Aa
After 48 weeks of Sofosbuvir + Ribavirin Relapse
I got a call from my hepatologist tonight notifying me that my HCV has returned one month after stopping 48 weeks of Gilead's Sofosbuvir + Ribavirin treatment.
I was 1 of 50 of the first cirrhotics to treat using this therapy.
"An Open-Label Study to Explore the Clinical Efficacy of Sofosbuvir With Ribavirin Administered Pre-Transplant in Preventing Hepatitis C Virus (HCV) Recurrence Post-Transplant"
I was undetectable by week two. Continued to be undetectable for 47 weeks.
I am genotype 1
IL28B C/C
Advanced cirrhosis and untreatable liver cancer.
My hepatologist asked Gilead if we could get more Sofosbuvir to get me undetectable before transplant preventing my new liver from becoming infected with the virus. Our request was denied due to safety concerns because no one has ever treated beyond 48 weeks with this drug combo. Oh well we tried. Nothing else can be done now. It is what it is.
I am disappointed but not upset or anything. I gave it my best shot and was grateful to be in such a important trial. I knew it was a gamble from the beginning. The treatment was easy to do with minimal side effects so I can do it standing on my head if I have to again after transplant.
My focus now is on my liver cancer. I have to get that under control soon and get a transplant to stay alive. All else is trivial. If I can beat this cancer, I can beat hep C with new treatments.
On to cancer treatment #5 with CyberKnife radiation treatment for untreatable tumors. I will be the first patient at my transplant center to have this treatment for liver cancer. Depending on how my treatment goes the transplant center is thinking of adding this treatment as an option for others in the future with HCC. I am happy to be a pioneer if I can help others with their HCC.
Life goes on with or with HCC. Hep C doesn't define who I am or how I want to live. I have lived with it for over 40 years with it a few more months will make little difference.
Cheers!
Hector
I was 1 of 50 of the first cirrhotics to treat using this therapy.
"An Open-Label Study to Explore the Clinical Efficacy of Sofosbuvir With Ribavirin Administered Pre-Transplant in Preventing Hepatitis C Virus (HCV) Recurrence Post-Transplant"
I was undetectable by week two. Continued to be undetectable for 47 weeks.
I am genotype 1
IL28B C/C
Advanced cirrhosis and untreatable liver cancer.
My hepatologist asked Gilead if we could get more Sofosbuvir to get me undetectable before transplant preventing my new liver from becoming infected with the virus. Our request was denied due to safety concerns because no one has ever treated beyond 48 weeks with this drug combo. Oh well we tried. Nothing else can be done now. It is what it is.
I am disappointed but not upset or anything. I gave it my best shot and was grateful to be in such a important trial. I knew it was a gamble from the beginning. The treatment was easy to do with minimal side effects so I can do it standing on my head if I have to again after transplant.
My focus now is on my liver cancer. I have to get that under control soon and get a transplant to stay alive. All else is trivial. If I can beat this cancer, I can beat hep C with new treatments.
On to cancer treatment #5 with CyberKnife radiation treatment for untreatable tumors. I will be the first patient at my transplant center to have this treatment for liver cancer. Depending on how my treatment goes the transplant center is thinking of adding this treatment as an option for others in the future with HCC. I am happy to be a pioneer if I can help others with their HCC.
Life goes on with or with HCC. Hep C doesn't define who I am or how I want to live. I have lived with it for over 40 years with it a few more months will make little difference.
Cheers!
Hector
Howie,
Though we have never met, I consider you a friend. I don't know for sure I would have been able to hang in there like I did without the advice and just plain hope you gave to me and plenty of others here on this site. Your wealth of information is unmatched here. I have seen many times people tell others "maybe Hector will chime in" and you always have. You have made this site a much better place to be, and I know there is not a person on here that is not very deeply moved by your toughness and fortitude in the face of circumstance that would no doubt be overwhelming for most of us. I will be praying for you to have all the success you deserve!!
God Bless you Hector!!!!
Though we have never met, I consider you a friend. I don't know for sure I would have been able to hang in there like I did without the advice and just plain hope you gave to me and plenty of others here on this site. Your wealth of information is unmatched here. I have seen many times people tell others "maybe Hector will chime in" and you always have. You have made this site a much better place to be, and I know there is not a person on here that is not very deeply moved by your toughness and fortitude in the face of circumstance that would no doubt be overwhelming for most of us. I will be praying for you to have all the success you deserve!!
God Bless you Hector!!!!
I read that a diamond is just a lump of coal that handled stress really well... you must have a 10 kt. sparkle going on by now!! As always, you're in my thoughts and prayers!!
Hugs from Texas!
Janette
Hugs from Texas!
Janette
I am so sorry that this treatment did not work for you. I know the HCC is now your focus as well as getting your transplant. Then you can treat the Hep C. I admire your courage, attitude, and resilience. Hang in there. I am hoping the HCC treatment is a success.
Sending you hugs and best wishes.
Sending you hugs and best wishes.
I am sorry to hear this. I know that the liver transplant is likely to result in a virulent HCV recurrence and all sorts of nasty complications with the graft if you are not clear of the virus. I am disappointed in Gilead's response. Is it not possible to approach them again through your clinicians and perhaps your congressman, offer them a signed waiver of responsibility?
I'm a Buddhist, so I'm sending you metta.
V
I'm a Buddhist, so I'm sending you metta.
V
Your strength and intelligence never cease to amaze me. Here you are trying to comfort me, while you are having more serious problems yourself. You deserve the best and I am hopeful you will get it.
Eric
Eric
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