Thank u so much for your time and willingness to share your knowledge, and most of all, your support. I am very happy for you and the success of your treatment. Your passion to help others to fight this disease is greatly appreciated.
Thanks so much Hector (and all). This has been an incredibly tough time. The support of the community means alot. My Mom just died within the last few weeks too- so am just having a hard time digesting life in general, much less my own personal news. I will continue to read and digest this information, and be thankful for everyone's support.
Hubby is hanging in. Life is back to normal, as always, between treatments...waiting for the next option! Thanks for the good wishes!
No biggie, just don't want people thinking were only a year away. And if doctors are saying this then shame on them as it would be impossible.
Hope all is well with the hubby.
Hi can-do, I know that they may not be available by 2014, and that none of us should count on them being available by 2014. That's why I added the word "hopefully" above. That's just the date that people (news articles, doctors, even hepatologists, people in trials) continue to talk about. I have my doubts that the new meds will be out by then, but of course, I have to be hopeful. I agree with you, none of us should count on them being available by then or base any current decisions on them being available by then. For those who have no other current option available, we have to hope and pray they might be, but understand that realistically they may not be. Since there are so many phases to the studies, so much data to collect and present, the FDA approval process, and then the lag time between approval and marketing and actual availability, no one knows.
Thanks for the reminder and clarification.
Good luck Mike, don't count on these new drugs being approved by 2014 as they are not even in phase 3 yet. Then theres the SVR data, putting all the info together, turning it all over to the FDA then even fast tracked at least another 6 months.
Please see your hepatologist and weigh all of the risks with him/her as soon as you can. Being a post transplant survivor with Hep C and stage 2/2, 8 years post transplant, you may have a year or two before your liver will probably progress to cirrhosis and then it will probably decompensate and fail. At that point, it would be too late to treat. Whether you and your hepatolotigist decide to 1) treat now with triple tx, 2) look for a trial with GS7977 and Ribavirin for post transplant survivors with Hep C, or 3) wait and consider new all oral treatments when they become available (hopefully by 2014), you absolutely have to be under the care of an excellent hepatologist with experience with Hep C treatment, End Stage Liver Disease, and liver failure as well as one who is connected to or works in a medical services facility with transplant services. As others have said above, no one knows how long your new liver will remain compensated, but your risk of quicker decompensation and quicker liver failure is much higher as a post transplant survivor, so you need to be under the care of an excellent hepatologist who specializes in Hep C and liver transplant services. You also should make sure that you trust your hepatologist and feel confident that he/she is advising you and treating you correctly. Every decision that you and your hepatologist make from this point forward will impact your outcomes, your future, your life, and your future treatment options at this point, as you are at a critical point in the progression of fibrosis in your new liver.
Best wishes to you Mike, and I hope you keep us posted as to how your appt goes and what your course of treatment for your liver disease will be.
Hi everyone -
Let's keep this on track. Mike's question was about treating with his specific test results, post-transplant. This is not an appropriate place to debate current treatment options.
"You don't take a cocktail of drugs like INF-riba or INF triple and walk away unscathed. Your body is damaged"
Ah, ya they do and this forum along with many others is testimony to that.
Rambleon, the resentment or perhaps bitterness you harbor because of what happened to you is so obvious in your posts. It literally jumps out in every post and those of us who condone treatment find this constant bombardment of negativity equally if not more frustrating as you do when we recommend treatment. It's unfortunate that your liver was damaged from treatment but for crying out loud, give others the benefit of the doubt and a chance to live a full life. You've made your point, time and time again so please stop trying kick the hope out from under anyone who is willing to try treatment in hopes they will live a longer life.
"As I read the initial post, 56Mike started treatment (presumably asymptomatic when starting treatment), took three doses, developed terrible side effects and went into liver failure requiring transplant.
I could be reading that wrong. I believe it is a fair reading of what was written.
If such is the case, why would anyone treat again?"
Sorry it has taken me so long to get back to this thread...
Rambleon, I agree with your assessment.
"I was diagnosed with HCV late October 2003. The NP at the Gastroenterologist office thought I was at stage 3, and gave me 5 years if I did not try treatment. She recommended a "trial" of Pegintron/Ribaviran. I was still actively working as a Millwright when I started treatment- but needed to quit work after the second injection and became hospitalized after the third and things just kept going downhill after that until transplant."
There is so much unknown information here. The NP though he had stage 3 liver disease. What was this based on? Did he have a biopsy? Maybe he was stage 4. All cirrhotics risk decompensation or liver failure. That is known and he should have been told of the risk involved.
But in the end who knows what caused the progression of Mike liver disease? Everyone reacts to treatment differently. May he can take interferon. Without the actual medical records we are just guessing. So there is no point speculating so I will stop.
"If such is the case, why would anyone treat again?"
1) Because the post transplant patient infected with hepatitis C will quickly progress to cirrhosis, then decompensated cirrhosis, leading to liver failure and death. Not if be when. At least 25% of patients will develop liver cirrhosis after transplantation within 5–10 years. Once cirrhosis is established, transplanted patients show an accelerated natural history with decompensation rates of as high as 40% after 12 months in a short period of time their livers will completely fail, resulting in death. (Getting a first donor liver is difficult at best, getting a second liver in certain parts of the country almost impossible). Unfortunately, many transplant recipients who develop cirrhosis are not candidates for retransplantation, and outcomes in patients who do undergo retransplantation are usually not good.
Mike is at stage II. Stage II liver disease post transplant is when hepatitis C should be treated. Post transplant HCV-positive patients have poorer long-term outcomes after liver transplantation in comparison with patients with other underlying liver diseases.
2) The post transplanted patient now have a healthier, different liver so they may react to treatment differently then when they had their old diseased liver. If the donor liver has a IL28B of CC for example even a patient himself has an IL28B that is less favorable, will have an improved in the chances of SVR.
But if it should turn out the Mike has contraindications to interferon then he may have no choice but wait from non-interferon treatments. Hopefully his liver disease will stay stable until he can get into a clinical trial or the treatment(s) come to market.
Mike and so many hep C infected post transplant patients are in a very difficult position that none of us would ever want to be in. Treatment has always be lacking for post transplant patients with hepatitis C. It looks like we could be on the verge of a breakthrough With GS-7977 + Ribavirin as there is already a scheduled trial just for post transplant patients infected with hepatitis C. Depending on the outcome of this trial there may be new hope for those patients in Mike's position. I certainly hope so.
"Study to Investigate GS-7977 and Ribavirin for 24 Weeks in Subjects With Recurrent Chronic HCV Post Liver Transplant"
ClinicalTrials.gov Identifier: NCT01687270
* Subjects with evidence of chronic HCV (all genotypes) documented pretransplantation
* HCV RNA ≥ 10,000 IU/mL at screening
* Absence of organ rejection as documented by post transplant liver biopsy taken no more than 12 months prior to Baseline/Day 1 visit
* Liver transplant ≥ 6 months and ≤ 12 years prior to screening
* Naïve to all nucleotides/nucleoside treatments for chronic HCV infection
Let's all hope for the best for Mike so he can beat his hepatitis C for good!!!
Hang in there Mike we are rooting for you!
凸 (^_^) 凸
Yes, it is an emotional subject for me, it almost took my life.
Although I agree with you that there is little information from anyone about post tx side effects, your denying the very real threat to some hep C patients is extremely biased and can do harm.
The reason hep C is killing more people in the US than AIDs, is because it destroys their livers and there are not enough donor livers available. That is the fact.
Hep C is the number one cause of liver cancer in the US, that is the fact.
Please stop your missionary zeal to stop people from using interferon. I don't see you doing the same with cancer patients using chemo despite the fact that it is more dangerous and many of them have serious side effects too.
Please, please stop.
To the OP: I'm sorry about derailing your thread. Feel free to send me a pm if you like :)
Not me - I have followed the whole thread since its inception with great interest. I think Advocate1955's interpretation of the sequence of events makes sense. And I agree with OH, you definitely need a "good flexible hepatologist."
I wish you could see a doctor prior to December 14. I tried to get the ball rolling for treatment during a December the first time I treated and it is a very hectic time of year. It was quite frustrating.
Best of luck and Please keep us posted.
Very well put OH, even though I am cirrhotic and treated when it comes to ESLD and Transplants I back off. I feel people like yourself, Hector, and Mikesimon are the go to people here...... Which makes me think of this.
"Better to keep your mouth closed and be thought a fool than to open it and remove all doubt"
"I did not read through the whole thread before commenting above. Perhaps I should have. "
Yes, and maybe you should think twice before giving advice given your lack of experience about the subject of liver transplants and ESLD.
I'm no expert but I did have ESLD. Hep C destroyed my liver and I almost died because of hep C.
I know what it's like to be post transplant. You do not.Things change post transplant.
I didn't want to treat with interferon again but even more than that, I did not want to be facing the same liver disease as I already experienced. I knew I wouldn't get a second liver transplant. Not gonna happen.
I was advancing onto stage 2 after less than 3 years post transplant despite eating well and exercising.
And guess what. Thanks to that nasty drug interferon I am finally hep C free !
This is personal to me and I don't like hearing you tell this guy to wait when his life could be at stake.
The number of livers that interferon treatment may have hastened into liver failure pale in comparison to the number of livers that have been given a second chance due to interferon so the reward definitely trumps the risk in most cases.
"Hep C is the main cause of liver cancer, liver transplantation and causes more deaths than AIDs in the US."
3,000,000 or so people in the US have Hep C. 15,000 die every year. I think it safe to presume that most (but not all, I will grant you) die at an advanced age nonetheless.
15,000 / 3,000,000 = 1/2 of 1%.
Driving cars is the leading cause of automobile accident deaths.
In the post transplant setting cirrhosis can develop within 5 years causing the need for a second transplant. People post transplant do not have the time to wait, that others do.
The reason one treats is to save one's liver.
Hep C is the main cause of liver cancer, liver transplantation and causes more deaths than AIDs in the US.
Mike said: The NP at the Gastroenterologist office thought I was at stage 3, and gave me 5 years if I did not try treatment. She recommended a "trial" of Pegintron/Ribaviran. I was still actively working as a Millwright when I started treatment- but needed to quit work after the second injection and became hospitalized after the third and things just kept going downhill after that until transplant. In the email my wife received from my Hepatologist while waiting for our Dec appt- he said they will never know what caused me to deteriorate so quickly- if my liver disease was even further advanced then they thought- or if the treatmend did my liver in.
Operative words being: "they will never know what caused me to deteriorate so quickly- if my liver disease was even further advanced then they thought"
As I read the initial post, 56Mike started treatment (presumably asymptomatic when starting treatment), took three doses, developed terrible side effects and went into liver failure requiring transplant.
I could be reading that wrong. I believe it is a fair reading of what was written.
If such is the case, why would anyone treat again?
It sounds to me like you have not had the best of care. There should be no confusion about biopsy results. If you already had advanced cirrhosis when you did treatment the first time, that could have had something to do with your reaction. On the other hand, you really could be one of the few who have an allergic reaction to interferon.
I wish you had a good flexible hepatologist.
You must remember you have a different liver now. The reaction the first time was with your original damaged liver.
There is a chance that they could try starting you on a reduced dosage of interferon ( maybe half dose )
to see how you react. You'd need to be closely monitored with weekly labs, as a minimum. If you show no negative reaction to interferon, they could up it to full dose and you could do treatment.
The other option would be to watch and aggressively try to be among the first post transplant patients to get into a trial with the new all oral meds.
I can't address the complications caused by your other health problems as I am not medically trained and only know a bit about hep C and liver transplants.
In contrast to your situation,, I had a biopsy at 6 and 12 months post transplant. Because the hep c was only minimally affecting my liver, the next biopsy was to be in one year. That one showed progression from stage one bridging to stage two.
But the point is, I was told to expect at least yearly biopsies to keep a watch on the hep C.
Now, with my healthy liver, I'm told I may never need a biopsy again.
Sadly, your team has let you down.
This again points out how we all must be our own advocates.
Briefly, if I were you, I'd ask my hepatologist two questions: 1, what does he know about getting you into a trial with the new orals, and 2. is there a possibility to try a reduced dosage of interferon to see how you react.
Wishing you the best of luck,
Sounds very confusing. It sounds like you had Hep C, tried treatment, the treatment was too tough on your liver, you and your doctor thought you had cleared Hep C, had to have a transplant, you and your doctor still thought you had cleared Hep C, but in reality you still had Hep C and it damaged your new live donor liver. It sounds like your new live donor liver is currently being damaged, although there is some difference in interpretations of the stage of damage, but at least one biopsy sample showed 2/2. That progress in fibrosis from 0/0 to 2/2 occurred between 2004 - 2012. I'm not a doctor or an expert, but I would say that you do need to clear your Hep C, hopefully before you progress to Cirrhosis, because after that point both treatment and clearing Hep C will be much more difficult. When you should treat (now with a triple tx which could be too hard on your liver) or when the new all oral treatments (which presumably will be easier on your liver) become available (hopefully by 2014) will be up to you and your hepatologist. I have read that fibrosis progresses more quickly for someone with a transplanted liver who has Hep C. You have two risks to weight with your doctor 1) You are currently at 2/2...do you have time to wait until the new all oral treatments are available, and 2) Your previous treatment may have caused your original liver to fail...if you treat your Hep C now, will that happen again. Only you and your hepatologist can weigh those risks and take that gamble. I think that waiting until mid December to see your hepatologist is probably "safe". As you know Hep C and fibrosis are not diseases that progress quickly, generally speaking, so I don't think 6 weeks is too long. I understand that waiting is hard, especially when some of your information is confusing and contradictory (i.e. what stage of liver damage do you actually have). That is something that your hepatologist and the pathologist who interpreted the sample will have to discuss and determine in order to better inform decisions about your treatment plan.
Best of luck, and keep us posted.
I was diagnosed with HCV late October 2003. The NP at the Gastroenterologist office thought I was at stage 3, and gave me 5 years if I did not try treatment. She recommended a "trial" of Pegintron/Ribaviran. I was still actively working as a Millwright when I started treatment- but needed to quit work after the second injection and became hospitalized after the third and things just kept going downhill after that until transplant. In the email my wife received from my Hepatologist while waiting for our Dec appt- he said they will never know what caused me to deteriorate so quickly- if my liver disease was even further advanced then they thought- or if the treatmend did my liver in. Because they will never know- he does not want to gamble, not just yet. And unfortunately- things are a bit unclear with my biopsies. My 2007 biopsy was 1/0 and the 2009 had 2 different reports- one said unremarkable and the other indicated not enough sample was taken. The one taken during my last surgery in Sept 2012- (large hernia repair x2 for transplant incision) was graded 2/2. I have a few other medical problems now too- had a 3 vessel heart bypass in 2008 (I had gotten strong enough to return to my job up to this time) and now also have steriod induced diabetes since transplant. I took an early retirement in 2009 when I turned 53.
Sadly in the post transplant setting hep C can cause liver damage much more rapidly than pre-transplant. Some have cirrhosis within 5 years whereas before it may have taken 30 years or more.
Was this initial reaction to treatment before your transplant ? You say your reaction to the trial, what trial ? What meds were used and was this pre-transplant. How ill were you at the time ?
Have you been having regular biopsies. If your fibrosis has slowly progressed, maybe you do have time to wait but nobody knows for certain when the new orals will become available.
If your biopsies show recent rapid recurring viral activity, I would go ahead and start treatment.
What my hepatologist told me when he suggested I start tx, was that even if it was not successful, it would help my liver. That was all I needed to hear.
Thanks very much for your encouragement and support. Congrats on being HCV free!