Treatment - What made you decide??

[Wildewoman]

I was diagnosed over 8 years ago & have done nothing since that time. Now - they are talking about treatment.

What is the deciding factor for treatment? The liver biopsy? Your blood test? How you feel?

I feel fine - in fact - I feel great!! My biopsy back in 2001 was a 1-1. My genotype is 1a.

So what is the "ah ha" moment that told you it was time for treatment? Is there ever a too late for treatment?

Many thanks!!

[Wildewoman]

" Fortunately it is 24 - 72 weeks of treatment that you are facing, depending on your genotype and how rapidly you respond to the medicine. "

Thanks!! That makes me feel much better. If my biopsy comes back good (1-1) then I may consider waiting for this new treatment that is expected soon.

I see my GI guy 5 days after the biopsy - so hopefully the results will be in by then. I think I could handle 24 WEEKS of treatment & so could my job & my life.

[duekah]

Thank you for all of the comments on this thread , I still need to learn alot and understand what all of the little terms you refer too, UND, SVR etc but I can get the jist of what is going on. I am 1B 2B, untreated 1-1 Liver status I think, undiscovered until 4 years ago Doc recomended no TX just watch for now. But I have had it for 25 yrs and waiting for the timebomb to go off . I rely on my Primary Care MD to keep tabs on my liver and I have found out that you NEED to get a copy of the blood tests (AST, ALT) yourself (they don't care) and monitor it yourself , I get a blood test every 6 mos.and if  Numbers get too high I will get the specialist referal.
     I know myself , I could not do 24 or 72 months TX and I am scared ******** to have to face that, I have spent way too many years right next to ground zero watching all of my friends deal with the treatment issues (before I knew I was one of them ) and seeing them go thru more agony than the AIDs sufferers . I am just trying to stretch this thing out long enough so there will be something else besides these crude , brutal , primative Interferon type drugs when this bomb goes off . Next biopsy in a year or sooner if liver numbers look bad . Thats as honest as I can get .

                                        Godpeed to all !

[annieCinMD]

I'm banking on your biopsy coming back not too much different from your last one. The disease usually doesn't progress fast at all, especially if you've been living pretty clean since your diagnosis. You can easily make 24 weeks, trust me. Hold off for the new drugs if you're still grade 1 or even 2.

[jdwithhcv]

The treatment seems very scary - 24 - 72 months of treatment?? I don't think I could do that.
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I don't think any of us could do that.  Fortunately it is 24 - 72 weeks of treatment that you are facing, depending on your genotype and how rapidly you respond to the medicine.

I did not feel sick or look sick, yet my liver was at stage 2/3  and grade 2/3 when my doctor noticed liver damage on a CT scan.  My GI doc, who has known me for years, assured me that I should treat immediately.  He didn't consider it a close call at all.  I'm glad I did it, although it was very difficult.  Now I get to keep my liver and I don't have Hep C hanging over me any more.

I'll be on the lookout for your bx results.  Whatever you decide, good luck.  Keep reading here and post your questions.  This is a good place to get support.

jd

[Wildewoman]

WOW!! So much information!! I am having the liver biopsy on Friday - when they remove my gall bladder.

To be honest - after they told me I had hep C all those years ago - I never thought about it again. I am married - they tested my husband - he didn't have it & we went on with our merry lives. We never even thought about it.

In fact, if my primary care provider (that I have had for years) hadn't gone on a 2 year sabbatical - and I got a new doctor - who I LOVE by the way - I wouldn't be thinking about it now. My previous provider never even asked about it when I went in for my annual physicals.

Then, I see my new doctor in May & for the last 2 months it has been appointment after appointment - procedure after procedure & now surgery & a liver biopsy.

When I met with the GI specialist - he said if the biopsy showed 4-4 then he would suggest the treatment. If a 1-1 still - wait. For me, the effects of the treatment are just too much for me right now. Being sick, missing work, depression, etc. - it is just overwhelming.

I don't feel sick - I don't look sick & my blood work (liver function tests) are "normal".

The treatment seems very scary - 24 - 72 months of treatment?? I don't think I could do that.

I'll let you know what the biopsy says.

Thanks so much!!

[epiphiny]

I hated knowing that there were nasty invaders in my body wreaking havoc with all my organs, my energy levels and my sense of well being.  It affected me mentally, emotionally and physically and I just wanted to get rid of it.  I felt unclean.

I particularly hated the thought that my blood, if it came into direct contact with anyone else's blood, had the potential to infect them and change the course of their lives in the way mine had been changed.

And I REALLY wanted to know what my life could be like with out having an alien invader sapping all my energy and I wanted the chance to live without the constant threat sitting over me.

I treated twice to get rid of it and I even tho it was very difficult at times I don't regret a moment of it.  I cannot properly explain the wonderful sense of freedom I now have now that I know I am UND and I haven't known such a sense of happiness, well being and energy since I was in my early 20's.

[alagirl]

Well, for me, I knew exactly when I was infected.  And I was an acute.  I was geno 1b, so treating acutely gave me such a leg up in terms of achieving SVR with that genotype that it was never even really a question (for anyone, me, my family, my doctors) whether or not I would treat right away.  I began treatment within 3 mos of being infected.

I often wonder how I would have reframed things in my mind had I already been a chronic hcv patient when I found out I had hcv.  I think I still would have tx'ed almost immediately.  The way I look at it, you have risk of long term effects due to tx, period.  Interferon is going to be around at least another few years.  I would prob rather just deal with the effects of the tx drugs instead of waiting for the hcv to cause problems and dealing with more damage from the hcv as well as the effects of the tx drugs.  I have always viewed hcv as causing inflammatory changes in many systems, rather than just causing liver damage, so I think that would enter my decision making.

[Rockerforlife]

Treatment - What made you decide??


I dont like little creatues swimming around in my bllod stream so i decided to remove them

[Tippyclubb]

I've had hep c for 30 or more years but just found out two years ago.  Stage 1, grade 2 and I was adamant about not treating and let nature take its course.  However, I received a call from the research coordinator about a possible 6 months tx, and NO placebo trial with Telaprevir.  I jumped on that opportunity.  All meds were free and I did receive all three drugs.  How could I pass that up?  That was the only reason I treated.  I am a little over three weeks done with tx and UND.

[charm27]

I have had HCV probably 25 years..I dont know..I found out in 1992 thru a blood test and did nothing. I decided to go for a liver biopsy in 2007 and I was a stage 2.
My viral load was 75 million..which doctor wasnt concerned about. However being 54
and probably the best Id ever be healthwise I decided myself to give it a try.
One doctor said wait, the other said treat. So I thought about it and went with my gut.
Wasnt easy, actually very hard for me..Im left with SEVERE pain in knees, and hands which is very painful. The good news is I was Undetectable at 6 months and I feel it was so worth the 55 weeks I went thru. I received alot of support and just got through it! IF I had to do again I would.........I thank goodness we have that option to tx this dragon!
I wanted so much to try and save my liver and not wait.

Charm- WIshing you the very best of luck in your future...........

[lapis]

I was diagnosed through routine blood donation in 96, had a bx which was not scored with numbers at the time (mild inflammation, no scarring).  We discussed tx and I was very concerned about the depression side because I'd had some major depression in those years.  So I waited.  Had liver enzymes checked regularly but did nothing else.

I never felt sick, and liver enzymes were never elevated above high normal range.  I had some gastrointestinal issues but did not relate them to HCV (as I do now).  What was hard for me was knowing I had this disease.  As a nurse, I treated some very sick people with cirrhosis and end stage liver disease, and I never wanted that to happen to me.

Fast forward to 2007.  Moved to a new area, saw hepatologist at large teaching hospital.  Repeat bx, 2/2.  Progression of liver damage.  He recommended tx, I said I was not ready to do it at that time, too much going on in my life (teaching, training, self-employed, 2-3 jobs at once).

In Oct. 2008 I went back for routine visit, having quit my teaching job and slowed down on the training.  I was told, "we usually recommend tx when you're 2/2."  They mentioned there were clinical trials with Telaprevir ongoing, and there were spaces available in those trials.  I told them that I was interested now, and they interviewed me that day for the study.  By the end of October I'd already finished my first week of tx.  Completed tx early April, now UND at 13 wks post tx.

A huge benefit of the trial for me was only treating for 24 wks (though I did not know I'd get into the 24-wk group when I started).  As a geno 1b, I would've needed at least 48 wks on SOC, but the study drug cuts the tx time in half.

Also, I was not getting any younger (well over 50), and I thought tx would only get harder as I got older.  Deciding to tx is such a personal decision.  It was invaluable to have all my resources in place:  supportive family and friends, flexible work hours, health insurance, regular massage and accupuncture.  All those things made a difference for me.

Those are the things that helped me decide.  Best of luck with your decisions.  

[RCM829]

My alpha-fetoprotein (AFP) levels momentarily spiked to 20.4.
Since I had always previously tested more in the 4-6 range (which I believe is the high-end of normal), my doctors brought me in for an ultrasound and then a CT scan.
Not knowing better, I was convinced I was developing cancer.
Of course, the results showed "no abnormalities" and I later learned (partially through this forum) that Hep C patients sometimes have these spikes and it usually is no cause for alarm.
But I'd had it. I marched into my doctors office and said "retreat me now."
And I am so glad I did.
Good luck to you whatever you decide.

Portann- sounds like you've got a great son...you must be very proud!

[annieCinMD]

I'm not quite sure what it was, but I remember after leaving the doctor's office after agreeing to participate in the study, I was thinking "I can't believe I said 'yes'". It was probably because he told me I had a good chance of SVR because of being white, female, little to no damage. I also haven't hit mensopause yet and remember hearing some correlation of having a harder time treating after as opposed to before. Might just be the younger vs older thing. Younger people also have a higher success rate and probably an easier time. The biopsy is the key to whether you have a choice. I am a 1a like you, and thank God, am treating with a protease inhibitor. These will most likely allow the shorter treatments that geno 2s and 3s get. I will have to pull myself out of the study early because of the arm I got put in. I also went in with hopes of being one of the lucky ones that wouldn't get many side effects. Well, I got most of them, including some that may not go away. I think a year or longer on interferon is pushing the envelope on introducing permanent issues, so I am sincerely hoping you get a good biopsy report and can wait for the protease inhibitors. I forgot to mention that I cleared within 2 weeks of starting the protease inhibitor so I really feel they are going to really boost my chances of beating this. If you don't get a good biopsy report and have to treat now, try to find a trial for a protease inhibitor or polymerase inhibitor(these are the next big thing they are working on). A trial is the only way you will get these new drugs right now. Good luck.

[zazza]

Guess I should be polite and answer the original question. I was diagnosed in 1995, moved to a different town in 2004 where the doctors were more aggressive with treatment. I was still reluctant to treat however, until I was offered to treat only 24 weeks if I was undetectable at week 4 since I was geno 1a with a low baseline viral load. After researching, I figured my chance of being UND at week 4 was about 65%.

Of course I was not UND until week 15, so I had to treat 72 weeks. But I am very happy I did, as I am now virus free! Treatment was bad, but not as bad as I thought it would be. And one major reason for that was the support I got here on the forum.

I agree with the others. Access your liver status with a biopsy, and then you can determine whether or not you can wait for the new protease inhibitors which will reduce the duration of treatment necessary.

Get rid of the bug sooner or later is my opinion!

[zazza]

I can just hear your son saying "I told you so!" when you get your SVR!

[portann]

I also was guilt-tripped into treating. As a 1A with little progression after forty years, my hepatologist thought I should wait but my son (older than twelve!) phoned every Sunday and persistently turned the topic to treating.

He laid on the guilt by saying that's all he wanted for his birthday gift. His attitude was a 50% chance of SVR was 'good'. Hmmmmm............

[newleaf09]

Forgot to say that I felt pretty good, too, when I got the biopsy results of cirrhosis.  You can feel pretty good right up until you start going into liver failure.  I would encourage you to get another biopsy, just to be sure you are staying at the same place (1/1) and not progressing without you feeling it.  That's what makes it such a frightening disease: no symtoms until it's too late to do anything about it.

[desrt]

HCA:
"It is now believed that a majority will develop cirrhosis during their sixties."

'Belief' is a wonderful thing. The majority of Americans don't 'believe' in the process of natural selection. Until I see more reputable studies confirming the above statement, I will continue to 'believe' that most(80%) chronically infected HCV patients will die of something besides HCC or cirrhosis.

Wildewoman:
My 12 year old daughter guilt tripped me into treating.
At that time (2002) it seemed there were a lot of people starting to have health problems after being infected for the length of time I'd been infected (about 30 years). Since that time, I've found that the more I learn, the less I'm sure of. Not that HCA's statement, the 80% figure, or my 'belief' of 7 years ago are mutually exclusive. It's just I've come to feel QOL considerations - balancing the potential problems caused by large doses of alpha IFN against the problems of coexisting with the virus - need to weighed carefully.

[newleaf09]

Had acute hep c in 1971. They didn't know what it was so after the attack was over, I just forgot about it.  Last fall high ALT/AST started the doctor dance.  When biopsy results showed cirrhosis (I was 3/4) and I read about decompensated cirrhosis I jumped in as fast as I could.  Diagnosed positive hep c in Sept, doctor dancewith biopsy Nov. 4, started in new drug trial Nov. 14, finished June 1, now 7 wks. post TX, with the 4 wk. post-TX PCR (UD for undetectable virus) under my belt.

Your biopsy is EVERYTHING. Tells you how much damage you already have and as long as you have the virus, it's uncommon for it to get better, just gets worse.  Very high AST/ALT also indicate that damage is being done right then and there and should make you want to do something.

[Marte313]

I was itching like hell cause of the bilrubin levels and didn't feel so good about being yellow. My father is a doctor so he got me an appointment with a specialist. They told me it was my choise if I wanted to treat. I decided to just jump right into it and rather do the consern about quitting if it became bad. Now I have 3 weeks left of tx =)

Good luck with the decision!!

[HCA]

Disease progression speeds up as one gets older.It is now believed that a majority will develop cirrhosis during their sixties.
Eight years is a long time between biopsies.you will be fortunate if there has not been fibrosis progression.
You should talk to your doctor about treating using a protease inhibitor which will be a possibilty sometime in 2011