Hard to treat Gt3 - Another stage of the journey

This topic has 71 replies, 33 voices, and was last updated 8 years, 3 months ago by Paul-Jarman-facebook.

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11 July 2016 at 11:57 am #20799
Gaj
- Topics: 29
- Replies: 1,402
- Total: 1,431
- Guardian Angel
@gaj
I recently visited my clinic to review my SVR6 bloods and latest CT scans, unfortunately the specialist tells me that the virus is detected again. Definitely not the news I was hoping to receive.

The question now is “where to from here?” At the moment the suspicion is NS5a associated RAVs which would mean a repeat of the same treatment may not work even if extended longer than my recent 24 weeks. Apparently the current work on GT3 related RAVs is limited so I’ve supplied blood samples to see if the scientists can put together some local research and hopefully determine which variant(s) may be involved. If successful this may assist the treatment decision process for myself and others in future but they think it will be at least early August before they have any results. Until then I’ll be keeping an eye on generic Velpatasvir/Sofosbuvir treatment availability and suitability. In the meantime I will do what I can to protect my liver including remaining on a low carb diet with no alcohol plus regular daily exercise. I’ll update here as my retreatment plans progress.

The good news from my visit was that my CT scan and AFP tests both look fine so that was a relief. Also, since mid Nov 2015 when access to generics allowed me to commence treatment my overall health and quality of life has improved in so many ways. I’m extremely grateful to Dr Freeman and the rest of the FixHepC team for providing me with that opportunity.

G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
11 July 2016 at 1:11 pm #20802
LondonGirl
- Topics: 16
- Replies: 1,348
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- Guardian Angel
@londongirl
Dear Gaj, I am so very sorry to read this.
BIG
LG

GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
11 July 2016 at 1:58 pm #20803
sabrecat
- Topics: 2
- Replies: 258
- Total: 260
- Guardian Angel
@sabrecat
Hi Gaj,

so sorry to hear this and I too will be watching what to do.

Otherwise, “The good news from my visit was that my CT scan and AFP tests both look fine so that was a relief. Also, since mid Nov 2015 when access to generics allowed me to commence treatment my overall health and quality of life has improved in so many ways. I’m extremely grateful to Dr Freeman and the rest of the FixHepC team for providing me with that opportunity.” says a lot for me too.

Had my life back for a good while and would do the same again six ways to Sunday and twice o the Sabbath. Had two glasses of Red at a mates 67th on Sunday, and half a packet of Coles brand chocolate buttons Saturday night as well. Tantrums accomplished; back on the wagon for me.

The interlude of being well saw me lose another five kilos as well. Hoping for more interludes for both (for that matter ALL) of us.

Yours

Jeff
11 July 2016 at 1:58 pm #20804
cheese
- Topics: 2
- Replies: 54
- Total: 56
- Recovery Champion
@cheese
Hi Gaj

Sorry to hear this. You have the right attitude and will prevail I am sure.

Some are cool under fire and always look at the positives.

You my friend are one of those rare birds.

I thank you for being the voice of calm and reason in many a thread on this site.

GT 1a
VL 4.9M
F0-1
Since Late 60’s
Meds Cipla SOF/LED
Start June 7, 2016
11 July 2016 at 2:31 pm #20807
mgalbrai
- Topics: 28
- Replies: 1,298
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- Guardian Angel
@mgalbrai
Well…
Shit.
Threes…..
The Epclusa generic should be available soon.
Good luck on the research.
m

Curehcvnow@gmail.com
http://forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
11 July 2016 at 3:01 pm #20808
Dr James
- Topics: 264
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- Guardian Angel
@fixhepc
Gaj Sorry to hear you have a struggle on your hands. Your positive attitude will certainly see you through and at least you are feeling some benefits. Good luck

YMMV
11 July 2016 at 3:35 pm #20810
Woobia 22
- Topics: 2
- Replies: 32
- Total: 34
- Treatment Warrior
@woobia-22
Well that is not the news I wanted to hear, hoping the August test results will show something Positive.

Be your usual strong self and keep up the exercise.

Thanks for all the advice you have given me and thoughts are with you, just another small hill to climb.

First diagnosed Nov 2012 with Hep C 1a End Liver disease
Failed peg and Sof/dac
Given 18 mths to live Aug 2014
Failed sof/dac July 2015
Sep 2015 given till March 2016 to live as nothing they can do
Sourced a supply of sof/dac from India told I was a fool by staff at SCGH
Been in a coma twice 2016 6 stays in Hospital
Last 4 weeks have been unreal back into life again
Hope No One else is treated like Shit by Med Specialists as the Nurse are UNREAL The Good Doc Freeman is genuine Barry Ashton

Barry Ashton
11 July 2016 at 3:41 pm #20811
Greedfighter
- Topics: 28
- Replies: 582
- Total: 610
- Guardian Angel
@greedfighter
I’m sorry to hear that Gaj. But the new generic treatment should do the trick!
11 July 2016 at 3:56 pm #20812
beaches
- Topics: 10
- Replies: 750
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- Guardian Angel
@beaches
Bugger.
Sorry to hear this.
Plan Bs will be available for you very soon, hang in.

Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
11 July 2016 at 6:21 pm #20817
re_roll
- Topics: 8
- Replies: 120
- Total: 128
- Guardian Angel
@re_roll
Gaj wrote:

Apparently the current work on GT3 related RAVs is limited so I’ve supplied blood samples to see if the scientists can put together some local research and hopefully determine which variant(s) may be involved. If successful this may assist the treatment decision process for myself and others in future but they think it will be at least early August before they have any results. Until then I’ll be keeping an eye on generic Velpatasvir/Sofosbuvir treatment availability and suitability.

G….very sorry for the bad news, but you “got this”. Eventually, gt3 will be conquered.
Hopefully sooner than later…..e.

contracted Gen 1a in the 70’s, dx in 2007…ast 27 to 35…alt 43 to 96…vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16…. lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later………….lab results 3/9/16 ast 21, alt 21, vl UND
56 days later………….lab results 4/6/16 ast 20, alt 22, vl UND
139 days later………..lab results 6/29/16 ast 28, alt 30, vl UND…EOT
SVR24
11 July 2016 at 7:00 pm #20820
Matt-Kenney-google
- Topics: 1
- Replies: 423
- Total: 424
- Guardian Angel
@matt-kenney-google
Wow Gaj! I hardly know what to say … Of course I echo everyone’s well wishes … It’s at times like these we all feel so helpless, words can’t describe … But, like you have done time and time again, you turn pain in a positive direction, even though this time it’s your own pain. You think of others even when experiencing personal disappointment and find ways to encourage us through a discouraging point in your life and then focus attention away from your pain by thanking those who have and continue to help and support us. All I can say is… What a man! When I grow up, I want to be just like you.

Thank you Gaj,

Matt

GT1a; Got it some time in the 70’s; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA NOT DETECTED”
11 July 2016 at 8:00 pm #20824
LondonGirl
- Topics: 16
- Replies: 1,348
- Total: 1,364
- Guardian Angel
@londongirl
So well put Matt

GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
11 July 2016 at 9:15 pm #20829
fitz
- Topics: 9
- Replies: 490
- Total: 499
- Guardian Angel
@fitz
Gut punch, Gaj. For sure. You G3’s have a tougher path.

Know that my thoughts, my prayers, my energy are with you and for you to beat this. You are surrounded by love, and support, and best of all – a really, really excellent team here.

I too believe you will beat this.
12 July 2016 at 5:43 am #20842
MtGoat
- Topics: 5
- Replies: 74
- Total: 79
- Recovery Champion
@mtgoat
Damn it straight to hell. Really sorry to hear it Gaj.

Cheers
3a for 35 years
Dx 1996, tx naive, ALT 46 AST 38 VL 140K
Started Sof/Dac 1/23/16
Kingswood generics AUS
2/19/16 4wk lab HCV Undetected ALT 14 AST 19
EOT 6/1/2016
TX was 18 wks (w/some 1/2 doses & 1 skip dose after 11 wks
while waiting for +6 wks to arrive)
SVR4 6/30/16
SVR12
SVR24 Redeemed
12 July 2016 at 8:52 am #20848
coral
- Topics: 8
- Replies: 598
- Total: 606
- Guardian Angel
@coral
Sorry to hear this Gaj but good to see some positive results amongst the disappointment. I’m sure you have your tough days but please let me add my thanks for your voice of calm reason.
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