Re: I start triple combo therapy Thursday

[Guest guest]

Hon,

We are here for you every step of the way. I will just let you know that I am cheering for you every step of the way. I did the 3 combo therapy and here I stand 2 year post treatment and I am still free of the virus. Remember to drink lots of water. YOu are going to hear this over and over, it helps lessen the side effects. Believe me I know been through treatment 3 times last time with the protease inhibitors plus the standard treatment with pegasgy. Get some good moisture cream for your skin, as it tends to get dry. Treat yourself kindly. I am Genotype 1. So I had to do the years treatment all 3 times.

I am a old pro at this.

If you need any help I am here for you.

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

To: Hepatitis_C_Central Sent: Sunday, July 22, 2012 10:57 AMSubject: I start triple combo therapy Thursday

Well I've been avoiding writing or reading as I am so apprehensive about starting treatment, and I didn't want to scare myself. As it is I'm feeling rather hopeless, probably for a few reasons. A) I have cirrhosis, I also have another liver disease called Primary Biliary Cirrhosis (PBC), which is an autoimmune disease, and the concern all along has been that the treatment will make the PBC worse, C) I have to do a year of treatment,D) I am extremely sensitive to any kinds of stress on my body, so I may not be able to tolerate the treatment - and then I'll be considered no longer naive and so won't qualify for most studies and D) I was enrolled in a study with GS-7977 but they pulled the plug after their initial studies with Bristol Myers declastavir were so successful. I can't help but wonder if it is because they don't want to share profit with anyone else so they're making both drugs so they can play all alone in their own sandbox. I wouldn't

care if I could wait till it comes on the market, but according to my doc, it is now or never for me - so I either don't treat or go the long hard road as many of you are doing.I'm surprised at how hopeless and down I am, I had wanted to go in guns ablazing, all positive and hopeful. I wonder if it is because I don't want to have high expectations and then be disappointed. That is what happened with the study, I was ecstatic that I was chosen for it and so was my doctor as he is very concerned what the pegasys will do to my body and my PBC, so perhaps now I'm staying low so I don't have as far to fall if I have to quit or it harms me or if I don't clear.Anyway, this is so negative, and quite frankly not really like me that I hesitate to send it, but I guess you are the folks who can relate - or not, to what I'm about to undertake and if I'm to stay the course, I need to get a better attitude. No point starting with 2 strikes against me

when I'll need as much hope and positivity to begin.Any thoughts?Thanks for reading and caring, I know you are a good group of folks.Best wishes to you all,

[Guest guest]

Be STRONG and STay POSITIVE! SAy ur Prayers and drink Water and take care of urself!Tonda Mabe Sent from my Verizon Wireless BlackBerrySender: Hepatitis_C_Central Date: Sun, 22 Jul 2012 15:57:18 -0000To: <Hepatitis_C_Central >ReplyTo: Hepatitis_C_Central Subject: I start triple combo therapy Thursday Well I've been avoiding writing or reading as I am so apprehensive about starting treatment, and I didn't want to scare myself. As it is I'm feeling rather hopeless, probably for a few reasons. A) I have cirrhosis, I also have another liver disease called Primary Biliary Cirrhosis (PBC), which is an autoimmune disease, and the concern all along has been that the treatment will make the PBC worse, C) I have to do a year of treatment,D) I am extremely sensitive to any kinds of stress on my body, so I may not be able to tolerate the treatment - and then I'll be considered no longer naive and so won't qualify for most studies and D) I was enrolled in a study with GS-7977 but they pulled the plug after their initial studies with Bristol Myers declastavir were so successful. I can't help but wonder if it is because they don't want to share profit with anyone else so they're making both drugs so they can play all alone in their own sandbox. I wouldn't care if I could wait till it comes on the market, but according to my doc, it is now or never for me - so I either don't treat or go the long hard road as many of you are doing.I'm surprised at how hopeless and down I am, I had wanted to go in guns ablazing, all positive and hopeful. I wonder if it is because I don't want to have high expectations and then be disappointed. That is what happened with the study, I was ecstatic that I was chosen for it and so was my doctor as he is very concerned what the pegasys will do to my body and my PBC, so perhaps now I'm staying low so I don't have as far to fall if I have to quit or it harms me or if I don't clear.Anyway, this is so negative, and quite frankly not really like me that I hesitate to send it, but I guess you are the folks who can relate - or not, to what I'm about to undertake and if I'm to stay the course, I need to get a better attitude. No point starting with 2 strikes against me when I'll need as much hope and positivity to begin.Any thoughts?Thanks for reading and caring, I know you are a good group of folks.Best wishes to you all,

[Guest guest]

Hello,I got a call from Coleen, who oversaw my treatment last week. She said I had passed the six-month mark and was now "cured."A way I looked at it before I began the study, which was successful (six months now- cured), was to visualize how it feelsto be in the end stages of liver disease/hep c. The treatment caused me feelings of low self worth, hopelessness, skin rashes,insomnia, anger, loss of dignity and other things too. But, those are temporary prices to pay. The end game for hep c is permanent.So, I have nothing to offer but living proof that the awfulness of the treatment is worth it. Your life will be hell. But

afterwards, you will not have hep c. Liberated. The high price you pay during treatment is not only worth it, but a character builder. Do it. You will find hope if you don't letthe despair snatch it away from you.Bonne chance,Maurice To: Hepatitis_C_Central Sent: Sunday, July 22, 2012 11:57 AM Subject: I start triple combo therapy Thursday

Well I've been avoiding writing or reading as I am so apprehensive about starting treatment, and I didn't want to scare myself. As it is I'm feeling rather hopeless, probably for a few reasons. A) I have cirrhosis, I also have another liver disease called Primary Biliary Cirrhosis (PBC), which is an autoimmune disease, and the concern all along has been that the treatment will make the PBC worse, C) I have to do a year of treatment,D) I am extremely sensitive to any kinds of stress on my body, so I may not be able to tolerate the treatment - and then I'll be considered no longer naive and so won't qualify for most studies and D) I was enrolled in a study with GS-7977 but they pulled the plug after their initial studies with Bristol Myers declastavir were so successful. I can't help but wonder if it is because they don't want to share profit with anyone else so they're making both drugs so they can play all alone in their own sandbox. I

wouldn't care if I could wait till it comes on the market, but according to my doc, it is now or never for me - so I either don't treat or go the long hard road as many of you are doing.

I'm surprised at how hopeless and down I am, I had wanted to go in guns ablazing, all positive and hopeful. I wonder if it is because I don't want to have high expectations and then be disappointed. That is what happened with the study, I was ecstatic that I was chosen for it and so was my doctor as he is very concerned what the pegasys will do to my body and my PBC, so perhaps now I'm staying low so I don't have as far to fall if I have to quit or it harms me or if I don't clear.

Anyway, this is so negative, and quite frankly not really like me that I hesitate to send it, but I guess you are the folks who can relate - or not, to what I'm about to undertake and if I'm to stay the course, I need to get a better attitude. No point starting with 2 strikes against me when I'll need as much hope and positivity to begin.

Any thoughts?

Thanks for reading and caring, I know you are a good group of folks.

Best wishes to you all,

[Guest guest]

I'm in Week 12 of the therapy. I had a liver transplant in Sept. '07, very

successful, no problems, but of course still had HCV. This therapy is working

very well, by the 2nd week my viral load was zero. Yes, the side effects are

there, but not all of them - mostly the fatigue due to depleted red blood cells.

Docs put me on Procrit to help with that.

So, with that brief history, I offer my opinion. I don't know about the PBC.

That could negate any positive effect the Triple Combo would have, but it seems

that you wouldn't be offered the chance if it were not possible to achieve

success.

I'd say go for it, try to keep a positive attitude. Friends and family can help

with that, if they sympathize and have an understanding of the process. You will

need support, like with housekeeping, running errands, normal everyday stuff.

But, I have learned to function in spite of the side effects. Sometimes it's not

easy, and my Significant Other, being a type of guy who refuses to do any kind

of housework, yardwork, or pet care, is absolutely no help. I just don't

encourage visitors these days, as my house is a mess & I don't have the energy

to keep it as clean as I like.

However, I do have friends who " get it " , and help me as they can. And, their

understanding goes a long way, plus they are following my progress and cheer

when my tests come back each week with no detectable virus in my system.

So, please don't stay down. No matter your results, at least you are FIGHTING!

That in itself is a positive thing. You are taking charge, going on the

offensive, and you really are " going in with guns blazing " , even if you don't

feel all that strong. The very fact that you are entering the treatment program

is a blazing gun, in my opinion!

Vent all you want, it helps! I know my friends patiently listen to my occasional

whining about how tired or nauseous I am. Everybody needs to vent. So go ahead,

we understand.

To quote the old Devo song, " Whip it, whip it good " ! We're with ya!

>

> Well I've been avoiding writing or reading as I am so apprehensive about

starting treatment, and I didn't want to scare myself. As it is I'm feeling

rather hopeless, probably for a few reasons. A) I have cirrhosis, I also have

another liver disease called Primary Biliary Cirrhosis (PBC), which is an

autoimmune disease, and the concern all along has been that the treatment will

make the PBC worse, C) I have to do a year of treatment,D) I am extremely

sensitive to any kinds of stress on my body, so I may not be able to tolerate

the treatment - and then I'll be considered no longer naive and so won't qualify

for most studies and D) I was enrolled in a study with GS-7977 but they pulled

the plug after their initial studies with Bristol Myers declastavir were so

successful. I can't help but wonder if it is because they don't want to share

profit with anyone else so they're making both drugs so they can play all alone

in their own sandbox. I wouldn't care if I could wait till it comes on the

market, but according to my doc, it is now or never for me - so I either don't

treat or go the long hard road as many of you are doing.

>

> I'm surprised at how hopeless and down I am, I had wanted to go in guns

ablazing, all positive and hopeful. I wonder if it is because I don't want to

have high expectations and then be disappointed. That is what happened with the

study, I was ecstatic that I was chosen for it and so was my doctor as he is

very concerned what the pegasys will do to my body and my PBC, so perhaps now

I'm staying low so I don't have as far to fall if I have to quit or it harms me

or if I don't clear.

>

> Anyway, this is so negative, and quite frankly not really like me that I

hesitate to send it, but I guess you are the folks who can relate - or not, to

what I'm about to undertake and if I'm to stay the course, I need to get a

better attitude. No point starting with 2 strikes against me when I'll need as

much hope and positivity to begin.

>

> Any thoughts?

> Thanks for reading and caring, I know you are a good group of folks.

> Best wishes to you all,

>

>

[Guest guest]

Hi Ginger,I am also on my third treatment and this third time included incivek which the first two times didn't. Yet I am doing the best, feeling wise, this time. I honestly think it is the hydration that is upmost important to me this time around that I didn't have the knowledge of last 2 times. Also, I think the incivek was a great invention and that is the reason many are making it. The incivek is a very hard med but it is only for 12 weeks and not 48 weeks like I have with the pegasys and Ribavirin. I have problems with my hemoglobin (which I am use to) and other then that being on the peg and rib and keeping highly hydrated, I am eating good and that was hard the first two times around and I really feel pretty normal as long as I do the

moisture on my skin. Please feel free to ask anything, no question is ever too stupid .Love,SheilaI may be doing well this time around for I am not working (I am volunteering right now and not full time) but I think incivek would have been extremely harder if I was working also.I hope I don't offend anyone here so this message is to only those concerned, but God is here with us and knew we were going to go through this long ago. If we as an individual don't make it and our time has come, in my book, that is not such a bad thing. We all want to live but we will all die one day and when our time comes, it comes, not matter what medicine or illness we have. Cherish each day as it comes for no one has any idea what tomorrow will

bring.Love,Sheila

[Guest guest]

I think it's a hard road to go down; its not fun and not hopeless! I am 61 had hep c for a long time maybe 10 years, fine out in 98 and been on treatment 2 times! I have cirrosis also . I go to to get test that lets me know how I am doing . I can its been a long road but its not over till its over!I know the place now looks hopeless! I wont give up I wont stoping trying! I think all a person can do is Hope, Pray, Live,and know your not along! To: Hepatitis_C_Central Sent: Sunday, July 22, 2012 2:53 PM Subject: Re: I start triple combo therapy Thursday

I'm in Week 12 of the therapy. I had a liver transplant in Sept. '07, very successful, no problems, but of course still had HCV. This therapy is working very well, by the 2nd week my viral load was zero. Yes, the side effects are there, but not all of them - mostly the fatigue due to depleted red blood cells. Docs put me on Procrit to help with that.

So, with that brief history, I offer my opinion. I don't know about the PBC. That could negate any positive effect the Triple Combo would have, but it seems that you wouldn't be offered the chance if it were not possible to achieve success.

I'd say go for it, try to keep a positive attitude. Friends and family can help with that, if they sympathize and have an understanding of the process. You will need support, like with housekeeping, running errands, normal everyday stuff. But, I have learned to function in spite of the side effects. Sometimes it's not easy, and my Significant Other, being a type of guy who refuses to do any kind of housework, yardwork, or pet care, is absolutely no help. I just don't encourage visitors these days, as my house is a mess & I don't have the energy to keep it as clean as I like.

However, I do have friends who " get it " , and help me as they can. And, their understanding goes a long way, plus they are following my progress and cheer when my tests come back each week with no detectable virus in my system.

So, please don't stay down. No matter your results, at least you are FIGHTING! That in itself is a positive thing. You are taking charge, going on the offensive, and you really are " going in with guns blazing " , even if you don't feel all that strong. The very fact that you are entering the treatment program is a blazing gun, in my opinion!

Vent all you want, it helps! I know my friends patiently listen to my occasional whining about how tired or nauseous I am. Everybody needs to vent. So go ahead, we understand.

To quote the old Devo song, " Whip it, whip it good " ! We're with ya!

>

> Well I've been avoiding writing or reading as I am so apprehensive about starting treatment, and I didn't want to scare myself. As it is I'm feeling rather hopeless, probably for a few reasons. A) I have cirrhosis, I also have another liver disease called Primary Biliary Cirrhosis (PBC), which is an autoimmune disease, and the concern all along has been that the treatment will make the PBC worse, C) I have to do a year of treatment,D) I am extremely sensitive to any kinds of stress on my body, so I may not be able to tolerate the treatment - and then I'll be considered no longer naive and so won't qualify for most studies and D) I was enrolled in a study with GS-7977 but they pulled the plug after their initial studies with Bristol Myers declastavir were so successful. I can't help but wonder if it is because they don't want to share profit with anyone else so they're making both drugs so they can play all alone in

their own sandbox. I wouldn't care if I could wait till it comes on the market, but according to my doc, it is now or never for me - so I either don't treat or go the long hard road as many of you are doing.

>

> I'm surprised at how hopeless and down I am, I had wanted to go in guns ablazing, all positive and hopeful. I wonder if it is because I don't want to have high expectations and then be disappointed. That is what happened with the study, I was ecstatic that I was chosen for it and so was my doctor as he is very concerned what the pegasys will do to my body and my PBC, so perhaps now I'm staying low so I don't have as far to fall if I have to quit or it harms me or if I don't clear.

>

> Anyway, this is so negative, and quite frankly not really like me that I hesitate to send it, but I guess you are the folks who can relate - or not, to what I'm about to undertake and if I'm to stay the course, I need to get a better attitude. No point starting with 2 strikes against me when I'll need as much hope and positivity to begin.

>

> Any thoughts?

> Thanks for reading and caring, I know you are a good group of folks.

> Best wishes to you all,

>

>

[Guest guest]

Very encouraging email, thanks for sharing this.

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

To: Hepatitis_C_Central Sent: Sunday, July 22, 2012 2:53 PMSubject: Re: I start triple combo therapy Thursday

I'm in Week 12 of the therapy. I had a liver transplant in Sept. '07, very successful, no problems, but of course still had HCV. This therapy is working very well, by the 2nd week my viral load was zero. Yes, the side effects are there, but not all of them - mostly the fatigue due to depleted red blood cells. Docs put me on Procrit to help with that.So, with that brief history, I offer my opinion. I don't know about the PBC. That could negate any positive effect the Triple Combo would have, but it seems that you wouldn't be offered the chance if it were not possible to achieve success.I'd say go for it, try to keep a positive attitude. Friends and family can help with that, if they sympathize and have an understanding of the process. You will need support, like with housekeeping, running errands, normal everyday stuff. But, I have learned to function in spite of the side effects. Sometimes it's not easy, and my Significant Other, being a

type of guy who refuses to do any kind of housework, yardwork, or pet care, is absolutely no help. I just don't encourage visitors these days, as my house is a mess & I don't have the energy to keep it as clean as I like.However, I do have friends who "get it", and help me as they can. And, their understanding goes a long way, plus they are following my progress and cheer when my tests come back each week with no detectable virus in my system.So, please don't stay down. No matter your results, at least you are FIGHTING! That in itself is a positive thing. You are taking charge, going on the offensive, and you really are "going in with guns blazing", even if you don't feel all that strong. The very fact that you are entering the treatment program is a blazing gun, in my opinion!Vent all you want, it helps! I know my friends patiently listen to my occasional whining about how tired or nauseous I am. Everybody needs to vent. So go ahead, we

understand.To quote the old Devo song, "Whip it, whip it good"! We're with ya!>> Well I've been avoiding writing or reading as I am so apprehensive about starting treatment, and I didn't want to scare myself. As it is I'm feeling rather hopeless, probably for a few reasons. A) I have cirrhosis, I also have another liver disease called Primary Biliary Cirrhosis (PBC), which is an autoimmune disease, and the concern all along has been that the treatment will make the PBC worse, C) I have to do a year of treatment,D) I am extremely sensitive to any kinds of stress on my body, so I may not be able to tolerate the treatment - and then I'll be considered no longer naive and so won't

qualify for most studies and D) I was enrolled in a study with GS-7977 but they pulled the plug after their initial studies with Bristol Myers declastavir were so successful. I can't help but wonder if it is because they don't want to share profit with anyone else so they're making both drugs so they can play all alone in their own sandbox. I wouldn't care if I could wait till it comes on the market, but according to my doc, it is now or never for me - so I either don't treat or go the long hard road as many of you are doing.> > I'm surprised at how hopeless and down I am, I had wanted to go in guns ablazing, all positive and hopeful. I wonder if it is because I don't want to have high expectations and then be disappointed. That is what happened with the study, I was ecstatic that I was chosen for it and so was my doctor as he is very concerned what the pegasys will do to my body and my PBC, so perhaps now I'm staying low so I don't have

as far to fall if I have to quit or it harms me or if I don't clear.> > Anyway, this is so negative, and quite frankly not really like me that I hesitate to send it, but I guess you are the folks who can relate - or not, to what I'm about to undertake and if I'm to stay the course, I need to get a better attitude. No point starting with 2 strikes against me when I'll need as much hope and positivity to begin.> > Any thoughts?> Thanks for reading and caring, I know you are a good group of folks.> Best wishes to you all,> >

[Guest guest]

Thanks to you all for your encouragement. I figure I'm doing this because somewhere deep down I do have hope, so my job now is to connect with that place and let the dark place be there, but in the background rather than foreground. I'm amazed at the courage of those of you who have gone through this more than once and even 3 times. So here's hoping once is enough for me. I'll check in after Thursday and tell you how it goes with the first shot and pills.

Much appreciation to you all

“What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others.” - Pericles

[Guest guest]

Hey You are I are in the same boat with the procrit. I didn't have to get a shot today for my hemoglobin was over a 10 but I still feel very tired everyday. I also have many families and friends that understand and help me all they can. I just believe it is a "time" issue and I have 5 more months of treatment left and will make it. If for some reason I don't rid the disease (it is coming up undetectable right now)...I'm ok with that for I am the reason I have this disease and when we take one day at a time, we won't have to worry about 5 years from now. To: Hepatitis_C_Central Sent: Sunday, July 22, 2012 3:53 PM Subject: Re: I start triple combo therapy Thursday

I'm in Week 12 of the therapy. I had a liver transplant in Sept. '07, very successful, no problems, but of course still had HCV. This therapy is working very well, by the 2nd week my viral load was zero. Yes, the side effects are there, but not all of them - mostly the fatigue due to depleted red blood cells. Docs put me on Procrit to help with that.

So, with that brief history, I offer my opinion. I don't know about the PBC. That could negate any positive effect the Triple Combo would have, but it seems that you wouldn't be offered the chance if it were not possible to achieve success.

I'd say go for it, try to keep a positive attitude. Friends and family can help with that, if they sympathize and have an understanding of the process. You will need support, like with housekeeping, running errands, normal everyday stuff. But, I have learned to function in spite of the side effects. Sometimes it's not easy, and my Significant Other, being a type of guy who refuses to do any kind of housework, yardwork, or pet care, is absolutely no help. I just don't encourage visitors these days, as my house is a mess & I don't have the energy to keep it as clean as I like.

However, I do have friends who "get it", and help me as they can. And, their understanding goes a long way, plus they are following my progress and cheer when my tests come back each week with no detectable virus in my system.

So, please don't stay down. No matter your results, at least you are FIGHTING! That in itself is a positive thing. You are taking charge, going on the offensive, and you really are "going in with guns blazing", even if you don't feel all that strong. The very fact that you are entering the treatment program is a blazing gun, in my opinion!

Vent all you want, it helps! I know my friends patiently listen to my occasional whining about how tired or nauseous I am. Everybody needs to vent. So go ahead, we understand.

To quote the old Devo song, "Whip it, whip it good"! We're with ya!

>

> Well I've been avoiding writing or reading as I am so apprehensive about starting treatment, and I didn't want to scare myself. As it is I'm feeling rather hopeless, probably for a few reasons. A) I have cirrhosis, I also have another liver disease called Primary Biliary Cirrhosis (PBC), which is an autoimmune disease, and the concern all along has been that the treatment will make the PBC worse, C) I have to do a year of treatment,D) I am extremely sensitive to any kinds of stress on my body, so I may not be able to tolerate the treatment - and then I'll be considered no longer naive and so won't qualify for most studies and D) I was enrolled in a study with GS-7977 but they pulled the plug after their initial studies with Bristol Myers declastavir were so successful. I can't help but wonder if it is because they don't want to share profit with anyone else so they're making both drugs so they can play all alone in their own sandbox. I wouldn't

care if I could wait till it comes on the market, but according to my doc, it is now or never for me - so I either don't treat or go the long hard road as many of you are doing.

>

> I'm surprised at how hopeless and down I am, I had wanted to go in guns ablazing, all positive and hopeful. I wonder if it is because I don't want to have high expectations and then be disappointed. That is what happened with the study, I was ecstatic that I was chosen for it and so was my doctor as he is very concerned what the pegasys will do to my body and my PBC, so perhaps now I'm staying low so I don't have as far to fall if I have to quit or it harms me or if I don't clear.

>

> Anyway, this is so negative, and quite frankly not really like me that I hesitate to send it, but I guess you are the folks who can relate - or not, to what I'm about to undertake and if I'm to stay the course, I need to get a better attitude. No point starting with 2 strikes against me when I'll need as much hope and positivity to begin.

>

> Any thoughts?

> Thanks for reading and caring, I know you are a good group of folks.

> Best wishes to you all,

>

>

[Guest guest]

Good Luck, .  We are all behind you!!  Keep us posted.  Tricia

 

Thanks to you all for your encouragement. I figure I'm doing this because somewhere deep down I do have hope, so my job now is to connect with that place and let the dark place be there, but in the background rather than foreground. I'm amazed at the courage of those of you who have gone through this more than once and even 3 times. So here's hoping once is enough for me. I'll check in after Thursday and tell you how it goes with the first shot and pills.

Much appreciation to you all

“What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others.” - Pericles

[Guest guest]

I here for you , you have a bunch of cheerleaders here for you. You can do it!!

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

To: Hepatitis_C_Central Sent: Tuesday, July 24, 2012 8:00 PMSubject: Re: I start triple combo therapy Thursday

Thanks to you all for your encouragement. I figure I'm doing this because somewhere deep down I do have hope, so my job now is to connect with that place and let the dark place be there, but in the background rather than foreground. I'm amazed at the courage of those of you who have gone through this more than once and even 3 times. So here's hoping once is enough for me. I'll check in after Thursday and tell you how it goes with the first shot and pills.

Much appreciation to you all

“What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others.†- Pericles