treatment failed

[bambie181]

well I finished a whole horrible year of TX and to find out Im still at 100000000000 viral load. Yes it sucks considering Im only 29 yrs old. I found out when I was 19 and ignored it, stupid me for getting that stupid tatto in my friends basement! Now I have to live fear if Im going to get Liver cancer or die of complications way before I even have time to see my daughter grow up. Im really scared Im going to give it to my boyfriend, it really effects our sex life Any sugestions?

[redrodeo]

    I can't tell how sorry I feel for you. 48 wks and relapse. When was the last test before ending tx? Where you neg then. I would go have a repeat test they are wrong sometimes. It happened to me 1 wk before I was to stop. It came back I was positive w/ vl 18mil. Of couse I freaked out. A couple of days later we did a retest and the results were undetectable. So it does happen.
     Red

[nygirl7]

your viral load is like a hundred trillion million billion?!  No wonder treatment didn't work!  ;)

You aren't going to "give" it to your boyfriend. That is irrational paranoia and you have to make him understand that most of us who have had it for 30 years or so have been married, given birth to children and never given it to anyone.

You are too young to have to live with that guilt...please...don't take that upon yourself.

[Tallahassee]

So very-very sorry...

But... don't give up!

Explore your options and continue to fight!!

All the best!

[Andiamo1]

You guys are too funny!

[eureka254]

LOL you two.

All this time we were thinking Eric was on the water... when he was really on the waterbed!

Thanks for the smiles.

[HectorSF]

...I thought the Viagra ad warned "if you should have an erection for 4 hours or more please seek medical attention". Sounds like Eric has had one for 40+ years!
No wonder he can handle being treated 8X!!! Sounds like Superman to me!

More power to ya Eric!
Hector

[meki]

"I had unprotected sex with my wife since 1965..."

Dang Eric... Isn't it time to come out of the bedroom yet?

ROFLMAO!

That's freaking awesome...

Meki

[HectorSF]

Thanks for your feedback. I can't even imagine what you both have gone through. I am so glad you both keep fighting on and taking care of one another other despite the challenges.

Thank you for sharing your experiences. I hope many people will read your postings and learn more about the experience of living with advanced liver disease so they will not wait too long before being treated for HCV.

I find these forums help us all to feel less isolated. Many of us are at different parts of the journey. Some of us have cleared the virus. Some are trying to clear the virus and some of us are looking at a transplant as our only option to continue living. Hopefully we can stop and lend a helping hand to each other as we make our way through this thing called "life". Your experiences make me realize how lucky I am to be relatively healthy despite my compensated cirrhosis and how fortunate I am to live in a part of the country were I have never felt any judgment due to the illness I have. Just dealing with the mental and physical aspects of this disease is enough for any one person to bare.

Keep fighting the good fight!
Stay strong!
Cheers!
Hector

[Magnum]

Are you sure the levels are 100 billion? I've never heard of anything like that...

Magnum

[daniel2u]

I understand how you feel.  I just started my second time around.  I have blood work on Tues and follow  up the next Tues.  I was undetectable for a short time now I guess it is five times what it was before the first time I started the treatment.  I have to say that I am scared too.  I actually started walking around my house looking at old pictures and flash back of my life.  I don't know if I am being over dramatic or if this feeling of doom and gloom are related to side effects such as depression.  For me prayer is an important part of my treatment.  I have not heard  much mention of prayer in the forum but it is a therapy that is available to everyone.  Are you intending on starting treatment again.  I am beginning to pray the rosary everyday starting this week.  I will remember you in my rosary.
Pax
Daniel

[fswife]

my husband is stage 4 compensated and just failed tx. the doctors tell him unless if tx does  work on next try he has about 3 years, but your wife is still here after 11 years. do they just guess on this..or do most people live much longer than expected

thanks for your feedback, fswife

[fswife]

what do you mean that her body made its own stint.

fswife

[XO2]

Thanks Hector
My partner used to go to these forums and chats all the time that is how she met one of her very best friends who died of Liver disease several years ago. I do understand about the encephalopathy. We as I mentioned have been dealing with this for over 10 years almost 11 now. Most of her friends who used to chat with her have died now and I think that has much to do with why she does not join in. I thought maybe if I got the ball rolling it might help her to join in. I am 56 and she is 52. She has been on disability for the last 6 years. It was very hard to get her to do this (disability) because she is such a fighter but she is starting to get tired of being sick all the time. We went to dinner at a friends house last night and had to leave after 2 hours because she started getting to sick. The heat really makes things worse for her it is already 95 during the day here now. We are very glad to have met two friends who recently moved back to Mississippi from California because we can sometimes feel very isolated by the illness. Not only the Hep C and cirrhosis but also the way that people think. We lived in Memphis for 20 years before moving to Laurel MS.

Sorry for rattling on
I guess you can see I am tired of not having people here who understand the disease. We went to Oschner Hospital's transplant center for the first 5 years we lived in Southern MS but recently returned to the Memphis Transplant Center because Oschner has changed so since Katrina. We love New Orleans but it is to big a risk to have her not get the care she needs because of a Hurricane. We also still have so many friends in Memphis who help with support. She is not listed at this time because after her body made its own stint, amazing, her MELD score went back down.

Thanks again
OX2

[Andiamo1]

I have HCV since 1961!  I had unprotected sex with my wife since 1965 and she has not contracted it.  I treated 8 times so far - the last time with Telaprevir, a state of the art protease inhibitor.  

The virus was undetectable at week 2 and remained undetectable at my last test that was 4 weeks post treatment.

So remain optimistic.  There are many new treatments that will improve your odds of beating the virus and the fact you are young works in your favor.  I had the disease for 47 years and I still can out sail and out run plenty of people half my age.

Keep the faith!

Eric

[HectorSF]

Welcome! I am so glad that I may be of help to the both of you. I admire your courage and your "can do" attitude!

I would suggest you both sign up at the forum below. Many persons with advanced liver disease exchange support and information there and they have an excellent moderator IMKINDY who is both a kind and wonderful person as well as extremely knowledgeable. I think you will fine what you've been looking for there.
The site is mostly for persons with Stage 4, cirrhosis (compensated and decompensated). Many who are waiting for liver transplants or have been transplanted.

http://forums.delphiforums.com/liverfailure

It appears your partner is suffering with encephalopathy. (When the liver has been damaged by cirrhosis, it may not be able to filter poisons from the bloodstream, especially substances in the blood produced by bacteria in the large intestine. As a result, these substances (which include ammonia) may build up in the bloodstream and cause problems in your brain called encephalopathy. High ammonia levels are a sign of encephalopathy.)
Is your partner currently waiting for a transplant?

Thank you for sharing your question with us. I am very sorry to hear about you partner's condition and I wish you both all the best!!!
Let us know if we can be of further assistance.
Hector

[XO2]

Hi
I just joined the med Help group this morning. My partner has had end stage cirrhosis for 10 years. She is not able to get on the internet much any more due to her declining health. She has done the TX and was a non-responder it is not suggested at this time that she do this again due to several complicating factors. I was wondering if there might be a sight where she could go to get support that is for people who are not able to take TX. Most places I have gone on the internet tend to promote TX which is fine for people who are able to take it but since about 40% do not respond and many people like my partner are left isolated by the disease I am searching for something that might support her needs and mine as well (as her caregiver). She has bad bouts of confusion now so I am trying to look for her so that when she is in a good place she can join. I would even be willing to start my own Blog site if there is interest out there.
Thanks for listening                                                                                       XO2

[meki]

Bambi - listen to those folks up there... they're awesome!!!

Also - let me tell you something.

I have had HCV (now SVR --- technically "cured") --- but before TX, I had been in a major car wreck --- had a child --- Had FANTASTIC wild monkey sex with the hubby during every phase of the moon --- normal household living --- normal cuts scrapes and bruises --- and NO ONE in the house caught HCV from me.

I don't think sex is a transmission route - UNLESS you get both partners bleeding.

HCV is a bloodborne pathogen - which means the virus must be inserted into the bloodstream.

So - go have your wild sex --- just be more careful about certain things (like rough sex - use protection, etc.) and while I did have sex during menstruation - it's probably not a good idea.

If either one of you has sores or open wounds --- probably a good idea to abstain during that time without protection.

Bandage your wounds - take care of yourself - don't share toothbrushes, razors or nail files... clippers, etc...

Clean up your blood... You know -- take UNIVERSAL precautions.. and you probably won't infect anyone... so stop panicking.

Make sure your spouse, significant other gets checked periodically to alleviate any worries.

Also - you CAN re-treat.

You can wait for the trial.

Your viral load really is only a measuring device ---- and is usually not indicative of how much damage you have done.

There are a ton of folks who have low viral loads and lots of damage --- and some who have high loads and no damage.

So it's only an indicator of how much virus you have in your bloodstream.

And 100,000,000,000 is extremely high.  I don't think that's accurate... LOL!

But who knows - I really don't.

Chill - read the forum - get to know some folks here --- and learn about this disease - your options and take some time to learn about the cures, the trials and other opportunities coming up for your disease.

Much luck to ya!

Meki

[allanh]

Some people have to take TX two or three times. I've just started Week 48, and while my viral load is currently zero, there's no telling for sure what's going to happen in 3 or 6 months.

I'm surprised that your viral load is so high if you just finished TX. What were your viral load readings during TX?  Labwork taken between weeks 10 and 12 can often be used as a general possible indication of success probability.

Finally ... (1) Talk with your doctor more, (2) if your doctor isn't helpful, seek out a different doctor, and make sure it's a hepatologist, (3) look into participating in a clinical study, many of which recruit patients who have failed conventional TX.

Good luck!

-- Allan (week 48 or 48)

http://hepatitis-c-log.livejournal.com/

[HectorSF]

Welcome! Thanks for joining. I hope you find the support here helpful and you learn to manage your illness. There are many helpful people here who have gone through similar experiences and are happy to share their experiences with you.

In order to be able to provide feedback it would be helpful to know more about your experience during treatment and how you responded to treatment.

I am assuming you are genotype 1?

What was your viral load before treatment?
At week 4.
At week 12.
At week 24.
When you completed treatment.

Did you have a biopsy done?
What was the results of the biopsy?
Stage? Grade?

You say that you have had HCV for 10 years. If that is the case you could have another 10 - 20 years with no treatment before you develop stage 4, cirrhosis. Only at that point would you need to be concerned about developing liver cancer (HCC) or die from complications of decompensated cirrhosis.

In the next 10-20 years chances are good that with new treatments the cure rates will increase dramatically and the duration of treatment will decrease. So please try not to overreact to your current failure to clear the virus. Many people here have gotten retreated and successfully cleared the virus.

As far as spreading HCV via sexual relations. The chances are very small. Many couples have had sexual relations for many decades without spreading the virus to their partner. The virus is spread by blood-to-blood exchange. So as a preventative measure don't share razors, toothbrushes, etc. anything that has your blood on it with your partner. Common sense and safe sex practices also avoid spreading other diseases as well.

I would suggest learning more about this illness. Talk to your doctor about why you may have failed treatment this time. Ask his advice about waiting for new treatment options that may help you clear the virus. Also learn more about how the virus is spread. By educating yourself you may see that some of your fears may be out of proportion to the real risks of HCV.

I wish you all the best. Thanks for sharing.
Hector.

[eureka254]

So very sorry to hear that your treatment was unsuccessful.  Keep in mind, though, liver cancer affects a minority of hep c patients (less than 10%), and most hep C patients die "with the disease", not "from the disease."  Many people (including my husband) live decades without complications  -- for many, the progression of the disease is relatively slow.  (A liver biopsy can give you information about the health of your liver and let you know where you stand -- it might help to alleviate your worries.)

Many people who are unsuccessful at first treatment clear on a second, third... or for some, even an eighth or more try.  There are many promising, better treatments on the horizon and possibly to be approved in years to come that may greatly improve your chances at cure.  In the meantime, eat/drink a liver-healthy diet.

As far as sexual transmission of hep C, it's rare -- less than 5% -- as it's a blood-borne virus.  Both partners would have to have open wounds/blood contact to transmit HCV.  My husband and I have had unprotected sex for over 20 years and I don't have Hep C.

Hope that helps.