6 hrs b4 tx decided to dropout?

[havhep26]

thanks for everyone's support i feel like i might have wasted your time, my time, and my doc's time but, I'm really not sure about tx so i've decided to bail out i was enrolled in hoffman-laroche study for males 200lbs+ and although it is free tx i am a 27 yr old new father who is seeking some real employment and i don't think i'm ready to deal w/ tx right now. I just hope i'm not making thge wrong decision, besides the fact that i feel my doc is only treating me for the benefits of the sdtudy and not really my health,  I don't even know what my dose will be because it's a blind study- the minimum is standard dosing pegasys 180/wk &copegasys 1200/daily where as the maximum is double the standard dose pegasys 360/week and copegasys 1600/daily needless to say it's a guessing game if i were to do tx i think i would want to do it as a regular regimen and not someone's study .... again i think... i am sooooo unsure of what to do.. i know that if i don't do it i probably wouyld have been fine during, of course i'll never know. I am biopsy 0 right now and i guess am waiting for newer meds.  But there are some people who live w/ hepc forever and never get sick right?  I'm also comparing it to tx my uncle and grandma went thru that killed them being radiation and chemo. they were not in optimal health at the time and  the meds killed them i don't want to be the rare case of worsened liver post tx. they say if it's not broke don't fix.. i KNOW i'm rambling and maybe not making much sense but i've had horrible anxiety for weeks about this day it's now 8:52am and i'm due to start at 1:00pm, i also asked my doc to put me on anti depressants prior and he has not.  Anyway i think i'm just looking for someone to tell me that it's ok not to treat right now.  Unless someone can tell me that i'm absolutely making the wrong decision i think i'm doing the right thing for now. thank you for hearing me out..sorry if i was all over the place. but this is some scary stuff one of the toughest decisions i've ever had to make which as u can tell i still have'nt made----MIKE

[tomofficial]

Do what is in your heart, don't just think about what's going on today will tx help you be there longer or your kids kids??
God Blass

[tomofficial]

FYI, I am 53 male week18 of 72 one son is a sophomore in college, youngest is at navy boot camp. Without tx I am looking at 10 years or so before I might encounter major liver issues. If tc works i should easily have 30 plus

[welderman]

Mike you'r young and if your liver biopsy is 0 I would wait I had hepc for 35 years. found out I had it last year. Have felt fine all those years my liver bx showed 2/2 and i'm a geno2b so my treatment is only 24 weeks. I'm 2/24 and have little or no sx from treatment yet. But if I was in your shoes I know I would wait for the better drugs to come along. you have time. good luck

Lynn

[bobbyullc]

good move. you have MANY years to wait until this poison is replaced with a much more reliable drug. i had it 39 years before i took tx and would have waited anouther 39 if i could have. for now put a bookmark in your calender for 5 years to check tx out again. if all the breakthroughs have happened you can decide then. meanwhile enjoy every day. you are very lucky.
bobby

[FlGuy]

You didn't waste anyone's time. Thoughful decisions require input and consideration.  Good luck.

[madbrad]

I don't know or I just don't remember what Genotype you are.....But I will say this..From what I've read it sounds more like your afraid...TX isn't fun  nor easy at any age......If you have insurance or VA or something Maybe delay would be ok...But if you don't and this is a FREE TRIAL....You have nothing to lose and 20-30-40 + years to gain....I you have a sizable VL. I'd be JUMPING ALL OVER THIS TX.......Your BX is 0 now, but that could change in the blink of an eye.....Especially if your geno type 1.

    I'd PRAY ABOUT IT....And act before you miss out.

[jmjm530]

I think not treating is a good decision for all the reasons you and others mentioned. As a number of folks suggested in your last post, you might make more productive use of the year going on a serious weight loss program, seeking professional help if necessary.

-- Jim

[jmjm530]

I'd like to take exception to biopsys stage "changing in a blink of an eye...especially if you're genotytpe 1".

First of all, no one can predict how fast or how slow liver damage will progress, but generally it's a very slow moving progress, especially if you are infected at a relatively young age, as is the case here.

Also, there is nothing inherent in genotype 1's that makes fibrosis progress faster. I believe if any genotype progresses faster it would be genotype 3, but not even 100 per cent sure on that.

I was a genotype 1 infected when I was 21 years old and it took 37 years to get to stage 3. In general, follow up biopsies are recommended every 3-5 years, but within 3 years there is a reasonable expectation that the Fibroscan device, now in FDA trial, will be available in many medical centers. With the non-invasive Fibroscan machine, monitoring of liver fibrosis will become more routine and in many cases may replace liver biopsy.

-- Jim

[chcnme]

Hi Mike.  You have wasted no one's time!   I think you have made the absolute right decision.  Had you been a dear friend or a family member,  I would have (based on the fact alone that you're grade 0)  tried to encourage you to NOT treat at this time.   The fact that this is a trial and you're grade 0 suggests to me it's not the right time for you and that it could be, indeed, a case of being more "right" for someone else.  Trials are not all about your best interest, and with Grade 0, age 27, a 17 month old child, and a family who has concerns, it would sure make me wonder.

On the AntiDs - sure, try one if you are depressed and want to try one, and if it helps - take it, but if it doesn't help - do not give up on yourself or the fact that one day you will feel better than you do now.   AntiD's are not for everyone. They help only about 30% of the patients who are treated with them for "depression".   Some AntiD's make people with Hep C feel a whole lot worse.  If you're suffering now from depression on account of this diagnosis (or if you were depressed before the diagnosis) and if you get under the care of a psychiatrist in addition to your GI doc, make sure that whatever that doc might suggest or prescribe is OK for your liver.   Your liver is grade 0 right now.  ZERO!   Be careful about any drugs (OTCs or RX'd) that you put into your system from here on out.  Exercise is always a good plan for depression, too.

And yes, many many people live with Hep C and never get sick.   Most, in fact, WON'T get sick.  You can do things to help yourself  be one of those who's in that category, such as - don't drink at ALL, don't do drugs, don't smoke dope  (it's been strongly linked to increased fibrosis in Hep C patients, i.e. it'll mess your liver up worse - it could take your wonderful grade 0 and make it jump to possibly grade 1 or 2),  don't smoke cigs (very bad for the liver, too),  get exercise,  stay well hydrated, get away from sugary foods, lose weight if you're overweight, eat right, watch out for OTC's and prescription drugs, don't take Tylenol if you don't have to, do not trust any claimed "herbal" cures you might see for "curing Hep C" (it' bullsh**).   If you're in recovery, watch out for a relapse.  This diagnosis alone and the stress you've been under, as you know, can make you want to use.  Just don't do it.  

I'm glad you've made the decision you have.   One day you might need to treat, but for now - you are fine.  Your liver is fine.  You are grade 0.  No damage.  Be OK with your decision and in fact celebrate it!  

Best of luck to you.  Best of luck with job hunting, too.  Working is always good medicine :)

[Tallahassee]

I think that I "received” my hep. C in 1991-92 during dental surgeries and plasma transfusion.  Biopsy of 1995 showed very minimal fibrosis. Biopsy of 2000 reported stage 2 fibrosis. Biopsy 2005 (by description) - beginning of the stage 3 (they mention about occasional septa connection between portal areas, something like that, this is equivalent to beginning of bridging).

I have gen. 1c.  The reason I described my history is let you know that you never can predict the speed of your decease progression!  And yes, never used alcohol (even before my diagnosis), never smoked, never used medications for any other medical conditions, etc.

Since 1995 I was on multiple Interferon & Infergen treatment ... these treatments reverse fibrosis for many people ... but except me.

I would like you to go back to your original tread and read out loud Ina's (Esenbein?)  point to show you the benefits of treating with lower fibrosis.  I loved her post and can echo her.

As I recall, your wife and mother were recommending not starting the treatment ... well, this is YOUR LIVER, and you are the one who needs to be concerned about your health!!!

Speaking of side effects - the younger you are the LESS side effects.  
In 1995 I was 26 years old; I went through trial of interferon with riba for 48 weeks as a breath! - only lost a little bet of hair, but did not need any rescue drugs, had a very demanding new job, studied for additional professional certifications (& passed them all from the first attempt, which was quiet unusual even between experienced engineers), exercised all the time and literally felt great!!

Now I'm 38 years old and on treatment for almost 2 years.... and I tell you it not a panacea... though I'm maintaining (barely) my demanding (thank God, mentally, not physically) job and keeping up (again, barely) with my obligations.

It is much easier to have SRV with lower fibrosis!!

If you are right now between jobs ... I think this is a good chance to have a free treatment and will give you more flexibility with your time.

If you will not like the treatment, you may stop it at any time - no questions asked.

Good luck, but think about YOUR liver & your future (like somebody mentioned about extending your life for your kids).

[madbrad]

This is just FOOD FOR THOUGHT.......You only have ONE CHANCE in life to make the best OUT OF YOUR LIFE.......NOT saying if you don't do this you'll miss out.......But this may be the opportunity to do just that,Make the best out of your life........
  You don't want 5 yrs down the road be saying "I wished I had done that"...
  God bless

[BThompson4]

Just the fact that an SOC company would design such a barbaric study (360 mcg pegasys and 1600 mg ribavirin) implies that the current interferon/ribavirin based treatments are not effective for large people.  360 mcg over 48 weeks (if that is how long you get the 360) would be the interferon volume equivalent of 180 mcg for a staggering 96 weeks.  No thanks.

Sounds like a desperate attempt to still push SOC tx in the face of future, much shorter treatment competition from the protease inhibitors.

Given your age and numbers, you made the right decision not to treat.

[l-horn]

Deciding not to treat right now isn't a permanent decision. You can change your mind and treat in a month, a year, or five years. So, don't look at it as that monumental of a decision. You don't want to treat RIGHT NOW. Nothing wrong with that.

Good luck to you.

[illo]

I was told in 03 I had HCV.  I opted to wait, but by waiting, my
viral load increased, and I developed cirrhosis.  It was rather quick
and unexpected.  If you can get it early, I'd say 'go for it'.  I did
natural herbs, which helps for sure, but the virus wanted
to survive at any cost.  So I've decided to take the tx now.  I can't
look back as it was my own decision.  But if I had to do it again,
I'd of taken the drug as soon as I found out about the HCV.
It's really up to you.  If it's a geno 1, the tx seems to work better
when you catch it early.

Good Luck with whatever you decide.