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Hep C Discussion Forum -> On Treatment -> When to treat?
Post Info TOPIC: When to treat?
jimbob


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RE: When to treat?
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You don't understand Duane, I've inserted foot in mouth so many times in the past, you'd think it was my ambition in life. (:

I too miss beer! As Scruffy said recently, it gets easier after a while, and it does, but I still have a small craving to be involved in those holiday toast.

That's a profound statement you make in the last paragraph regarding self and influence. I still cringe sometimes thinking how many I might have unknowingly influenced years ago,...just striving to do better now, and to be responsible, as you mentioned.

Ditto on them grandkids! Nothing makes me prouder than to see those two. I get the biggest grin on my face....

To our health Duane, and everyone else's on here. I'm hoping that 'one shot cure' is fast approaching.
jimbob



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jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
Dzdayscomin


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HAHAHAHA.....Offended..... ur killin me!

I have got such a different outlook on what I allow to bother me these days, that you'd have to poke me in the same eye twice just to wipe the smile off my face.

I miss beer, but I miss not feeling good more, so it's never been a problem to just say no to it....I drink a lot of kool aid I actually like it, I'm sure the sugar isn't so good but it isn't that bad either.

I also had a friend that is gone because he didn't quit drinking, didn't take his diuretics, must have thought he could dodge this thing...but we all know you can't, it's a life changer.

He was on the transplant list for a whole 1 day, and then he died because he wasn't going to do what was needed to be eligible for transplant...had he been compliant he'd likely be around today.

We can only manage ourselves, and realize our decisions effect so many of those around us that it is selfish not to do the right things, plus I got a granddaughter and another grandchild on the way and I'll be darned if I'm gonna miss out on that action

 

Duane

 



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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.
jimbob


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Hi Duane.

I agree with you completely. Had alcohol not made me sick back then, I would have continued drinking heavily and my circumstances would likely have been very different. Believe me Duane, I tried different kinds of alcohol hoping I could drink ,... I didn't want to stop.

In '96, I and some of my close friends discovered we had Hcv. They continued to drink and I had already stopped. We elected, at the time, to wait for a better tx due to the existing harsh sx. I'm here today and they're not. So, I hope you understand my conclusion. That's the only one I have.

I sincerely hope I haven't offended you or anyone else here. That certainly wasn't my intent. I was simply stating an opinion based on my personal beliefs and experience, which consists largely of touching hot objects.

I hope you will receive the goods news of "UND" soon Duane.

__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
Dzdayscomin


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I wish I had known long before I did, I wouldn't have cirrhosis and could have made real life style changes that would have saved my liver from further damage. I only drank beer and in social settings or out fishing etc... but like was said before any alcohol is poison to a damaged liver.

Hoping to hear in the next day or two that I am UND, but I will always have problems and likely be on diuretics for life or until transplant at which time it's just a trade to anti rejection drugs.

 

So although I didn't have to take the draino drugs to cure it earlier, in the grand scheme of things the pain would have been worth the gain.

 

I guess to answer the question ..from my perspective I would treat ASAP of positive diagnosis.....you don't want cirrhosis.....ever ! it sucks !

 

Duane



__________________

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.
jimbob


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Good morning David.

I think this is a personal decision based on circumstances, i.e. biopsies, physicans, bloodwork etc. While I agree with Malcolm regarding the S/L combo, many of us avoided the early txs based on the horror stories, the tx success rates(what, 40%?), and the conditions of our livers at the time.

Inoticed our stories are very similar, but you said you "slowed way down on alcohol. " Alcohol, even in moderation, is like "putting out fire with gasoline "with HCV. I quit in '87 as alcohol started making me violently ill. Long before I even knew I had the disease (1996). I'm convinced this slowed the progression of HCV in my case. After learning I had HCV, I had yearly blood work, periodic biopsies and spoke to many specialists. Based on the unnoticeable progression of my disease, was told by the more prominent docs that I could wait. Although I'm still waiting to see if I've achieved SVR, I'm glad I waited for the shorter ,92% success rate (again, fingers crossed). I am aware that many out there couldn't wait.

My brother once told me, "If ifs and buts were candies and nuts, we' d all have a nice Christmas." We did what we did, and we are where we are. I'd like to think it's for a reason....

Congrats and good luck David.



-- Edited by jimbob on Tuesday 10th of June 2014 06:19:41 PM



-- Edited by jimbob on Tuesday 10th of June 2014 06:38:25 PM

__________________

jimbob: 64 y/o, GT 1A, F1-F2, diagnosed 1996. Since 1970. SOT 3.5 mil VL on 3/10/14 with Sov/Rib/Peg for 12 weeks. Tx naive. UND @ week 4,8,12. EOT 6/2/14.
mallani


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Hi David,

The answer to the when to treat question will soon be answered. When Sovaldi/Ledispavir is available the answer will be 'immediately'. In the USA, the Insurance Cos will have to agree, and in the rest of the world the answer will be less obvious. Compassionate use is only for those in imminent liver failure. Your doctor was wrong with his 'it's not that bad' approach. You may have been able to clear the virus with Peg/Riba or the early DAA's. However, the irreparable liver damage is not certain. Some of us are seeing promising signs that liver damage may be repaired. We in the 'rest of the world' will just have to hope that Merck or Abbvie come up with the right price.



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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
Barnacle


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I was pondering my long association with hep C. I have had it since the early 70s and known I had it since the early 90s. For many years there was very little evidence of it other than certain liver enzymes and blood anomalies likely due to liberal use of alcohol. My Dr would feel my liver, we did ultrasounds and blood tests and he would say it's not really that bad that we need to treat. Then even though I slowed way down on alcohol and started taking better care of myself my disease progressed to the point that when I finally got a fibroscan I hade a score of 14kpa which is apparently well progressed fibrosis. I had not had a biopsy previous because my Dr kept saying it;s not that bad.

So the good news was my disease had progressed to the point where I was able to get access to the high power, off-label treatments recently available. The bad news is having to wait so long had done irreparable damage to my liver which I may have avoided if treated sooner. Of course the treatments available earlier were not so easy to take.

 

Here's to hoping that effective treatment started earlier in the disease progression will mean others don't havve to suffer as long as I did with this.

 



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57yo male gen 1a since '70s. Fib F3-4 VL >2M Tx started 5 Apr 14 Sov/Oly/Rib

wk 4 UND wk 8 UND, wk 12 EOT UND...keep em coming 24wks UND = SVR!
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