Re: wanted to share . . ./

[Guest guest]

Hi ,  That is wonderful news that your liver is improving and that your viral tests have been negative since week 5!  Those results must be helping you mentally to get thru treatment; keep up the fantastic job.  Are things tolerable? Prior to treatment, my liver biopsy showed stage 1 to 2 fibrosis, "but questioning whether there may be stage 3 fibrosis".  My viral count was around 330,000.  I decided to try to get into this clinical trial - Vertex phase 3.  There are 3 'arms' or groups . . . 2 receive standard tx plus Telaprivir , one group receiving standard tx only (Rib. & Peg).  Telaprevir is a 'protease inhibitor' which works by hopefully preventing the virus to replicate.  You can google Vertex & Telaprevir to learn more.  The trial is still ongoing and I won't know if I actually received Telaprevir until the end.  I (and my doctor) suspect that I did receive Telaprevir.  Long story, but at week 5, my hemoglobin was at 8.1.  Because of the trial guidelines, my only options to increase my hgb was blood transfusion or temporarily stop the Rib.  Blood transfusions is what got me into this in the first place and I just couldn't agree to that at that time.  So I was taken off the Ribivirin.  I felt so badly and continued to feel worse; my mouth was inflamed, bleeding gums, I could barely brush my teeth and even bland foods burned.  With all the other side effects, I was feeling totally debilitated.  So at week 6, my doctor stopped the Telaprevir/placebo and within a matter of days, my mouth started clearing up and I felt better.  That's why I feel like I did receive the drug.  Eventually my hgb increased enough to get back on the ribivirin.  Hope this wasn't more than you wanted to know  Take good care,LeighI am on week 21 of a ever changing stop date I plan on stopping in 28 weeks if not sooner (I am geno3a) I also am in end stage liver disease altho CT Scans show my liver as getting better. I have been virus negative since week 5 I am taking the standard peginterferon2a/Ribavirin. Can you tell me more about what stage of liver disease you are at and more about this medication? This is truly a miracle!!!!!!Oh and a BIG Congratulations!!!!!!

[Guest guest]

I posted this this morning and realized it never showed up.  Is it Yahoo?  Or maybe because I'm a new member, I'm being moderated?  Just didn't want you to think I was ignoring your question, so I'm trying again.  Sorry if this post shows up twice!  LeighDate: January 28, 2009 8:57:21 AM PSTTo: Hepatitis_C_Central Subject: Re: Re: wanted to share . . ./ Hi ,  That is wonderful news that your liver is improving and that your viral tests have been negative since week 5!  Those results must be helping you mentally to get thru treatment; keep up the fantastic job.  Are things tolerable? Prior to treatment, my liver biopsy showed stage 1 to 2 fibrosis, "but questioning whether there may be stage 3 fibrosis".  My viral count was around 330,000.  I decided to try to get into this clinical trial - Vertex phase 3.  There are 3 'arms' or groups . . . 2 receive standard tx plus Telaprivir , one group receiving standard tx only (Rib. & Peg).  Telaprevir is a 'protease inhibitor' which works by hopefully preventing the virus to replicate.  You can google Vertex & Telaprevir to learn more.  The trial is still ongoing and I won't know if I actually received Telaprevir until the end.  I (and my doctor) suspect that I did receive Telaprevir.  Long story, but at week 5, my hemoglobin was at 8.1.  Because of the trial guidelines, my only options to increase my hgb was blood transfusion or temporarily stop the Rib.  Blood transfusions is what got me into this in the first place and I just couldn't agree to that at that time.  So I was taken off the Ribivirin.  I felt so badly and continued to feel worse; my mouth was inflamed, bleeding gums, I could barely brush my teeth and even bland foods burned.  With all the other side effects, I was feeling totally debilitated.  So at week 6, my doctor stopped the Telaprevir/placebo and within a matter of days, my mouth started clearing up and I felt better.  That's why I feel like I did receive the drug.  Eventually my hgb increased enough to get back on the ribivirin.  Hope this wasn't more than you wanted to know  Take good care,LeighI am on week 21 of a ever changing stop date I plan on stopping in 28 weeks if not sooner (I am geno3a) I also am in end stage liver disease altho CT Scans show my liver as getting better. I have been virus negative since week 5 I am taking the standard peginterferon2a/Ribavirin. Can you tell me more about what stage of liver disease you are at and more about this medication? This is truly a miracle!!!!!!Oh and a BIG Congratulations!!!!!!

[Guest guest]

Thanks Leigh for posting this. I think this is the study that I am going to see about on my appt. on the 5th of March.

It is good to get some insight going in.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

I am on week 21 of a ever changing stop date I plan on stopping in 28 weeks if not sooner (I am geno3a) I also am in end stage liver disease altho CT Scans show my liver as getting better. I have been virus negative since week 5 I am taking the standard peginterferon2a/ Ribavirin. Can you tell me more about what stage of liver disease you are at and more about this medication? This is truly a miracle!!!!! !Oh and a BIG Congratulations! !!!!!

[Guest guest]

Yes, hon all new members are moderated.

Let me explain why.

All new members are moderated because when I started this group long long time ago. *smile*

I had a problem with spambots. You know those emails that show up in your inbox spouting about this and that. And Hi my name is

______ I want to chat with you. Those things are just a pain in

my and all of our keisters.

Then I kept it in place as a way of making sure that they were not

here to promote products and such stuff as that.

I am sure that you will be taken off of moderation soon.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

I am on week 21 of a ever changing stop date I plan on stopping in 28 weeks if not sooner (I am geno3a) I also am in end stage liver disease altho CT Scans show my liver as getting better. I have been virus negative since week 5 I am taking the standard peginterferon2a/ Ribavirin. Can you tell me more about what stage of liver disease you are at and more about this medication? This is truly a miracle!!!!! !Oh and a BIG Congratulations! !!!!!

[Guest guest]

Janet,  that's very exciting; I so hope this works out for you. I don't have the exact numbers on hand, but my doctor went over the results of a previous trial (phase 2?) using Telaprevir and the response rates were better than SOC treatment.  Maybe you want to ask your doctor if he has those figures.Hugs,  LeighThanks Leigh for posting this. I think this is the study that I am going to see about on my appt. on the 5th of March.It is good to get some insight going in.LoveJanet"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"Frederick Faber  . 

[Guest guest]

I totally understand and you can moderate me as much as you want . . . somebody has to!  lolLeighYes, hon all new members are moderated.Let me explain why.All new members are moderated because when I started this group long long time ago. *smile*I had a problem with spambots. You know those emails that show up in your inbox spouting about this and that. And Hi my name is______ I want to chat with you.  Those things are just a pain inmy and all of our keisters.Then I kept it in place as a way of making sure that they were nothere to promote products and such stuff as that.I am sure that you will be taken off of moderation soon.LoveJanet"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"Frederick Faber  

[Guest guest]

Thank you for being so understanding Leigh. We've had so many behind the scenes issues to deal with, it's nice to have such understanding members.

Luv

anne

(moderator)

You don't have to be handicapped to be different.Everybody's different!Kim Peek

Re: Re: wanted to share . . ./

I totally understand and you can moderate me as much as you want . . . somebody has to! lol

Leigh

Yes, hon all new members are moderated.

Let me explain why.

All new members are moderated because when I started this group long long time ago. *smile*

I had a problem with spambots. You know those emails that show up in your inbox spouting about this and that. And Hi my name is

______ I want to chat with you. Those things are just a pain in

my and all of our keisters.

Then I kept it in place as a way of making sure that they were not

here to promote products and such stuff as that.

I am sure that you will be taken off of moderation soon.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

[Guest guest]

So totally agree with anne.

Thank you again Leigh for your understanding.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

Yes, hon all new members are moderated.

Let me explain why.

All new members are moderated because when I started this group long long time ago. *smile*

I had a problem with spambots. You know those emails that show up in your inbox spouting about this and that. And Hi my name is

______ I want to chat with you. Those things are just a pain in

my and all of our keisters.

Then I kept it in place as a way of making sure that they were not

here to promote products and such stuff as that.

I am sure that you will be taken off of moderation soon.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber