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1913232 tn?1361457689

sofosbufir "compassion" study

I had a liver transplant in Feb. 2013. I had cancer from Hep C.  Basicly the surgery went well, I have healed, I am now on some very mild immo-suppressants. All would be well. However, I have had a re-surgence of Hep-C with a vengence. it has been such an intense infection it is not measurable. Where pre-transplant I was fairly healthy, and very active, I am now experiancing the effects of acute liver disease from the hep c. If I do nothing, or not respond to clear the virus, I will likely be dead within 3 years. It is that bad. I am a 2 time non-responder to interferon rib/incevik. I will do it again however it has not gone well in the past.
I have been following the Sofosburir news, and, I am impressed.  I have also heard of the Aviator study, through a branch of Abbott. I am trying to get any information on any study or contact information on Sofosbuvir or Aviator. The Med collge of Wisconsin is trying to get me into a compassion study, I do not know at this point with whom or with what. I would love to hear from anyone currently doing one of these studys. Or how to get on one?
7 Responses
Avatar universal
   Hi Uncle Larry:  my husband is on the AbtVie meds, used in that
Aviator study, he is in wk 9.
   He is Treatment naive, and started with a high viral load, of 40 million. He was down to just 60, at week 1, week 2 was under 23 yet still detectable, and his 4 wk viral load was Undetectable.
  So I am thinking this is a great med for someone in yr situation. I also think
that Sofosbuvir would work well, as we have a (very dear and wise) member on here, who cleared his Hep C with Sofosbuvir and Riba, although he is still fighting out his battle with HCC~
   If I were you I would get into one of these studies with a quickness.  If you were a non-responder to the Triple Tx, then I feel you should NOT go thru that again, as I have seen people in stage 3 or compensated stage 4,  go into decompensated stage 4, while treating with Incivek, Inf and Riba.
   Do the smart thing, and get treated wih the 2nd generation PI's. Make sure you stay on this, and advocate for yourself, and bring a second person along, to help advocate...and stay grounded and organized~ you can beat this!
Avatar universal
Hi I got your comment. I hope it's ok to respond on this fourmn. With your transplant being only a few short months ago its not unusual to see a large jump in viral load. As someone mentioned the viral load is not the best indicator of liver damage. The gold standard is the biopsy. My transplant was in 2010. It was a year later (2011in my yearly post transplant evaluation) it was discovered the damage that was being one to my new liver from the Hep C virus. That's when I was told I was stage 3/4 fibrosis. It was also determined then to put me on triple treatment in order to arrest this virus. It didn't work. I was not able to get to the numbers the study required to stay in. That's when I found out about the Gilead post transplant Hep C trial. I applied and was taken as a participant. The results were amazing to me. I cleared the virus in short order (a few weeks) and have been undectable thru and post treatment. I am 30 days post meds and waiting for my 4week post undectable numbers to come in any day. My blood work was the best it's been  post transplant. I have severe osteopenia and osteoporosis due to the liver disease. This has been my biggest adjustments that I have to deal with so far. I have had 4 ( known of) stress fractures in my left knee. Just this week I had 2 compression fractures in my spine. Other than these bone issues I must say I feel great. I can tell the difference in the way I feel not having Hep C.
I think you are thinking correctly by getting after becoming undectable ASAP. I have no idea when the FDA will approve if they approve these new drugs. You must be your own advocate in dealing with your liver issues. Stay as diligent as you can. There are government sites that list trials that are coming up. I think you could find those online.
Again, the gold standard in telling damage to your liver is a biopsy. The viral load even though high do not tell the whole story. As far as the transplant goes you might not feel good for sometime. You have been through a lot. Your body is trying to do damage control. I know it's very difficult but you must rest and let your body heal. I do believe in these new drugs. I like you felt that if I didn't get access to them that I would not have been around to long. So pursue these new drugs with a passion and the very best of luck to you!!
Good luck, God Bless!
Avatar universal
           hey unc,      try this trial, it is for aggresive recurences

                                 nct01779518    just google the trial#


317787 tn?1473362051
Uncle really sorry to hear of your dilemma.  I hope that your liver has not been affected this quickly though after reading of gerard's experience I can see your concern is warranted.
I hope the place that ppmguy directed you to works out for you
I am going to check it out for a friend
1913232 tn?1361457689

Thanks Barry This is exactly what I was looking for. I went to the site, it seems I fit the criteria nicely, and I will start the aplication process this week.
Avatar universal
       sooo cool unc,   i was so excited when i saw this site and trial.  my friend from another forum has had problems getting to where she can tx her virus after hcc and a resection, then hcc recurred and had transplant and now is cirrhotic after 1 1/2 years post trans.      barry
Avatar universal
I was in much the same situation you are larry.  Post LT and aggressive re-occurrence.  

Normally they won't let you do drugs that quickly after transplant because there's a larger risk of rejection in the first year.  

In any case, yes, I'd try to get in the trial - you're really lucky they don't have many exclusion criteria.  Most trials for example teleprevir and others wouldn't allow LT patients.

In any case I'm in something like my 60th week of Riba/Inf/teleprevir and will stop at 72 weeks.  Been UND since about week 6.  

I know the success rate depending on how the situation is anywhere from 60 to 90% so it's not assured mine won't come right back.  Naturally I want a plan B and my doctor said sofosbufir might be available.  

You didn't say what you genotype is but if you can't get in the trial try triple therapy (if you genotype 1).  I started on reduced doses and while far from a walk in the park, I have hung in there.  Importantly it may have bought me time or cured me I hope.

Why can't they make the names of these drugs easier to pronounce?  :)

Good luck Larry

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