Bad new, need help

[walk]

My dear husband was on treatment for praticly a year and we just receive the result. The treatment did'nt work. They don't want to see him before next year and did not give us his viral load. My husband is completly devastated since under medication he was very much in pain and about to kill himself. He is genotype 2b the hardess one to fight. His liver has a mild inflamation (inflammation) and he his stage 0. Now he want to know how long he can live with it since he is young (31) and younter can developed It faster. We don't know how and when he contracted it. Never had blood transfusion, never took drug, no percing ect..... well you see the picture a total surprise. He is scared that he will not be there anymore in 10-30 years. He is sad with the idea of living me and the kids grow old by herself. Thank you Carmen

[walk]

What do you think of a drink at chrismast and very special occasion?

[GrandOak]

Carmen,

While Geno 1's are harder to treat, a 1A is harder than a 1B, so there's still a little bit of better news there (unless you're like nygirl who does everyting in a big way and had to get both 1A and 1B ;-P )

As nygirl has pointed out, a stage 0 is quite good in that it means no damage has been done to his liver and he has time to wiegh his options.  Also as she has pointed out, there are some very promising meds in final trials right now which should be hitting the market in 3-5 years.

I've also know people who have lived with the disease 10-20 years with the same Geno and stage as your husband as they wait for better treatment options to become available.  The key is to know what signs of progression to watch for and have regular tests, including biopsies to closely monitor his situation. So while things may be looking bleek at the moment, they aren't quite as bad as you may think.

[painterlady13]

Personally I think I would stay away from drinking alcohol since he still has not cleared the virus.  when others are having champaign he can have martinellis spatrkling cider, or non alcoholic egg nog at chriostmas when others might have brandy or rum in thiers.  Most drinks and be made virgin and still be just as good and much better for the HCV patient.  But this is just my opinion.  Alcohol here is very contriversal but usually only after the virus has been cleared most here do believe that before it has been cleared "NONE at all" is best.  I stopped drinking a year before I found out I had HCV as my Girlfriend is an alcoholic and I was trying to be supportive when she quit. Now in retrospect I am glad I did, healthwise. I don't miss it and still get to have my strawberry daqueri's, Just no rum in them they are still just as tasty.

[sunspot]

I have remembered you and wondered many times how you were doing. I am so sorry to hear the news of your husband.
I recall that you are in Canada. Will your husband be able to try another treatment program?

[rochammer]

walk

I am a 56 yr old male geno 2 stage 3 probably have had hep c for 35 years Just completed round 2 of treatment

Your husband is stage 0 which is great news he has time to wait for better meds. Your husband sounds like a great man. He is worried about his family more than himself
As long as he keeps a good diet and stays away from alcohol he will be healthy for a very long time even with out treatment. Geno 2 have the best odds for treatment not the lowest but not as great as some doc’s like to think. Right now you are just in shock just like my wife was when I relapsed just give it some time to sink in. Things are not as bad as they seem right now.

My best to both of your

Rock

[aiuta]

Dear Carmen,

I am so sorry for the recent news that your husband and you got.  I can't imagine going through this difficult tx for so long and then learning you relapsed.  It must be excrutiating to hear.  The good news is that being a relapser does not mean the treatment DID NOT WORK. The fact that your husband treated for a year implies that he must have experienced SOME drop in Viral Load, or else they would have taken him off after 3 or 6 months, since the sides can be so strong and the dr's have determined the pain not worth the gain with log drop in VL during tx.

The liver is one of the only organ's in the body that is capable of regenerating itself; that means that during the tx, your husband's liver was getting better.  The fact that he was a RELAPSER is a much better sign than that he was a NON-RESPONDER (no VL drop).  It means, the meds DID work in his body, but that for whatever reason (perhaps length of tx or something else) it wasn't enough THIS TIME.  As others have responded to your posting, there are NEW meds in clinical trial right now showing very promising results.  Yes, the genotype your husband has IS the hardest to eradicate but it is also the SLOWEST to progress.  This recent news is NOT all bad.  According to a top CA Hep Dr, it's actually very GOOD news; it means the body DID at least respond.  

I recently went to hear Rolf Benirschke, a professional football player who contracted Hep C through a series of multiple blood transfusions, speak.  He treated for Hep C THREE TIMES and on the THIRD time beat it.  His is a very inspiring story that might be able to help you and your husband (I would imagine you can google his name and find something related to his Hep C).  I am SO sorry about this news and about your husband's feelings as a result of it.  All totally understanding under the circumstances. I just hope that you and your husband will not give up the faith and hope.  Thanks for your post.  I hope you continue to share with us if you need to.  I send you my heartfelt sympathy.  All my best, Aiuta

[painterlady13]

I'm sorry your husband's treatment didn't work.  But 1's are the hardest to treat not 2's so for him that is good.  there are a couple newer drugs coming out on the market in the next year so maybe that is why the doc wants to wait.  One is a newer type of riba that you won't get the anemia with.  Can't remember the name but I;m sure someone else will come on today and tell you it.  Also Hep C is a VERY slow moving disease and many here are still at the stage 0 or 1 who have had this for 30 years.... With what you said about his stage he could even wait a few years for one of the drugs that is in trials that will only be a few weeks TX instead of months or a year.  Good luck to him and give him a hug and let him know he will probably be around to see his grandchildren grow up as long as he takes care of himself.

[NYgirl]

As a stage 0 he has PLENTY of time to wait for this next generation of drugs and try them at that time IF he even needs to do that.

Considering he is a zero...I'm not sure why he was pushed to do treatment with the hard way he went through it anywayy - he could live a full healthy productive life and never have any problems because of it!  More than likely something completely unrelated will be the cause of death and not his liver!

It is horrible when people do not get the cure.  They have always said that genotype 2s are "lucky" because it's "easier" to beat it than genotype 1 but...I don't find that 2s have ANY GREAT SUCCESS RATE AT ALL.  If he is a "2" I am not sure why they had him treat for a year because the standard protocol is only 24 weeks.

If you have these facts right - it sounds like you really need to see another doctor.  But as hard as it is listen - with stage zero there ISNT AN URGENT RUSH right now.

Give him time to recover physically and mentally and then IF you decide you want to...talk to a specialist.  Something in this isn't making any sense as 2s treat for 24 weeks and 1s (which ARE the hardest supposedly) treat for almost a year.

Either way - he's GOT TIME.

Good luck. I'm so sorry.

[NYgirl]

PS Carmen there are LOTS Of people who have no idea where they got this virus.  Don't worry about it.

I am pretty sure your husband will be around for at least 30 years to see his grandchildren and it won't be his liver that causes him not to.

Try to relax. He's going to be OK.

[walk]

Thank you painterladay. We think he might have contracted it 28 years ago when ..... something happen. But we can't be sure. Yes I love him to death and will tell him what you said. Thank you

[walk]

Sorry I made a mistake he is genotype 1b. But thank you for everything. I really hope they find a better cure with time for all of us.

[GrandmaA]

The better treatments are in clinical trials right now and some of the best will be available in 3 years. He has time as long as he takes good care of his liver and doesn't drink any alcohol.

[motheroffour]

I just skimmed the above posts but I would add (or agree if someone else said it), tell your husband to not drink any alcohol or just very, very little. My husband we figured had Hep C for aittle over 25 years and we discovered last year that his liver is early Stage 4 when he liver enzymes went wacky during a routine physical.  He was not an alcoholic but we did have wine with meals many nights and drank socially most weekends.  Acohol is fuel to Hep's fire.  We all here believe that something good will be around the corner for non-responders and if he is liver friendly with his lifestyle that is the best thing to do while he waits.

[bobbyullc]

I WOULD GIVE ANYTHING,ANYTHING TO BE IN HIS SHOES. WHY HE EVEN CHOSE TO TX AT STAGE O TO ME IS A MYSTERY??? THE TX AT THAT STAGE IS WORSE THAN THE CURE. I AM STAGE 3 AFTER 37 YEARS AND MOSTLY FROM DRUG AND ALCOHOL ABUSE. I GOT IT ABOUT 25 YO. HE COULD GO 20 TO 40 YEARS AND NEVER EVEN FEEL ANY EFFECTS FROM IT. NEW TX IS ONLY 2 - 5 YEARS AWAY AND MUCH MUCH EASIER.
GENO 2 IS REALLY BETTER THAN MY GENO 1 TO TREAT (I THINK). RELAX AND ENJOY LIFE UNTIL NEW TX COMES ALONG. DO NOT BE SO MELODRAMATIC. HE HAS EVERY CHANCE IN THE WORLD. SMILE!!
BOBBY

[cuteus]

a drink on rare occassions should make no difference at stage 0, I would not worry about it.  I am stage one and having my beer when I want to.  

on another note
I am not sure where the belief that 1a is harder to tx than 1b comes from, since this has not been studied much, and the only thing I ever found was a study that placed 1b at a harder to treat status, based on subjects having more damage than the 1a, and longer time needed to clear the hcv early on tx, but that was an old study and not repeated as far as I know.  Anyone with a link to articles stating if 1a or 1b is harder to treat, please post.

[bobbyullc]

bottoms up!

[shawn_hsp]

Though I dont have hep C, but I do have hep B. I'd say your husband is lucky into his 30s with stage 0, I'm just into my 20s and I'm already on stage 2, I believe I got it due to smoking, drinking since 10 years ago. I also didn't sleep a lot everyday for the last couple of years, which I think also contributed to my stage 2 fibrosis.

[phantom66]

Hi Walk,
I'm with you and your husband. I cried in my doc's office when I heard the bad word RELAPSE. My first diagnose was genotye 7c. Based on that info, my doc put me on tx for 6 months, as recommended by others in the nation at the time. My VL was < 50/ml (undetectable) after 5 weeks. It was great news to me and my family. But in my 4th month, I wanted to give up but my family and my doc encouraged me to stay on the tx. I completed the tx and it was still undetectable. However, four months after the tx the stupid virus came back at 3 million copies/ml.  My wife was shocked. I was davestated and cried in my doc's office. I suspected that something was wrong. I asked my sister-in-law, who is a family doc, to order another test for genotype. The second time, it showed I have 1b. You see, even modern technology makes mistake. My wife and I talked to my GI and he suggested I should got back on tx for one whole year. I said "No way, you guys! Six months was bad enough, how can I go thru for one year?" Guess what? I agreed to it and did it. This time I decided to take a whole year off from work. It helped me quite a bit with my tx because I didn't have to face stress and pressure from the office. I've been free and clear, knock on wood, for 8 months now. I still go in for blood test every 3 months, then every 6 months, etc.

The key to this is REGULAR CHECKUP, eat well and healthy, stay away from fatty food, exercise 3-4 times a week, consume no alcohol (I now drink O'Douls and equivavents), manage your stress level, etc. You know what I mean. Tell other docs, if you need medications for something else, that you have HCV so they would be careful of what they give you.

New drugs for HEP C are on the way. There's hope for everyone. Good luck to you all.

[FlGuy]

Unless he has been treated for the hep-c he probably still has it.  And if he is a drinker, that a double assault on his liver and that's not good at all.  Since hep-c is transmitted blood to blood the children are proabably safe unless there is a tranfer of blood in some way.  You probably know it, but the guy needs to do something.

[phantom66]

Hi KaraS,

There are many websites for you to learn more about Hep C. You can go to the one below for more info. Good luck.

http://hcvadvocate.org/hepatitis/hepatitis_C.asp

[KaraS]

Oddball question ... after living with my ex-partner for years (two kids) ... I still don't know enough about HepC, which he had/has.

I don't have it, and my children don't ... would that mean that my ex-partner is no longer contagious, and I can stop worrying for my children?

(Sorry to bug you ... I know how horrible it can be - his liver used to bulge out his side, and it caused him a lot of pain - he is a heavy drinker, so that wouldn't have helped).

[KaraS]

Thank you.