Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
Rybronco said
Jun 17, 2014
Congrats to you Maddie and Sara and all those finishing treatment. It has been a joy to watch all of your successes on this site.
I just recieved 4 week EOT and it was still undetected. Next draw will be at 12 weeks EOT. This treatment is a dream come true.
Rockon!!
Tig said
Jun 17, 2014
Congratulations Sara!! I'm so happy to hear your great news and uplifting post. I wish you continued good luck and happiness!
Tig
pierre said
Jun 17, 2014
Congratulations Maddie, congratulations Sara! So great to hear the good news -- & to know that there is treatment now able to slay the dragon.
Am in France right now where the S/O treatment is not yet officially okayed -- & thus not covered by insurance so far -- & people are eagerly waiting.
Pierre
pl1952 said
Jun 17, 2014
Such great news this Tuesday morning! Congrats Sara!
Gator Man said
Jun 17, 2014
Maddie, congratulations to my Tx sister. SVR will be here before you know it.
Sara, we are proud of you as well. I would add that a degree at a traditional college may be less expensive, although our new baccalaureate is well worth the price!
It seems like good news is following everyone on this thread!
Sara said
Jun 17, 2014
Today is graduation day for me! After many years and a failed course, I'm finally getting my diploma and graduating with highest honors - Hepatitis C Undetected.
I am so proud of myself. I want to thank my husband for his love and for putting up with me. I also want to thank my educators, mentors, prescribers and providers. For those who graduated before me, thank you for being my inspiration and helping me to persevere when I wanted to give up. For those still waiting, I urge you to finish.
Now, on to my masters degree a thesis on the immune systems ability to keep the Hepatitis C virus vault locked and a degree in EOT+12 SVR CURED!
What matters in life is what moves you. By all means keep on moving. In the spirit of love, may whoever and/or whatever moves you be good for you.
Belated congrats to Pierre on EOT+4 UND and Tanya and Peter on UND. Congrats PW on starting tx - may you see UND quickly.
Congrats to PL's hubby, Ericka and Dee Dee on EOT - I'm with you
Congrats Maddie on EOT+8.
Peter M said
Jun 17, 2014
That is such great news, Maddie! Keep on keeping on!
pl1952 said
Jun 16, 2014
Congrats Maddie!
Groupergetter said
Jun 16, 2014
Congratulations maddie, SVR, SVR, SVR
Barnacle said
Jun 16, 2014
maddie wrote:
Just got results of my 8 wk post treatment bloods....NEGATIVE for the virus!!! Did 12 wks S/O no Riba.
Great news Maddie!
Barnacle said
Jun 16, 2014
tgcd78 wrote:
How are all of you post treatment people feeling? I completed week 3 of treatment and have waves of great and blah. Today I happen to be great. I wonder how it will be when I am off of the meds.
I still have 2 weeks to go but those blah days became fewer and further between. I currently feel better than I have in years although I get out of breath a little easier than I used to because the riba is lowering my HGB.
Hang in there it's a short ride but well worth it.
Dee Dee said
Jun 16, 2014
Great news Maddie! . Hopefully I'll be getting great news shortly as well. My doc wanted to get my VL right after I finished treatment last week. Waiting impatiently... Lol
Fireman Rob said
Jun 16, 2014
That's so awesome Maddie! And reassuring as a few of us now are on the same combo. It makes me cry to know how lucky we are to have this opportunity. Thanks for sharing and please keep us posted.
-Rob
-- Edited by Fireman Rob on Tuesday 17th of June 2014 12:33:11 AM
tgcd78 said
Jun 16, 2014
How are all of you post treatment people feeling? I completed week 3 of treatment and have waves of great and blah. Today I happen to be great. I wonder how it will be when I am off of the meds.
maddie said
Jun 16, 2014
Just got results of my 8 wk post treatment bloods....NEGATIVE for the virus!!! Did 12 wks S/O no Riba.
Mike716 said
Jun 15, 2014
Hi, Pierre.
You are right, there is no reliable data yet on S+O SVR rates. Everyone is waiting anxiously for it, especially those of us who have to decide whether to treat now or wait until October for Gilead's double pill. We are guinea pigs, throwing the dice.
Mike
pierre said
Jun 15, 2014
After the test at treatment's end, my doc okayed three more right away: after 1, 2 & then 3 months, the last one obviously would make me SVR (... 2 months to go...). Seems he is interested in the series in order to see when/if any backsliding happens. Given the newness of the tx, there isn't really that much data about post-tx events. Has anyone here heard of any such study results from last year's Cosmos trials (I'd think they they'd follow the patients & would eventually release info, but haven't come across anything)?
Pierre
Mike716 said
Jun 15, 2014
That would be very helpful, Rob.
Fireman Rob said
Jun 15, 2014
Mike,
I would love to do a four, 12, and 24 post tx, VL test if possible. Most of these details can be arranged through the doc and I'm still in the Tx phase of testing but plan to see what my doc thinks and will consider past Tx when it gets closer.
Right now I'm just starting week two but I will definitely keep you posted on how I was able schedule my post Tx VL tests. Hopefully that helps?
Rob
Mike716 said
Jun 15, 2014
Hi, Rob.
Been having a discussion on another thread about best sequence of VL tests for 12- week S+O. The consensus seems to be: before starting, mid-way (6 weeks), EOT (12 weeks), and 12 weeks post-EOT.
Do you think a 4 weeks post-EOT VL is better than waiting for 12 weeks? Or would you do both the 4- and 12-week post-Tx?
Mike
Dee Dee said
Jun 13, 2014
Thank you PW... wishing you the best !
Dee Dee said
Jun 13, 2014
Thanks... I guess if nothing else I can look forward to October when the new and improved meds are coming out..hopefully I won't need them tho
Matt Chris said
Jun 13, 2014
Hey Dee Dee
Congrats on making it to the EOT, its like you said coming off the meds we can have mixed emotions happy its over but knowing our body is now taking over the all immune functions.
If you have acheived UND during treatment its almost a given that you will be UND at treatments end. The most important test is the four weeks after EOT it will be the one you cry at either way.
Keep your healthy ways in eating and exercising and all will bw well.
matt
patiently_waiting said
Jun 12, 2014
Dee Dee wrote:
Hi guys.. took my last dose of Sovaldi & Olysio today. My doctor called me yesterday and wanted me to come in to get a VL test done today. I thought I'd have to wait a month after ending treatment before bloodwork? He said he wanted to see if it was still undetected. Has anyone heard of it coming back mid-treatment? The lab said it could take about 5 days to get results. Pray for me please.. I hope it's still gone. I see so many coming back with such good news .. it's really exciting.. but in the back of my mind I remember the Q80K thing and seen a few non responders on this treatment.. it scares me. Oh well... guess I have to wait and see. Just had to vent a little.. getting nervous and excited at the same time.
Dee Dee I'm pulling for you. It's going to be the longest few days of your life waiting for those results so hang in there! And congrats on polishing off the last of those pills. You've done all you can do now so try to relax and think positive. The odds are on your side.
Dee Dee said
Jun 12, 2014
Thanks so much Rob.. I will keep everyone posted. It's weird but I felt kinda sad taking my last dose... I felt like while I was taking it I was okay.. Now I'm on my own. Know what I mean? I know, I need to quit... Maybe I'm just preparing myself for the worst. But either way.. I'll be here reading away and post something as soon as I can. You guys feel like friends to me... Lots of support and encouragement and advise! I thank you all for contributing to this forum.. I've been here everyday reading for the last three months and I've learned a lot and feel grateful to have been a small part of this. I hope we all get rid of this virus...once and for all.
Fireman Rob said
Jun 12, 2014
Dee Dee,
Chances are, you're good to go and SVR is right around the corner. I can't wait until I'm where you are right now (EOT). Congrats and please let us know when you find out the great news!
Best,
Rob
Dee Dee said
Jun 12, 2014
thank you so much Isiscat! I'll try...
Isiscat2011 said
Jun 12, 2014
Dee Dee wrote:
but in the back of my mind I remember the Q80K thing
Q80K does not appear to be a big concern when Olysio is taken with Sovaldi. Try not to worry. :)
Dee Dee said
Jun 12, 2014
Hi guys.. took my last dose of Sovaldi & Olysio today. My doctor called me yesterday and wanted me to come in to get a VL test done today. I thought I'd have to wait a month after ending treatment before bloodwork? He said he wanted to see if it was still undetected. Has anyone heard of it coming back mid-treatment? The lab said it could take about 5 days to get results. Pray for me please.. I hope it's still gone. I see so many coming back with such good news .. it's really exciting.. but in the back of my mind I remember the Q80K thing and seen a few non responders on this treatment.. it scares me. Oh well... guess I have to wait and see. Just had to vent a little.. getting nervous and excited at the same time.
pl1952 said
Jun 12, 2014
Congratulations Ericka!! Hi Mary, I'll be with you and Matt come October!
patiently_waiting said
Jun 12, 2014
That's awesome Ericka. Congratulations! I'm sure your next one will be UND and HCV can forever be in your rear view mirror.
optimistic said
Jun 12, 2014
I had my appointment with my doctor today after 12 weeks of olysio solvaldi 4 weeks und 8 weeks und 12 weeks und it is over. i go back in 3 months for one more blood test but he says it is GONE. These meds are the best. Now we need a cure for cancer. good luck to all
Mugsy said
Jun 12, 2014
I've made my October appointment already, too.
pl1952 said
Jun 12, 2014
Thanks Gatorman, Maddie & Matt! Matt! I'm all ready for October too! Appt. set, just like you...been waiting since February for this...We'll be treatment buddies! :) Wondering how many others are waiting for October..
Gator Man said
Jun 12, 2014
Matt, your patience will soon be rewarded! Thanks for cheering all of us on while waiting to start your new tx.
Pl, Maddie, Peter, Rob and Greg, the good news will keep on coming!
To follow Matt's analogy, this is one game I don't mind running up the score!
-- Edited by Gator Man on Thursday 12th of June 2014 07:23:52 PM
maddie said
Jun 12, 2014
Thanks for replying, Gator. Now I understand. I thought you started about a week before I did and yet I had my 8week bld draw last week so was confused as to why you would be getting an 8 week drawn at 10 weeks. Got it now!! I still haven't gotten the results for my 8wk post tx but hopefully I will still be undetected. I'm glad to hear that if svr4 is attained, that odds are improved for svr12. I'm still praying for all of us.
Pl, I'm happy to see that your husband is UND at end of treating. Now the good thoughts toward svr.
Matt, I am so glad that you will be ready to jump right in there for the new meds. "The early bird...gets the worm!" Thank God for all these new meds and for the scientists that worked so hard to develop them.
Matt Chris said
Jun 12, 2014
Hey Gator, Peter, Pl
So much good news at different stages, it's like we are watching a baseball game with the bases loaded and the hitter is driving in one run after another.
PL having your husband coming to the EOT is a exciting time, he will be need support and assurance during the 4 weeks of waiting, it can be a stressful time. Sometimes we overthink ever little feeling we get during those 4 weeks.
I am also waiting for that Oct 10 date for Gileads new combo, already made my doctor appointment and hope inform my insurance company ahead of time so as to soften the blow. The waiting six month since FDA Gileads priority review has been granted has been hard but have to keep busy and healthy to pass the time. I hope we are happy how it all shakes out when Oct 10 comes and goes.
Gatorman your right about the 4 week test, its the most important and hardest UND reading to get, if you pass that your odds go way up for SVR.
matt
pl1952 said
Jun 11, 2014
Good luck Greg! I think we've all become counters these days! :)
Groupergetter said
Jun 11, 2014
Great to see so much good news here for everyone. Hoping we all can find our way to SVR. 13 days to my 4 week labs but hey who's counting? Praying we get thru this.
pl1952 said
Jun 11, 2014
Thanks Tig! Very exciting times, indeed!! I'm counting the days till October! Can't wait. Thanks for the good words!
And congrats to GM and Peter!!! :)
Gator Man said
Jun 11, 2014
Congrats Peter!
I don't think I've been referred to as a "rat" in a nicer context Duane!
Maddie, the draw is at 10 weeks EOT. My doctor wanted to make sure that he had the results prior to my appointment on June 25th which will be 12 weeks post EOT.
For what its worth, he did mention that a relapse was more far more likely to occur at EOT 4 weeks than at any later time.
Tig said
Jun 11, 2014
Hey PL,
YEAH!!! Tell your husband congratulations for me and I wish him the absolute best of luck for his upcoming SVR. Sometimes, we all have a feeling when good things are just around the corner and I sure do this time. How have you been feeling? Let us know what's going on when you can. We're all really cheering and rooting you both on, keep up the great work!!
Tig
Tig said
Jun 11, 2014
Hey Peter,
WOOT Congratulations my friend!! Onward to week 12 and SVR!
Tig
maddie said
Jun 11, 2014
Yay Peter. Fantastic.
Gator is this blood draw for your 8 wk post treatment vl?
-- Edited by maddie on Wednesday 11th of June 2014 08:52:31 PM
Fireman Rob said
Jun 11, 2014
Congrats Peter,
You're on the downhill slope of tx too. That's awesome!
pl1952 said
Jun 11, 2014
Hubby just finished 12 weeks of treatment today!!! Woo HOOO!!!! Onward to SVR!
Peter M said
Jun 11, 2014
Just a quick note. My treatment nurse called this morning to give me my 8 week VL. Undetected! Yayyy!!!
Dzdayscomin said
Jun 11, 2014
Good luck GM,
You are kind of like my lab rat lol........If it works for you.................. I gotta be good !
I should know in a few days if I am UND at EOT I'm "itchin" to find out. Ya know I'm seeing how easy these puns fall together in this disease.
I guess humor is my release even if I'm the only one that thinks it's funny !
Again hoping you are cured GM and off to the rest of life...I'm sure you'll miss all those little virons...............not!!
Duane
patiently_waiting said
Jun 11, 2014
Rob, So far I can barely tell I'm even taking anything. I can feel something, but it's nothing bad. Of course it's only day 2 and I work at a desk so that probably helps.
-- Edited by patiently_waiting on Wednesday 11th of June 2014 08:00:25 PM
Fireman Rob said
Jun 11, 2014
Gator Man,
I'm really looking forward to your next report! This is exciting...
PW,
I feel great today but the past two days were rough. Maybe it was that 3 million VL hitting the floor quickly? Day one was leg tingling and aches, yesterday was extreme fatigue, and today is awesome! Weird but I'll take it! Hopefully you're doing well also!
Congrats to you Maddie and Sara and all those finishing treatment. It has been a joy to watch all of your successes on this site.
I just recieved 4 week EOT and it was still undetected. Next draw will be at 12 weeks EOT. This treatment is a dream come true.
Rockon!!
Congratulations Sara!! I'm so happy to hear your great news and uplifting post. I wish you continued good luck and happiness!
Tig
Congratulations Maddie, congratulations Sara! So great to hear the good news -- & to know that there is treatment now able to slay the dragon.
Am in France right now where the S/O treatment is not yet officially okayed -- & thus not covered by insurance so far -- & people are eagerly waiting.
Pierre
Such great news this Tuesday morning! Congrats Sara!
Maddie, congratulations to my Tx sister. SVR will be here before you know it.
Sara, we are proud of you as well. I would add that a degree at a traditional college may be less expensive, although our new baccalaureate is well worth the price!
It seems like good news is following everyone on this thread!
Today is graduation day for me! After many years and a failed course, I'm finally getting my diploma and graduating with highest honors - Hepatitis C Undetected.
I am so proud of myself. I want to thank my husband for his love and for putting up with me. I also want to thank my educators, mentors, prescribers and providers. For those who graduated before me, thank you for being my inspiration and helping me to persevere when I wanted to give up. For those still waiting, I urge you to finish.
Now, on to my masters degree a thesis on the immune systems ability to keep the Hepatitis C virus vault locked and a degree in EOT+12 SVR CURED!
What matters in life is what moves you. By all means keep on moving. In the spirit of love, may whoever and/or whatever moves you be good for you.
Belated congrats to Pierre on EOT+4 UND and Tanya and Peter on UND. Congrats PW on starting tx - may you see UND quickly.
Congrats to PL's hubby, Ericka and Dee Dee on EOT - I'm with you
Congrats Maddie on EOT+8.
That is such great news, Maddie! Keep on keeping on!
Congrats Maddie!
Congratulations maddie, SVR, SVR, SVR
Great news Maddie!
I still have 2 weeks to go but those blah days became fewer and further between. I currently feel better than I have in years although I get out of breath a little easier than I used to because the riba is lowering my HGB.
Hang in there it's a short ride but well worth it.
That's so awesome Maddie! And reassuring as a few of us now are on the same combo. It makes me cry to know how lucky we are to have this opportunity. Thanks for sharing and please keep us posted.
-Rob
-- Edited by Fireman Rob on Tuesday 17th of June 2014 12:33:11 AM
How are all of you post treatment people feeling? I completed week 3 of treatment and have waves of great and blah. Today I happen to be great. I wonder how it will be when I am off of the meds.
Just got results of my 8 wk post treatment bloods....NEGATIVE for the virus!!!
Did 12 wks S/O no Riba.
Hi, Pierre.
You are right, there is no reliable data yet on S+O SVR rates. Everyone is waiting anxiously for it, especially those of us who have to decide whether to treat now or wait until October for Gilead's double pill. We are guinea pigs, throwing the dice.
Mike
After the test at treatment's end, my doc okayed three more right away: after 1, 2 & then 3 months, the last one obviously would make me SVR (... 2 months to go...). Seems he is interested in the series in order to see when/if any backsliding happens. Given the newness of the tx, there isn't really that much data about post-tx events. Has anyone here heard of any such study results from last year's Cosmos trials (I'd think they they'd follow the patients & would eventually release info, but haven't come across anything)?
Pierre
That would be very helpful, Rob.
Mike,
I would love to do a four, 12, and 24 post tx, VL test if possible. Most of these details can be arranged through the doc and I'm still in the Tx phase of testing but plan to see what my doc thinks and will consider past Tx when it gets closer.
Right now I'm just starting week two but I will definitely keep you posted on how I was able schedule my post Tx VL tests. Hopefully that helps?
Rob
Hi, Rob.
Been having a discussion on another thread about best sequence of VL tests for 12- week S+O. The consensus seems to be: before starting, mid-way (6 weeks), EOT (12 weeks), and 12 weeks post-EOT.
Do you think a 4 weeks post-EOT VL is better than waiting for 12 weeks? Or would you do both the 4- and 12-week post-Tx?
Mike
Hey Dee Dee
Congrats on making it to the EOT, its like you said coming off the meds we can have mixed emotions happy its over but knowing our body is now taking over the all immune functions.
If you have acheived UND during treatment its almost a given that you will be UND at treatments end. The most important test is the four weeks after EOT it will be the one you cry at either way.
Keep your healthy ways in eating and exercising and all will bw well.
matt
Dee Dee I'm pulling for you. It's going to be the longest few days of your life waiting for those results so hang in there! And congrats on polishing off the last of those pills. You've done all you can do now so try to relax and think positive. The odds are on your side.
Dee Dee,
Chances are, you're good to go and SVR is right around the corner. I can't wait until I'm where you are right now (EOT). Congrats and please let us know when you find out the great news!
Best,
Rob
thank you so much Isiscat! I'll try...
Q80K does not appear to be a big concern when Olysio is taken with Sovaldi. Try not to worry. :)
Hi guys.. took my last dose of Sovaldi & Olysio today. My doctor called me yesterday and wanted me to come in to get a VL test done today. I thought I'd have to wait a month after ending treatment before bloodwork? He said he wanted to see if it was still undetected. Has anyone heard of it coming back mid-treatment? The lab said it could take about 5 days to get results. Pray for me please.. I hope it's still gone. I see so many coming back with such good news .. it's really exciting.. but in the back of my mind I remember the Q80K thing and seen a few non responders on this treatment.. it scares me. Oh well... guess I have to wait and see. Just had to vent a little.. getting nervous and excited at the same time.



Congratulations Ericka!! Hi Mary, I'll be with you and Matt come October!
I had my appointment with my doctor today after 12 weeks of olysio solvaldi 4 weeks und 8 weeks und 12 weeks und it is over. i go back in 3 months for one more blood test but he says it is GONE. These meds are the best. Now we need a cure for cancer. good luck to all
I've made my October appointment already, too.
Thanks Gatorman, Maddie & Matt! Matt! I'm all ready for October too! Appt. set, just like you...been waiting since February for this...We'll be treatment buddies! :) Wondering how many others are waiting for October..
Matt, your patience will soon be rewarded! Thanks for cheering all of us on while waiting to start your new tx.
Pl, Maddie, Peter, Rob and Greg, the good news will keep on coming!
To follow Matt's analogy, this is one game I don't mind running up the score!
-- Edited by Gator Man on Thursday 12th of June 2014 07:23:52 PM
Thanks for replying, Gator. Now I understand. I thought you started about a week before I did and yet I had my 8week bld draw last week so was confused as to why you would be getting an 8 week drawn at 10 weeks.
Got it now!! I still haven't gotten the results for my 8wk post tx but hopefully I will still be undetected. I'm glad to hear that if svr4 is attained, that odds are improved for svr12. I'm still praying for all of us.
Pl, I'm happy to see that your husband is UND at end of treating. Now the good thoughts toward svr.
Matt, I am so glad that you will be ready to jump right in there for the new meds. "The early bird...gets the worm!"
Thank God for all these new meds and for the scientists that worked so hard to develop them.
Hey Gator, Peter, Pl
So much good news at different stages, it's like we are watching a baseball game with the bases loaded and the hitter is driving in one run after another.
PL having your husband coming to the EOT is a exciting time, he will be need support and assurance during the 4 weeks of waiting, it can be a stressful time. Sometimes we overthink ever little feeling we get during those 4 weeks.
I am also waiting for that Oct 10 date for Gileads new combo, already made my doctor appointment and hope inform my insurance company ahead of time so as to soften the blow. The waiting six month since FDA Gileads priority review has been granted has been hard but have to keep busy and healthy to pass the time. I hope we are happy how it all shakes out when Oct 10 comes and goes.
Gatorman your right about the 4 week test, its the most important and hardest UND reading to get, if you pass that your odds go way up for SVR.
matt
Good luck Greg! I think we've all become counters these days! :)
Great to see so much good news here for everyone. Hoping we all can find our way to SVR. 13 days to my 4 week labs but hey who's counting?
Praying we get thru this.
Thanks Tig! Very exciting times, indeed!! I'm counting the days till October! Can't wait. Thanks for the good words!
And congrats to GM and Peter!!! :)
Congrats Peter!
I don't think I've been referred to as a "rat" in a nicer context Duane!
Maddie, the draw is at 10 weeks EOT. My doctor wanted to make sure that he had the results prior to my appointment on June 25th which will be 12 weeks post EOT.
For what its worth, he did mention that a relapse was more far more likely to occur at EOT 4 weeks than at any later time.
Hey PL,
YEAH!!! Tell your husband congratulations for me and I wish him the absolute best of luck for his upcoming SVR. Sometimes, we all have a feeling when good things are just around the corner and I sure do this time. How have you been feeling? Let us know what's going on when you can. We're all really cheering and rooting you both on, keep up the great work!!
Tig
Hey Peter,
Tig
Yay Peter. Fantastic.
Gator is this blood draw for your 8 wk post treatment vl?
-- Edited by maddie on Wednesday 11th of June 2014 08:52:31 PM
Congrats Peter,
You're on the downhill slope of tx too. That's awesome!
Hubby just finished 12 weeks of treatment today!!! Woo HOOO!!!! Onward to SVR!
Just a quick note. My treatment nurse called this morning to give me my 8 week VL. Undetected! Yayyy!!!
Good luck GM,
You are kind of like my lab rat lol........If it works for you.................. I gotta be good !
I should know in a few days if I am UND at EOT I'm "itchin" to find out. Ya know I'm seeing how easy these puns fall together in this disease.
I guess humor is my release even if I'm the only one that thinks it's funny !
Again hoping you are cured GM and off to the rest of life...I'm sure you'll miss all those little virons...............not!!
Duane
Rob,
So far I can barely tell I'm even taking anything. I can feel something, but it's nothing bad. Of course it's only day 2 and I work at a desk so that probably helps.
-- Edited by patiently_waiting on Wednesday 11th of June 2014 08:00:25 PM
Gator Man,
I'm really looking forward to your next report! This is exciting...
PW,
I feel great today but the past two days were rough. Maybe it was that 3 million VL hitting the floor quickly? Day one was leg tingling and aches, yesterday was extreme fatigue, and today is awesome! Weird but I'll take it! Hopefully you're doing well also!
-Talk Soon Guys