To Treat or Not To Treat

[mauilady]

I'm sure this has come up before, but I can't find it: I'd like to know what made all of you opt for the treatment (interferon/ribavarin)?  I went to the HCV class yesterday, which was put on by a hepatologist, who seemed to really know his stuff.  (too bad he can't be my primary care md... )  He basically said that there is really no way of knowing exactly where the virus stands; that only 5% of the people infected will at some point in their lives end up with a full-blown case of hep.  If alcohol is stopped (and he couldn't stress the importance of this enough), and one leads a healthy lifestyle by eating right and getting lots of good and aerobic exercise, and taking milk thistle, the chances of living a long and healthy life are significantly greater.

To be honest, I really don't feel like subjecting myself to a year of misery, which would also entail driving to town (a place I prefer to avoid; it's an hour away... and totally nuts) TWICE a week.  The cost factor didn't even come up.  So I would rather take that five percent chance and continue doing what I'm doing, as I feel totally fine now.

Comments, please!!  :-)

[orphanedhawk]

I found out a year ago that I have hep C and cirrhosis. I am going to do the tx because of the state of my liver. My husband was tested and although he has Hep C, all his blood work and his ultrasound showed no damage. His liver is normal while mine is a mess. If you are healthy in all other ways, why not try taking good care of your liver, and wait and see? That's what I would do , anyway.

[Carolengy]

What made me go through this Riba-Interferon treatment? tell you something, I was contaminated with HCV, 14 Yrs. ago when I became eclamptic after giving birth, somewhat I got the 2A patogen (if my mind serves me well, don't know any more), during all these years I've no symptoms at all, so It was difficult to decide to jump into this treatment, I was aware of all side effects, and I asked my Dr. what to do? he Quote:"Think as if you're walking with a granade, it could explode, or it couldn't" So I guess is entirele up to you, tell you what though, is not a Pic-nic, but for me besides the fact that I am such a chicken with physical pain and so, I'm surviving it, Oh! tell you something else, I went undetected on my 8th. week, I still did 6 more weeks, hopefully stays that way.
So good Luck whith whatever you decide.

[SoCal Lady]

Do you mean that you only did 14 weeks of treatment?  That's a pretty short treatment time....

[cuteus]

well, if you decide not to treat out of fear (of tx), why not fear hcv and treat? it is not just   a liver disease, it affects many other organs, including the brain.  Fear the tx, and fear HCV, which one you fear the most determines your decission.  the new drugs many keep touting, will be used with interferon, so the only thing you might be avoiding is riba and the anemia that comes with it.  If your thyroid is going to go on tx, it can do so with shorter or longer tx.  There was a study that compared the side effects of 48 wks vs 72, and they were not considerably higher in the latter, so, it is possible that nothing will happen to you with the current tx.  It looks as if about two thirds are not worse off post tx.  Chances are that you will be ok post tx.  Read the inserts, go to Roche or Schering's site and read them, and the percentage that suffer them.

[ladybug52]

I have been trying to decide whether to treat now or wait and I got a call from the P.A. at the hep c clinic and she advised me to wait since I'm starting a new job.  Her reasoning was based on: my liver biopsy, stage 1 fibrosis grade 2 disease activity, labs, AST 22 ALT 30, and genotype-2. I plan on monitoring my labs and if the enzymes go up I will start a plan of treatment. I think this is a very personal issue but make sure you have ALL the info you need so that you can make an informed choice. Labs, biopsy and genotype all are important factors to consider before making a decision.    
Statistics mean nothing when it's YOUR liver that you are counting on. Good luck with whatever you decide.

[bobbyullc]

get a biopsy...many people have died from untreated hepc but never anyone that was stage 1 or 2 or 3....i am with jim and you...why waste a year of your life when in 2 or 3 years new drugs will be so much better and shorter...that will happen...i waited 9 years and am not dead yet...if you ahve fair readings and no symtoms a year or two wait will NOT kill anyone...
bobby

the success rate now is only 45% and the cost is about $40,000 if no insurance...

[mauilady]

Apparently, the way Kaiser is doing it on Maui is: interferon is given once a week, on Friday, then on Monday a lab is done, to keep monitoring the meds.  I could be mistaken, but that's what I understood.  Ribavarin is still on a daily basis... I'll double-check, though.

[GrandOak]

As a Geno 1A stage 4 VL 72,000,000 who was diagnosed 10/31/05 and delivered by His grace and mercy from alcoholism on 05/05/05 having 2 sons (15 & 9) and a daughter (12) with a wife of 23 yrs now struggling with depression and trying to find the right AD meds, it more or less was a no brainer for me, and not for myself but for my family.

Facing the reality of perhaps needing a transplantation however is fast becoming a much bigger decision with which I have found myself struggling with recently as tx is thought by doc to not be working for me.  It hit especially hard when a young girl here spent her 10th birthday in the ICU waiting for a life saving liver transplant for a disease she has struggled with all her natural life just a few weeks ago.

The thought of someone so young, who is innocent of doing anything to place her in that position, fighting to possible live a natural life by obtaining a liver while someone like myself, who is most likely responsible for youthful indiscretions which placed me in the position I find myself, might one day deprive someone like her from recieving life if I were to need and accept a transplant is something I no longer think I could ethically or morally do!!!

If nothing else, this insidious disease has forced me to address face on the reality of my own mortality and develop a radically different appreciation for life and what is of importance in it.

[NYgirl]

SoCalLady said:  I only see my doc or NP every few months.

Ditto. I hardly EVER see them and really have no reason to!

[avidreader]

I waited forever and forever to treat and in hindsight wish I hadn't waited quite so long (even though I don't know yet if I have acheieved SVR.) I finally decided to treat because the quality of my life had slowly deteriorated and I had all kinds of symptoms that I'm guessing now were directly related to having the virus for 30+ years. I began treatment when I was 54, finished when I was 55 (2 months ago) and right now feel better then I have felt in a decade. I was a stage 2/grade 2 but that wasn't my motivator for treatment--I was tired of feeling like sh!t. You have to weigh a lot of personal factors/professional opinions/econmomic issues etc. Good luck-take your time making up your mind. You always have more time then you think!

[SoCal Lady]

Re: The thought of someone so young, who is innocent of doing anything to place her in that position, fighting to possible live a natural life by obtaining a liver while someone like myself, who is most likely responsible for youthful indiscretions which placed me in the position I find myself, might one day deprive someone like her from recieving life if I were to need and accept a transplant is something I no longer think I could ethically or morally do!!!

I admire the altruism reflected in your final sentence, though I'm not sure I agree with your conclusion.  You have a family, and they certainly deserve to have their father around as long as possible....

[motheroffour]

GrandOak, I think your family would have very different feelings than you do about your perceived right or lack of right and your future.  Life is about what you do the next day just as much if not more as it is about what you did the day before.

[SoCal Lady]

I just started feeling VERY tired mid-morning, and had a sense that I had to do whatever it took to improve my health.  I also found out I am a genotype 2 (24 week treatment time), so I wasn't faced with the prospect of losing a year to treatment.

Have you had a biopsy?  Do you know your genotype?  Why would you have to go to town twice a week for treatment?  The meds can be delivered to your home.  I only see my doc or NP every few months.

[Upbeat]

I unlike most on this board decided against treatment. I could give you many reasons for and against. Don't be driven by the fear factor. Make your choice based on the info you research and what you deem is right for you.  You will hear alot about getting a biopsy and that is the true measure of your Hep progression. Thats not really true.  Most people without hep-c will show damage to the liver from a host of reasons having nothen to do with hep-c.  The Doc you are seeing is your best sourse of info. Ask question. Lots of questions.

                                                             Ron

[Algernon]

I finished TX 17 weeks ago.  Clear so far.

I waited 10 years (had HepC 32 years) prior to TX.  

I was stage 2 and GT3.  If I had it to do over again, I'd wait for better drugs.  Felt GREAT before TX.  I am not nearly as healthy now as I was before TX.  Hopefully, that will change in the future but that's where I am now.

If it ain't broke, don't fix it.

[SoCal Lady]

I think most of us do our own injections.  Does Kaiser have to do them for you at their clinic?  I'm surprised by the weekly labs....

[wanpow]

I too am sick and tired of being sick and tired,, and depressed.  I tried treatment 2 yrs ago for 4 months and had to quit because there were too many stressors in my life. The doc strongly suggested that I wait until there is less stress and I don't know when that'll possibly be. I am currently undergoing therapy with a psychologist and diagnosed with complicated post traumatic stress syndrome. As far as I know I contracted Hep C over 25 yrs ago. I do have all the symptoms and signs but these symptoms overlap with my mental diagnosis so it is difficult for me to make the distinction between the two. One thing I do know however is I am not looking forward to treatment and am hoping i can put it off indefinitely...it was not a good experience the first time. Yet I hate living like this.....wanda

[friole]

I sat on that fence for 12 years too. Time wasn't right, teenage kids, building my career, drugs were bad, etc etc etc.  As I approached 60 (will be 59 in a couple of months)my concerns shifted to -- How great will my retirement be? All the money in the world does not buy health.  Without health retirement will not be much fun and I have worked hard all my life and want to play and travel.

My symptoms were non-existent except for always being tired after 5:30pm.  My biopsy reflected Grade 1, Stage 1.  Sure, I could have waited, but for what?  Sure, I would probably never die of cirrhosis or liver cancer, but did I really think this disease was not going to impact my life?

The hepatitis virus does not only damage the liver.  It inflames the lungs, it is suspected of causeing a lot of auto-immune issues too.

My insurance was great, by kids were out of the house, my careeer was good and I could afford to slough a year (still worked, just not at 100%) and I had a supportive husband.  So now was the time.

frijole
1.52 million IU/mL pre treatment, 1a, treated 56 weeks, and so far so good (clear so far)

[l-horn]

" The thought of someone so young, who is innocent of doing anything to place her in that position, fighting to possible live a natural life by obtaining a liver while someone like myself, who is most likely responsible for youthful indiscretions which placed me in the position I find myself, might one day deprive someone like her from recieving life if I were to need and accept a transplant is something I no longer think I could ethically or morally do!!! "

I can definately understand that BUT....let the people who sort that stuff out, sort that stuff out. One has to assume they know what they're doing. I'm sure children move to the 'top of the list'. Besides, it's also a matter of compatibility. Typical alchy ( trust me, I know for I be one too...) always trying to do other peoples thinking for them. You do what YOU have to do and let them do what THEY do, which is decide who gets livers and who doesn't. ( If that time ever comes....)

Good luck !!

[lauraisstrongerthenHCV]

I finally began treatment b/c I ran out of all my excuses not to.  I used to blame it on school and taking care of my kids and not having time to be sick and sooo many more...then one day I realized that I wasnt going to have medical assistance much longer and that if I wanted to treat it had to be now.  (but I had started it 2 times before but quit on the second dose becasue I was not readys and my labs were crazy)  but this time I went in and said I would give it 100%...  Anyway my first shot was the worse I had a fever for a couple of hours and couldnt sleep but it was not too bad and the other shots (now up to 12) I didnt feel a thing!!!!! I just take it at night pop a tylenol and go to sleep...I wake up feeling fine!!! I am of course tired b/c my labs are low but I dont have any major sides that bother me too much.  I guess what I am trying to say that the sides are different for everyone and if you really want to treat I would give it a shot!!!  If it is too bad then you could always stop.  I think that if you go in thinking the worse then you usually come out a little suprised at the fact that it wasnt that bad at all...BTW although treatment is 24-48 weeks the doctor will test your viral load at week 4 and you can usually tell from that point if it is working or not...I guess I am just trying to say why not give it a try and at four weeks see where you stand!!!!  It is beatable....I am 1b and at 4 weeks I was Undetectable!!!!  I didnt have anymore virus in my blood!!  That is very empowering news and I hope that you give it a chance so that maybe you can get news like that.  Good luck

[NYgirl]

your biopsy is the clear indicator on whether or not you have significant liver disease and that makes the decision easier.

While liver damage with hep c CAN be minimal there is no way of ever knowing how fast it might progress one day if the virus were to become extremely active.

At first I thought I was stage 2 and I decided DEFINITELY to treat and then I found out I was a 3 and was very glad I had already started!

I didn't want to take a chance on liver damage progressing and also I was worried somehow someway my kids would end up getting it from me.  Although there is not much of a chance there IS a chance and it drove me CRAZY.

Plus I just didn't like the idea of having a disease and knew I'd do anything to get rid of it.

But I had significant damage so it turned out I really had to.

Have the biopsy then it will help you with your decisions.

[52TELE]

Your standing at that crossroads the everyone of us have stood at before. Too many people have died as a result of untreated HCV to not take it seriously . They say that only a small percentage of infected people end up in stage 4 and beyond Liver disease , but I have personally seen what it does to a person and their family to have to go through a Liver transplant. You dont want to deal with those problems at that age. I felt like the time to deal with it was now and I would probably do it again. Good luck.

[jmjm530]

I'm going to re-phrase my second sentence to "f my biopsy didn't show stage 3, I'd still be waiting".

I took out the "better drugs" part because in my case I waited for many years and didn't even know about "better" drugs like Vertex. Some people with Hep C may never need to treat with any drugs as it's a slow moving disease. Best to see one or two good hepatologists (liver specialists) for evaluation and to discuss your individual case.

[jordie47]

My Husband and two daughters.
Jordie47