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Post Info TOPIC: Closure of Australia's Forum
Tig


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RE: Closure of Australia's Forum
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Hi Iris,

I sent you a PM to discuss this situation. Don't you worry about how often you're active here! You're a long time friend and member, always welcome and always part of the family here. smile



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Say there. ..do you have to be a citizen to get services? Or could I fly there and get treatment? 50 dollars and a plane ticket would be way more affordable  than it is here. I wonder why this is such a problem for the USA? Makes me angry. They force us to get insurance then the insurance won't cover the proper treatments unless as I read below "you have one foot in the grave" .

Even though I haven't been very active on this forum in a long while it's good to know there are others who have trod the path and we can check in whenever, it would be a sad day if it ever went away.

Bb, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)

Tig


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I found an interesting article and description of the Australian efforts to battle and win against Hep C. They are a global leader in addressing the disease and those affected by it. 

Australia Leads the World



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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ah! Well then, I did completely miss the memo! Ew, over. Hm, very sorry bout that. Woulda wished you well(er) sooner! Did it have to be a big one, (Murphy) ... wish it had been a next-to-weeny one! And here we were thinking the shift to the metformin/AC1 diet was hard to take. Good you are used to doing things in a big way. Steak and chips diet in full moderation now eh. Being forced into good habits IS one sure way we can change them. Cigs!!, I can hardly believe it - but good you can't afford them anymore. Sounds like you are well on your way to full compensating collateral recovery. I would not expect anything less from you. Very good you like golf (and fishing, given the new diet). Write home more often eh, jes so's we can keep up with ya! Heal well, don't work too hard, it's early days yet, only been 4-5 months post MI? Past the crunch, but steady as she goes bro. Man, the lessons our organs teach us. So glad you survived the insult so well. You musta scared a lot a folk tho, not excluding self! Tough as nails (for quite a few around here) comes in handy I see. Really glad you are OK and recovering. smile C.   

 



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Your EF has improved greatly! That must feel like quite an accomplishment. I can’t imagine how grueling cardiac rehab must be. Sounds to me like you attacked it with the same determination you’re known for around here. Well done. The one on one exercise program would be a benefit for all. Personalized instruction is a great way to get fit. I could sure use it. 

Stay hydrated in that heat! What have you got your handicap down to? Good luck!



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Thanks for the replies.

Canuck, I had a big MI in August with AF. One lousy ruptured plaque completely blocked my LCA.

Life has changed- no more cigarettes, salt and heaps of fish!!

The cardiac rehab has improved my EF from 35% to 45-50%, so all is good. I'm really enjoying one on one structured exercise.

I had a last look at the Aussie Forum. Very little activity and no new members for 6 months. Back in the Interferon days, it was really buzzing.

I hope all the new drugs will be available to all.

Cheers. off to golf (35C!)

 

 

 



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Hello Malcolm, good to hear from you!

Quite astonishing news about the Australian forum, and I agree with RC, what an amazing turnaround from just a few years ago.  We knew this would happen eventually, that there would be no further need for Hep C support groups, but wasn`t expecting it would be any time soon.  Excellent news for Aus! 

Going back to what Tig`s comments though, I wish you all the best of luck with the ongoing cardiac rehab.  I do hope all goes well for you, Malcolm.  All best wishes to you and your family.  x



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 



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Hi Malcom, nice to hear from you. 2.5 years ago you needed to have one foot in the grave down under to get any chance of treatmenT. O how times have changed. What a good thing for all the Aussie. Thanks for your guidance in my early road to treatment, you were spot on in all your advice. I should have done 24 weeks sof/riba, but the trial arm I got was 16. Trial two you said that if I had ringing in my ears that I should not do 12 weeks sor/riba/peg, well I did it and the ringing got lots worse and to this day I have a constant ring at about 20 percent volume, will somebody please answer the phone already!  You bust your ass to cure the virus and then to go on to a heart attack, just doesnt seem fair.  Depending on how you look at it,shutting down the Aussie forum is a good sign of the times ahead for HCV cure. But hardly a minor treatable infection in my opinion.     Take care Malcom-  RC



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 M-64) 3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18   



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Huh? Heart! Rehab!? What ... did I just forget, or, did I just not ever read that memo?

Ditto what Tig said, hope all is good with you and yours, on your side of the pond. smile C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)

Tig


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Hi Mal,

Good to hear from you! I wasn’t aware that the AU forum was closing. I have just recently seen a huge increase in registrations here and now I wonder with your update, if they are signing up here. The odd thing is they’re registering, but not completing the process. Not sure why there are so many. Searching for answers and information I suppose, but no desire to chat which takes confirmation. The access to treatment is still quite a process here in the US. It’s nice to hear Australia has made it easy. 

I‘m not sure how long this type of forum will be needed by the masses. We have seen a significant drop in activity lately. Certainly the ease of these new treatments and the rates of success have made clearing/curing the virus almost guaranteed. I shudder to think about the things we all went through just a few years back. It has been four years in my case, that’s hard to believe. This forum was so helpful for me and you, Jill, Matt and Tim had the helm at the time. I remember talking a couple years ago about the future of our forum. We have certainly seen things improve, dramatically! The member participation will be the deciding factor and so far we are seeing a large number of daily page hits. As long as that holds up and the money lasts, I’ll keep the lights on. We have made so many good friends, I’d hate to see that connection end. I don’t know what I’d do with all the extra time if I wasn’t stalking the forum daily! wink

I hope you’re continuing to see improvements with your heart and rehab. Cardiac rehab can be tough. Can you imagine having to do that on Riba? >>NO<< I think that might be almost impossible! Especially with a Hgb of 50-90... I’m glad you don’t have that to deal with, too. Fill us in when you can. I hope the family is doing well, give my best to Lani.

Talk to you soon,  Tig.      “Cheers!”



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Hi mallani,

Good to know. You are the bearer of good news (for the most part). New DAA's, availabilty, affordabilty, less questions about whether our Hep C will get cured - it's a whole new DAA world! Still, some will miss a place to query, without the forum.

How goes everything else on your side of the pond? biggrin C.

PS - forgot to ask, where is Mav and Vovesi at - is it being doled out over there yet? - I didn't find them listed.



-- Edited by Canuck on Tuesday 9th of January 2018 02:56:15 AM



-- Edited by Canuck on Tuesday 9th of January 2018 02:57:09 AM

__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Guru

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Hi guys,

The Australian HepC Forum has just closed, due to lack of new members. Over here, all the new antivirals are available to all on our PBS system. ~$50 for most people, $12 for the pensioners and free to others.

It was a very busy Forum for the last 10 years, but HepC is now regarded as ' .....a minor, treatable infection'.

Best wishes.

Malcolm



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm

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