Re: Telaprevir

[Guest guest]

Hi Jeff

I would be very interested in any links on this topic you could post or send to me by email.

I thought I read somewhere about a mono TX too, but I go through so much info each day, that I forget whats what, or where.

I have re-done the links library 4 times this year to make it more user friendly.

I may have to do it again.

Gad.

love

don in ks

From: Jeff 777 <jeffburns777@...>Subject: [ ] Telaprevir Date: Thursday, November 5, 2009, 5:48 PM

I was in a phase 3 trial with Ifn + Ribavirin + Telaprevir.I dropped out of the trial after 3 wks because of the side effects that I think were caused by Ifn and Ribavirin.Last week, while following links form this group, I found some study results from japan where A 59 yr. old man was cured (SVR) using Telaprevir alone. The report stated that he had a low viral loadand another positive physiological condition that made his cure possible. He also had a short term treatment, about 3 months tx as I recall.Next year in 2010, it is likely that Telaprevir will reciece FDA approval. Then we can try mono-theray with it.The man in Japan had HCV genotype 1b.------------------------------------

[Guest guest]

JeffThere is no way I would promote doing Telaprevir alone. First of all, here in Canada , you have to have 3 bad enzyme readings before our medical will allow you to go on TX. How would you know you still have a low viral count? Plus, actually, the viral count matters a whole lot less than the damage that had been done to your liver and you can only find that out with a biopsy.I'm already on the Clinical Trial with Telaprevir and only have 2-1/2 months to go and it's looking pretty good that I finally cleared the virus. However, I was always going to ask the specialist to explain to me exactly what happens with the already dead part of the liver from cirrhosis. But, then, it appears that I may have a bigger issue to sort out (possible liver

cancer).I sure wouldn't be the least enticed to do Telaprevir alone, based on one man's story. Nope, that kind of thing needs to be followed through all the rigid clinical studies, which is why it's taken so long to bring this Trio onto the market.Gloria

I was in a phase 3 trial with Ifn + Ribavirin + Telaprevir.

I dropped out of the trial after 3 wks because of the side effects that I think were caused by Ifn and Ribavirin.

Last week, while following links form this group, I found some study results from japan where A 59 yr. old man was cured (SVR) using Telaprevir alone. The report stated that he had a low viral load

and another positive physiological condition that made his cure possible. He also had a short term treatment, about 3 months tx as I recall.

Next year in 2010, it is likely that Telaprevir will reciece FDA approval. Then we can try mono-theray with it.

The man in Japan had HCV genotype 1b.

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new

[Guest guest]



Yes Gloria,

where do we go after treatment to repair the damage? I was waiting till after treatment to go down that road.I can only deal with one road at a time...Thanks to you guys I've kept myself in check...no anxiety worrying about what's next...Don't think I've had a panic attack since I joined this group. 1st things 1st. Pam

Re: [ ] Telaprevir

JeffThere is no way I would promote doing Telaprevir alone. First of all, here in Canada , you have to have 3 bad enzyme readings before our medical will allow you to go on TX. How would you know you still have a low viral count? Plus, actually, the viral count matters a whole lot less than the damage that had been done to your liver and you can only find that out with a biopsy.I'm already on the Clinical Trial with Telaprevir and only have 2-1/2 months to go and it's looking pretty good that I finally cleared the virus. However, I was always going to ask the specialist to explain to me exactly what happens with the already dead part of the liver from cirrhosis. But, then, it appears that I may have a bigger issue to sort out (possible liver cancer).I sure wouldn't be the least enticed to do Telaprevir alone, based on one man's story. Nope, that kind of thing needs to be followed through all the rigid clinical studies, which is why it's taken so long to bring this Trio onto the market.Gloria

I was in a phase 3 trial with Ifn + Ribavirin + Telaprevir.I dropped out of the trial after 3 wks because of the side effects that I think were caused by Ifn and Ribavirin.Last week, while following links form this group, I found some study results from japan where A 59 yr. old man was cured (SVR) using Telaprevir alone. The report stated that he had a low viral loadand another positive physiological condition that made his cure possible. He also had a short term treatment, about 3 months tx as I recall.Next year in 2010, it is likely that Telaprevir will reciece FDA approval. Then we can try mono-theray with it.The man in Japan had HCV genotype 1b.

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new

[Guest guest]

Agreed Pam!!! I can only keep my feet on the one path as well!! Right now, with the news my clinician gave me, I'm still focused on being a SVR!! The rest will follow as it comes beginning next January.Gloria



Yes Gloria,

where do we go after treatment to repair the damage? I was waiting till after treatment to go down that road.I can only deal with one road at a time...Thanks to you guys I've kept myself in check...no anxiety worrying about what's next...Don't think I've had a panic attack since I joined this group. 1st things 1st. Pam

Re: [ ] Telaprevir

JeffThere is no way I would promote doing Telaprevir alone. First of all, here in Canada , you have to have 3 bad enzyme readings before our medical will allow you to go on TX. How would you know you still have a low viral count? Plus, actually, the viral count matters a whole lot less than the damage that had been done to your liver and you can only find that out with a biopsy.I'm already on the Clinical Trial with Telaprevir and only have 2-1/2 months to go and it's looking pretty good that I finally cleared the virus. However, I was always going to ask the specialist to explain to me exactly what happens with the already dead part of the liver from cirrhosis. But, then, it appears that I may have a bigger issue to sort out (possible liver cancer).I sure wouldn't be the least enticed to do Telaprevir alone, based on one man's story. Nope, that kind of thing needs to be followed through all the rigid clinical studies, which is why it's taken so long to bring this Trio onto the market.Gloria

I was in a phase 3 trial with Ifn + Ribavirin + Telaprevir.I dropped out of the trial after 3 wks because of the side effects that I think were caused by Ifn and Ribavirin.Last week, while following links form this group, I found some study results from japan where A 59 yr. old man was cured (SVR) using Telaprevir alone. The report stated that he had a low viral loadand another positive physiological condition that made his cure possible. He also had a short term treatment, about 3 months tx as I recall.Next year in 2010, it is likely that Telaprevir will reciece FDA approval. Then we can try mono-theray with it.The man in Japan had HCV genotype 1b.

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[Guest guest]

HI folks,

Thanks for the great info on telaprevir. I did the nasty tx of

interferon/rebatrol in 2007 for 8 months of hell and I was a nonresponder

too. This last year I have had shingles again now for the fourth time and

my doc wants to send me to a hemo/oncologist?? I did make an appt I just

hope all this crap does not began again. I have 2 boys need their mom and I

am the only one working in the household. I really actually like my job for

a change also. Folks just pray for me and hopefully I will get better news

when I go to the next doc.

From: Hepatitis C

[mailto:Hepatitis C ] On Behalf Of

Sent: Monday, April 25, 2011 11:01 AM

Hepatitis C

Subject: Telaprevir

Glen thanks for the update on telaprevir. thanks for your post

regarding insurance companies and who they will or wont pay for. I am a

nonresponder to interferon/Riba...back in 98, I made it through 5 months of

hell and got so sick from treatment it had to be stopped. I never lost the

virus. So I have been waiting for FDA to approve this drug because...

I found out a year ago that my hep c has attacked my liver to the point of

cirrhosis. They told me for years I would be one of the lucky ones this did

not happen to...well here I am. I had to leave my job of 20 years at our

local hospital and now sit and pray to have a day with some energy.

I swore I would never go back on therapy (I had ALL the side effects and

then some). My dr says even if I lose the virus my cirrhosis could

progress, not to mention I am high risk for liver cancer now. Lovely. I

am really nervous now about the rash side effect of telaprevir cause I seem

to get all the side effects.

Well I will dig my heels in and hope for the best. I have to try right?

Mostly worried about the depressive side effects of the Interferon/Riba

treatment...I cried every day for 5 months. Funny how some people just do

the treatment and even continue to work. Guess I am just one of the lucky

ones.

I see my liver doc May 16th and I will update the group on what I will be

doing. Sending healing energy to all!