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TOPIC: Genotype 3's info, updates corner

Genotype 3's info, updates corner 1 year 5 months ago #6043

  • sabrecat
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Hi Bloot,

I decided to do 24 weeks (I was F3 in 2012 and probably now F4 as a result of waiting and turning 60) to be safe.

Funny now people are to'ing and fro'ing about combinations and length of treatment etc., when all there was before was 'the wait'.

Don't think I have ever stated my thanks to those (Dr Freeman and the Buyers Club) who made the meds possible, and all the people with funny handles on this forum who shared their lives - so now a big thanks!

Hope your treatment goes well, and gee its great to be able to have some control with what's happening with this disease.

Yours


J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 16 May 2016: 4 ref <11
6. AFP 11 June 2016: 4 ref< 11
7. VL 4th July 2016: DET
8. ultrasound 12th July 2016 - OK
9. Oct 2016 - back on treatment
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Genotype 3's info, updates corner 1 year 5 months ago #6045

  • Bloot
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Thanks Sabrecat
Dr Freeman is up there with Dr Nitschke
Doctors who think outside the box and use common sense, guided by what is best for the person rather than sticking doggedly to rules

What I particularly like about the buyers club is that you are your own 'man' (person)
It's up to you how you want to do it, hence the conjecture over combo's and duration (plus the evidence is limited being so new)
It's not 'you'll do 12 weeks on this combo' end of story
I hate being told what to do unless it is explained to me why I have to do it and why that particular way
That is why the Buyers Club sounded too good to be true when I first read about it
It is thankfully the exception that proves the rule 'if it sounds too good to be true, then it usually is'

Good luck with the 24 weeks mate
Believe me, for the last 12 years I've not treated my liver with kid gloves, yet it seems I'm still not cirrhotic (F4)
So you may find you are still F3 - anyhoo, good luck yourself and hope to hear positive news of a negative result for you
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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Genotype 3's info, updates corner 1 year 5 months ago #6064

  • Life
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Bloot, what a story...you're actually feeling worse...I'm geno 3 aswell, on the forum since september...just finished 10 weeks...would like to add Dac/Sof...Just need to check out how...Thanks for your great posts!! :) :) :)
Bloot wrote:
Thanks Sabrecat
Dr Freeman is up there with Dr Nitschke
Doctors who think outside the box and use common sense, guided by what is best for the person rather than sticking doggedly to rules

What I particularly like about the buyers club is that you are your own 'man' (person)
It's up to you how you want to do it, hence the conjecture over combo's and duration (plus the evidence is limited being so new)
It's not 'you'll do 12 weeks on this combo' end of story
I hate being told what to do unless it is explained to me why I have to do it and why that particular way
That is why the Buyers Club sounded too good to be true when I first read about it
It is thankfully the exception that proves the rule 'if it sounds too good to be true, then it usually is'

Good luck with the 24 weeks mate
Believe me, for the last 12 years I've not treated my liver with kid gloves, yet it seems I'm still not cirrhotic (F4)
So you may find you are still F3 - anyhoo, good luck yourself and hope to hear positive news of a negative result for you
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Genotype 3's info, updates corner 1 year 5 months ago #6090

  • Bloot
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Hey Life
Well, I definitely don't feel better
I'm very happy that I am VMD at 4 weeks and all is on track so I'm not complaining at all
I'm just a bit, I don't know, perplexed as to how I feel no better and if anything I feel worse

Any symptoms I do have are subtle
My guess is that my symptoms previously were less than the symptoms of the meds
Others who had bad symptoms, the meds help to alleviate those and any med symptoms are not noticeable

Anyhoo, it doesn't really matter as I know I've done the right thing and grateful for it
And hoping for SVR24 and get back to feeling at least as good as I did previously, if not better

Merry hep free Xmas everybody :P
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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Genotype 3's info, updates corner 1 year 5 months ago #6091

  • Life
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Hey!! I've send you a personal message aswell!!!!
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Genotype 3's info, updates corner 1 year 5 months ago #6092

  • Bloot
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I don't get a notification of PM's
Answered you now - good luck with everything!!
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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Genotype 3's info, updates corner 1 year 5 months ago #6093

  • wilko johnson
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Hi,Bloot. Read some of your posts. Ime geno 3. 50yrs old,never had any physical symptoms that i could put down to HCV but wasnt diagnosed until July this year by chance on routine check up. I ve drank beers every day of my life ,more or less,like 5 tinnies a nite since age 14yrs. oh and enjoyed lots of fine weed,not to mention other stuff of every kind when i was much younger. but always been physically active,manual work and stuff. also do mountain biking,love that. since diagnosis stopped all drinking and smoking . amazed to have fibroscan of only f1 / f2 after all the substance abuse. Only problems being severe anxiety at times .Hoping to start tx soon and hoping that the anxiety is down to HCV and its gone. Been using hardtail bike but just gone and got full suss santa cruz nomad,took it round my local black run yesterday in pissing down rain conditions. Got home beaming like a 500w grow lamp lol. Do miss me beer but if undetected after 6 months i ll definatly be having the occasional few. Cheers Bloot and all the very best to you and all the others here. Wilko.
G3 tx naive f1\f2 vl 1368942 not the real WilkoJohnson.Dr Feelgood. started sof dac 29 jan . svr 24wks 7 nov 2016 cured!!!!
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Genotype 3's info, updates corner 1 year 5 months ago #6096

  • Bloot
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Woh, hardtail to a Nomad! Now that's living!
A Nomad or a Bronson with my own build would be a dream, and it will probably stay that way
I spend way too much money on bikes as it is :ohmy: I'm a bit of a bike geek

I'm pretty clean at the moment - probably why I feel so down lol
You're lucky with the low score - when I got the F3 12 years ago I was shocked
But after i thought about it, it was hardly a surprise really - it was a near death hangover that alerted me to something being wrong
I look back on all the things I've done to myself as a young feller, and while I can see why, it still shocks me - such a waste

My wife saw that I was on the forum and asked how things in the hep world were going
I fessed up that I've been feeling pretty low - like why did I bother trying to prolong my life rather than just let it be
I've previously been pretty happy and generally healthy and fit, but now when I should be feeling great, I feel low and unmotivated
She feels it's because it is all in my face now - again. I've dealt with my demons previous to this and moved on, but now they seem to be back
I've been thinking a lot about my life which never helps, and while i love this forum, I'm not sure how good it is for my head
I read about how peeps have suffered with the hep, but the meds have given them a new lease on life
This is pretty much the exact opposite to how I feel

Maybe it's just Christmas and I have to spend time with my zombie mother in a high care home and watch her dribble and ramble
Everyone thinks I'm a hard bastard and should feel some compassion, but I find it difficult.to muster any beyond just a show
I would have nothing to do with her except for my alien like brother and I had a massive argument and I conceded to help on my terms
So she has remained an emotional burden pretty much my whole life - a real piece of work
And here i am at 52 on hep treatment again, and I'm supposed to feel sorry for her! Sorry, no can do

Anyway, I'm starting to ramble on about myself and i need to stop throwing my baggage around
I don't really have anywhere else to vent, so thanks for giving me the space to do it

By the way, I've had a hell of a lot of counselling and don't need more - i actually think that would be counterproductive
I just need to see the tx out, get the focus off myself and get on with life like before

Ride on! Bloot out
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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Genotype 3's info, updates corner 1 year 5 months ago #6102

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I'm geno 3a, 2x interferon/rib fail, virus 30 years, cirrhosis at least 17 years but bloods mostly normal until recently. Fibroscan 13. I'm about to get 6 weeks bloods taken for 24 week sof/dac/rib. First 3 weeks, I only had sof dac, and I felt A-mazing. Three weeks more with rib and I am active only in 30-40 min burst followed by bed 1 hour. Sleep about 4 hours max at night . But beautiful blood tests- at 2 weeks ALT down from 118 to 15. At 4 weeks, viral load down from 1.4 million to 24, and I'd only 6 days of rib by then. So I can endure, because its working, but can't help but hoping new results coming in will let me off the hook for some of the 24 weeks if I'm clear say at 8 weeks.
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan 40 down to 22 by 29/3/16- 10/16 dropped to 9.5, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
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Genotype 3's info, updates corner 1 year 4 months ago #6353

  • sabrecat
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Hi Bloot,

"I read about how peeps have suffered with the hep, but the meds have given them a new lease on life
This is pretty much the exact opposite to how I feel".

I started treatment 25 years and two and a half weeks after I became infected. I think I get the gist of what you are saying.

Physically I have much improved since about 2 weeks into treatment; no side effects worth noting - physical that is.

How I feel though? Well:

a) happy about getting a potential get out of gaol card health wise; maybe even delay the next HCC?
b) perplexed as to how I can fill the days with new energy when before I was too tired to give a f....
c) scared that the promise of health may not work SVR wise and the process was like interferon and riba minus the side effects.
d) angry that I felt like I was an ignoramus and generally told to go away and cope/be healthy/loose weight/soldier on and the constant fatigue was something I could do something about. Refer point b. above, its the illness that causes the fatigue methinks.
e) never had a lot of people to share the emotional burden with - get sympathy, suggestions about diet, and quite frankly I don't want feel I have to share everything about myself to feel good anyway. BUT reading this forum is sometimes painful, but more often good.

How do you manage all this after 25 years of having life dictated to you by some virus? I don't know. This forum is good and it is great to see people doing what is needed to get better and SALVAGE what for many of us is the remaining part of our lives.

Don't know how I am SUPPOSED to feel really; I might have to ask someone released from 25 years of prison for a crime they did not commit?

How I will manage if I get better - FIIK. In for another rolla-coaster ride - maybe? I have read a few of your posts and I expect you will work it out too. I know I have to. Again my gratitude to those who gave me the opportunity.

yours

J.
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 16 May 2016: 4 ref <11
6. AFP 11 June 2016: 4 ref< 11
7. VL 4th July 2016: DET
8. ultrasound 12th July 2016 - OK
9. Oct 2016 - back on treatment
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Genotype 3's info, updates corner 1 year 4 months ago #6366

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Thank you Sabrecat,

In many ways your stated feelings resonate with my quieter moments. My life seems to have changed greatly over the last six weeks but I am still unsure where it will lead and what will develop. I suspect it will take some time and I will need patience.
G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17

And I couldn't wait to get on the road again
On the road again, on the road again!
- with apologies to Willie ;)
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Genotype 3's info, updates corner 1 year 4 months ago #8350

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Well, nice to have found this little corner :) Honestly, I've been on this site for a few months and still keep finding areas I didn't know existed.
Anyway, I'm 52 yo female, G3a, diagnosed 1980. Started Sof/Dac 13/01/16. Earlier Doc had suggested 12 weeks but by the time I had my GP2U consult further research suggested 16 weeks would be better.
It's only been 4 days and I have been feeling -
* speedy, heart racing, intense sweating, highly animated, energetic bursts - all 'round 'hyper!
* doing lots more during day than ever normally capable so I'm 'crashing hard in arvo and going to bed utterly 'trashed';sleeping solidly but waking suddenly 'alert' and mind 'wired'.
* appetite normal, not 1st day, very dehydrated from sweating profusely.
* normally drink a few wines a night but stopped to start Tx; haven't had hard drugs for many years and not smoked pot for about a year (miss that though :P )
* having a roller-coaster ride with emotions/moods; I feel joyful and energetic at times, sadness and grief + crying spells and generally overwhelmed.

I was thinking about what Bloot was describing with how he's feeling. It's all in my face now too. When writing my 'history' elsewhere, a lot of it really hit me hard. Looking at my timeline I realised I was younger than I've 'thought' when i got infected, therefore also my Bro and cousin. I was diagnosed Summer, late 1980, which means I was only 17 when we went on this 'Drug Bender', I was still violently ill when I turned 18 and didn't celebrate big time. I was living at my Dad's with my little bro, 9 yo, looking after me. I remember him cooking me my favourite meal and baking a chocolate cake for me #love . He died suddenly, 'drug misadventure' (gotta love the way the cops deliver that news!), 2013 only 41 yrs. My Dad died at 51 yrs, nearly 20 yrs ago - cirrhosis; my cousin (him and my other bro intro'd me to the hard shit) died 2012, 51 yo - beaten to death in Cambodia; my surviving bro, also HCV G3a, cirrhosis doing badly because he won't stop alcohol/drugs, 51 yo, given 2 yrs to live nearly 5 yrs ago, so that's something. All this loss has been hitting me.
I've been 'sick' for so long and worse in past couple of years, I don't even know what 'normal' should feel like. Past 4-5 yrs the Specialists telling me to wait for new Tx but also telling me if I didn't get Tx soon I wouldn't see my 60th! So, I assumed I would die from this virus and never really know what it was like to have energy and do things without severe pain, feeling unmotivated, anxious and depressed to the end.

Now, the past few months have been a whirlwind of change for me and I think my head is still trying to catch up, I'm feeling overwhelmed.
I'm grateful for this site because I have absolutely no-one I can talk about this with.

Thank you all for sharing and I truly appreciate the support, info and life experience given here :) #love
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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Genotype 3's info, updates corner 1 year 4 months ago #8352

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Thanks for sharing your background and story Chejai...no wonder you've come up against a whole shedload of different feelings since starting tx - now you're finally on the road its not surprising you've had to take stock of everything that's happened in the past. We are all having to play catch-up both physically and emotionally I think.

Great that you are finally on the path to regaining that life, which none of us thought we would have...when your view has been so narrowed it is going to take some adjustment to see a 'future' for sure :)
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
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Genotype 3's info, updates corner 1 year 2 months ago #12167

  • wilko johnson
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Started my sof dac 29 JAN for genotype 3. First viral load test at 3 weeks 3 days <12 iu/ml. RESULT!
G3 tx naive f1\f2 vl 1368942 not the real WilkoJohnson.Dr Feelgood. started sof dac 29 jan . svr 24wks 7 nov 2016 cured!!!!
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Genotype 3's info, updates corner 1 year 2 months ago #12169

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Awesome!!!! ;)
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Genotype 3
VL 4,100,000
ALT 101 AST 71
Treatment Naive
Started Sof/Dac Jan 12, 2016
VL= <15 4 weeks in. AST/ALT normal.
VL=UNDETECTED 8 weeks in.
SVR4= Virus back. 3,300,000
1 week later= 20,741,477

I know I will be cured.
Thank you Jesus.
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