Hey Sofi

Happy SVR, its a great day for you one to be cherished and remembered.

matt 

Congratulations Sofi!

That is great news. i hope you are feeling better too.

They just released another one for GT 3 .  Maybe we will get lucky and here something today.

Gilead just had two press releases on their website. One with post transplant results and one with HIV / HCV  results. I guess they are going to hold off on the ION's until later in the meeting. Oh well, we should know the results in the next few days.

Great job Sofi.

Congrats Sofi:)

Hello all,

I recently posted that the nurse would email me if I was invited back for January which would mean I'm SVR 12. Just got the email, I am SVR 12!!!! Oh happy day! Good luck to everyone still waiting!!!!

For the one who asked:

8 weeks sofosbuvir/ledipasvir in one pill plus ribavirin

initial viral load 9 million  and now SVR 12!

That is great Sofi congratulations...

Hi Matt, some of us were on a 8 week study with/without Ribivarin and the others were on a 12 week without the Ribavarin in the phase lll study.

Hi Matt , I think most of us have what combo each of us is on and the length of time at the bottom of each of our posts.

Congrats Socal & Sofi and the rest of you Gilead Ion-3 trials members

You guys rock, to have great results in such a short periods is a real change in the world of HCV future treatment options.

I was looking back at your Ion-3 members group and can remember who took what combinations and for how long?

Can anyone of you breakout the group Ion3 trial members by combos and weeks.

Matt

Hey SoCal, 

Congratulations!!! I am so happy for you. SVR12 is considered a cure even though they do test again at 24 weeks. You must be so relieved. You are the first in our ION3 group here to report back on SVR12. That is such wonderful news. Also good to know that they have not heard of any relapses.

Hey Sofi, I can relate to you asking them to email you rather than call if they want  you only to return in 3 months. I actually asked what they plan to say if all is ok when they call because I too  will feel panic when that call comes in.

Best of luck to the rest of you on getting SVR12.

Living proof that 8 weeks will work on some people!! :)

This is such great news, Socal and Sofie!!!!Wonderful for you and helps all of us feel hopeful and elated!

Excellent SVR12 result, Socal, congrats to you!  Great news, looks good to me! 

Hey Socal,

That is great news. Great job in hanging in there. SVR 12 is the news we all want to hear.

As far as everyone else, let's keep the good news coming. 

Take care

Sofi my nurse gave me an appt for min Jan as I said at time of my draw, she did say something about they would than ask me to participate in another study perhaps and that it would be at another location. She wasnt real clear about that she more just mentioned it. She also said that they havent had anyone relapse yet as well. I have heard 12 weeks considered cured and others have said 6 months. It will be my last visit in Jan there I think she told me as well.

Hi Rick,

Congrats on your SVR12. Time to celebrate. Cheers.

Socal! That is amazing! SVR12 is considered cured! I had my 12 week post EOT blood draw this past Thursday. My nurse said if still UND, the lab would send her a letter telling her to invite me back for a 24 week draw. She said she would only call if they wanted me back in immediately which would be bad news. I sent her an email today asking if she would email me if I am invited back for 24 weeks since a phone call would make me panic. Best of luck to the rest of us. I will post when I know.

Sofi

Congragulations to everyone on their SVR!!!

Hey All. So last week I went to both the trial study doctor and also my own private doctor for I guess it is a 12 week blood draw now at this point. Trial study drew blood and gave me an appt of mid Jan.

As far as my own doctor I did get a call yesterday from him and he told me that the blood results came back and I tested negative for HepC virus. So pretty excited with the good news and thought I would pass it along. 12 week eot and looks like I have reached svr12.

Wish you all the best as well things are looking very good for us with this medication.

Congrats Socal & Sofi ...had 4 week draw today.

Sofi, trial nurse basically stated the same-after the 12 week draw, if UND I will be back in 24, if not, no need to show up.  With that, guess it is not really blinded-invite for 24wk will be best news ever - kind of like being invited to the greatest event of your life:)

-- Edited by Karen on Tuesday 29th of October 2013 10:20:03 PM

-- Edited by Karen on Tuesday 29th of October 2013 10:20:54 PM

That's going to be a great holiday gift for all of you! I'm keeping my fingers crossed for everyone!! Good luck everybody! 

Hi Ckncali, yes I just went this past week to my private doctor for blood test, however I have not gotten the results yet. Next week I go to the trial doctor for a blood draw as well. Fingers crossed. I am hoping for the best for everyone as well. I still do my weekly searches on internet for more information on previous results with some of the earlier trials and am find less encourging results to be honest. But it is hard to determine exactly which trial some of these results they are stating in the articles thou the subject matter is with Sofosubvir. I know there have been many studys with Sofosubvir and to be hones I am not see Ledpasvir included in these articles. I would think there should be more information out on the earlier phase ll stdy by now,

Anyhow Good Luck To All

Hi Everyone,

I want to wish all of you good luck on your 12 week EOT which is probably coming up for a few of us like Sofie, Socal, and Rose. My 12 week EOT is late next week and I am feeling nervous about it too. I was told by my doctor that if I am still UND at 12 weeks then they consider that a cure.

I had my own VL test done at 4 and 9 weeks after EOT and both were UND.

Has anyone else had their own VL test done? 

Sofie, I am so glad to hear you are feeling much better. 

Socal, I hope you are improving too.

Rose, best of luck on your 12 week test.

RH, Misfis, Lil eddie, Karen and all the rest, I hope you all have UND results on your upcoming 12 week test.

Hi Ckncali...(I had my own VL test done at 4 and 9 weeks after EOT and both were UND). Thanks for sharing the great news..

My trial nurse also shared that 12 weeks UND is considered cured...All the best to everyone on their 12 week test...

My 4 week is Oct 29th / 12 week Dec 24th and I will hopefully join you all as UND/Cured right before the Holidays!!!  That will be a really nice gift for all of us and a fabulous way to start the new year:)

-- Edited by Karen on Sunday 20th of October 2013 08:54:19 PM

-- Edited by Karen on Sunday 20th of October 2013 08:54:51 PM

Hi all,

I go back on the 24th for my 12 week post-EOT blood draw.  My legs still have tenderness, especially around the joints, but it is not at all like it was. I moved last week. I spent days packing and lifting heavy things. This past Monday, I walked all over campus putting up fliers for an event then had two three hour classes back to back then came home and unpacked around six boxes of books and filled up my bookshelves.  I say all this because I couldn't have done that two weeks ago and definitely not two months ago. I started graduate school at the end of August and was like a zombie.  I thought I was going to have to drop out because of my health but I somehow pushed through. Back then, I couldn't even go out at night because I had zero energy and was afraid to drive-- this was post EOT.  But finally, I am better. Much better.

I am still hyper aware of how I feel, especially on long days but I tell myself that I didn't fall down and pass out while on the meds so I definitely won't now that I am off. Or if my left shoulder aches (probably from moving) I have to tell myself that liver pain is in the right shoulder and to stop worrying. But those days are less and less now.  Oh, so yeah my legs may have tenderness at times but all the growths and bumps and bruises are gone. The inactivity due to fatigue and pain made me gain weight but I have been walking and I am going to start trying to run again soon.

I am mentally better now, too. The meds kicked my butt and seemed to really kick mine harder than most and I was really worried that I would never be ok again. But now, I have hope and most days I feel like me again.

I still have resentments around the drugs and how hard they took me down. My best friend said that I wasn't me all those weeks and asked me how I was coping now. I don't know. I feel like I suffered more than was due and I am not sure how let go of that. I'm a writer so I am trying to use that to heal emotionally. Maybe an SVR 24 will help.

Good luck all.

Think Positive everyone !! We are all going to beat this thing and as I told Karen we were all on this for a while so it will take a while to get this out of our system and I am feeling tired and a bit lost because my routine has been changed. lol    But congrats to all of you !   I smell a good year for us.

Hi all,  good to hear the good news from everyone so far.  I had my four week eot blood draw on Sept 18th.  Haven't heard anything from anyone yet.  My 12 week will be on November 13th.   If I remember correctly, I'm then supposed to come down the following week for results, but my memory maybe a little off on that one.  Wish us all good luck!

They schedule mine as well at the time of my visits, told me I only have to worry if they call be in for a re-test. I go back in for a blood draw next week I dont even know how long it has been anymore to be honest. I also have an appt with my private Dr for a blood draw next week which I will be getting the results for that one. Am feeling a little worried to be honest my health just doesnt seem to be as good as it was there for awhile am feeling really tired again and some other issues that I was experiencing seem to be coming back or at least it seems that way. Think I am feeling like you are RH maybe it is all in my head.

Well the good news is there hasnt been any bad news yet within this group hope we all stay healthy.

That is great news. They scheduled my 12 week appointment at my 4 week blood draw though. I guess it depends on your study place. At any rate we have two more hurdles to jump.

I have been feeling a little drained in the afternoons and am starting to get super sensitive to any funny feelings. This part is worse than the actual treatment for me. I hope it's all mental but this started right after my 4 week blood draw.

I have an appointment coming up with my private Dr. in a few weeks. It will be SVR 10 or you know what.

Take Care  

Great news...

Clinic called to schedule week 12 EOT. I guess that means my week 4 EOT results were UD. Praying and waiting!

Good luck to all!!

Great job Sofi,Socal, and CK. I'm glad all you guys are coming around. 

Take care

Great to hear this, Ckncali, congratulations to you!  So good to hear how well you`re doing now, what a difference a few weeks make!  

Wishing you all the best of luck with your 12 week vl test at the end of the month...although it sounds very much like you`ve got this done and dusted! 

Hoping for successful outcomes for you all, it`s great to see such a lovely supportive group!

Fabulous news Ckncali...So great to hear another success!!!

Thank you Matt, Tig and Rose for the good wishes. 

Good luck to you Rose on your 12 week draw in November and congrats on the good news on your week 4. 

Socal and Sofi, That  RIBA can keep working on you for a while. My doc told me to give it six months to a year to get over the meds. I think all the hiking I did really helped me to get it out of my system and start feeling good. I hope both of you are feeling really good soon.

RH, Reg and lil Eddie, best of luck to all you guys on your upcoming milestones.

Ckncali,

That is such fantastic news!  I'm so happy to hear you have your health back and your tests results are good.  I'm looking forward to hearing more and more post just like this one. 

Thanks for sharing! 

Ckncali

Great news about your test and all the health issues resolving so quickly

Matt

Ckncali, congratulations on your EOT too! The news is great for so many lately! I wish you continued health and good luck in the future! 

Hi Everyone,

I wanted to check in and report how I am doing. At almost 4 weeks after EOT I had a VL test done from my hep dr and was still UND. I also had my 4 week after EOT done and will have my 12 week after EOT done late October with the trial folks.

I took a three week RV trip with my husband to the Sierras and was able to bike ride and hike. I was breathing pretty hard at the high altitude but so was my husband and we were up as high as 10,000 feet and we live at sea level. I am now able to wear my contacts again so my eyes are getting better.  I was unable to wear my contacts during the entire 8 week trial and also for about six weeks after the trial. 

I now feel much better than before starting the trial and am noticing that past health issues like insomnia, night sweats, headaches, fatigue, lethargy, coldness, heart palpitations, and more are no longer happening to me. These are all health issues I had prior to doing the trial and I am now no longer experiencing them. 

I feel very confident that the virus is gone.

I wish you all the best.

I was experiencing a lot of itchy, bumpy scalp problems and found 2-3 day shampooing with the Head and Shoulders "Refresh" brand shampoo, along with using the "Scalpacin" OTC scalp solution as needed really helped. It's almost gone now and really not bothering me. Good luck!

Hey Sofi... I was reading your post didnt see what i should be looking for if anything that pertained to us on our study. What did you see in that?

So a little update on myself. I am still having this itchy scalp thing going on and am still getting these scabby type thing on scalp with alot of hair loss as well. So i started looking up some info on the Riba and found that it can take up to 6 months to clear from your body and that you can still have adverse effects from it for some time, maybe I will still have some hair left come six months.

Have next appt in about 2 weeks i think as well as another blood draw from my private doctor around the same time which i will get results from within a week from the draw. Will be keeping fingers crossed and a prayer or two as well.

Hope you all are doing better

Also, here is this...

read until the end

http://www.hepatitiscnewdrugresearch.com/sofosbuvir-gs-7977ledipasvir-gs-5885.html

It's been three weeks since my one month post treatment blood draw. No phone call so that is good. I am better and so are my legs but still not back to normal. I tire easily and still get aches.  But hopefully, eventually, I will be back to normal. It's like the medicine aged me.

Sofi

PS the fact that Gilead is recruiting people with advance liver disease and post transplant for these same drugs leads me to believe that the trials are going well.

http://clinicaltrials.gov/ct2/show/NCT01938430

Thanks Randy.  I will look for November then.

Cheers

Do

Hi Do

 They are on Gileads website if you want to listen to them. The only thing that was said pertaining to what I was listening for is that the treatment will be for 8 weeks for certain patients. I was hoping for a little more info than that but this was an investor conference, not a liver conference. They are having the AASLD(liver conference ) the first week of November and that should have all the info we are looking for.

Take  care

RH wrote:

---

Gilead,Abbvie,etc will be presenting info at two health care conferences this week.

Maybe they'll let us know how the trials are going.

 

---

 Hi,

Do you know if we will get the "minutes" (no idea of the English word for it) of the talks on the net ?

Thanks

Do

I just had my four week post treatment blood draw today - hoping for the best but curious to know where you read about the SVR12 relapse rates.

There is another thread that has been started about another Gilead Trial starting using the following drugs:

GS-7977 =  Sofosbuvir - Nucleoside Polymerase Inhibitor

GS-5885 =  Ledipasvir  - NS5A  Inhibitor

Along with one of these drugs:

GS- 9669 = Non-Nucleoside Polymerase

GS-9451 = Protease Inhibitor

What I read into that is that the Sofobuvir / Ledipasvir treatments we just went through are not as effective as they thought. I am guessing that that is way we have not seen the SVR12's from the Lonestar 2 treatment arm. Socialbeatnik also stated that some are relapsing after the two drug treatment.

God, I hope I just didn't waste my treatment naïve chance on a treatment that does not work!