got biopsie results

[pitter]

hi everyone.
i don't have the genotype # yet...but my dr. told me that, the damage was "quite benign," then he said there was "very little damage to my liver" so i pressed for more explanation, and he said the damage was a 0-1 level...he didn't explain much more to me than that..and suggested me coming in to discuss treatment...well, from what i have read here...i don't want to do treatment.and may not need to at this stage.
if i HAD to treat it- i guess i would.
Can anyone help me out here with some wisdom on this?
i am 52...i already have illness and pain with rheumetoid arthritis,(mild)so i don't need more from tx for sure.
(FYI, i think i may have gotten "IT" around 10 or so yrs. ago
either thru dental work at a dirty dental office that i stopped going to of course, or, i was a hairdresser and i did cut someones hair who had it and he was very sick,i cut my finger while i was cutting his hair, ??? just FYI..)
well anyway, i would appreciate anyones thoughts and ideas of what i should do now...
i asked for all of my test results to be sent to me..
thank you, and i hope everyone finds some peace ful moments!
pitter

[missy60051]

Great to hear o damage to your liver.  
I agree not to treat just yet.  Do discuss with your Dr. of your concerns.  With you already having pain with arthritis I would really hate to see you be one of the the ones like myself and suffer the painful sx.
Some get lucky, but still.  I believe better treatments with less time and a lesser amount of sx is on it's way.  It's your decision.
Good luck what ever you decide.
Missy

[Forseegood]

thanks for the vote of confidence, I know my decision isn't popular here (though on a few other boards it's far more the case, for people in my boat) and I know some people here might think I'm swaying people one way or the other, through example...and maybe it's caused some resentment....I think everyone should look at their own case and make their decision based on their own stats...

but I just want to say that I only try to suss out what's best for myself...if I would have had worse labs this time around, I would of treated right now...anyway, I'm going to go in October-November, (which isn't that far off, time is whizzin by at my age) if I can't get into the trial that I want, I'm going to go either way, with SOC if that's the case, though I might try to see when I clear on it, a valid decision according to you and Goofman,, etc etc....I've given my doc the deadline...HR agrees with my doc and thinks I should wait for the Vertex too, but I can't get a good beat if they are going to be letting in treatment naive this fall.....they said they should know pretty soon......if it's a bigger trial, I should think they would...I think there is some human nature stuff involved in these decisions too, in that I'll have people who have relapsed tell me to wait for the Vertex, where others who have SVRed tell me to go now...as we all know, everyone's got their opinions...anyway, we're all ultimately responsible for our own decisions finally...vis-a-vie the crapshoot that this all is....my take...

[FlGuy]

You mentioned something I've wondered about for a while.  Let's say that vx completes its trials, get FDA approval and 'goes to market' and is an available treatment protocol.  All this happening of the next couple/few years.  What I've wondered, and not necessarilly a question to you , is how soon do insurance companies get on the bandwagon and include treatments like this and include them a 'covered'

[Forseegood]

yes, squeeky wheel princible is indeed a good thing in this instance, my doc and the dang recruiter probably wish I'd get sent to Iraq at this point, I bug them so much...but Goof told me a good thing (i think) to go to their offices and give them a cheesecake every so often, along with your requests...or flowers...hey, I'll wash their cars at this point, make them remember you....remember there are people on here who for sure thought they wouldn't get in, (The steady and true Susan for one) and they ended up doing just that...these trials go bigger...and I keep watch on all the wonderful "lab rats" and their good results...I'll keep my fingers crossed for you...2Irish says her last biopsy was only a 1, so she might wait till they go really big or 2 market, and I know you bought yourself some time too....

[friole]

Just for good luck I just emailed the Vertex recruiter in Dallas.  I had done so before and never heard from her and finally called her last month. (of course, that study was full).  But now I am a patient of that clinic and I could just kick myself for not asking the doctor if I could meet her (the research recruiter) when I was there in May.  I need to make a pest of myself, you know?  I would love to treat in the fall,,,,,,,
kathy

[Forseegood]

nah, back at ya! you've always been one of the fair-minded people here...and a good egg on top of it...believe me, I keep watch...and there are people who are so gracious and kind, good people...like you...and when I hear of them relapse, I just shake my fist to the universe! hey, give these people a break will ya!!!! And you'll get yours too Friole...along with many others here, I can feel it, do you know what I mean? I can just feel it, the tide is finally going with us, and not just the lucky 50 or 60%....be well...

[friole]

Hey, hope you don't think I am one of those who think you are trying to convince others not to treat.  I think you are a person of reason.  You think out loud and we all benefit by it.  There is much to be said about your decisions not to treat, and much more to be said about your health consiousness and nutrition.  It is a pleasure to be around you and occasionally on your wave length!
kaathy

[Forseegood]

first, nice to see you...youre on the back 9 of all of this yerself, and so glad to hear it...well, following your own logic (i think) if the insurance co's could see that they are going to be cutting treatment times in half (or maybe even far less, especially with all these peeps extending) I should think that would be incentive enough, if they are looking to save money (although they are so bone-headed about funding preventative measures, but I've been reading that that will be changing that soon enough also, for most diseases, something that would save them tons of money)... I've often said, that if you remember the last trials of current SOC...before they were officially "on the market" those trials were huge....on their last legs...I knew loads of people who were on those...Feds, insurance co's, are looking at an explosion of new patients with this...hit those long yardage drives Fldude...

[friole]

Both of you have great results.  I don't know why.  I suspect genetics have a lot to do with it.  Cathi - I am 1-1 after probably 35 years of infection - so similar to you.  I think I lean more with Ina in that treatment should be done while you are healthy - not after the liver has deteriorated.  I look at the inflammation to scarring as a flow.  Once it starts it will continue.

Here are some slides that show what hepatitis C looks like:

http://library.med.utah.edu/WebPath/LIVEHTML/LIVERIDX.html

Whereas I do think one should treat while healthy and before severe damage, I recognize that many choose not to.  Right now I am waiting too - for  the new meds to hit the market or for a trial - but only because I have relapsed after treatment.

It is such a personal decision.  Once you have made it, don't try to second guess yourself. Do have your enzymes checked maybe twice a year, and get a biopsy every 3 years (that was my hepatologist's recommendation).

good luck,
frijole

[GrandmaA]

I'm so happy for your GREAT biopsy results. I wish I had those results. You have plenty of time to make a decision. JmJm gives excellent advice and so do many others here.

Cathi, thanks for your good wishes on my retirement. Feels great even if I still have 15 weeks of tx left.

[jmjm530]

Wanted to add that it's good you're sharing your well-credentialed liver specialist's watch n' wait approach at least toward your treatment.

My opinion is that most come to this discussion group after their doctor tells them to treat, and therefore my guess is that this discussion group is underepresented by those that were told they had little or no liver damage and were told by their doctors not to currently treat. Of course this is just speculation, but it certainly was the case with me, having HCV for close to 40 years but arriving here at this discussion group around a week into treatment.

Anyway, thanks for telling your story as watch n' wait is sometimes an unpopular recommendation in a place where so many have or are treating.

All the best,

-- Jim

[jmjm530]

One doc said not more than once a year. Another said every 3 months. I suppose context is also important as you are haven't treated yet. HR's recommendation sounds very reasonable, like every 6-12 months I would assume. I've had two scans -- six months into treatment and around 6 months post treatment. I feel no rush to have another and will probably wait until someone local in my area gets a scan device. If I was not treating I'd probably make a trip to be scanned every 6-12 months but probably every 12 months just because I wouldn't want to obscess on HCV but that's a personal take. HCV played almost no part in my life prior to treatment. Other than some minimal medical monitoring, never gave it a thought. It was treatment that totally took over my life and to a certain extent the effects still linger, both physically and pychologically. Sometimes I have "flashbacks" to the treatment experience if that makes any sense. Has definitely left an imprint. Hope this helps.

-- Jim

[Forseegood]

sounds like you know a bit about fibroscans, prop more then I do...I guess I did one 4 months ago, when do you think I should do one again? HR said maybe six months or more, just wanted your take...thanks!

[ladybug52]

That's great! I can't add any thing to what everyone else has already said. It's a decision that you will have to make on your own. I love to talk to a lot of people before making an important decision to get their input.
Having said that, I made the decision to quit tx without asking anyone's opinion here! I made little references to the idea, got some responses, then quit on impulse guided by instinct. I am a stage 1, geno 2 with time to treat again with new drugs if I'm not successful.
Find out as much as you can and don't let a dr talk you into this if you're not ready. I interviewed 2 drs and they both told me I could wait, it was up to me. When I siad I wanted to treat, both dr's agreed it was what they would choose in my situation. I respect them for not trying to sway my decision by giving me their own opinion. I'm glad I txed.
I too feel guilty that I have less liver damage than a lot of people who deserve to be healthier than me. I don't know the big plan though, they may all live a long full life, and I could get hit by a car tomorrow.
We have a lot of wonderful people here, glad you stuck around after the rough start you had with us.
Hugs,
Bug

[pitter]

hi again,
thank you all again...everything you've all said made alot of sense..there is no clear cookie cutter right answere. i think i am just going to wait awhile...and keep my ears open for a doctor that is up to date on the latest and newest...it's still a place of limbo...i'm going to stick around here and learn more from you guys...
thanks for being so helpful, and willing to be...
one last question, does anyone know what kind of testing has to be done to monitor the progression of the  virus...does it have to be needle biopsys?  
and kathi , i do feel guilty too,...no one should have to go thru this ****..
ok thank you all so much again!!!
blessings and prayers

[cathi1]

Pitter, I have been shyly hanging around waiting to hear this kind of results from some one other than myself. Great news for you!  I too got my biopsy report last week with the same relults, 0-1!!!!   I'm 57, geno 1b. 38yrs ago I think. Any way , greatly relieved. I've been stuffing my face because of the worry for several months now; so grateful for all of you on this forum, because of what I've learned here. I will wait, get checked in 6 months. Most importantly, get over myself and stop eating myself to death!
I have, I must admit, been feeling guilty that I'm so lucky, after sharing many  struggles and bravery with these amazingly strong people. Do you feel any of that?  Why am I so lucky? Will I just be waiting for the other shoe to drop?   Most of all why aren't I jumping for joy?  Wa Wa Wa --Sorry

Grandma, To a new happy retirement !!!  Starting a new chapter, much happiness!

Rosebud, I believe you'll be graduating? with revelry and pride.  congrats!

wyntrre9,  my best wishes to you with this trial. I'm in awe of you!

To all, thanks for letting me in to touch base and learn what you have to teach. Thank you for your help, You are in my thoughts and prayers.

[jmjm530]

Bill: Based on these results alone, I personally wouldn

[Bill1954]

Hiya Pitter;

Great news regarding your results. This news itself definitely buys you the luxury of time to make decisions. Based on these results alone, I personally wouldn

[jmjm530]

Personally, I'd try and hook up with a doctor affiliated trial site or medical center that has or is soon going to get a Fibroscan device. Three or four trial centers now in U.S.A., several private units and my understanding is that more and more medical centers will be ordering them soon. That way you could non-invasively monitor your liver for fibrosis 2 or 3 times a year if you wanted to be that agressive. Other than that, regular blood screens including liver enzymes and CBCs, etc, would be in order. For Fibroscan trial sites: http://clinicaltrials.gov/ct/search?term=fibroscan&submit=Search

-- Jim

[pitter]

hi jm, thank you..am going to check that site out..i appreciate your help.
pitter

[Forseegood]

I think you got some great advice from Mike Simon, in that the vast marjority of are just laymen ultimately....but some of us have been around the block as far as info is concerned (not me necessarily)...and Jim said something very wise too, ... that we are as divided on this issue as the docs are...

My friend Ina thinks maybe all should treat as soon as diagnosed (hate to speak for her but she can sue me:) My doc, for example, is not in that camp, and thinks I should wait for a better trial that he's supposedly getting me into (see frustration with a busy liver center), and that's the thing I'm doing right now...but I just got a fibroscan recently and now I'm a low to middle 2 (fibroscans grade differently then a biopsy) But on that fibroscan, he did a larger part of my liver then a biopsy would do (realizing this fibroscan maybe graded differently then other fibroscans, a tip of the hat to you Jim) and he said in some parts of my liver I was still a 1, so if I got a biopsy in that particular part, perhaps I'd maybe still be a 1 on a biopsy now, if that makes any sense to anybody)

So I'm ready to do something a little more proactive...But I was a 0-1 for a very long time, I'm 53 now....and my labs are really good (low viral load, never over 200,000 since I've been evaluating, and my alts are little more then normal) so that gives me a little more of a  cushion, to MY doc anyway, he told me I have low-grade "smoldering hepatitis" and for whatever reason, my immune system is tamping down the disease pretty well (for right now anyway)...

I think it's a case by case thing, with all these variables counted in...if you don't have any quality of life issues, meaning that youre not symptomatic with the disease (many patients aren't) and youre okay (psychologically) to live with this hitchhiker for a time...you might consider waiting and evaluating every 3 months or so, I forgot if you said your age, that's another thing, once we're older, many of us wear out a little more, and the disease can get a little better foothold, but not all of the time...

Once youre in the game for awhile, you'll realize that there are more ways to skin a cat, (always hated that expression) and you'll be able to get some other consults...many times I've heard of patients just calling another docs office, and telling them they have this, and see if the doc will see you anyway for a just a consult...once you get all your ducks in a row (and I'd study the results of pending studies that are going on too, and ask docs and others about this as well) then you can make a tailored decision for YOURSELF...

cause youre the one that is ultimately responsible for your own decisions regarding your own body...just my take...I have friends who don't want to do any dithering and thinking about this at all, they don't want any parts of boards like this, etc etc...and they just follow their own docs advice as to what to do, and that's a valid decision for them...hope I haven't confused you even more...just bringing up some points that I think are valid, perhaps others would disagree, which is fine...this is a discussion board after all...best of luck....

[pitter]

my viral load was 3 million, does anyone know the ramifacations of that part? thank you again, pitter

[pitter]

hi , thank you for the positive you all sent me...i feel guilty because some of you are not well...and i have been reading what you are all going through ....and i am okay for now...but i know that this is just how life is..we have no control..and i want you all to know that i pray for all of you...and i know how this feels now...i did expect worse news...i was surprised...of course i am glad.
thank you for your inputs..
i am still confused tho...this doc is  a hepotologist...i have wimpy insurance..so i can't go to more doc's...i have been to a liver surgeon, who only knew the enzyme levels, she said they were low, and she sent me to GI guy, he said same thing..so i went to hep guy to get the biopsy...and he is a very strange man...and he believes in treating, he allready wanted to set up an appt. to talk about treating, then he said not to come if i allready decided that i wasn't going to do treatment. so i guess it is left up to me to decide...i guess i will continue to try to find answeres ...i really don't want to take the treatments...cuz i don't want to go thru that ,,,i know none of you want it either...i am sorry that you have to..but if i may say to you all , to keep the faith and live only  one day at a time...God says He gives us the grace for each day .
so, my question is ...can i wait and get some kind of tests periodically to monitor the liver ? is that something that people do? i guess i could call my doc back and ask him , but i am afraid he is going to push treating...he did say that eventually i will have too...but what bothers me , is that he was sooo text book about it...i have already read the exact stuff he said just by reading here and other places on line......but not every case is the same right? I think he is just going to go the text book route ...at most of these doc appts.that i went to , they talk about treatment like it is no big thing,,so of course they think you should!!!
sorry if i am babling, or if i repeated myself, or asked you to, i just don't know what to do.
any opinions are welcome and thank you all again.

[Pdilly]

Your results sound very promising.   Remember none of us are doctors but it does sound as if you have a few years to wait for the new treatments that should be comming out to help all of us.