to tx or not tx

49 yrs old
genotype 2b
vl 750,000/ml
liver func. normal
asymptomatic.
awaiting biopsy results.

anyone similar tx successfully? SVR how long?
still indecisive about treating.
those who have, what about sides? what were they like?

[bolger]

after biop results i'd like to get a 2nd opinion from a specialist before deciding on tx.
anyone know one in nyc or a good on-line resource for this info?

[GwithHepC]

Hi:

I go to the <A href="http://www.hepccenter.org/">Center for the Study of Hepatitis C</a> in Manhattan.  You might want to give them a try.

Good luck!

G

[bolger]

who have you seen there and what have u learned?

[cuteus]

I'm in suffolk and going to the LIJ hepatology unit in Manhasett.
I figured he is the director of hepatology in the hospital, he should know.  I am not crazy about the PA, but so far so good.  

I don't know if the treads are still around but someone posted a similar question many posts below and got many answers and opinions.

[raheem]

bolger, My understanding is there's no way to accurately predict the progression and severity of HCV. It really seems like it's different for everyone. Accordingly, I don't think you can say with any reasonable degree of medical certainty that you have a 20%, 50%,80% chance of not getting sick etc. Also, studies indicate that HCV typically starts to cause problems (cirrhosis, liver cancer, abdominal fluid retention, sleepiness, confusion, bleeding esophagus, etc.) 20-30 yrs. after infection. If you have HCV and are young and healthy, that is the time to be treated because the treatment can be physically and mentally rough on some folks. Moreover, why wait until you are old, sick, perhaps uninsured, unemployed, alone, maybe develop another medical condition that complicates or eliminates tx options and maybe have unwittingly infected others? I am genotype 1b, viral load 2.2 million, 50 yr. old male, HCV for 27 yrs., no cirrhosis or symptoms. I am currently on tx week 42/48, taking Pegasys and ribavirin, responded at week 12. For me, tx is rough but manageable. If you have HCV, drinking even moderate amounts of booze clearly makes you more likely to develop cirrhosis.(God, I'd love a single malted scotch!) Having said all that, some folks DO clear the virus on their own somehow and others will die with it but not from it. If I was you, I'd read up on HCV and try tx.  Genotype 2b's have a high success rate and tx is typically "only" 24 weeks. If you find it too difficult, then stop.  Don't let it fester into an untreatable disease.  Just my opinion though.

[GwithHepC]

My doctor is Dr. Talal.  He recommended I don't treat right now - he feels I can wait till better treatments come along.  However, I am genotype 1a with mild scarring (Stage 1-2).  Since you are 2b, you are in a much better position to treat in terms of length of treatment and chance at SVR.  Everyone is different, and the decision to treat or not is highly individualized.  

Let me know if you want more information.

G

[bolger]

my dilemma is -
the word no longer used is 'remission'
my understanding is, it's still remission not 'cured'
I realize that if there are people out there who've had SVR for 15 - 30 yrs, they're not on these boards.
also realize that would be quite a feat since hcv wasn't even identified till 1989.
never-the-less - can't seem to find anyone that can say - i've had a SVR two or more years.
also realize that if i were in that fortunate position i'd likely not browse the boards anymore either.
why wait till i'm old, alone, w/out insur etc?
why possibly jepordize my present 'good health' if it's going to come out of remission and possibly open the door to other possibly avoidable complications now?
I'm reminded of all the poor folks/w HIV that got their hopes up about AZT. that turned out to be quite a mess.
it's a real **** shoot.

[bolger]

but the bottom line right now at least is;
i need to get the results of the biopsy first.  had it this week.

thanks for info about dr. talal.

[nurse12hr]

My husband has been an SVR for almost 2 years.  When he had been clear a year post treatment, yes, indeed his gastro used the word "cured".  Said chances of relapse are very slim now.  Doc said we don't really even EVER have to do another viral load unless he really just wants to.

He was a type 3a, with mild cirrhosis.  He was first treated when Infergen was the newest treatment--did a year and relapsed by 6 months.  Then was treated with PegIntron alone for a year, and this brought him to his current SVR state.  

Good luck to you, whatever you decide.

[painted**posies]

Wow!  This is right where I am. I'm a 61 year old woman who tested postive three years ago after an acute episode. The Dr. believes I was exposed after a minor surgery. My first viral load was 600, the second a year later was no measurable viral load and my most recent was over 50 million. I'm from MD but spend winters in FL where I am now. The Dr. down here is the one who originally diagnosed me and is recommending treatment now. I asked him if he was 61 and was faced with the same decision as I am, what would he do. He just smiled and said that I might not face the more serious consequences for 20-30 years. Then he smiled again and said, "I'm a gastroenteroligist. My job is to tell you about any treatment or possible cure that's available".  I have pretty much decided, though granted I need much more education, that I want to have a liver biopsy first. If everything is pretty good...no real liver damage...that I will opt out of treatment.  If the odds are with me, I have 17 more years before I'm at risk of liver cancer and by then I'll be 78.  Given that I'm new at this (was in denial for three years until the large viral load whacked me out of denial) and relatively uninformed, is my thinking distorted.  In reality, I am 61..not a young person...and quality of life is very important.  In the meantime, I'm reading and educating myself all I can. And when I return to MD in a few weeks, I will see what my gastroenterologist there has to say.  Does that sound logical?

[honey1616]

Yes...It sounds like you are doing great and getting all the facts.  I know that the viral load at times can scare you as mine is high but you can't let that be the only factor in your decision and getting the bx is a great idea.  Good Luck to you in your decision!

[bolger]

i'll let you know the results of my biop.
i've prob. had virus 20 yrs +.

some issues i have are - if my gastro reccs tx i'll be inclined to go that route.
my attending, who diagnosed me 7 yrs ago is to this day, against me undergoing tx, but wants to know biopsy results first.
his thoughts - you're liv function is normal, you feel ok, why not wait?
my plan - wait to hear biop result, hear what gastro says - speak again to attending re: biop results - get another opinion from another liver specialist - then decide.

have to say - i was semi-anti tx till found out i was 2b. the possiblility of shorter tx time got thinking more in favor of /  though in time i would of likely opted for tx regardless of genotype.

[GwithHepC]

CONGRATULATIONS!!!  I am very happy for you.

Take <B>THAT</b> Nurse Ratchet!

G

[audreywald]

YEAHHHHH

Doin the happy dance for you!!

Bolger, my best guess for you is because of your genotype you have an excelent chance of SVR. Plus you only need (probably) 24 weeks.

I know of a number of people more than 2 years SVR. Probably because I am in the 12 step world, a LOT of us have it.

My belief is that if it is unbearable you can stop. This is what my doc said to me. Everyone's sides are different. Just as is everyones outcome.

Do you drink at all? You have a much higher chance of disease progression if you do. *(this is from my hep doc) How old are you?

There is a lot to be considered, we are here for you in any case!

[DebbieDo]

Great news.........I'm so thrilled........lol.......its so wonderful.......im sure you are dancin like a fool........Girlfriend, have a good weekend........Deb

[oldhippiechick67]

YEA WTG girl!!  I was sooooo hoping you would get good news!  thats fantastic.  I am all kindsa happy for you!  Auggieaz/OHC

[hepcbilly]

I am SOOOOOOO HAPPY 4 U!!!....THIS IS THE BEST NEWS !!!! I'm gonna call you !!

[new-sojourn]

I WAS 2b, b/now 18 mo post-tx, b/I cl'ed after only 18 days of tx, so I've been virus free for 23 mo.  Bad transfusion in 7/79.  For me, sides were no big deal, lifestyle changes no big deal, being disease-free VERY BIG DEAL.

[britgirl]

I was in a similar position to you in that I had no symptoms and thought "why jeopardize my present good health?". I was finding out I was genotype 3a that changed all that for me. Two reasons, only 24 weeks tx and at a lower dose of Riba, a much better chance of success (80 - 85%). I have been SVR for eighteen months, finished tx Sept 2002. I worked all through and didn't suffer too much, no insomnia, no depression, no low platelets, WBC,RBC. My hospital do indeed use the word "cured", and have completely discharged me from their books. They say it is unnecessary for me to have any more PCRS and I won't .
Best of luck in whatever you decide (PS.sorry if you thought I was rude the other day. I had just two minutes at work and "your point is?" was nice and short. I really was confused by your comment, not trying to be a smart ass)

[willing]

great news on your field goal - keep it up. Yeah, post two, it's that kind of a day.

[bolger]

encouraging thanks.

britgirl - don't recall you being rude or responding to any of my thoughts.
someone else? brain fog? you? me?
thanks for your recent views though.

[CARUU]

I'm so happy for you.  Great news!  Congratulations! caruu

[thanbey]

You are spot on the right track.

Interferon therapy can be very hard on an older person (even a young and vibrant older person such as yourself!) and the expected results are not so promising as they are in people under 60.

There are a lot of reasons you have to consider the treatment carefully. Your doctor was incredibly candid with you. Doctors do not want to be sued for "withholding treatment." Malpractice being what it is in this country, sometimes a legal opinion and medical opinion are hard to tell apart.

Anyway, live well. Make excellent, deliberate and careful lifestyle choices to preserve the health of your liver and the rest of you. While liver disease can progress faster in someone infected over age 50, it may not matter that much at the end of the day. By the time you have any serious liver damage, you could be into your 80's or even your 90's, God willing.

Risks of interferon treatment (especially heart complications) increase the longer you are treated and the older you are.

I am not a doctor and this may or may not apply to you. Engage this doctor in more discussion when the biopsy report comes back and be very clear that you are open to the truth. Sounds to me like your doctor will work with you and give you good advice.

I hope this helps,

thanbey

[hph5477]

Painted Posies -- I think you are doing right.  Only suggestion I'd make would be to keep a close watch on it and have a biopsy every few years to make sure you are not progessing faster than expected.

Befuddled - Congrats on the low VL at 12 wks.  Mine was down to 370 at 12 wks and am hoping for undectectable at 24.  I don't remember your genotype...are you doing 24 or 48 wks tx?

[mrBenny]

bolger:  I'm 49, was genotype 2, stage 2 fibrosis, did 24 weeks of pegintron/riba.  Clear at 12 weeks into tx, at 12 weeks post, and 24 weeks post (recently).  Sides:  low RBCs (fatigue), low WBCs (had a peg dose reduction midway), depression, hair loss.  Kept working as software engineer.

britgirl:  you're thinking of balrog1 with the "your point is?", I think.

[bolger]

how bad was the hair loss?

[bolger]

any data suggesting success/failure rate is diff for males - females?

[mrBenny]

I thought I was getting away without any hair loss -- then it hit at about 13 or 14 weeks.  It lasted about 4 weeks, and was alarming to me. I was in one of my long hair periods, but cut it short to reduce the shedding volume.  

I don't know if any is growing back, but I'm a little thin in the back now.  I think the hairs that were sacrificed didn't have the will to give it another try after tx, and I've fast-forwarded to a later age in some respects.

In most respects, however, I feel quite healthy now.

[britgirl]

My brain fog not yours! Was thinking of "balrog"

[Indiana]

Nope...There's no reason to treat this. Hcv kills 8,000-10,000 people every year. They all lived with it and are now SO happy.  
  Hcv is the leading cause of liver transplants. I am just sure that all of those folks with all those new livers who "still" have Hcv are extatic that they got to live with it.
Just think of all the people who are happy that you will live with this. All those doctors who get to do all those tests...all the time. They can make all kinds of money for many years doing this. All thos insurance companies who don't need to insure you because you have a chronic condition. They are all REAL happy since it will get expensive for them when you do start gettin sick. Your employer is likely smiling simce you can't change jobs or you will lose your health insurance. He can just use you until you start gettin sick....and then he can fire you because you become a drag on his workforce. And The Dragon is surely all excited about this. He gets to eat at your liver....every minute...of every hour...of every day. He never sleeps. He's happy...all warm and secure in there....with an unlimited supply of cells to destroy.
Yep...I want to live my life like that. Always talkin about it. Telling any potential sex partner that "You really have a low risk if you sleep with me". Telling every doctor and dentist that I have this so they can prescribe only "liver friendly" meds that may be less effective for whatever ailment I may have. I want to always think about eating only "liver friendly" foods. And Heck, I never wanted to drink alcohol anyways. Yep, I want to freak out every time I get a cut and explain to anyone I may bleed on how they now need to get tested.
Yep, I want to go to bed every night wondering just what Stage/Grade my liver is at now. Knowing that the older I get and the longer I have this that my odds of clearing this go down. Knowing that the more damage I get the lower my odds are of clearing. Knowing that the damage we have when we start tx is typically the damage we are left with even if we clear.
Nope....I can see NO good reason to do tx. I want to live like THAT.
But it's too late for me. I did my tx and killed my type 1b Dragon.....over a year ago. And now I am healthy and happier that I have ever been. I have no lasting side effects from the tx. I have no reason to test again. I can have a beer if I want to. I eat what I want. I have not been sick for even one single day since I finished the meds. My hair came back, my skin is fine, my nails are healthy, ALL the sides went away.      
But still, I am sad.....because now I don't get the chance to live WITH it. I will miss all that FUN.

[bolger]

i'm interested in 'in most respects i feel quite healthy now'
did you feel bad before you started tx?

here's a reason i'm asking.
at this point - (before having biop results which i'll have shortly), my attending dr. thinks i def. should avoid tx and wait.
i'm asymptomatic.
he's the same age as we are so he's aware of the age thing.
it's a tough call.
if i take care of the liver (which we have to do either way, tx or no tx) i could escape a potential bullet.
if i don't tx i could be walking around wearing a target.
hard to decide. not enough people out there, that i can find, that can get that life insurance because they've got a SVR for longer than five years.
18 mos SVR is longest i've heard of so far.
soujourn - yes 23 mos but bottom line is still 18 mos so far at most.
not that this isn't INCREDIBLY positive but there's still a shot it can come back. we don't have long term results that i can find.
IF, and I mean IF, i come out with biop. results that show minimal damage, I'll have to make a tough decision.
if the organs' in trouble then it's a no brainer.

[bolger]

good points
but can you prove it's gone?
long term?
only time will tell for ALL of us.

[bolger]

were you ill before u started tx?
the liver is regenerating all the time which is a reason it's such a slow moving disease.
what was genotype?
what stage liv damage?
how old are you?
all cases are diff.

[hepcbilly]

Point well Taken !


Mr. B

[Bartt]

I was diagnosed with geno 2b, VL of 1.5 million, minor fibrosis in 1999. I was 48. Was one of the first to do Peginterferon & Ribavirin. Within 8 weeks was declared undetectable. Has been three years post treatment and still undetectable. After six months of SVR Doctors are calling it a cure as opposed to remission.

Here's the deal. I would get a biopsy and to see extent of liver damage, if any. If none or if minor you have to make a decision whether to do treatment or not. Being a 2b you have an excellent chance of kicking this virus. If you were a geno 1 I would suggest you hold off unless you had severe or progressive liver damage based on 1 - 2 biopsies with 3-5 years in between. An approach would be to do the treatment and make sure your Dr. agrees to check you at 12 weeks. At this point you will have a good idea if it is going to work or not. You can decide not to do the treatment but will need to adjust your lifestyle. No drinking AT ALL.

I decided to do it and it worked. I am back to my former lifestyle which is drinking moderately on the weekends. My last physical in November was virus = 0, ALT 28, AST 20!

Treatment is tough. But I learned a lot from it. I really appreciate life sooo much more and empathize & sympathize with everyone who has a cross to carry such as hep or cancer. Pray about it. I'm sure you will make the right decision for you.

Regards,
Barry

[bolger]

there is no proof to me yet that any of you are 'CURED', long term.
you bash the med communitiy on one side cause they can treat you forever then assume you're now set for life after being guinea pigs for a potentially very risky experiment.
I PRAY i'm wrong.
Chances are 99.7% i'm going to dive in right after you but there are two sides to it in my opinion.
Thalidomide.

[bolger]

see my 'bio' top of thread.
first one.


add to that;

(1) I don't drink
(2) had the biopsy on tues. waiting for results.

appreciate comments. case sounds similar to mine cept i don't pray a lot.
how bout the hair?

[bolger]

three years!
VERY encouraging.

[madbyron]

Man, I was just trying to think of a way to say all that. You just saved me a lot of typing!!! Thanks!!!

[Indiana]

Prove it's gone? Well, I have been on NO meds for over a year. I was tested down to 5 iu/ml after a year and was undetectable. The original Peg trial patients (a few thousand folks) are now going past the 7 year mark. They are still clear. Thats where the word "cured" is comming from. The odds they post now are that if you are clear at 6 months post tx your odds are 95% that it is gone. Past 1 year and that number is 99%. They think that any who get it back after 1 year are new infections and not a relapse. If its gonna come back it does so right away. I have seen it happen too many times. It comes back FAST.
I am 52 (I think).
I WAS a type 1b....probably had it for 25 or 30 years.
I had no discernable symptoms....I felt fine
I had no biopsy so I don't know what damage levels I was at. I was going to treat this anyways so I saw no need for a biopsy.
I did have a constant high white count and my alt/ast levels were always on the high end of normal.
I did get sick (flu's and colds and infections and such) a fair amount of the time but I cannot say with certainty that it was related to the Hcv. I do think it's noteworthy that I have not been sick AT ALL since I finished the meds. I now get paid for my unused sick days instead of using them all up every year.
There are folks here who are cleared past 2 years. They just don't post often. They are out living now. They pop in sometimes to say hi.
This part, the part about deciding wether or not to do tx, is probably the hardest thing to do. I understand. It's scarey. The side effects can be horrible for a few of the folks. But since the Pegasys was approved that problem has gotten WAY better. I did not have that option back when I had to do Peg/Intron. I did 50 weeks of tx. my sides were bad, but some had it worse. I saw some of the Pegasys folks,like Britgirl, who had NO discernable sides at all. I was jealous. But still, I missed no work really. I used all my sick days and vacation days fighting this. But nothing beyond that.
Within 2 weeks after I was done the sides started to lift. My thin hair came right back. The skin problems were better after 2 months and got better in stages every month. By 6 months post I was feeling GREAT. And have ever since.
It's a tough decision. To listen to us talk about the sides here would scare anybody. But the truth is that they just aren't as bad as they sound. It makes us feel better to talk about them.
Weigh your pros and cons. You really need to be able to commit to this if you are gonna do it. Otherwise the fear will turn into mild depression and you will be miserable.
There IS a real prize to be gained at the end though. I am here to testify to that. It really IS all worth it. I would do it again if I had to go back and make the decision. I have absolutely NO regrets.....none.
Good luck as you wrestle with your fears on this. Do let us know what you decide. Either way I support you.

[britgirl]

A virus is not a cancer. It cannot be "in remission". It is either alive or dead. If you still have a tiny little bit of virus left when you finish tx it will replicate like mad and show up on your next PCR test (in 3 months or 6 months). If it doesn't show up for a whole year after tx you are considered cured. I am interested to know why you are so sceptical.

[bolger]

i'd like some info on those folks past the 7 year mark if anyone can guide me towards it.

skeptical? - no. realistic (for me). i know what it's like to have the 'mental' part take over. every second, every day, every heartbeat, every breath it's eating, eating, eating.
I know lots about this. heck, i'm almost used to it.
was diagnosed 7 (going on 8) yrs. ago.

these are the reasons i can think of now that i might hesitate.

(1) there is no vaccine. it's not polio. yet. 5 yrs. down the road may find a cure not available to those that have undergone tx, and yes, come out of remission, for whatever reason. It might easily be just as available to everyone. Today, i've still a choice about that, depending on biop results.
(2) the body produces small amts. of interferon. (i realize this is preaching to the choir) When it's bombarded w/ it it's chemotherapy. If I'm doing chemo. i want good odds there's payoff at other end. my info tells me, because of genotype, low vl etc. the odds are decent.
(3)having not read anything about these folks that have been 'cured' since i've been diagnosed, i can only formulate my opinions on the info i gather.

here's where it's at, for me, so far;
(1)my gi will give me his opinion w/biop results. as of now he's said there's a 70% chance i can be 'cured'. discuss more w/him post biop results.
(2)my attending is against TX today, but will discuss again w/ biop results.
(3)many many on message boards have decided against tx for many many reasons
(4)MOST folks that have undergone tx, that i've read posts of, are pro TX but except for one, who's had a SVR for three yrs., they've only been 'cured' 18 mos or less, SO FAR. I realize this could be because the long term SVR has gone on w/their lives. I would too. None-the-less, i can't be SURE about that.
(5) i've read one post from a person saying it came back after four yrs.
(6) obviously the majority of the posts i've read, of those that have tried tx, and failed  a SVR, understandably regret going thru it.

this is the info i've gathered so far.

my personal info is the top post of this thread. missing is, i drink so little that going w/out it is not an issue and i'm otherwise healthy.

armed w/that info here's what I plan to do.
(1) get biop results (Tue. at earliest) I've had the biopsy.
(2) discuss results and options w/ GI
(3) discuss again w/attending
(4) get 2nd opinion from another hepatologist. (i've already reached out to a few)
(5) make a decision.

in small amt of time i've left before results, i've little more to do but process as much info as i can because, like some of you, the mental obsessive aspect of it all bothers me very much too. I'm not sure i can NOT undergo TX if it's an option.
i have the scripts lying before me waiting for fulfillment - or not.
800mg cop/day
1 peg pop/wk
time will tell. (wonder how many liver cells this opus cost me)