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Dzdayscomin


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RE: Another Forum closed
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It's been a blessing for me and very well moderated...or should I say tolerated....lol 



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53yr M 1a acq 12/83 cirr pre tx MELD 17  tx nv diag 1/29/12  tx S/O 3/5/14  trans list.

EOT 5/28/14 UND 6/12/14 SVR 8/29/14 MELD 14 dx HCC 9/5/2014 tumor ablation 9/24/14

In the 10K lakes State It's not about us but those around us.
Fireman Rob


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This forum is the only source of reliable information I've been able to obtain. I'm sure there are many doctors out there (like mine) that don't know anything about these new drugs and can't/won't communicate with their patients.

I'm so grateful for the great people here. This forum has a long life expectancy IMO as there are plenty of personal challenges that go along with diagnosis, new treatments aside.



__________________

Age 33, Male. GT-1 for ten years. Diagnosed in March, 2014.

Treated with Sovaldi/Olysio: SVR 24 on February 16, 2015!
OldenSlow


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Isiscat2011 wrote:

The need for these forums may actually increase because the number of people who wish to treat will increase exponentially. Additionally, many more people will be learning for the first time that they are HCV positive.  

This is what I see happening. We are currently viewing but the tip of the iceberg, IMO. And, while minus some of the more debilitating sx of the older soc, the newer treatments will pose issues of their own, particularly when riba remains a component. Jill used the term "safe haven" and I think that's perfect. Many folks will need somewhere to turn for guidance, accurate info and compassion. This is that place.

wayne



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66 y/o male - Geno 1b - F4 cirrhotic dx 2001 - 16 wk treatment w/ Sovaldi/Olysio/Riba - Und @ EOT+24 SVR

 
Isiscat2011


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BTW, this is by far the best HCV forum I've ever seen.  smilesmile   



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Isiscat2011


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The need for these forums may actually increase because the number of people who wish to treat will increase exponentially.  Additionally, many more people will be learning for the first time that they are HCV positive.  

I expect the nature of the support will change--less focus on side effects--more education oriented regarding when to treat, how to pay, types of tx available, pre-tx and tx protocols, etc.  

In the US the bulk of tx will be done by nurse practitioners who work in community based GI/ID practices. The inevitable assembly line nature of tx will have the masses running to the Internet in droves.  

In time more liver/HCV centers will be set up to deal with the tx volume (as well as liver disease for the aging HCV population who were not treated soon enough).  Large expansions are being planned at Swedish Liver Center in Seattle right now and more money will be pumped into others around the country. For the next several years HCV tx will be very busy.  Plenty of need for patient-to-patient support.    



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.
Gator Man


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With the new therapies, the Friday Night Darts Club may become a relic of the past, but the information this forum provides is invaluable regardless of the type of tx. Even with a conscientious doctor, you only get a few minutes to have all of your questions addressed and will inevitably think of a dozen more as you are walking back to the car. While the forum may not replace medical advice, it certainly adds a tremendous knowledge base that helps with making tx decisions, insurance issues and many other matters that would be hard to find elsewhere.

More importantly, we are all in the "same boat" and can discuss matters free of the prejudice and fear that you frequently find with people unfamiliar with this disease. The type of needs may have changed because of improved treatments, but the support this forum provides in so many other ways needs to continue. I plan to remain a part of it for as long as people are fighting this disease and dealing with the aftermath.



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Geno 1b, compensated cirrhotic, 54 yo, prior null responder. Pre tx VL approx 595,000, tx with Sovaldi/Olysio (no Riba) started 1/8/14. VL 40 @ 2 weeks, UND @ 4 weeks. Still UND @ EOT + 1 year.

Gator Man SVR12, Dragon 0, Final Score.
pl1952


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I agree Scruffy!  As long Hep C is here, these types of forums are needed.  Back in the beginning of the year or so when I got serious, once again, about researching new treatment, I gained all my knowledge here.  When I finally got the courage to come clean with my GI doc about having hep c, he had never heard of S/O, but was in a round about way kind of lobbying me to come to him for treatment.  That's when I knew what I needed to do....I contacted a hepatologist experienced in treating this disease and my husband was treated first since he's cirrohtic and I was told, after testing, that I was able to wait till S/L comes out.  Everything I know, I found out here.  Any questions I had were answered here.  I can't begin to say how grateful I am for this forum and all the members for taking the time to share their knowledge and experience....



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Me: 62 yr. old female, GT 1b, fibroscan 4.5; VL 650,975 as of 2/4/14;started Harvoni 3/6/15; SVR


Hubby: 59 yrs.; GT1b; fibroscan 25-cirrhotic; S/O for 12 weeks started tx 3/20/14; SVR56; fibroscan done 7-7-15 = 8.5
Scruffy


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Yep a lot has changed. I see a more relaxed attitude about treatment. Side effects aren't so bad now. The more they phase the inter/riba out of the mix the side effects will be less and less. A year or so ago treatment was a do or die with a lot of people with more of a possibility of deadly side effects. We were in combat together. This was the place to give and get a little more strength from each other. Back then some of us went through 48 weeks of treatment with one foot in the grave. As long as there is hep c there will be a place for this forum. "The times they are a changing"and thats a good thing.

Thank you all again!!!



-- Edited by Scruffy on Tuesday 16th of September 2014 04:50:02 PM

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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
hrsetrdr


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Good to see you, Alan! I agree with everyone's comments, and that there will continue to be a need for the type of support and community experience that this forum provides so exceptionally. The treatments may change, and treatment times may become shorter but there will always be people seeking information and solace, in coping with the medical and social/personal issues of having HCV.

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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
news


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I participated very actively on this forum during my treatment. I am not sure why. It certainly had to do with getting comfort from others during the awful side effects. It also had to do with encouraging others who were feeling the same way. And that feeling of belonging to something larger than myself, and not being all alone. Nobody judged me for contracting what was considered by many to be an addict's disease. Also there was the humor of the members, from all over the world, but particularly the Brits and Aussies (please don't take offense). Everyone knows and loves that dry wit. I can only say for sure that I couldn't have made it without my daily visits to this forum. I hope it will remain active and relevant for many years to come.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Groupergetter


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Hopefully this forum isn't closing any time soon.  It gives a lot of hope to those trying to deal with relapse.....and those already on, and starting treatment.   Many thanks to those who help to make this possible.



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Cinnamon Girl


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Hi Malcolm, hi Tig, that is sad I agree.  As time goes on no doubt fewer people with need support as treatments get shorter and easier with much higher success rates and expectations, but I do believe that there will be a need for good quality forums such as this one for a long time yet.

Many people are scared when they receive their diagnosis and need to seek out support from others who will understand and be non-judgmental, as well as looking for reliable information.  And as Malcolm said, there are those who relapse or have other unforeseeable difficulties.  And actually the type of cameraderie and community that a good forum like this can offer to people before, during and post tx is priceless for so many.  Unfortunately there is still a great deal of ignorance and stigma attached to this illness and we can provide a safe haven for anyone who is affected by Hep C and its related issues, and that includes the partners, spouses and friends. 

This forum is still thriving and growing and will continue for as long as it is needed, as far as I`m concerned!

 

 



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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.

 

 
mallani


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I agree, Tig.

Short, successful treatments with few side effects are great and desirable. However, there will be some who relapse and will need support.

The expectation of SVR will be high and we still don't know enough about pre-treatment testing with these new drugs. I hope we can continue for a while. Cheers.



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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
Tig


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Hi Malcolm,

You're right, there seems to be a lot of changes in attitude out there. As the time involved in treatment, as well as the amount and type of side effects people experience diminish, I believe the need (desire) for support will see less participation across many forums. I'm not sure this is going to be a good thing at all... 

Tig



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Tig

68yo 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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mallani


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Hi all,

The Australian Hepatitis C Support Forum has closed. The founder/ owner of the Forum decided she could no longer continue, and was unable to find anyone to take her place.

I checked it out from time to time, but it was mostly a basic Chat Forum, although members had a lot of social interaction. A U.K. Forum has also closed.

I guess as treatments become easier and shorter, HepC patients won't need as much support.



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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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