Hello/ I'm new

[Guest guest]

My name is Rita and I have Hep C 1b stage 3 fibrosis. Been through 2

rounds of Peg/Riba - the first round I rebounded as soon as I

stopped meds. The second round was thru a study and I failed to

clear. I am now in a study that was 36 months with low dose Peg - I

will be done with this study next month and then another liver

biopsy to see if the low dose may have protected my liver from

further damage or maybe improved it. They almost stopped this study

but decided to continue. So I am thinking they don't have much faith

in it. If I hadn't been in this study I would have been put in the

new one with the protease inhibitor... I think that would have been

good but don't know if I could deal with the symptoms from the

higher dose of Peg and the Riba again.... I think the ribaviron made

me sicker than the Peg. (I also think it made me mean, I go off for

nothing)

I don't know what is next. Maybe nothing - just blood work every 6

months and watching. I don't know if I would want to do another

study at this time. I have been on meds for 4 years now. I am weary

of it. The aches, fatigue, fog brain. But I hear these are also

symptoms of Hep C. BUT for a short while between meds... I felt

better! I think I'm ready for a break from meds.

During my first round of treatment I was also grieving the death of

my 21 year old son from a car accident. It's been 7 years since that

and I am still grieving but it is a softer grief now. Sometimes I

think it would be okay to join him. Other times I want to stay and

be with the ones still here. And my grandkids. But I am not afraid

of dying... just afraid of the pain it may cause. Well didn't mean

to bring anyone down - just telling my story. I am fine with

whatever God decides for me.

Thanks and glad to meet ya'll.

Rita

[Guest guest]

Welcome to the Group, Rita! You have sure been through it, as so many here have.. You have come to the right place, people do care here.. For myself, when my dragon is wide awake, I also have the mean streaks, and I hate those..I think they get worse when we're on Riba, as there is a serious battle going on.. I am so sorry for the loss of your son, my heart goes out to you. Having lost my firstborn son, I well know that only time can help heal, often.a very long time.. Hang in, having Grandkids in awesome.. Take care of you.. Hugs, Sheena manytearsofspring <manytearsofspring@...> wrote: My name is Rita and I have Hep C 1b stage 3 fibrosis.

Been through 2 rounds of Peg/Riba - the first round I rebounded as soon as I stopped meds. The second round was thru a study and I failed to clear. I am now in a study that was 36 months with low dose Peg - I will be done with this study next month and then another liver biopsy to see if the low dose may have protected my liver from further damage or maybe improved it. They almost stopped this study but decided to continue. So I am thinking they don't have much faith in it. If I hadn't been in this study I would have been put in the new one with the protease inhibitor... I think that would have been good but don't know if I could deal with the symptoms from the higher dose of Peg and the Riba again.... I think the ribaviron made me sicker than the Peg. (I also think it made me mean, I go off for nothing)I don't know what is next. Maybe nothing - just blood work every 6 months and watching. I don't know if I

would want to do another study at this time. I have been on meds for 4 years now. I am weary of it. The aches, fatigue, fog brain. But I hear these are also symptoms of Hep C. BUT for a short while between meds... I felt better! I think I'm ready for a break from meds. During my first round of treatment I was also grieving the death of my 21 year old son from a car accident. It's been 7 years since that and I am still grieving but it is a softer grief now. Sometimes I think it would be okay to join him. Other times I want to stay and be with the ones still here. And my grandkids. But I am not afraid of dying... just afraid of the pain it may cause. Well didn't mean to bring anyone down - just telling my story. I am fine with whatever God decides for me.Thanks and glad to meet ya'll.Rita __________________________________________________

[Guest guest]

Welcome Rita , I am so sorry you had to lose a son and I understand about the grief . I lost my brother 25yrs ago and I still cry for him . Anyway welcome to the group .

Hello/ I'm new

My name is Rita and I have Hep C 1b stage 3 fibrosis. Been through 2 rounds of Peg/Riba - the first round I rebounded as soon as I stopped meds. The second round was thru a study and I failed to clear. I am now in a study that was 36 months with low dose Peg - I will be done with this study next month and then another liver biopsy to see if the low dose may have protected my liver from further damage or maybe improved it. They almost stopped this study but decided to continue. So I am thinking they don't have much faith in it. If I hadn't been in this study I would have been put in the new one with the protease inhibitor... I think that would have been good but don't know if I could deal with the symptoms from the higher dose of Peg and the Riba again.... I think the ribaviron made me sicker than the Peg. (I also think it made me mean, I go off for nothing)I don't know what is next. Maybe nothing - just blood work every 6 months and watching. I don't know if I would want to do another study at this time. I have been on meds for 4 years now. I am weary of it. The aches, fatigue, fog brain. But I hear these are also symptoms of Hep C. BUT for a short while between meds... I felt better! I think I'm ready for a break from meds. During my first round of treatment I was also grieving the death of my 21 year old son from a car accident. It's been 7 years since that and I am still grieving but it is a softer grief now. Sometimes I think it would be okay to join him. Other times I want to stay and be with the ones still here. And my grandkids. But I am not afraid of dying... just afraid of the pain it may cause. Well didn't mean to bring anyone down - just telling my story. I am fine with whatever God decides for me.Thanks and glad to meet ya'll.Rita

[Guest guest]

Hi Rita, Welcome to the group,,, nice to meet you. I am jackie or jax, one of the co-owners and moderators here on this forum. I treated my hep over 5 years ago, finished tx 4 years ago last feb/march and am still SVR. I have lots of left over damage from treatment but I am clear of the virus. I am geno 1a and was stage 3-4 with early cirrhosis and grade 3 inflammation when I was diagnosed.. the last biopsy I had said stage 2-3 so my liver has repaired itself somewhat. I sure hope they come out with something new for all those who either were non responders or relapsed so everyone can reach SVR. once gain, welcome jaxmanytearsofspring <manytearsofspring@...> wrote: My name is Rita and I have Hep C 1b stage 3 fibrosis. Been through 2 rounds of Peg/Riba - the first round I rebounded as soon as I stopped meds. The second round was thru a study and I failed to clear. I am now in a study that was 36 months with low dose Peg - I will be done with this study next month and then another liver biopsy to see if the low dose may have protected my liver from further damage or maybe improved it. They almost stopped this study but decided to continue. So I am thinking they don't have much faith in it. If I hadn't been in this study I would have been put in the new one with the protease inhibitor... I think that would have been good but don't know if I could deal with the symptoms from the

higher dose of Peg and the Riba again.... I think the ribaviron made me sicker than the Peg. (I also think it made me mean, I go off for nothing)I don't know what is next. Maybe nothing - just blood work every 6 months and watching. I don't know if I would want to do another study at this time. I have been on meds for 4 years now. I am weary of it. The aches, fatigue, fog brain. But I hear these are also symptoms of Hep C. BUT for a short while between meds... I felt better! I think I'm ready for a break from meds. During my first round of treatment I was also grieving the death of my 21 year old son from a car accident. It's been 7 years since that and I am still grieving but it is a softer grief now. Sometimes I think it would be okay to join him. Other times I want to stay and be with the ones still here. And my grandkids. But I am not afraid of dying... just afraid of the pain it may cause. Well didn't

mean to bring anyone down - just telling my story. I am fine with whatever God decides for me.Thanks and glad to meet ya'll.RitaJackie

[Guest guest]

Hi Rita, Welcome to the group,,, nice to meet you. I am jackie or jax, one of the co-owners and moderators here on this forum. I treated my hep over 5 years ago, finished tx 4 years ago last feb/march and am still SVR. I have lots of left over damage from treatment but I am clear of the virus. I am geno 1a and was stage 3-4 with early cirrhosis and grade 3 inflammation when I was diagnosed.. the last biopsy I had said stage 2-3 so my liver has repaired itself somewhat. I sure hope they come out with something new for all those who either were non responders or relapsed so everyone can reach SVR. once gain, welcome jaxmanytearsofspring <manytearsofspring@...> wrote: My name is Rita and I have Hep C 1b stage 3 fibrosis. Been through 2 rounds of Peg/Riba - the first round I rebounded as soon as I stopped meds. The second round was thru a study and I failed to clear. I am now in a study that was 36 months with low dose Peg - I will be done with this study next month and then another liver biopsy to see if the low dose may have protected my liver from further damage or maybe improved it. They almost stopped this study but decided to continue. So I am thinking they don't have much faith in it. If I hadn't been in this study I would have been put in the new one with the protease inhibitor... I think that would have been good but don't know if I could deal with the symptoms from the

higher dose of Peg and the Riba again.... I think the ribaviron made me sicker than the Peg. (I also think it made me mean, I go off for nothing)I don't know what is next. Maybe nothing - just blood work every 6 months and watching. I don't know if I would want to do another study at this time. I have been on meds for 4 years now. I am weary of it. The aches, fatigue, fog brain. But I hear these are also symptoms of Hep C. BUT for a short while between meds... I felt better! I think I'm ready for a break from meds. During my first round of treatment I was also grieving the death of my 21 year old son from a car accident. It's been 7 years since that and I am still grieving but it is a softer grief now. Sometimes I think it would be okay to join him. Other times I want to stay and be with the ones still here. And my grandkids. But I am not afraid of dying... just afraid of the pain it may cause. Well didn't

mean to bring anyone down - just telling my story. I am fine with whatever God decides for me.Thanks and glad to meet ya'll.RitaJackie

[Guest guest]

Hi Rita! I hardly ever visit this website but was here today & saw

your posting. I will say that I have never been on any treatment for

my Hep C due to my low platelet count shortly after being finally

diagnosed (after 30+ yr fr intital exposure). I am on the Transplant

Waiting List and have been for 9 yrs NOW. And have had " End-Stage

Liver Cirrohis all that time! I don't know what my viral load has

ever been since I was not considered as a good candidate for drug

therapy due to the platelet factor. My liver function has fluctuated

widely over the past 9 yrs and has now, actually, gotten better than

it's been in the last 5 yrs!! I don't know why, neither do they.

When I was first " listed " for Transplantation with 2 separate

hospitals, I asked how long they " thought " I had to live without a

transplant. They told me about 2 yrs!!!! That pretty much ruined my

life, since I became what I call a " professional patient " w/self

educating and all of their quarterly testing and traveling to these

hospitals! I've spent over $400,000.00 in medical benefits and

really have nothing to show for it. Thankfully, I've gotten better

on my own w/o a transplant so far. Thankfully, I have a very

qualified local GI doc that takes care of my " brain fog " & monitors

me as I use few medications. Also, FYI, when I asked him if

Interferon therapy could " turn against you " and do harm, he

answered, " YES, it can kill you " . I opted to not even try it

especially since he said he'd have to pull me off of it since my

platelets would quickly plummet to the stop treatment point BEFORE

I'd been on it long enough to have the " 50% chance of curing " that it

truely carrys. The other statistic's are inflated by the drug

mfgrs. Hope this info helps you and gives you pause to ponder the

priorities in your life, as I have recently reflected. You are not

alone...WE are here with you. GeoGirl102

>

> Welcome Rita , I am so sorry you had to lose a son and I understand

about the grief . I lost my brother 25yrs ago and I still cry for

him . Anyway welcome to the group .

> Hello/ I'm new

>

>

> My name is Rita and I have Hep C 1b stage 3 fibrosis. Been

through 2

> rounds of Peg/Riba - the first round I rebounded as soon as I

> stopped meds. The second round was thru a study and I failed to

> clear. I am now in a study that was 36 months with low dose Peg -

I

> will be done with this study next month and then another liver

> biopsy to see if the low dose may have protected my liver from

> further damage or maybe improved it. They almost stopped this

study

> but decided to continue. So I am thinking they don't have much

faith

> in it. If I hadn't been in this study I would have been put in

the

> new one with the protease inhibitor... I think that would have

been

> good but don't know if I could deal with the symptoms from the

> higher dose of Peg and the Riba again.... I think the ribaviron

made

> me sicker than the Peg. (I also think it made me mean, I go off

for

> nothing)

>

> I don't know what is next. Maybe nothing - just blood work every

6

> months and watching. I don't know if I would want to do another

> study at this time. I have been on meds for 4 years now. I am

weary

> of it. The aches, fatigue, fog brain. But I hear these are also

> symptoms of Hep C. BUT for a short while between meds... I felt

> better! I think I'm ready for a break from meds.

>

> During my first round of treatment I was also grieving the death

of

> my 21 year old son from a car accident. It's been 7 years since

that

> and I am still grieving but it is a softer grief now. Sometimes I

> think it would be okay to join him. Other times I want to stay

and

> be with the ones still here. And my grandkids. But I am not

afraid

> of dying... just afraid of the pain it may cause. Well didn't

mean

> to bring anyone down - just telling my story. I am fine with

> whatever God decides for me.

>

> Thanks and glad to meet ya'll.

> Rita

>

[Guest guest]

Hi Rita, So nice to meet you - my name is , I have been a member of this group for 3 or 4 years now, but I have been away for awhile now. Like you, I treated my hep-c several times, first time I treated, I went into remission at 11 weeks, but moved, lost my insurance and therefore had to stop the treatment, this was in 2004. In Jan 2006, I found out that is was back and with a vengeance. Oh, I forgot to tell you, I am geno 1a, last biopsy in 7/06 I was stage 2 grade 2 fibro. Ok, so I started TX again in 7/06, but by Jan of this year I was very ill, I did however clear at 11 weeks, but in Jan they had to stop the TX as my viral load was back and the sides were horrific. I was on so many medication for the sides and was just so tired of Doctors and medications - where as now, I am just thrilled to be off of everything, and moving forward with my life. I just had my viral load checked last week, and it was 556,000 - which might seem high to some, but it was over 7 million in January this year. I have been taking milk thistle, and a multi vitamin w/out iron and I try and eat right, drink lots of water and just take as good of care as I can of myself. I too lost a loved one in March of this year and then again took a loss in August - it was very difficult, but I can't imagine loosing a child - for you loss I so..............very sorry for you..... Please know that I will keep you in my heart and prayers... My doctor told me last week that I needed to try and keep my stress level to a bare mininum as my RA is being affected as well - but it is much easier said than done. LIke you - I am not afraid of dying, and at one time, I think I was ready to give up and go home, however, I too have children and the most precious grandkids, that I wouldn't want to hurt for nothing.... We have allot to live for - our kids and our grand kids need us more than we probably know or realize.... Please know that you are in a good place here, and we are here for you... Take care of you and May God bless you and yours Luv, hug, and prayers, Marie -- Re: Hello/ I'm new Hi Rita, Welcome to the group,,, nice to meet you. I am jackie or jax, one of the co-owners and moderators here on this forum. I treated my hep over 5 years ago, finished tx 4 years ago last feb/march and am still SVR. I have lots of left over damage from treatment but I am clear of the virus. I am geno 1a and was stage 3-4 with early cirrhosis and grade 3 inflammation when I was diagnosed.. the last biopsy I had said stage 2-3 so my liver has repaired itself somewhat. I sure hope they come out with something new for all those who either were non responders or relapsed so everyone can reach SVR. once gain, welcome jaxmanytearsofspring <manytearsofspring > wrote: My name is Rita and I have Hep C 1b stage 3 fibrosis. Been through 2 rounds of Peg/Riba - the first round I rebounded as soon as I stopped meds. The second round was thru a study and I failed to clear. I am now in a study that was 36 months with low dose Peg - I will be done with this study next month and then another liver biopsy to see if the low dose may have protected my liver from further damage or maybe improved it. They almost stopped this study but decided to continue. So I am thinking they don't have much faith in it. If I hadn't been in this study I would have been put in the new one with the protease inhibitor... I think that would have been good but don't know if I could deal with the symptoms from the higher dose of Peg and the Riba again.... I think the ribaviron made me sicker than the Peg. (I also think it made me mean, I go off for nothing)I don't know what is next. Maybe nothing - just blood work every 6 months and watching. I don't know if I would want to do another study at this time. I have been on meds for 4 years now. I am weary of it. The aches, fatigue, fog brain. But I hear these are also symptoms of Hep C. BUT for a short while between meds... I felt better! I think I'm ready for a break from meds. During my first round of treatment I was also grieving the death of my 21 year old son from a car accident. It's been 7 years since that and I am still grieving but it is a softer grief now. Sometimes I think it would be okay to join him. Other times I want to stay and be with the ones still here. And my grandkids. But I am not afraid of dying... just afraid of the pain it may cause. Well didn't mean to bring anyone down - just telling my story. I am fine with whatever God decides for me.Thanks and glad to meet ya'll.RitaJackie

[Guest guest]

Hello Rita, I hope you don't mind me writing you, but after I read your letter - I was so compelled to write you. First, I want to say congrats to you for doing so well... You are a "rainbow of HOPE" for all of us.. I am just totally amazed of how well you have done, and yet you have actually been at the point to be on the transplant list for 9 years - I must say, that is unheard of even at this day and age. You have got to be doing all the right things. With that said - is there things that you can say that you have done specifically to help your live in healing it's self - besides the obvious?? I did the treatment 2 different times, and I am geno 1a and am not in remission. The last time I did treatment, I became very ill from the chemotherapy, actually it almost killed me - so they had to stop treatment, although I was responding. Since this time, stopping treatment, my viral load was well over 7 million, last week they tested me again and it was only 550,000. I try to research all the time, and take milk thistle and vitamins w/out the iron, I drink lots of water and such. And I know that stress does play a major factor too - but controlling our stress is a little easier said than done. Is their anything that you can attribute to your condition on, certain things that you do, or things you stay away from? Again - WOW - I am just totally blown away with how well you have done, keep up the Amazing work, and when you have time if you could drop me a line that would be great. I am not new to the group, it's just been awhile since I have been here.... I am so glad to be back... Hello to everyone that I haven't talked to in so long May God continue to bless you and yours Luv, hugs and prayers to all Marie -- Re: Hello/ I'm new Hi Rita! I hardly ever visit this website but was here today & saw your posting. I will say that I have never been on any treatment for my Hep C due to my low platelet count shortly after being finally diagnosed (after 30+ yr fr intital exposure). I am on the Transplant Waiting List and have been for 9 yrs NOW. And have had "End-Stage Liver Cirrohis all that time! I don't know what my viral load has ever been since I was not considered as a good candidate for drug therapy due to the platelet factor. My liver function has fluctuated widely over the past 9 yrs and has now, actually, gotten better than it's been in the last 5 yrs!! I don't know why, neither do they. When I was first "listed" for Transplantation with 2 separate hospitals, I asked how long they "thought" I had to live without a transplant. They told me about 2 yrs!!!! That pretty much ruined my life, since I became what I call a "professional patient" w/self educating and all of their quarterly testing and traveling to these hospitals! I've spent over $400,000.00 in medical benefits and really have nothing to show for it. Thankfully, I've gotten better on my own w/o a transplant so far. Thankfully, I have a very qualified local GI doc that takes care of my "brain fog" & monitors me as I use few medications. Also, FYI, when I asked him if Interferon therapy could "turn against you" and do harm, he answered, "YES, it can kill you". I opted to not even try it especially since he said he'd have to pull me off of it since my platelets would quickly plummet to the stop treatment point BEFORE I'd been on it long enough to have the "50% chance of curing" that it truely carrys. The other statistic's are inflated by the drug mfgrs. Hope this info helps you and gives you pause to ponder the priorities in your life, as I have recently reflected. You are not alone...WE are here with you. GeoGirl102 >> Welcome Rita , I am so sorry you had to lose a son and I understand about the grief . I lost my brother 25yrs ago and I still cry for him . Anyway welcome to the group .> Hello/ I'm new> > > My name is Rita and I have Hep C 1b stage 3 fibrosis. Been through 2 > rounds of Peg/Riba - the first round I rebounded as soon as I > stopped meds. The second round was thru a study and I failed to > clear. I am now in a study that was 36 months with low dose Peg - I > will be done with this study next month and then another liver > biopsy to see if the low dose may have protected my liver from > further damage or maybe improved it. They almost stopped this study > but decided to continue. So I am thinking they don't have much faith > in it. If I hadn't been in this study I would have been put in the > new one with the protease inhibitor... I think that would have been > good but don't know if I could deal with the symptoms from the > higher dose of Peg and the Riba again.... I think the ribaviron made > me sicker than the Peg. (I also think it made me mean, I go off for > nothing)> > I don't know what is next. Maybe nothing - just blood work every 6 > months and watching. I don't know if I would want to do another > study at this time. I have been on meds for 4 years now. I am weary > of it. The aches, fatigue, fog brain. But I hear these are also > symptoms of Hep C. BUT for a short while between meds... I felt > better! I think I'm ready for a break from meds. > > During my first round of treatment I was also grieving the death of > my 21 year old son from a car accident. It's been 7 years since that > and I am still grieving but it is a softer grief now. Sometimes I > think it would be okay to join him. Other times I want to stay and > be with the ones still here. And my grandkids. But I am not afraid > of dying... just afraid of the pain it may cause. Well didn't mean > to bring anyone down - just telling my story. I am fine with > whatever God decides for me.> > Thanks and glad to meet ya'll.> Rita>