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Avatar universal

Starting Treatment-what to expect

Ok folks, just what you need, another newbie! Diagnosed 1 year ago-HCV-1a. I'm 54 yrs. old male. Liver & labs are normal. Liver biopsy-stage 1. Doc says no rush. no insurance. I've contacted Roche, & they will supply me with Pegasys + Copegus- free!
I'm a working musican who's going back to school this fall (music doesn't pay well).
I've chosen to start tx 10/1/06-want to enjoy my summer! Been educating myself about Hep C, and now I'm ready-I think. My question is- will I be able to play my gigs?
Will I be able to attend school and study? Relax, I have no use for fear. Fear bores me.
Remember, I'm a musican- never had stage fright! Without music I'm nothing.

Also, ladies-I've had to walk away from a wonderful, wonderful woman. Could'nt live
with myself if I gave her this poison. Did'nt tell her-she doesn't understand, she's cryin. God, I feel like a real ass,but I don't know if I could do a relationship & treatment
@ the same time. Do I keep walkin or man up & tell her the truth?

By the way 52tele, I also play a 1952 Fender Telecaster!

                                                    Blood on my strings-Slide James
26 Responses
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Avatar universal
Thats right, im in Au-stoned.  sober though, and loving it.  lol.

We have a huge music scene here, Live Music Capital of the World.  Just turn on your PBS station and you will see Austin City Limits.  There are anywhere from 50-100 live music acts on any given night here, double that on the weekends.  Great huge festivals, etc.

What do you expect when you have a conservative state the size of Texas, the liberals have to party somewhere... So we took over the prettiest part of Texas!!!   :)

We have the best College Football/Baseball teams in the world.  Great food.  Clean natural swimming holes, one where you can even go bare bottom!  Huge Festivals.  Cool Movie scene.. Tons of cliff side views.  etc.. etc..  oh yea, and with that # of bands playing, yea, a few really suck.

Its a blast here, Im never leaving.  The movies Slacker and Dazed and Confused were filmed here for a reason.  ;)
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Avatar universal
"I've heard Austin is a cool town, too. Is he right? Is that where you live? I love music, just don't have a lick of talent myself."

Neither do a good number of the musicians in Austin:)
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Avatar universal
Also be plesantly surprised if it is a 3.

Why will your doctor not do a biopsy on a 2?  2 is only slightly better % than 3 if youre 3 with a low stage liver.

I am holding off tx for these reasons.

1. My Bioppsy shows I have time, I am stage 1, grade 1.
2. I need to get in top physical shape, plenty of excersize, quit smoking, change diet.
3. I need to get in better state of mind (get over depression) Im just not mentaly ready yet.
4. Chance for better drugs coming seems likely in the next few years, Vertex and Schiring both have promising things coming to market soon.

My Doctor suggest I break it into 6 month intervals of decision so he can monitor my liver.  Basically in Jan I get another alt/ast test, just to see if it is off the map or not.  Then in another 6 months I get a Fibrosure.

Fibrosure is interesting.  Basically they took a lot of blood when they figured out my genotype then I got my biopsy.  They saved some kind of info from that and then they take another blood test during Fibrosure, plug it into a math formula that results in about 90%+ accuracy as to liver health.  sort of like a cheat sheet to avoid another biopsy.

However since I am 3a there is a good chance that in Jan I will throw in the towel on waiting and just get the hell on with it and treat.  Shares of Vertex stock be damned.. lol.  Because I keep thinking, if it was this time next year and I did that, I would be done with it by now.
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Avatar universal
Not treating yet.  Still waiting on the genotype-yeah, you're right, assume 1a, and be pleasantly surprised if its a 2!  The doc will do a biopsy on anything but a 2.  I will probably hold off if it's a 1a because I am going back to school full time, hopefully will get a Master's as well as finish my Bachelor's.  No brain fog for that.  I agree that you may want to wait until you are over your breakup to treat.  Depression is another of the big nasties that go along with tx.  Unless the virus starts replicating rapidly, should have time to decide.  This happened to a good friend who is now in remission.  I knew her through the whole nasty journey. Thankfully, it had a happy ending.  She completed the second attempt and has been in remission with no detectable virus for about 4 years now.
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Avatar universal
Annein, I forgot what I read in your above posts.  Honey to make sure your not disapointed and on edge, just accept that you have 1a now.  That's what I did.
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Avatar universal
I probably will treat a genotype 2 or 3.  Only 24 weeks, 1 semester. I am pretty sure I am a grade 1. My enzymes are all normal save for GGT which with a history of alcohol abuse, they expect that one to be high.  Slide, the reason I would hold off on a 48 week run for genotype 1 is that brain fog (confusion?) is a side affect, along with depression and fatigue.  I am still not sure where I stand with how many courses I need and am early in dealing with the doctor, so I could change my mind.  I'm so glad so decided to see your lady this weekend.  My thoughts and prayers are with you.  ohgreat, I've heard Austin is a cool town, too.  Is he right?  Is that where you live?  I love music, just don't have a lick of talent myself.
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Avatar universal
Well, Idid It. I called "HER". Very happy to hear from me- started cryin again. We're takin off early in the morning- gotta catch the tide. Damn, better clean this ol' tub up!
Pump the bildge, swab the deck, etc. B-boy- livin on a ol' wood boat ain't what it's cracked up to be. But this isn't about my boat, it's about tellin this gal I have HCV.
Big tough James is slowly feeling fear. Ehhh, ta hell with it, I'll just "Head er' into the wind" and see what she's got! I know this cozy little cove where I'll drop the hook, dump the crab pots for a soak and choose my moment. The setting &timing is everything- right ladies?
Ohgreat- thanks so much for your advise. Guess I'm not as educated on HCV as I thought. Got a good feelin that your Texas town is Austin! Heard great things bout the music down there! Always wanted to jam with those boys.
Anne-you're not treating soon because of school? Hmmmm, would like to hear more from you. I'm just goin for my bachlors- 2 years, but havin a hard time deciding what to do & when.
I'll be outa touch for 3 days, but you all can be sure that James will slide on back in here with the "results"
My deepest gratitude to all my new friends-SlideJames
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Avatar universal
Treatment affects everybody differently but my guess is you'll probably have no trouble attending school and studying.  Now, the late night gigs are gonna be a different story.  Personally, I have been very fatigued during treatment and the thought of staying out on Beale until 3-4 AM really is NOT appealing at all.  Maybe you will be different bc you seem to have a lot of passion for your music.  Also, if you can sleep in during the mornings after your gigs, that will help.

About your lady friend...  I really think you should tell her.  You are not giving her enough credit and you will wish you had her there with you when you start treatment.  You are gonna need all the support you can find.  Heck, the worst she can do is walk away.  You're already pushing her away so that shouldn't be a big deal.  Check your ego at the door and be honest with this woman.  I bet you will be surprised by her reaction.

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Avatar universal
I forgot to add that I broke up with my boyfriend when I found out I had HCV.  I didn't tell him why.  I just pushed him away.  He wouldn't go.  We are married now and I thank God for him every single day.
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132578 tn?1189755837
Slidejames, my brotha. Sorry to here about this little freaking bug wreaking havoc on your life too.I imagine it seems like a very dark passage to you at this point , but as time goes on and you take ownership of your treatment things tend to start illuminating nicely. I unfortunately am going to be late for a meeting if I dont get out of here in the next couple of minutes , but I'm going to hunt you down later today if your around. Take care.

All of my friends , yes I'm still here , not going anywhere , just trying to keep my mouth shut until somebody asks me something. I have an awkward question to ask of all of you that we have had many discussions about before. How much first hand information and personal experience do you pass on to a new patient? How much restraint do you use in telling them your treatment experience , good or bad , knowing that there experience may or may not resemble yours ?

Got to run , Talk to you guys later.
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Avatar universal
It was the GIRLS who told me to dump him!  That's what I meant that most of the best feedback was from the men.  The one that sticks with me is to give him time to digest it and educate the hell out of him, and if he was interested in more than just sex, he might turn around.  You're right about needing a good support system to get through this.  If I hadn't met him, I probably wouldn't be dealing with this.  Karma, I suppose.  Everything happens for a reason.
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Avatar universal
I have have been married for 28 years, started with very high vl (20 mil). Have had hepc for about 30 yrs. My wife has nursed my wounds. Changed bandages. She had an allergic reaction to surgery stitching and I cleaned the area daily. She has used my razors on a daily basis, had two children, and I have mended their cuts and scraps. None have hepc but me.

As for tx, be prepared for anything. I went for 26 weeks working full time, then bottomed out. Very sick for 10 weeks, almost unable to move. Lost 20 lbs. Horrible headaches. Very dizzy almost passed out driving. 1 trip to the ER. Now, fine again. Feel like a million bucks. The cure was a simple combination of anti anxiety drugs.
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Avatar universal
Sorry to hear you have HCV but I would think twice about walking away from your lady.  I will be married 39 years in 2 weeks and my wife is neg.  This is a blood to blood born virus and the chance of giving it to your partner is almost zero.  I would tell her about your HCV and let her decide if she want's to walk away.  As it stands, she thinks it probably something she did to cause the break up.  Be honest with her, you might be surprised.

Good Luck

Beagle
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85135 tn?1227289772
I remember you. Most of the guys were telling you to <b>Dump him</b>. I'm so glad he did a 180 for you. It really helps a lot to have someone who loves you going into tx.
Best wishes to you and let us know about the results from your next dr visit.
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Avatar universal
Awwww,you ladies. It would be a lifeless, boring,egotistical, testostorone driven world
without you! I am humbled by your response. Thank you for the gentle boot in the ass.
Saved1-careful, don't let the ladies see your sensetive side-gotta keep up that male image and all! Beamish boy- it's comforting to know that I have a Bro. with a sick sense
of humor! Ladies-It's a guy thing. (keep your fender out of her blender?) Oh my god!

As I mentioned, I'm hep c-1a,with no insurance, labs- normal, stage 1. Doc says I have
a 40% chance to clear. Says there's no rush. I feel I'm making this choice to tx because
Roche will give me free drugs-30 Grand worth. Hard to turn down- you dig?
Yes Chev, I'm alone with little savings. Not lookin for sympathy, just don't know what to do.
Reguarding the beautiful woman I walked away from- Only known her for a couple months. Came to my gig last night, sat down right in front, & smiled at me. Wha? I don't get it. Trust me when I say she could have any guy she wants. Why me? A musican, broke most of the time, a flakey dreamer? It's just a mystery to me.
I live on a small 25' sailboat (with 17 guitars) here in Wa. state. Gonna work up the courage to call her & invite her to go sailing in the San Juan Islands for the week end-&
tell her I have hep c and see what she does. Hope she dose't jump overboard! No sex yet- poison makes me feel so... well---Dirty. Perhaps It's time to wipe off that blood from my strings. Thank you all so much- I'll be in touch-SlideJames
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Avatar universal
I don't know if you remember my original post about my now boyfriend freaking out and saying he couldn't date me.  The thing that got him the most was the part about not sharing toothbrushes, etc.  I knew he had a turnaround when he told me first thing in the morning I could use his toothbrush.  That was just priceless to me! Of course I didn't and I never would. I had one in my purse just in case. I would rather he give up the condom before I would use his toothbrush or razor.  I keep spares of both of those things at my house.  All in good time I guess (the condom part).  I went on the Pill to stop my monthly, try to limit any bleeding of any kind.  I just had to respond to that, it brought back memories of what got me on this forum.  Some of the responses about that toothbrush thing had me in tears they were so funny!
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Avatar universal
Nice posts-encouraging tales of relationships -Goodluck with the dinner cruise,james-living on a sailboat is a lifetime dream of mine-i own a 17 ft. thistle sailboat,great for lake larks & overnites...But i want a serious bluewater rig-the only way to see the World and after i finish trx-36 down,12 more weeks!!!!!!!- i am going shopping for some slightly used,lightly abused singlehandler..Life is as interesting as we Can make it..and i am chompin at the bit to jump back in with both feet.....
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Avatar universal
OF COURSE I DO ANNEIN!

ohmigosh... " I could use his toothbrush."  That gave me a lump in my throat.  That is soooo sweet.  Little lovely moments like that are better than sex imo.  (I am still pretty emotional over my breakup, lol)

Chevygal said it best...

"In my humble Opinion, Love is not as much emotion as it is devotion and action."

indeed and well said.  plus i am so emotional, if love was just emotion I would be a naked cupid baby sittin here typin.  

I actually have been pretty depressed lately over my break up and it is 1 of the 4 reasons I am delaying my tx.  Strange thing is, I know and accepted that she was not right for me, but I must be depressed because I start tearing up at random.  But I do have so much hope and even a date with a lovely young lady who is much more sophisticated.  God didn't put me on the planet to hide in shame, that's for certain.

Annein are you treating yet?
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Avatar universal
First off James, you need to realize that you have a disease that needs plasma to live.  without plasma, it doesnt live very long in open air.  blood plasma can easily survive in needles, it can also easily survive in the mucus in your nose therefore stay on shared coke straws, and the nose sokes that blood right back into your bloodstream.

This next part is a little graphic...

It is incredibly tough to catch Hep C through sex.  I know this first hand.  I just left a relationship I was in for 10 months.  We had unprotected sex, six ways to China.  Meaning, without involving animals or other humans, if there was a way to do it, we did it... and very often.

We even did it multiple times when she was on her period.  Now I don't have herpes or anything, but I have had an ocasional ingrowner hair here in there as well.

I was scared to death that I gave her Hep C.  I made her get tested and sure enough, she was clean.

Now my NEXT relations with any beautiful women in this lovely texas town, I will use a condom if we engage in sexual activity.  This is mainly for my own protection in what I have learned since I realized I was harboring this.  Hep B is much easier to get through sex.  I am not done w/my Hep B Vac's and I just dont want that one ontop of HCV, nor do I want HIV.

I have decided to save unprotected vaginal sex for when I get married.  I just dont want to get anything and have good piece of mind.  

Oh, and I broke up with my last girlfriend because she had sex with someone else.  From what I have read, the small % of transfer greatly increases when you are out of a monogomous relationship and having unprotected sex.

If you are having protected sex, I would put the transfer rate at around 0.0000001 after what my ex and I where doing in the sack.

Sorry if that is so graphic, but I would be more worried about things like Nail Clippers, Nail Filers, Toothbrushes, Razor's/Shavers, body wash rags/scrubbers, way above vaginal intercourse.  oh and needles/lances (some people just cant leave there pimples alone and like to poke them, and I knew gals that would do it with anything sharp like safety pins laying around)  

Always have a him/hers set of all that and enjoy the relationship, even if it just turns into a friendship for god's sake.

I'm only 34 but the town I live in's culture was practically built by beautiful 50 something hippy musicians...I'll be praying for you.  Dont turn down other people out of fear.  Your not on the Hep C cross.  Just be honest. (and wear a jimmy hat)

:)




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Avatar universal
Said: Could'nt live
with myself if I gave her this poison

Oh SJ, the chance that you ever COULD give this disease to her is so slim....many of us have had very long term relationships and had NO problems whatsoever.

Instead of losing her is there any way you can tell her the truth and then just make sure to practice safeR sex practices?  The chance is just so low - and honestly in my opinion if you tell her the truth it will make it easier on her.  It must be so hard not understanding and wondering what she did wrong.

During this time having support and love will help you so much. Let it be HER decision please!  I would do ANYTHING to have a great person in my life right now.

Welcome to the club.  You've come to the right place.

There is no way to know if you WILL be able to play out or not. Everyone's body is way different with this stuff but some have no real effects from it at all.  You won't know until you start (and even though the first few weeks are bound to be difficult...it DOES get better. I've been working the entire time and while it's not always ideal you will find that you CAN do things on treatment that you enjoy (not that I enjoy work mind you LOL)

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Avatar universal
welcome, finding this format is a blessing. it is a blessing to have company through tx. and answers to ques.

i hope you don't drop her JUST because of hep c. i had it 37 years had 2 boys and have been married for 32 years? no problem.
as for work...
many days i had fatigue so bad i could not get off the couch. the headaches lasted 24 hour a day all the time and i had a BRAIN FOG that so could not remember if i wiped and did not want to see anyone.  all this would make it hard but not impossible to work. NOT ALL have these sds so good luck, some cruise through this.
one more thing. it was mentioned that at stage 1 you have years to make your decision. many new treatments are in the pipeline that will make tx.(if approved) much easier, much shorter and almost a certain cure not 45-50%.
http://www.hcvdrugs.com/   try this site.
also, as stage 1 you only have a 45% chance of SVR so may waste 48 weeks of your life.also if you start in nov. you will be on tx all next summer and maybe longer.
some like me at stage 3.3, HAVE  to tx. but not all. many will die of old age and not know they have this.
all the new drugs may not make it but you can wait for 2 or 3 years to find out. no kidding. this tx can be a female dog so get informed and make your decision educated.
also as mentioned, 2 years may give you more time to get your a
pidgens in order. i am glad you have no fear as some heppers are overwhelmed with this unjustifyable fear. not me thank GOD.

http://www.hepnet.com/hkn/c14.html   more info.  bobby
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Avatar universal
blood onthe strings maybe problematic until you reach undetected status-so keep your fender out of her blender!..nothing helps w/ trx as much as a caring friend and a good attitude..if you wish to consider peg-intron "commitment for Care' also will provide free meds-they are v good folks ...procit,if&when you need it,is also available thru a program for the uninsured musicians-GOODLUCK
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96938 tn?1189799858
Going to school, being a musician, taking a place on stage, educating yourself on a complicated subject, contemplating tx  - all those things require the same skills, persistence and dedication to carry on a meaningful personal relationship.
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Avatar universal
were you serious when you stated spacedick4 and you were one and the same? I find it hard to believe.


I state my tx experience with basics; vl, damage stage, geno, length of tx, etc. It is how I feel comfortable.
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