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Post Info TOPIC: ION-3 trial


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RE: ION-3 trial
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Looking forward to getting my strength back, jumping up-and-down and dancing my days away...3 more weeks..Oh Lord!



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014



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Hello ya all, Just checking in see a few of ya are doing better and some are now finished. I suppose all participants would be finished with the meds now, so it is wait and see for everybody.

My last visit was Aug 30th for a blood draw which was my first since after i finished treatment. I guess everything went well since i have not heard back from them as of yet anyhow. The nurse did tell me that they did have 8 participants for the earlier phase 2 study and that all seemed to have been doing well with 2 that had relapsed of the 8. So i just keep my fingers crossed.

I am feeling much better and seem to have all my strength back, but for somereason still have some scalp itching though very minor. I just got back from a trip to Virginia where i attended a music festival for 4 days and didnt have any problems being on my feet about 12 hours a day dancing and jumping up and down. So i def have my strength back to normal.

So like everybody else waiting to hear good news for all as well as for myself......take care



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Genotype 1a Chronic Hepatitis C   Stage 2 Grade 3     Baseline  8810000  Alt 118   Ast 89 

HR


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That is great news Rose. SVR 4 is under your belt and you are well on your way. I love good news!!!

Take care



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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Hi all, 

I thought I would share goodnews. Today I got a phone call from my clinical nurse. She said, that my 4 week (blood work) results came in and that my liver function is now better then it was while on treatment, then she said the next blood drawl wouldn't be until  November!!    Mind you this past Friday was when I had the 4wk drawl.   She was very excited to share the good news and is very optimistic. 

I hope everyone is well, I've been out of contact due to a family loss.  I'm at peace now so I'm sure I will stop in more often.  Stay positive and keep posting.

Rose



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Currently in the ION-3 with Riba 8 wks,  started Jun 13- Baseline VL 1.8m- AST-40 ALT-46. Wk1 - UND,  Wk2 - UND, 

HR


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Thanks Matt

Those of us on the trial without RIBA were blessed.

The Sof/Led combo is very user friendly.

The health care conferences are today and tomorrow and both are in New York.

Take Care



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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Hey Randy 

Congrats on finishing your Ion-3 trial. It's good to hear that the treatment was easy to endure. If all goes as expected your trial combo Meds.(Sofosbuvir & Ledipasvir) will be one of the most anticipated HCV treatments that the HCV community will see. With only one daily pill and no Ribavirin to mess with your moods it promises to be a welcome change in treatment.

Hoping all go's well in the comings weeks as you move forward with your EOT weeks.

BYW Randy where are these latest medical conference being held at?

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 

HR


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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.

 



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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Hi Randy,

Glad to hear you had a fairly easy ride, and good luck for the SVR.

I'm glad you mentioned Benitec. I was wondering whether to do a post on it, so I now will, in HCV News.

Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm

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 Hi Everyone

I've been off the meds 4 days now. I was wondering what it was going to be like after treatment.

At this point I feel great and maybe a little more energy. (note: I'm not posting to this to upset anyone on SOC) I just want people to know the steps and everything that goes on with the treatment I was on.

 I do not see how they could make this treatment any easier. I do believe it will be for either 8 weeks or 12 weeks depending on how quickly a person goes UND.

They are also getting close with the GS-5816 which takes care of multiple genotypes.

What would be even better than that is this company called Benitec out of Australia is working on a one shot cures all. I haven't heard anything about in a while but they were trying to do a clinical trial at Duke University I believe. It was somewhere in the states. Wouldn't it be nice for the people who have not reached SVR to just go to the hospital and get a shot and be done with it? Who knows if this will actually happen but it sounds like they are working on it.

Congratulations Matt..I read your posts a lot before treatment. You should be the perfect fit for moderator.

Take Care

 



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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Hi Everyone,

Good luck to RH, Misfis, Lil Eddie and anyone else finishing up the 12 week arm. RH and Socal mentioned the exhaustion when swimming. I also experienced getting out of breath very quickly when I went into the ocean recently. I did not stay in long because I felt so out of breath.

I am three weeks past EOT. I expected to feel really great after stopping the meds and I do feel better overall than when on the meds but not as well as I expected. Prior to the trial I wore soft contact lenses daily with no problems. During the trial my eyes got so dry I could no longer wear my contacts. My eyes now have gotten even more dry, they hurt and ache all the time and I absolutely cannot wear my contacts any more. I also feel that my vision has deteriorated. I did go to have my eyes checked about the fifth week of the trial and was told they did not see any damage at that time. They told me the dryness can make the vision blurry and not as clear. I am concerned because my eye symptoms are getting worse rather than improving. My eyes hurt, ache, feel gritty and extremely dry. I did not have this problem prior to the trial.

Have any of you on this trial noticed you are more sensitive to certain foods and drinks? or that you seem to have developed a type of food allergic reaction since being on this trial?

Prior to the trial on occasion I would have a food allergic reaction such that after eating or drinking something I would become ill where my blood pressure drops and I feel very tired and must lie down. This only happened on rare occasions. Since the trial it is happening frequently, sometimes daily. Food, spices and drinks that I previously did not react to, I am now reacting to and feeling sick. Have any of you experienced anything like this?

I had severe insomnia while on the trial and I am now starting to sleep better so that has definitely improved.  I also have more energy.

Sofi and Socal, How are you two doing? Have your symptoms improved yet? 

My eight week VL was UND As it has been since week 1. Go in for my week 4 after EOT next week.

Take care and good luck to all.



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 

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Hi Sofi

Hang in there, it will all be worth it in the end.

Take care



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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Hi all, I have good days and bad days. The immunological response that is affecting my legs takes 6-8 weeks to clear up completely once the "offending" medicine which caused it has been stopped. My legs are better but still have pain and swelling especially on the days I work, and this condition causes fatigue and dizziness, too. Some days, I really wish I had never taken the meds.



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Genotype 1a- Stage One- Diagnosed 2001- currently on 8 weeks Sofosbuvir/Ledipasvir with Ribavirin (Ion 3 Trial)

HR


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Hey Everyone,

Im still feeling good over here. Five more days of meds. It seems that all the people on 12 weeks are about to hit the finish line.

Is everyone that was on the RIBA coming around to their same old self? I hope so because I know some of you went through hell.

take care everyone and have a good weekend



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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Hey Tig56

I know how you feel, but it's ironic because the the forum members that contribute on this very thread are the ones that are benefiting from that Gilead choice. So it is'nt all bad, some will still benefit and achieve their SVR.

 I also thought that when Sofosbuvir receives FDA approval won't BMS and other Big Pharma have the ability to continue trials like Solosbuvir and daclatasvir to received its own FDA approval. Then Gilead might have some real competition. 

The fact remains the Gilead choice to discontinued progress of the combo that proved 100% effective revealed the perverted greed that man has achieved in the name of medicine.

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 

Tig


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It's nice to read the stories from those on these study medications. I continue to be amazed that compared to those of us that either are on or have gone through double or triple therapy many (most) in this group have escaped (thankfully) the horrors of the side effects! As I lay here quite sick, itching, exhausted and feeling basically like total crap, I find myself being sadly envious of you fortunate enough to be on these newer drugs. You are quite lucky, and after reading your comments, I believe you know that. After reading the reports about companies like Gilead dragging their feet and refusing to cooperate when they could have just saddens me! Had the almighty stock price not been the most important goal instead of quickly providing the short duration, highly successful, relatively side effect free medications, they could have had them on the market by now, literally hundreds of thousands of people's lives affected by HCV and negatively affected by current therapies would be in a far better place. Instead we witness ongoing studies, phase I - II & III (thankfully) of new choices of medications that will hopefully bring us to a level of success we probably had every opportunity of achieving years ago. Forgive my irritation and bitterness, I pray hard everyday that we all reach SVR and do it soon! But as I experience one more unpleasant side effect, I have to wonder and am fearful that should an opportunity to double their stock prices come along again, these late phase manufacturers will once more choose a financial windfall over the potential life of even one more HCV patient worldwide. Please remember that we can be one of our own best advocates in the fight to destroy this disease... Be vocal and be vigilant! Thanks for listening.



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

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Had my 10 week draw done yesterday. Week 8 draw was still UD. They finally found my week 1 draw results. Looks like I was less than 25 after 7 days. Nurse said that was outstanding.

 

I was told that as long as they call you back after treatment to test you are still UD. She said that if they call to retest again right after your scheduled test and then don't call you back you have relapsed. Hopefully that won't happen to anyone.

 

 



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Hi everyone!

This coming Wednesday is my last day of treatment.  Been counting down since last week.  Last time I was there, my research nurse told me (without my asking) that both the participants and the research medical staff would be blinded to the viral load result after EOT for the purposes of keeping people coming back, and not dropping out.  This is consistent with what RH said his people told him.  Good to know there is some consistency for the reasoning, although we're not all fond of that.  I know I'm not!   Socal, your idea about having your primary doctor give you results is something to consider.

So carry on!  I'm going to ask the doc next Tuesday (have to be seen a day before EOT because of his schedule.  The man is all over the bigger metropolitan areas in my geographical region) about whether being asked to come back a week after a blood draw would be an indication of detected viral load.



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genotype 1A,  baseline VL 4,000,000.  ION 3 --12 week sofos/ledis. UND at 4 week.  Probably contracted in early 70's. Diagnosed in Oct 2009.  Stage 1 to 2.  Treatment May to Aug 21st, 2013.  November 19th, 2013-- 12 SVR!!



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Hi everyone, I've been keeping up with the blog and am so happy to read that everyone has successfully gotten to this phase of treatment. I finished up meds last Thurs :) what a happy day that was.  All and all the treatment wasn't bad for me, I can count on one hand the days that I was overly tired or experienced  mussel soreness.  Socal, I like your thought of seeing the doc for personal follow up, I think I'll do same thing. It just might help him make decisions for other patients, when this gets rolled out as a treatment option plus, knowing that HCV has cleared is a bonus. 

Looking forward to reading the next results. SVR4!!  Good luck everyone



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Currently in the ION-3 with Riba 8 wks,  started Jun 13- Baseline VL 1.8m- AST-40 ALT-46. Wk1 - UND,  Wk2 - UND, 



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Hello RH glad you are about done. I had to laugh at the swimming i dont know if i mentioned it but on Vegas trip a cpl weeks back i found out the same thing. I jump into the deep end of the pool and had a hard time just making it back to the side to get out.

I am doing well i have to be back to at least 75% of my strength if not more. Actually did some work under the hood of my car had to replace the clutch to the fan my jeep was heating up. But i got thru doing it with no problem. I go to my private doctor tomorrow and will be seeing what he recommends at this point regarding doing his own blood draw to take a look at where i stand. Maybe another month and than have him see if i am still UND.

Everybody hang in there and hoping the best for everyone.



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Genotype 1a Chronic Hepatitis C   Stage 2 Grade 3     Baseline  8810000  Alt 118   Ast 89 

HR


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Hey Guys

How is everyone doing? I've got little over a week to go on the meds. The only noticeable side effect that I have is that I don't have the stamina I had before treatment. I did my 10th week blood draw last Wednesday. After that we drove down to the beach where I went for a swim. Closest I've ever come to drowning in my life and I can swim fairly well. I was between the sand bars and ran out of air. I would not advise swimming in the ocean after you give blood and are on the meds.( tip of the day) Other than that, this trial has been really easy for me. Take care and 100% SVR for everyone 



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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Congrats Ckncali and Socal!

I am still not sleeping well, either. I hope we all rapidly improve and feel better than ever. At work, if I am running around shelving books I get winded. They are nice and brought up a stool that I can sit on if need be. I did a full 25 minute walk with some arm exercises and knee bends today but it feels like I ran a few miles with how tired I am now. I only gained a few pounds on treatment but my muscles turned into fat. I have the sudden heat ups, too. But I know what you mean about the return of the life force. My ankle still swells up and my knees ache a little but it is still a huge improvement. Socal, how is the itching? I stopped the Benedryl at EOT and my itching worsened including scalp but now it is much less.

Take care all. Including RH, Misfis, Lil Eddie, Rose and all of us on the trial, or heck, all of us on the forum.



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Genotype 1a- Stage One- Diagnosed 2001- currently on 8 weeks Sofosbuvir/Ledipasvir with Ribavirin (Ion 3 Trial)



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Hi Tig,

Thank you so much for your Congratulations. I greatly appreciate it.

I see on another thread that you have an important blood draw coming up. I wish you the best on that big day and hope your symptoms have been more manageable.

Take Care



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 



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Hi Socal,

Thanks for the reply. Glad you got to go to a ball game. I just wanted to do too many things right after finishing treatment and needed to slow it down a bit. Today has really been a great day for me, I felt so good, the best since starting the trial. This is my third day after  EOT. The anxiety is completely gone now, the shortness of breath almost gone, my energy level and ability to do things has increased dramatically. My eyes are feeling better, still a bit dry but much better than while on the trial. I still have some other issues but overall things are looking good. You should definitely get your RBCs and HMG and the rest of the blood counts done. Are you feeling your energy levels picking up more now? You are almost a week after EOT so hope you get back to normal soon.

When we go for our week 4 after EOT they also will do the same blood tests they did during the trial and we are allowed to see those results. We only cannot see the VL results. So be sure and ask your trial doc to give you copies of the other blood tests done. I asked that they mail them to me and they agreed to do so.

At my EOT they took about 14 vials of blood, more than usual. I wonder what else they are testing. I am going to ask if I can see all the results from the EOT.

Take Care



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GT1A, Currently on 8 weeks Sof/Led with RIBA (ION3) 



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Congrats Ckncali.. It does feel good to finish with the meds, i felt like i had jumped a big hurdle. Spealing on ball games i did go to the Dodger/Yankee game the other night. I was pretty worried i forgot about all the stairs i was gonna have to climb but i made it through the night but i did have to stop and rest making from parking lot into the stadium. I will ask my doctor when i see him in about a week what he thinks about checking my red blood cell count to see where i stand on the anemia i9ssue i had.



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Genotype 1a Chronic Hepatitis C   Stage 2 Grade 3     Baseline  8810000  Alt 118   Ast 89 

Tig


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Congratulations! It must be a fabulous time to be you!! SVR baby, SVR!!



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Tig

63 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 5+ years!

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Hi Everyone,

My last morning meds were on Friday, so I am officially finished. First thing I noticed was less and less anxiety. That is a great relief. I went on a social outdoor barbeque outing yesterday for several hours and it did really exhaust me but my husband said there was no way I could have gone for that long a time in the sun and heat when i was on the meds. Also made plans to go to the padres game today but had to cancel and sell our tickets, I was just too tired from yesterday. The headaches are getting less today than yesterday. The insomnia has not improved yet. Getting back pain from really tight muscles which hopefully will improve. Had problems with ankles and feet on the meds and still noticing that. Feel a nice energy life force buzz running through me that came on a day after stopping the meds that felt good. Mouth sores left some scars but looks like they will Heal. Fever and chills are better but still getting the sudden heat ups. 

Sofi, So glad you seem to be recovering so well. So many symptoms getting better so quickly  really shows that the meds were responsible. Still can't believe what a doofus your trial folks have been. 

Socal, I think you are smart to ease back into normal routines. I hope your scalp clears up soon and you get your energy levels back.

For the rest of you good luck on the rest of your trial and want everyone to be SVR forever.

Oh, I did get my six week VL and still UND.

Take Care



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Sofi Glad to hear that you seem to be doing much better and your spirits are up. I think i am starting to feel better as well, thou i still havent been pushing it much. I still have the scalp thing going on which created the itchy thing for me. However my strengh does seem to be getting stronger i think. They told me it might take a month to get back to normal and it has only been a few days. All in All i'm not stressed and seemk to be more concerned about staying UND at this point.

Cinnamon Girl thanks for putting out the good vibes our way...good luck with everybody hoping we all beat this thing. 



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Genotype 1a Chronic Hepatitis C   Stage 2 Grade 3     Baseline  8810000  Alt 118   Ast 89 



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What a feeling this must be...Congratulations!



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014



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So Happy to hear you two are done Sofi and Socal. You both deserve this so take some time to heal the body and mind. And Please send a note so we know how you are . Good luck!!



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Geno Type 1a stage 4 cirrhosis EOT 52 weeks SVR !!



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Hi Sofi, that`s great news, congrats on getting to the end, you`ve had a rough time of it!  Good to hear that growth in your leg has gone, and it does strongly suggest that it was caused by the drugs then, despite what your trial nurse said.

Best of luck with your recovery, slow and steady and you`ll get there!

Congrats also to Socal for finishing too!  Onwards and upwards, very best of luck to you all, what a nice supportive group you are!  smile

PS. - Sofi, you asked about the time zone we use here, well the forum is set for Europe/London BST (+1 hr for British Summer Time daylight saving) as we`re a UK based group, but you have the option to change the time zone for your posts, just look in your Profile details, under `Settings`.

 



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Jill 

(70 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Update--

It's Saturday afternoon and my last dose was Wednesday morning. My emotions are calmer. My mind is much clearer. My legs are healing fast! The growth on my right calf seems to be gone--I mean if it's there, it is too small to feel! The bruises have changed colors and are fading. My pain is pretty much gone. I went for an 18 minute walk today. I slow jogged past three houses (so for 30 seconds and it was wonderful, I teared up with joy) but made myself stop so I didn't injure myself.  So no pain, which is super but now I have no energy and feel weak. But that's ok. My body will replenish whatever the meds took. My mind is back and I am determined to get well. Also, my primary doc told me to walk. He said no running for a month but to build up with walking. I probably went too fast today. I am going to walk again tomorrow. I go back to work Monday.

 

I think this proves that it was all from the meds. I mean I stopped the meds on Wednesday and my body is rapidly healing.

 

I hope all are doing well. Socal, I hope you are recovering, too!

 



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Genotype 1a- Stage One- Diagnosed 2001- currently on 8 weeks Sofosbuvir/Ledipasvir with Ribavirin (Ion 3 Trial)

HR


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Great job Sofi!!!

 



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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I don't know what time zone this forum is set to...my posts about having to dose in the a.m. was made Tuesday evening, and it's now Wednesday afternoon. I am EOT as well. The nurse told me that they have a file documenting my adverse side effects and that if it clears up now that I am off then it will be attributed to the drugs. She said the study doc does think it is a systemic reaction to the meds(my primary doc sent them my tests results--yay for my primary doc!).

 I just want to be hopeful about us reaching SVR24. I already distrust huge corporations and know profit is their number one agenda and think there could be all sorts of motives at play that have nothing to do with the results (like not wanting people to hold off on treatment until ledispavir is FDA approved). I need to be hopeful as I heal...it will help me heal. My life went away these 8 weeks. I have been super miserable and depressed and mostly in bed with my legs elevated. I am usually a vivacious person. I want my life back.

Good luck Socal!! Let's heal now!!! I am ready! I need to be able to work soon and I really can't wait to run in the sun and feel the air whip through my lungs.  And good luck to all.



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Great job Socal.. I heard that exact same thing about there being "better " drugs on the way. I don't know if they were talking about the GS-5816 or about a different company. At any rate I hope the treatment we are doing does the trick.



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ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

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Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14



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EOT... Hooray...Went to my apt this morning and turned in remainder of the drugs. I find it funny however that I end up leaving with more questions than I had going in to the office or answers to the ones that I asked.

Here was a question I asked...So now I am able to take any prescribed medicines that my private doctor may want to give me? The answer was no I cant, that I still need to check with them first. They wouldn't tell me why, just said any medications he may want to give me wouldn't have any effect against the problems due to the ribavirin.

They didn't seem to keen on the idea of me telling them that I was going to have my doctor do a blood draw in maybe 2 months to check on the status of the Hep C and my hemoglobin issue.

Talk with doctor he told me that so far the study has been going very well and that Gilead has a very good product, than he added that there actually are some better products coming out that are better than the Sofosbuvir. Told me not to worry that is the Hep C  does reappear that they probably would be able to put me on another med to fight it. Of Course no specifics on what any of that conversation meant.

They did tell me that I should be feeling back to normal within a month with all symptoms gone and my hair would grow back and we will see you back in a month from now.;

So good luck to everybody, wish you all the best and let hope we all stay undetected, at least for a few years... 



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Ckncali wrote:

Hi All,

They briefly speak of the ongoing ION3 and remark that the addition of Ledispavir increased the effectiveness of Sof and Riba.

There is a chart which has at the bottom showing SVR12 for Sof/Led and Riba for 12 weeks. I am not sure if that chart means 100% SVR 12 or not. Can someone else interpret that? It is in a dark blue color at bottom of one of the charts. Is that new info?

 

In reading the chart I get from it that the SVR8 and SVR 12 results have not been published. I call both the TX liver institute (where the study took place) and GILD. I was told by the TX liver Institute what they could not tell me anything (which I assumed anyway). GILD called me back and told me they didn't know when the results would be published.

It's starting to sound like they have a reason to keep the data a secret. Hopefully it's all good!!!! 



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Hi All,

This came out this morning:

http://hepatitiscnewdrugs.blogspot.com/

 

They briefly speak of the ongoing ION3 and remark that the addition of Ledispavir increased the effectiveness of Sof and Riba.

There is a chart which has at the bottom showing SVR12 for Sof/Led and Riba for 12 weeks. I am not sure if that chart means 100% SVR 12 or not. Can someone else interpret that? It is in a dark blue color at bottom of one of the charts. Is that new info?

Maybe some of you can make more sense out of what this article means. 

Socal, Congrats on being done. Please let us know if you start feeling any better or not.

Sofi, I also have had heart issues most likely from all the anxiety but I have a history of heart arrythmias, so it has been very concerning because I don't want to get my heart all in an uproar again. I just really hope there is no permanent damage to vital organs like the heart from these drugs. So glad your last day is tomorrow. I also was told to take the meds the day I go in for my EOT which I am happy to do, maybe one more day of Sof/Led will make the difference, it does make it so we go eight weeks and one day. I am one day behind you, finish on Friday.

Eddie, Congrats on week 6 UND. Always good to hear that.

Hi Misfis, Hope things are going well for you too. You are on 12 weeks correct?



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Thanks for that l'l Eddie. I remember now about it Being called lonestar. Thanks for the info about the search. it makes me wonder, however, about what happens between 12 and 24 weeks for SVR....



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genotype 1A,  baseline VL 4,000,000.  ION 3 --12 week sofos/ledis. UND at 4 week.  Probably contracted in early 70's. Diagnosed in Oct 2009.  Stage 1 to 2.  Treatment May to Aug 21st, 2013.  November 19th, 2013-- 12 SVR!!



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Misfis wrote:

Hey L'l eddie et all,  It would seem that this forum would be a great place to find out if anyone from the ION 1 or ION 2 trials have any information about SVR at 12 or 24 weeks EOT.  I had typed in ION 2 and ION 1 into the search, but all that came up is ION 3 comments. 


 The trial was called Lonestar. There was no ION-1 or ION-2. If you search on the internet use "Lonestar" and "SVR" in your search items. The study was done in TX. I ws going to try to call the clinic that did the study and see if they will comment.



-- Edited by Lil Eddie on Wednesday 31st of July 2013 04:29:27 PM

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sofi moore wrote:

http://hepcfriends.activeboard.com/t52112013/new-studytreatment-no-shots/

 

This whole thread is the person's journey. If the link doesn't work, look under clinical trial participants then scroll down to "study treatment no shots."  I am so happy for this person and not just because it gives me hope, but because now this person may be well and live a wonderful life.


 Thank you so much Sophie, for taking the time to send this link.  It gives us all hope, especially the ones of us doing the sofos/ledispavir with the riba.   I wonder and hope that he is still SVR.  I noticed the last post was in June.   The next four to six months will be very revealing for all of us.   It's so good to have a group of involved people going through the same thing.  This forum is invaluable!!!



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genotype 1A,  baseline VL 4,000,000.  ION 3 --12 week sofos/ledis. UND at 4 week.  Probably contracted in early 70's. Diagnosed in Oct 2009.  Stage 1 to 2.  Treatment May to Aug 21st, 2013.  November 19th, 2013-- 12 SVR!!



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http://hepcfriends.activeboard.com/t52112013/new-studytreatment-no-shots/

 

This whole thread is the person's journey. If the link doesn't work, look under clinical trial participants then scroll down to "study treatment no shots."  I am so happy for this person and not just because it gives me hope, but because now this person may be well and live a wonderful life.



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Hey L'l eddie et all,  It would seem that this forum would be a great place to find out if anyone from the ION 1 or ION 2 trials have any information about SVR at 12 or 24 weeks EOT.  I had typed in ION 2 and ION 1 into the search, but all that came up is ION 3 comments.  I also worry about why Gilead is not posting results until the next (hopefully) quarterly reports in January for shareholder and profit reasons, and I have also worried about things only going well while on treatment, with subsequent mutations of hep c showing up down the line. 

Sophie, I saw in your post that you saw someone from a previous ION trial who posted about being SVR at week either 8 or 12.  Wish I could find that.  I know that trying to figure out the unfigure-outable can be frustrating, but also don't want to ignore information that might be out there!

I welcome any valid information that anyone might have out there!



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genotype 1A,  baseline VL 4,000,000.  ION 3 --12 week sofos/ledis. UND at 4 week.  Probably contracted in early 70's. Diagnosed in Oct 2009.  Stage 1 to 2.  Treatment May to Aug 21st, 2013.  November 19th, 2013-- 12 SVR!!



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socalbeatnik wrote:

Thanks Lil Eddie, However after reading it they pretty much stayed with the same report that they had previously released back in April I think it was. The phase 2 should have reached svr12 by now since they had reached 8 at least 2 months ago but no mention of new svr results did I read. Well their stock has gone up 15% in the quarter I suppose they don't want to disturb that rise their riding. 


 Well in this case no news is not always good news.

My previous GI doc was worried that without some type of immune boosting drugs that just anti virals might show UD while on treatment but would not clear the virus long term. He was concerned that the virus might mutate and come back.

 

Lets hope not.



-- Edited by Lil Eddie on Wednesday 31st of July 2013 02:39:59 PM

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I have to dose in the a.m. then I am done. My appointment is tomorrow but today makes 8 full weeks. I called and asked and yep, I have to take the a.m. dose in the morning, too. She asked if I was better. I told her yes and no and then told her what my primary doc said about my legs and lungs, her response "treatment doesn't cause that."  Ok, even though my primary doc says otherwise...even though anyone can Google my "condition" and see that hep c treatment of all varieties that have ribavirin as the common denominator has caused this exact same response in numerous patients and that any drugs resetting the immune system can cause this....whatever. I responded with "well my body is proving you wrong." And she just laughed and said she'd see me tomorrow.   On a positive note, I am almost done!!! Woohoo!!! In the past few days my heart has pounded and I could hear my pulse in my ear. Anxiety has been through the roof. But almost done. legs are a lot better but ankles and knees have a ways to go, plus the bruising and swelling isn't gone but is better (of course, I am off work and staying off my poor legs helps).

 

Socal et al, there is a posting on here from someone in the previous trial who did sofos/led without ribavirin for 12 weeks and didn't go UND until week 8 and is SVR 12.  So that's pretty amazing. Who knows why Gilead isn't posting. Maybe they have some secret agreement with interferon or something. You never know.

Sofi



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Thanks Lil Eddie, However after reading it they pretty much stayed with the same report that they had previously released back in April I think it was. The phase 2 should have reached svr12 by now since they had reached 8 at least 2 months ago but no mention of new svr results did I read. Well their stock has gone up 15% in the quarter I suppose they don't want to disturb that rise their riding. 



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Congratulations SoCal!!! I know you've been counting down the days! 

 



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genotype 1A,  baseline VL 4,000,000.  ION 3 --12 week sofos/ledis. UND at 4 week.  Probably contracted in early 70's. Diagnosed in Oct 2009.  Stage 1 to 2.  Treatment May to Aug 21st, 2013.  November 19th, 2013-- 12 SVR!!



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http://www.morningstar.com/earnings/51699043-gilead-sciences-gild-q1-2013.aspx

Link above



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On the last day of trial here, yippeeeeeee. I was curious did anybody here anything in regards to the press conference Gilead was due to have last week that someone had mentioned? Any good news?



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Week 8 all is good, Week 6 results UD. Only 4 more weeks to go. GILD stock is UP, all is good.

 

 



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Hey Ckncali!

 

It's been hell for the three of us, hasn't it? I had vertigo for a whole day last week. But I do have dizzy spells off and on. I have taken off work again--this time for 8 whole days. I had a panic attack at work last night (on top of a deep bone ache)and left early.  I won't return until the Monday after EOT. I am hoping my legs and body heal in that time as well as my mind and emotions. 

I am glad your mouth ulcers are much much better now. Those ocular migraines sound terrifying. I'm so sorry. I will keep you posted on how quick recovery is--hoping it's immediately noticeably  better. My friend who did interferon plus ribavirin for a year said that it did take a month to really feel like herself again but that once treatment ended she did instantly start feeling better and that each day got better and better.

 

Sofi



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