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.
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...
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
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
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.
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