"Does anyone have any advise? The only treatment that has been offerred to me is Interferon, Ribavirin+nucleotide for a full treatment year. I am not very excited about this option, particularly now being immune suppressed, and finally recovered from the surgery and illness. "
Which nucleotide? The only nucleotides are in trials. Current commercially available treatments are peg-INF + ribavirin with Incivek or Victrelis which are Protease Inhibitors.
You should to talk to your transplant center regarding or ALL changes in your drugs. And about any medical treatments. Common drugs can cause drug to drug interactions with immunosuppressants that can effectively increase or decrease blood levels dramatically making the combination of drugs very dangerous. Only your transplant center knows your health situation. They are the only ones who should advice you on the best treatment options for you personally.
The only trial for post transplant patients is the Gilead trial which is already full. My doctor will be leading it at our transplant center. It will only have 50 patients world-wide. Being stage 2 you should treat now. Your hepatitis has gone through 2 stages of liver disease in only two years. Time is of the essence. There are only two choices in the end. Treat and hopefully cure the hepatitis or don't treat and you will soon develop cirrhosis, then decompensated cirrhosis within a year and finally End-Stage Liver Disease.
No one post transplant is excited about being ill from the side effects from peg-INF treatments. But there are no other trials and no one can guarantee the Gilead trial will be successful. We are all hoping the trial will be successful as the options for post transplant patients are very limited with poor results.
Once we are transplant patients I'm afraid our only choices are not between good and bad but between the lesser of two evils mostly. You have been given a second chance at life by someone donating their liver to you. Unfortunately once a person has a transplant it is a life long commitment to immunosuppressants and lab tests. Otherwise we will have acute or chronic rejection. If you don't treat our hep C either before or after transplant I'm afraid the outcome is usually the same. Which is why transplant patients with hepatitis C post transplant have the shortest life spans of all liver transplant patients.
We all have a choice. We either fight what is trying to kill us or we give up let nature take is course.
Talk to you transplant center if you want to fight. I hope you do.
Cheers!
hector
thank you...20 years in to this is I am playing catch up learning...you, Hector and some of the others are so knowledgable and it is very much appreciated. at my last appt.w/doc he was leaving room and turned and put a firm hand on my shoulder and told me to do what I do best which is research and read...information...and reaching out is what I need to do so this is one of the reasons I started on this site...to learn. Thank you to you all.
Fantastic news!.......Love hearing this. Keep moving forward brother.
I'm not Hector but we are friends and I can help clear up a few things.
First, Hector has not had a transplant, yet. He is on the list and is supposed to get one within the next couple of months.
I have had a transplant.
I did treatment while decompensated and relapsed. Treatment simply doesn't work and can make your liver worse if your cirrhosis is too advanced.
If your liver is too damaged, you will indeed still need a transplant even if you get rid of the hep C. The advantage, of course, is you won't need to do treatment after your transplant.
In the post transplant setting,liver damage from hep C can happen much more rapidly causing cirrhosis within 5 years.
I did treatment 2+ years after my transplant and now, happily am hep C free.
Hi Hector...I am so glad you are doing so well...YOU ARE A FIGHTER...much like me. Have a 2 questions for you. Know you already had a transplant. Doc stopped the TX on me because he didn't want me to possibly die because of my liver being so decompensated. I go the 26th for his transplant clinic... 1st question is did you see the article in the Wall Street Journal on Nov. 15, 2012. Business Technology section on front page. Titled "Hepatistis C Drug Derailed by Deal". Was this was you were encouraging everyone to read and get behind. My doctor is quoted in it.. My question 2. Can GS7977 be taken by someone with a decomposed liver and would I still have to get a transplant??? Watching your progess with all your posts....heart_in_the_keyes
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). I have been somewhat frantic about finding treatment, preferrably a Clinical Trial here in S.F.
ClinicalTraial.gov has only found me one such study, and that was full by the time I read about it (U.C.S.F. & Gilead).
Does anyone have any advise? The only treatment that has been offerred to me is Interferon, Ribavirin+nucleotide for a full treatment year. I am not very excited about this option, particularly now being immune suppressed, and finally recovered from the surgery and illness.
I could really use some advise and leads.