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Avatar universal

I have no words-please help.

I have 2/2. Dr. wants me to go to U of M for clinical study first verses Pegasys. He said I have a better chance. Will have to wait months perhaps. He will call me on Thursday.

Im in utter shock and disbelief..although was very calm & cool in the doctors office. I am a 1a.

Here are my results:
Chronic Hep C with mild activity and mild periportal fibrosis Grade 2, Stage 2.
Focal mild fatty change
Iron stain is negative.

I was advised i could have up to a 60-70 percent with a study even though Im 1a verses Pegasys and Copegus of Riba.
If I  cant get into study then we would do the Pegasys. However he wants me in the U of M. Much better chance he said.

I need all your help right now.
PLEASE
I wish I were in denial right now.Please help meif you can.
43 Responses
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87972 tn?1322661239
Wow, thanks for the good words. I got a little philosophical on us, but what the hey. I hope I got the message across.

How have you been feeling lately? I just realized I've 'known' you for about two and a half years now?! Time scoots by, huh. Take care, gal--

Bill
Helpful - 0
87972 tn?1322661239
Hi Bonnie,

Regarding urgency; I believe the appropriate response for you based on your biopsy results would be to:

1) Accept the fact that you *are* actively infected with HCV; this is no longer an issue that you can deal with by *not* dealing with it. Some form of action on your part will likely be necessary at some point in the future. Your doctor is your best resource to help you determine what and when that action should take place.
2) Use this interim time to collect your thoughts. Begin (as you have already done) by educating yourself thoroughly about HCV, it
Helpful - 0
Avatar universal
Thanks for the reply. Tell me how you are doing now??? An may I ask how old you are and how you handled this and how you are handling thisnow.

I would treat at stage 1, 2 & 3.
Im genotype 1a.
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Avatar universal
My understanding is hat if it were stage 1 you could wait and decide no rush. ButStage 2 is not somehting in my eyes that should be ignored for more than months.

I do appreciate your inout very much.
None of us knnow what our progression will be. I have had this since 23 years  the biopsy I had when I was 30 just showed inflammation in those days. Now 2/2. I think there is an urgency.

Bon
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86075 tn?1238115091
great post...
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Avatar universal
I really dont undertand how you can sit and wait on stage 2/2???
I just dont get it. Im throwing up and dont fel well for months.
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Avatar universal
"how can i wait months" i waited 9 years and was glad i did. you have years to wait. why tx now at 50% chance when you can up the odds? put it behind you, get married and wait for the dr to call in the future. you are a lot better than most of us. lol.
Helpful - 0
179856 tn?1333547362
We all know exactly how you feel you know, we've all been there...it's just such a complete shock and you have so many questions, right?

You've made the first move absolutely correctly already - you found a great place to ask questions of people who have been there, exactly where you are - who have built up quite an education during their course of treatment.

So see...you are already ahead of the game!  You're doing great already!  :)

In time you will get used to the facts of this disease - it seems impossible right now but believe me, you will.  You'll laugh at how freaked out you are right now and how you wanted to start treatment this minute!  Believe me, again, we've all been right where you are now.

You are doing the right thing - keep asking questions and LEARNING as much as you can.  The more knowledge you have the more correct decisions you will make when it comes to your treatment. Doctors mean well but they can't always understand what we are going through because they haven't.

Many of us are put on antidepressants before we start treatment.  My own doc put me on Paxill a month before I started treatment (I am geno 1A and geno1B and did 72 weeks of treatment, I am stage 3 and never had any symptoms at all...) and it was one of the best things I ever did.

It really helped to calm me down and keep me level all throughout treatment.

You might want to speak to him about this.  Interferon can cause big big problems with anxiety and depression so it's a very common thing for doctors to prescribe it anyway - it might help you to start to calm down.

Your doing fine believe it or not.  Your liver is in pretty good shape (compared to a lot of us) and you are asking good questions.

Just take it one day at a time - and realize, you have a LOT of people here to talk to who will help in any way that they can.

you're already so far ahead of the curve with THAT that you can know you'll be just fine.

Good luck!
Helpful - 0
Avatar universal
I made a post last night after I got in late,I guess I closed it out before posting........Bonnie ,Your gonna be ok.......
    You just have "I  can't see the Forest because of the Tree " syndrome......
All you see is the bad right this second....
    Back up look at the WHOLE PICTURE.......It's taken you 52 years to get to where your at now and How many years have you known that you had this?
Now your gonna treat at 52....In 8 years yur gonna be 60..10 after that your gonna be 70...with treatment you'll be easily adding another 20 anyhow....So Relax.............Bonnie's gonna be ok.........
Helpful - 0
86075 tn?1238115091
just wanted to re-iterate that I'm not a professional, and that I'm just guessing because of course I don't know for sure, but it's worth a try for yourself...if you don't have the funds, there are usually mental health hotlines in most cities and counties that could give you information on low-cost or free help along these lines...hope you feel better soon! And also the suggestion about finding a hep c support group is a good one as well....
Helpful - 0
86075 tn?1238115091
to tell you the truth, I think you sound depressed...course, I'm not a doc, but I know a little about it, since I've had struggles with this myself and I've gone to many therapists, psychiatrists, etc...have you spoken to somebody about getting some professional help? When youre depressed, it's hard to let in optomistic thoughts, on top of that there can be an obsessional quality about about your thoughts when youre depressed...course I can't analyze you or make any definitive observations, but I'd at least look into this, you could be feeling much better but we have to be pro-active about these things for ourselves, which, ironically, is the hardest thing to do when youre depressed...but I had to make myself call and see people about this when I've been in these types of circumstances...and the pay-off was very healing...hope you don't take this the wrong way, just trying to help...many of us have had these issues...best of luck to you....
Helpful - 0
Avatar universal
I wish i truly could say I felt like I would live to 70. I just dont feel that way.
Doctor didnt tell me i would have a long life. I just figured im smack in the middle the rest is downhill. I know wrong approach..but I dont know any better..and wasnt told any diffferent by him.

Im sorry for whining.not a whine a cry for help.
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Avatar universal
Really?? My chances are good?? Why wont it penetrate??
Thanks.

Tell me how you are and how you feel please.
Bonnie
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Avatar universal
You really meant what you said you always do..........I havent relaxed yet.....
I just cant......2/2 just isnt sitting right with me yet. Im still in shock.........
Im so crappy.........

I believe what you said just scared and worried. Even though Im 52 I guess my mortality banged me in the head for the first time...I know I shouldnt complain.......................being terrified is a horrible thing....

Hope you feel well Bug and have been thinking of you since I got home.

Bonnie
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86075 tn?1238115091
youre kind of in the same boad that I am, I forgot your labs though, what was your viral load? Look at it this way (and of course, some will probably disagree with me) people in the past were diagnosed with this and they just had to take the only thing available (once they got a little older/and/or progressed a little) and with a 2 you have just progressed a little, not a lot like 4...

And  all the 4's on here and elsewhere get through it too, there are 4's on here who have SVRed (sustained viral response, cured for the most part.) It's good to get this in perspective...I know people who are cirrhotic (well into 4) and are just living their lives for the most part normally...please know that getting diagnosed at a 2 IS NOT A DEATH SENTENCE, NOT BY ANY MEANS...

the way the mind works (in many people) is when you get a start like this, we'll tend to focus on all the bad things we hear and see about hepatitis, the nightmare stories you'll here, and apply it to ourselves, in other words, a lot of projecting into the future and to ourselves...

cept, we're all individuals on our own path, some of us do have worse times, but most of us have much better times with this...try to think you'll be one of the people that will have a much better time with this...and not the small percentage of people who have a worse time of it...

the best thing that works for me, (and everyone has their own coping mechanisms) is I do a Buddhist thing, and just tell myself, "be here now" now is all we have, the future is not here yet and we don't necessarily know what that will be....and the past is just a memory...just be here now...

Do a lot of educating yourself, like Fl Man says...and try not to focus on the bad, because later on when you'll see for yourself that it wasn't half as bad as you thought it would be, youre going to wish you had all those days of freaking out and wasting your energy on bad thoughts...and you can't get those days back... youre okay!
Helpful - 0
96938 tn?1189799858
I'm not going anywhere. Paris will be in and out jail and launch a new line of prisonwear before my last post.
Helpful - 0
Avatar universal
why didnt he just start me on pegasys?? Beacuse he said a trial would be better?? I understand and yet dont understand. How can I wait months??? How can any of us wait so long mentally or physically???
Your humor is wonderful but right now I feel as if i was given a death sentence.
Just plain scary.....the numbers I mean 1, 2, 3 4. I hate it.

Its sorta like being told you have cancer and nobody knows whats going to happen.

ALone & scared...
wish I was sleepless in Seattle instead.
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Avatar universal
I feel like Im on RIba already.. Forgot what SVR is??
________ viral response...

Im a numbnut...im so scared i feel like im goinf to turn inside out.
What a mess that would be.

lol
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Avatar universal
Justtell me how you feel physically these days if you would whenever you get a chance??
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96938 tn?1189799858
Speaking frankly, your doc did you a very big favor by not driving you in a specific direction at this time.  You are not ready to be on treatment, until you get stuff sorted out, get thoughtful and get a little less discombobulated.  Just sticking a syringe in and thinking you are good to go - gets you nowhere (in my case, gets you nowhere twice).  Sorry if this sounds harsh but good decsions are much better than fast decisions.
Helpful - 0
96938 tn?1189799858
SVR is sustained viral response.  This means that 6 months AFTER treatment ends a blood test (PCR) can find no virus in your blood.
Right now, I feel ok. Treatment is not always easy and it's a long haul but having your stuff together physically, emotionally, familyly, insurancely and doctorly is very important.  And, until you have your stuff together you're not ready. Lot's of T's and I's in the hcv alphabet.
Helpful - 0
96938 tn?1189799858
Hey, I got you by two stages, several years, relapsed and now doing it again. There are several things in your situation to be optimistic about. From where I sit, your're in a pretty good spot. That's not 'cheer up Bonnie b.s.' either. HCV is not a death sentence or a reason or excuse to expect the worst of anything.  It's more like having your mother-in-law staying for an extended visit.
Helpful - 0
Avatar universal
Ditto what FlGuy says. You need to be prepared physically, emotionally, and financially to treat.  You don't want to jump off into treatment until you are prepared.  You do have time to plan and prepare.
Helpful - 0
Avatar universal
But I am prepared for treatment mentallly. I want to start. Now I have to wait.
I want to get better. Our future is now thats what I believe.Why is evreyone on treatment bitching and complaining and I have to wait. THe doc thought it  was in my best interest to go for trial first. He said look if you want to start Pegasysy we will start but then we have to forget about the trial thats if they take me. Thought I would have a better shot at the U of M.
I can do alot of things but waiting is not good for me. I want to begin and get it over with he said 48 weeks. Why cant  I be in the same boat as you guys???
Im not whining Im asking.
S---!!!!
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