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Avatar universal

failed four treatments

I have known for 20 years that i have hepc,I now have fibrosis 6 have done four treatments including teleprevir.
I just wish I'd waited until solvadi and ledispavir. Hey ho. I'd have always wondered what if. My friend found out 6 months ago had 2 months of the treatment and is cured.
I'm getting worried now as I have 2 children who depend on me and am alone,but there's always a transplant and a glut of new drugs coming so theres hope. Would like to get cured but I've learn;t to live with it. If anyone has any questions or advice I'd love to hear from you. V.fed up with it all now,but I'm alive and thats what counts.
Best wishes to you all.
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Avatar universal
I'm glad you have a safe and secure place for you and your kids!  I hope it helps reduce your stress level!  

We must keep striving for SVR!  We are worth it and our families are worth it!  

I hope you found a great bike for your son!  :)
Helpful - 0
Avatar universal
T:  I wasn't ignoring your info - just resting and Doing a little research.  Everything I read said Stage 6 was cirrhosis probable or definite.

My test was the METAVIR, which rates fibrosis as
F1--F4 and necroinflammatory activity levels within that as grade A0--A3. My rating is is F3 grade A0 - A1.

I haven't found a good comparison chart for METAVIR vs ISHAK, looks like that would be a 4 or 5, but I'm just guessing here.  

My point is that you are probably within the range that would benefit from treatment as your liver should still be able to regenerate itself.

Good luck and prayers that you go on treatment really soon.  Pat

OH:  what a powerful post and what good advise.  We can all benefit from that.  Thanks!  pat
Helpful - 0
Avatar universal
Hi I'm so sorry that you are having as tough a time as me.
I'm finally able to get benefits and have got a lovely housing association place so we now have some security.
Our time will come soon hopefully.
I too have chirrossis I've stopped going through the online stuff so much as the fact that there are so many men who find women who want to look after them but not viceversa.
Hope you have a lovely day,I'm off to buy my son a bike.
Helpful - 0
163305 tn?1333668571
My story is nothing compared to our good friend HectorSF who sounded like a goner for sure. He was number 3 on the transplant list when his liver cancer returned. Nevertheless, he persevered doing new innovative cancer treatment and finally getting his transplant.
Don't give up hope ! We are just two of the lucky ones who beat this nasty virus despite it almost killing us. We did it and so can you :)
Helpful - 0
Avatar universal
You are truly inspirational. Thanks so much you have given me hope.
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Avatar universal
Thanks OH.  It sounds like you are a real fighter!  You are an inspiration to me.  Hoping for the cure soon!!!!
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163305 tn?1333668571
Although I'm no expert I can tell you that basically there is compensated cirrhosis, where your liver compensates for the cirrhosis, and decompensated, which is further advanced and more severe!+~that is when you start having complications.

I wasn't diagnosed until I already had decompensated cirrhosis and ascites, fluid retention. Nevertheless, I was able to keep the ascites away for three years ( after a treatment of diuretics) by going on a strict very low sodium diet.
Also, when your liver is damaged, it's even more important to be careful about what you eat. Try to make it easier on the liver's function as a filter by eating as organic and as freshly prepared food as possible. Avoid excess iron and red meat but do keep up on protein with eggs, fish, chicken and tofu.Take a good iron free multivitamin.
Beets, artichokes, turmeric and coffee ( yes coffee !) are all good for our livers.

BTW: I did tx, failed, had a transplant, did treatment again and was successful. Now, I'm 5 years post transplant, hep C free and doing well.

You've got the right attitude.  You are alive and try to enjoy each day.
Good luck.
OH
Helpful - 0
Avatar universal
Hi I'm at fibrosis 6 on the ishak score,I stayed negative for the whole year of Teleprevir,peg.riba. then three months later I went viral!!!! again.
They are seeing me in two weeks and then I think they'll work out my next step.
Really tired and weak all the time,and a complete space cadet,It takes all my strength to keep cheerful and to be a mother to my two children,without any support. I applied for P.i.p and have been waiting for four months,so my children just suffer more and more.Does anyone know how the progression of chirrosis is measured?
Thankyou for your replies greatly appreciated,have known about my 1a for 20 years may have had it all my life.
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Avatar universal
Hi there.  Well, you haven't cleared the virus in the past, but today is a brand new day.  Would not 2nd guess yourself for the past attempts, as while UND, even tho briefly it gave your liver a chance to recharge.  The time has come for us all, and soon you will be free.  Think it would be a good idea to get yourself emotionally and physically ready for again undertaking the newest meds.  Have been treated with the best team of doctors in regards to Hep C, and they are in awe of how amazing the new drugs are.  The truth is, you will be cured of this virus.  Be well, and soon you will have a much deserved bright future.        ..Ki,
Helpful - 0
Avatar universal
any worse!  So I fight.... For myself, my family and my friends.  This virus may inhabit my body, but I've decided it can't own me.  

I am here to listen and given whatever support I can.  

Take care,
Susan

Ps- you will see I often have two posts!  I seem to hit enter to quick!  I blame it on my treatment brain!  :)
Helpful - 0
Avatar universal
Welcome to the forum.  I'm a recent joiner of this forum.

I read your post and it sounded so familiar to me.    I understand your feelings.  I treated in 98 3x/week Interferon and Ribavirin (when the Ribavirin we the "new" stuff.  I didn't clear.  I had two friends that found about their Hep C in the early 2000's, partially due to their increased awareness of the virus thanks to my advocacy.  They both cleared.  In 2012 I did the Victrelis combo and had to stop at 24 of 48 weeks due to failure to reach UD.  I was devastated.  Another friend, with encouragement from me and his wife, did the Victrelis and cleared.   Of course, I was and am so very happy for my friends!  However, it does tend to get you down when everyone around you is having success and your not.  :-/

I am now on week 6 of 12 with the Sovaldi/RIBA/interferon.  I had a VL at 4 weeks, no results yet.  I am hopeful to clear, but am focusing on the fact that I am at least helping my liver.  I have early cirrhosis and don't want it to get
Helpful - 0
Avatar universal
Welcome to the forum.

I know you feel that those prior treatments "failed" but I believe that nothing is wasted and though you were not cured, those treatments helped to limit the damage.  Hopefully you will get on the sovaldi/ledipasvir combo pill in the fall and you will finally be cured.  From what I read that combo pill had 90+ cure rates in the trials for all genotypes (including cirrhotics).

So hang in there. Hopefully SVR is not that far off.

Best wishes,

Nan
Helpful - 0
Avatar universal
Hi, and welcome to the Forum.  You sound kind of down but looking for the positive.  Well, I hope the Forum will be one.  You have found a place where we are all there somewhere on the continuum.  In order to give you useful advise we need to know:

1. What Genotype you have.
2. What staged is your fibrosis?
3. Are you in treatment now, and if so, what?
4.  Any other history - were all of you treatments null (failed to cure)?

Hang in there!  Amazing things are going on these days.
Helpful - 0
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