To treat or not to treat, that is the question!

[truredhead]

I am so unsure about whether to treat the hep c with the interferon. I already received my first 3 months medicine from Roche. I have been reading so much about the side effects that is scares the heck out of me. All my blood tests are good so far as levels except the viral load is very high. I am a 1A geno, I do not drink and have been on methadone for 15 yrs. I have fibro and irritable bowel syndrome which seems to be better in last few months.My biopsy showed F1-F2, I am not sure when I aquired it, could have been a tattoo or former IV use. Just found out I had it year and half ago. Should I wait or treat? I just need some feedback I guess. My viral load was 24 million and that is the only bad thing I see on the blood tests. I know we addicts always expect the worse, but some of those sides never go away and I hate any mental probs starting, Its a wonder I am not goofy now! I sure you can tell how great I am at making decisions!

[IMstacie]

Regardless of the evolution of this crazy post, whenever and whatever your decision is, we will all be here to support you.  Good thoughts to you.

stacie

[IAmTheWalrus]

Makes sense to me. I hope you are successful and join the SVR club when you can.

BTW, I took 84 weeks of peg and riba and am no worse for the wear.

Brent

[Cory255]

Thanks...

[Bali05]

well said , and i totally agree.

[Cory255]

Well, A lot has transpired since I last posted on this thread.  I'm now hearing from hepatologists and other Dr's who actually know about the new Hep C drugs and are mentioning this to Hep C patients as an option......

I've changed my opinion from anyone treating now to waiting for better drugs.  I'm not saying this for any other reason except I think it's probably a wiser decision.  

AND if you've already started tx don't back out on it now.  Just if you're in the process of still deciding...

I think (my own personal opinion) for people with Genotype 1... 3 out of 10 people achieve SVR.  4 out of the 10 respond, but relapse, and the other 3 out of 10 are non-responders.....  I'm saying this because the virus is hardest to get rid of with geno 1...

I think the 50% clearance for genotype 1's is a little less.... Depends on what catagory of people you are in when they are taking the poll for percentage rates......

I DO HAVE THE OPTION TO GO THRU A 2ND ROUND OF TX.  I'M DECIDING TO WAIT...I DO RESPOND TO INTERFERON AND RIBAVIRIN.  
  
I'm deciding to wait before I go thru a 2nd round....

I would'nt go thru hep c tx unless you are very certain you have a good chance of winning...

For me I've been thru tx once already.  I cleared somewhere between wk 8 & 12.  Went for 44 wks RELAPSE.  

My decision to wait was based on My Dr's advice (one of the best Gastroenterologist's
around), My genotype 1 (hardest to get rid of), my prior relapse ( I don't see any reasosn why I wouldn't relapse again), and my increased odds of tx success with the new PI's.  

Whether you CAN go thru tx or not is a completely separate issue from whether you SHOULD or shouldn't.  

Be sure to work it out with your Dr, while they monitor they progress, to see if the medication is even working and then go from there...

Cory.

[Trinity4]

With your 504 posts and one poll; the majority of them pertaining to side effects and treatment along with numerous questions about how you will respond to treatment, what the outcome of geno 4 will be and a cascade of other questions all pertaining to hepc and treatment it certainly didn't appear to be a private matter.  NOT WHAT-SO-EVER.  

Now suddenly it is private and you did not wish to disclose the fact you have started pegylated interferon after numerous weeks of pre-dosing riba.  Hopefully no one will ask how your treatment is progressing nor take an interest in any side effects you might experience during you treatment. Your persistence in involving this forum up until this point was remarkable and you certainly never made it clear that all events leading up to this point were public knowledge until the actual plunge so I'm sure you understand how confusing and rather ridiculous this appears.

I won't mention that you've started treatment again.

Trinity

[Trinity4]

Sneaky, oh really. Didn't know it was a private matter since you have it posted on another public forum.  You made no mention of it being a private matter and I dare say I have 72 wks of twisted entertainment behind me and probably another 24 - 48 wks at some point so your treatment and how you respond is of no pratical value to me.  

If wishing you RVR and a shortened tx is insulting to you I will not wish you well again.

Trinity

[Trinity4]

Since you've started your interferon injections hopefully you'll be lucky and RVR with minimal side effects to boot.  That way, you can stop the interferon at 24 wks and hopefully no lingering adverse effects.

Trinity

[charm27]

First of all good luck with your decision making. Wish you lots of health.
I had a viral load of 75 million..1A Stage 2-  I decided to treat after I had my second biopsy- 1st biopsy in 1985- I showed inflammation-They didnt know about HepC at that time as we all know.
I ignored it up until 2007 had another biopsy ...I made my decision to literally give it a go at treatment. It was rough and worth it.

Charm

[Bali05]

yes , and hopefully the geno 1s who treated with PI will be SVR long before that
and not get any of the nasty sides from HepC.

[Bali05]

yes it is .

for example a trial done with nitazoxanide +SOC and geno 4 showed no difference in SVR but definately more sx when 36wk  compared to 48wk.
Nitazoxanide has next to no side effects.

[Trinity4]

There is no documented evidence showing the likelihood of adverse side effects will increase if exposed to 48 or 72 wks of interferon verses 24 wk.

Trinity

[desrt]

"The longer you are exposed to INF the greater the potential of adverse side effects. With Telaprevir you might be able to get away with 24wks  instead of 48 or even 72."

It'll probably be another 5-10 years before we know whether the long term effects of a 'shortened' triple tx are better or better or worse than the long term effects of simple SOC.

[Bali05]

you ask yourself wether or not to treat and you already have the meds ?

Are you planning on giving them back ?

Not sure if interferon is returnable all I know is it is very expensive.

As a geno 1 today that can afford to wait F1-F2 I would wait since most of the new

drugs around the corner are geno 1 targeted. The longer you are exposed to INF

the greater the potential of adverse side effects. With Telaprevir you might be able

to get away with 24wks  instead of 48 or even 72.

My hepatologist told me on average fibrosis progression is 1 stage in 5 years.

Talk to your hepatologist.

Bali

[kittyface]

Hi have you researched Alinia?  If you're going to tx now with SOC you may want to add this to increase chances of SVR.  Use the "Search Archives" function and you'll get lots of info.  

Kittyface

[nygirl7]

I can't say anything really - I use salt more than most people and am going to go out and have a cigarette right now. Plus it's Friday so that means they have pizza in the cafeteria.  I have more silent killers going on today than most people do in a month it would seem.

I guess the lesson really is that anything can kill you - I don't work on a train but could hit be one by tomorrow..........and really they aren't very silent at all.

[child24angel]

Puleeeezzzzeeee


How did I not know you would come back posting all
silent killers...we were speaking of HCV ML, on this forum anyway.

Once again I disagree.

Your post makes HCV sound like a scrap on the hand,
put a bandaid on it and then good to go.

You're right about one thing though,  I can think what I want and I shall.

I don't think everyone will get cirrhosis and die...that is not
what I said ML.  I've only shared my thoughts and experience.

From the CDC Website.
What are the long-term effects of Hepatitis C?
Of every 100 people infected with the Hepatitis C virus, about

75–85 people will develop chronic Hepatitis C virus infection; of those,
60–70 people will go on to develop chronic liver disease
5–20 people will go on to develop cirrhosis over a period of 20–30 years
1–5 people will die from cirrhosis or liver cancer .

I sure know a lot of people in the 1 percentile range, apparently so do you.
Once again, go ahead, see how many livers there are to go around.
I was told 1 in four people will actually get livers if needed, from a well known
hepatologist and that was over two years ago.

I still stand by with all my friends with HCV,
cirrhosis, and/or ESLD.  Even one is too many for this silent killer

Take care all

[jusjames]

hardly rocket science is it , salt is bad for you, yeah thats pretty well known

[mikesimon]

Hi portann,

Thank you so much for recognizing and commenting on the wisdom contained in Mr. Liver's erudite post.

I appreciate you calling it to my attention - had you not posted I might have missed it.

I wasn't quite as fond of the excerpt you cited as you apparently are but that certainly doesn't negate the value of your post.

Thanks again and I'm going to watch my salt intake closely too - thanks to you and Mr Liver.

Mike

[portann]

Hi Mr. Liver,

Excellent post!  You address the issues compassionately and logically.

Thank you for your thoughts, especially this part:

"The loss of any human to any disease is a tragic occurrence... I have known more ppl with HCV than most so I have known more who died also. And I've never diminshed the role of treatment...I champion it...as tragic as it is it doesn't give anyone the right to inflate the risk and make it sound as if [when] you hit cirrhosis you will get cancer and die...it does not alter the fact one bit that HCV rarely kills."

Thanks again. And I'll watch my salt for sure.

Susan

[FlGuy]

You seem to imply that the only health-impacting result of HCV is HCC and that the low rate of fatality for HCV HCC is so low that it's hardly worth sneezing at.

[nygirl7]

Lots of Silent Killers out there but it doesn't demean the fact that heart disease can cause you to drop dead - out of absolutely no where it would seem but you are still deader than dead.  With proper treatment however to control the heart disease you could live for ages. Ask my mother who just went through congestive heart failure if she wishes that she would have stopped smoking (another silent killer) and had lowered her cholesterol (another silent killer).

Thats the point. Thanks for bringing this up.

[Mr Liver]

The loss of any human to any disease is a tragic occurrence for the family and friends. I've lost loved ones as I suspect everyone on this forum has. I have known more ppl with HCV than most so I have known more who died also. And I've never diminshed the role of treatment when it is appropriate and necessary. I champion it and I have the posts to prove it. But as tragic as it is it doesn't give anyone the right to inflate the risk and make it sound as if you hit cirrhosis you will get cancer and die. No matter how many people I have known personally who have succumbed to liver failure it does not alter the fact one bit that HCV rarely kills. Many studies that have been verified state HCC occurrence is as low as 1%. Deduct those who will tx the HCC and remove it (20%) and live happily ever after. So when it is repeated ad nauseum that HCC is gonna get ya ,its a blatant misrepresntation of the known facts, and I feel the poster owes it to the reader to give the true incidence rates to avoid bringing unneccesary anxiety to the issue. In order to make an informed decision facts must be used. And omission of facts is the same as lying .
This is the first web page that was brought up when I did a quick search. I've got a bad feeling that some of these may have seniority over HCV for the usage of Silent Killer since they have been around for much longer.

Salt is called "The Silent Killer'.

Ovarian cancer is called "The Silent Killer".

High Blood Pressure has been  called the largest of "The Silent Killer'

Diabetes is called "The Silent Killer"

Colon cancer is called "The Silent Killer"

Smoking is called "The Silent Killer":.

High cholesterol is referred to as " The Silent Killer"

Emphsyema patients refer to their disease as (you guessed it) "The Silent Killer"

There are more but you get the point.

You can call HCV the Silent Killer if you want. But it is not a very accurate descriptor given the mortality rate in the US from HCV. When I think of killer diseases I think of smoking. 60% of those who smoke or smoked will die from it. That's over half ! Compare that to the 1%-4% mortality rate from HCC. There are people who have treated and still smoke cigs and then somehow they gather of some of their selfrighteousness and march off to the computer to frighten ppl that have HCV with a cig hanging out of their mouth. Puhleeeze.

http://www.google.com/search?q=diseases+called+silent+killer&rls=com.microsoft:en-us:IE-SearchBox&ie=UTF-8&oe=UTF-8&sourceid=ie7&rlz=1I7GGIE_en

[nygirl7]

Amen sister!  It's just a horrible thing to have to experience and unfortunately for many of us we've had to watch more than one person lose this battle.  How I wish I had known I had it back then and had treated successfully perhaps I could have had some influence on two of my friends lack of knowledge on what would happen. I can't feel guilty because I didn't know much yet but once you do......that does not go away quietly.

Good luck with getting your bladder put back redhead - I hope that treatment is easy on you and you are one of the lucky ones!