have no choice but to try treating it.

I dont see much of a choice.

[Dale_Ray]

I really understand every word you are saying. I am on my second treatment. I didn't have any health issues or concerns except that I was driving myself crazy with the fear of passing the plague on to someone else like my grandchildren. When you start locking up your toothbrush and not hugging your kids because you cut yourself shaving a few days ago or fear of intimacy with your spouse it takes its toll and will help you make the decision to rid yourself of this life altering virus. I am probably overly paranoid concerning this but health wasn't my driving force it was the well being of others around me. Remember my two cents won't buy anything these days. Best of luck. Dale

[Mister beagle bailey]

Your 2 cents my friend will buy a lot on this board and your not paranoid as I believe many of us have gone through what your talking about, worrying about giving the virus to our loved ones, etc.  Dale remember their are many who treated more then once and are cured now.  I believe you'll be cured also my friend.

Beagle

[ohgreat]

at one manic point a few months ago I was convinced that I gave this to one of my cats.  If Jim Morrison is the Lizard King then I am the King of Manic Panic.

[cuteus]

it looks like fear is the worse hcv side effect to date, and doesn't let up. It even lingers a bit after SVR. Freaking virus!

[tmangeles]

I agree..I did not respond back in 2000-2001...I am 49 yrs old and dont want to waste anymore time trying to rid my body of this ****..The sides are worse than the disease...In some people they are life long damage to their bodies and minds..I am a 1b...I dont read any good responses from people with 1b...I think if you diet correctly and exercise and get plenty of rest...you will die of something else first..

[ohgreat]

(the cat scratched me..nothing weird)

[ohgreat]

you said..."my dr. thinks in 5 years it will be a 4 week duration with almost no sides and 95% chance of svr. his opinion only. "

well... unless you have my doctor then it is not his opinion only. ;)  My doctor pretty much said that same exact quote.

but some people have to treat.  If I have to treat soon based on what my bx I take next week says. then symptoms be damned. I will be proud to join the ranks of these brave people who have gone through this before me.

[Mister beagle bailey]

I sorry you had a rough time and given your friend's problems, I don't think should be treated again until a better drug hits the market and percentage is higher for a cure.
Hope your doing better soon.

Beagle

[FlGuy]

How's the lump today? I guess that you are ok with the bx wait until next week, huh.  Kind of stinks that you had a build up of anxiety just to have it delayed a week.  In a few weeks you'll be joining the bx vets who advise new people 'it's no so bad'

[NYgirl]

Remember...he has no first hand knowledge and said he THINKS

my dr. thinks in 5 years it will be a 4 week duration with almost no sides and 95% chance of svr. his opinion only.


I always worry about people reading and say "wow I'll just wait for that drug - five years is really close" and don't GET IT that that drug looks promising...but it ain't here

Current drugs have a 50/50 chance which is so much better than just a few years ago. But nobody can guarantee that these drugs WILL EVER pan out. So people have to judge by biopsy more than anything.

I guess it's a will of how much you want to get this out of your liver sometimes and personally I wanted it OUT. OUT OUT OUT.

And taking a gamble that I wouldn't get worse before they did approve something with better odds just didn't seem worth it.

[bobbyullc]

thanks for the info. i am 3.3 and could not wait. some choose to treat at stage 1 or 2 and that is their personal choice. i hope you bx gives you options that you can live with. i do believe in looking at ALL the options before going into this tx. pray our drs. are correct as 3.5 million in the US need tx.
bobby

[willing]

anyone reconsidering re-starting tx (and that includes me) should read through abstracts S1060,S1061,T1808 and T1800 from last week's DDW conference. A copy of most hcv-related abstracts is <a href="http://www.soe.ucsc.edu/~afyfe/167923Xy-Zq/hcv_abstracts.pdf">here</a>; use the pdf-reader's search dialog (click on the binoculars) to find a specific abstract.

The results from the REPEAT study are preliminary but, to my mind, disappointing. I just can't see enduring another 48 weeks for a 30-40% chance. On the other hand, for those whose stage makes all the new therapies look a bit irrelevant, the results reported by Kaiser et al in abstracts S1060 and S1061 look fairly promising. If you're willing to sign up for 72 weeks of frequent consensus ifn dosing, it looks like you can get your odds up to 70%. For everyone  who can wait 5-8 years, and I hope that includes me, it makes a lot of sense to wait.

[hep62pj]

ahhh im ok, i did not have many sides from tx but this stomach thing continues to bother me, i have posted about it here before just a long lingering side effect i guess, doesnt matter what i eat or drink (or dont eat or drink haa) it is not all the time but enough to bother me, pepto helps ... my doc says there is nothing wrong yea right haaaa maybe it is all in my head...

my friend lost a bunch of teeth too, i think the i/f weakens teeth already messed up from years of drug/alcohol abuse...

i had my one & only biop 2 years ago, i probably wont get another one for a few more years i know it has been over 20 years since i got this and i was a very heavy drinker just about all that time so if i only at stage 2 by now i dont expect much change in my biop in only 2 years and yea maybe the tx did improve things a bit...

i check in here once in awhile, best site i have found yet and some real cool people, i have posted on other sites where you are pretty much attacked if you happen to mention you had a drink or dont believe in re-treating ... or any kind of addiction problems which lots of us have, makes this stupid disease that much harder to deal with... i actually had someone tell me that smoking f's yer liver up too and i need to quit, JHC i am having a hard enough time not drinking or doing drugs haaaaaaaaaaaaaaaaaaaaaaaaaaaa

thanks for replies people...

[hep62pj]

yea it is a waste, she doesnt even care anymore ever since her daughter was killed, she is on all kinds of anti-depressants too and just drinking all the time, i cant understand why these doctors are even treating her she doesnt even know what she is taking or why it is like they are just using her to make $$$$ from the drug companies or something, it is not right...

she is wacked i have tried to talk sense to her but she is usually so out of it on something its a waste of time...

pretty sad i know...might sound could but i just try and stay away... i got my own addiction problems, there are people i just need to stay away from i learned that a long time ago

[willing]

I am sorry to hear about the pain this has caused you. So much of what passes as difficulty here is mere annoyance compared to loss or harm to a child.

[GoofyDad]

well said.

[MissMiss]

Amen to that.

[NYgirl]

For every drink your friend has they need to realize...during the time that alcohol is in their body...the treatment is not working and the virus can begin replicating once again.

Anyone who drinks shouldn't waste their time.  Plus (and take it from me here) the damage that is being done to their liver is so magnified by the alcohol and virus - treating really might not matter too much anyway.

The damage being DONE is more than the damage being reversed.

It's just really honestly a stupid waste of time an energy to drink and do treatment - but we all know that.

Still...it bugs me because that is the type of person who will say treatment sucks and doesn't work...dn't waste your time...and what people don't know is that the tx was working fine it was the pint of Jack being shoveled in with it that did not.

Tell your friend please if they value their liver at all...as hard as it can be (took me 200 tries God knows that) it's the ONLY way it can be done.

[NYgirl]

Antidepressants are wONDERFUL they really DID help me...if she is not on one maye it's wort a try? Maybe she can think of that working instead of self medicating?

I'll say a prayer for her because honestly with this type of situation there isn't much more else you can really do.

[fishdoc]

Just an fYI, the consult Dr. said my odds go right back to square one if I have to start treatment again in six months....

and I am pretty sure I gave it to a Bullmastiff puppy... I was trying to treat 13 puppies with poor immune system (***** had 15), they had coccidia, and I was giving injections, pup wiggled, and I went clear through his skin and into my palm, only way to get the needle out was back through his skin.  He died at 18 months of hepatitis.  Now I know dogs get their own brand, but give me a break, coincidence?  whens the last time any of yall had a dog die of hep?

[willing]

I think you can relax on that one : chimp is the only species we can infect.

[ohgreat]

thank god i dont have a pet monkey!

[fishdoc]

can man does, and he abuses it.............;)
I'm sorry, I just can't seem to control myself...

[can-do-man]

says......can man does, and he abuses it.
------------------------------------------------

first, i don't consider you a chimp.

Second, I have not got to abuse you yet.:)

Hope all is well

[fishdoc]

Hey, there you are!!  If ya saw the hair on my legs, you might change your mind... interesting observation, OK< hair pretty much everywhere goes grey, we're not all spring chickens, ya know what Ima talking about, but I have no grey in the pits or on my legs.. now thats wierd.  I gotta tell ya man, this itch is crazy.  30 minutes after riba, it hits, by 40 minutes I'm pacing the floor.  This weekend I'm going to reschedule, so I take at 8 and 8,then I can just take the bennies with the 4 riba..

[can-do-man]

you said..... but I have no grey in the pits or on my legs..
-------------------------------------------------------------
Guess that only leaves a couple other places for the grey then.

As for the itch, have you seen about getting a rx that might help it.

All that hair, then the itching, if your jumping up and down and start swinging from trees, i might have to recosider that chimp thing.

[strator]

Can commented...Second, I have not got to abuse you yet...
So you waitin for fishing season or are you on "antabuse".

[fishdoc]

Hey dude, hows the bump?  Taken on a life of its own yet??  You know, when I start throwing $hit around, yall better duck!!  Should we put a new one under SX: simian behavior... cause if you remember, rocker and JMJM, they are definitely on the zoo's higher primate diet...

[OnAPrettyPoison]

Can - I signed off early last night and caught your post this evening when I got HOME FROM WORK at 7:30! Yuck!  My father takes the pill too, has for lots of years now.  Still fills his dessert plate up at the senior socials, he just can't help himself!  It seems to keep it in check quite well.  I worked in the yard this weekend :o) and got alot done.  However, I got in fire ants, and those suckers are going to take forever to heal because of the low white blood cells.  Most of them happened Saturday and they still haven't come to a head.  Before, that would have been done by the next morning.  

Oh Great, good thing you don't have a pet monkey, you would rub his liver and he would bite the snot out of you!  Cats don't like their liver rubbed unless they are sleeping.  My dog doesn't mind at all, any time, any where, he thinks I am scratching his belly!

[can-do-man]

No i been waiting for you to get the tires, see thats done. Now what about putting some gas in the car? And no you don't have to 'feel' the tank up. Might make people wonder even more.

Your son is lucky to have you for a dad, Take care pops.

[can-do-man]

Get some rest gal. Hope this overtime thing don't get to you. You take care of yourself now.

[strator]

fishyscientist-Well the pain subsided enough so I could work today, only had to go in for 4 hrs but it was physical. Antibiotics seem to be doing good work, but I'm still trying to figure em out. Says take 1 4X a day, every 6 hrs. Even if I get up at 6 instead of 6:30 that means I gotta wait til midnight for last one.(Today I just took em every 4 hrs.) Looks like the sub sack is filling up- according to Dad it's preparing to rip!

Now here's the kicker..Brought em home the other day after all the running around, feeling like chimp doo doo, with the intent to lay down for a nap before heading to pick a guy up. Reda the instructions and it specifically says ...do not lay down for 30 minutes after taking this medication...Never heard that one before!

Can 'dew on the morning grass'- Okay I got the tires. I'll try to get the kid to clean it for you. In fact maybe I better pencil you in on the schedule for a long time,  so he can't be asking me to borrow it. "Nope sorry kid, Can Man'z got the car tonight."
Hope your well, your invaluable here.
Don