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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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Avatar universal
You have been such an inspiration and a help to so many (including me) on this forum.  I have not been posting for months, dealing with my husband's post transplant complications.  There are no words to express how I feel after reading this thread today.  

I remember well how we felt when we learned that my husband's Hep C had returned (after transplant) following 8 months of being undetected.  Being undetected over 47 weeks of treatment only to have it return a month later is unimaginable to me.  But I also know what a fighter you are and that there is  a reason for everything. I have to believe that.

Please know that you have many friends you don't even know thinking and praying for you and hoping that you are doing well.

Nan
Helpful - 0
317787 tn?1473358451
I'm baack,
we always knew you had a heart of gold, now you will have a liver of gold.
Helpful - 0
317787 tn?1473358451
Me again, day late dollar short Dee.  I am thinking of changing my name.  I always arrive late to the party.

You saved my life, you made me realize how important it was to pick myself up after relapse and go on to the next tx.  You kept me going and continue to do so for 5 years or more now.  Gosh, times flies when we are having fun and even when we aren't it goes really quickly.
You are my inspiration and give me hope..ok..getting to gushy even for me.
Love
Dee

My thoughts and prayers are with you....always, Dee
Helpful - 0
683664 tn?1330966324
Thinking of you, and hope the treatments are going well.  More hugs for you...
Helpful - 0
Avatar universal
Signed on this morning after many months.  I saw this post about a relapse and read it without realizing who had posted 'til the end.  I'm sorry.  I'm sorry for all who relapse, but Hector this is harder than usual.  First class post by a first class human being.  Thank you for your strength and inspiration for all.  Godspeed.
Helpful - 0
Avatar universal
Still with you here in cyber land, my heart is with you along this journey.
Many Hugs,
Elaine
Helpful - 0
Avatar universal
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!!!!
Helpful - 0
2111792 tn?1342704627
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
Helpful - 0
1815939 tn?1377991799
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.
Helpful - 0
Avatar universal
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
Helpful - 0
220090 tn?1379167187
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
Helpful - 0
4896357 tn?1360670904
I am sorry Hector. You deserve so much better. :(
Helpful - 0
683664 tn?1330966324
I was sorry to hear you'd relapsed, but just as you said, treating the cancer and preparing for transplant is the priority now.  I'm sending up more prayers for you, hoping these amazing medical advances will cure the cancer so that you can move forward.  This community needs you, your voice and your wisdom and knowledge, so hang in there, Hector!!  

Lapis
Helpful - 0
412873 tn?1329174455
You are an amazing man and have been such an inspiration for us through the years.  I wish you all the best with this series of procedures.

Isobella
Helpful - 0
1986676 tn?1329862471
Man of steel.
Wishing  you the very best.
With your upcoming treatments.

Reva
Helpful - 0
446474 tn?1446347682
Thank you very much. I am hoping for the same with all my might.

Howie.
Helpful - 0
446474 tn?1446347682
I am so happy for you! That is the best thing I have heard lately. Thank you.
Thank you for brightening my day and the excellent advice.

I was at the cancer center today and it really got to me. I was okay for a few days and now I can't get my thoughts of death out of my mind. It is haunting me and I feel nauseous from it. You are absolutely right. I must try to stay in the moment and take it one day at a time.and keep hope alive.

Thank you for writing. You really turned my day around.
Live long and prosper my friend!
Howie
Helpful - 0
Avatar universal
Howie, I am so sorry to read that the dragon has returned and that you are still fighting the HCC.  You are the champion warrior of all time.  I will keep you in prayers and look forward to hearing that the CyberKnife has cut away the cancer, that you get a transplant and that you are living Hep C free with a new liver.
Helpful - 0
Avatar universal
Howie, I too am so sorry to hear of your Hep C  relapse. I just received my 12 week UNDETECTABLE call from the  Gilead trial that you turned me on to in December of 2012. It was the post trans, cirrotic , previous non-responder trial, that only  43 people in the world got in to. I could never thank you enough for your compassion and true kindness. As Dr. Bob Rotella the golf coach teaches so well to stay in the present, and not get ahead of our selves! Not getting ahead of ourselves, or dwelling about the  past is our best state of mind to improve. Getting this cancer under control and then the transplant will follow. I am proof that this Hep C can be arrested post transplant!
Hang in there, and if there was anything, that any of us on this great site could do for you, all you would have to do is just post, and I know we would all move mountains for you at the drop of a hat!!!!
We all love and  respect you. Peace.
Helpful - 0
163305 tn?1333668571
Go daddy-o go !
Helpful - 0
Avatar universal
My heart goes out to you.
Keep fighting Hector, you know how to do it, you did it many times before.
I hope your cancer stays under control and you get the transplant soon.
And then with new drugs the HepC has no chance.

Thank you for being such an inspiration for us.
Thinking and praying for you man.

Jeff
Helpful - 0
2059648 tn?1439766665
Good Luck!  Your on my mind often.  
Helpful - 0
4670047 tn?1375730401
That's great news!!! :):):)!!!
Helpful - 0
446474 tn?1446347682
Thank you all for your warm comments. It means a lot to me.

I have been approved for treatment and am now waiting for the schedule for when all the procedures will be performed. The treatment will occur over 3 1/2 weeks. I am hoping to get this started as soon as possible.

Grateful
Howie
Helpful - 0
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