SVR16 instead of SVR12? Anyone waiting for 16 Weeks EOT with Harvoni?
Cinnamon Girl said
May 23, 2015
basser wrote:
hi all.was told this wk by specialist that im cured. was told at start of tx that as im cirrotic i would be svr at 24wks.if virus undetected.so have been looking at that date.seems they have changed their minds now as the data is coming back.good news though.this interferon free tx is amazing.it will save so many lives.good health to you all william
Hi William,
Good to see your update and big congrats on your SVR! I know it`s been a long and frustrating wait for you and I`m so pleased you can finally relax knowing that you`ve beaten the Hep C Dragon for good!
Take care and best of luck with your ongoing recovery ... get out and enjoy the sunshine, that`s what I`m planning for today!
Cinnamon Girl said
May 23, 2015
Hi again Tess,
I imagine you`re right about that, it sounds like a misunderstanding on the part of your nurse, taking the 12 weeks from the 4 wk post tx viral load test you had rather than from the EOT.
A bit frustrating for you and you could press for a 12 wk viral load test instead but the outcome is pretty much assured at this point as you`ve responded so well and were still UND at 4 wks post EOT, so try not to get stressed about it!
We`ll look forward to celebrating your SVR16!
-- Edited by Cinnamon Girl on Saturday 23rd of May 2015 09:45:28 AM
Tess said
May 23, 2015
Thanks for the replies. Yep, it seems like the 16-week post EOT VL instead of 12 weeks is a screw up by my doctor's office.
I asked the nurse who scheduled the 16-wk EOT test to check with the doctor in case there was a misunderstanding, but she was steadfast at 16 weeks. She'd already made an exception by letting me have a 4-week post tx VL. Originally they wanted to skip that until I called a few times asking for it. So now she says the doctor allowed the 4-wk EOT VL, and 3 months after that. (But I think he meant 3 months after EOT)
They already see me as a pain for pushing for 12 weeks on treatment instead of the 8 weeks the doctor wanted, and for asking for that 4-week EOT VL. I won those battles and guess I can wait a few more weeks for the 16 wk EOT VL - - just a bit more stress! They got me approved for Harvoni quickly last November and I'm thankful for that.
Best of luck to everyone!
- Tess
Tig said
May 22, 2015
Hi William,
Thats great news! You have a lot to be thankful for this holiday weekend! If there has ever been a happy time for everyone affected by this disease, it's now. These new all oral DAA's are the bomb, a Dragon bomb!! Congratulations!
basser said
May 22, 2015
hi all.was told this wk by specialist that im cured. was told at start of tx that as im cirrotic i would be svr at 24wks.if virus undetected.so have been looking at that date.seems they have changed their minds now as the data is coming back.good news though.this interferon free tx is amazing.it will save so many lives.good health to you all william
Bills said
May 22, 2015
Hi beacuse of this post i figured I'd call my Doc office and ask when I should Check
She is going to e-mail me a blood draw requistion today so i can go to labcore next Friday and get " the day after treatment " EOT spot check
If I'm UND they most likley will do 4th week EOT and a visit then They Opt to do it again at 8 if there is ant real reason but definitely 12 weeks EOT is SVR
That's My doctors at Weil Cornell in NYC others may differ slightly. Some here may know of a DR Ira Jacobson who was head of the department has left about ? 8 months ago. All I'll say is I don't miss him he was never my primary doctor there. I have all the respect in the world for the Staff who is always there. For example My doc and his direct assistant nurse is not there today and the stand in is sending me a blood draw request to use next week in my email, and was happy to do it. I can go on the Cornell site see blood work from ? 2009? every MRI, Ultra sound everything the ever requested. They are always on it all the time. That staff got me my last 2 refills of HARVONI co-pay Free. Without that copay would have been $10,000.00 when the 12 weeks 5$ copay ran out Support path didn't do anything to help with that. They called after my med would have run out or if I paid 5K a bottle 20% copay. They asked if got the med and when did I get it. I said yes they asked how did you get it? I chucked and said If you don't know then I don't know.
I have said good things about Cornell in the past but I avoid telling anyone leave your doctor and go to Cornell. Maybe I did well cause I have really good insurance which also makes me easy yo help. I don't know all the insurances they take but NOT every doc takes all the insurances. They each decide or choose to work with what ever insurance they feel comfortable taking. maybe I didn't get Jacobson cause he don't take BCBS? I'm just guessing and as I said I'm fine with that. Stop me if you think I'm out of line but that,s how I feel
I hoping for all of us that we have got the Right Drug no matter how we get it or who we get it from. The waiting game is the tough part. But I'm seeing tested or not Harvoni is doing the job. In my relapses I can recall I felt something was up at a point and sure enough next test was bad news. We got really good odds here best that's ever been unless you want to wait next round of meds Hey if you have the time it might be the thing for you. I'll stop so try to hold on and focus on the good news that's being posted here if you can at least your not alone.
BS
Tig said
May 22, 2015
There seems to be so many online articles that still state SVR is determined as having an undetected viral load at "12 or 24" weeks. I wonder if some doctors aren't simply picking a date somewhere between the two. But as Jill mentioned, the new standard is 12 weeks.
From the Harvoni Monograph:
"Sustained virologic response (SVR) was the primary endpoint to determine the HCV cure rate which was defined as HCV RNA less than Lower Limit of Quantitation (LLOQ) at 12 weeks after the cessation of treatment"
Cinnamon Girl said
May 22, 2015
Hi Tess,
No, it`s not a new strategy to wait until 16 weeks post tx instead of 12 and I`m not sure why your doctor and others are choosing to do this. It`s standard procedure with Harvoni and the other new DAA drugs to test the viral load at 12 weeks post EOT and if the virus is still undetected that is considered as SVR, and your doctor should really be aware of this.
I know an extra 4 weeks to wait isn`t long, especially as you were undetected at 4 wks post, but I`m not aware of any reason why you should have to!
Good luck!
Tess said
May 20, 2015
Is anyone else waiting for 16 weeks after EOT instead of 12 to test for SVR after treating with Harvoni? My doctor is waiting until 16 weeks for a viral load after I treated for 12 weeks on Harvoni with an UND VL at 4 weeks post-tx. Another forum member has been told to wait 16 weeks also, after they finish a 24 week treatment. Wondering if it's a new strategy to test at 16 weeks EOT instead of 12, or just the doctor's choice?
Hi William,
Good to see your update and big congrats on your SVR! I know it`s been a long and frustrating wait for you and I`m so pleased you can finally relax knowing that you`ve beaten the Hep C Dragon for good!
Take care and best of luck with your ongoing recovery ... get out and enjoy the sunshine, that`s what I`m planning for today!
Hi again Tess,
I imagine you`re right about that, it sounds like a misunderstanding on the part of your nurse, taking the 12 weeks from the 4 wk post tx viral load test you had rather than from the EOT.
A bit frustrating for you and you could press for a 12 wk viral load test instead but the outcome is pretty much assured at this point as you`ve responded so well and were still UND at 4 wks post EOT, so try not to get stressed about it!
We`ll look forward to celebrating your SVR16!
-- Edited by Cinnamon Girl on Saturday 23rd of May 2015 09:45:28 AM
Thanks for the replies. Yep, it seems like the 16-week post EOT VL instead of 12 weeks is a screw up by my doctor's office.
I asked the nurse who scheduled the 16-wk EOT test to check with the doctor in case there was a misunderstanding, but she was steadfast at 16 weeks. She'd already made an exception by letting me have a 4-week post tx VL. Originally they wanted to skip that until I called a few times asking for it. So now she says the doctor allowed the 4-wk EOT VL, and 3 months after that. (But I think he meant 3 months after EOT)
They already see me as a pain for pushing for 12 weeks on treatment instead of the 8 weeks the doctor wanted, and for asking for that 4-week EOT VL. I won those battles and guess I can wait a few more weeks for the 16 wk EOT VL - - just a bit more stress! They got me approved for Harvoni quickly last November and I'm thankful for that.
Best of luck to everyone!
- Tess
Hi William,
Thats great news! You have a lot to be thankful for this holiday weekend! If there has ever been a happy time for everyone affected by this disease, it's now. These new all oral DAA's are the bomb, a Dragon bomb!! Congratulations!
hi all.was told this wk by specialist that im cured. was told at start of tx that as im cirrotic i would be svr at 24wks.if virus undetected.so have been looking at that date.seems they have changed their minds now as the data is coming back.good news though.this interferon free tx is amazing.it will save so many lives.good health to you all william
Hi beacuse of this post i figured I'd call my Doc office and ask when I should Check
She is going to e-mail me a blood draw requistion today so i can go to labcore next Friday and get " the day after treatment " EOT spot check
If I'm UND they most likley will do 4th week EOT and a visit then They Opt to do it again at 8 if there is ant real reason but definitely 12 weeks EOT is SVR
That's My doctors at Weil Cornell in NYC others may differ slightly. Some here may know of a DR Ira Jacobson who was head of the department has left about ? 8 months ago. All I'll say is I don't miss him he was never my primary doctor there. I have all the respect in the world for the Staff who is always there. For example My doc and his direct assistant nurse is not there today and the stand in is sending me a blood draw request to use next week in my email, and was happy to do it. I can go on the Cornell site see blood work from ? 2009? every MRI, Ultra sound everything the ever requested. They are always on it all the time. That staff got me my last 2 refills of HARVONI co-pay Free. Without that copay would have been $10,000.00 when the 12 weeks 5$ copay ran out Support path didn't do anything to help with that. They called after my med would have run out or if I paid 5K a bottle 20% copay. They asked if got the med and when did I get it. I said yes they asked how did you get it? I chucked and said If you don't know then I don't know.
I have said good things about Cornell in the past but I avoid telling anyone leave your doctor and go to Cornell. Maybe I did well cause I have really good insurance which also makes me easy yo help. I don't know all the insurances they take but NOT every doc takes all the insurances. They each decide or choose to work with what ever insurance they feel comfortable taking. maybe I didn't get Jacobson cause he don't take BCBS? I'm just guessing and as I said I'm fine with that. Stop me if you think I'm out of line but that,s how I feel
I hoping for all of us that we have got the Right Drug no matter how we get it or who we get it from. The waiting game is the tough part. But I'm seeing tested or not Harvoni is doing the job. In my relapses I can recall I felt something was up at a point and sure enough next test was bad news. We got really good odds here best that's ever been unless you want to wait next round of meds Hey if you have the time it might be the thing for you. I'll stop so try to hold on and focus on the good news that's being posted here if you can at least your not alone.
BS
There seems to be so many online articles that still state SVR is determined as having an undetected viral load at "12 or 24" weeks. I wonder if some doctors aren't simply picking a date somewhere between the two. But as Jill mentioned, the new standard is 12 weeks.
From the Harvoni Monograph:
"Sustained virologic response (SVR) was the primary endpoint to determine the HCV cure rate which was defined as HCV RNA less than Lower Limit of Quantitation (LLOQ) at 12 weeks after the cessation of treatment"
Hi Tess,
No, it`s not a new strategy to wait until 16 weeks post tx instead of 12 and I`m not sure why your doctor and others are choosing to do this. It`s standard procedure with Harvoni and the other new DAA drugs to test the viral load at 12 weeks post EOT and if the virus is still undetected that is considered as SVR, and your doctor should really be aware of this.
I know an extra 4 weeks to wait isn`t long, especially as you were undetected at 4 wks post, but I`m not aware of any reason why you should have to!
Good luck!
Is anyone else waiting for 16 weeks after EOT instead of 12 to test for SVR after treating with Harvoni? My doctor is waiting until 16 weeks for a viral load after I treated for 12 weeks on Harvoni with an UND VL at 4 weeks post-tx. Another forum member has been told to wait 16 weeks also, after they finish a 24 week treatment. Wondering if it's a new strategy to test at 16 weeks EOT instead of 12, or just the doctor's choice?
Best of luck to everyone!
- Tess