I'm so glad they found this early so it can be ablated. It sounds like your medical team has a good plan to get you fixed up and back to business quickly. It's another set-back, but that's all it is, although I know you are getting pretty sick and tired of set-backs. One thing is for sure; in the future, if somebody wants to know how to kick dragon butt, we'll know who is the most experienced to send them to for answers.

 Wishing you well and prayers sent for you RC. Keep us posted on your progress.

I think we all were waiting on some news and so glad to hear of the plan and a date. AND the date is soon so you will not have to wait too long and mind screw this to death. Not saying you would but I know I would

Keeping you in my thoughts and prayers RC.

Hello, Hello RC,

Great to hear from you my friend! How sweet it is that you and the docs have a clear path forward.

We're glad to hear that your docs are being aggressive and moving forward immediately, all very good news.

The fact that this is still relatively small and (capsulized?) shows that your body has done well in keeping it contained ... very good news.

You sound good, you've got a good medical team on it, you've got Ragdoll and we'll be here every step of the way.

First things first then you'll be on a nice, sweet ride with the cutting edge DAA's and this will all be behind you.

Thanks for touching bases, we are ALL glad that everything is being addressed and your team is moving forward ...

Keep us posted, give our best to Ragdoll and know that we are here for ya.

Dave

Hi RC, good to hear from you! 

We`ve all been anxiously waiting for your next update, and I`m so glad your medical team have worked out the best plan of action so quickly with you!  Knowing exactly how they will be removing the tumour must have taken a weight off your mind at least, and sounds like you can clearly see the way forward now. 

It`s strange how things happen sometimes, and even though it must have been such a shock for you, thank goodness the tumour was picked up when it was thanks to the Polaris trial application process. 

I`ll be thinking about you, we all will, and wish you all the best, and a speedy post op recovery.   Hang on in there, and good luck!  

Knowing you have HCC the outcome is not as bad as it could have been. Thank God for that! That they can poke a hole in you and be done is a great plus. Recovery time is much quicker!

I have a partner in California that they found cancer in the "Low Rent" district but it was roughly a little less that 50% of his Liver. They cut the whole thing out just on the border of 50% mind you. This was last year. The Liver itself grew back very quickly. I was amazed. Today he hits the gym on a regular basis.

My heart sank for you when you made your short announcement and I knew you were in shock. This now is much better news with a strong prognosis for good!

The trial did serve a purpose as it led to the early discovery so use that as a good thing and move forward brother, move forward!

Jimmy

Hi All.      The doctors and I have a plan forward now.  I had a MRI on 4-1-16. They found a  1.5cm HCC tumor, and a couple other spots of intrest. I had passed my blood work screening for the POLARIS 4 trial with Gilead, but because of my history they wanted to do a MRI to make sure I did not have HCC. You cant be in this study if you have HCC . The last MRI I had was  9-30-15 just last fall and it showed a few spots, but one spot was suspicious for HCC , had a LI-RADS 3.  Well this time they found a spot that was LI-RADS 5.  In section 5 of my liver there is a 1.5 cm tumor, it lights off with contrast,also shows to be in a capsule?? The doctor said the tumor was in the high rent district of my liver, meaning it is close to blood supply and bile ducts, and it needs to come out now. On 5-19-16 I will have the surgery to oblate the tumor. They will also remove my gullbladder.  Then it's MRI"s every 6 months to watch for more hcc.  I was crushed that I couldent be in the Polaris trial, but we found this tumor early/small and that's a good thing? As far as treatment for hcv , looks like I will wait for Gileads triple that should be available in 2017. SOF-Vel-gs9857.  (These are the Polaris drugs).    The surgery is laparoscopic , recovery is 4-5 weeks. RC 

Yes RC, so glad you are back on the grid! WE all have missed you. This has been a big bump in the road and a hard thing to swallow, but you and I have been thru a lot the last 30 years and we can beat this too.   We have a great medical team working on this.  Plus, we have all these amazing friends on the forum.   Keep on fighting!  

Your Ragdoll , CC

Hi again RC... I`m so pleased to read your post this morning, you`ve been in my thoughts a lot lately and it`s good to see you back here. 

It`s perfectly understandable that you needed some space to take it all in and prepare yourself for the next fight, and we know you`re going to get through this.  Just take it step at a time, you know we`ll be walking right beside you and giving you all the support we can.

Look after yourself well, and whatever else you do.. keep breathing!!   

Big hugs to you and to your wonderful wife...  we`ll be waiting to hear from you.. 

Hi RC,

understandable how winded you must feel. Thanks so much for checking in again. We are all behind you.

Syd

Hear, hear!

Exactly Mike! - I couldn't say it better.

Definitely the wrong one to mess with.

Ditto from me.

The day is coming.

C.

 I figured you were re-grouping after that sucker punch, and I knew you would let us know what's going on with you when you got ready, and I know you will continue to fight just as hard as you always have, and I know I'm going to enjoy the hell out of watching you overcome all this and come out victorious in the end, and I know every member here will be here supporting you through it all, and I know that dragon picked the wrong one to mess with. Wishing you well RC!!!

Hi RC,

Glad to hear from ya, Thanks for posting as/ when you felt up to it.

I don't blame you for backing up and regrouping ... no doubt this all hit ya hard ... I think you got the ol' 1-2 punch, right in the solar plexus.

But ya know what ... you've got the strength to keep on moving forward and fight back, I know ya do.

We'll be right here and we are ALL rootin' for ya ... we're here so you can vent, we're here as you need support and friendship ... We're here for ya RC!

It took a lot to post again but you did and we appreciate it and you'll be glad you did too.

Keep us posted, we'll help you find your way through the maze ...

Say Hi to Ragdoll for us, you two are a great team! We're here for both of ya.

Your friend,

Dave

Hi RC,

Been keeping you in my thoughts and prayers too buddy. I'm glad to know you started breathing again. You keep it up and let us know what's going on when you feel like it. You have a lot of friends here and we're going to stand with you all the way through this. Take care of business like you own it. You're going to prevail Brother, I know it. 

Brother I have been thinking a lot about you. You are in my prayers and I am not just saying that.

Stay with us brother. Please.

Jimmy

I felt sucker punched, all the wind knocked out of me , you know that feeling when you wonder if your going to start breathing again!  I think I just took my first breath in 2.5 weeks

RC

HI RC, I was wondering how things were going for you, and I`m so sorry to read this news... what a blow when you were all set to start your Polaris trial.

You`ve dealt with one setback after another in your quest to be free from Hep C, and I have no doubt that you`ll deal with this with the same determination and courage that you`ve already shown.  It`s just going to take a while longer, but you`ll get there in the end, I`m sure.

You know we`re all here for you, and we want to do all we can to support you... you have the best support group ever in your corner!  Thankfully you have your wonderful wife by your side, and together you`ll get through this.

Keep us updated, we`ll be checking up on you! 

Big hugs.. Jill

Hi RC,

I really hope this is just a glitch in treatment for you. if anecdotes help, one of my good friends who went through 24 weeks of treatment last year, was asked at his 24 week appointment, do you want the good news first or the bad. The good was that he is virus free, the bad that they had found a small tumour on his liver. They used some new technique, to blast it and at 6 weeks check up there was nothing there.  Nine months later, he has his energy back,  is cycling all over town and is still cancer and hep c free. 

Take care and try to stay positive.

Big hugs,

Syd

RC, I've PM'd you. C

Thanks all.  I will post the last MRI tomorrow.  RC 

 I'm sorry to hear this RC. You've had a tough enough time already without another obstacle to overcome. But it can be done and if anyone can do it, it's you. You've already proved that you are a fighter and you certainly have everyone here on your side and backing you up. Keep us up to date on what's going on with you. We'll be here for you anytime!

Hi Robert,

Sorry to hear the news. Relapsing twice is bad enough, but the HCC is a real shame.

Hopefully it can be resected or ablated. Post the MRI report if you want an opinion. Best.

Hey RC,

Sorry to hear the news my Brother. What did you learn? Mass or lesion? Tell us or send me a PM when you feel like chatting. It has to be more than a shock to get that kind of news when you're about ready to enter into a trial. Well, I know you and this won't stop you from reaching your goal of SVR. But now you'll have to stop at the HCC Junction and dump that load alongside the track. Then head forward to SVR. You'll do it, we've seen it done time and again. 

You let me know if I can do anything. Say hi to the Mrs., you tell her we're here to talk anytime. We're all here to support you through this, so don't forget that. If'n you don't check back in, we're gonna come looking for ya....

Not long now till you're 100% well...........Early congrats

Totally with you RC! Do what you gotta do, my friend.

darn tooting we are all with you. The zeros, the 1s, 2s and 3s. 

Hey RC,

Ditto, WE ALL stand with you, we'll see you through the HCC and we'll see you through the HCV ...

You're getting good at backing up and regrouping and moving forward ... you of anyone here can roll with this and come out ahead.

Our thoughts and prayers are with you and Ragdoll.

Don't hesitate to lean on any one of us ... we're here for ya.

Positive Thoughts will help ... we'll think them right along with ya.

Dave

Well brother the whole Family here is standing with you and not just the 3's.

God Bless!

JimmyK

HI all, I went back and got caught up on myself, reading this thread again and seeing where I'v been in my journey to kill the 3a monster. Looks like a couple tumbles with RIBA & SOF short tumble with peg inf.  But the virus always hung on a little harder/longer than expected.I worked hard to get into the Polaris 4 with Gilead. Actually made it on paperwork , but the MRI 4-1-2016 shows Hcc , and you can't get into this study with HCC .  So I guess I will flip over from trying to kill the virus for now and change armor and fight the HCC first then come back with all the new daa's and really kill the dragon! I'm watching all you other 3's out there and want you to know that I got your backs!!      RC

    Edit-  you know I have all your backs.  1-6   I just have my favorites!   RC

Matt, I checked out the study you mentioned, It"s for type 1, I"m a 3 . They also dont have a study location for this study in Wa. State.   Thanks for looking out for me.  I think I have a  re-treatment offer coming soon.   RC

Hey Robert

Good to hear from you, Abbvie has a phase II trial for patients that have relapsed on a previous DAA treatment, Abbvie is trialing its 2nd generation NS5A (ABT-530) & its NS3 (ABT-493) these DAA's have a very high barrier to resistance

Here is the link

https://clinicaltrials.gov/ct2/show/record/NCT02446717?term=hepatitis+C&lead=abbvie   

A Study to Evaluate the Efficacy, Safety, and Pharmacokinetics of ABT-493 and ABT-530 With and Without Ribavirin in Adults With Genotype 1 HCV Who Failed a Prior DAA Containing Therapy

Robert, quite a few members have failed your last protocol and found success with Harvoni because it contains two DAA's, you probably realize this but the multiple DAA's are the way of the future for HCV treatment to control the RAV's and all the newer drugs have higher barriers to resistance. One of the important things to know about your HCV is your exsisting RAV's that you might have because some DAA's do better on particular RAV's than others.

The labs are also coming out with more tests that can I.D. RAV's , in additional to the deep sequencing that the clinical trial do on there patients.

Your time is coming again to re-treat with much better drugs.

matt 

which end of the camel will you be responsible for?

I usually spend about two hours a week looking through the trials,I refine my search to look at recruting studys, and active studys.  I just dont see a lot of people who are  on trials starting new threads.   18 months ago there were lots of folks on trials and it seems like the trials have really slowed down.  RC

Darn! Thought I might convince you to go in on a Camel with me 

Ya Tig, I have seen the milk one for some time now!!  Talk about milking something for everything its worth.   RC

Hey RC,

I saw your post and took a look at the clinical trials website. There are over 1700 entries, most of them over, not recruiting, etc., but there are listings of available and recruiting trials. I'll leave a link to the main page, but found a trial, currently recruiting that I found interesting, sort of funny actually, but I'll reserve the comedic statement for another day, lol! It's a new triple therapy and goes to show you that there isn't anything they won't try to beat this disease. Here's the title and link to the information:

New trial: Effect of Camel Milk on Chronic Hepatitis C (HCV) 

https://clinicaltrials.gov/ct2/show/study/NCT02216045?term=Hcv&rank=157

Main Trials page: https://clinicaltrials.gov/ct2/results?term=Hcv&pg=1

I pop in here from time to time and don't see any new clinical trial threads started?   What's going on?   Have the trials all been done?      RC

thanks for looking TIG..     P/M sent      RC

RC,

Just a follow up... I have scoured every resource I can find and see no mention of continuing care following your study. It does appear that the FDA often requires a 3 year followup registry for failures. I would contact Gilead or the trial center your treatment was associated with and ask if there is any available (ongoing) care for the study participants that failed to achieve SVR. Your study nurse should have record of anything like that. Sorry I'm unable find more, but hope this helps.

Tig

Hey RC,

I'm not familiar with that, but will do some looking. I recommend that you keep this post active periodically, so people see your inquiry. We have new members joining all the time that may have some information on your study. One question, have you contacted your study administrator regarding this? Might be an opportunity to pick someone's brain. Good luck!

Tig

The Gilead Trial I was on was  GS US 334-0153      Has anyone on this trial that failed treatment been offered retreatment  in this trial as a extension, or a different Gilead trial?  The trial was over in January this year.   RC

Welcome back, RC. Good to hear from you and see that you're back in the saddle again. The Harvoni picture will come into better focus these next few weeks. Do hope you're able to snag some suitable insurance. Has the clinic given out any info on the re-treat option?

thanks LC   im waiting for the HARVONI  that was approved 10-10-14.   I will look into better insurance at open enrollment Nov 15.   RC

Thanks Mike.     Im comong out of isolation.   With decompensated cirrhosis you did good to go un at week 6, 24 weeks of treatment should do it for you.  My treatment arm was only 16 weeks and if i could have gone 24 it may have killed it all.   So im waiting for the next great combo R/X.

   RC

robertsamx wrote:

---

Its been a few months. Im doing ok, still cant sleep?      Geting the relapse call from study  Dr   knocked me out.      Thats a hard call to take.   Anyway im just waiting to see if trial is going to re-treat all that failed treatment.    RC

---

 I'm sure this news is tough to deal with, but it certainly does not mean failure. I'm taking Sovaldi & Ribavirin 1000 and I often think about 'what if I relapse' because of decompensated cirrhosis or some HIV related issue, and I'm working to get all the info together for a plan B, just in case. I've been on this Sov/Riba Tx for 12 weeks and have 12 more to go. I've been UND since week #6 so my hope is strong. But if I do get that call, I would like to think I'll be able to piss and moan and break some things and be impossible to get along with for a few days, then I'll realize that there's more work to be done and the tools are available for a plan B. And it's a much better plan than HepC sufferers had just a short time ago, which was none in some cases. I hope your trial will re-treat, but if not there are other options. So hang in here Robert. Isolation is a bad move right now so keep posting here and let us know what's happening with you.

Its been a few months. Im doing ok, still cant sleep?      Geting the relapse call from study  Dr   knocked me out.      Thats a hard call to take.   Anyway im just waiting to see if trial is going to re-treat all that failed treatment.    RC

Feeling badly for you, RC. I know the riba was a real challenge for you, throw in the extra time you took to clear and all the waiting and it must have felt like being kicked in the gut when you got the news. You'll have to rest, recover and climb back on the horse, I'm afraid. Has the clinic spoken to you about any re-treatment specifics since the relapse?

wayne

Sorry Robert that you too, are having to deal with the issues, questions, and uncertainties of relapse. I do understand some of the thoughts and concerns you may be having at this stage.  Most here being previous non-responders or relapser's also have some insight of what you are going through.

I have no idea where my v/l is at this point.  4 weeks post tx it was around 8,000.  It would be nice to know where the levels are now, but I guess it really doesn't matter.  We are given such high hopes only to have them dashed.  To call this a "setback" is an understatement and simplification.  Work for me at this point is probably a good thing.  I find keeping busy, and staying focused on those things we have to be Thankful for helps. 

I had considered leaving the forum after relapse because I didn't want to bring others down.  While sometimes difficult, seeing and knowing others have found SVR    is a good thing.       Be well sir.  

robertsamx wrote:

---

Its been a tough 3 weeks.  On Tuesday July 2, I got a call from the study Dr.  My 4 week end of treatment results were BAD.   I  Relapsed, my V/L was in the millions.  Its been very hard. Sorry I took so long to report this to the forum.  RC

---

I'm so sorry, Robert.  I know how devastating it is when tx doesn't work out the way we hoped and believed it would.  Stay strong.  Hard to imagine in this moment but everything will be ok. 

Hi Robert,

Sorry to hear the news. Perhaps you would have made it on the 24 week arm, but who knows. As you weren't Undet. by week 8, it's not really surprising. Maybe Geno 3 cirrhotics need 48 weeks.

It's just a temporary setback. Take it easy and get ready for the next round. The 'rescue' your Trial Nurse was talking about was probably Sovaldi/ Ledipasvir. Your time will come. Cheers mate.