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Author Topic: When is SVR not SVR?  (Read 35958 times)

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Offline dragonslayer

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  • Posts: 873
When is SVR not SVR?
« on: December 15, 2014, 11:04:10 pm »
It used to be, back in the ancient days of Interferon based treatments, that SVR was defined as SVR24.  That was considered the gold standard.

But now, if what Ive read is true that SVR12 is  99.8% predictive of SVR24, is SVR12 accepted by most clinicians as reliable, or nearly as reliable, as SVR24?

Based on these numbers, the FDA has allowed drug companies to use SVR12 in the trials... Are most clinicians today also using SVR12 as the measure of cure for their patients on sovaldi based regimens?   The numbers seem to indicate that if we are undetectable at 12wks post treatment, we are cured.  Given the numbers, why is or isn't this the case?

These svr predictability number can be seen here:
http://www.journal-of-hepatology.eu/article/S0168-8278(13)60850-8/pdf
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: When is SVR not SVR?
« Reply #1 on: December 16, 2014, 02:16:55 am »
That is what my doctor is going with SVR 12 is cured.

But old habits die hard and just to be sure assuming I make SVR 12 we will check again at 24 just to be really, really sure. But yes if I make SVR 12 the odds of being anything other than undetectable at 24 are statistically very small.

Lynn

Started Harvoni 11/18/14
GT 1a
vl 2.4mil
interferon tx 3 time null responder
relapsed sov/oly 12 week tx
Grade: F4, dx 01/08
likely infected 1978
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline rainbowray

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  • Posts: 263
  • Gen 1B
Re: When is SVR not SVR?
« Reply #2 on: December 16, 2014, 08:20:45 am »
If your undetected at 4 weeks during treatment, your chances of svr 12 post treatment are best.

Offline petra

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  • Posts: 47
Re: When is SVR not SVR?
« Reply #3 on: December 16, 2014, 08:49:59 am »
 If one is still detected at their week 4 labs and their viral load has dropped significantly they should be JUST as encouraged. I was detected at 4 weeks... then undetected at 6 weeks and my labs just confirmed undetected at 8 weeks.
 [type 2, 12 weeks sovaldi and ribavirin]

I am planning a test at 12 weeks after treatment and then yearly. I am hopeful but intend to be careful.

Cheers, Petra
User Name: petra
Gender: female
Height: 5' 7" Weight: 118
Diagnosed: June 2014
Infected: unsure of when
geno type: 2
Biopsy Score:no fibro scan or biopsy
Pre treatment: 3.5 million vl, other blood work normal
TX start date: October 17, 2014
Treatment Protocol: 12 weeks of 400mg of Sovaldi and 800 mg of Ribavirin per day
Side Effects: fatigue, itchiness.

Viral load:
3.5 million at start of treatment
18 at 4 weeks
undetected at 6, 8, and 12 weeks.
SVR at 12 weeks after treatment

Offline Mike

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  • Posts: 999
Re: When is SVR not SVR?
« Reply #4 on: December 16, 2014, 09:31:45 am »
I had  a VL load taken at 12 weeks post treatment and 24. I'll have one taken at 12 months post treatment and then I'm done with it. I want this diagnoses filed way back in the "no longer an issue" part of my medical file (way, way in the back)!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline rainbowray

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  • Gen 1B
Re: When is SVR not SVR?
« Reply #5 on: December 16, 2014, 10:04:58 am »
Petra, you are correct. No reason to not continue, it is just a fact in research that at 4 weeks the percentage is a little higher for svr 12. Especially the newer treatments.

Offline Mike

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Re: When is SVR not SVR?
« Reply #6 on: December 16, 2014, 11:12:31 am »
77% of those who fail to achieve an SVR12, do so within 4 weeks post treatment, meaning that SVR4 is about 97% predictive of an SVR12.


Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: When is SVR not SVR?
« Reply #7 on: December 16, 2014, 11:24:05 am »
I did not get tested at week 4 post treatment by I bet I had relapsed by then. I am not scheduled for a 4 week post test just a 12 week post at the end of July but I am going to ask my doctor if we can check at 4 weeks to get some idea how it looks this time sooner rather than later.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline rainbowray

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  • Posts: 263
  • Gen 1B
Re: When is SVR not SVR?
« Reply #8 on: December 16, 2014, 11:43:12 am »
Lynn,
If your doc agrees, he/she is a charm. I just took my last pill of a 24 week regimen
yesterday. I took my lab last week and already know I am still undetected. I have an appointment on Dec. 18 to discuss what is next. I already have the lab report. So to make the visit useful this is my two main questions.

"SRV 4  shows 97% success at SRV 12 if undetected , so can a 4 week PCR be ordered.?"
"What options now for treatment if fail. Any trial now. What is it?"

This forum is giving great info all the time. Keep going girl.

Offline Mike

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Re: When is SVR not SVR?
« Reply #9 on: December 16, 2014, 11:45:35 am »
Most providers wont do a 4 week SVR. The numbers come from various clinical trials with a protocol to check at 4, 12 and 24 weeks. Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline rainbowray

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  • Posts: 263
  • Gen 1B
Re: When is SVR not SVR?
« Reply #10 on: December 16, 2014, 12:09:04 pm »
If my Doc does not provide, (Which I will be surprised if he does provide)..I may order my own test at http://www.healthonelabs.com/pub/tests/?
They offer at the prices below, and are very efficient.

Hepatitis C Virus (HCV) FibroSURE® - $315.75
Hepatitis C, Quantitative Real Time, PCR - $325.75

I am very proactive, but also if I survive Christmas expenses. Otherwise I just have to grimace and wait the 3 month.

Offline dragonslayer

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  • Posts: 873
Re: When is SVR not SVR?
« Reply #11 on: December 16, 2014, 01:21:47 pm »
I have an appt. with my PCP for a physical coincident with my end of treatment in mid Jan.  Are most PCPs familiar enough with viral load testing to order such a test for me? Will they do it, or would they usually defer to the specialist?  My hepatologist told me to contact him in 6 mos from my last appt when he prescribed Harvoni for me, which would approximately coincide with my 12 wk post treatment milestone, but Id rather not wait... He didnt seem anxious to have a test done before that, though, hence the question about my PCP.  Thanks.

BTW, the numbers from the Harvoni prescribing document from the ION-3 trial are so positive, to me, it almost seems as though testing for viral presence after treatment is little more than a formality:

" Among subjects with a baseline HCV RNA <6 million IU/mL, the SVR was 97% (119/123) with 8-week treatment of HARVONI and 96% (126/131) with 12-week treatment of HARVONI. "

Its not 100%, but its about as close as you can come to being sure this treatment works.   Im not saying I dont want to be tested for SVR, but if these numbers are right for the real world, I can stand the wait til my 12 wk milestone to get tested.
« Last Edit: December 16, 2014, 01:37:24 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Mike

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Re: When is SVR not SVR?
« Reply #12 on: December 16, 2014, 01:40:21 pm »

Patience  is truly a virtue and waiting 12 weeks for an SVR report is but a second for those who have had this infection for decades.

Patience my friends. Patience.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline dragonslayer

  • Member
  • Posts: 873
Re: When is SVR not SVR?
« Reply #13 on: December 16, 2014, 02:10:51 pm »
Thanks, Mike, for reinforcing the rational approach!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Rubye

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  • Posts: 130
Re: When is SVR not SVR?
« Reply #14 on: December 16, 2014, 02:19:22 pm »
I wish we had the odds for SVR at 2 weeks after EOT. I asked my doctor to order my VL at one week after eot rather than at eot and he thought that was a good idea. Im going to try and wait until 2 weeks after eot though.
The VL at eot doesn't make any sense to me. Today is my last day with S/O and I am undetected and my guess is tomorrow after eot today, I will still show undetected. But who knows what will be at one week after eot.

Offline rainbowray

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  • Gen 1B
Re: When is SVR not SVR?
« Reply #15 on: December 16, 2014, 02:33:51 pm »
Mike,
My approach is because I got the sol/riba combo, and I have seen 3 fail on this forum.
I am 1b, the ones that failed are 3 genotype. I am apprehensive because I have a little higher % to fail, so if I wait 3 months my f-3 may progress. So if I was detected at 4 weeks I would seek immediately for a second treatment.
That is my line of thinking, if I was on Harvoni I would not even think of it, really.

Offline Rubye

  • Member
  • Posts: 130
Re: When is SVR not SVR?
« Reply #16 on: December 16, 2014, 03:20:54 pm »
Because I've had Hep C for around 40 years I think it makes me even more anxious to know as soon as possible. Besides, I never have had any patience and really don't see it as that great a virtue. If you can know, or have a good idea, earlier than 12 weeks, why not find out. Just me.

Offline DesertGuy

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  • Posts: 134
Re: When is SVR not SVR?
« Reply #17 on: December 16, 2014, 05:52:28 pm »
Last night I finished 24 weeks of Sol/Rib-gene 3 -today I traveled 150 miles and saw my doctor--we had no current labs( one month old most current)---also was told today draw would  mean nothing---at todays visit  was told we would do a SVR4 as that is when I am going  to relapse If I am going to---and then a SVR12
Had to ask to please show me the differences by numbers of my livers functions, as he has never told me----and was told that I have been a difficult patient for questioning things---and that a new drug was coming to work with Sovaldi and eliminate the Riba-----so honestly I don't know when I am going to have mine checked--as of today being off of the pills is enough for me

Offline Mike

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  • Posts: 999
Re: When is SVR not SVR?
« Reply #18 on: December 16, 2014, 06:21:57 pm »
Hey Desertguy,

Congrats on getting through treatment! That was a big day for me, and I kissed the last Sovaldi and RIBV pill, before I tossed them down the old hatch, followed by 16 ozs of water.

I'm pulling and praying for you and an SVR!

Best, best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: When is SVR not SVR?
« Reply #19 on: December 16, 2014, 07:49:22 pm »
Desertguy,
You deserve kudos for completing this, you'll be feeling better soon. You still going to that resort to help detox?  Let's pray for our cure status soon.
I'm kind of spacey but otherwise still ornery as always.

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: When is SVR not SVR?
« Reply #20 on: December 17, 2014, 07:57:49 am »
Hey DesertGuy,

Congrats on making it through 24 weeks of torment. I hope you start to feel better soon and that wicked Ribv has done everything it needed to do with the Sovaldi.

Enjoy getting you back, all these meds really mess with our heads and psychie let alone the internal fight going on in our bodies. I can't wait to be off meds but I will hang in there and take them as long as I have to if it means I will be cured. I don't want to have to do this again.

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline sunrise

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  • Posts: 463
Re: When is SVR not SVR?
« Reply #21 on: December 17, 2014, 08:49:38 am »
Congradulations Desertguy
 You did it! I know for you it has been a long journey. I would hope your doc would do a 4 week vl test. How are you ast and alt and bili levels doing? When do you get your results? I have 5 more s/o to go. Get 1st vl test Monday. Brst of luck on your SVR. Have a Blessed Holiday..Sunrise

Offline DesertGuy

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Re: When is SVR not SVR?
« Reply #22 on: December 17, 2014, 09:11:10 am »
I had to ask about my levels--he was not forthcoming--he said they were good---I said tell me, compare to where I began, and he seemed bothered to tell me-----they sounded great--I did not have to opportunity to write them down
I don't get anymore results from this guy until a month away
Also pissed them off when I wanted my records so I could read the results myself
I have been sitting here for 24 weeks listening to the care others have gotten--you have numbers and doctors to talk about---so lucky---after 24 weeks the only thing this guy has given me to read or look at is the Sovaldi pamphlet that he gave to me to pitch the treatment
Thanks for listening to me bitch about my care
Good luck to you

Offline badbradley

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  • Posts: 294
Re: When is SVR not SVR?
« Reply #23 on: December 17, 2014, 09:22:15 am »

Had to ask to please show me the differences by numbers of my livers functions, as he has never told me----and was told that I have been a difficult patient for questioning things
DesertGuy, 
         You have rights to your medical records. Do not feel as though you're being a difficult patient. If it were me, I would call and nicely ask for copies of your labwork to be sent to you. I had to do the same thing. That is your right! I am interested in seeing your numbers. It seems half your stress is dealing with your Doc. Happy day when you can say SIANARA to him. Good luck on your SVR!
                                                                             Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline sunrise

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Re: When is SVR not SVR?
« Reply #24 on: December 17, 2014, 09:43:57 am »
hi desert
     I wouldn't call that bitching at all. I would be very upset if my doctor did not give me my numbers. When I go to LabCorp I always request them to send me a copy of my results. II'm sorry you had to deal with this physician he sounds like a real putz. brad is right when he tells you you are entitled to your results  that is real bullshit...excuse my French. Let us know if you find out your numbers... Take care sunrise

Offline DesertGuy

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  • Posts: 134
Re: When is SVR not SVR?
« Reply #25 on: December 17, 2014, 09:57:51 am »
Yesterday after having my blood drawn, I asked the people if the could give me my results as they had drawn my blood many times---was told no---That I would have to get them from the doctor--so---in a month after it is drawn again, and then a week later when I see the doctor---after I see him, I will walk back up front--throw down the 15 Dollars they want to print my records and make a very big  nuisance of myself in the waiting room until I leave with them---doing it now will give me incomplete records of my treatment

Offline BattleTheBeast

  • Member
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  • Female, 57 - SVR12 as of 7/23/15!!
Re: When is SVR not SVR?
« Reply #26 on: December 17, 2014, 10:02:45 am »
I get a copy of every test the next time I see the doctor, it's always printed and waiting for me but I also signed up to get my results online from LabCorp so I have my results in writing pretty quickly. It's usually 4 days but the doctor's office always calls me within 48 hours of the test so if I have it on Wednesday, I get results by Friday.

Desertguy, your doctor SUCKS and I would go to every website I could find and post about the crappy care you got. This is NOT ok and this guy is a real jerk who doesn't deserve patients.

Mel
« Last Edit: December 17, 2014, 10:04:35 am by BattleTheBeast »
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline DesertGuy

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Re: When is SVR not SVR?
« Reply #27 on: December 17, 2014, 10:30:14 am »
Calls--LOL---I asked yesterday if someone would call me in a week and give me the results of yesterdays lab. He told me--call his office in a week asking--and he would call me when he could and give them to me. If I did not call and ask--no one would even bother to call me.

Offline rainbowray

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  • Gen 1B
Re: When is SVR not SVR?
« Reply #28 on: December 17, 2014, 10:39:41 am »
Two times I asked past Liver doctors for my labs, and when they said why? and No
I said I need for personal history cause I'm not using you for my Doc. I need to show to my new Doc. And if you don't give them cause they are mine, "I paid already thru my insurance" I will probably file a complaint because withholding them is against the law. Both gave them to me withing 1 minute.
When someone bullies, they only react when bullied back. I am very, very assertive when I realize I have to be.
Not saying you should do the same, but it worked for me.
My current Doctors office prints them for me every time I visit or ask with no problem or fee.

Offline DesertGuy

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  • Posts: 134
Re: When is SVR not SVR?
« Reply #29 on: December 17, 2014, 11:00:41 am »
Rainbow--
I have been holding back learned a long time ago how to intimidate --I'm 6-2 230 and loud--after 24 weeks of this Riba crap being in control, I am going to try and mellow out--face it at this point I am in limbo anyway waiting to see if I am on of the lucky ones and this worked. I have to wait and wait and try and get my life back on track. Just turned 60--unemployed ( not really sure if I want to work anymore)--this Riba and my attitude has run of most of my aqquaintences--and this brain fog I have had for several years has caused me sell off all of my toys and lose intrest in all hobbies.
I'm not bummed--just lost. Wife tells me to do whatever I want--build new hot rod--build a new chopper--file for disability--I just need to decide, for all I know I'm going to live another 10 years now.

Offline rainbowray

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  • Gen 1B
Re: When is SVR not SVR?
« Reply #30 on: December 17, 2014, 11:20:06 am »
Desertguy,
I'm going on 65, still feel I have some good years left. I want to live them with
a decent "standard of life". No one should be able to deny that, who are they.?
The HepC stigma is like a entity that goes against you, and people utilize it for their own self without compassion. Screw them, the Stigma is a lie. You are a fine person with a virus, that is all. No different than a person with a nasty flu, except your virus needs special medical attention. It cannot be denied in my book.
Start thanking God for the answer now, before his gift of cure is even announced to you. That is faith bro.

Offline Mike

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  • Posts: 999
Re: When is SVR not SVR?
« Reply #31 on: December 17, 2014, 11:55:22 am »
Hi Desertguy,

You have a right to your lab work per HIPPA. In addition, you are actually paying for the tests, regardless of wheather or not an insurance company issues a check on your behalf. This gives you rights as a consumer (note you have to sign a specific release for the lab and doctor to bill your insurance company, which is indicative of who has control over your medical documentation).

If your doctor is part of a medical group, clinic or hospital, call the compliance officer and discuss your HIPPA rights and informing you feel they have been violated. In fact, that is exactly how I would start the conversation when you speak to the compliance officer. "I'm calling because I believe my HIPPA rights have been violated."

I would do the same with the lab handling the blood work.

I get copies of all my blood work, and have done so since the implementation of HIPPA.

Hope this helps.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Rubye

  • Member
  • Posts: 130
Re: When is SVR not SVR?
« Reply #32 on: December 17, 2014, 12:25:53 pm »
As far as this age thing goes, I'm 67 and have cirrhosis and fully expect to live another 20 years. In my state you can't get a transplant after 70 years old so I just plan to take good care of my liver and hope that the treatment drugs will lead to healing.

Mike is right. Some places make it more difficult though. Just call the Medical Records office. They may ask you why you want them and when you say to be able to see the lab results they're ask if it is okay to simply send you that portion of your records. I did this in a teaching hospital where the doctor was terrible about signing off on labs.

Offline mario555

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  • Posts: 226
Re: When is SVR not SVR?
« Reply #33 on: December 17, 2014, 12:56:01 pm »
To Desertguy. I am sorry to hear all the trouble you have in getting your results back. If you wait for the doctor to have time to call you back, you might have to wait an awful lot! For some of the doctors you are just a statistic, for us on treatment, we are 100% implicated! What I mean is although 80% will be cured ''as a group'', that doesn't relate to us individually. If we're cured it's 100%, if not it's 0%!!!
Just for my curiosity.  I am Canadian and if I'd want a blood draw, I have to get in line. Even if I'd pay $10,000, they wouldn't jump me on front of the line. Also, we cannot buy health care. It's free but we wait (health care is free but there is no help for medication...). How much does it cost in the States to get a blood draw and get your results? How much for a virus level? I will be in Florida in January and might be interested to go to a lab that does this type of work.
Just for your information, I'm turning 60 soon, don't know if I want to keep working, have lots of hobbies and like you, I seem to have an understanding wife. Lucky for us......
60 years old. Likely infected 1975. Geno 1a
F4  8 millions VL,  AST 140  ALT 140
Generally in good health except problems are creeping up rapidly!
2 failed attempts Inf 2000 and Inf-riba 2010
Harvoni 24 weeks
Start 11/13/2014   EOT 4/27/2015
VL2 - UND
VL4 - UND (may 25)
VL12 - UND
VK24 -  UND
Hopefully cured forever!

Offline Mike

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  • Posts: 999
Re: When is SVR not SVR?
« Reply #34 on: December 17, 2014, 01:09:05 pm »
Hi Mario,

In the US, prices can vary depending on location and can be negotiated with the service provider. Oftentimes, discounts will be given for cash payment at the time of service.

In addition, medical requirements can vary state-by-state, as state medical boards regulate practices. For example, in Ohio, a person needs a perscription from a medical doctor to participate in physical therapy, which isn't the case in other states.

Since you will be in the states, I would recommend that you contact some labs in the area you will be visiting and discuss the requirements. How much is the blood draw and what is the cost of a HCV RNA quantitative test? Will I need a prescription and so on?

In doing this, you'll learn what you need prior to the visit and can prepare accordingly.

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: When is SVR not SVR?
« Reply #35 on: December 17, 2014, 01:11:26 pm »
Labcorp is also the place that does the FibroSure test, not sure of the cost but that might be another one you want to get.

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline jayme1017

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  • Posts: 11
Re: When is SVR not SVR?
« Reply #36 on: December 17, 2014, 02:07:09 pm »
New here. I was wondering how a SVR12 means cured when I have read about folks whose virus returned 9 months later after a period of SVR? confused
Started Harvoni 12/8/14; approved for 8 weeks; Diagnosed late 90s; Type 1a, ALT 112, AST 80; Fib .48, F2;
VL 1,200,000

Offline Mike

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  • Posts: 999
Re: When is SVR not SVR?
« Reply #37 on: December 17, 2014, 04:08:05 pm »
Hi jayme1017,

HCV is an RNA virus and must replicate itself to survive. If the virus is killed faster than it can replicate (which is how the new medications work), it can be eradicated entirely. Once the virus is eradicated (no longer detectable), the person is deemed cured after a defined period of time (sustained virological response/SVR).

The SVR period is a time set after treatment is completed. If the person remains virus free (undetectable 3-6 months after treatment has ended = SVR12 or SVR24 respectively), the person is declared cured.

Because the HCV replicates quickly,  if any viruses survived the treatment, the virus would become detectable within 3-6 months.

To answer your specfic question: There is a very, very small percentage of individuals who achieve an SVR24, and test positive for HCV after this threshold (at 9, 12+ months post-treatment). Although this type of relapse is very, very rare, it does occur.

The prevailing wisdom and research indicates that this is due to false negative test results used to determine an SVR24 (mistakes at the lab do happen), or the person was reinfected (which also occurs). I ascribe to this theory.

Hope this helps.

Best wishes, Mike
« Last Edit: December 17, 2014, 04:15:07 pm by Mike »
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline zeena

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  • Posts: 114
Re: When is SVR not SVR?
« Reply #38 on: December 18, 2014, 12:52:56 am »
congratulations desert guy. you toughed out a rough ride. i must say, my post riba brain feels pretty good.not reactive like on medication.and a lot more confident about who i am. yep, we came out the other side of this riba wormwhole and it feels good.
has anyone heard from hepc53? her labs should have been done if she was getting 4 weeks post treatment

Offline Lynn K

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  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: When is SVR not SVR?
« Reply #39 on: December 18, 2014, 03:16:44 am »
I guess I am wanting the 4 week test if my doctor is willing to is because I relapsed after 12 weeks of Sovaldi Olysio even though I was undetectable at week 4 on treatment and at EOT. But at week 12 post I was found to have relapsed.

Also since I have F4 cirrhosis with esophageal varicies and some ascities if we knew sooner that I had relapsed again hopefully I could start Abbvie 3D combo 2 months sooner rather than waiting two months while my liver is again under attack.

So that is my thinking  about the value of testing someone in my situation at 4 weeks post
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline badbradley

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  • Posts: 294
Re: When is SVR not SVR?
« Reply #40 on: December 18, 2014, 09:15:30 am »


So that is my thinking  about the value of testing someone in my situation at 4 weeks post
Agreed.   That is my thinking as well. Since my situation is not dire, I decided to ride it out to the 12wks. post treatment point. Would definitely do the 4wk post test in your situation. Best to you.      Brad
Geno 1a
Sov/Oly 12wks - relapse
Har/Riba 12wks
Alt-16  Ast-17 SVR - 12
Alt-15  Ast-14 SVR - 24

Offline JillLynn

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  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: When is SVR not SVR?
« Reply #41 on: December 18, 2014, 12:08:57 pm »
Desert Guy.....do you get your blood drawn at a hospital or lab affiliated with one?

I get my medical records posted on "my chart" with both hospitals in my area.   I always see the results before my doctors because obviously I'm more interested in me than they are.

The labs I had years ago were all updated once I did the "my chart" thing.  It's been great for me because I too, like to see my labs and look over results.

Just thought I'd share this.  Jill

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: When is SVR not SVR?
« Reply #42 on: December 18, 2014, 01:52:11 pm »
Well I am pleasantly surprised, went to the Dr. for end of treatment visit.
I knew I was already still undetected, but my Rheumatoid Factor count went way down, and seems to be going away. My neuropothy in my feet is improving too.
The best is when I asked if I could take the Viral Load at 4 weeks post treatment, he agreed that it is a great idea. So I can get status in a month now. He ordered the
Rheumatoid Factor count also, as he seemed very interested.(It went down from 1000 6 months ago. So asking is not a bad idea. We discussed a plan of action if I do relapse, and made an appointment for that status at end of January. I felt very good, cause he will order the next treatment immediately if needed.  (There is some light in this world, and it feels good)

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: When is SVR not SVR?
« Reply #43 on: December 18, 2014, 02:24:09 pm »
Great news Ray!

Praying for you and all the rest of us!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline jayme1017

  • Member
  • Posts: 11
Re: When is SVR not SVR?
« Reply #44 on: December 18, 2014, 03:03:00 pm »
thanks Mike!
Started Harvoni 12/8/14; approved for 8 weeks; Diagnosed late 90s; Type 1a, ALT 112, AST 80; Fib .48, F2;
VL 1,200,000

Offline Mike

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Re: When is SVR not SVR?
« Reply #45 on: December 18, 2014, 03:42:53 pm »
Great news, Rainbowray!

Sounds like the doctor is working with you and listening!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline Mike

  • Member
  • Posts: 999
Re: When is SVR not SVR?
« Reply #46 on: December 18, 2014, 03:44:34 pm »
BattleTheBeast,

Your avitar crackes me up everytime I see it!

Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: When is SVR not SVR?
« Reply #47 on: December 18, 2014, 04:23:46 pm »
BattleTheBeast,

Your avitar crackes me up everytime I see it!

Mike

Then it's perfect because we all need to smile way more! It's good for our spiriti!

Mel
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline JillLynn

  • Member
  • Posts: 205
  • contracted 1973/ peg/rib 1999 & 2004/on harvoni
Re: When is SVR not SVR?
« Reply #48 on: December 18, 2014, 05:03:06 pm »
"There is some light in this world, and it feels good" amen to that Ray!

Really Great to hear your news!   


Jill

Offline Roger

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  • Posts: 171
Re: When is SVR not SVR?
« Reply #49 on: December 21, 2014, 04:11:42 pm »
If my Doc does not provide, (Which I will be surprised if he does provide)..I may order my own test at http://www.healthonelabs.com/pub/tests/?
They offer at the prices below, and are very efficient.

Hepatitis C Virus (HCV) FibroSURE® - $315.75
Hepatitis C, Quantitative Real Time, PCR - $325.75

Thanks for this information!
This is a great website and service for all of us who want what we want - when we want it!

Thanks for posting it.
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline Roger

  • Member
  • Posts: 171
Re: When is SVR not SVR?
« Reply #50 on: December 21, 2014, 05:44:50 pm »
Two times I asked past Liver doctors for my labs, and when they said why? and No
I said I need for personal history cause I'm not using you for my Doc. I need to show to my new Doc. And if you don't give them cause they are mine, "I paid already thru my insurance" I will probably file a complaint because withholding them is against the law. Both gave them to me withing 1 minute.

Rainbowray,
Good advice!  I learned a bunch of tricks 12 years ago with a nasty bout of Kidney Cancer.  I learned that those of us who are assertive & tenacious (not rude or abusive)
live longer. Fact!

I always get my blood, urine, ct's radiologist reports, MRI reports, etc, etc.  It is far easier for me to read (maybe re-read them!) in private and ask questions if needed vs just listening to the doc. 

Do the docs like it? Who cares?  The good doc's don't mind!
 
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: When is SVR not SVR?
« Reply #51 on: December 22, 2014, 09:40:16 am »
Roger,
The Comprehensive Health Profile for $59 is dynamite deal. You get a great overall
picture.
Thanks

Offline Roger

  • Member
  • Posts: 171
Re: When is SVR not SVR?
« Reply #52 on: December 22, 2014, 12:20:54 pm »
Rainbowray,
I originally forgot to ask 'how' one goes about getting the blood draw 'without' a doctor's order?  I once asked at Quest Diagnostics and they told me that a doctor must give them a professional order before they will do a draw...
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: When is SVR not SVR?
« Reply #53 on: December 22, 2014, 12:26:37 pm »
Evidently, a doctor signs off on your order and it is ok. It is contracted with labcorb.
If you try to use the site, make sure a Labcorb lab is near you before paying.
Print out the order, and the lab knows what it is, and just draws the blood.
I have used it about 4 times and I get the results via email in 2-3 days.

Offline Rubye

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  • Posts: 130
Re: When is SVR not SVR?
« Reply #54 on: December 22, 2014, 11:24:02 pm »
Interesting Rainbowray. I didn't know you could do this with the labs. Does that price include a viral load?

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: When is SVR not SVR?
« Reply #55 on: December 23, 2014, 10:37:59 am »
Interesting Rainbowray. I didn't know you could do this with the labs. Does that price include a viral load?

Viral Load=$325.75
FibroSure=$315.75

http://www.healthonelabs.com/pub/tests/?

Offline Rubye

  • Member
  • Posts: 130
Re: When is SVR not SVR?
« Reply #56 on: December 23, 2014, 12:33:58 pm »
Makes me grateful I have a good doctor who tests when I ask him to pretty much. However, this is really great for people who don't have insurance. Thanks for the info.

 


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