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TOPIC: One Year Later

One Year Later 5 years 7 months ago #21976

mgalbrai
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One year ago today I joined this wonderful, magical site.
What a year it has been!
How far HCV tx has come!
and how far ease of tx availability still needs to go.....
....and miles to go before I sleep...
Thank you all
m

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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

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One Year Later 5 years 7 months ago #21977

klhilde
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Yes Mike, in some ways it seems like yesterday, and in other ways it seems like forever ago.

For me it's been:
~ 3 1/2 years since I got shocked by the diagnosis
~ 27 months since I argued online with (who I assume to be) a Gilead exec over pricing strategy and IP rights
~ 17 months since I found Greg's blog (shortly before he left for India)
~ 13 1/2 months since I finally got the blood draw to determine genotype
~ 56 weeks since I joined the forum
~ 55 weeks since I jumped on the plane to Bangkok to get my fibroscan and ultrasound
~ 53 WEEKS SINCE I WALKED INTO DR. FREEMAN'S OFFICE UNANNOUNCED ... "Here I am"
~ 50 weeks since I finally got my hands on the meds
~ 44 weeks since I got my first UND results
~ 38 weeks since EOT

It's been long enough to see the oilfield die and I quit my job there, went to Bulgaria for nearly a month and got dental work done (couldn't manage to get a response from Slavi, but he was in the midst of a big national referendum drive), went back to Bangkok to see doctors about my peripheral neuropathy (nearly total waste of my time and money on that one).

Wow ... what a year it's been.
My bank account is about to zero now, but ...

Last Edit: 4 years 5 months ago by klhilde.

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One Year Later 5 years 7 months ago #21984

re_roll
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Thanks, Kev and Mike. You guys were at the forefront
of this site doing your thing.

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

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One Year Later 5 years 7 months ago #21990

LondonGirl
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I remember those days Kevin, Glad to hear you're doing well and dancing like James Brown too

Things have changed for the better so much since those uncertain and exciting days offering hope...
Just awesome .

I'm waiting on my SVR 12 results, Hope my next treatment is at the dentist, like you

My best wishes to you from Blighty.

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

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One Year Later 5 years 7 months ago #21991

klhilde Offline Elite Member Posts: 253 Thank you received: 498 Karma: 6	Ya, I seem to remember some of the first people here were you, dointime, panamajo and Nadia. I know PanamaJo has treated successfully. Do you have any word on Nadia and dointime? And yes, I really think the dental issues were also related to the hep.
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One Year Later 5 years 7 months ago #21994

Vororo
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klhilde wrote:

...

Wow ... what a year it's been.
...

Hey Mike, Kevin, ... yeah, I second that! What an amazing year!

I joined FixHepC just over a year ago somewhere in between you guys. But after getting treated and cured, I have been so busy with getting on with the rest of my life that I forgot my own FixHepC "birthday" (01-10-2015). Still check in from time to time, though...

What do you say we move all this to a "One Year Later" thread?

Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).

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One Year Later 5 years 7 months ago #21997

LondonGirl
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I'm pleased to tell you, Nadia and dointime are both clear

I miss dt on here actually. Lovely person and Nadia too, the UK trailblazer along with Dan , who is now also clear

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One Year Later 5 years 7 months ago #22005

DrJames
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And it was only 1 year and 4 weeks ago I posted this as the first post here:

fixhepc.com/forum/welcome/88-why-i-choose-to-help.html

And wondered if anyone would come, or if it would be a forum with 1 post.....

Shortly after stingray posted this:

fixhepc.com/forum/questions-and-answers/...w-this-is-legit.html

The answer seems a bit feeble now, but together we've all helped pave the way for those who wish to take control of their own destiny, rather than wait for the cavalry to ride over the hill to save them. If you could ask General Custer he'd probably say "Sometime's the cavalry don't arrive in time"

YMMV

Last Edit: 5 years 7 months ago by DrJames.

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One Year Later 5 years 7 months ago #22006

DrJames Offline Platinum Member Posts: 1980 Thank you received: 7261 Karma: 111	53 WEEKS SINCE I WALKED INTO DR. FREEMAN'S OFFICE UNANNOUNCED ... "Here I am" Yes, one of the trailblazers. It did feel like being in a scene from the Dalas Buyers Club with patients and medications wandering through the office.
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One Year Later 5 years 7 months ago #22008

Gaj
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Vororo wrote:

What do you say we move all this to a "One Year Later" thread?

Done.

Wow, looking back I realise that this is the week a year ago that I first found FixHepC after reading an article in the paper about a "buyers club". Reading all of your stories on here was an important part of giving me confidence to take the generic pathway and along the way I've learnt so much from all of you.

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

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One Year Later 5 years 7 months ago #22009

Sven
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Wow only 1 year!
So I would like to know, how many lives have you saved, how many life paths have you changed, how much positive impact have you been a part of, how much hope have you personally seen and touched? I know for sure you have saved many lives and one is mine. Just 3 1/2 - 4 1/2 short months ago I was resigned to die with this disease like my three brothers did, you have now given me hope that I do have a future and I can make plans and I now have hope.
I'm not trying to be melodramatic, but realistically you saved my life.
Thank you is not enough, im still not sure what is enough, can a person really measure that? That is an answer that may be left unsaid, for now.

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!

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One Year Later 5 years 7 months ago #22013

rohcvfighter
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Vindecat de HCV cu med. generice. Cured with generics HCV drugs.
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Hi Sven,

the tip of the iceberg showed ~450 people being treated till April this year, i.e. in the first 6 months

This was the number communicated at ILC Barcelona for the people enrolled in the REDEMPTION trial.
Since then many others joined and ...... think also on the fact that many many other people around the world perhaps were just in a need to find reliable information about generic drugs for HCV, so they came here, read about it, used a legal way to source their meds and got treated. And they are not included in any statistics. So .. my guess goes to a number having at least 4 zeros, but could be even more, 5 zeros and .... if not already, soon we will be talking about 6 zeros.

Oh, and all these thousands of people know now about the generics and the "lovely" price of the branded drugs. Multiply this number with at least 20 (at least 20 people around me know the story with Big Pharma and the affordable generic drugs

) and you might also get an impression how many people (with HCV, cured and not having HCV) know about the HCV generic drugs.

Cheers,
RHF

In fiecare an HCV ucide peste 500000 oameni.Medicamentele generice pentru hepatita C functioneaza. Nu deveni statistica! Cauta pe Google “medicamente generice pentru hepatita C”.
HCV kills more than 500000 people every year. HCV generic drugs work. Don't become a statistic.
By sharing this Youtube video you might save someone’s life!
My TX: HEPCVIR-L[generic Harvoni]-India
SVR52 achieved

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One Year Later 5 years 7 months ago #22016

beaches
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The life you save will be your own. START TREATMENT
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What a year indeed!

A bit over a year ago I was trying to contact Greg J and getting no response. Then the newspaper article about Fixhepc. Then the Australian government shelling out for treatment. Then getting the prescription in my hot little hands (and then nearly being run of the road by an idiot driver talking on their phone #ironic). Then Tx and CLEARING this demon. All this accompanied by a promotion and pay rise and finally getting my ITIL Expert certification (if anyone knows what that is). And swimming with whales.
A rather good year. Grateful.

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

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One Year Later 5 years 7 months ago #22018

CC2B Offline Elite Member Posts: 173 Thank you received: 300 Karma: 2	It was one year ago that I found out I had hepc Found this place sometime in Dec, only about 500 members at that time if I remember correctly. Started my generics in Jan, and now almost exactly a year later I am SVR24! Truely a life changing year! Forever grateful to have many more healthy years ahead
	GT2b diagnosed 10/2015 since: unknown 11/20/15 VL= 214,070 12/4/15 ALT=18 AST= 24 1/16/16 started sof/dac 2/13/16 @4wks VL=UND ALT=13 AST=22 3/12/16 @8wks VL=UND ALT=10 AST=18 4/9/16 EOT VL=UND ALT=11 AST=19 9/23/16 SVR24 ALT=11 AST=22 The administrator has disabled public write access. The following user(s) said Thank You: DrJames, klhilde, LondonGirl, mgalbrai, Ariel, isaing4, fitz

One Year Later 5 years 7 months ago #22050

coral
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A great post to start Mike. After many years of burying my head in the sand, in 2015 I was confronted with having to accept that I would need to have treatment for Hep C or face serious consequences. In addition, the side affects had developed to such an extent that they became impossible to ignore.

About a year ago a friend sent me a newspaper cutting about the new wave of HepC medications, the FixHepC Buyers Club and Dr Freeman. A few days later I made an appointment with Dr F through GP2U and started taking my generic medication on 12 November 2015. I remember at the time that it was so quick and easy that it was sort of surreal.

I started logging into the forum and saw Mike, Kevin, LG, Nadia et al. I am naturally pretty private so I thank everyone who jumped in with trust and openness and in doing so encouraged me to be part of this great community. It has been a joy to see the forum grow but in doing so it has managed to maintain its' core values of integrity and respect. All kudos to the moderators and members.

As it turned out I am in the "more difficult to cure" category so it has been an up and down year for me BUT one year later I have already started my second course of treatment that will finally put an end to this unwanted squatter I've been carrying for decades. And that's ok.

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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