What do you think?

[IwillBeatHCV]

Hello everyone,
If you read my last posting, you recall I am HCV pos, geno 1,VL about 2K, biopsy grade 3/stage2. I have been HCV positive for about 25 years. I am putting on a strong face with my nickname, but after reading many posts, I am having second thoughts about starting treatment. I do not have any symptoms, never felt better in my life, and I don't smoke or drink so I feel just perfect these days. Why should I start treatment and start to feel like hell for 1 year with out any guarantees? And possibly losing my thyroid. What if I just wait for a new treatment that has less side affects? I asked my doctor about how many good years I have left if I don't ever have treatment but he can't answer that. I am no doctor, but I think I could have 5-10 years left. What if I just enjoy my last few good years to the fullest?

[IwillBeatHCV]

By the way, I am 42 years old...

[genedog]

do you think your family would like to put you in the ground? you have to think about it 48 weeks for a chance to grow old with my wife anyday i would do tx bing it on. live life to the fullest with your family, think about benging lying in the hospital with esld dying and thinking i could have changed this outcome,  just a dogs point of view

[walk]

its a big questions that I cant answer..... My husband will be starting is treatment this Friday. I'm scared but at the same time a have hope. We have 3 kids 9-7 and 5 year old. Same genotype then you. He took the desision for himself. He want to do everything that he can to try to be as long as possible with us. But there no garantie on this treatment. What if something goes wrong....... I'm scared and love him deeply but also know that I cant live with what if..... because if it does work I will have win precious time with my husband and if it doesnt well God is in control and he knows better. We are beleiver and know that we will meet again.
Will you be healthy enough if you wait longer? or a transplant will be the only option? Do you want to live only for that long or do you want to take a chance? I cant take a decision for yourself and the doctor are not to helphul. Take your decision when you can think clearly. Ask people who care for you. Take as much information as you can. And I'm sure there is people here who will be welling to give you advise better then mine :))
Take care and I hope you the best (we are 31 years old)
Sorry english is my second language.

[genedog]

benging?

[Califia]

The only problem with that logic is that you won't be "enjoying" your last 5 to 10 years--you'll be dealing with cirrhosis.   You can't  be casual when your fibrosis has advanced to Stage 3, and any doctor worth his salt would persuade you to treat immediately.   True,  nobody can predict the exact rate of progression.  But speaking bluntly, one HCV-infected person to another, you simply don't have time to wait.    Let me ask you this:  if you were diagnosed with cancer, would you choose not to treat because you're afraid of going through chemotherapy?   My guess is that you would bite the bullet and do what you have to do.

My friend,  I have just had one of those days you fear so much and I'm here to tell you that it's not the end of the world.   Treatment can be rough, but so is the virus it's designed to eradicate.   Because you're lucky enough now to feel as if you're in the prime of health, the fact of your infection must seem more than a little abstract.   But it's real, and it's not going to go away on its own.    

Just think where the human race would be if women chose to avoid childbirth because of the pain and sacrifice involved!  Believe me, you can get through treatment.   At your youthful age, you'll  probably  get through it with flying colors.  Please don't let fear get in your way.

[rifleman]

Roger Daltry once sang "hope I die before I grow old."  I bet now he's saying "hope I grow old before I die."
One thing to consider is that if you do not have treatment and are lucky enough to get a transplant, the virus will attack the new liver at an increased rate b/c of the anti-rejection drugs you will be taking.  That's what I hear anyway.
I haven't started tx yet, but will in less than a month.  I have known I was infected for over 10 years.  It wears on you after awhile, the wondering about what's going on.
In the end, you have to make the decision yourself.
DJL

[genedog]

1 more thing how many of you had a high vl i keep seeing 1&2 million i was 11million

[IwillBeatHCV]

Actually my VL is 2 million, not 2k...

[LvdByGod!]

are you willing to exchange the possibility for a full life just for 5 more years? i'm trying to understand this...you are thinking about exchanging your life for a thyroid? ok ok i may be missing something kiddo...

you are stage 3 this is as close to cirhosis as you can get...you really need to edjucate yourself on what end stage liver disease is like...it will make the side effects from treatment like childs play...please do a search on it...it is horrible...and once you get into cirhosis and begin to panic and think of treating then you may not be able to reverse the cirhosis...with fibrosis there is at least a good chance of some reversal of damage...

but it's your decision i can tell you treatment is very hard so you must go into it with a fighter attitude...but at least your suffering while you are helping your liver and not dieing from your liver...think about it! you got one shot to do this right!

[Laika]

Wow...I can't believe you'd just be happy with 5-10 yrs left and you're only 42!  I'm 58 years old (liver damage stage 2) and 12 wks into treatment...another 12 to go (I'm 2b).  I make sure my thyroid gets tested every time my blood is drawn.  If I lose it, I lose it...lots of people in my family are on thyroid hormone, including a sister who had to "kill" her thyroid.  So, I could lose the thyroid whether or not I treat, as could anyone.  You lose your thyroid?...it's just another one of those things in life that requires a person to be brave....(why so many?)

I feel like I have plenty to live for, like to be active and don't want hepC stealing that away if I can help it.  I hope to go on living a quality life until a tree falls on my head or whatever.

Laika

[Tallblonde]

I'm one of the few posters here who has actually chosen to postpone treatment and I think you're absolutely CRAZY if you don't treat now.  It's ridiculous to say that you're willing to die in 5 or 10 years to avoid one year of discomfort now.  Hello?  Does that really make any sense to you?

If you're going to postpone treatment, you're going to need a much better justification than that.  But at Stage 2, I can't think of any compelling reasons for you to wait.  Unfortunately, you don't have the luxury of waiting.  Some of us may have the luxury, but you're not one of them.  Sorry.  

You can do this.  Heck, if you're willing to die, then at least die trying to save yourself.

Susan

[snook_man]

Your looking at the situation just like I did. But hey, I'm 27 years old and stage 3. My Dr told me 10 years and I'd need a transplant..10 years is nothing!! I don't want a new liver, I wanna fight for mine! I wanna see my grandkids, hell...See my kids!
Treatment is not as bad as everyone fears.. Yeah, its a roller coaster and your gonna have your moments, but the question is whether or not you wanna live... Whether or not you wanna fight for your life, or role over and die. You gonna feel comfortable those last few years suffering from ESLD looking back and KNOWING that there was something YOU could have done to prevent it?
I'm on week 30, tommorrow will be shot 31. I've worked every single day except one, that I can thank my wife for a nice GI bug that damn near killed me.. Yuuuccckk!
And 10 years? Do a search on google.. Some studies show the median time between stage progression at as little as 18 months. Do you honestly think if you do nothing, that the time you have left will be enjoyable? Do a search, all the motivation one should EVER need!

[genedog]

i missed your gi bug sorry to hear about that 31 dam 35 for buddy

[IwillBeatHCV]

I have to thank all of you for your comments and I also have to apologize. I know all of you are going through tx or have done tx and have had tough moments and I suppose you don't need some one like me to sound so negative. I hope you can understand where I am coming from. I know my posting doesn't sound very logical. I am just very apprehensive and I am just hoping for the strengh and courage that all of you have. I hope start tx in a few weeks, as the study coordinator/nurse is waiting for my go ahead. I do want to take some sort of vacation first because this may be the last time I will feel good for a while. Thank you all again.

[IwillBeatHCV]

I am stage 2 not stage 3...

[Honey15637]

Yep,,,I agree with everyone here because once you are at the end stage,,,,there is no return.  I just finished 52 weeks and its not a picnic but then again,,,its definitely not something that I wouldn't do because of the discomfort.  I had already decided if I relapsed,,,I would tx again.  And Tony here is on his 3rd round so you know it couldn't be all that bad.  Everyone here on tx does feel yucky some days and of course this is a good place to complain because the whole board understands.  I know for me,,,,I want to live alot longer then 5 to 10 years,,,theres just too much out there still to enjoy.  I hope you reconsider and you will have lots of people supporting you!

Hey Dog!  8.5 mil before starting tx and SVR so far.... so that is just a number.....

[genedog]

GRRRRRRRREAT JOB

[GreatBird]

I'm another person who has chosen not to treat at this time and in your shoes I would treat. Your age is in your favor and your stage/grade is not.

One thing you cannot predict is how you will feel on tx. You could feel worse than many of the people here, or you could feel better. It's a ride you can only experience by actually doing it. But, I think your liver deserves the effort.

Good luck.

[scruffy]

stage 2 damage would be a scary place to wait for something better to come along. I did 48 weeks and relapsed.If I were in your shoes I would do the treatment without a doubt. I'd rather chance 50/50 svr then 50/50 destroyed liver. Good luck to you. frank

[mikeymike2]

As previous threads will show I am a "watchfull waiting" person too - but I am fortunate enough to have minimal damage at last biopsy (another one due next year). If I have progressd to stage 2 I would be thinking very seriously about tx.
Tough call I know, but you never know, the sides may not be too bad for you - everybody is different and judging from this site some people get through it without too much grief.
Good luck whatever you chose.  We're all placing our different bets on this one.

[genedog]

how did you do on your pcr's on tx clear the whole way when did you relapse? high vl

[rifleman]

I hear where your coming from, man.  I spent many years trying to kill the virus with beer instead of tx.  6 months ago tx was the furthest thing from my mind.
I think what finally turned the tables for me is that I will be 40 in 6 months, and it is easier to heal when you are younger than when you are older, plain & simple.
My thought is that there will be drugs available withing the next 3 or 4 years (maybe sooner) that will be more effective with less side effects than now.  Ok, fine.  Ten years ago I did the research and the regimen was 3 shots of interferon a week, no ribavarin, and about a 20% success rate.  Not very promising.  Medicine has come a long way since then.  I am lucky b/c I only have to do 24 wks of tx, where you will have 48. You will make the right decision for yourself, but I would listen more to the grizzled veterans on this forum than to me.
DJL

[deano55]

I recently had biopsy That indicated mild chronic hepatitis (grade 2) Periportal fibrosis (stage 2) minimal fatty change. also, comment: mild portal inflammation is present with occasional piece-meal necrosis and spotty or scant lobular activity.  fine strands of connective tissue are associated with periporal fibrosis. trichrome and reticulin stains correlate well with the presence of perportal fibrosis. Iron stain and PAS-D stain are unremarkable. also says HCV RNA 17,400,000 iu/ml.  I think I recieved this hep around 20 years ago, I'm 39 now, but unsure. (my hep date that is) I'm seriously leaning towards treatment because of my stages and research I've done, however, my provider told me that they don't give treatment until stage 3.  I don't understand her reasoning. I guess she wants me to advance into cirohhis first. I'm new to this, is her reasoning correct, or would you get another opion and get treatment. I have symptoms of fatigue, have psriosis, and am taking prozac for depression. any advice will be very grateful thank you...i love this site God bless all. all that is whom believe in God I suppose. :)

[walk]

If you have mild inflamation (inflammation) stage 1 How long can it take to get to stage 3? because my doctor is telling us 20 years and I beleive its deferent for everyone no?

[Tallblonde]

Find another doctor as fast as you can.  It's absolutely insane to wait until you reach stage 3 to treat.  There are plenty of people on this forum who have found doctors that are willing to treat at Stage 1.  Find that kind of doctor.

By the way, most of us here have encountered one or two idiot doctors on the way to finding a competent one.  

Good luck.

Susan

[Tallblonde]

Now that's the $64,000 question!  I've read and heard that, on average, it takes roughly 20 years to get to Stage 4.  So if you divide that by 4, that's five years for each stage.  However, I don't think it's quite that neat and percise in most people. There's just no way of knowing how an individual might progress based on age, lifestyle, genetics, etc.

Susan

[cuteus]

If Susan is telling you to treat, you can not be hesitating.  She is the most pro "wait if you can, teacup in hand" forum member, and if she is tellling you that you do not belong in the waiting team, then you HAVE to listen. Seriously.

Chances are you will be the same as before tx a year from now, and most likely, virus free. This is what Dr. Bernstein, (my Dr) has to say at this site:
http://www.gastro-pro.org/index.html?http&&&www.gastro-pro.org/aga/hep-c/hep-c-08.html

"David Bernstein MD: The sustained viral response rates in patients treated with combination pegylated interferon plus ribavirin in genotype 1 disease have been reported to be 52 to 56%. In those patients infected with genotypes 2 and 3 disease, the sustained viral response rates to pegylated interferon plus ribavirin therapies have been reported to be 76 to 82%".

To me, those are not bad odds. almost 6 out of ten achieving SVR!

[walk]

Please be with us today is the BIG DAY my husband is starting is treatment in 4 hours and 30 min. With that Doctor who want money for is long day. By now he did'nt give him and other biosy (last one 3 years ago) and he doesnt want my husband to start is treatment. My husband is probably in stage 2 now after 4 years of waiting.... I hate our ignorance and that doctor. We should had change doctor before but he is "supose" to be the best in Canada. Is it to late to change after the treatment start?
I hope to be patient loving and caring enough through the year. I'm scared of the side effect if they are. I'm 5 feets and my husband 6" loll would not be good if he get aggressif or he think I'm a lobster "hallucination"
thank you to be there for us and sorry if I writte to much.

[cuteus]

I changed drs 4 wks into tx, and was planning to change again after 48 wks in order to find someone who would go along with extension. I had a total of 3 GIs after diagnosis(Dx).

[scruffy]

Good question dogman. At twelve weeks I was less then 600 but still detectable by a 2nd test. Did'nt get tested again till 24 weeks-was clear and clear at 48 weeks. Tested 5 months post and was 4 million vl. I've probably had hcv for 30 plus years and will be 57 yrs old in a week otherwise pretty healthy and old bad habits long gone. I did'nt get biopsy before treating. I should have gotten biopsy to make sure I needed to treat and I should have extended when I was'nt clear at 12 weeks. But mostly I should not have been a junkie and played with dangerous needles. Oh well, it ain't finished yet and neither am I! frank

[scruffy]

Also, I had a starting vl of 1.2mil. I would,nt put too much worry into the high vl you have. I would be more concerned about when you test clear. And treating long enough after clearing. frank

[snook_man]

Do some searches on the web.. All the new studies are suggesting treating patients at earlier stages of liver disease, as the SVR % are higher.. Why would you wait till stage 3, when the virus is harder to eradicate and the length of treatment would be preferabbly extended?
My Dr told me the same thing, and she was almost shell shocked over my staging.. She had just lectured me on how stage 3 and 4 was so bad, and how I would probably be a stage 1, if any.. Then she printed the results. Wonderful world of healthcare, go figure!!
Find another DR or go in with printed research articles. I went in with evidence on Pegysus, and demanded it. She was not going to allow me to take it, and told me how inferior it was to Scherrings peg. Tonight will be shot 31/48, with Pegysus!!

[garde]

Everyone is talking aboutr state 1, w, etc.  How do you interpret your liver biopsy and determine what stage you are in?   Or, did the doctor tell you?  I don't have my liver tests with me right now, but if I post my results can any of you interpret what state I am at?

[layla]

Bon chance to your husband. I hope all goes well. I was lucky at first and had no sides for months. I went though 3 docs before finding a good one. I highly recommend seeing  hepatologist even if it takes awhile to get an appointment. LL

[Tallblonde]

"Wait if you can, teacup in hand"

Hey, I like that!  I think I'll get a t-shirt made up with that slogan on it!

Susan

[layla]

Garde, yes post your results and I am sure people will help you out to understand the results.

Dean, get another doc right away! Try a hepatologist. Waiting until stage 3 is just plain nuts....

Iwill. I'm glad to see you have decided to tx. It is hard but it is not as bad as many other treatments. For example cancer chemo is much harder. Most of us work full time during tx. You see a lot of complaints here because this is where we come to complain. Waiting to start tx is very hard and casue a lot of anxiety. I wish you the best. LL

[cuteus]

I didn't realized it rhymed! lol.


garde; the pathologist stages and grades the biopsy sample, it will be written in the results to your dr. you should get copies of ALL bloodwork and tests for your own records.  when you get the results, you can bookmark  janis7hepc.com and read on biopsy interpretation.

[deano55]

Thanks for all your info about finding another dr. Call me naive or whatever, but I want to insist this docter who refuses to treat me does treat me. I see her this wed, and will have a load of info that contradicts what she says. (I somehow talked my way into another apt. with her.  This was tough to do I might add.  They are extremely rude and keep insisting I'm not understanding them.  Hmm...let's see, she tried to talk me out of getting a biopsy, and then after I received the biopsy, which the surgeon said I was good to stand up for myself and get it done.  The surgeon told me of course I would want to know the degree of damage done by hep c. I found out I'm stage 2 grade 2 etc, She prefers to wait until I'm stage 3. I still can't figure her reasoning, unlss it has to do with money. In fact, I'm on disability and receive medicare.  So maybe money has something to do with it, however, she insisted it doesn't, however, the dr's nurse, asked me, how am I going to pay for it. I told her I would make payments.  This certain clinic repeatedly contradicts themselves.  I just don't want to be on my death bed, knowing I shouldn't of listened to these folks, and tried treatment anyway. This is sure time consuming when you have the docters working against you.  Are there any good hep c docters in the portland vancouver area of washington oregon? Any advice is helpful and I will show it to the docters if I feel it's up to par. thanks I've rambled long enough sorry

[Hawk370]

Be happy you still have the oportunity for a cure.  The treatment is not fun but if you keep your eye on the light at the end of the tunnel it helps.  I just had my worst day sence starting my treatment.  After being on the treatment for 3 months my doctor just called and told me that the treatment wasn't working and that I should stop.  Beleive me when I say that not knowing what is coming next and how long is much worse than the treatment.

[scruffy]

That really sucks. My heart is with you and I hope you have minimal liver damage. The twelve weeks of tx may have helped your liver. Hang tough. frank

[LvdByGod!]

i am so sorry hawlk, i can sure relate to your disapointment as i had a problem clearing too...but, be sure you know exactly what your viral load now is and seek a second opinion if you want to continue treatment for awhile longer and test again...if this guy won't let you. also are you concidering infergen or a trial of some sort?...or will you rest from treatment for a bit?

i hope your dr will not just keep you waiting too long but will agressively seek help for you...esp if your liver damage is over a stage/grade 2. please let us know your plans...

i'm so sorry for your news, my prayers are with you,

sandi

[Tallblonde]

I guess it's fine that you want to try to persuade your current doctor to treat you, but if she still won't budge, you really do need to find someone else ASAP.  If money is an issue, you may want to look into participating in a clinical trial.  However, I think there are others on this forum who are on Medicare or Medicaid and they've somehow managed to get the treatment they need and deserve.

It's indeed sad that these doctors often seem like they're working against us, but that's the reality of it for many of us.  You have to constantly be on guard and on top of your game with them.  It won't serve any of us well to be a passive patient with a disease like this.  

By the way, always insist that they give you copies of your labs  and biospy reports.  Put everything in a file at home and keep good track of it.  In doing just that, I discovered that the specimen sample from my biopsy was less than half the size that's recommended for an accurate evaluation.  I would have never known that if I hadn't asked for the report.  My doctor sure as heck didn't voluntarily admit that he made a mistake!  But knowing that there was a problem, I insisted on getting a Fibrosure to see if the results were similar to the biopsy results.  They were, so I'm not worried about it anymore.

Good luck to you!
Susan

[cuteus]

what exactly did he mean by is not working? you did not get a 2 log drop? you did not drop at all? what? if your vl dropped considerably, even if not a 2 log drop, I would insist on continuing until clear and then go 36 to 40 wks from clearing.  Too  many drs are using these log numbers to stop tx and many drs do not.  Find out ASAP before you have been off tx for too long.

[Hawk370]

thanks for the kind thoughts.  When the nurse called she just told me that my viral count had actually gone up.  I have seen 3 different doctors sence I was diagnosed and unfortunately I have not kept all my numbers and counts from all my test.  I called the doctors last week and am currently gathering all my information so that I can be better informed on my next step.  I wish I had found this sight earlier.  There is so much good information here and lots of carring people.  I will try and stay in touch and let you know how things are going.

Thanks again

[garde]

Here are my liver biopsy results.  Hope someone can tell me what stage this is.  I don't remember the doctor telling me.

.Portal inflammation with focal piecemeal necrosis  - grade 2/4

.Lobuler inflammation with frocal necrosis - grade 2/4

.Portal fibrosis - grade 1/4

.Minimum steatosis

. No stainable iron

The liver biopsy shows that there are 3 portal tracts which are expanded by a limphocyctic infiltrate with focal extension to the limiting plate with piecemeal necrosis.  There is also a patchy lobular inflammation with associated necrosis.  Macrovescicular steatosis involves less than 5% of the parenchyma.  The trichrome stain highlighes enlarged and fibrotic portal tracts.  Therer is no stainable iron by Prussion blue stain.

There it is...hope someone can decipher.  

It's really hard to know if you should live your live thing about this every day, wondering when things will get bad, wondering if they will find a cure for those of us who have been not had success with interferon.  Is time on our side, or what?  

It's good to have someone to talk to.

garde

[cuteus]

you are a little too far down over here, you might want to post in a more recent thread.
if you check janis7hepc.com it explains the biopsy results.
but your biopsy report should say somewhere what stage it is, in addttion to the grade. If not, call the pathologist and ask them. He gets paid to interpret the results, make him earn his money.