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SVR24 7 years 7 months ago #21023

  • pat1
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Waiting is
so stressful

in my head I think that I know that I am ok

anxiety kicks in though and I acknowledge that my treatment has gone to plan and I am very thankful for that. What is it that throws me these negative and repetitive concerns through out my waiting, waiting moments?

so to a different clinic

last week I visited a gastroenterology clinic in the city recommended to me by a forum friend. I was given a comprehensive path request for a whole range of tests. I was booked in for a fibroscan and ultra sound. I asked my new doctor if I really did need to test for SVR24 and he tilted his head and looking at me said ‘ah no, not really’ and then said ‘ but I haven’t walked in your shoes’
so kind

he told me that 450 scripts had been issued via PBS from this Melbourne hospital so far and I thought to myself that wasn’t really many at all

someone close to me suggested that I might be suffering a kind of trauma of ‘aloneness’ signifying that since diagnosis I had carried this knowledge with me and told no one
so true

I’ve been thinking about this a lot because I was isolated in clinics and by doctors and felt
so traumatised that I couldn’t start my own blog on fixhepc because I was terrified
so many supportive friends here though, thank you

SVR24 means 99.9% cure and

and so the doc phoned today
and said 'I checked 3 times'
I held my breath

he said ‘can you live with out it?’

you are undetected
certainly you are ok

however believe it when I say that I will test every year

I recognize that waiting is a known given for all those of us with HCV and also for those as yet untreated and those retreating. I acknowledge the horrendous interferon experience that people have suffered through previous treatments

I think about the unavailability of these drugs across the world and the consequences

I wish everyone wellbeing and health
#flower #flower #flower #flower

Thank you James and Greg and Fixhepc team also GP2U

so then I went for a walk and
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
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SVR24 7 years 7 months ago #21024

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Such a beautiful post Pat1, you have such empathy for all and you have been such an inspiration to many. I am so stoked for you. Thank you for helping me through a bump in tx, thank you for your caring manner on this forum, always interested in patient stories and real issues we face. I am so happy for you, Pat1. Thank you for talking about the reality of HCV and the issues worldwide, we are the lucky ones aren't we......and I am still a few weeks away from my SVR24 but know that we are so lucky here, I agree with everything you say. You made it through this major milestone girl, that is brilliant, and I agree about testing yearly,, I will be after all the shizzle we have been through why not be nice to ourselves by being vigilant, yes yes!
HepC Freeeeeeeeeeeeeee
Love and giant bubbly splashes from Ariel #flower #flower #flower
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
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SVR24 7 years 7 months ago #21034

Ariel, you have nothing to worry about!

If you are SVR 12, that is at least a 99% chance of cure

With low fibrosis score and low VL to begin with, I bet you are cured. You have great ALT/AST scores

I was 6.5 million VL prior to treatment, but I feel so good I will be shocked if I relapse. At this point it comes down to how you feel, I bet you will be SVR 24 for sure.
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
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SVR24 7 years 7 months ago #21038

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What a wonderful post from the heart Pat1. I am so very happy for you and what a good doctor to say "I checked 3 times". It showed that he really did understand the importance of these results to you.

Your next task is to really take it in and enjoy the freedom. Many of us have carried the secret and the virus for so long that I think sometimes that needs to be a conscious thing.

On a personal note thanks so much for your well timed PM. It meant a lot.

Enjoy the day Pat1. #love #flower
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
The following user(s) said Thank You: LondonGirl, pat1, Ariel, beaches, Fara, fitz

SVR24 7 years 7 months ago #21042

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:woohoo: Congratulations Pat1,

I'm so glad to hear that you have received such wonderful news! :+1: :cheer:




But of course such news requires a little (three times) happy dance too.
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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SVR24 7 years 7 months ago #21043

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Wow, great news Pat! Awesome post.
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
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SVR24 7 years 7 months ago #21046

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I will say this, you're an inspiration to all of us and the news is incredible. The job Dr Freeman and the entire staff has done is miraculous. Again a big congratulations, woohoo!!!!!!!!!
In good health my friend.
Contracted HCV 1980's
Geno Type 1a
F3 ( doc says once treated I'll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count - 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 - Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
The following user(s) said Thank You: pat1, Gaj, fitz

SVR24 7 years 7 months ago #21047

Hi Pat
Your post is lovely, congratulations on your SVR and the freedom that comes with it.

#woohoo!
SVR 24
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SVR24 7 years 7 months ago #21055

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Thanks Sven #flower
with 4 weeks path UND
I look forward to reading your SVR24 mate :+1:
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
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SVR24 7 years 7 months ago #21056

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Well said Pat1 #love
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
The following user(s) said Thank You: pat1, Ariel

SVR24 7 years 7 months ago #21057

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Hi Pat,
I am delighted to hear your news, and it's heartwarming to hear about the very kind doctor you saw.
RSF
G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc
The following user(s) said Thank You: LondonGirl, pat1, Ariel

SVR24 7 years 7 months ago #21058

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Hi Pat1 that is one beautiful post thank you. I am just over 1 week into treatment and feeling somewhat shattered today so reading your SVR news is super emotional and has given me such a lift. It is certainly one huge rollercoaster we are all on not quite knowing where we are heading but hoping its the same end stop :)

The loneliness you mention in your post is so the reason we all need one another on here. I have come onto the website each day when I get a moment to read a little of everyones posts past and present, as it is quite a bit to take in! There are so many great stories, questions?????? ideas :idea: :idea: :idea: and so so much more particularly loving the music :) I find it hard to concentrate on writing too much but reading your post today just had to come and say a big THANK YOU Pat1 for sharing your words and your rainbow ;) I hope you do stick around for a good while.
much love and hugs
Nadia xxx
Diagnosed Hep C genotype 1b early 1990's. Treated 1998 peg Interferon/Riba non responder :-(( Meds stopped after 4 or 5 months.
Fibroscan April 2013- 7.3kPa repeated May 2015- 5.8kPa mild scaring
May 2015 ALT 59 AST 56
21/7/2016 ALT 36 AST 44 BIL14
VL 939000
thanks FixhepC +Monkmed started Sof/Led 16/8/2016. :-))
OCT 3 AST33 VL UND
OCT 11 ALT 29 AST 36 VL UND
NOV 10 ALT 27 AST 37 VL UND
JAN 30 2017 ALT 23 AST 29 VL UND
SVR12 ALT 23 AST 27 VL UND!!
SVR 24 UND!!!TY EVERYONE!
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SVR24 7 years 7 months ago #21059

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That doctor sounds like a wonderful, compassionate human being.

We all need to practice compassion. :) #love

And yes, 450 scripts, that sounds like a drop in the bucket doesn't it?
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
The following user(s) said Thank You: pat1, Ariel

SVR24 7 years 7 months ago #21061

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Well.
Again congratulations Pat1 which is all I said initially.
I'm really not accepting the turning back of my post to you...back onto random stuff about me and the mention of R word and so on which I never spoke of.
I'm talking about you Pat1 not me, and for information to GF the hospitals here make one year appointments for us. It's just routine.
Some people have had a rough time and some still are and no thanks for triggering a vile past experience by ranting at me about R which I had never mentioned on another lovely ladies post. If that was meant to be something helpful it did the opposite
A
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
The following user(s) said Thank You: coral, pat1, beaches

SVR24 7 years 7 months ago #21062

Hi Pat,

I missed your SVR 24! So sorry, that is such great news! :cheer: :+1:

You're cured :woohoo: :+1: :+1:
Gt 1a, F0, VL 6.5 million, AST 59, ALT 62
Started Twinvir 1/15/16
6 wk. labs VL UND, AST 27, ALT 20
EOT labs VL UND, AST 23, ALT 19
SVR 16, VL UND, AST 28, ALT 17
SVR 24 , VL UND, 10/8/16
SVR 125, VL UND, 9/22/18
SVR 230, VL UND, 10/3/20
The following user(s) said Thank You: pat1, mgalbrai, Ariel, Gaj, splitdog
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