emo Any other geno 3, F4's doing/done treatment?

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6 years 8 months ago #4057

I wanted to add my congratulations Crazy8. I love these good news stories. Did you do that jig??

I'll have my first 4 week blood test next week so here's hoping. Either it's my imagination or I'm definitely clearer headed.
No side effects except I'm still making up for three decades worth of no dreams.

Coral


G1a probably early 1980's, Biopsy F1(2010), F2-F3(2015). VL 5+mill; 2+mill (2014) Tx naive. Accessed Sof/Led through Dr Freeman at GP2U and Buyers Club (lifesavers!!!)
Commenced tx 12/11/15. 9 wk: VL <15 Detected but LFT = Normal 12 week results: UND (Yay!) Due to slow response commenced Sof/Dac 4 Feb for 12 weeks. EOT @ 24 weeks 27 April 2016. (With thanks to Dr Freeman et al). SVR11 result: VL 1,950,000. It's back!
New tx 030916 (Viekira Pak, Solvadi, Ribavirin UND @ 111116. EOT 170217.
SVR12 and SVR 24...
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6 years 8 months ago #4071

berrinice wrote:

Hi Bloot you might want to get viral load done at about 8 weeks cause if you count is less than <12 then they are saying there is no need to go much further with treatment. But 24 weeks is what I am doing. Better safe than sorry. Hopefully there are no harmful effects after prolonged use. Maybe the Dr can answer that. My feeling is the jury is still out. kindly

Like you I'm probably going to go 24 anyway, but not add the Riba if that were the case
Reason is that the interferon/ riba previous tx showed that the virus was not detectable
But then they contacted me later and said it had come back
I'd be pretty pissed off if I went for 12 because i showed nil virus and then showed positive later


52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.

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6 years 8 months ago #4079

Thats a great result mate UND after 2.4 weeks just about the quickest we have seen.

cheers


Two time relapser.

SVR 4 achieved 12/16 at last
SVR 12 achieved 22/02/2017 The Bastard has been defeated :):):)

GT 3 - about 28 yrs with HCV
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6 years 7 months ago #5419

Hi All,

I was feeling lonely in the G2s so thought I'd join a more trendy clique. :P

Meeting with Hepatologist this morning

Me: So, I've never known what subtype of G2 I am, is that on my file?

Prof: Ummm......you're a 3a. What made you think you were a 2?

Me: Errr, that is what I was told when diagnosed 4 years ago.

Prof: Hang on...no here is your original test: 3a.....no doubts, no changes.

So, did the nurse or original interviewing specialist misread? did I mishear? was I confused with something else I was told at the time, after all there was a lot to take in? Buggered if I know but here I am now a F4 G3a

The good news is my week 4 results show significant improvement per my signature and my latest CT is all clear. So all those niggling little doubts at the back of my mind are gone and I'm kicking goals with my new team. :cheer:

G

(To the 2 team; sorry guys, luv'd playing with ya but the threes just offered me more money so I sold my soul.)
B)


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
:cheer: :cheer: :cheer:
Last Edit: 6 years 7 months ago by Gaj.
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6 years 7 months ago #5421

Yes I would speak to the doctor whoevet had told you the just because you have a result of HCV RNA UNDETECTABLE during treatment means its all over is A FOOL & DANGEROUS. There are many people who have acheived UND & later tested positive. That is why you are only consider to have cleared when you have showed an UND at 24 weeks AFTER treatment had finished.
This type of uninformed "advice" is just what I have feared since this whole thing got started. To me it just beggers belief that someone would embark on this treatment without at least reading the very simple, easy to read information provided on this site let alone start giving "ADVICE" to others. It is very simple read & inform yourself please !
Angus

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6 years 7 months ago #5425

Just to clarify my post above. I have never been lucky enough to reach UND, though was very, very low at end of trial in 2013 however it sprang back up quickly of which I was quickly informed.

I also reckon that what I was told by either the nurse or interviewing specialist (can't remember which) would have been correct about my genotype and that given I was just diagnosed and anxiously trying to bring myself up to date on what the hell the implications of having this virus were, it was most probably me who made the mistake! And the question never came up again until today. I trust my specialist implicitly, he had been trying to fast track my treatment and when I proposed generics he readily agreed and prescribed treatment for me based on correct tested genotype and liver condition.

G


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
:cheer: :cheer: :cheer:

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6 years 7 months ago #5465

Welcome to the 3's club GAJ, I'm hoping you'll get a quick UND, of course in itself that won't mean much, it's the 12/24 week post treatment SVR that's the goal, but an early UND will give you confidence that the Sof/Dac treatment is working well and goes a long way to easing anxiety.


GT 3, F3, Contracted 1993 Tx Naive
V/L 1,267,000 AST 67 ALT 65 6/10/15
commence Sof/Dac (Mesochem) 6/11/15
AST ALT normal 24/11 *
*V/L UNDETECTED 24/11*
Last Edit: 6 years 7 months ago by crazy8.

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6 years 7 months ago #5515

Great to read here how well you guys are going. I have a question regarding my brother - we both have had HCV G3a for 34 yrs - BUT he has cirrhosis and I don't. He's in another State, so it gets hard trying to get info off him, he's too 'brain-fogged' a lot of the time and can't remember his results. He had a Fibroscan within the past 2 yrs, don't know score just that it confirmed cirrhosis.
He's been waiting to get back into his Public Liver Clinic but appointment isn't until May 2016, last visit May 2015 - Specialist told him to 'wait' for new DAA's. His GP is desperate to help him but can't get him in sooner.
Since I did the GP2U consult with Dr Freeman last week, my bro is now asking me if he can go that way too.
Those here with G3a - F4 - that means cirrhosis doesn't it?
Did anyone go via Dr Freeman? Can someone be 'too advanced' to be able to have tx?

Any advice?


QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H

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6 years 7 months ago #5516

Hi Chejai,

Yes, F4 basically means cirrhosis. On the Fibrosis scale in Hep C the cirrhosis F4 scale starts at about 14-15kPa and goes up to 75kPa so is a large range. See link below.

fixhepc.com/forum/experts-corner/122-fib...-and-hepa-score.html

Like the rest of the F scale cirrhosis is also graded as to how bad it is and the major groupings are Compensated where your liver still functions well enough that you don't have major problems from it as long as you look after yourself. As it worsens it becomes Decompensated and there are then serious medical issues all the way up to total liver failure. My understanding is that most stages can still be treated with the DAAs in the right circumstances on a case by case basis however I'm not a doctor so can't provide informed advice.
If your brother is receiving care from his GP with only annual visits to Liver Clinic then it appears he is still compensated so doesn't sound like he is too advanced for Tx but again, I'm not a doctor so those are just my thoughts.

I didn't go via Dr Freeman as I'm already lucky enough to have an excellent specialist who was very supportive in writing scripts for generics and then monitoring me.

If as you say, your brother's GP is keen to get him help perhaps he would be prepared to provide your brothers full medical records for your brother to have a consultation with Dr Freeman and would then provide monitoring if Tx was suitable and prescribed?

G


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
:cheer: :cheer: :cheer:
Last Edit: 6 years 7 months ago by Gaj.
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6 years 7 months ago #5519

I am Geno 1a but I have a friend who is a Geno3 with compensated Cirrhosis.
The liver clinic want to put her on Interferon! Luckily we had a conversation before that could happen. She's not into computers much.
We were looking at her results...14.3 kPa Fibroscan, and RNA IU/ml ...2.1 X 10E4 AND LOG 10....4.32.
I get the Fibroscan result, but I'm a bit confused by the RNA figures. Mine looks quite different on my results...a number in millions (or in my last one 600,000). Anyone have any idea what they mean?

I am trying to gather info on just why Interferon is so awful so as to help her escape. If anyone has any stories or links.


F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
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6 years 7 months ago #5522

Hi Flying fox,
I find it hard trying to figure those numbers out as well.

But I do know that the Ifn is a horrible drug & to be avoided at ALL cost.

It is now outdated & her specialist shouldn't be offering her that poison.

I had 4 lots of tx with that, and it's really affected my memory & caused me to have mini strokes.

My brain is constantly foggy & I reckon it's all the fault of those tx's.

So tell her that, & that being cirrhotic, it could damage her liver more & her whole body.

....I guess you get the picture that I detest the stuff.... :evil:


J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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6 years 7 months ago #5526

I was quite shocked to hear it too. Doesn't taking Interferon make it harder for the new drugs to work? They were telling her they'd switch her on the new ones as soon as they were on the PBS, but thats a very weird treatment plan surely. Maybe they feel like they have to treat and thats the only option. Major Brisbane hospital btw.


F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia
Last Edit: 6 years 7 months ago by flyingfox66.

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6 years 7 months ago #5621

Hi Flyingfox,

I think there are plenty of people who have treated with the old SOC ( Interferon) & are now on the orals, & getting UD :)
So no worries there.
x.


J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
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6 years 7 months ago #5623

Here is what I posted wrt Interferon/Riba in reply to someone on killthedragon:


"If you have joint pains now, nothing can prepare you for the body pain you will get on Interferon a few weeks in from starting, and the Riba will make sure you stay awake at night to 'enjoy' the pain 24/7. You will start lying down (not sleeping) downstairs at night because getting up the stairs is pure torture. If your bathroom is upstairs.....well, I won't go into that. And I was the healthiest hepper in the world when I started on that filth.

My pal wasn't in too bad shape when he started 48 weeks Inerferon/Riba, suffered but stayed positive throughout. Treatment failed and he was quite ill (as was I, but less so, when I stopped after 12 weeks). He just got more and more sick after that and died about a year later. Never saw his fiftieth birthday. Great big bear of a guy. Stong as a bear too."

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6 years 7 months ago #5656

Argh!
Thanks for that Alsdad. I'm very sorry about your friend. What an awful experience :/
It sounds worse than chemo.
I'm sure that story will galvanise her determination to refuse it.


F49HepC25ysGT1a
"mild"
Harvoni 12 wks
Brisbane, Australia

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