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446474 tn?1446347682

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
45 Responses
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5720485 tn?1373563055
Agreeing with can- do.  You are a pioneer for us. . . And handling such dissapoinment with clarity and grace, that I'm sure I would never be able to do like you have.

I wish you only success with your CyberKnife treatments as you continue to pioneer on.  As I watch for your new news Hector I also keep you in my prayers.
Shyrl
Helpful - 0
163305 tn?1333668571
Damn !
You are dealing with this amazingly well but I am majorly pissssed off !!!

You know my heart and thoughts are with you, wishing you only the very best.
huge bear hugs,
OH
Helpful - 0
4113881 tn?1415850276
Your an amazing person....fighting this thing with so much class. Wishing you success with the cyber knife treatment.
Helpful - 0
4670047 tn?1375730401
I agree with can-do also! Keep truckin, as I know you will. Best to you!

Kitty
Helpful - 0
Avatar universal
I love your style Hector and I also believe that you're going to beat this thing and be well.

Good luck,
Mike
Helpful - 0
Avatar universal
I agree with can-do, I just know something good for you is going to happen.
I am praying for you my friend and always here for you, no matter what.
Helpful - 0
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