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Hep C Discussion Forum -> Post Treatment -> Argued w/nurse to get EOT+4 scheduled
Post Info TOPIC: Argued w/nurse to get EOT+4 scheduled
Gypsy Soul


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RE: Argued w/nurse to get EOT+4 scheduled
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Thank you Jill!!

I will talk to his nurse about this...she's helped me out a lot so far.

I thought that sounded way too long to wait!



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 57 yo..Tx naive...Gen 3.. SOT 24 weeks Riba/Sovaldi...  June 20, 2015..VL 1,200,410. AST 73, ATL 85,

Fibrospect F-0, F-1

 

Kathy

 

'What if I fall?" "Oh but darling...what if you fly??"
Cinnamon Girl


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Good luck, Mike, sometimes we have to speak up for ourselves to get what we need!  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.

 

 
Cinnamon Girl


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Gypsy Soul wrote:

I am on week 16 of 24 ..Solvaldi/Riba. (gen 3) I will have this lab next week.

 My Dr. said that other than week 24 VL there will be no other labs until 6 months after tx.

because I've been undetected since week 4

Hmmmmm.........your thoughts???

 

 I think that`s far too long to wait, Kathy!  Yes, you`re responding brilliantly to this treatment, but you should have another viral load test done at 12 weeks post EOT, at least. That is now considered to be the crucial post tx result and an undetected at that point is taken as SVR (SVR12). 

You need to talk to you doctor about it!!  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.

 

 
Penelope PePod


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Will absolutely be ready for dancing!  New shoes, old shoes, no shoes!!



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65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12
Penelope PePod


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Thanks Bubble, that helps and now I'm up to speed...

I had a 4 and an 8 week VL during tx, and will have a '1 day after tx' test on Monday.  I will definitely want one 4 weeks after, and again at 12 after.  

See how much better my brain works in he morning? biggrin

P.



__________________

65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12
Penelope PePod


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It says in Tig's 1st 10/9 post, that of the folks who relapse post therapy, 77.6% do it within 4 weeks after completing therapy.  I'm going to push hard to get VL labs at 4 weeks post tx.

P.



__________________

65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12
bubble


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YES:   LET'S  DANCE !..................When's Bowie comming back around ??

 

Penny: So sorry, I shortened my signature mumbo jumbo.  I had a day after test after finishing tx, an EOT+4 weeker, and the Holy Grail of EOT's -  12 weeks.  My 8 week test that I asked for was during tx. I go back in 6 months.  You'll make and so will your husband. You got each other and thats alot.



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60 yrs. Geno1b 2001. 9mil. VL. �Failed Post Riba/Peg tx. 2006 46 weeks. Diagnosed 1A 2015(?) F3 fibr. 225k VL. Vikera/Riba 12 weeks 3/20/2015. "Undetected" start to finish. Undetected 1yr post tx.
Scruffy


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Good job Mike

They should be aware of the mind set of  patients after treatment. We need to hear that undetect.  Thing is I think treatment is now an every day "no big thing" to them with the new drugs. Like a lot of older tx ppl here I was tested for VL 4,12, 24 and 48 weeks during TX. Then 6, 12, 24 and 56 weeks post TX. On top of that I had blood every week for 41 weeks for my hb (no vl). I think hearing all those undetect's kept my spirits up.



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
Gypsy Soul


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I am on week 16 of 24 ..Solvaldi/Riba. (gen 3) I will have this lab next week.

 My Dr. said that other than week 24 VL there will be no other labs until 6 months after tx.

because I've been undetected since week 4

Hmmmmm.........your thoughts???



__________________

 

 

 57 yo..Tx naive...Gen 3.. SOT 24 weeks Riba/Sovaldi...  June 20, 2015..VL 1,200,410. AST 73, ATL 85,

Fibrospect F-0, F-1

 

Kathy

 

'What if I fall?" "Oh but darling...what if you fly??"
Gracie


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Thanks Tig, guess I'll have to go shoe shopping, good thing I love doing that! :)



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
Tig


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Come on you guys! I've already rented the dance hall and bought new shoes... This is already a planned event, so lets hear some excitement and planned celebration! You got this, remember that!!



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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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Gracie


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I'm finished December 19 and already have my Blood test apt for. January 20. I'm feeling stressed right now thinking about it. This is hard on the nerves!



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  1. Gracie

1A. Previously treated non responder Rebetron in 2000 And Incevik in 2014 with a breakthrough at week 12. Fibroscan 15.5. VL 6,000,000. Finished 24 weeks harvoni on Dec. 19, 2015. SVR. Latest Fibroscan 8.8.
MechanicMike


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Hi Penny, just to clear up your confusion regarding the mysterious "table 6", while I was on the phone with the nurse I pulled up the aalsd website (aalsd.org), and was furiously scrolling through it while talking...   I finally found the info for post-treatment monitoring guidelines in "table 6" lol!   It sure wasn't something I had committed to memory or anything, but I had been to their website lots of times. 

Heck,  I probably misreadit it, but at least Nurse Ratched bought it! biggrin



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GT 3a, 56 yo male, diagnosed 3/15/15, infected 23+ years, F3, starting VL 10+ MIL.  ALT 86/AST 45.  Started 24 wks Sov/Riba 4/13/15.  5/14/15 thru 8/31/15 Undetected.  ALT 19, AST 14.  12/31/15:  SVR12!!!  01/06/17:  1 Year SVR (WOOT!!!)
Tig


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Here's some extra info describing the probability of SVR12 and 24 following an SVR4. This references Sovaldi based protocols, but in general the consensus is that SVR4 following treatment across all protocols is highly indicative of successful treatment. While an EOT +4 test is an excellent indicator, many physicians and insurance carriers (USA) still hesitate to approve them based on either need or cost. Those providers that won't perform the EOT +4 VL, should know that the current AASLD and EASL guidelines now recommend the EOT +12 test and consider it the SVR qualifier. Considered the "CURE" baby!!

"The concordance between SVR at 4 weeks post-treatment (SVR4) and SVR12, and between SVR12 and SVR24, were determined, as well as positive predictive values (PPVs) and negative predictive values (NPVs). Overall, 779 of 796 patients (98.0%) with an SVR4 also achieved an SVR12, making the PPV of SVR4 for SVR12 98% and the NPV 100%. Of the 779 patients with an SVR12, 777 (99.7%) also achieved an SVR24, making the PPV of SVR12 for SVR24 >99% and the NPV 100%. Of patients who relapsed post-therapy, 77.6% did so within 4 weeks of completing therapy."

Concordance of sustained virological response 4, 12, and 24 weeks



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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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fourlocos


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I had to ask... for peace of mind for a couple of my blood tests.  I am getting my 9 month EOT one Nov. 3rd.  They made it sound like that will be my last one. 

 



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GT 1b first time treating with Harvoni 8 weeks.  4 weeks UND 8 week UND.  8 weeks after treatment UND.

 12 weeks SVR.  Reached 24 weeks SVR!
Groupergetter


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Mike, glad to hear you got the eot+4 labs.  As you know, if you are und at +4 the odds are very good you'll find SVR.  Hoping and praying you make it. 

Penny, the time has flown by, glad to hear you are almost finished with tx.   No doubt you'll be UND.  Looking forward to hearing the results. 



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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.
Penelope PePod


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Bubble,

No labs between EOT and +24 months?  Think that's a difference between the Harvoni and Viekira protocols?

Thanks,

Penny

 



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65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12
bubble


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Penny: My doc said to come back in 6 months. Gave me a blood work up and an ultra sound order. The Dragons effects still must be monitored. But, a +12 is said cured.  Thumbs up, you made it through!



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60 yrs. Geno1b 2001. 9mil. VL. �Failed Post Riba/Peg tx. 2006 46 weeks. Diagnosed 1A 2015(?) F3 fibr. 225k VL. Vikera/Riba 12 weeks 3/20/2015. "Undetected" start to finish. Undetected 1yr post tx.
Penelope PePod


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This thread is very timely for me.  I'll be done with tx on this Sunday evening, and have my EOT blood draw for VL on Monday. 

So next steps should be labs at EOT +4 and +12?  What about 8 and 24?  Is 12 considered cured, or is it 24?  I put "aalsd guidelines" in the search bar, but haven't found 'table 6' yet.   Taking another crack at tis this morning.  I'll see my doctor at the end of October, so that gives me a lot of time to get my ducks in a row.  

Thanks,

Penny



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65;  Dx 1997 1a; VL 1.1m; TX naïve; SOT 7/20/15; 12 wks viek/riba 1200mg

09/14/15 draw: Undetected 8 wks into tx

10/12/15 draw: Undetected at EOT

01/05/16 draw: Undetected at E0T+12
bubble


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Way to go Mike. At my EOT+8 I had a dose of "The Long Strange Trip" syndrome. My Doc said we dont really test in the middle of EOT. I insisted on it for peace of mind. I slept so much better. 4 weeks and 12 weeks are standard. I just kept getting kicked by the past (8 years prior)  with the Pegasys relapse. I was happy he gave me a script for additional blood testing. Glad you shook their tree also. Your next medal will be entry into the "Dragon Slayers Society" I am sure.   smile



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60 yrs. Geno1b 2001. 9mil. VL. �Failed Post Riba/Peg tx. 2006 46 weeks. Diagnosed 1A 2015(?) F3 fibr. 225k VL. Vikera/Riba 12 weeks 3/20/2015. "Undetected" start to finish. Undetected 1yr post tx.
wmlj1960


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Good job Mike. That's one of the first things I learned when I joined this forum - to get educated about my treatment and be my own advocate. I have, and it has paid off several times. I've sure pissed off a few nurses, doctors, lab techs, receptionist, patient advocates and probably a janitor or 2 but that's their problem. I got proper medical care and that's what is top priority. Good luck with those lab results and let us know the good news when you get it.



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Matt Chris


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Hey Mike

Your the man! Way to go, it always me proud when our forum members know more that the doctor and nurses. The words ring true again "Knowledge is power". Most of these medical people have no idea of the compassionate course for Hep-C patient. Maybe they should read about and actually talk to their patients about there worries and concerns.

matt 



-- Edited by Matt Chris on Thursday 8th of October 2015 03:26:08 PM

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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Tig


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Good job Mike!! When it's necessary you have to kick butt, take names and quote the right sources. It's amazing when the patient has to school the provider. Together we stand and divided we fall. We have to stay educated and share the knowledge! Only when it's as important to everyone, as it is to us, will this knowledge improve. Advocacy is vital!

Good luck on your upcoming test. We'll be waiting... smile



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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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MechanicMike


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Hi all,  I was EOT on 9/27.  Had no blood work scheduled,  so I called my Dr's office to see when they had my eot+4 scheduled.   They didn't, and told me I didn't need it because I've been undetected all the way through.   Long story short, I had to pull up the aalsd guidelines and read from table 6 that the test is, in fact, pretty darn important.   She scheduled it, but boy, she sure didn't want to.  Just a reminder that we are our own best advocates!  Stay informed. Don't take "no" for an answer.  I'm very, very grateful for the knowledge that all of you have passed on.  If I hadn't had the ammo, I'd have been biting my fingernails waiting for my eot+12.  



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GT 3a, 56 yo male, diagnosed 3/15/15, infected 23+ years, F3, starting VL 10+ MIL.  ALT 86/AST 45.  Started 24 wks Sov/Riba 4/13/15.  5/14/15 thru 8/31/15 Undetected.  ALT 19, AST 14.  12/31/15:  SVR12!!!  01/06/17:  1 Year SVR (WOOT!!!)
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