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Post Info TOPIC: Checking in
Canuck


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RE: Checking in
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Hi HR,

Thnaks for letting me know your "current" ALT of 120 and AST of 85 - what date was that drawn and were there not any other labs drawn aside from those 2 tests??

You say your situ has been put on the "back burner" for a while, but did your doc(s) not request you to return for regular periodic follow-ups?? Surely you are on their auto-matic "call-up" radar, being that you have 2 prior failures under your belt. Is Dr. Lawitz your "one and only" hep doc who is following you? If so, i am suprized you have not already been called in for reassessment and/or for further recommended regimes for you.

Have you not ever had a simple fibroscan?, or abd. ultrasounds/cat scan, to help ascertain your old, or, current levels of fibrosis/cirrhosis?? Only one biopsy was ever done to assess you, and that was only prior to your first 12 week treatment? Without ongoing labs, imaging, and good communications with your doc(s), how can you know where you are at. I guess this all goes without saying.

I do hope you are trying to keep good account and records of any of the labs/tests you have accumulated over these 2 treatment periods, they are valuable info, and would be helpful here for clearer discussion purposes.

You do need ongoing follow-up and assessment, you do need answers to your questions regarding what your next treatment regime should be, you do need to get back to your doc (or docs, if you have more than one hep doc involved),  to help you work on and through all the important variables.

For what it is worth - here is a thing on RAV's - RAVs.pdf (595.1 kb) - even though it is just from mid-2016, it is "old" now - of the many regimes it mentions, it notes some of the first ION trials (starting on page 75 and Table 3 and on). As well, are some of the sof/vel trials, NS3/4A "VOX" (voxilaprevir) is not covered "by name" in this (VOX here, is refered to by it's former name "GS-9857"), which is destined to be coming out, as a sof/vel/vox triplet expressly for relapsers "sometime" in 2017. There are also other drugs being worked on, new 5A and B's and combo's, that are also not mentioned in this older RAV thing.

Do fill us in more on your labs (what you can) to show how damaged or good your liver is. I hope you get some new treatment direction/decision soon. Since 2014, that is a fair while you have been trying, waiting and on the "back-burner" now.

I'm glad to hear you are not feeling too bad tho, and thinking about re-treatment! smile C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
Tig


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HR,

I'm curious to know more about your 24 week retreatment. Did they follow the RAV protocol in the second arm and what were they? They usually advise you of those variants upon failure. Did you use a secondary rescue drug? If you could tell me a little more about your two ION 3 failures, it would help me understand your journey. 36 weeks of Harvoni without success must be disheartening. Good luck with this...



__________________

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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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JimmyK


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HR wrote:
JimmyK wrote:

Greetings,

 

I cannot tell from the signature. Did you relapse on both the 12 and 24 weeks?

JimmyK

 Yes I did 12 weeks and relapsed and then they retreated for 24 weeks and I relapsed on both.

 That makes you by far the most "unique" person here.

 

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
HR


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Canuck wrote:

Hi HR,

Welcome back here again.

I'm sorry for your troubles. I am sorry you got so close, twice, only to be dissappointed. But there are some really good drugs out there for people now, it is simply a case of finding the right combo for you. 

I was wanting the same clarification as Jimmy about the 2 tretaments I think you have had done.

Skimming your other thread I saw you are a GT1A, and pieced together that you completed your first 12 weeks of Harvoni, and then relapsed 12 weeks after EOT? Then they gave you 24 weeks of Harvoni as your re-treatment, and again you relapsed after EOT, but I not sure how long after?

I did note from your other thread that you were going to try to delve into various reasons for this with various docs re: these relapses. Mallani asked about your IL28B testing and whether you knew if you were a CC, CT, or TT. Others queried the subject of resistance testing, and how fibrotic/cirrhotic you may be. Did you get any further ahead on gaining further answers on any of this?? What have your docs said about RAV's, and what are they suggesting to you?

Have you had a recent fibroscan?? I am trying to guage your current F status, aside from what you noted in your sig. line. How are your labs? Did you gain any improvement in your F scores after these ledi tretaments?

More info to go on would be good. C.

 

 The second time I treated I relapsed aT my first EOT test . I think it was 4 week EOT. 

My Alt/ ast now is 120/85. I feel fine bu I know at some point I need to try to beat the virus. Haven't gotten a biopsy since Dr. Lawitz did the one before my first treatment. 

I did not go get further testing done after treatment. I kind of put it on the back burner for a while I guess. I pobably need to go make an appointment with Dr Lawitz and see where we are at.



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
HR


Senior Member

Status: Offline
Posts: 158
Date:
Permalink  
 

JimmyK wrote:

Greetings,

 

I cannot tell from the signature. Did you relapse on both the 12 and 24 weeks?

JimmyK

 Yes I did 12 weeks and relapsed and then they retreated for 24 weeks and I relapsed on both.



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
Canuck


Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Hi HR,

Welcome back here again.

I'm sorry for your troubles. I am sorry you got so close, twice, only to be dissappointed. But there are some really good drugs out there for people now, it is simply a case of finding the right combo for you. 

I was wanting the same clarification as Jimmy about the 2 tretaments I think you have had done.

Skimming your other thread I saw you are a GT1A, and pieced together that you completed your first 12 weeks of Harvoni, and then relapsed 12 weeks after EOT? Then they gave you 24 weeks of Harvoni as your re-treatment, and again you relapsed after EOT, but I not sure how long after?

I did note from your other thread that you were going to try to delve into various reasons for this with various docs re: these relapses. Mallani asked about your IL28B testing and whether you knew if you were a CC, CT, or TT. Others queried the subject of resistance testing, and how fibrotic/cirrhotic you may be. Did you get any further ahead on gaining further answers on any of this?? What have your docs said about RAV's, and what are they suggesting to you?

Have you had a recent fibroscan?? I am trying to guage your current F status, aside from what you noted in your sig. line. How are your labs? Did you gain any improvement in your F scores after these ledi tretaments?

More info to go on would be good. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)
JimmyK


Guru

Status: Offline
Posts: 1839
Date:
Permalink  
 

Greetings,

 

I cannot tell from the signature. Did you relapse on both the 12 and 24 weeks?

JimmyK



__________________

Harvoni TX 2 12 weeks. UND weeks 4, 12 and now EOT + 4 Weeks. SVR-12 09/29/16. All Glory, Honor and Thanks be to God.

"I go to war with the brothers I trust."
Tig


Admin

Status: Offline
Posts: 9284
Date:
Permalink  
 

Hello,

Sorry to hear about the relapse. It happens, but it's not much fun to be one of those people in that small percentage. There are a number of treatments that are being used and reused when Harvoni tx fails. Often they choose to prescribe another 24 weeks of it for those doing 12. You may have to move on to another drug entirely. Depending on your current fibrosis level >F3, they might add Ribavirin to one of the newer DAA's. Abbvie and Merck have new drugs and Gilead has Epclusa with/wo Voxilaprevir. They're constantly in R&D, so things are happening fast. What absolutely must be done first is to determine what RAV's you developed from the failure. If you don't do that, you're limiting your chances the next time, by not zeroing in on exactly what is required.

Here's some light reading for you. wink You may have researched this already, if not, it's full of good information on what's available. I'll try and answer any questions you may have. 

Retreatment Guidelines



__________________

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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 
HR


Senior Member

Status: Offline
Posts: 158
Date:
Permalink  
 

Hey guys

Haven't been on here in forever and decided to stop back by. Any new treatments out there for Harvoni relapser's? 

Thanks

 



__________________

ION-3 Trial- Sofosbuvir/Ledipasvir 12 weeks.. UND 4 weeks, relapsed 12 week EOT. 

3-4 on Ischank scale

 

Retreat ION-3 Trial- Sofosbuvir /Ledipasvir 24 weeks

GT-1 (1-31-14) Week 1 VL 62 -Week 4,8,12,16,20 UND EOT 7-18-14
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