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Post Info TOPIC: Canadian Site on Hep C?
Iris Dragonfly


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RE: Canadian Site on Hep C?
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P.s. I wanted to add, the 'viral load' is  just an easier way of saying Quantitative Polymerase Chain Reaction. This test is likely the same in Canada...qPCR. It reflects the amount of viral copies your liver is producing. If your are not on treatment, it really doesn't matter what these numbers are. This test used to see if the treatment is reducing the copies.

I.D.



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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)
Iris Dragonfly


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Emm,

spiritually speaking, the "why" of this disease is no consequence. It is here and now we must learn to flow with it. We can let it take us downstream like gravel, or we can learn to be the boulder in the river, and do our nutritional part to stay strong.

Those who have taken the leap into the rapids of treatment are about the strongest, bravest most heroic people you will meet. They have conquered the beast in the blaze, and have quenched the fire that raged within, a move that will keep them from ever getting to late stages of liver failure.

When the river of East and West meet, and the gentle eddies of both ideas are working in harmony, then I imagine we will all be on that boat.

Until then.... those who are treatment naive are struggling,... those on various trials and therapy are struggling, and those who's treatment didn't work are struggling. We need to remain positive here. Because any way you look at it...there is a waterfall downstream....and we can get out of the water now, or hope to get snagged while they lenghten the river.

When the river is blocked by the dam, the water can become stagnant, when it is allowed to flow freely, it is open to more banks of possibilities.

Iris Dragonfly

 



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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)
52baddog


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Emm:

My goodness, what difference does it make where we are from???? We are all infected with the same disease. 

Please, be a little bit more compassionate towards the people who are going through this difficult treatment.

Thank you.



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Geno type 1b, F1 vl 640,000 enrolled in Gilead's sofosbuvir/ledipasvir -week 1 66, week 2 <25
mallani


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Emm,

I am sorry that your 'immense knowledge' is confined to what your doctor told you. We have several Canadian Members, who all are aware of what their Viral Load is, and they are seeking a cure for HCV.

You are entitled to your decision not to be treated. Your 'holier-than thou' approach is an affront to our Members who are struggling though difficult treatments. As you said ' I do not think this Forum is appropriate for me', and I agree.

For your information, Cinnamon Girl is the Forum Owner and I am one of the Moderators.



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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
Emm


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Malawi I am canadian and we have different ways. My doctor had never mentioned "viral load" to me. This us not a term I am familiar with. You can keep your hostility to your self. I am doing very well for having this virus for 40+ years. Maybe you need to learn some new ways and thinking.

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mallani


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Emm,

I find your posts depressing and contradictory.

You claim to have 'an immense knowledge about hepC' but 'do not understand the viral load jargon'. You 'have had hepC for 40 years' but only 'found out 6 years ago'. You are cirrhotic but do not want Rx.

Our Forum members are serious about getting Rx for this potentially fatal disease. You can rant about the holistic approach and treat the virus on the spiritual level, but please do it somewhere else.



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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
Emm


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I have an immense amount of knowledge about hep C and tx available. It is just that I do not focus entirely on the physical. Your answer tells me that this is definitely not the place for me or for anyone who wants to understand the "why's" of contracting a serious degenerative condition in the first place. I seek a more holistic approach and I do not devalue anyone's efforts or fears re hepC it is that I know the effects taking a "battle" stance has on the spiritual level. It prevents healing. I will not share what I have learned since it is suggested i should find another forum. I will not bother for these are all the same. On a spiritual level strong emotion cements the condition into the physical state. The physical is only one aspect. Being emotionally neutral allows internal healing to take place. This is why I am in stage 4 and able to still be out and about and enjoy life. I have had 2 near death experiences, in hospital, during the past 3.5 years and learned a lot.

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Cinnamon Girl


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Hi Emm, of course it`s your choice whether or not you want to educate yourself about Hep C and look into treatment for it, and no-one here would try and coerce you into doing that.  But you should know that what you see as `pride` is the result of our members valuing their lives and fighting a hard battle to restore their health.  That should not be underestimated or undervalued by anyone as it`s a huge achievement to clear the virus or at least try.

This forum welcomes anyone who is affected by Hep C, and the good people here have reached out to you, but if it`s not what you`re looking for then best of luck with finding somewhere more to your taste.   

Cheers, Jill



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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.

 

 
Emm


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I do not think this forum is appropriate for me. I do not want to vent and I certainly do not want to complain about my husband or anything else. I will not change my mind about treatment because it would kill me for sure and I am obviously alive now. Why mess with a good thing? I do not believe in transplants and have fought to be allowed to die of natural causes. Doctors are befuddled by my continued ability to rise up from near death so I would suggest I am doing OK going by that. Death is not my enemy nor nemesis. I do not fear this necessary and eventual transition. Since death is inevitable and natural i do not fear it nor fight it. I am not engaged in battle. I suppose that I seek a more spiritual communication, not religious for I am not into that, but acceptance of what is and discussion of varying emotions. The evolution of formally hard-held beliefs that have been shattered by the hepC experience. The psychological aspects of chronic disease and its impact and what new healthier understandings are derived from all of this over time. It seems to me that everyone in here is focused on the disease so intensely that there is no room to step outside the box to gain insight into the "why" of the hepC journey. I want to delve into more aspects of this experience than the physical. Again, i do not understand the blood stuff and the weird numbers and all. It is as if it is a "pride" issue. I do not quite know how to explain what I mean and this tells me that I will not find a forum to meet my needs here or anywhere else.

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tomyboy


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Welcome, you have found a wonderful forum.  Although we are not all Canadian's on this site, we all have our own issues. I feel for your situation and I think you would benefit greatly from the people on this forum as they are ALL a wealth of knowledge. You can also come on this place to vent, as I do often about my husband, and everyone gives  advise and support when you need it.  Welcome, and please snoop around the forum.  You will find out a lot of information and you may change your mind about treatment.  Best of luck to you. 



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Emm


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Just so you know the prior post is to you mallani. Spellcheck distorted your title.

This post is for you again and for Cinnamon Girl just in case you do not know about the rules in here.

If either of you express hostility or harass me again you will be reported.  Put that in your viral load.

 

Unfortunately one of our members has been subjected to bullying for expressing her opinions on the use of herbal supplements to support the liver. Dori has had a traumatic experience whilst on tx and was in no way advising people to replace combo therapy with herbal remedies, just posting about her use of certain herbs to support liver function.

People have a right to express their opinions, without being subjected to abuse or ridicule.

I would like to remind everyone about the forum rules :

http://www.activeboard.com/forum.spark?forumID=114015&p=3&topicID=13072930


The forum is here to support anyone affected by Hep C and verbal attacks on others will not be tolerated and will result in membership being withdrawn.


-- Edited by greenqueen on Thursday 28th of October 2010 09:19:21 AM
 

 

 



-- Edited by Emm on Friday 1st of March 2013 01:08:52 AM



-- Edited by Emm on Friday 1st of March 2013 01:27:29 AM

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Biggyb


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It's absolutely not just for Canadians. It's for people struggling with or getting cured of the Hep c virus. We are from all walks of life. Click on http://hepcfriends.activeboard.com/p/members/  for a world map of all the members.



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
2willy


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Hope you have better luck than I have, most of sites espacially in Ontario Canada are crap along with the advice stay away from the Hep C Secutariat as they do not follow up on any comments

Bill



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Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013
Emm


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confuseI want to converse with Canadians because the US has different system of monitoring and treatment which means absolutely nothing to me.  It is confusing gibberish to my eyes and brain, so, if this is not exclusively Canadian would someone please forward me to a Canadian site on Hep C. 

Thanks



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Emm


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Hi, but is this a Canadian HepC forum?  I am a very cautious person when it comes to advice and mysterious info.  Have had HepC for 40 years, the docs figure, and refused treatment because I know it would kill me.  Also, refused 2 offers of liver transplant: first: 3.5 years ago and 5 months ago.  Figure that would kill me too.  I just want to discuss effects of chronic illness on emotional, psychological and spiritual level with folk. Have been handling this challenge with proper nutrition and herbal supplements.  found out about it 6 years ago!!  At least I know why I would lose all energy and almost collapse in mid of a heavy workout in gym now.  Hee!

 

I am considered Stage 4.  I am not worried about it and husband handling all remarkably well.  Came very close to death twice in past 4 years. 



-- Edited by Emm on Wednesday 27th of February 2013 12:22:29 AM

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