Geno 1a 2b together - Should I treat even if there's no liver damage yet?

[scubadiver30]

Hi y'all. Greeting from Spain again. I'm a 44 year old male.
Weight 90 Kg. Don't drink or smoke. Diagnosed HCV+ 6 months ago but i do think I have it for 25 years now. No particular symptoms but sporadic mild pain in the upper right quadrant
My baseline stats
Stage 0/1 (no biopsy) Doc says is not necessary???
ALT 80
AST 39
GGT 23
VL 5.000.000 (too high :-(
Geno 1a and 2 b (yikes)
RBC   5.0 X10^6/uL
WBC
Neutro 40.9%  2.5 X10^3/uL
Linfo  48.7%  2.9 X10^3/uL
Mono   8.3 % 0.5 X10^3/uL
Eosi  1.2%   0.1 X10^3/uL
Baso   0.9%  0.1 X10^3/uL
Plateletes 224 X10^3/uL
Protrombine 92.2%
Albumin    4.9
ALP        49.0
Total bilirrubin  0.90.
No problems with insulin or thyroids.
My doctor wants to treat (he says its my choice), but I'm afraid it can affect my work performance and besides is tough to get rid of the 1A altogehter right?. If i were 2b only I wouldn't even think about not doing it. So I appreciate your comments on this. I know you re not MDs but you're even better: the voice of experience. I'm getting a fibroscan on monday anyways
Thanks a lot and god bless all of yous
scubadiver

[jmjm530]

How do you know you're stage 0? Was it Fibrotest? If it's confirmed by Fibroscan, my opinion is not treat at stage 0, or even stage 1 for that matter. Hep C is a very slow moving disease and newer, and many doctors are very excited about newer, better drugs now in trial. But if you decide not to treat, keep up with periodic Fibroscan's. You're ahead of us over there, but we have three Fibroscan trials going on now for FDA (America's Drug Cops) approval. My feeling/hope is that Fibroscan, combined with blood marker testing will replace biopsy within five years in all but a few cases.

-- Jim

[jmjm530]

Just a couple of points on the reasoning. Geno 1's are the hardest to treat so you're looking at only around a 50% chance of being cured with today's current drugs. You're also looking at generally 48-weeks of treatment with some very powerful drugs. Some people glide right through treatment, but many of us have a very hard time, both physically and mentally. And how much do we know about the long-term effects of taking all this interferon and ribavirin? And then there's the anemia, most of us have during treatment. Yes, it can be alleviated some with other drugs, but a lot still remain anemica for a very long time. How does that affect us after treatment? I'm a layman, but I personally am concerned about the long-term affects of anemia on both mind and body. That said, if you have liver damage, go for the treatment -- today's combo treatments give us the best shot we ever had at a cure. It's a matter of risk and reward.

-- Jim

[scubadiver30]

Thanks a lot for you response. Like I said my Dr says he'sure that I'm 0/1 stage even without the biopsy. Little risky to say that right? Or can he tell just by my ecography and blood tests results? Regarding the Fibroscan I'm joining the trials also..It is not a definitive thing. My new doc hast the last word on it.
I know tx is hard, getting the medication I can get rid of the 2b but 50% chance of clearing 1b. So I wonder. Do i want to expose myself even if I'm not going to SVR (and I fell fine right now really). My doc says that the younger the better to respond but I'm quite confused really.
My coworkers and my boss would freak out if they knew and if I start to fail in the job. So maybe is better to wait a couple of years..Although he told most hepatologist in the world think IFN and RIV is the only way to go for at least in a decade.
Gracias Jim
scuba

[jmjm530]

What I said is that it's my opinion not to treat IF you're a stage 0. :)

But first, I'd be pretty darn sure if I was a stage or not. Talk to your doctor and find out the basis of his diagnosis. I'm guessing he gave you a Fibrotest. Other than a biopsy or Fibroscasn, I don't know any other way he can make that diagnosis. If he did give you a Fibrotest (blood marker test) and it indicated stage 0, then he should compare it to the Fibroscan test. Together, they give a better idea of your biopsy stage than either individually.

My gut feeling is that he's probably right (you're a stage 0) but if it was my liver I'd want to be sure to get all the information before I made any treatment decisions.

-- Jim

[sunspot]

Off topic but I can't help myself. One of the worlds best diving lights is made in Spain. It's named "Barbolight". I am a confirmed flashaholic, not a diver.

[scubadiver30]

Hi again, Kalio, Jim, Sunspot.
he didn't do a fibrotest. Only liver panel, hemogram, tyroids, glucose, antibodies amd a whole bunch of tests I can't remember plus 2 ecos. He's very good it seems (expensive though). Nothing like the judgemental one from the Social Security
He said he has seen enough HCV patients to know that I'm only 0/1 just out of my results. He seemed a bit skeptic about the fibroscan though (is too new to be reliable, he says)???. I'm going to have with another doctor. I'll post the results as soon as I get them. I wanna be 100% sure I can wait a couple of years
I guess here in Europe they don't do the biopsies as much as in the USA...
Thx to you

Sunspot: do u dive too?? :-)

[sunspot]

Not a diver. I belong to a <i>huge</i> flashlight forum, that's how I know about the Barbolight.
Best to you, Dana

[NYgirl]

Wow you must have the doctor with the xray vision!!!!!!!!  I wish I went to him instead of my doctor so I didn't have to have a biopsy at all!!!!   ;-)  (Just kidding you you know but being truthful here - how can he possibly know what stage/grade you are with no testing????)

I certainly and honestly consider my genotype (1a and 1b) and my biopsy as the deciding factors on treatment.

Since I was a 1 which is hardest and a 2/3 on my bx...it made the decision easy for me.  

I just don't understand how you are supposed to know what is going on without any real test?

I sort of worry about that.  I hope everything works out for you!

[mindylu]

Hi! I am brand new to this website. I have probably had hep c for 20 years. Had a biospy 15 months ago, my liver was a 0-1 -They said no need for inferon yet. I was itching all over for a week, (now it's gone away) maybe an allery? My doc took my blood tests, liver enzymes were fine, my viral load was 289,000. Is that low?

[mindylu]

Dear rockerforlife, Good luck & i hope the drug works for you. I know i'll end up having to take it too.

[johnisme]

Hi Rocker, The best of luck to you, is it the right thing to do?
Really only you can answer that one. But it does sound like you have a plan together.

Take care....John

[scubadiver30]

I think your VL is low. Everything under 2 million is. I'm 5 million :-(
Am I wrong guys?
saludos

[johnisme]

Hello and welcome, Yes thats a very low viral load, and i would agree with your doc. on waiting.... Please though remember we are not doctors here. But come on back as their's plenty of people here that are well informed and can help answer any questions...

The best of luck to ya...John

[mindylu]

So, what exactly can a few glasses of wine a week really hurt?

[mindylu]

Everything under 2 million is low?

[mindylu]

Saludos, At 5 million, do you have any symptoms? Are you on treatment?

[johnisme]

Guess that depends on what you consider the meaning of a few is, I use to consider a few beers was a 12 pac. :) NOT GOOD.. Here's a great site that will explain vl and about anything you care to know....

http://janis7hepc.com/

[jmjm530]

It is possible for a doctor experienced in Hep C to "ball park" your level of fibrosis using certain blood markers. Sort of like a home made Fibrotest. So it's very possible he's calling your stage O correctly. Markers often used are platelets, SGOT, SGPT and INR as well as others. For example, there's the simple calculator here: http://www.haltctrial.org/   Others use more markers. Info posted on this over at the Hepatitis C/HIV site.

That said, why not ask for a Fibrotest and correlate that with Fibroscan? A new study sugggests that the two together are quite accurate especially closer to both ends. Another med opinion is also an option.

-- Jim

[Tallblonde]

This board used to have a very staunch "pro-treatment" stance and I find it fascinating how radically that has changed.  Even though I'm someone who has personally opted to wait, I want to point out to you, Mindylu, and to other newbies, that it took me about a year to  make that difficult decision.

Mindylu, we have a relatively new poster here who has greatly influenced the thinking of a lot of other newbies. His mantra is:  If you're at Stage 0 or Stage 1, you can wait until better treatments come along.  Now his followers are repeating the same mantra.

Mindylu, I just want to tell you that it isn't that simple.  I'm quite concerned about that kind of blanket statement influencing the decisions of folks who have little or no liver damage. First of all, I'm afraid it will lull them into a false sense of security.  I picture someone logging on, reading that blanket statement, and then logging off and never giving their disease another thought.  Let's face it, a lot of people are lazy and not willing to dig deeper.

As I said above, I've chosen not to treat at this time.  However, there are many individualized variables that need to be considered -- such as age, weight, extrahepatic manifestations, and other health issues.  For example, although I'm a Stage 0-1, I would begin treatment immediately if I was over the age of 50, or if my symptoms were significantly affecting my quality of life, or if my overall health wasn't good and I was at risk for other chronic diseases (diabetes, cancer, etc.).  

I recommend that you become an HCV expert during the next several months.  Read everything you can.  Set up files.  Cut and paste comments from this board.  Give yourself at least 3-6 months to make an informed decision.  

Best wishes to you,
Susan

[scubadiver30]

Hi again. No At 5 million VL I'm not on tx yet, my doctor says I can wait a couple of years (not 10). He says he needs to find out wich genotype is contributing to the VL. If it is the 2b maybe I could get away with 24 weeks. I don't think so.
Symptoms? just a mild pain below the ribcage form time to time (right upper quadrant) but no fatigue nor porfiria or cryo or any other stuff. Is kind of weird aint it? In fact, I went to the doctor because I got high ALT in my annual checkup in the company. That's how I found out..I wasn't feeling bad at all. Since then no alcohol nor fatty foods nor smoking. Exercise 3 times a week and praying every nite
In fact, i'm grateful I found this forum with nice folks. I know I'll be able to finish the race with a little help from my webfriends. ;-)
salu2

[scubadiver30]

Thanks for your advice. I agree with you but I also agree with Jim. Not treating does not mean I'm going to go happy go lucky with my life again. I have read 3 books, and visited 2 specialist already (had many bloodtests in a 5 month period. In fact on monday i'm going to a 3rd specialist for a Fibroscan...I haven't gotten a biopsy because my doctors don't want to do it.
I'm in my 40's so I guess Im not experiencing extrahepatic symptoms just yet, but I'm also in the middle of my productive life. If I miss work I may not be able to prepare for my retirement..Jobless in Spain is as good as dead... Europe's work environment is not all that flexible (like the US & Canada), and if I can wait until i'm 50 to undergo tx. better still...Hope I won't regret these words

salu2
diver

JMJM thanks for the website. I knew I could count on you guys.

[mindylu]

Thank you all for writing me back. I'll keep you posted. I'm 49 now. I sorrta would like to take the drug & get it over with...

[scubadiver30]

I introduced my  values in the predicting formula in the HALT-C website and the result is 24%. So that would be 0 or 1?
Thanks Jim. You big, me small ;-)

[jmjm530]

That calculator just predicts chances of Cirrhosis and the poplation it's based on I believe has significant liver damage if I remember correctly. You might want to check this out. I only used this to point out that some very common markers are being used to predict liver damage. Do your numbers mean stage 0 or 1? Apparently your doctor things so but I wouldn't base any tx decisions on the calculator. I'd suggest researching studies more on Fibrotest/Fibroscan and see if you think you're comfortable to how they correlate with needle biopsy. If you are, then go take them and see how they compare to your doctor's dx and then come to a decision.

-- Jim

[Tallblonde]

Cool down Kalio.  I'm just sharing MY take on things.  I'm not making blanket statements about anyone's intelligence.  

I think my points are valid.  It's easy to see that many of the new posters are mimicking the same mantra as their leader.  Some are even adopting his idiosyncratic way of expressing himself.  It has changed the culture of this board, almost overnight, from the strong pro-treatment stance it had before he arrived on the scene.  

I would encourage them, and him, to avoid simplistic blanket statements about waiting to treat.  You never know who might be hurt by taking it too seriously.

Susan

[GoofyDad]

Yaaaawwwwnnn....

[Tallblonde]

Stay on that high road, man.  It's your humanitarian duty!

Susan

[2irish]

Here we go again....do we have to??

[Tallblonde]

You're right.  This board does NOT have a strong pro-treatment stance (anymore).  That's my point.  Thank you for reiterating it.

Susan

[Tallblonde]

You must not have gotten the memo.  We're not allow to criticize people for being condescending ;)

Susan

[Forseegood]

I think everyone on this thread has made some good points. I'm going out on a limb here, but I think it's great when many issues are talked about and debated about, and I personally think that if you do have the space to wait, you should consider it. I really hesitate to say this, because so many people are about to start tx, doing tx or finished with it, but I just know too many that have gotten diseases they never had before after finishing tx, if you go to Janis right now you'll see a poster there who just posted getting cancer after finishing treatment 6 months. She just posted. Janis has a much bigger pool of people so there might be a more indicative cross section, no one knows for sure on that one. Now maybe she was going to get the cancer anyway, who knows? And of course, I also know many, many people post treatment, who cleared and who didn't, who are perfectly fine now post treatment. It's always inspiring to hear who cleared and how they have such good lives now. Everyone is different.

My point is that the treatment itself "can" pose dangers itself, and we should all consider it very carefully if we are low liver damage candidates.

[Forseegood]

Oh yeah, personally, I think if you drink alcohol, at all, with this virus....you're taking too big a chance considering the circumstances...and for too little a payoff. Best concentrate on what veggies and good foods youll be eating, to do your liver some good. Just my take on it.

[2irish]

i've only ever heard my mother use the word lemming.  thank you for that, it really brings back memories.  I'm with you, Kalio!

[mistybean]

When I was first diagnosed my dr who is well known at Scripps told me straight-out:  you don't need a bio and you most likely are stage 0.  I did not believe him so I went to another doctor who did a bio.  I was stage 0/1.  The first doc was correct.  Anyway... I am a 2 genotype so I am on treatment now.  The new protocall with many doctors is to go ahead and treat all 2's regardless of stage.

[Forseegood]

Oh, maybe I should of stipulated that I was talking about geno 1's with low liver damage. And that means a low bx and pretty good labs. Glad that we can all be a bit more civil around here. I always thought that if you disagreed with someone, you posted as much, and why, and then either agreed to disagree or come around to the other's opinion, at least on some points. Then anybody reading the thread could make up their own mind about whatever issue it is. No big whup in my book. If I took it personally whenever someone didn't agree with me, I'd be eating the full contents of my refrigerator right now, he he he!

[mikesimon]

I agree that the overall tone of the board has changed but I don't attribute the change to one poster. I think the reason the tone has changed is the prospect of Vertex 950. It looms ahead like an oasis and I truly hope it is as good as it appears. Before the imminent prospect of protease inhibators there was interferon and ribavirin and that was all there was and all there appeared to be for as far as the judicious eye could see. I personally treated 3 times for a total of 3.5 years. I can say that with VX 950 possibly less than 4 years away I might have gone about things differently - I probably would have. But there were other promising drugs that died a pretty quick death so maybe our hopes are just that - hopes. Buy I feel that the prospect of a faster and easier and more effective treatment allows people to be much less serious and anxious and that is not to say that people aren't concerned becasue of course they are. But before these new drugs were seemingly in the near future the was Peg-intron and Pegasys and Ribavirin and Copegus and that was all there was. So, of course, the dominant theme was treat because there was nothing much to wait for. I think it's different now and if Vertex or one of the other protease inhibators gets to market soon that will be great. Mike

[honey11]

Yes I totally agree that many are considering and then reconsidering with Vertex around the corner and of course who can blame them.  We all know that pegasas/pegintron is not so easy and we definitely can drop the many sides that come with it lol  But yes,,,I definitely don't feel one person can change the tone of the board.  People are doing more and more research and considering their options which is great!

[cuteus]

¡Bienvenido amigo(a?) de Espana!
¡Saludos desde Nueva York!
I meant to say hi to you before but the thread was closed.  I would not make a decission to wait based on blood tests and scans, I have read that they miss some of the moderate (in between) liver damage and you do not want to be in the dark as to the true nature of your damage. You want to enjoy that retirement in decent health.
Insist on that biopsy, especially if you have two genotypes. I had normal readingsin all my bloodwork, every time. And my biopsy was staged at 1, grade 2.  Mild damage, but damage nevertheless and no one can predict how fast YOUR disease will progress. A few of new members here posted a stage 0 on the first biopsy and 3 yrs later they were at 3! That would scare me! If you are going to wait, you need better monitoring of the liver.  Blood tests is not enough. On the watch and wait:http://www.prnewswire.co.uk/cgi/news/release?id=143867
My decission to treat came from this board good points for tx and against tx. My age(53 at the time), extrahepatic symptoms for yrs (http://www.hcvadvocate.org/news/NewsUpdates_PDF/2.2_Conference_Reports/zevin.pdf), the fact that no one can tell when hcv will take off and do more damage(http://www.medscape.com/viewarticle/450088), good insurance and good working environment.  I did over 72 wks of tx, I was a 1a, and was able to work every day.
You don't know how tx will affect you, until you start. Roche has a SVR predictor that you can try on yourself and see what your chances are at svr. Many drs start with a 56% chance, not the 40 - 50% mentioned before and other pre tx factors place some at 60% shot at SVR.
The meds bring you a set of conditions that, for the most part, are short term. The majority do not experience long term effects, but those that do, will spend time online complaining and warning new people just starting to research.  It is best to have a complete neurological and cardiac eval prior to tx.
In your case, maybe you can at least get rid of bug #2. Viral load fluctuates  so much that if one geno goes, the other might have more room for improvement, so I am not sure why the Dr would even try to find which geno is causing what VL.
Try to get a biopsy before making a final decission.
BTW, I completed my tx, a yr ago, and ESTOY LIBRE DEL VIRUS!

[scubadiver30]

Hola again.
thanks to all for your comments. I will surely insist on a biopsy and/or Fibrotest ASAP because of the double whammy I got. I hope I'll get at least one cause I'm relying on Social Security.
BTW I never wanted to raise a debate between old members of the forum. I was just speaking my mind (and maybe my english is not all the good so that leads to confussion)...Anyway, I've always been hesitant with all kinds of strong txs because my father in law died while on chymiotherapy. Maybe it was the natural course of his illness but I always felt the doctors were pushing the envelope with him. It's sad to always be against modern medicine and then to be totally dependent on it.
The tough part is that my wife & my mother think I'm making a big deal out of this (because they see me healthy, no jaundice or extra hepatic symptoms) they do think I'm hipocondriac because i'm always checkin the forum and reviewing data on the internet. They said that many people have lived long lives with hepC before IFN & RIV, and they never needed those strong meds. So my guess is that most doctors over here are like that. They won' treat unless they see the sickness in your face. And the iberian catholic mindset can kick in somehow (thinking I did this to myself and maybe I deserve it) that kind of thing.It is an issue.
Anyhow, that that won't kill me will make me stronger (i hope)

Hola Cuteus: Cómo estás? espero que bien. I'm happy to know you're SVR. Hope to be where you are soon. BTW, you scared me with the 0 to 3 stage jump in 3 years thing. I really thought this illness advanced slowly.
In sum, thanks to all and God bless you. This is what I call support. Internet es lo mejor

[go-girl]

Hi, wish you the best in your trial, I am also starting in one in Vancouver this Monday with schering/redipen but they don't supply Eprex for anemia, and we can't get it under extended medical either is what the pharmacist told us. What study are you in & what tx? You are lucky in that respect, go for it and good luck. You have nothing to lose by what I understand being stage 4, I am 3, not much time to waste either, I wish I had time in my favor. Don't we all!!!!!!!!! am anxius to get your response, thanx

[friole]

Scuba... I am glad you are getting the Fibroscan.  I hear you on the need to work.  I first found out I had C antibodies in 1993 (when I was 46) and there was not much information available and the treatment was not kind.  I had 3 teenagers and had way too much going on with life to think about treatment so i "shelved" it. Now at age 57 I have decided to treat.  Fortuanatly, after 35 years of infection, I was still at Stage 1, Grade 1. I still need to work, and that would be the deal breaker for me.  So far (I am at shot 17 of 48) I am able to handle it, but I have a desk job,not a physical job.  

One thing struck me odd about what your doctor said -- that he wanted to find out which geno contributed to your high VL and maybe you could treat for 24 weeks.  I have heard.. probably read on this board... that you always treat for the time of the longest genotype - meaning the 48 weeks.  

Mindylu--  Welcome to the board.  As I just said, I decided to treat at 1/1 and am glad of it.  At 49 I think you are at a good age to treat and clear.  Amount of damage is not the only factor to consider when you decide to treat.  For kicks last night when I went to the pharmacy to pick up my prescriptions (which with my co pay cost $30 each)I asked her to look up the retail price.  Retail on the Peg - $1575; retail on the Copeg - $1575; and retail on the Procrit -$2219.  That is $5300 of drugs for $90.  So insurance coverage was a major factor for me.  I didn't want to wait any longer either.  Good luck on your decison

Rocker and Go Go -- good luck with the beginning of your trials in Canada.  Go go- it sure would be nice if you could change trials so you could get the other medications for the blood if needed.

friole

[honey11]

Yep Scuba,,,when and if you decide to tx,,,you would have to go for the big gusto to kill the virus.  You would treat the 1 with standard 48 weeks if you clear the virus by 12 week mark. Seems like at one time,,,,,there was someone else that had a 2 and 1 geno also but can't remember details.  Hope they will chime in also here,,,