Re: help, not horror please

[Guest guest]

Dear Barb, I can certainly understand your views. Those posting " negative " posts

are simply saying honestly what they experienced. We all know that tx is totally

different for each of us. There are common threads of side effects, but only you

know how these drugs affect you. After 5 months of treatment, you should have a

good idea of your body and minds' reactions. You've made it so far already! And

you can see the light at the end of the tunnel. Follow your gut feelings, and

understand that if you are not experiencing some of the negative sides that

others have had, you are perhaps fortunate. I have been through 3 complete 48

week treatments starting in the early '90's, and each one was totally different

from the others. So I could not possiblty write a common list of my own side

effects. What people have not been posting is how fairly easy tx has been for

them. Many have have minimal sides, and have successfully worked full time

throughout tx. I worked during my first 2 tx's, but the 3rd reallt kicked my

butt. Go figure! Stay with your program, as you're doing superbly. A " negative "

post is not meant to scare anyone, but this is a wonderful place to vent. Seems

like we tend to vent negatively more easily than emphasising the positive. You

are an example of the positive, and perhaps some are a bit jealous? Congrats on

doing so well so far, and may you be blessed to continue treatment to the end!

>

>

> >From: bethee222000@ yahoo.com <bethee222000@ yahoo.com>

> >Subject: [Hepatitis_C_ Central] Re: Newbie

> >To: Hepatitis_C_ Central@yahoogro ups.com

> >Date: Monday, April 5, 2010, 1:37 PM

> >

> >

> >

> >I have had hep c for probably 28 years. Was diagnosed in 2001. In 2002 had

biopsy and I was stage 1 grade 1. I was 43 at the time and my hep doctor said I

didn't need to do tx and that I would live a full life and die of something else

someday. I saw my ex go thru tx for a year and he was soooo sick. It was

terrible. He is stage 4. He was fine before the tx, now after tx his health has

declined. I have chosen to live with hep c as long as I feel good. I had

bloodwork done recently and it was all normal. I don't want to do tx and

possibly not clear it and have more health problems after.

> >Sent via BlackBerry from T-Mobile

> >

> >

>

[Guest guest]

I agree I don't think it was meant as negativity,I think it was just honesty on different people's experiences. I would just ask something like could people who have had positive results tell me how your experiences were?

Have Faith and stay positive. I know it is hard, but we are all pulling for each other equally. I don't think anyone meant to be negative on purpose. I won't share my experience because it was a negative one. But I have been on the list I think for about 2 years maybe a little less and even when things were at their worst, the list was here for me, and when I have any knowledge to offer that thess "super intellegent" ladies might not, I'll add it. But I always offer my :"ear" I read every message even when I am a long term lurker. So I wanted to let you know that I am here for a sholder for you not matter what the outcome. I have a strong belief in Faith and I hold my Faith very high. If you are a Spiritual person and would like to email offlist as to not offend anyone I am at 24ohiofan@... and I will also be happy to lend an ear in that regard. Just know that you are never alone as long as you have us.

I know if might seem petty at this stage, but never give up home and stay positive. You will be in my Prayers tonight.

Love & Faith

B. King-Norman

[Hepatitis_C_ Central] Re: Newbie> >To: Hepatitis_C_ Central@yahoogro ups.com> >Date: Monday, April 5, 2010, 1:37 PM> >> >> > > >I have had hep c for probably 28 years. Was diagnosed in 2001. In 2002 had biopsy and I was stage 1 grade 1. I was 43 at the time and my hep doctor said I didn't need to do tx and that I would live a full life and die of something else someday. I saw my ex go thru tx for a year and he was soooo sick. It was terrible. He is stage 4. He was fine before the tx, now after tx his health has declined. I have chosen to live with hep c as long as I feel good. I had bloodwork done recently and it was all normal. I don't want to do tx and possibly not clear it and have more health problems after. > >Sent via BlackBerry from T-Mobile> >> >>

[Guest guest]

Barb, we all understand how you are feeling and this is a great place to vent those feelings, Im sorry that it seems that sometimes all you see are negative posts but I thik that those who are doing fine and not having any issues sometimes dont find a need for forums like ours so they're not here talking about how easy their treatment has been for them,,so it does at times seem that all you see are sad negative and scary stories,I had a tough time with treatment myself and did 54 of the 60 weeks we had scheduled and yet even tho my gastro didnt want to treat me and said I had only a 10-15% chance of responding to tx and ZERO chance of SVR I DID BOTH,,,Im glad I didnt listen to him either and went with my guts. There were times when my doc wanted to make me stop and I refused or when he wanted to cut my dose back for a week, I did it only for ONE DAY

and then gave myself my procrit shot and went back to full doses.. Did my doc like that,, NO he did not and IM NOT TELLING YOU TO DO what I did either,, but I think we ALL have to decide for ourselves what works for us.. ONLY WE know how our bodies feel. We'll all keep you in our prayers for good outcomes for your platelets and for you to be able to finish tx. You're doing GREAT,, trust in yourself and in your body hon.. hugs,jax

From: bethee222000@ yahoo.com <bethee222000@ yahoo.com>Subject: [Hepatitis_C_ Central] Re: NewbieTo: Hepatitis_C_ Central@yahoogro ups.comDate: Monday, April 5, 2010, 1:37 PM

I have had hep c for probably 28 years. Was diagnosed in 2001. In 2002 had biopsy and I was stage 1 grade 1. I was 43 at the time and my hep doctor said I didn't need to do tx and that I would live a full life and die of something else someday. I saw my ex go thru tx for a year and he was soooo sick. It was terrible. He is stage 4. He was fine before the tx, now after tx his health has declined. I have chosen to live with hep c as long as I feel good. I had bloodwork done recently and it was all normal. I don't want to do tx and possibly not clear it and have more health problems after. Sent via BlackBerry from T-Mobile

[Guest guest]

I definitly agree with him Barb. I have not had tx yet, but I have a friend who is a RN in a nursing home who is doing tx right now and she is working every week. She is doing okay. She has a little bit of moodiness day after but she is fine other than that. I have seen both sides of it. You really can't judge one persons reaction to tx by anothers. We kind of got to walk our own walk but with our friends here to comfort us. Hugs Cinder

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Subject: Re: help, not horror pleaseTo: Hepatitis_C_Central Date: Monday, April 5, 2010, 8:18 PM

Dear Barb, I can certainly understand your views. Those posting "negative" posts are simply saying honestly what they experienced. We all know that tx is totally different for each of us. There are common threads of side effects, but only you know how these drugs affect you. After 5 months of treatment, you should have a good idea of your body and minds' reactions. You've made it so far already! And you can see the light at the end of the tunnel. Follow your gut feelings, and understand that if you are not experiencing some of the negative sides that others have had, you are perhaps fortunate. I have been through 3 complete 48 week treatments starting in the early '90's, and each one was totally different from the others. So I could not possiblty write a common list of my own side effects. What people have not been posting is how fairly easy tx has been for them. Many have have minimal sides, and have successfully worked full time throughout tx. I

worked during my first 2 tx's, but the 3rd reallt kicked my butt. Go figure! Stay with your program, as you're doing superbly. A "negative" post is not meant to scare anyone, but this is a wonderful place to vent. Seems like we tend to vent negatively more easily than emphasising the positive. You are an example of the positive, and perhaps some are a bit jealous? Congrats on doing so well so far, and may you be blessed to continue treatment to the end!>

[Guest guest]

Hey Barb,

Treatment is a scary time, but the period while waiting for treatment was

the scariest for me. I hope your doctor started you on antidepressants before

or during treatment. I can't tell you much about if your platelets will rise

while they reduce your meds, but I do know that my doc told me that even if you

are on treatment for a short while and have to stop, you have at least given

your liver a short rest and recuperation. And you are undetectable, so you have

given your liver a fighting chance! I also know that I did my six month post

treatment labs in February and I was pronounced virus negative! So yes, there

are positive outcomes. Treatment was a marathon and wasn't always easy or

pleasant, but now that I am past it, I think it's kinda like having a baby. You

forget all the pain and focus on the good outcome. I hope and pray that you have

a good outcome too, Barb. Please keep us posted on your labwork. We do care

about you and will try to help you in your dragon slaying ventures!

>

>

> >From: bethee222000@ yahoo.com <bethee222000@ yahoo.com>

> >Subject: [Hepatitis_C_ Central] Re: Newbie

> >To: Hepatitis_C_ Central@yahoogro ups.com

> >Date: Monday, April 5, 2010, 1:37 PM

> >

> >

> >

> >I have had hep c for probably 28 years. Was diagnosed in 2001. In 2002 had

biopsy and I was stage 1 grade 1. I was 43 at the time and my hep doctor said I

didn't need to do tx and that I would live a full life and die of something else

someday. I saw my ex go thru tx for a year and he was soooo sick. It was

terrible. He is stage 4. He was fine before the tx, now after tx his health has

declined. I have chosen to live with hep c as long as I feel good. I had

bloodwork done recently and it was all normal. I don't want to do tx and

possibly not clear it and have more health problems after.

> >Sent via BlackBerry from T-Mobile

> >

> >

>

[Guest guest]

Hi Cinder,I too have worked while doing TX, both times fpr I think the great thing is TX really doesn't mess with your brain as far as thinking (just speaking for myself there).Going to the gym the second time around I had to stop (wasn't working out first time around but when I lost 30 lbs I decided to keep the fat off, lol) for my body wasn't very strong since I wasn't eating well. I definitely had moodiness but did go on antidepressants so that helped a lot and I suggest that to everyone. You are also correct in judging a persons reaction to TX because we are all different and yes, walk your own walk (I like that). The great thing is many of the side affects from TX, we can do something about.Love,SheilaTo: Hepatitis_C_Central Sent: Tue, April 6, 2010 10:12:51 AMSubject: Re: Re: help, not horror please

I definitly agree with him Barb. I have not had tx yet, but I have a friend who is a RN in a nursing home who is doing tx right now and she is working every week. She is doing okay. She has a little bit of moodiness day after but she is fine other than that. I have seen both sides of it. You really can't judge one persons reaction to tx by anothers. We kind of got to walk our own walk but with our friends here to comfort us. Hugs Cinder

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[Guest guest]

Hi Barbara,I am sorry there is a lot of negative, but, they are the truth (and I will say no more to that matter since many concerned people have replied) and we do reply because we care. Sometime when you are feeling down about what your body is going through, try to think of others who are hurting and maybe your illness won't be so bad at that point. You know, I have had so many medical things wrong with my body: I wet my bed until I was 12 years old (surgery stopped that..thank God), I had epilepsy, couldn't drive for many years and wasn't able to join the service because of the illness (surgery stopped that and I thank God again), I have Hep C (which medicine could not cure, been on it twice now), had shingles (recently and that was yuk), broken collar

bone, my colon got infected and burst (which has been repaired and I can now poo normally and I will thank God again for that, lol), I have rheumatoid Arthritis, I could go on and on and on but your know what, I am a pretty happy person for I know all happens for a reason and you know I look at someone worse off then myself and I really can't complain.So once again, look at someone whom is worse off then you and hopefully that will assist you in not feeling negative about what your body is going through. So you see, all I have been through may be worse then what you are feeling and it will get better..you wait and see. If at all possible, let go and let God (I try that at times and when I do, it usually gets "me" out of my head).Love,SheilaTo: Hepatitis_C_Central Sent: Mon, April 5, 2010 7:17:01 PMSubject: help, not horror please

Hi, this is Barb again. I do understand what people are saying about having a positive attitude and a 'wait and see what happens' attitude but I'm in the position now that if my platelets go down another 10,000 points, tx will stop. I've been on tx for 5 months now, not so I can 'wait and see' but to get rid of this crap once and for all. I'm tired of trying to explain to people how i got hepc, what hepc is, and that I'm not just a diseased specimen that should be wiped off the face of this earth. I've tried with this tx and have dedicated the past 5 months to it. It hasn't been easy and I've done EVERYTHING that I was supposed to do....EVERYTHING. I have bells and whistles going off (literally) so I take the riba on time twice per day. I have to take it from lab work to lab work every week to see

what's going to happen...if i get to stay on tx or not. I was just deemed undetectable about 2-3 weeks ago and now they're lowering my riba and IFN. The hepc will probably come back. Talk about depression? I even had to have 2 transfusions last Friday cuz my red count was so low. But I'm following the protocol and am trying to think positive but i'm a realist. Positive thinking will not make my platelets go up just as positive thinking will not make the dead bone in my joints grow back as healthy undamaged bone. It just doesn't work that way.I'm scared shi*less that I will not be able to continue tx and what I'm hearing from some of you is negative stuff about tx when I need to hear positive outcomes. Telling me horror stories is not helpful. It's hurtful. Every minute of every day is filled with fear and anxiety about what my next labs will be.....which are a week away. Please understand that I'm not trying to dismiss what others have said

here...some of what I've read has been very helpful. But there have been some posts that have really gotten me down...more than I already am. One thing that I need to know is if they lower your IFN and riba, will your platlets go up? That's all i need to know and I would really appreciate it if someone can tell me this. Again, I don't want to start any hard feelings here, I went into tx after 5 yrs of begging for it and now that I am doing it the thought of not being able to continue it for after only 5 months is just devastating. I couldn't do tx because i have a bone disease (I've said this before) and have had 6 surgeries in 4 years and tx was out of the question during that time. So now I get my chance at it and I get negativity from some people here. I came back to this group after a couple of years of being off of it for support and to give support if I can. But I'm getting all down about everything and maybe it would be best if i

just quit the group for now. No hard feelings but I need hope, not horror stories. YOU tell me what I should do.Thanks,Barb ZFrom: Elder <lsl42003yahoo (DOT) com>To: Hepatitis_C_ Central@yahoogro ups.comSent: Mon, April 5, 2010 5:51:22 PMSubject: Re: [Hepatitis_C_ Central] Re: Newbie

Beth I did the treatment for 48 weeks. I was undetected but it came back after I finished. I got no benefits from it. I am 1A with beginning cirrhosis. I am taking the attitude of wait and see. I do take certain meds to keep the fluid retention and ammonia down and I take milk thistle. I rest but I work full time and live life. Its my attitude that has helped me. I have accepted that If I need a transplant down the road its just another bump to go over. Good luck to you.

from CA

From: bethee222000@ yahoo.com <bethee222000@ yahoo.com>Subject: [Hepatitis_C_ Central] Re: NewbieTo: Hepatitis_C_ Central@yahoogro ups.comDate: Monday, April 5, 2010, 1:37 PM

I have had hep c for probably 28 years. Was diagnosed in 2001. In 2002 had biopsy and I was stage 1 grade 1. I was 43 at the time and my hep doctor said I didn't need to do tx and that I would live a full life and die of something else someday. I saw my ex go thru tx for a year and he was soooo sick. It was terrible. He is stage 4. He was fine before the tx, now after tx his health has declined. I have chosen to live with hep c as long as I feel good. I had bloodwork done recently and it was all normal. I don't want to do tx and possibly not clear it and have more health problems after. Sent via BlackBerry from T-Mobile

[Guest guest]

Sheila,

My goodness have you been through the mill. I wish you so many hugs............truly!

From: bethee222000@ yahoo.com <bethee222000@ yahoo.com>Subject: [Hepatitis_C_ Central] Re: NewbieTo: Hepatitis_C_ Central@yahoogro ups.comDate: Monday, April 5, 2010, 1:37 PM

I have had hep c for probably 28 years. Was diagnosed in 2001. In 2002 had biopsy and I was stage 1 grade 1. I was 43 at the time and my hep doctor said I didn't need to do tx and that I would live a full life and die of something else someday. I saw my ex go thru tx for a year and he was soooo sick. It was terrible. He is stage 4. He was fine before the tx, now after tx his health has declined. I have chosen to live with hep c as long as I feel good. I had bloodwork done recently and it was all normal. I don't want to do tx and possibly not clear it and have more health problems after. Sent via BlackBerry from T-Mobile