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Posted 11/5/2013 5:22 AM (GMT 0)
[img]/community/emoticons/confused.gif[/img] I have been on a trial that was sponsored by Gilead back in Dec 2012.It lasted 12 weeks. The combo I was on was Sofosbuvir/ledipasvir, please excuse spelling. I was on three prior treatments that almost killed me. I was geno 1a with stage 3 liver damage and grade 3 fibrosis. I was undetectable by week 1 and have remained that way 8 months post treatment. All my doctors say I am cured. I have had a new biopsy, ultrasound and they are both normal ,not showing any damage at all. my ast and alt have been on the low side since I starts the trial. I guess what I'm saying hope is on the way with in the next year. They also are conducting a study with gs 5816 which is a pan geno ns5a nuke which is much like Ledipasvir but will work on all geno types. So keep the faith, this disease will soon become a thing of the past very shortly. The best part about this combo is that there is no need for ribavirin and not 1 side effect.

Best wishes, EzAl

Post Edited By Moderator (hep93) : 11/5/2013 10:39:34 AM (GMT-7)

Posted 11/5/2013 11:01 AM (GMT 0)
Let me be the first to congratulate you Al, way to go!

You are one of the lucky ones who got the trials early and had the expected success. I just wish they would FINALLY release the drugs before it's too late for the folks who need treatment so desperately.

Take good care of that liver now :)

All the best,
Posted 11/5/2013 5:43 PM (GMT 0)
Great news!! Can they use the word "cured" at this point?? or undetectable??

Sandia
Posted 11/5/2013 5:53 PM (GMT 0)
EzAl, welcome to the forum and congrats on the awesome news. This is the very treatment that my name has been submitted for, but due to other recent physical problems there may be a delay. However, by then it may be more widely available.

How long after completing treatment are you at now? How long have VL, etc., been nonexistent or in normal range?

Everything I've heard thus far about this treatment is positive. The newer one covering all genotypes is also great news.

One note: I would refrain from using the term "cured" at this point. Just being cautiously optimistic, since there are no long-term stats yet available.

Please keep us updated.

Hugs,
Connie
Posted 11/5/2013 6:14 PM (GMT 0)
EzAl, My partner is online for the same drug treatment trial...for post TP patients looking to determine the best combination of drugs for each genotype. We have heard yes, no, yes about his participation and hope every day for good news.

We are so encouraged about your experience.

Hoping for a continued clear labs!

Mama Lama
Posted 11/5/2013 6:18 PM (GMT 0)

FL and Sandia,

I have been virus free for 8 months now. The trial Dr, my liver Dr. and Gilead are calling this a cure.I was virus free after the first week of the trial.

Being SVR 24 post treatment is considered a cure. All my tests show normal, biopsy, ultrasound and blood work. My liver Dr. used the word "amazing"

Gilead wants to bring me to Foster City to meet the team that worked on my trial and for me to tell my story and to meet with senior management.

Lets not forget that I went through 3 horrendous treatments that almost killed me. I had given up any hope before Gilead came to my rescue.

There are wonderful drugs coming to market that will make this disease no worse having than the flu and Gilead has all of them.

My very best wishes to you all and great news will come for you as well.

Best Regards,

EzAL  

Posted 11/5/2013 6:26 PM (GMT 0)
BTW,I play golf twice a week and walk the course now when before I would ride. I feel like I have more energy now than I did when I was 30 years old.

Since this was a stage 3 trial they have plenty of data to call me cured. AST and ALT 21 & 22 since January 10,2013 again, Biopsy and ultrasound show no damage to my liver at all.

Wishing you all my best,

EzAl 

Posted 11/5/2013 6:31 PM (GMT 0)
Well, I think maybe I would call you "cured," too. smilewinkgrin Truly amazing. How exciting to be a part of history and to have the opportunity to tell your story to the professionals...show a human face to the numbers.

Hugs,
Connie
Posted 11/5/2013 6:41 PM (GMT 0)
Trust me,I will speak for all my brothers and sisters who suffer with this disease. This combo will be approved by the end of 2014.I hope to go in front of the FDA as well and show them the proof of what Gilead has done in this fight against this horrible disease.

Just hang in there, I believe in paying it forward, so what ever I can do I will.

Regards,

EzAl

Posted 11/5/2013 6:52 PM (GMT 0)
Such great news!!!! EzAl ... thanks for sharing and giving us hope.
Posted 11/5/2013 6:52 PM (GMT 0)
Such great news!!!! EzAl ... thanks for sharing and giving us hope.
Posted 11/5/2013 7:32 PM (GMT 0)
Good for you. I have now been undetectable for 23 months, but my docs would never use the term cured. I was undetectable in 2004-05 for 12 months, had a cerebral hemorrhage and my viral load shot through the roof. Then I went from stage 1 (high) to ESLD in a matter of months, and 4 years later had a transplant. Did the interferon/ribavirin again and as I said before have been undetectable for 23 months.
Posted 11/5/2013 7:40 PM (GMT 0)
I'm glad that it worked for you the second time as well. The old standard of TX was never a complete cure, just a remission. More than likely now you are cured. The newer treatments actually eradicate the virus from your body and that is why they use the word cure. The very best to you and your health.

Regards,

EzAl
Posted 11/5/2013 9:19 PM (GMT 0)
the newer drugs; PIs and nukes are all DAAs(direct acting antivirals). they stop the replication of hcv. if the virus cant multiply , it dies. your cured. i follow the trials, and one thing i keep reading is that svr will be 12 weeks with the nukes(nucleoside/nucleotide inhibitors). Telaprevir results to date show a 99.7% success rate at 12 weeks post tx. SOC, better known as interferon and ribavirin work differently. interferon stops the immune response in the liver, which stops inflammation (alt goes down). ribavirin which is also a analog nucleoside inhibitor, doesn't stop replication, it interferes with it.
barry

Post Edited By Moderator (hep93) : 11/5/2013 6:11:03 PM (GMT-7)

Posted 11/5/2013 11:19 PM (GMT 0)
Barry,

Very good post, they did tell me at 12 week SVR that I was cured. My Liver specialist wanted to wait until SVR24 to call it a cure. I did the Teleprivir last year with interferon and Ribavirin and was pulled off due to adverse sides. What a horrible experience that was.

Have you been cured or waiting for the new drugs to come out?

EzAl 

Posted 11/5/2013 11:38 PM (GMT 0)
in jan. 2012 i had to start tx because of cirrhosis. i went with incivek,peg, and rib. with advanced fibrosis the tx is barbaric. i had severe sides with 3 ER trips and 1 admission for kidney failure. at the end of 24 weeks, they asked me to do another 6 months. but i made it thru. and i am cured. its been 10 months post tx. still having post tx sides.
barry
Posted 11/6/2013 12:04 AM (GMT 0)
Barry, they do last a while, thank god I don't have them anymore.
Cograts on being cured, I know you went through hell.

I find it hard to let go of having hep c and sometimes I forget that I'm cured. Has your liver repaired itself?

EzAl

Posted 11/6/2013 12:58 AM (GMT 0)
the last bx i had was in 1999. i was stage 3 fibrosis. i have no idea how advanced my cirrhosis is. but i feel pretty good. my blood work is normal except for my platelets are 135. range is 150 to 400. its a sign of cirrhosis. my hmo doesnt do bx, without a good reason. ultrasound ,ct, and mri are very poor, diagnostically.
i treated 3 times for a year each time. soc was a breeze for me. incivek + soc is a totally different beast.
but i do need to get a good picture of where my liver damage is
barry
Posted 11/6/2013 1:11 AM (GMT 0)
I had stage 3 liver damage and grade 3 fibrosis. My latest ultrasound and biopsy show no liver damage whatsoever.
Posted 11/6/2013 1:49 AM (GMT 0)
i agree with your dr, thats amazing. livers generally dont respond that fast. from what ive read, regeneration usually takes 2 to 3 years per grade. i would take you to the gurus also.
you said you were und in 1 week, did you pickup a little energy after going und? i was und by week 3, and felt well enough to work out a little. i dont know whether the improvement in fatigue was by getting und, or just hearing the words UNDETECTABLE.
i would like to wish you a very happy, hep c free life!
barry
Posted 11/6/2013 1:58 AM (GMT 0)
Thanks Barry, I was amazed myself. UCLA usually does not make mistakes.

I asked my doc about drinking and he said go for it your liver is fine, just don't over indulge. I'm thinking that my past 3 treatments helped my liver somewhat and handicapped the hep c. The tests sure surprised the hell out of me as well.

I'm just going to lead a normal life and watch it a bit.

EzAl

Posted 11/6/2013 2:22 AM (GMT 0)
UCLA lol! i grew up on the west side a couple miles from westwood
Posted 11/6/2013 4:48 AM (GMT 0)
That's so funny, we probably hung out in the same places.
Posted 11/6/2013 10:28 PM (GMT 0)
Oh god this is such wonderful news, I THINK my consultant is going to try to get me on the Gilead Sofubuvir and ledipasvir trial here in the UK in January, I am waiting to hear maybe monday, I am almost sick with hope, worry and excitement, having failed twice on evil combo tx and had transplant 4 years ago. New liver is starting to scar and I am desperate to save it. Can't believe what you guys are saying, mustn't get hopes up, had so many disappointments like most of you I guess. Thanks again for the info, getting the real stuff here.x
Posted 11/6/2013 10:44 PM (GMT 0)
Don't worry about the treatment, it's a breeze. I had no side effects at all from that combo and it did it's job rather quickly.

You should get your hopes up, it will be approved for the market soon.

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