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Hep C Discussion Forum -> On Treatment -> Solvaldi/Olysio 4 week mark -- not undetected - sad :(
Post Info TOPIC: Solvaldi/Olysio 4 week mark -- not undetected - sad :(
Omnamahshivaya


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RE: Solvaldi/Olysio 4 week mark -- not undetected - sad :(
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Thank all of you positive supporters! Can't tell you enough how you immensely put my worries to ease. In fact, I have an extra prescription to take another viral load and I'm waiting a little longer. I'm into the first week of the second round. I may take it next week.

I agree - I trust now. Obviously it's working. It's just finding the remaining critters that are hiding in my other organs and tissues. They're almost all gone!

On another good note, after many phone calls, Accredo finally delivered my meds a month early and will only charge me the same low co-pay that my other (good) pharmacy was charging. so my worry was for naught!

my recommendations for this week:

Ketogenic Diet

and

"The Untethered Soul" book by Michael A. Singer

 

Love to you guys! Perfect Health to us all!



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OMJ - started treatment April 25, 2014

Prior to treatment VL 14 million. Liver Levels Abnormal but under 70.

Sovaldi/Olysio

VL: SOT = 14 million.    SOT +2 weeks = 28

AST/ALT: Normal

Week # 7 = UND
Marypetrecz


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Thanks oldeslow,....I think she was stressing a point.  I hope to fly through this and be fine.



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Groupergetter


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Audreyanna wrote:

I got my viral load results back after four weeks of treatment with sovaldi/olysio. I went from 1-1/2 million down to 15. If it had been 14, it would be considered undetectable, I guess. I was a little disappointed but she assured me not to be. It's just that I failed interferon/ribaviron twice so have this awful feeling that I'm not curable. Anyway, I go back for another test in 4 weeks. Hope it's gone by then.

Hi Audrey, don't worry about this.  I had the same concerns as you.  My vl was 16 at 25 days.   Did my labs a couple of days early because of a Dr. appt.  You'll be fine, next draw will show undetected and you'll remain that way.  Enjoy the day. 



__________________

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.
OldenSlow


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Hi Mary,

There shouldn't be any problem re-treating with the Sovaldi. The Olysio would be another matter. You would want to move to a different class DAA for 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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Are the rounds continuos?  The doc just told me yesterday that they can't be used once you stop.  Maybe I misunderstood.....hopefully i did....I will ask again when I see her.  I was surprised when she told me that. When I get caught off guard I don't do follow up questions, but it made sense to me when she said it.  Maybe she's just stressing a point, but my daughter the RN was standing there when she said it.



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Isiscat2011


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Marypetrecz wrote:

I was also told that we can't do any more than one round...because our bodies can develope anti bodies and stop the ability of the meds to work after we stop using them....so they say 3 months....and that's what it takes....

I have read the opposite--that Sovaldi and some other DAAs can be repeated-- I think the issue is RAVs not anti-bodies but similar idea.  

We have a member who is on his second round of Sovaldi and Ledispavir.  First round was 12 weeks; second round is 24 weeks.  



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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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I'm in my 3rd week of sovaldi and olysio....and I've read a lot of the threads here. I talked to my doctor about being udt at 4 weeks and having to stay on the meds for 3 months. I was told that hep c can hide in other organs and this assures everyone that the med combo has done it's job...after clearing the liver I guess it goes on a hunt and destroy mission,,,, I was also told that we can't do any more than one round...because our bodies can develope anti bodies and stop the ability of the meds to work after we stop using them....so they say 3 months....and that's what it takes....so I wouldn't be disheartened about such a low count...even thought it's not undectable it's is working and will rid your body of the disease. I am big on positive mental reinforcement. So visualize the meds working like a little army....make a med friendly environment to take the task of killing the bad guys...
Stay positive and hang in there. You will be fine......you have a team around you to help keep your spirits up.

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Audreyanna


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Man, thanks you guys. So great to have this forum and all the caring, informative people on it.

I'm just so tired of worrying about this liver and what I can and can't do! It will be so great when this treatment works. Then the drug companies can start finding therapies to repair all the scarred livers! Lol. I see there are some drugs in the pipeline. I didn't think they would ever come up with the cure with all the big money generated by this disease and all the failed treatments. 

Thanks everyone for all the words of encouragement. I may mention to my dr. how Oldenslow extended his treatment.  I'm surprised the insurance company went for that. 

Ok, I have plenty of fun things to get into, starting with a barbecue today, so I'm going to start preparing for that and stop thinking and analyzing this treatment. I'm going to just assume I'm cured!

Have a great day, all!



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Audrey

 

55 y/o, GT 1A, 1.4 million UI, cirrhosis, low platelets, enlarged spleen, high LFTs. Failed tx x2. 12 weeks Sovaldi/Olysio. Undetected end of treatment and 4 weeks after EOT!
js


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I understand your disapointment.  went from 13 million to 167 at week 4.  I too was hoping for UND but I know this therapy is working and being a difficult patient with stage 4 cirrhois and a transplant 15 years ago it is taking a  little longer to wipe out the little buggers. I was down about it for a spell, but have to keep a positive attitude.  I know at week 12 and EOT I will be UND.  I will win this battle.  And so will you.  Hang in and think positive. 



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HCC- transplant 1999  Non respnder interferon/riba and peg interferon/reba,

sovaldi olysio eot 7/3/14 UND +12 64 yo male infected 1970 blood xfusion -xplant infected almost immediately after xplant currently cirrhotic. 
Turnsit


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I totally agree with your feelings on this, if I had to do another round after 12 weeks, I would go for it, they are causing my liver to function well again. I have had this 42 years, I am 62. Best wishes...



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A. M. Turner
Turnsit


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Hang in there, I have great amounts of cirrhosis, was almost on transplant list but now my liver is functioning again remarkably well. I have had geno type 1 for 42 years! I do not know yet if I am undetectable, its been less than two weeks but whatever, the drugs solvaldi and olysio are making my liver function well now, one day at a time, time tells all. Best wishes...



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A. M. Turner
Tig


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Hi Audrey,

Don't over analyze, it'll keep you awake and solves nothing. You're right about the existence of statistics on relapse here on the forum. There are none because the protocol is so new and your group and those immediately before you are just now completing treatment. So any statistics that exist would be those online pertaining to the trial results. The member that was/is on the 16 week tx is "Oldenslow" aka Wayne. His treatment length if memory serves me right was a decision made by him and his doctor, not because there is an established protocol calling for 16 weeks. The decision to do that would be a concert between you, your doctor and your insurance carrier. 

Take a break and let your mind rest. I believe all will be fine and the best thing you can do is to relax and not read too much into it. Sometimes all the research and reading can be a morale breaker instead of the boost you set out to find. It's not because you're finding unhappy or unsettling information, but it may be that you're not finding what you're looking for or you're not understanding what you're reading. Too much information tends to be confusing, so give yourself time to digest what you already know and forget what you don't. One day at a time, okay? 

Tig



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Tig

68yo 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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Audreyanna


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Thanks everyone for all the input and encouragement. I get viral load tested again in 4 weeks and then dr. appt. shortly after that. I think I will ask if I should be on it longer, being cirrhotic and previous non-responder. Someone on here was on this tx for 16 weeks for that reason, as I recall. I go to University of Miami so I would think they know what they're doing but maybe are so busy with the probable influx of patients coming in now that they just put me on the standard 12 weeks. I think I'll ask anyway. Don't want to relapse! 

Do we have statistics on this forum for how many did relapse, if any? I know it's all probably too soon. I'm just wondering what the small percentage of patients that didn't reach undetectable or relapsed had in common.  Probably cirrhosis? Ahh...not going to over analyze it and have another sleepless night. I'm thankful and hopeful. No need to worry, as you say. Thanks again, everyone. Goodnight.



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Audrey

 

55 y/o, GT 1A, 1.4 million UI, cirrhosis, low platelets, enlarged spleen, high LFTs. Failed tx x2. 12 weeks Sovaldi/Olysio. Undetected end of treatment and 4 weeks after EOT!
mallani


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Sorry to be pedantic, as usual, but this is just for the Members whose Labs use the old Version 1 PCR test.

The LLOQ was indeed 43, but the LLOD was 8-12 depending on the dilutions. Therefore a VL of 15 would have been reported as <43 Detected (or Target Detected).  It's interesting that the high sensitivity VL tests like Heptimax (LLOQ-5) are not more popular. I guess extra cost is the issue.



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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
Tig


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Hi Audrey,

I wouldn't be concerned about the remaining 15. You've had an excellent 4 week response and I'm positive you'll be UND when your treatment is finished. Even though it's a morale booster for people to see a 4 week UND, I've seen several people not be UND at week 4 and UND at week 6, 8 for sure. I'm beginning to see why they arent doing an early VL test and it's for this reason. Instead of a big morale boost, now because they choose to do an early test, you've experienced a let down instead. I think if they want a mid course VL, it should be done at week 6. The results overall for a Sovaldi backbone Tx is very high and these frequent VL's can be just as disappointing as exciting, if they're done too early. Try to relax and be confident that you'll be right where you hope to be when Tx is finished. Good luck...

Tig



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Tig

68yo 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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AngieV123


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By the viral drop...you know it's working & it WILL wipe out those last 28 in a matter of days, I bet. If it hasn't already since your last labs. I know it's hard not to feel a little let down but I think you are well on the way to UND.

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Type 1a. Had HCV my entire life via blood transfusion. Did peg & riba in 2000, relapsed. Did triple tx with sovaldi in early 2014 & I am now undetected 
Audreyanna


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I got my viral load results back after four weeks of treatment with sovaldi/olysio. I went from 1-1/2 million down to 15. If it had been 14, it would be considered undetectable, I guess. I was a little disappointed but she assured me not to be. It's just that I failed interferon/ribaviron twice so have this awful feeling that I'm not curable. Anyway, I go back for another test in 4 weeks. Hope it's gone by then.



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Audrey

 

55 y/o, GT 1A, 1.4 million UI, cirrhosis, low platelets, enlarged spleen, high LFTs. Failed tx x2. 12 weeks Sovaldi/Olysio. Undetected end of treatment and 4 weeks after EOT!
jimbob


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Taz --
My GI didn't want to test unti week 12 too. He argued that 99% of his patients on this tx were UND in 12. So, that's the good news.

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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.
TazKat


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I wish I could have a load test to help my anxiety. but have to wait 7 or more weeks. cry



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
robertsamx


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Omnamahshivaya, I was a late bloomer also.  I was disapointed when i was not und at 4 weeks, they were talking about taking me off treatment, but a two week later blood draw went UND. So hang in there, you droped so fast and so so much,  UND is in the works for you.  You  will beat this.  keep us informed  RC



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 M-68, 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   
Cinnamon Girl


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Hi J, Tig is absolutely right, in fact up until recent times certain viral load tests weren`t sensitive enough to quantify an amount below 43, and in fact some labs still use that test, so by that measurement you would have been Und by week 2!  You don`t need to be disappointed, you`ve had a huge drop in viral load in a very short space of time and your treatment is working very well! 

Trust your doctor and we`ll look forward to more good news on your next result!  smile

 

 



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Jill 

(71 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.

 

 
Omnamahshivaya


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smilesmile thank you 



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OMJ - started treatment April 25, 2014

Prior to treatment VL 14 million. Liver Levels Abnormal but under 70.

Sovaldi/Olysio

VL: SOT = 14 million.    SOT +2 weeks = 28

AST/ALT: Normal

Week # 7 = UND
Isiscat2011


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Omnamahshivaya wrote:

He was also kind enough to write me an extra script to get a viral load test next week instead of in a month if I need peace of mind. :)

That's a good sign too.  He must be pretty confident that another week will do it.  

Tig makes a really good point about the sensitivity of the new tests.   Where you are at now would already be considered UD under less sensitive testing methods.  



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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.
Omnamahshivaya


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Thank you so much for your encouragement Isiscat. Yeah it's a minor let down and a little confusing, but I trust the process and like my doctor said, he's certain the next test will show UD. crossing fingers. He was also kind enough to write me an extra script to get a viral load test next week instead of in a month if I need peace of mind. :)



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OMJ - started treatment April 25, 2014

Prior to treatment VL 14 million. Liver Levels Abnormal but under 70.

Sovaldi/Olysio

VL: SOT = 14 million.    SOT +2 weeks = 28

AST/ALT: Normal

Week # 7 = UND
Omnamahshivaya


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Thanks Tig! Sure appreciate it. Confused why a few stubborn ones could remain when nearly all of them were knocked out so quickly immediately. But I think that shall remain a mystery.... you are very wise and my doctor confirmed what you said that he's certain it will be UD by next testing: he ordered me an extra viral load test to take for peace of mind in a week, but I can wait four weeks if I want to. I probably will take it for peace of mind. Thanks again for your encouragement and support.



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OMJ - started treatment April 25, 2014

Prior to treatment VL 14 million. Liver Levels Abnormal but under 70.

Sovaldi/Olysio

VL: SOT = 14 million.    SOT +2 weeks = 28

AST/ALT: Normal

Week # 7 = UND
Isiscat2011


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That's ok, Omna.  Just a few stubborn ones left but they will take the hint as all their little friends leave.  You are getting great results.



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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.
Tig


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Hi J,

Don't be disappointed, okay maybe a little, but this is great news! You had such a huge (multi log) drop in viral load, that by itself is a big success! Shoot, last year both the 28 and 15 would have been considered undetectable because the test sensitivity didn't go that low. So consider yourself well on your way to undetectable and I'm going to bet that by the next test, two weeks I suppose, you'll be UND. Be positive, and stay to the plan, it's working and working well. Your high VL was knocked to it's knee's, next time it'll be knocked out!! Hang in there and good luck....

Tig



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Tig

68yo 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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Omnamahshivaya


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I have a AMAZING doctor so I know i'm in great hands... but couldn't help but be mildly disappointed to find out I still am not UD even though nearly everyone in this forum seems UD on this protocol by the 4 week mark. In just two weeks I went from 14 million to just 28. not 28 million, just the number 28. And in two more weeks after that I went down only to 15.  So I'm a bit stumped but I trust my doctor so I'm sure I'll get UD soon enough. I think I just expected another major drop since the initial 2 weeks of treatment going from 14 million to 28 was mind-blowing. Maybe it's because I started with such a high VL that it's just being resistant at this point? Or maybe I took the test the day before the exact 4 week mark? Who knows. I'm grateful just mildly dissapointed but certainly can't complain and am exceedingly grateful for my treatment, my doctor and this cure. 



-- Edited by Omnamahshivaya on Friday 30th of May 2014 06:16:36 AM

__________________

OMJ - started treatment April 25, 2014

Prior to treatment VL 14 million. Liver Levels Abnormal but under 70.

Sovaldi/Olysio

VL: SOT = 14 million.    SOT +2 weeks = 28

AST/ALT: Normal

Week # 7 = UND
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