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Avatar universal

The dragon is BACK...no words

I'm sad to say we got our results back from our 4 week checkup after EOT..its back so another relapse. My heart is literally broken and I feel hopeless. There are no other treatment options for geno 2 so what do we do now?
31 Responses
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317787 tn?1473358451
Just saw this, love it!

We Are Family

That is so true, it brought tears to my eyes to read it, thank you, Dee
Helpful - 0
Avatar universal
'keep in mind I am very pessimistic by nature'    Me, too!!     Was sort of that way before all this year after year of HEP C  -  BS.  However, I confess, it could also be depression.  I tried AD's and never could tolerate the side effects. Now, just try and exercise for my AD's and if it gets too bad, will periodically see a counselor for 'talk' therapy.   Susan400
Helpful - 0
10175413 tn?1427170251

Really very sorry to hear your news. Don't give up, there is always hope and new meds on the horizon!
Wishing you both the best and will be in my prayers
Peace
Deb
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Avatar universal
Thank you for your kind words, I really wouldn't know what to do if I didn't have this online group to not only help educate me on things about this virus but also to be able to talk to people who know exactly how I feel. We're not giving up I believe he will be cured.
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4896357 tn?1360670904
No edit function. Your husband I mean in previous post. You hang in there too. We love you. We are family.
Helpful - 0
4896357 tn?1360670904
I feel bad for you, especially with so many people seeing success. Don't give up hope. Take a break, live healthy and decide your next step. We are all here for you. :,(
Helpful - 0
Avatar universal
Thank you everyone!  We see the dr again in April but we are going to push for 24 weeks of Sovaldi/RIBA I feel they didn't have him on it long enough
Helpful - 0
1961140 tn?1450738712
Hey, I did not mean to sound glib in my response. I have no idea what your financial burden has been during this process. When you find a new tx that will work on your loved one's GT, please contact and utilize the experience of all of the good hearted folks here who have been through the financial ropes, and know all the tricks. I was extremely fortunate in finding that clinical trial, I realize many are not as lucky. It is my heartfelt wish this disease is not simultaneously draining you spiritually as well as financially. Please feel free to contact me directly if you have any questions regarding those Merck meds I used. Best Of Luck, mac790
Helpful - 0
1846163 tn?1331048748
So sorry to hear.  There WILL be a tx soon which WILL work.  Hugs to you both.
Helpful - 0
Avatar universal
Sorry to hear that. Have you asked about retreatment for 24 weeks if insurance won't approve, maybe doctor and you could ask Gilead.

If this phase 3 trial is successful, maybe it will be available next year.

https://clinicaltrials.gov/ct2/show/NCT02220998

Comparison of Sofosbuvir/GS-5816 Fixed Dose Combination for 12 Weeks With Sofosbuvir and Ribavirin for 12 Weeks in Adults With Chronic Genotype 2 HCV Infection (ASTRAL-2)

Anyone, GT2 with cirrhosis, who is offered SOV/RBV 12 week,  should push hard for 16 weeks.
Helpful - 0
317787 tn?1473358451
Promise I am so very very sorry to hear.  I know the feeling.  I relapsed back in 2009, I was devastated.  I had to wait two years for Incivek to be approved.  That was a nightmare of a tx.
I was told my a Dr Dietrich on here to rest, heal body, mind and soul and try again in a year.
Others on here told me to get my ducks in row, drink lots of water to help the liver, eat very healthy for the liver and try again.  I was told to stay away from fried foods, red meat, fatty foods, fast foods.  Try to eat whole foods. Drink water. Everything you eat drink, put on your body in your eyes has to be processed by the liver.
I also was dx with cirrhosis in 2008.  Of course there are different levels orf cirrhosis so everyone is different in the length of time we have to tx again.  I am praying for you and hubby.
Please also take care of yourself.  This virus is so f____g hard, too hard.
My best to you!

Censoring ourselves, that is funny!
Helpful - 0
Avatar universal
It's my understanding from a while back that S/O with Riba for 24 weeks is best for GT2's. It's a triple combo a friend cleared on and is cured from. But their level of cirrhosis wasn't as bad so they could take that combo.
Did he take Olysio? So sorry he is running out of time. I hope you find a cure soon. When I was that sick I slept on an "Earthing mat" next to my liver and it helped buy me some time. It's a grounding product. Earthing *******. It's effects were subtle but profound.
Hang in there. Never give up. A sudden miracle might happen where they come out with a one-time shot that stops the replication for all GT's. They are working on it.
Helpful - 0
683231 tn?1467323017
Ouch :-(

So very sorry to hear this just to share I was diagnosed with cirrhosis in Jan 2008 and still hanging in there he still has time there are other options and newer hops on the horizon

Hugs to you both
Lynn
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Avatar universal
I'm so very sorry Promise and understand how devastated you both must feel.   Please don't despair as your husband will succeed the next time.

Know there are no words to make you both feel better.  Please know tho that a few years ago we had no Tx.  Within the year a better protocol will be set in place.

I "Promise" you the next Tx will be the one.  Please know we will all be here for friendship, guidance, and support.
...... Kim
Helpful - 0
Avatar universal
Oh, it's a terrible feeling to learn treatment failed us.  Allow yourself time to grieve, get your bearings and recover.  Remember to breathe.

In 2012,Victrelis, Ribaviin and interferon failed me at 24 weeks.  There was nothing set for immediate release by FDA.  Since then, I completed (and relapsed) Sovaldi, Ribavirin and Interferon and am now on 24 weeks of Harvoni and Ribavirin.  New treatments will be coming your way too.

Your husband is so fortunate to have you right there fighting with him.  My husband has been a rock through my diagnosis, treatments, tests. God bless you, my husband and everyone else who stands by us during it all!  Stay strong and keep the faith.  We are here for you!
Helpful - 0
6708370 tn?1471490210
Good point Pat!

Yes, a  vacation for your liver from the virus is a very good thing
Helpful - 0
Avatar universal
P:  Don't give up hope!  I treated with Sol/Riba also.  MyGt3 is the hardest to treat and that combo was the best available at the time (at this time, too).  

Since I was F3, one step up from cirrhosis, my Dr strongly recommended doing it anyway as Dac wasn't (and still isn't) available except for trials.

This is the important part:  The reason he gave for so strongly recommending it, is that while on the S/R, and reaching UND our livers are getting a rest from the virus, a chance to NOT get worse.

So please, both of you, don't dispair!  A three month rest for the liver is excellent.  With that, and as OH said, a good diet, moderate exercise, and keeping hydrated, it can make it a difference in helping Hubby be able to do well enough to wait for the better tx. -- or be strong enough to go through the same tx for 24 weeks, if need be.

Hang in there, both of you, one step at a time.  

Blessings!

Pat

P.S. Please keep us informed and try hard to stand upbeat!  It truly helps!
Helpful - 0
2059648 tn?1439766665
I read 16 weeks also.

http://www.lifebeyondhepatitisc.com/medical-information/length-of-treatment/
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6708370 tn?1471490210
Oh no!

I am so sorry to hear this. I am one of the been there, done that, and yes, it ***** (I've taken to censoring myself to save MH some time)

Deep breaths. Then back to the drawing board. I know that is so hard to even think about that right now but what others have said is true. Newer and better regimens are just down the road and Riba will be go the way of Interferon. The SVR rates will continue to climb and it will be just one pill a day and nearly everyone will achieve SVR

I just started the same treatment today - Sovaldi/Riba for 12 weeks and I am cirrhotic . I hope it's not one of those After the fact things where they say:

Yeah, we should have treated longer

That happened to a few of us on S/O who likely would have been cured if our treatment had been extended to 24 weeks.

Sending good thoughts your way.

Hang in there!
Helpful - 0
Avatar universal
Thank you everyone for the words of wisdom and the information shared. He had a blood transfusion in 1986 which is before they started screening for hep c so the dr is sure he's had it ever since then in order for his liver to be as bad as it is at such a young age. I haven't read about the Merik treatment but it sounds promising. I've read online where it says Sovaldi should be taken 16 weeks if the patient is cirrhotic, we were only on it for 12 weeks.
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Avatar universal
I was cirrhotic as well. I was diagnosed in 1991 with cirrhosis and failed all the treatments I tried. I didn't clear until 2012  with Viekira Pak.  I am still here alive and kicking. Your hubby will likely be just fine until the newer meds are available.
Helpful - 0
Avatar universal
Sorry guys. I am scared too death until I get to week 24. I got another month to go. Keep your heads up. New stuff coming out every month. SVR a is in your future. Just keep plugging along.
Helpful - 0
163305 tn?1333668571
What to do after relapsing, is eat a good diet, exercise and enjoy life while keeping your eyes open to newer means of treatment coming down the line.

Good luck.
OH
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1815939 tn?1377991799
I am very sorry that your husband relapsed. I know it is very devastating for both of you. I am hoping that his doctor will have some ideas about treating him so that he can attain SVR.

Thinking of you and wishing you the best.
Helpful - 0
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