Why

[tulips27]

As you all know Im starting tx end of year. Make a long story short every person I spoke to said why give up a year or two of the best years of your life for tx. Why be a guinea pig? Just to add on a few years to your life when your older? Now is the time to enjoy them.

Im so confused they all claim I will get other illnessess from tx and be sorry I ruined the best years.

Im pretty sure I know the answers to all of this but hearing this from people that love me are very disheartening.

[FlGuy]

We'll see how great that U.M. liverhead is in about 7-8 weeks!

[tulips27]

Im 2/2 mild peiportal fibrosis no bridging......Dont know what road I will take yet. Maybe SOC and if that doesnt work- a phase III trial. Have a great liverhead here at U of M that I have been seeing.
So we shall see.


Thanks for your input.

[sfbaygirl]

I agree with Jim,  do not take tx lightly and beware of trials. I know I couldn't be in a trial due to my need of rescue drugs.  Stage two could last a good long while, and as I know my stage one overlaps with stage 1. Perhaps your's overlaps with stage 3.  If you have a great liverhead, some of them have Fibroscan machines which test more parts of your liver than a biopsy.

[jmjm530]

Your friends make some very valid points. All of them.

As a stage 2 female, diagnosed in the 80's, your hep c has progressed very slowly. This is not unusual, especially with females who got infected when younger. While no one really knows, it's then very possible that you will die from old age and not hepatitis c.

If I were in your shoes, I would wait at least a year or two before making a decision. By that time there will be far more data on some of the newer trial drugs like Teleprevir that currently promise double the SVR rates with half the treatment time. As explained to me by my liver specialist, one year is just a short blip in the viral cycle.

As to a trial that "Mre" mentions, I also would caution you about any trial with only stage 2 liver damage. Why be a guinea pig when you have time to wait to see how the trial drugs work out? If all goes well, Teleprevir, for example, is expected to hit the market by 2009.

Of course there's the other side to the story that I'll let others take care of. All the reasons to treat now, rather than wait. And, then there's the social consciousness issue of being in a trial, i.e. helping those that follow, etc.

Good luck whatever you decide to do, just don't be scared into not treating by the worse case scenariosyou read here, but also do not be scared into treating by the worst case scenarios you will read here.

But speaking of 'worst cases' -- not really worst, but just my own -- yes, like your friends suggest, treatment took around 2 years out of my life. Couldn't work, lost many friends. Life pretty much stopped. True, I was cured, my liver probably healed, but it aged me beyond the two years. Do not take treatment lightly.

Again, your hep c is moving very slowly and with proper monitoring under a good doctor you have time to wait, if that is your choice.



All the best,

-- Jim

[sfbaygirl]

Such heartfelt responses make this an incredible thread. It is so hard to know what to do, when to treat and how lucky we are to have one another here on this board. It may sound trite, but it is so lonely in our decision to tx, not tx and NO ONE but those of us that have Hep C know how it is. Our most loved ones can only imagine. I thank everyone here for the help, support and love I have recieved here.

Mike;  So sorry to hear of your friend. I think of my friend I lost to liver cancer every day.  It does make us more humble and grateful that we are still here, doesn't it?  I have missed you and glad to hear from you again. Thanks for your kind words to me.

Linda

[mikesimon]

Thank you for your kindness. It was a heart wrenching experience to see him like that. This man was 5'10" and weighed 85 pounds just 2 weeks ago. He got up to 95 pounds but was in constant agony for the last 10 days. He's at peace now.  Mike

[tulips27]

Thank you all!!!  Youve been so much help.


God Bless All of You!

[PSP-n-Me]

I am sorry you lost your friend - My Son In Law lost his Father last year to Alcoholic ESLD - they discovered it a few months before he died - He never stopped drinking, so sad...

*dip*

[shastri20032003]

as i have heard so often before on this forum...its your liver..its your life...so do what you feel is best for your liver,not what your friends think is best for your life....ultimately it is your liver and your life

Just ask your friends, if the shoe was in the other foot,how would they proceed? Irrespective of what they respond, i am sure they would take the same direction you are taking

the time on treatment will hopefully go fast for you once you start,just pray in the Lord and things will work out for you

just one word of caution...I reiterate what mremeet has to save above..be prepared and knowledgable before going for any trial or before starting tx..it will make your treatment more managable

Wishing you the best

[dogsledder]

I was 50 when I was dx w/HCV. I am now (almost) 56 and now in week 26 of tx. I was asymptomatic...no side effects, good bloodwork, stage 1, VL 4 mil, great energy activity, etc. I knew a lot of folks who had treated. Some beat it, some didn't. The disease progresses along, although differently for everyone. Some folks will pass from old age before the dragon rears its head. In others the disease will move rapidly. I figured I will not be any healthier than I am now and decided to take the tx through a clinical study (HCV 796). The study drug has since been stopped due to adverse liver function results in some patients (ALT/AST in the 400's). So far I have been very fortunate. I was UND at week 6 and my AST/ALT is now 17/23 and still UND. I have gone (and going) through most of the sx's..severe body rash, depression, fatigue, brain phog, anemia... I was on Procrit since week 8. My HGB is 10.1 and I am aware of the FDA Black Box Warning. My brother passed from HCV/liver cancer 4 years ago (he was 55), fueled by drinking. I stopped drinking, etc. twenty years ago, which I am sure saved my butt and my liver. If you can, find a local HCV support group. Some hospitals/clinics support them. I found one in my area just by using Google. Good luck.

[meki]

Everyone has to do this alone...

No matter how much family or support they have - no one else can possibly understand.

Do not listen to anyone who has not been there! Because they cannot understand the feelings, both emotionally and physically.

You need to do what is right for you.

No matter if you have friends or family --- the only person you have to wake up to in the morning is yourself.

You have to decide for your own life --- and either way is right - if it is the right decision for you.

Once a grieving mother told me --- when I told her I understood what she was going thru... she said "Until you have lost a child, you cannot understand - until it is you - in my shoes, you cannot see or feel the depth of the loss that I have - but I thank you for taking the time to think about me and my loss."

I don't think I fully understood what she meant until HCV interrupted my life.

In a way - what she said - fits precisely in the same manner.

No one can understand the feelings, the turmoil, the decisions that need to be made - until they have gone through it all.

No matter how close they are to you - they have no idea what it is like.

So you will have to take your own life in your own hands - and carefully choose.

Both paths hold uncertainties - both paths have good points and bad points.

May your choice be right for you --- and you alone.

Hugs,

Meki

[ladybug52]

I have to say that some of my closest friends I have met through this forum. I'm lucky because I have a large family and had support...but know one but the people here know what it's like. Whether they are txing or not, the many wonderful people here have been a lifeline to me. Many who have a family and friends do not have the support they need.
People will surprise you, perhaps your own strength will surprise you even more. It's disappointing that your friend doesn't agree with you, but hopefully will be there for support anyhow.
My father's girlfriend (he's 81!) did not approve of the choices he made for end stage renal disease, but she's still with him and still loves him.
Good luck sorting this out...
Bug

[mremeet]

Not trying to dissuade you from enrolling in a drug trial, but make sure the drug trial you're getting into is appropriate for your risk/reward tolerance. Make sure you're thoroughly educated on what's going to happen during the trial and the drugs involved. Know ALL the rules and restrictions. Know the odds if it's a blinded trial. Don't sign up to a poorly structured trial which basically just uses you as preliminary statistical cannon fodder (with no real chance of SVR-ing). Not all trials are appropriate for your risk/reward tolerance, believe me. And early phase trials (phase 1 or 2) usually won't be curative, and can even saddle you with resistant strains of HCV that will persist long after ending the trial. These resistant strains may not be responsive to a future course of the same drug(s) as a consequence of a too brief initial exposure to them (especially as a monotherapy). There can be other problems too, like rash or possible serious long term consequences (that's why it's "experimental"). All of these considerations are especially salient in the event you have an easier to treat non-type 1 genotype (where treatment times are halved and SVR rates are doubled compared to type 1).

Bottomline is don't go into treatment blind. Know what you're doing and learn all you can BEFORE enrolling. Read the fine print very carefully, ask questions. I enrolled in a drug trial and things happened to work out for me. I'm grateful to have had the opportunity, it probably cured me.  But it doesn't always work out that way for everyone, believe me. Best of luck...

[Trish77]

tulips, can I ask you a question?  Do they consider it you being a guinea pig because you've chosen a drug trial for treatment?  The reason why I'm asking is that ... you already know you want to treat regardless from the sounds of it, you would just like to have some support in your corner when you do it.  So even if it was existing drug therapy, you'd be treating and going through the same thing.  And drug trials...well, the treatment you'd be going through anyway just might help other people coming along.  Do they understand that or is even that beyond them right now because of their overriding concern for you?

And tulips....I think you'll find that they'll BE in your corner, some of them.  They just don't understand and they think they're offering you advice that is good for you, they're truly concerned for you and their intent is honourable.  I'm sorry it's not helpful but it's well meant at least, yes?  Don't real friends do exactly that?  And in the end... real friends stand beside you once you've made your decision and explained why that is what's best for you.  And I think you'll find that you WILL have support.  And I think you will find support in surprising places.  That has been my experience through many trials in my life over the years. And otherwise...this is what I believe...you will find the strength within yourself if you truly want to.

I wish you strength, support and good luck, tulips.

[orphanedhawk]

Although I am fortunate to have someone close to help me, even he couldn't really understand how it feels to go through this. That is what is so great about the forum.
  I believe you know in your heart what is best for you. That is what your friends should support. I know why I decided to do tx.  I know others who have chosen not to. Both are the right decisions.
  Hey, if we could do it, you can do.  Good luck tulipia,                OH

[tulips27]

You are all angels from above. Thank you all not just for today but beng so supportive everyday.
Mike ..Im so sorry you lost a dear friend..my sympathies go  out to you and his family. Be well.
Fl/Guy-Your are so right as always in everything you said.

I just cant say thank you enough.

[tulips27]

Thanks so much for your input on this. My mind has been made up for a year now. Just very disheartening that the few people who are close to me think "the guinea pig syndrome". Im totally aware of ALL the facts and I know they cannot fathom this nor have the complete facts.
I have the facts and ready to go with tx no if's and's or buts.

Guess it will be a long road alone.. I can handle it just didnt think I WOULD HAVE TO GO IT ALONE.
Thank goodness I  have all of you.
Mike, FlGuy THANK YOU SO MUCH FOR THE INPUT>

[mikesimon]

I treated for 3.5 years. I don't feel like I lost time - I traded the 3.5 years then for the time I have now. Life isn't always fair or, at least it doesn't seem like it is. Yesterday I lost a long time friend to alcoholic cirrhosis. He stopped drinking one year ago when his liver function deteriorated to the point of hospitalization. A few weeks ago he took a down turn and he died yesterday at 5 pm. Seven years ago he was worried that I was going to die but here I am and he's gone. He needed a transplant but he had to be sober for a year and by then it was too late. I always look around and see that I don't have it nearly as badly as some do and though it's maybe inappropriate to gain strength through another's misfortune I do at times. I am reminded that many have it so much worse that I. Of course there's no pain like my pain but nevertheless mine isn't really so bad when I stop and look around. I wish you good luck and peace of mind whichever way you decide to go. Mike

[FlGuy]

You already know, having been diagnosed but not yet treated, is that no one can imagine the shoes you are in unless they've worn them or they are fully knowledgeable about hcv (like people in the health industry) HCV decisions are difficult sometimes, but always pretty lonely.  I decided a while back, in fact I decided it twice, that I would invest the time, energy, the soul-sapping, life-force sucking path of hcv resolution so that at a time in the future I would not have to. I do not dispute that entwining yourself around hcv resolution is a big investment. But really, your life does not stop on treatment, it goes on and you still have family, responsibilities, work and a life to live.  It's just isn't fun and sometimes a lot worse than not fun.  For me, it was pay up now or pay up later and I knew that more time, more damage, more years would make hcv reslotuion even more difficult.  Thus, a major part of my risk/reward equation.  But I had benefits that not all have that put me over the edge to headlong committment - cirrhosis and two kids who I discuss homework with every night and tell stories to some evenings.  Motivations and needs are different , we each need to find the main drivers of decion making.  But there must be a committment somewhere.  My two cents, but my two cents might not buy your cup of tea.

[tulips27]

i know .....thats a given. I agree. If god forbid they had cancer they would go for kemo right? I would 100% stand behind them. So I have Hep C and need tx..they dont want be to be a guinea pig.

I guess I just have to do what is right for me and thats it. Just very sad.

THANKS MUCH FOR LISTENING

[debnevada]

I would have to say, Tulips....if they don't have it, ask them to put themselves in your shoes.  What would they do then?

[tulips27]

I know I have to ut myself first and I am. However going thru this alone without the understanding of the few people I do have in my life is a bummer. They think I will grow two heads and six eyes or something!!

I was just looking for support from people in my life since its going to be a long haul...and I guess Im not going to have it from them.

You guys are my support.

[Jakied]

If treating is right for you at this time in your life, then go for it.  You must put yourself first in this case.  Your true friends will respect your decision.

[zazza]

I was worried about losing a year of my life to tx. What I have discovered is... you know what I am living my life during tx. Everything continues, my relationships continue, my children get older, life goes on.