I am new to this (or any) forum. I need advise badly. I am 2-years, post liver transplant, and now have recurrent HCV (hepC) found in a recent biopsy (grade & stage 2). Naturally, I've been on immune suppressents (cyclosporum etal) during this time.
I have been somewhat frantic about finding treatment A.S.A.P., preferrably a Clinical Trial here in S.F. utilizing interferon-free medications, if at all possible. This virus moves quite quickly when immune suppressed.
My problem (one of 'em anyway) is that my only resource has been ClinicalTrials.gov. On that site I have only found one such study for post-transplant, and it was full by the time I read about it (U.C.S.F. & Gilead).
Does anyone have any advise or leads for me? I do not have much time to wait before becoming cirrohic once again. The only treatment that has been offerred to me, so far, is Interferon, Ribavirin+nucleotide for a full treatment year. I am not very excited about this option, particularly now being immune suppressed. I have only recently felt recovered from the surgery and illness , and do NOT wish to go down that road again.
I could really use some advise and leads; thanks for any help you may have to offer.
I think people a lot of ppl who can help are currently offline.
Specifically for S.F. you should hear from HectorSF and Orphanhawk. They can most likely help you.
I really am not knowledgeable in this area but I will tell you that if you can see a Hepatologist at UCSF, that will be your best shot at getting what you need.
I am sure as soon as they check in, they will reply to you.
If it takes awhile, I will post again to bump you up so your question isn't lost.
Good luck to you and in the meantime look at Hector's profile.
One more thing, there will be clinical trial with ribavirin, sobusovir (sp?) and another Gilead drug in the Spring, at Quest clinical trials in S.F.. However, I am not sure the criteria includes post transplant. It is worth calling them though.
Hmm... very interesting and good they are already doing a trial for OLT folks.
Acaba I was in the same boat as you. Started with half-doses of INF and Riba and also Incivek. I cleared or at least UND and have 6 months to go. It's not too bad. I certainly feel better than I did before starting treatment if you can believe that. If you can make it through the Incivek (12 weeks) then I think you can do the rest. The Incivek was tough for me but it is only three months to tough out. The doctor can easily prescribe those drugs even though they are all off-label but if he'll work with you on your blood counts on everything and you can get labs once a week or more in the beginning then you can do it.
thank you so much for your reply. I thought that I may have entered my post incorrectly - I see that is not the case!
I will take your advise and watch for HectorSF and Orphanhawk for their insights.
I just met Dr. Terrault M.D. at U.C.S.F, a wonderful & knowedgable practioner who is willing to take me on as a patient! However, her current Post-Transplant Trial is already full.
She will be using Ribavirin and a nucleotide as an interferon-free trial. [that is where I would love to be right now] Currently, It is being suggessted that I go ahead with the interferon, ribafirin,inhibitor for a year, which as said earlier, I am not to eager to do, especially since all of the new drugs are so very close. James
If you have the time could you please send to me the contact information so that I can follow this up: [Gilead drug in the Spring, at Quest clinical trials in S.F]. Who do I contact? Any legwork with help me out alot.
"I am not to eager to do, especially since all of the new drugs are so very close."
I am guessing your a genotype 1, not sure where you get they are that close, Even if one thinks 3 years are close being your post TP thats along ways away as I am sure you know people post TP can move fairly quick. Plus they have no ideal how well they will work with even just cirrhotics. You have a very good doctor, myself Its her advise I would follow.... Again best to you.
Thanks for your reply can-do-man. Actually, it is this Clinical Trial that is the only trial I have been able to find on clinicaltrials.com. That will treat post liver transplantees with recurrent HCV. I followed it up and spoke with Dr.Terrault M.D. who is running this trial. Unfortuanety, it was already full. My frustration is how am I to find such trails (such as this one, which would be - perfect), in a timely manner? By the time it was posted on the official webpage, it was already full of participants.
Well keep in mind this trial is only into phase 2 so if all goes well there will be a phase 3 but I would guess were at least a year and a half away from that... something you might want to ask her about and if she thinks you should wait.
The trial you mentioned is the only post-transplant hep C trial I have ever heard of with the next generation of all oral non-interferon therapy. As you probably know post transplant patients are the most difficult of all hep C patients to treatment. Response is poor and adverse events often require transfusions and constant monitoring to prevent further damage to the donor liver.
"Study to Investigate GS-7977 and Ribavirin for 24 Weeks in Subjects With Recurrent Chronic HCV Post Liver Transplant"
Conditions: Recurrent Chronic Hepatitis C Virus; Post Liver Transplant
Drug: GS-7977; Drug: Ribavirin
This upcoming trial is a phase 2 trial with only 50 people world-wide. My UCSF hepatologist, who I have been working with at UCSF for over 5 years, is leading all the Gilead and other hepatitis related studies at UCSF. She is the head of hepatitis research and transplantation and is internationally known for her work in the fields of hepatitis and liver transplantation.
She has already picked the 3 or so patients at UCSF.
If this phase 2 trial is successful there should be a phase 3 trial later next year which will include hundreds of patients world-wide and of course more at UCSF. My hepatologist has worked for years with Gilead in Foster City here in the Bay Area so we at UCSF have a special relationship that should allow UCSF to be involved in many of the future trials for Gilead. She is looking for new solutions for the many folks with recurrent hep c which is rapidly destroying there donor livers.
I’m currently in the pre-transplant Gilead trial for us awaiting transplant with hep C and HCC (liver cancer). An Open-Label Study to Explore the Clinical Efficacy of GS 7977 With Ribavirin Administered Pre-Transplant in Preventing Hepatitis C Virus (HCV) Recurrence Post-Transplant
Conditions: Hepatitis C; Hepatocellular Carcinoma
Intervention: Drug: GS-7977+RBV
* Where did you have your transplant performed?
* What options have they given you about treating?
* Interferon, Ribavirin + nucleotide”? What nucleotide?
* Did you treat your hep C before transplant.
* How did you respond to treatment? Relapser, partial responder, null responder?
Send me a private message and I can tell you were things stand at UCSF currently as far as future trials by Gilead, Abbott etc.
Either way you should treat soon. We have seen too many either not being able to treat or getting too sick to treat. I don't have to tell you what the consequences are...
Hang in there. You have options available that weren't available even 2 years ago.
Wait indeed. It has been near impossible to find out just how much time I can afford to wait, already being, post-transplant, immune suppressed, with the recurrent HCV at grade & stage 2. (no crystal balls to look into I guess).
Politically, the suggestion is to start now with the Interferon, Ribavirin & nucleotide for 48 months; thereafter, if I am not cured or have dropped out from side effects, then at least, I would have a more probable opportunity to be selected for an interferon-free clinical trial.
In a perfect world I would prefer to wait (without getting worse) and then taking only the interferon-free treatment down the line. But, I don't think I have that sort of time...
Hector, thanks for your post. I was able to meet with Dr.Terault, U.C.S.F.,at the beginning of this week. Although she had no more room in this study-of-interest i.e. fOR PATIENTS with Recurrent HCV in Post Liver Transplant Patients; she did say that she was willing to take me on as a patient!
Two treatment strategies were discussed: 1) wait and monitor the progression of fibrosis in lue of other interferon-free studies to come about, and 2) treat now with interferon, ribavirin & nucleotide for 48 weeks.
I don't have a crystal ball hence no way of knowing whether I would be making a big mistake by waiting (for #1-above). If there were a way to find out just when some more of these studies are to open, well, that would be valuable news for me. If necessary, I will start the tx therapy (#2-above) but would much prefer to try the interferon-free trial first.
My genotype is 1a. I was transplated at Methodist Hospital in Memphis,Tennennsee 2-years ago. I was given no HCV treatment prior to the transplant nor since. A current biopsy uncovered grade & stage 2 fibrosis.
I look foward to hearing back from you; one of the most difficult aspects of this life challenging event(s) is finding timely & relevent information on which decisions can be made.
Don't worry my friend. If you are in the Bay Area I highly advice becoming Norah's patient. She is one of the leaders in the field. And in the Bay Area numero uno. #1
I mean I could rattle off all of her achievement and credentials but what I can personally tell you is Dr. Terrault besides being known to all in the liver transplant world is also one of the most compassionate, carrying and warm persons you will ever meet. May be alright have seen that.
I have seen her once a week for the last two weeks and she was the one who told me last Tuesday that I will be getting a transplant within the next 11 weeks at most. Happy day!!! Lots of hugs all around after my 5 year journey with cirrhosis and hepatitis C at UCSF.
I can frankly tell you I probably would not be alive if I had any other doctor. She has saved my life more than one and given me options in the darkest of hours.
All I can say is I don't know of anyone who will support and advocate for you like she will. She will tell you the pros and cons, she wouldn't sugar coat anything if that is you doctor - patient style isl. You will know exactly where you stand and then you can make the best choices for YOU based on the options available. I can't say enough good things about her and all of the wonderful people that work for her.
I know the system at UCSF so I can help you navigate your way around.
By the way I have a friend who is going through peg-IFN and ribavirin post transplant treatment now. And another friend who complete triple therapy with Incivek post transplant and was cure. I believe they both had stage 2 liver disease a few years after transplant.
We have our Transplant Support Meeting every Tuesday between 1-2 pm at UCSF. Except Christmas and New Years. If you can come by you will meet other transplant folks you can share your story with and get feedback on. My buddy Jim is usually there and he can tell you about his experience working with Dr. Terrault and currently treating post transplant. He is just of 3 years post now.
Hang in there!
“If my mind can conceive it, and my heart can believe it - then I can achieve it.” - Muhammad Ali
I was gone most of yesterday or I would have replied.
Hector is truly more knowledgeable than I on the new treatments.
What I can do is share my story.
Like you, I am post transplant.
In the summer of 2011, at 2+ years post tp, I was bridging to stage 2. Although I'd relapsed on interferon tx while cirrhotic, my hepatologist said he thought I should do treatment. He said even if it wasn't successful, it would help my liver.
Like you, I really wanted to do the new orals especially as I knew the fabulous results they were having for geno 2.
But I was frightened.
So, I jumped right in, did tx, was undetected at week 4, completed 24 weeks of treatment and now am finally free of that insidious virus.
The best thing I can suggest is to follow Dr. T's advice. Although she isn't my doctor, I know of her reputation and you couldn't be in better hands.
Thanks for your reply(s); it is good to know that there is an actual community out there, and that my instincts are reaffirmed that Dr. Terrault is indeed 'a miracle in motion', I was very impressed and releived to meet her! I've had a difficult time navagating though this HCV journey.
My hepC journey has been one of isolation coursing 40 years. First the years of spotty fatigue with no diagnosis; later, healthful, productive years being told that there was no cure and, "hey you're healthy right?!"; then, those decades of 'nose to the grindstone', building a design/build firm while single parenting, with no time to 'get off of the treadmill' to treat something that, "is not even bothering you"; and then collapse, like going off of a cliff in a broken hanglider; I went from seemingly healthy & active to bloated and discorporating in a six month period; I was evaluated then & told that I was cirrhotic and at MELD 15, not 'sick enough' to list for transplant. Six weeks later I found myself halfway across the continent in a hepatic coma in a hospital in Tennessee! Four weeks later I was not only listed but transplanted as well. The hosipal cut me loose 5-days after the surgery and I lived in a mothball motel room for three months of follow-up, before moving back home to the west coast. Back in the hands of my State's transplant clinic I was only seen once a year for the past two years, with one hospital stay for rejection treatments.
In this lone journey I have never met or spoken to another person that has had a transplant, not pre or post transplant. It's as if it never happened, but it did, and I live with the challenges each and every day. Anyway, this is my way of saying thanks for being out there; I look foward to meeting you all. I think that could be 'cathartic'.
I look foward towards treatment by Dr. Terrault, (as much as anyone can look foward to electively choosing to feel worse in order to feel better). But, I am now comforted knowing that there IS an end-game to all of this, and that there ARE others to interact with, and that I will have the best treatment possible.
Hi, and thanks for your reply to my post. I just posted a reply to HectorSF that I hope you read.
I would like to hear more about your post-transplant, 24-week tx therapy. How you felt along that 6 months time line; I have no idea just what to expect or how best to prepare. I never fully recovered from becoming so ill or from the surgery, in terms of gaining post surgical weight back (I'm now 130lbs but ran at 155lbs for 40 years). So, I still feel weak (and cold most of the time). I wonder just how well I will do on tx in this condition? Perhaps, my inability to regain weight & muscle is due to the recurrent hepC?
How long did you take Incivek, how did the therapy change after stopping it but continuing with Peg/Rib? (assuming that was the cocktail). I read once that those of us who have become so ill as to require a transplant are 'hardened up' and better able to handle further treatment; as if our pain or tolerance levels have risen? Did you find this to be true? (it sounds like a crock to me, but, perhaps not). I realize that each individual responds differently, however, I'd like to hear what you have to say about this.
Well, I should save the rest of such questions til Tuesday. It is nice to finally be able to communicate with folks with similiar questions and experiences.
You are more than welcome to ask me anything. You won't see me on Tuesday as I don't go to those meetings and aren't a patient at UCSF.
I did recover from my transplant rather well despite needing to have three ERCPs the first year due to bile duct issues.
My energy levels dropped during about the 6 months prior to beginning treatment, I think because of my liver being damaged by hep C.
I'm on prograf, not cyclosporin and having had genotype 2, I did interferon and ribavirin therapy not the triple treatment. Comparing my treatment this time to the first time, when I had decompensated cirrhosis, I can say it was much, much easier.
I think it was easier because my liver was so much healthier than the first time around.
My doctor advised me to gain weight prior to beginning treatment which I was barely able to do no matter how much I ate.
I'm small, weighed 100~ got up to 105 and dropped the 5 lbs during treatment. Now, I've picked up a few pounds again, maybe 3?
You might want to write down you questions for Tuesday.
Hector is a great guy and quite knowledgeable. You're fortunate to have him giving you support.
Feel free to send me a private message if you like.
You are in the right place. You have found a wonderful forum with great people who will share information. Orphaned Hawk and Hector will be excellent resources for you since they live in your area and have both had transplants. You have found one of the best hepatologists in the country, so you're in good hands. I encourage you to be in communication with both OH and Hector as they can answer your questions and share their experiences.
As you have already discovered there are rarely clinical trials for post transplant patients as they are in a group of difficult to treat patients. The risks are high for post transplant patients. But the other side of the story is that Hep C may damage the new liver more quickly than it did the old liver. I think it is a balance between monitoring your status carefully and waiting to see when a trial designed for post transplant becomes available that your doctor recommends, treating now while you're still f2, or waiting for new meds that are currently being tested. Whatever you and your doctor decide, I'm sure will be the right decision for you.
You're very lucky to be with an excellent hepatologist at a transplant center. She will take good care of you.
Keep us posted.
I appreciate your reply; I learn from each interaction with others. As I mentioned in an earlier post, I have had absolutely no contact with other post-transplant patients, primarily due to having been ill, transplanted and followed-up in varying geographic areas, and I live in a remote area, 5 hours from the hospital. So, having this opportunity to speak with folks, such as yourself, is truely beneficial!
I have a question that you or perhaps someone else might be able to help me with; maybe I should pose it as a new thread/question? While looking for post transplant, interferon free therapy the only resource I found was clinicaltrials.gov. By the time I found a possible Trial to suit my needs, it was already filled. I imagine that this will occur again even if I'm able to wait for treatment for six months plus.
So, the question is this: how can I find future Trials or practioners that will be running interferon-free treatment before they fill up with existing patients already connected?
Can-do is right~Dr T is the way to go. Ask her.
Hector is in a very small trial now for pre-transplant patients because of his connection with her.
Post transplant patients are the last to have trials as they want to stop the virus before people need transplant, and there are less of us. I'd have flown around the world if I thought I could have gotten my hands on 7977 and avoided doing interferon again.
As it is, I'm glad I did it simply because now I'm hep C free.
I've lived in remote places myself and understand exactly what you're referring to. In fact the only reason I'm close to SF now is due to doing tx last winter.
I'll be moving to north of here soon~
Yes, talk to your hepa about this. She can refer you to doctors who are enrolling people for trials, and she is running some trials herself. In my husband's case, his hepa referred him to the doctors running trials connected to UWMC are located, where is liver care is managed. Your hepa is in a large research based university hospital transplant center, so she is the person who will be able to refer you. It's important to understand the criteria of any trial you are looking at and to consider all of the possible risks and benefits of a trial, but since you are with an excellent hepa, she will help you do that.
Thanks to the three (plus) of you for you replies. To date, upon our 1st visit, Dr. Terault feels that I should begin the tx treatment since any other option is a ways off. I will follow her advice, however, I cringe at the thought of having to tear my body down once again. My recovery from being HepC, Cirrhosis & post-transplant took two full years, and I've only just regained a sense of health (with the exception of being 20lbs. underweight). Being somewhat fragile creates a sense of not wishing to further 'rock the boat', but what choice do I have?
It remains unclear, being post-transplant and at grade & stage 2 fibrotic as to whether I can wait a month, or three or six or more before starting this treatment? As with all of us there are other mitigating issues: I am a single-parent of two college age sons, I've gone from being gainfully employed and somewhat prosperous to losing everything to the costs incurred from this disease and now living on SSI.
Just finding a way to relocate to the S.F. area seems daunting (financially). As an architect/builder I muse on days gone by of beachside, sanitariums in which to convalesce among other patients in similar circumstance. If I had the $$ backing I would design and built such a facility (well perhaps once I am whole again I will take on such a project!). Say, do any of you know of any wealthy, recovered investors that would like to bankroll such a project?!).
I advise my sons to 'never give up' while embracing a sense of surrender, at the same time. So, I will continue to lead by example...
I'll be seeing some of you on Tuesday @ U.C.S.F. thank you again for your interaction through these postings.
Hello! Are there any updates from any commenters on this subject? Some of you might see my comment scattered across other questions lol, but i feel it's the best way to get as many different views as possible :) My dad received his transplant from my bf, liver donor who was only 23 at the time, back in June of 2011. He is now creeping towards grade 2 of scarring and will be starting Pegasus/Riboviron on Monday. He is genotype 2 and hasnt had any issues with rejection. We are looking for more information as far as the possibility of clearing this virus and still having many years ahead? Such a tough rollercoaster we are on. Any experiences will be helpful and appreciated.
I was transplanted in June 2000.
My underlying disease was hep C genotype 1b.
I achieved SVR in June 2004 after treating with Pegasys and ribavirin.
I am doing well today with liver enzymes in the low teens.
I hope I'm saying the correct thing!! I am geno type 2b. Started peg/riba on dec. 3rd. Test were screwed up, so my viral load wasn't tested until the 7th week into treatment. But it did come back undetectable. From what I've been told being 2b is the easiest to clear. I don't know the statistics and I should. How old is your father?? I think after hearing the stats were in my favor I kinda became the village idiot on here. Lol!! I'm much more worried about my liver. Stage 4, but compensated. So again how old is he??
Thanks for much for the responses! Mikesimon, that's fantastic news! that lifted my spirits. What was the grade of scarring at the start of treatment?
Mzkity- Dad is 59. Congrats on your undetectable! They gave Dad about a 65% chance of clearing? Odds in his favor but its still terrifying. I am unbelievably close to my dad and try not to live in fear and pain every day. I know how hard this will be on him, and how dangerous it can be.
My liver histology was probably mild to moderate fibrosis when I treated. I treated shortly after my transplant because the virus recurred very aggressively. I believe I started treatment within 8 weeks of my surgery.
At first I was treated with low dose ribavirin (600 mg daily) and standard treatment with regular interferon (injections of 3 million units 3 times per week). I did that for 52 weeks and never cleared the virus but my liver enzymes did normalize. I stopped for 6 months and by then Peg-Intron was available and I started with a standard weight based dose of Peg-Intron once per week and 600 - 800 mg ribavirin daily. I did clear the virus late in treatment (maybe week 32) and stopped at 53 weeks. I relapsed within 2.5 weeks and 4 weeks later I started Pegasys at the standard dose with one injection per week and 1000 mg ribavirin daily. I cleared by week 12 and extended treatment to 73 weeks. I achieved SVR with that last treatment. I believe that the increased ribavirin dose was the primary reason that my treatment outcome was successful. The extended treatment may have helped but I think the ribavirin dose was the critical factor because I cleared by week 12.
I will tell you that I had a friend who was transplanted around the same time I was who was genotype 2. He treated for 52 weeks and achieved SVR. I do not know what his doses were but a lot of the transplant recipients I know were under-dosed - in my opinion. The last I heard from him he was doing well.
Thank you for sharing the positive experiences. I live with a constant knot in my stomach. I am working on helping myself accept it. I am glad to know there is some sort of hope...sometimes it seems there is no light at the end of the tunnel...and with so much in my upcoming years (wedding...hopefully children and a house etc) I would be devasted for my dad to miss it all.
How are you doing now Mike? They plan on starting him on a low dose and gradually increasing over the course of treatment. They want to treat for a full year, but he will need to hit certain milestones in order for them to continue.
I'm doing very well. I don't believe that a doctor looking at my lab results would have any idea that I am a transplant recipient or that I used to have Hepatitis C. There is life after transplant and life can be very good indeed.
Here is my advice.
Expect the best. Trying to prepare for the worst is a waste of precious time because we can never be prepared for the worst. I think we should prepare our legal documents and our medical directives and then expect the best. And I never like to look too far down the road because, frankly, we can never see that far and all we end up doing is increasing our stress level. Basically, I tried to take treatment one day at a time.
Probably the most important thing is that we must be our own advocate. My physicians were very reluctant to increase my ribavirin dose but I pushed them really hard and finally the acquiesced. I had read enough material to know that I was being under-dosed and that if I wanted to clear the virus I had to make some changes. This was back in 2003 and the transplant community wasn't too high on increasing dosages. I also had to push to get Pegasys because it was a brand new drug and it had not yet been placed on my insurance company's formulary. I pressured my doctor to write a letter to my insurance company in order to get Pegasys. The reason I pushed for that drug is because Peg-Intron was extremely hard for me to tolerate and I figured that Pegasys couldn't be any harder on me than was the Peg. As it turned out Pegasys was so much easier for me to tolerate and I know that I would not have been able to extend my treatment with Peg-Intron like I did with Pegasys. My treatment of 73 weeks on Pegasys was exponentially easier than the 53 weeks of treatment with Peg-Intron.
So keep an eye on the doctors and keep a closer eye on your Father's labs. And read as much information as you can find. I think it is critical to eradicate the virus and I often get impatient with the cavalier attitude some doctors have about treating post transplant.
In my opinion your Father has an excellent chance to clear the virus. I would stay optimistic and on top of everything treatment related. This is great site to learn about this stuff. I say this with absolute certainty - this site saved my life because if I hadn't started learning about this disease and its treatment here I would not have cleared the virus and the way things were going after transplant it was not going to be good.
Mike- thanks for your amazing resonse! congrats on your success! I am willing to do WHATEVER it takes. I had to advocate strongly for my Dad when he was first diagnosed when I was 22. I reached out on sites, researched, took out books from the library, and asked the Doctors questions. I sometimes found myself correcting them. I learned quickly that you have to be proactive. I don't take these things lying down. It's amazing how much of a difference education can make. I have so much gratitude towards people like you who are willing to share knowledge. It's vital. I have had a bit of trouble finding information on treatment post-transplant...a lot of it seemed negative and advised against it. I then started reaching out on sites like this, because I was not going to accept that as an answer. I am very glad he will be doing Pegasys. Hope it works out as well for him as it did for you :)
I received my transplant in July 2010 and although things were pretty rough for a few months I ended up with a healthy liver and a new chance at life. I had mild recurrence of HCV and knew that I wanted to eradicate the virus before it started to attack my new liver. The team at my transplant center allowed me to start Incivek triple therapy and it appears to be working as I am 6 months viral free (viral load was 36 at week 4 and UND at week 8). I will keep on the Pegasys and Ribavirin for four more months. I was a prior null responder to Pegasys/Ribavirin treatment. The first part of the treatment while I was taking Incivek was tough, but getting to zero viral load kept me going. I did get severly anemic and had 3 transfusions before the Procrit kicked in and started working, but as tough as it has been I have still been able to work nearly full time and the symptoms are getting easier to manage daily. My Ribavirin dose was dropped from 1200 mg/day to 600 at around week 5 but that seems to be enough. I have also watched all my liver enzymes return to normal for the first time since my HCV diagnosis six years go. Best of luck to you and your Dad.
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