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Hep C Discussion Forum -> On Treatment -> Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
Post Info TOPIC: Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
Marypetrecz


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RE: Would those taking off-label Sovaldi/Olysio with or without Riba mind posting here?
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Woot woo!!!!!!   The hits keep coming.....so happy for you!



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pierre


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Yeah, Gator Man! Bravo & congrats! You got your life back. So great to hear the SVR news gives all of us waiting for those post-tx weeks to be over courage.



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HCV 1b -- detected 2011 -- pre-cirrhotic -- vl has varied from 3million to 150thou-- first tx Sovaldi/Olysio started 2.6.14. finished 4.28.14. Since 4 weeks post-tx I have been UND with liver functions back to normal. SVR at 12 weeks post-tx.
Tig


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 WOOT    Yes sir Gator Man!! I'm loving what I'm reading Brother!! I'm big time happy for you, congratulations!!

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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jimbob


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Congratulation  GM!  I love hearing the success stories of those on the new DAA's. It gives everyone much hope. Good luck.



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jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
OldenSlow


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12 - zip. A shutout. Music to our ears, Gator Man. So many of us hoping for same. Many thanks for your helpful posts throughout. Best of health to you going forward and don't be a stranger!   wink

wayne

 



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
maddie


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clap.gif Gator Man....HOORAY!!!! I love the final score!  It's been a long haul since 1982.

 

I"m supposed to have 12 wk eot done next Thursday but because of the 4th of July holiday w/e I am going to wait till the following Monday.  Don't want any mess up with this final blood draw...smile  So won't have my results for another week after that. 

 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!..SVR 24 :-)
Fireman Rob


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Gatorman,

That is so awesome! I'm so happy for you that words can't express! What a fantastic gift. This gives me so much hope too. Way to go!

 



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Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
Gator Man


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 Gator Man wrote:

"I am new to the forum so I will introduce myself. I am a 53 year old male diagnosed with Hepatitis C  (1b) in 2001, almost certainly the result of numerous blood transfusions in 1982. I was a null responder to Interferon/Ribavirin in 2001 and have been waiting for better treatment options."

That was my first post on January 6, 2014.  The jpeg is from the lab results I received yesterday. The chicken scratch on the lower right next to the smiley face is my doctor noting that I am SVR12. It also shows my AST and ALT in the normal range.

When maddie started this thread for all of us just beginning the off label Sovaldi/Olysio combination, there were a lot of unknowns. I think we definitely have "better treatment options" with even more promise on the horizon. If you had asked me a year ago, I wasn't confident that I would ever see this day.

 

 

SVR062514.jpg



-- Edited by Gator Man on Thursday 26th of June 2014 02:38:08 PM

__________________

Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
Sara


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Thank you Lisa for your kind words and the hug. 

Congrats Kurt on EOT!



-- Edited by Sara on Saturday 21st of June 2014 08:22:42 PM

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Sovaldi/Olysio/Riba 2 week vl 16 4 week vl UND! EOT vl UND! EOT+12 SVR!  EOT+24 SVR!!

 
Loopy Lisa


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Sara wrote:

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 biggrin

Congrats Maddie on EOT+8. 

 

 Congratulations to everyone, but Zara, you are an amazing woman I don't know your story, but you sure made me feel inspired. Hugs x



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Marypetrecz


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I had to stop riding about 2 years ago....totally...it was too hard and took too much out of me,  I only have young horses......they are wonderful but I'm not supposed to take any risks.....I'm thinking of cheating soon anyway,,,I feel great and want to get back into riding condition,,,lol



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Tig


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Hey Kurt,

Congratulations on finishing treatment!! Good luck on all of your tests today and onward to SVR!!! Good luck...

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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OldenSlow


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Marypetrecz wrote:

...you are talking about when your finished.....not during...correct?  So maybe a few weeks of being careful?  I'm not fair skinned....but I've gotten burned....

Mary -   Post tx yes. Seems to be much variance in the degree different people experience the sun/heat issues. I'm not of fair complexion either, but it was troublesome for me. The Olysio clears fairly quickly once the meds are stopped, though, so that's a plus. No evening riding during treatment? Why is that?

wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
Marypetrecz


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So good to hear about the sun sensitivity....I will be finished the S/O august 7th.  I'd like to start riding ASAP.  I can ride in the evening, once I'm finished....not allowed to ride during the meds,.. ): .... Too much a chance of injury I guess....I'm so temped though,....i really miss the outdoor activities.  Small price to pay.....

you are talking about when your finished.....not during...correct?  So maybe a few weeks of being careful?  I'm not fair skinned....but I've gotten burned....



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OldenSlow


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kurt wrote:

I'm wondering how long the sun sensitivity lasts as I'd like to start training outside. The treadmill is getting boring. 

Hey Kurt -   In my case, started to notice improvement within a couple days. Completely resolved within 2 weeks or so. Also had increased visual sensitivity to light and that took longer, but things seem normal now. Ran outside for first time about 10 days ago. Dreadmills have their uses, but enough is enough.

wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
Gator Man


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kurt wrote:

 I'm wondering how long the sun sensitivity lasts as I'd like to start training outside. The treadmill is getting boring. All the best, Kurt

 

I did not have any significant sun sensitivity issues while taking Olysio, although I started tx in early January. Almost 12 weeks post tx at this point and no sun problems. I've been running outdoors ( no more "dreadmill") and been at the pool mid-day several times over the last few weeks. No sunburns or skin irritations. I'm can't comment too much about the initial 4 week post tx period since I wasn't outside a lot, but I have had no unusual sx since then. I still have some insomnia, which is not abnormal for me regardless of tx.

Give it a couple of weeks, a hat and sunscreen, schedule your training for early morning or late afternoon and you should be fine.



__________________

Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
kurt


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 I took my last doses of Olysio/Sovaldi yesterday morning. I'll stop at the lab for bloodwork

today while I'm out. This morning was different in that I wasn't worried about the time. I actually slept an hour later. 

 I'm wondering how long the sun sensitivity lasts as I'd like to start training outside. The treadmill is getting boring. All the best, Kurt



-- Edited by kurt on Thursday 19th of June 2014 12:33:33 PM



-- Edited by kurt on Thursday 19th of June 2014 12:35:00 PM

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61 yo male,genotype 1a for 20 yrs, undetected at 4 wks on sovaldi/olysio
Caryn


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Lots of good news today!! Sara, I'm right behind you. 11 more days and I will be done! 



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1a, CT. Incivek triple 1/2013, vl 810 @ 2 weeks, 610 @ 4 weeks, 3000 @ 8 weeks, tx stopped. 

4/2014 - tx with Sovaldi/Olysio/Riba. VL 39 mil. - VL 230 @ 1 week, VL 40 @ 3 weeks, 5 weeks UND, EOT - UND, EOT @ 4 weeks UND, EOT @ 12 weeks UND!
Gator Man


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Outstanding Rybronco! Dee Dee, your good news will arrive shortly!



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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
Isiscat2011


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Hi Mary:

Off-label just means the 2 drugs are being prescribed together on an experimental basis.  

They haven't been approved by the government to use together yet--but don't worry--they will be.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Marypetrecz


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Thanks tig.  That is very helpful...and it is very confusing.  I do really enjoy this site.  It's very cooll being part of a community with a common goal.....we all want to be well.



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Tig


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Hi Mary,

I added a link to an explanation of it as well. I know, it can get confusing when all these terms start getting thrown around! We have a good reference in the Knowledge section about many of the abbreviations used here and elsewhere. If you haven't seen it, I recommend you take a look at it. They are helpful when these kinds of questions arise!

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Marypetrecz


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Duh.....lol.....I thought it was some kind of generic.....designer thing,,,,,,silly me.



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Tig


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Mary,

Off label means that it hasn't been an approved standard of care (treatment) by a licensing organization, such as the FDA. When you review the use of a drug by reviewing the "label" provided by the manufacturer, you will notice a list of purposes the drug is approved for. Since the FDA hasn't approved Sovaldi and Olysio as an approved or recognized treatment yet, the use of it for HCV as a combination together, is considered "OFF LABEL" use of it. I hope that explains it and isn't terribly confusing, lol!

http://en.wikipedia.org/wiki/Off-label_use

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Marypetrecz


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I don't know what off label sovaldi and olysio means......



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maddie


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RYbronco, just noticed that you wrote you are UND at EOT+4....that is fantastic!  Isn't it a great feeling? So happy for you.



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!..SVR 24 :-)
Tig


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Congrats Rybronco! I swear, it's almost impossible keeping up with everyone that is either Undetected, or awaiting their SVR results! These new drugs are incredible and incredibly fast acting! I'm happy for all of you and wish you the best of luck. Onward to SVR!!!

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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maddie


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Thank you all so much for the congratulations and continued good wishes.  This board is a much needed support system for me as I'm sure it is for others.  It is also, a fantastic resource filled with knowlegeable members.  Thank you again to each and every one of you.



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!..SVR 24 :-)
Peter M


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Yay Sara!!!!



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64 YO - HCV  45 years - GT 1b - F4  - starting VL 7,800,000 - AST 130 ALT 164  - started S/O 4-11-14 - week 2: - AST 37 -ALT 43 - wk 4 VL <40 - UND week 8, 12, eot, +4 +8 +12 SVR!!!  My Blog-Visit hepcstories.wordpress.com!
Dee Dee


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Thanks so much Sara! Best wishes on a healthy future!

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G1a prior tx 2005 with peg & RIBA -quit due to bad side effects. Follow up visit showed it was back. Current tx Olysio/sovaldi 673,000 vl on 3/21/14. May 1st undetected vl. EOT 12 weeks undetected!
Dee Dee


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Congrats rybronco!

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G1a prior tx 2005 with peg & RIBA -quit due to bad side effects. Follow up visit showed it was back. Current tx Olysio/sovaldi 673,000 vl on 3/21/14. May 1st undetected vl. EOT 12 weeks undetected!
Rybronco


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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!!



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49 yo. G1a prior tx 2005 with peginf and RIBA 12 weeks dc due to side effects. vl 7.8mm Current tx Sovaldi/Olysio 12 weeks started 2-21-2014,  UND at 4 weeks, EOT+12 SVR
Tig


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Congratulations Sara!! I'm so happy to hear your great news and uplifting post. I wish you continued good luck and happiness!

Tig



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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pierre


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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



__________________

HCV 1b -- detected 2011 -- pre-cirrhotic -- vl has varied from 3million to 150thou-- first tx Sovaldi/Olysio started 2.6.14. finished 4.28.14. Since 4 weeks post-tx I have been UND with liver functions back to normal. SVR at 12 weeks post-tx.
pl1952


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Such great news this Tuesday morning!  Congrats Sara!



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5
Gator Man


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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!



__________________

Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
Sara


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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 biggrin

Congrats Maddie on EOT+8. 

 



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Sovaldi/Olysio/Riba 2 week vl 16 4 week vl UND! EOT vl UND! EOT+12 SVR!  EOT+24 SVR!!

 
Peter M


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That is such great news, Maddie! Keep on keeping on!



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64 YO - HCV  45 years - GT 1b - F4  - starting VL 7,800,000 - AST 130 ALT 164  - started S/O 4-11-14 - week 2: - AST 37 -ALT 43 - wk 4 VL <40 - UND week 8, 12, eot, +4 +8 +12 SVR!!!  My Blog-Visit hepcstories.wordpress.com!
pl1952


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Congrats Maddie!



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5
Groupergetter


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Congratulations maddie, SVR, SVR, SVR biggrin 



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Barnacle


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maddie wrote:

Just got results of my 8 wk post treatment bloods....NEGATIVE for the virus!!!   biggrin  Did 12 wks S/O no Riba. 

 

 Great news Maddie!



__________________

57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!
Barnacle


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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.



__________________

57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!
Dee Dee


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Great news Maddie! biggrin. 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

__________________
G1a prior tx 2005 with peg & RIBA -quit due to bad side effects. Follow up visit showed it was back. Current tx Olysio/sovaldi 673,000 vl on 3/21/14. May 1st undetected vl. EOT 12 weeks undetected!
Fireman Rob


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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

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Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
tgcd78


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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.



__________________

Female 35, Genotype 1a - Completed the OPTIMIST clinical trial - sovalid (400mg)/Olysio (150mg) |  Starting VL 8mil, 3 day VL 300, 1 week viral load UND

SVR - November 14th. 2014!!!
maddie


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Just got results of my 8 wk post treatment bloods....NEGATIVE for the virus!!!   biggrin  Did 12 wks S/O no Riba. 

 



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Dx. 2005-liver bx.: stg 2/gr 1. at that time  - GT 1a multiple transfusions in 1981.  Started Sovaldi and Olysio 1/16/14  (No prior treatments) Q80K present.  UND week 4,8 and at EOT.   UND at wk 4EOT, Und at wk 8EOT  SVR 12!!!..SVR 24 :-)
Mike716


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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



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70-year-old male. Diagnosed HCV+ in 2008 with geno 1b. 2008 biopsy: A2/F1. Now F2+, with platelets down. No insurance, so applied for Sovaldi and Olysio patient assistance. Trying to get into a trial for 5 years with no luck.
pierre


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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



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HCV 1b -- detected 2011 -- pre-cirrhotic -- vl has varied from 3million to 150thou-- first tx Sovaldi/Olysio started 2.6.14. finished 4.28.14. Since 4 weeks post-tx I have been UND with liver functions back to normal. SVR at 12 weeks post-tx.
Mike716


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That would be very helpful, Rob.



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70-year-old male. Diagnosed HCV+ in 2008 with geno 1b. 2008 biopsy: A2/F1. Now F2+, with platelets down. No insurance, so applied for Sovaldi and Olysio patient assistance. Trying to get into a trial for 5 years with no luck.
Fireman Rob


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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



__________________

Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
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