6 months post tx and clear (so far)

I know the faces change here over time, but I still see the same nice people posting that I saw when I was going through my TX.  I completed my TX June 18th 2005.  I went to get my viral load taken 3 weeks ago and I'm negative.   This is truly great news, but I'm posting it more for others who are thinking about TX or struggling.   I'm a Genotype 2b with some fibrosis stage 2.   Not sure if that's gotten better since TX because I haven't had a biopsy.  My doc tells me that it's rare for the virus to re-appear in people that are clear for 6 months and other people here have confirmed this.    I hope everybody is right!   I haven't had much in the way of lingering sx since the tx, except my blood pressure seems sky high (145/95) consistently and I only weigh 141 lb.  My cholesterol is low 140s.  Ears are ringing a bit, etc.  I have to get this checked before my head blows off.    You see, it's always something.   I don't think this has to do with tx.  We'll see.  I don't feel or notice my liver anymore -- you have no idea what a relief that is to me.  I used to feel it all the time whenever I moved and it always reminded me and caused stress.  Thank you all for the support through my tx.  I'm serious too -- I probably would have caved in and not treated or quit if it weren't for people here.  If you're struggling, keep at it -- be reasonable, but keep at it.   If I didn't clear I was really eyeing Vertex's new tx as a hope for the future.   Who knows how that will turn out though, but it's looking really good so far.  

All the best to you ALL.  

Bluepeng.

[cuteus]

it looks like hep c is history with you now! you earned the SVR badge!
congratulations on the award!

[Mister beagle bailey]

It's good to hear stories like your and congrat! on being SVR.  I'm also 2B and started tx on Jan. 1, 2006, will be done on June 11,2006.  Hope I have the same results you have.

Stay well,

  The Beagle

[friole]

I remember you too.  You were about finished when I found this sight.  Congratultaions to your on your SVR.

[mikesimon]

I remember you too. Great news and thanks for sharing it!!! Good luck. Mike

[Moniker]

I started tx about the same time you finished. I'm 1a so I'll finish in June 2006. Thanks for letting us know the great news. Congratulations!!!

[Cbueno]

I'm glad I've found this space... i was diag. with Hep-C Grade 1, Stage 0, Type 1a in 2000... Probably have have it now for 25 years... my blood was rejected for surgery in 1988...

In 2000 i had a BX came back with mild portal Fib. Just had another BX and the finding are: Liver same as BX in 2000.

My AST and ALT levels are a little elevated but not much... RNA flucuates between 1m, then 300k and most recently 5m...

I am told by all the Docs to treatm but no hurry... I read about the success rate, and SIDE EFFECTS... I AM CONFUSED... Stay the course and i feel fine right now, or treat...

the only thing that's elevated is my BP which just started running at 145/95 consistently over the last 2-3 weeks... not sure if it's stress or just turned on me with age at 54...

[NYgirl]

Don't worry about the side effects too much (it sounds easy to say huh?).  If you read a lot in here you will see that treatment is not FUN but it is DOABLE.  Many, many people have NO SIDES AT ALL.  They just don't!

Your liver is in pretty good shape (relatively meaning in here) and you are in no emergency to treat.  You could live out a healthy life and never do a thing as it is a slow progressing disease.

HOwever if you DO want to treat...you aren't getting any younger (and don't worry none of us in here ARE ;-) there are advantages to treating as early as possible - logically it seems there is less damage to try to reverse you know? But your liver isn't in bad shape at all so you definitely have a better decision to make than some.

However if it's just a worry about the sides...we've ALL been there before and if THAT is the only reason you might decide not to - then go for treatment.  You might find you never have any at all!

It's a very personal decision and I wish you all the luck with it in the world.

[Cbueno]

Thanks for the feedback... Is Grade 1, stage 0 really at the low end? my brother is a doc and is anti treatemnt for early stage in that the physical side effects could be serious... blood, rbc, wbc, etc etc...

Does hep-c just kick in one day and i'm stage 3?

[cuteus]

Hola!
noone knows whether hep c is going to kick your liver quickly into stage 3 or 4 or not.  Some people advance quickly in the damage dept., but most don't.  Yes, I have read here of people that are at stage one and 3 yrs later are at stage 3 or higher. It does not happen often, though.  Age does make a big difference and the older we get, the lower the chances at erradication. Plus, we don't know when the new meds are coming, the best guess is 5 yrs. and we don't know how long people will have to treat and what the side effects will be. Everyone is hoping things will be better with the new meds, but no one will know for at least 5 yrs or longer. Hopefully, no extrahepatic manifestations will come your way, and no further damage and you will die with hep c, not because of it.  Many of us can't deal with the thought of carrying this virus within, year in and year out.  
Good luck in your quest

[Cbueno]

thanks... If you were 54, healthy with the exception of Hep C, grade 1, stage 0, would you treat?

also, what is Grade 1 and stage 0 mean...?

One of my neighbors is a nurse and won't discuss Hep C in much detail... she did Tx and and said she'd never do it again... she still has the virus...

My BP has normal to low all my life... do you think my obsessing over the last 3 months of giving blood, having a BX, CT etc is causing my BP to jump ?

[cuteus]

gggrrr! now I have to face up to my age!

I AM 54, was at stage one, grade 2(mild liver damage, but yours is even better), was diagnosed at age 51, was having a lot of fatigue and joint aches, plus some mild depression, DID treat my 1a genotype, responded slowly to the meds when still detecting the virus at wk 12, extended tx to 72-74 wks, and have been clear of the virus for over a yr now.  I have no regrets, no lasting effects. WOuld I do it again if I had relapsed? not sure I would, and I did not have extreme side effects. What I did have was enough to make me want to stay home every day, but I didn't. It would have been worse to do so. I wanted to quit every day, but force myself to go on.  Like it was said here, it is doable, but not fun! But it can cure you. It did me!
You have to insist on intervention for the aches when they come, if they do, and for the anemia.  You should not have to suffer through the added sides brought by anemia.  Foremost, you have to be ready for this journey, physically and mentally.
I don't know what your neighbor had for tx, mine was pegasys/copegus, which a lot of people said had less sides than the alternate interferon.
you have time to decide.

[Cbueno]

you're the best, thanks... so we have the same geno type 1a... and you cleared it... i don't have any fatique, aches, etc...

I'm retired and have the time to be a disaster, but i have also been to some of these support group functions and a lot of these people are drinking again, smoking etc...

i last drank booze 22 years ago... could alchol brought on the Hep c, a coke straw with blood...

[cuteus]

did I forget to mention that I hate young people that are retired?  


just kidding, of course, and so envious  ;-}

if you are feeling fine, and have no problems with living with the virus, then wait a while longer.  repeat the biopsy in about 3 yrs, and by then there might be some news on the new drugs, and aging might not make a difference in the chance for a cure.  at least you are keeping the options open.

THIS is the best site!

[Cbueno]

also, re: my sudden rise in BP which is now ave. 146/88... I started taking Milk Thistle and sal Palmetto... would this cause a rise in BP...

thanks

[anise]

That is wonderful news to hear!  Gives me great hope as I will be starting treatment this thursday.  I agree with you, that this site was helped me to make the decision to treat.  Otherwise, I was going to wait until a better treatment comes along.

Thanks everyone for being here.

[Cbueno]

thanks for the response... i feel fine, sleep well, etc... I don't eat much and never have... I quit smoking and have been sporting a patch for 7 months... maybe that supresses the appitite and causes my BP to rise... I actually felt better when I smoked...

ALT avg over 18 yrs is approx 42 and AST 32 on average... get my blood every six months...

RNA swings from 300k to 5m...it's all over the place...

2 BX reads are: mild nodular lymphocytic infiltrate of portal tracts associated with interface hepatitis and mild necroinflammatory activity. mild portal fibrosis, no evidence of steatosis, no evidence of iron deposition...Ultrasound and CT Scan show small oval soft tissue density above the pancreas just anterior to the porta hepatis... they said it could be a lymph node, or an extension of panc. tissue... having a endoscopic to be certain... if i don't push the docs they don't read the reports most of the time... of all the crazy stuff i did 20-30 yrs ago now i'm mr. what?

[lackalustre]

bluepeng: you can get a fibrosure test to determine liver damage. its a blood test.   so glad you are cured.  i treated in '03.  2b cleared.   i was a low number 1 or 2 on the fibrosis scale with the fibrosure test.  i never biopsied but i feel my liver improved.   i had some symptoms of cirrhosis.
   lisa  i could not change insurance companies after tx.  even though i had the dr. write them letters saying i was clear of the virus and liver tests were normal, etc. etc...   i have been told that all major insurance companies will not give us coverage if we have history of hepc.  cleared or not.   anyone else??

[lisa1975]

Hi.  I was diagnosed with HCV Genotype 2b in 2003 and chose the treatment.  I only had to do the 24 weeks, I've been undetectable ever since.  My question is has anyone been able to go on to buy individual health insurance after treatment?  I have tried and keep getting turned down in the medical underwriting.  It does not seem to matter about the treatment or the results, just that I have HCV.

[FlGuy]

I read today that the BP range (I'm 54 too) is about 135/85.  So you are slightly above normal.  Although I don't have the insert with me. I think the patch can impact (raise) BP a little.  It's good that you put down the smokes, more than I can seem to do.  Getting any exercise on those old bones? Sounds like, except for the Hep-C, liver damage and the Blood pressure, you're in pretty good shape.  Sooner or later, you'll have to deal with them.  Reaseach, study and find a doc you trust and think it over. Retired at 51?  I could have done that too but all the overpasses were already occupied.  Good luck.

[can-do-man]

goof says.... Anyone care to take a stab at the percentage of the treating population that goes the distance without sides?
________________________________________________________________

Id bet the odds of winning the lottery are better.

[lisa1975]

Thanks for the response regarding health insurance.  Congrats on being clear.  I guess I am in the same boat, I just hope I can continue to afford the insurance I have since there are not many other options.  Good Luck to you.

[friole]

Your bx says:
"mild nodular lymphocytic infiltrate of portal tracts associated with interface hepatitis and mild necroinflammatory activity. mild portal fibrosis, no evidence of steatosis, no evidence of iron deposition"

I read this bx to be grade 1, stage 1......

  Grade being the amount of inflammation and yours is mild.  However "necro", I believe, refers to necrosis, which is cell death so (maybe) that means mild inflammation which leads to cell death(?).

  Stage being the amount of fibrosis (fibrosis = scarring of the liver tissue) and you do have some.  That does not equal zero - I would call it a one.  Early stages to be sure, but none the less, the scarring has started.

Good news - no steatosis - that is what is called fatty liver, and no iron deposits.

In fact, your biopsy reads almost like mine. I am a 1a with a grade 1, stage 1 biopsy. The damage all starts with the inflammation. At first the inflammation is localized around the liver cells, bile ducts and veins.  Then is starts spreading out and changing the architechture of the liver. When I posted my bx results in June, Willing (a member) posted some excellent links to biopsy slides that kind of helped see what is happening.  Unfortunately, I can't find those right now.  

I am 58 (and was 57 when I decided to treat) and have probably been infected for 35 years.  Like Cuteus, I decided now is the time.  Kids gone from home, not retired, but dang good medical insurance, health in all other ways with no symptoms of C except maybe fatique) and the mind frame to finally do something (knew I had it since 1993).  

cbeuno, before you decide anything do a lot of research.  This is one of the best places to start.  Please give it a whirl:
http://janis7hepc.com/

Much luck, and welcome to the "club."     friole

[PKCO]

You have absolutley no reason to treat. You have no damage after all those years of infectivity. Your brother is right. The risks are not worth any possible rewards at this point. Twenty-five years and no damage ? Treatment is not indicated for someone like you. Not even remotely. It would make no sense to put toxic drugs into your body which carry the potential of serious and sometimes permanent effects to fight a virus which has done no harm after a quarter century. Go tho the drug maker's websites. Look for their hepatitis c drugs and read the prescribing info (Warnings and Precautions) for interferon and ribavirin. I think you will see what I mean more clearly. www.roche.com or www.schering-plough.com.
Best regards,
PK

[GoofyDad]

<i>Many, many people have NO SIDES AT ALL. They just don't!</i>

I've heard this sentiment before. Anyone care to take a stab at the percentage of the treating population that goes the distance without sides?
<hr>

CBUENO: My hepatologist feels damage is non-linear - he thinks it accelerates over time. But still, you seemingly have have very little damage. I'd think you could likely go forever without significant progression. But what do I know?

BLUEPENG: Congrats to you!!!!

  

[cuteus]

good job, friole. I thought that was strange that he was classified a stage 0 with those changes. Necrosis did not read like 0 damage to me.
good job!

[Cbueno]

to all you fine people... Thanks for all the feedback; it's helping me make a decision... I've been to really fine docs, insurance and finances are not an issue... i think the docs are spring loaded to say treat... I can deal with bad side effects, however why go there until i'm at least stage 2, if i even get to stage 2...

I'm doing some research on my Grade and Stage as a result of feedback from friole or PK? Right in front of me is the Path report which says Grade 1, Stage 0, type 1a... these BX were done in 2000 and then again last month.

I love reading the success stories and admire those who are fighting the good fight...

There is more knowledge on this site than any one Dr. has.

[Cbueno]

is it possible to be Grade 1, Stage 0? how do you feel now that you are going through tx

[friole]

http://www.pathguy.com/histo/000.htm

that is not the websight I was looking for but it has a lot of slides including lymphocytes you might want to look at.  I fear the sight with liver pathology slides is no longer available.

Can you have a grade 1, stage 0 -- yes, absolutely. That would mean mild inflammation but no fibrosis and your biopsy says mild fibrosis and that means 1 not 0.  When my biopsy report came, it was not staged or graded.  I asked my surgeon to have the pathologist stage and grade it, but in the meantime, it forced me to read up.  I literally looked up every word in my biopsy report - that Janis websight gave me the most information - and came to the conclusion that i was a 1/1.  And when the pathologist staged it, I was 1/1.  Now I wasn't going to treat if I was 1/1 but after reading on this forum, and studying about biopsies (plus my age) I decided not to wait anymore.

How are my sides?  There was a pretty good post a day or so ago on that and I put my 2 cents in there.  I am faring better than some and not as good as others.  I still work full time - in fact 6 days a week now - a desk job, but rather stressful.  My eyes are pretty sunken in and I have lost hair, I am on blood boosters for the drops in red and white cells, but I have to tell you, cbueno, that all sounds a lot worse than it is.  I am at week 31 and have been clear since at least week 20 and that keeps me going.  I will be very glad to clear this virus. You do indeed have a hard decision to make.  Ask lots of questions.  This is a great place and you are amoung friends

Cutie -- I have googled necroinflammatory and do you think I can find a simple definition?  Of course not.  All I can seem to find is paragraphs that use necroinflammatory in it.  It seems to describe liver inflamation (inflammation) - that is all i can figure.
frijole

[cuteus]

you will hear folks say, it is not worth it and those that say there is a better shot at a cure with mild damage. You might not progressed to two, at all. No one knows how to predict this, though.  If you can psych yourself to live with the condition for the rest of your life, then chances are you might not develop any severe damage. There are some articles tying hep c to diabetes, neurological problems, gallblader (gallbladder) problems, arthritis, etc. Hopefully, you will experience nothing at all related to hep c. There is no way to tell at this point.  The lower the damage, the higher the chances at a cure. read as much as you can, including this article
http://www.prnewswire.co.uk/cgi/news/release?id=143867

and then make your choice
gl with it

[Cbueno]

ok amigo... if I assume I'm stage 1, grade 1, am I really playing craps with my life to wait and see if I even progress to Stage 2 in 3 years when I'll be 57?

I'm not afraid of sides, just the thought of pumping interferon into my blood and liver with mild case of C doesn't stack... I think I'd be potentially doing more harm to my Blood etc...

Was everyone who died of liver cancer at 75-80 yrs of age before 1992 really a victim of Hep C...

I'm losing weight in the last week thinking about this and my BP has jumped to an average of 145/88...

thankyou all for listening...

confused in Newport and researching

[PKCO]

Knowing the situation that exists right now with the various current tx regimens and balancing that with the very large numbers of hcv drugs in trials I would definitely hold off on tx. Not worth the known risks in your case,either. This disease moves very slowly in 99.9999% of the hcv population. If you progress to stage 2 that's where the real decision making takes place. Stage 2 is the hardest stage to be at when deciding to treat.
Stage 1 , 3, 4, are no-brainers. Stage 2 needs careful analysis of the facts to make an informed choice. Geno,length of infection, age, with some predictors needing to be given a little more weight in their predictive value.

But the short answer is: There is no reason to treat at  stage 1 that can hold up to logic.(Barring unusual extenuating circumstances). Most people who treat at stage 1 are prodded by their docs to treat, or they are one of those people who get squeamish when they think a virus is in them. For some reason they think viruses are live critters. They are not alive using  the classic definiton of what qualifies to be called 'life".
Best regards,
Cbjuan

[Cbueno]

i just pressed the Pathologist for  grade and stage... what a mess this process is...

she did the pathology rpt. on 1/18/ 2006 and said the histological features of the current BX were similar to that taken in 2000.

I pressed today for a grading and stage... she logged back into the system and gave current a grade 2 stage 1...

I called in to get the BX sent to my Doc. and they don't know where they are...

How can I trust the grading when she didn't have them in front of her when she submitted the grading 2 days ago/ 28 days after her initial evaluation.

I saw another doc today who thinks I have had hep c since i was born as my brothers and sisters have it...

Is grdae 2 stage 1 a real Danger zone when 5 yrs. ago they had it grade 1 stage 0...

[Cbueno]

pk,

would you treat on a grade 2 stage 1, or do i have a few years to wait?

[Cbueno]

thanks for your quick response... you seem well informed... nygirl is optimistic, cuteus, always good, and your sparring with kalio1 adds a needed lift to the tedium we are all in...

thanks

[Cbueno]

thanks for the informed opinion... i need some trim and a walk on the beach

[PKCO]

You are in a very good position to relax and learn about hcv at your own pace. Take some time to explore the pros and cons weighted against your particular liver condition and overall health. Read the prescribing sheets for the tx drugs. If you feel like this sounds like it may be a good plan, then get with the doc and set up a "watchful waiting" program.
Have the doc expalin how often blood labs are needed and when a biopsy might become a useful tool. You are only stage 1, but you do have moderate inflammation (2) indicating viral activity. So keeping an eye on it is the prudent thing to do. BTW the inflammation can go down anytime and stay that way. Happened to me and others I know. Sometimes it can be as simple as changing meds. And I wouldn't be suprised if the doc would want to wait 3-5 yrs before another bx.

As for deciding to treat,(if it was me) you know what my answer would be. If, after a review you decide to treat I'll be pulling for you 110%. Disagree with your decision-yes-but any support I could offer you would be there. We're all in this together.

Best regards,
PK