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ION-1 / ION-2 / ION-3 / LONESTAR / ELECTRON statuses
Hello all:
I thought that it might be helpful to all of us ION-1 / ION-2 / ION-3 / LONESTAR / ELECTRON folks to post an abbreviated synopsis of their HCV and post-treatment clinical trial statuses when they find out something definitive about their viral load, with as much info as they might be willing to share. This is or the benefit of us ION-"X" people so we can see how we are all doing, as well as for the benefit of others waiting and hoping to see whether sofosbuvir plus ledipasvir with or without ribavirin for 8, 12, or 24 weeks will comprise a viable treatment strategy.
I was going to try to start building a list of what I could harvest from this site, but decided that some people may prefer that I not do that, so, if people want to share their ION1/ION2/ION3 (and even ELECTRON and LONESTAR phase 2 studies) HCV status, they can.
I was thinking that, as much as people may be willing to share, that forum name, gender, genotype, liver Bx status prior to start of treatment, in which trial you participated, treatment regimen, whether treatment-experienced or not, whether PI-experienced or not, and since post-treatment viral load is quasi-blinded, whether you got the 24-wk followup invite or the sux2BU notification, or post-treatment private viral load test outcome, or declared cured or relapsed, would be helpful to share with the Community here and provide useful information to them. My status follows this post.
Thanx, all!
I thought that it might be helpful to all of us ION-1 / ION-2 / ION-3 / LONESTAR / ELECTRON folks to post an abbreviated synopsis of their HCV and post-treatment clinical trial statuses when they find out something definitive about their viral load, with as much info as they might be willing to share. This is or the benefit of us ION-"X" people so we can see how we are all doing, as well as for the benefit of others waiting and hoping to see whether sofosbuvir plus ledipasvir with or without ribavirin for 8, 12, or 24 weeks will comprise a viable treatment strategy.
I was going to try to start building a list of what I could harvest from this site, but decided that some people may prefer that I not do that, so, if people want to share their ION1/ION2/ION3 (and even ELECTRON and LONESTAR phase 2 studies) HCV status, they can.
I was thinking that, as much as people may be willing to share, that forum name, gender, genotype, liver Bx status prior to start of treatment, in which trial you participated, treatment regimen, whether treatment-experienced or not, whether PI-experienced or not, and since post-treatment viral load is quasi-blinded, whether you got the 24-wk followup invite or the sux2BU notification, or post-treatment private viral load test outcome, or declared cured or relapsed, would be helpful to share with the Community here and provide useful information to them. My status follows this post.
Thanx, all!
Went in for my long-term SVR registry follow-up visit today. The research coordinator told me about the ION2 SOF/LDV having been approved by FDA on Oct 10 under the trade name "harvoni". Looked up a link about it and found http://www.hepatitisc.uw.edu/page/treatment/drugs/ledipasvir-sofosbuvir. Hearing about it's approval made me think about all the folks on this site who had contributed their treatment histories and lab results to this thread. So thought I'd check in and if any of those folks still hang out here, just ask to see how everyone was doing.
In addition to the SVR registry blood samples I gave today, my friendly hepatologist also had asked me to do a liver ultrasound. It was my second since EOT. I also had my primary care physician order up some lab tests for a bunch of stuff that back in the dark days of hepC were problematic enzymes, but are not checked under the registry study. So, I'm back home from the medical appointments now, holes in both arms and a greasy stomach from the ultrasound lubricant. I'll be quite anxious for the next several days or so as I await to hear about all the results.
In any event, I hope that everyone out there is doing well. I would love to see a "check-in" of sorts just to read about how everyone is, in fact, doing post-treatment.
Take care all.
In addition to the SVR registry blood samples I gave today, my friendly hepatologist also had asked me to do a liver ultrasound. It was my second since EOT. I also had my primary care physician order up some lab tests for a bunch of stuff that back in the dark days of hepC were problematic enzymes, but are not checked under the registry study. So, I'm back home from the medical appointments now, holes in both arms and a greasy stomach from the ultrasound lubricant. I'll be quite anxious for the next several days or so as I await to hear about all the results.
In any event, I hope that everyone out there is doing well. I would love to see a "check-in" of sorts just to read about how everyone is, in fact, doing post-treatment.
Take care all.
early on I made a conscious decision not to be treated with interferon & ribavirin - I followed the developments of other drugs including vertex while waited. Along the way I tried Chinese herbs for a few years, watched my diet and had regular blood work.
I turned down several other trials that included interferon and finally this one cam long.aythe riba was nasty - anemia, mood swings and insomnia - but tolerable.
today I have some neuropothy in my feet which I have no evidence that was caused by the drugs -
I turned down several other trials that included interferon and finally this one cam long.aythe riba was nasty - anemia, mood swings and insomnia - but tolerable.
today I have some neuropothy in my feet which I have no evidence that was caused by the drugs -
I moved house and hospital. My old hepatologist tried to persuade me to do interferon (for 48 weeks) - had I done it and failed, I would not have been eligible for this trial (ION-1 was for treatment-naive only).
My new hepatologist was very understanding when I told him I didn't want to do interferon, and kept me on the alert for new trials. I waited for more than a year, maybe two - then got a call in April 2013 from the nurse specialist, who persuaded me to at least to undergo screening for the trial. I was more than hesitant, but when I passed screening, my hepatologist persuaded me to do the trial - saying there were no sides (which there were, for me) and this was my best bet for years to come. He was absolutely right.
I've had gut issues since the trial, but hopefully they are improving, and I now see a gastro, who is ruling out anything serious.
I imagine that the cost of this treatment will be a barrier to many in the US too.
My new hepatologist was very understanding when I told him I didn't want to do interferon, and kept me on the alert for new trials. I waited for more than a year, maybe two - then got a call in April 2013 from the nurse specialist, who persuaded me to at least to undergo screening for the trial. I was more than hesitant, but when I passed screening, my hepatologist persuaded me to do the trial - saying there were no sides (which there were, for me) and this was my best bet for years to come. He was absolutely right.
I've had gut issues since the trial, but hopefully they are improving, and I now see a gastro, who is ruling out anything serious.
I imagine that the cost of this treatment will be a barrier to many in the US too.
So true - when I was diagnosed 15 yrs ago I was lost. Had I not had the good fortune to get an introduction into liver specialist at UM in 2000 I am quite sure my fate would have been very different & while the time is almost here for many it is still a journey with large barriers along the way - for the foreseeable future.
My doctor tells me my liver will heal over time & I have to say my energy levels accede any I can remember in adult life. I think I may well have contracted the disease when I was 18 & I am now 61.
My doctor tells me my liver will heal over time & I have to say my energy levels accede any I can remember in adult life. I think I may well have contracted the disease when I was 18 & I am now 61.
that's great - so pleased for you. We all have every reason to be grateful...to everyone on here - but firstly, the doctors/nurses who invited us to join this trial (in my case, cajoled me somewhat) and looked after us, and Gilead, for developing these drugs.
In the UK, I have learned, there is no way I would have been able to get them (when ledipasvir is licensed) as they will probably only give them to people who are severely cirrhotic initially, unless we pay the full price ($60,000 for sofosbuvir alone for 3 months). So interferon tx will remain standard tx for some time...
I have only mild fibrosis, fortunately, and my hepatologist said that my liver will probably get better over time if I look after it. For those of you with cirrhosis, he did a study which showed that many cirrhotics can reverse the damage over a few years after the hep C is cured.
Let those great results keep rolling in....
In the UK, I have learned, there is no way I would have been able to get them (when ledipasvir is licensed) as they will probably only give them to people who are severely cirrhotic initially, unless we pay the full price ($60,000 for sofosbuvir alone for 3 months). So interferon tx will remain standard tx for some time...
I have only mild fibrosis, fortunately, and my hepatologist said that my liver will probably get better over time if I look after it. For those of you with cirrhosis, he did a study which showed that many cirrhotics can reverse the damage over a few years after the hep C is cured.
Let those great results keep rolling in....
24 EOT results!
yeah!
blood draw was Monday, the called Friday afternoon.
I am so relieved - its over :)
best to all of you and I am truly grateful for all the support, nurturing and caring from all of you - my friends
yeah!
blood draw was Monday, the called Friday afternoon.
I am so relieved - its over :)
best to all of you and I am truly grateful for all the support, nurturing and caring from all of you - my friends
I got my results in 4 days...still undetected at 24 weeks so definitely considered cured and signed up for 3 year study follow up!
All good news!
Take care everyone!
All good news!
Take care everyone!
All good news so far. results seem to be coming in now. I did the ION-1 - 12 weeks so my results were earlier than some who did 24 weeks.
Gibsongal - there is loads of info online about these trials - try looking at the pharma company's website - their press releases (www.gilead.com) or just type in to Google - Gilead ION trial
Gibsongal - there is loads of info online about these trials - try looking at the pharma company's website - their press releases (www.gilead.com) or just type in to Google - Gilead ION trial
I had my 24 week eot done too 3 days ago and am waiting for email on results. I, too, am signed up for 3 year follow up. Feeling great but have cough that is going around and am on a 5 day course of prednisone. Definitely have more energy even though I have this cough. Waiting for spring --we have had a brutal winter this year. Ugh!
Take care all. :)
Take care all. :)
great info as i was searching for the ion info last night at clinical trials..and found nothing published.
good for all of you!
good for all of you!
Went for 24 week EOT yesterday & I am awaiting results of the draw. Presumably I will be getting a letter soon.
Signed up for 3 yr follow study.
Feel pretty darn good
Back pain & neuropathy but manageable
Geno 1a
24 weeks Sobo & RIBA
Was undetectable week 4
Competed in Sebring support race this weekend in vintage HSR - p2 in class :) not bad for an old guy in an old car.
Life is good
Signed up for 3 yr follow study.
Feel pretty darn good
Back pain & neuropathy but manageable
Geno 1a
24 weeks Sobo & RIBA
Was undetectable week 4
Competed in Sebring support race this weekend in vintage HSR - p2 in class :) not bad for an old guy in an old car.
Life is good
it's been about 60 days since I visited this site and posted anything here last. I have just been scanning over those more recent posts and just want to say how happy I am for everyone who has been achieving SVR24 and how much I appreciate everyone having posted their interim and SVR results here for us all, and others, to see, as we have journeyed down this path.
There is light at the end of the tunnel, and it;'s not the one you see while on your deathbed!
Thank you, all.
There is light at the end of the tunnel, and it;'s not the one you see while on your deathbed!
Thank you, all.
Congratulations to both of you
Cheese - it hasn't cured all my ills either, but at least we've got rid of the disease which could have killed us. I don't know your other ills, but it's a huge achievement!
I think that recovery is gradual...
G
Cheese - it hasn't cured all my ills either, but at least we've got rid of the disease which could have killed us. I don't know your other ills, but it's a huge achievement!
I think that recovery is gradual...
G
Jan 2014, achieved SVR 24.
24 weeks 7977+5885 and Riba.
It has not cured all my ills, but there is a welcome improvement.
Cheese.
24 weeks 7977+5885 and Riba.
It has not cured all my ills, but there is a welcome improvement.
Cheese.
Well, I just got my 24 week post tx results and I'm still SVR.
Reminder: 12 weeks sof+led w riba
G1b
Have signed up for 3 year follow up study.
These trials are really the bomb!
Good luck to all
Reminder: 12 weeks sof+led w riba
G1b
Have signed up for 3 year follow up study.
These trials are really the bomb!
Good luck to all
I spent 13yrs being "monitored" before the trial & would welcome another three now that I am "cured"
I definitely would want to participate even though it is a drive to Chicago ! I told coordinator that I would if they wanted me to. Although I guess we could tell our primary dr to order a viral load test a year later if we so wanted to have one done.
Stay well.
Stay well.
Not sure if they're doing 3 yr follow ups in the UK. My family member who did a sofosbuvir+riba trial (VALENCE?) for G3 was not offered the follow up opportunity after his clear EOT 24 test
My EOT 24 (ION 1) test is in a couple of weeks, so I'll ask then. Interested to see if this is just a US-centric thing.
My EOT 24 (ION 1) test is in a couple of weeks, so I'll ask then. Interested to see if this is just a US-centric thing.
RE: your Dec 29th post
Once you go in for your EOT+24, they will probably be asking you if you would like to participate in the long term study. I can't remember if you were ION2 or not, but at least for me, which I presume encompassed any ION2, that study is GS-US-248-0122. I don't even think that the study is ION2 or ION-anything specific; it's just a 3yr SVR followup for anything Gilead.
Once you go in for your EOT+24, they will probably be asking you if you would like to participate in the long term study. I can't remember if you were ION2 or not, but at least for me, which I presume encompassed any ION2, that study is GS-US-248-0122. I don't even think that the study is ION2 or ION-anything specific; it's just a 3yr SVR followup for anything Gilead.
excellent. thanx for posting your SVR12 outcome. One last hurdle for you to jump -- EOT+24 -- fortunately,that hurdle is only six inches high -- only looks high when you're 12 wks away -- I think you'll clear it.
the end of a long hard road.....
got the call today 12 week EOT - SVR !!!!!!!
got the call today 12 week EOT - SVR !!!!!!!
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