BIOP RESULTS

[STUSEE]

I AM 54 HAD BIOPSY 15YEARS AGO WHICH SHOWED MINIMAL PORTAL FIBROSIS. JUST HAD ANOTHER AND SHOWED STAGE 1 WITH MINIMAL FIBROSIS.DOCTOR RECOMENDS 6 MONTH FOLLOW UPS WITH BIOPSY EVERY 5 YEARS. I HAVE THE VIRUS AT LEAST 35 YEARS. DO YOU GUYS THINK ITS A BETTER IDEA TO TAKE THE MEDS.

[friole]

I don't have any answers, but my biopsy reads about the same, and I need to make the same decision - treat now or wait until the next biopsy.  Thing is (I am 57) we are not getting any younger and the treatment, so they say, is harder as you age.  To me, financial matters factor in.  Right now I am covered by a good insurance plan.  What if the liver goes down hill after I am on medicare and there is no coverage for medications?  From biopsy to biopsy (mostly I see recommended every 3 years, not 5) is a long time.  For you, you won't make a decision again until age 59.

Since there is such minimum damage (and I am assuming no side affects) now it is easy to say wait.  But since the progression is not steady, that does not mean the next 15 years will be the same (slow progress).  

Are you healthy in other regards?  I am considering that too.  Since I have good  health now, it may be better to treat - maybe better odds.

I would like to see your arguments for and against treatment.  Everything I hear influences my decision.

[cougareyes]

I'm a 44 yr old male at stage 3. Just took shot #2 last nite. If I were at stage 1, I would follow what your Dr. has recommended. Don't drink and take care of your liver and you should be fine. You could always do another bx in 3 yrs, and hopefully there will be kinder treatment options in the future.

[jmjm530]

Frijole makes some good points about not getting younger and financial considerations.

That said (assuming you're a genotype 1) I'd follow your doctor's advice, except maybe get another biopsy in 3 years if you're a man and 3-5 years if you're a woman. (Male gender is a risk factor for fibrosis progression.)

Geno 1 is the hardest to treat and you really have to weigh the odds of clearing (about 40%) against treatment side effects both temporary and possibly permanent. I'm week 19 of 72 and believe me this is not a fun thing.

If you're a Geno 2, I could see more reasons to treat now since you're chance of clearing is much higher (80%) and the treatment is about half as long.

As reveniere says, better treatment is probably 3-5 years down the road.

[Moeymitt]

I am in the same boat, had 2nd bx last week with stage 1, grade 2. VL 1mil. (bx 3 years apart) doc said same thing, wait, I am 1a and need tx for 1 year and he said if it were him he would not do it!!  I was all prepared to start tx in Sept. Now, I am back on the roller coster and just going to live life and forget about it for now, it has been such a mental battle, day after day. .  Female, 50. He told be that after the first bx until my enzymes went up 6 months ago. Then, he said do tx. NOw, a different story.

[cuteus]

again you must also consider that a chronic infection like HCV is not only affecting your liver. a biopsy will show you how the liver is progressing but not how the other organs are faring:
http://janis7hepc.com/Related%20Conditions.htm
http://www.jcnmd.com/pt/re/jclnnmd/abstract.00131402-200303000-00002.htm;jsessionid=CTitHdZj2dtwn0Z5y34bOJhFdT8XfvqYW9xeDqX5EXFU8AGifYa3!-579262570!-949856031!9001!-1
these conditions might make it harder to clear the virus from the serum, and the longer they stay with you the more likely they might do irreversible damage to tissue like thyroid, joints, etc.
Good insurance is definetely a plus, since Medicare does not have a good prescription plan yet and the younger and healthier you are the easier it is to handle the sides. Getting rid of the pesky invader is definetely a welcome thing,; to finally call yourself non infectious, priceless.
Not everyone gets severe side effects on tx, most people don't, according to my GI. And most do not get severe long term effects. we can get long term effects just from having long term hcv infection, as seen in above articles.
Age is not on our side once we reach 50, you never know what complication can halt the onoing trials.
you could be hcv free by the time the new meds finally come out?.

[cbee]

This is my own experience.  I have had a horrible time on tx.  I am 47, female, geno 2.  Grade 1, Stage 2.  Have done 26 weeks (there is some confusion about my 12 week sensitive PCR).  Am doing only 2 more shots.  Knowing what I know now, I would wait.  Unfortunately, there are those who can't and I understand that.  You've got to treat if the alternative is much worse.  This has been debilating both physically and mentally.  I've lost 50% of hair, look like a walking zombie, am obsessive/compulisive, have lost the ability to sleep or think straight and fly off the handle with little provocation.  I could not work full time after 3 months and now am on disability.  I shoot Procit and Neupogen along with the peg and riba.  Yes, my doctors have prescribed various things for the sides but they don't help much.  Truly my quality of life sucks.

The worst part is the lack of compassion and sympathy.  You really find out who your friends are when you go through something like this. I guess people understand chemo with cancer but they don't get it with the HCV.  I've done this alone (my poor 13 year old son has had to deal with so much this past 6 1/2 months), no family and friends dropping like flies.  

It's true that a lot of people don't have a response that has been as bad as mine.  But we are out there.  I've started to tell you all about it several times but didn't want to scare people.  I guess censoring myself wasn't fair to me or others since we are supposed to be able to speak truthfully here.  I hope to return to the pretty woman I used to be.  I hope my brain slows down and I will be able to sleep again.  I hope I will enjoy things again, and most of all to be the loving mom I used to be.  Time will tell.  

Thanks for listening.

-cbee

[Lynda1954]

I haven't even had the bx yet - I'm confident I will have a bleeding problem.  Hope to use the fibrosure & maybe ct. I am reasonably strong, but need to improve odds (weight, no alcohol for 6 months).  What I really want is the vx-950 tx. I'm on Kaiser which I'm soooo glad I got on. Expensive, but in our case, worth it. I don't want to wait until I fall apart (liver or otherwise) or experience some random hit from life.

So - to wait for vx-950 (try for a clinical trial) & risk further deterioration or endure tx on currently available meds (very scary). I'll just keep learning as much as I can over the coming months as I decide. All input is welcome.

[jmjm530]

Sorry about your tx problems and it's important you're telling it like it is.

Your story is is like many, many others. Sure, some people fly through treatment with little or no problems. But many like yourself (and myself) end up in what can accurately be described sometimes as a living hell. And there are all too many posts about people still having side effects when treatment is over.

So it gets personal with me when I hear some people say "treat, treat, treat" regardless of genotype, liver damage, etc., etc.

Like most here, I don't believe in a cookie cutter approach. I believe in *individualized* treatment that can include double-dosing, infergen, extended treatment, weight-based riba, early Procrit and Neupogen intervention, etc.

But individualized treatment also means some people probably shouldn't treat. Especially those genotype 1a's and 1b's with little or no liver damage. Especially today when for the first time newer and better treatments are realistically only a few years away.

We all want to get rid of the virus, but trying to get rid of it "at all costs" IMO is based more on emotion than good medicine.

[cuteus]

bottom line is; if you want to rid yourself of the virus and wonder what today's meds will do to you, there is no way to tell which one will you be until you try them. I went in with the thought that if it truly got bad and endanger major organs, I would stop, because I could. Each day you want to quit, and each day you realize you can do it one more time. It is a day to day affair. It is not easy, if it was, everyone would jump on the bandwagon.
Keep in mind that when you read people having side effects after tx, it is not always because they appeared during tx. Many of us had blossoming conditions in various stages of development due to hcv, many that we did not know were there until the meds enhanced them. If you truly want the full pic, ask them if they had these before tx.
It is a risk one way or another if tx is optional, you could live with hcv with no extrahepatic symptoms or you could develop cirrhosis or ESLD in only 3 yrs like at least two people have posted here. You roll the dice.

[jmjm530]

"...if you want to rid yourself of the virus and wonder what today's meds will do to you, there is no way to tell which one will you be until you try them..."
______________

Cuteus,

To an extent I agree with you here, as one possible strategy. In other words, try the meds, as you may be one of the lucky ones not only with very tolerable sx but someone who clears the virus early.

Where we disagree, is that I wouldn't encourage type 1's with very little liver damage to endure treatment if things started getting too rough. Nor would I urge them into extended treatment, or more agressive dosing should they not have an early viral response. In fact, if a stage 0 or 1 didn't have an EVR by week #4, they might consider quitting at that point.

To me, the more agressive strategies, above, make more sense for those with severe liver damage or cirrhosis. Stage 0's and 1's have time to wait. 3's and 4's may not.

Having said this, I applaud your personal attitude toward treatment and the determination and strength you obviously have.

In the end, to treat or not to treat is a very personal decision with no right or wrong answers.

[cuteus]

TY jm, yes, that is our main disagreement, as I see your point in that one also. It is just that when you invest any time, money and effort in the tx, the person has gone in with full knowledge of what the meds are about after weighing things, has emotionally committed, and are asking for ways to continue coping and tips on how to accomplish their ultimate goal, I can not bring myself to tell them, throw all that effort away and quit.  If someone would have told me that I would have shown true riba/latin/perimenopause rage!!

[Honey15637]

To treat or not to treat is a very personal decision and this is done by so many pros and cons either way and then deciding which is best for you.  The only problem with,,,if you are stage 0 or 1 and also what is the age here we are discussing because that plays a big factor but,,,,We can't honestly say how fast that stage may move,,,could be years and years and then again,,,maybe only couple years.  Once you reach 3 or 4,,,,then you are cutting your odds on the tx and just what if,,,,there is no new drugs less sides in the horizon in say,,,,the next 3 to 5 years.  Its a very hard decision for all of us to make and how lucky do you feel?  We could flip a coin,,,lol

[cougareyes]

Thank you for being honest about your treatment experiences. I do hope you guys find some release and peace. I just started, shot #2 sun nite, and I'm having a horible time. I weigh 175 and taking 180mcg peg, 1200mg riba.
The thing about these post is sometimes people change there stories. I've have read some posters acting as tx is a piece off cake, then reading one of their post from a year ago and find a completely different story.
I understand you cbee by not wanting to scare anyone, and I know everyone reacts diferently to tx. My Dr. warned me that I would probably feel alot worse when I started tx. There are so many variables that go into deciding to treat and how a person will fair on treatment.
For me I know tx is the right thing, I was already getting pretty sick before tx. I wish everyone here well, this board has helped me tremendously.  
thanks for listening

[cuteus]

a big difference seems to be which peg you are on, Pegasys is less of a hell from what I read.
This forum helped me stay the course, and the vicoprofen for aches. Those were my lifelines...and of course, my beautiful daughter.
don't be afraid to ask your dr for effective pain meds, you need to feel close to being a human. and don't let the anemia disable you, many drs wait until you are near transfusion status before intervening.
it will be over soon and then you will not remember much of what this year was like. That is why some sound like they had a breeze, We forgot the actual hell we endured. The fog is a blessing in this case!
Honestly, I can not remember how bad I felt then, my hair is back, my skin does not look ashen, Summer is not killing me,,,,I guess I do remember some stuff, lol.
You be well

[jmjm530]

Cuteus...Point well taken about tx compliance following attitude. It's not a simple dynamic and I rarely would tell someone on tx to throw in the towel. Quite the opposite! On the other hand, if someone came to that road themself -- and they were a stage 1 or 0 -- I don't think I'd cheer lead for them to continue quite as hard.

So just to make it perfectly clear, anyone (regardless of stage) on treatment (or who has completed treatment) has nothing but 100 per cent of my support, admiration and prayers. My comments are simply directed to people who are asking our opinions on making treatment decisions. In the end, hopefully people will make the choice right for them.

Honey... You're right, it's not a simple decision and age does play a factor although if someone has remained at stage 0 or 1 for thirty years, the chances of shooting to stage 4 within the next three years is low. But like you suggest, that doesn't mean it couldn't happen. You gotta roll your own dice.

The other thing about age is your general health. I wish I started treatment a year earlier when my health was excellent. Two weeks before I started treatment I came down with a bad case of reflux and now I'm probably stuck with tx and reflux for the next 52 weeks.

[Moeymitt]

just a quick post here, I will come back later, be careful about doing the Fibrosure (blood test they are using in place of bx) I had both, one bx 3.5 years ago and one bx last week, along with The blood test one month ago. BX read the same Grade 2, stage 1, Fibrosure read score of 75, Fibrosis, possible Cirosis. When I get the paper work from Doctor I will post word for word. I took the Fibrosure test to 3 different GI's they all said not a good diagnostic tool.

[cuteus]

I hope so, they have been saying something similar for the last 10 yrs. Hopefully nothing will halt the trials. There is no guarantee that the side effects of those meds will be easier, from what some of  those in the new trials have shared here.
good luck

[Califia]

I applaud your honesty, you two:  it's so important that we enter this treatment with our eyes wide open about all the risks and benefits.  It ain't no picnic, that's for sure, and we have no clue as to what the long-term effects on an aging body might be.   Some of us had no choice, and were grateful that with the development of pegylated interferons, "success" rates (for geno 1's) actually increased from about 10% to 45%.   But that's just some of us--and if I were in my late 50s, had weathered the dramatic hormonal shifts of menopause without an escalation of the disease course _and_ had minimal liver damage--I would choose not to treat with pharmaceuticals.  But that's a personal decision, and I don't mean to offer any grand ideological position on this.  I am merely speaking from my own experience.  Treatment is very hard, both physically and mentally.   I am always amused by doctors who report that very few of their patients have had "serious" side effects.  If one does, like my friend M. who suffered a heart attack two days after taking her last shot, there's inevitably a lot of mumbling about proving causality and maybe yes, maybe no, and sure, there's no reason not to treat again.   (And she will, as soon as she can take a year off from work.)  Short of a heart attack, or blindness, there are merely flu-like symptoms--isn't that the party line?   Those of us who have been through it know better.

[STUSEE]

thanks for the opinions spoke to my internist and he says 5 years from now will have other options with alot of oral antiviral drugs without the devasting sides.

[friole]

Six to one in favor of not treating if you have little liver damage and Genotype 1 - that is how I am reading this post.  

Cuteus, I respect your position.  Everything you say has merit.  It is, as you point out, the only way to kill the dreaded virus. And I am sure you are right, that everyone does not have bad sides.

Revenire, Jmjm530, Cbee, Califia - you speak out of the wisdom of experience.  Many of you  have changed your thinking over time. The pain and suffering you have indured in order to be free of the virus is immense. I think you truly don't want to see others suffer as you did unless it is necessary -- and I agree with you -- that at a Stage/Grade 3 treatment is a must.

Moeymitt, Stusee -- looks like you have made your decisions not to treat, based on your doctors' advice.  Moeymitt - you are the triathalete, I believe, and therefore keep yourself in excellent shape. You decision is solid.  Stusee - I don't know.  Defer to the doctor, I guess.

As for me, I have until 9:00 tomorrow to make my decision. So I am going to be hanging in here for the next hour or so reading posts and trying to decide.  

I am 1a, biopsy grade 1, stage 1 ( I did get the pathologist to grade it and got the results today).  I am leaning towards treating but if I do not reach EVR at 12 weeks, discontinuing.  I think I owe it to myself to try to clear this disease, but not at the expense of my livelihood.  Brain fog could wipe me out.  I could lose my tax practice (I am a CPA) if I can't think. The other sx I have read about on these posts that concerns me is the bone loss around the teeth.  I have an appointment tomorrow right before my appointment at 9:00 with the GI with a dentist who was going to do a dental implant.  (Besides the fact that I have just spent my implant money on a biopsy...) I am thinking of postponing the implant. I can't see paying the big bucks for that only to have the bone disintegrate around it.

One of the big arguments  I can make for treating is focus. I am afraid if I don't take action now, I will ignore it and I already did that in 1993 when I first found out I had hep c antibodies. Only by luck did my liver stay fairly healthy.

I may change my mind by morning...

[Honey15637]

Friole,,,I am for treating,,,,given age.  That would be my own personal decision.  From day 1,,,I always wanted the virus gone! Like you said,,,it works on other things beside the liver.  I can't count the people that have bone loss and so many other factors.  Not only that,,,but I did not want to take the chance of being worried of infecting anyone else.  I know Tony had stated that he was a 1 on biopsy and progressed in either 2 or 3 years to a 3.  Many do stay at 1 and then the older they get,,,all the sudden seems like one year,,,they are shocked because there is a jump a stage or 2.  Of course,,,,I may feel different if I had not cleared or had some lasting sides.  The tx can do that or enhance problems you are having now.  I'm sure you have done much reading and know the risks involved either way.  Best of Luck to a very tough decision!

[friole]

Glad you responded.  I couldn't decide what you thought in the post.  The part about infecting others is kind of the "swing vote" for me.  In 1977 I had a blood transfusion in a surgery.  I was so grateful because I think the blood saved my life that for several years after that I was a regular blood donor at our two local hospital/blood banks. I am not even sure why I quit - probably got too busy.  I believe I contacted hep c in the late 60's early 70's thru IVDU............. so lord knows how many people I have infected.   The tests to detect hep c weren't developed until 1993 I think. I certainly didn't know about it. I thought I was being a good citizen. As I read on these forums of those infected by BT, I feel just awful.  So, I think I owe it to them as well as me to clear this.

[cuteus]

I beg to differ with jm(what a surprise, ;-}) in the assessment of effectiveness. had I done that, I would not be SVR today.
If you are not having a terrible, unbearable time and endangering organs, bone marrow, etc. Stay the course even if no 2 log drop by week 12, even.  I had a 1.82 log drop at wk 12. I wanted to quit so many times, but I wanted HCV gone for good more. My counts were decent, thyroid holding, needed Procrit at month 3, and pain meds, but I was able to finish 72 shots and the bugger is either still hiding in fear or GONE for good.

Again, had I follow an advise like JM's, I would not be at this point today. I would still be learnig to live with HCV and staring at the little  orange labels in my medical charts that alerted people of my status. After my yrs PCR, I am going to ask them to remove them!
I am warning all considering tx that you will feel like quitting many times, I don't think anybody I met did not get that thought.

[jmjm530]

I mentioned this earlier in a different context but it may be of interest in your decision.

If you do decide to treat, consider using 4 weeks as your goal for EVR instead of 12. If you EVR within 4 weeks, continue treatment. No EVR, take a break and wait for better stuff down the road.

Given your lack of fibrosis, an EVR within 4 weeks would probably give you a 70-80% chance of SVR, versus a 40-50% chance of SVR if you EVR at 12 weeks. This changes the risk/reward equation significantly.

I like the way you're weighing all the pro's and con's and then factoring them into your own personal situation. In the end, once you have all the facts, it becomes a personal decision from the gut. Good luck!

[Moeymitt]

Good Luck with your decision,I still am going back and forth with my own and admire your process. I am getting so mentally tired that after my last bx have decided to take 2 months off from thinking about it. I will again, in fall reconsider. I understand each persons stance on the topic, I partly wish my doctor would have said now is the time to tx but he said its such a personal decision. I will say a prayer for you and I admire your courage.

[cuteus]

good thinking, take a break. BTW my doc said the same thing; "it is up to you", grrr, I wished she would have told me what to do.
My next question was if she could tell me if the stage one grade 2 was a recent development and now progressing or if it had happened 20 yrs ago and still holding. Of course she could not answer that one, and having birthdays was not helping...so I had to try.
you have the advantage of two biopsies showing similar results.
gl in your decission process.

[friole]

Well, I did it. I picked up my prescription this morning.  I am going to give it my best shot (pun intended).

Pegasys 180 mg in prefilled syringes, Copegus 1200mg per day.  (Ha - I know you can guess my weght ........but I didn't miss it by much.  Maybe the more Riba  the better, eh?)

Cuteus and JmJm - Not sure yet as to what I will do if I don't clear by 12.  I meant to ask him today for a 4 week pcr - but I asked him so much, I forgot that.  I think he will do it.  I will have another apt with him after shot 4.  I am pretty healthy overall so maybe I will clear by 4.  If I don't clear by 12 I think it will depend on the sides.  


Moey.  Good luck on your decision.  This last two months have been hell.  I actually feel more at peace today since the dx two months ago.

[jmjm530]

Friole... It must be a real relief to finally make that tough decision. All the best with your treatment!

Week #4 numbers can be very helpful for a multitude of tx decisions down the road. My doc gave me weekly PCR's until I cleared at week 6. And, yes, the more riba the better. Just make sure your doc agrees to intervene with Procrit should you start getting anemic.

Cuteus...Nevermind. :-)

[friole]

Thanks.  As for the Procrit or Neupogen, my doc says he refers to a Hemotologist for that.  He said his experience is that if you wait until you need one, you can't get it (long waits) so I am supposed to make an appointment now.  I will have CBC's done every two weeks and those results (I think) will be sent to the Hemotologist. The pharmacy I use does not keep those meds on hand, but I guess they can get it within a day.

I took my Rx for the Peg and Copeg to the pharmacy yesterday.  If it comes in, I will take the first injection tonight.  If not, I guess I will wait until next Friday.
kathy