wait or not?

It seems my Drs are saying they recommend I do treatment, but that the choice is really up to me. I'm stage 2 grade 2. I don't know what to do. If I wait for better drugs in a few years, then I also take a chance at having more liver damage by then. I know stage 2 is not the worst. But it is not healthy either. I guess my question is..being at stage 2 already, should I treat now. Or do I have time to wait??

[1oftheclub222]

that is such a personal decision...lots of factors to consider...how long do you think you have had this?  what type do you have? How old are you?  do you have the support to treat now (personal, financial, insurance, etc).  will you have that support if you wait?  How is having the disease affecting you mentally?  so many other things to consider... At the very least you have time to make up your mind one way or the other...stage 2 seems to be the border line, once it is at stage 3 not so much time to wait...

for me, i am at stage 0/1, I decided to treat now because the time was right for me.  i didn't see the sense in waiting for more damage to be done to my liver and had the personnal support and the insurance to treat now...i have no way of knowing if I will have those things 5 yrs from now, plus I would be 5 yrs older and it may be harder on me to treat then..i just wanted to be done with this and carry on with my life if I can...

[indy531]

I chose to treat at stage 0, grade 3-why?  Shorter tx duration, younger ( I don't want to do this in nmy 60's), good ins. coverage and most importantly for me-I didnt want the psychic wasp nest of HCV over my head; I want to live my life and grow old!!

[willbb]

It seems my Drs are saying they recommend I do treatment,
---------------------------------
sounds like a plan  :)
Will

[nygirl7]

Generally it's best to do what your doctors advise, they would know things we here to not.  If you wait till you are stage 3 you could slide into stage 4 without realizing it....

[pooh55811]

I am a Genotype 1 with liver biopsy grade 2, stage 2. I have had Hep C for 30-35 years.

I have had some health problems which are now attributed to Hep C virus. Systemic vasculitis was the most severe disease I had that Hep C most probably caused - hemolytic anemia, pericaritis, pericardial effesions, pleuritis, pleural effusions - I was off work for 7 months with it. I have no idea what stage I was at when I had vasculitis, but thrt was over 18 years ago so I highly doubt my Hep C  had affected my liver that much.I could have been at stage 0. Regardless, Hep C is not benign at any stage.

I was diagnosed last July and chose to treat immediately (started in Sept.). I did not want any more related health problems to come along. I have no idea how fast my fibrosis is progressing and if I have time to wait for new drugs in a few years. I know some people on the forum have posted that they went from a low stage to a high stage in just 2-3 years. I have insurance and I am retired (so don't have to worry about a job). These were all factors in my decision, but to be honest, I just wanted to get rid of it before it did any more damage. Anyway, I am at stage 2 and the next stage (stage 3) raises the stake considerably (in my opinion). I really would rather treat at stage 2 than at stage 3. I could be more symptomatic at stage 3. Plus it is easier to treat people who have less damage than to treat people with more damage.The chances of success are greater if one has less damage.

Your decision to treat or not to treat now, as has been mentioned, is a very personal decision and depends on your individual situation. If you have adequate insurance, some support, plans A and B if you are working and cannot continue, financial stability, and are healthy enough to treat, then your decision would probably boil down to "do you want to treat now and hopefully get rid of it or do you think you have time to wait for new drugs" (and no one knows that answer).

There are several people on this forum who are stage 3  or stage 4 and they probably have more insight on this than I do. Perhaps some will post.

I hope you will discuss the pros and cons (of treating now versus later) with your doctor. Read as much as you can and make an informed decision. I wish you the very best.

[orphanedhawk]

Before you jump in and begin tx have you considered looking into one of the new oral trials?

I've never done one and know they have pros and cons like anything else, but if I were you, its an option I'd explore.

Ultimately as mentioned by others here, the choice is yours. Look deep inside yourself,  and do what 'feels' right.

Good luck.
OH

[nowhine]

I agree with what the others have suggested. As a option, if your personal situation, insurance, support, etc. will still be the same, maybe you could wait, perhaps 1 year, and check out data that is becoming available on the new all orals. It is moving fast. The current treatment options will still be available to you then. Perhaps discuss option this with your doc.

[nowhine]

correction, perhaps discuss this option with your doc. I think you know what I mean to say.

[fretboard]

You mean your PCP or a HepC doctor, gastro?  Are you having any symptoms associated with the liver damage?  Gastro problems like acid reflux, swelling, spider angiomas, anything?  Although I agree with the above tx is a huge under taking and you absolutely have to be ready for it.  Besides, I like to see the bigger picture.  

One thing for absolute certain is it's better to tx when you're in your 30's than your 40's or 50's.  

[summer7799]

Well my Dr did offer me an all oral trial that he is over seeing. But you have to go to the hospital 14 days in a row for a few hours every day. I can't do that with work. Just not possible, especially since I can't tell anyone at work about the HCV. I read the thread about long lasting side effects of interferon. It had over 500 comments. It FREAKED me out!!! I had no idea that interferon can mess people up so bad! I don't want to take it now! I feel trapped in this whole thing. It's a horrible feeling. I'm scared of the treatment drugs. But if I wait for better drugs I could be dead or have cancer. It's a lose lose situation. Sorry for the pity party but this is making me depressed!!!!!

[summer7799]

What is spider angiomas??? Yes I'm in my 30s. I have good health insurance. I hate living every day knowing this virus is in my body attacking me. I want it out! But using interferon poison that could lead to more serious long term health problems doesn't make me want to do it. Some people say they never recover from the interferon and that their quality of life is taken away. I don't know if I want to take that chance. One day people will probably sue the pharma companys for what interferon did to them long term.

[1oftheclub222]

there are many many people who have taken interferon and didn't have lasting affects except for the fact that it cured their hep C.  You just don't hear from them cause they are off living their Hep C free life now!  the side effects don't always come on so hard either.  what type of hep C do you have? what type of treatment are you looking at?

I have type 2 and just started Peg/Rib dual treatment last Friday.  So far not to horrible, I never got a fever or chills, just tired at the end of the day, but to be honest I have a double whammy going this week ('that' time for me, sorry for the TMI guys!) so I am not sure how much has to do with the treatment and how much has to do with being a woman.  Overall it has not been horrible though, very managable.  I am working, taking the kids to practice, doing all the things I normally do, I'm just really ready to sleep at the end of the day.

I don't know if it will get worse as time goes on, but for now i am not having the dreaded horrible side effects from Interferon, I am thinking it will be very doable.  

it is different for everyone, and it seems to be that the ones with the bad side effects are the ones we hear from the most, cause they are looking for answers, the ones with only a little side effects have no need to post as much...it all needs to be kept in context...

[willbb]

You should have a 2 log(10) drop by week 4 or you may not sufficiently respond to IFN.

----------------------------------------------------------
Please post the data that states this......
Will

[suezeeque]

A greater than 2 log drop at *12* weeks on SOC is considered EVR.  Don't know where 4 weeks comes from...

[nygirl7]

Personally I always heard it was a two log drop by week 12 with IFN.  I've never seen data to say 4 weeks before myself.

[1oftheclub222]

not sure how reliable this is, but kind of runs through some of the RVR,EVR stuff:

EVR (Early Virological Response): EVR means that hepatitis C viral load has dropped by 99% (2 logs), or is undetectable after 12 weeks of HCV treatment. An EVR is a good predictor of the ultimate response to HCV treatment. If a person does not have an EVR, their chance of SVR is very low (1-4%). Usually, HCV treatment is discontinued in people who do not have an EVR.

this is from 2008, so i would think they are talking dual therapy and not sure if things have changed since 2008 regarding this guideline.


http://www.thebody.com/content/art46371.html

[suezeeque]

The comment made above said a 2 log drop at week 4 WITH A 4 week lead-in of SOC.

Which means a 2 log drop must be achieved with SOC alone because that is the lead in time of SOC that the poster recommended.

That is inaccurate.

[nygirl7]

Usually, HCV treatment is discontinued in people who do not have an EVR"


Nah docs wont discontinue until week 12 test in most cases with SOC. I did not UND until after week 12 but before week 24 and although I extended to week 72, I have been SVR since treating in 2005.

[can-do-man]

That 2 log drop comment wouldn't be right even if he was talking about treating with Victrelis as they only look for at least a 1 log drop after the 4 week lead in.

[willbb]

The comment made above said a 2 log drop at week 4 WITH A 4 week lead-in of SOC.
That is inaccurate.
------------------------------------------------------------------------------------------------
Your are correct Sue..it is inaccurate. When one gives opinions to someone who is wrestling with and contemplating something as important as to when to treat..it is best not to just throw out opinions unless they are based in fact. The best way to do this is to read the data and copy the link. It is confusing enough for new folks without haphazardly posting incorrect info.

Good luck with what you decide summer..
Will

http://cms.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20New%20Agents/Module/Practical_Guide.aspx



The highest SVR rates were found in patients treated with a boceprevir-based regimen who experienced a ≥ 1 log10 decline in HCV RNA after the lead-in phase, regardless of IL28B genotype (Figure 8).
Between 75 -82 %

[orphanedhawk]

If you don't want to do an oral trial because you can't miss work for only 14 days, then you should think hard and long about doing tx for 24 weeks or longer.
Many people can't work while doing it though others can.
14 days is nothing!

As far as long term side effects of interferon tx goes, its a chance those on tx take.
Some do fine, recoup, go on with their lives and never post on forums.
Others do indeed have long lasting problems.
The gamble is worth it for those who are looking at cirrhosis or transplant.

[nygirl7]

Amen sista great post!

[1oftheclub222]

Nah docs wont discontinue until week 12 test in most cases with SOC. I did not UND until after week 12 but before week 24 and although I extended to week 72, I have been SVR since treating in 2005.
.____________________________________________________________

That is good to know, I thought if I didn't reach UND by 12 weeks I may be told to stop treatment...that was my new thing to worry about, ha...cause life isn't complete unless I have something to needlessly worry about....

[summer7799]

I'm genotype 1. VL is 6 million. I'm stage 2 and grade 2. I also have fatty liver disease (gross!) I did the il28b test and it came back with the best score. ( can't remember the letters). I'm 34 and I'm scared of interferon!!!

[suezeeque]

Everyone who is faced with the prospect of treating with interferon is scared.  I know I was, however, it was a more 'general' fear that I laid at interferon's doorstep rather than specific.

So many people have treated with interferon and gone on with their lives.

I'd be WAY more scared of the new PIs than interferon.  My experience was a walk in the park compared to many I've seen posting here who are on the new PIs.

But they seem to have a good success rate with shorter treatment duration.  Can't have everything, I guess.

The choice is yours and yours alone to make.  Anything easy to attain isn't worth having.  Most of the time.  ;)

[fretboard]

"Just not possible, especially since I can't tell anyone at work about the HCV."

That is a very tough position to be in.  You may want to have a cancer story ready because tx may show and you gotta have something to say. People are nosey as he!!.  I tried tx without telling anyone at work and it was one of the worst decisions I ever made in my life.  

If you can get into one of the oral trials only that may be one way to go but you may want to wait as most of those trials are real new, like Phase II and one of them was halted awhile back.  If you're dead set against interferon wait a year until the oral trials start doing better.  There are still many issues with those non-interferon clinical trials.  Most people who tx with interferon don't have many problems at all.   Also, many of the people who were posting on that (iinteferon bashing) thread had other issues to begin with.  Think of this, Natalie Cole started tx and within 6 weeks she needed dialysis b/c her kidneys were failing.  Does she blame the interferon, no she said she was simply sicker than she thought when she started tx.  That's the position many other people are in when they start tx so they blame everything on interferon.  The truth many times is they were getting old and broken down and before they tried the interferon.  Sure sometimes people do really get bad after affects from interferon but does it happen to everyone, NO!!

Whether to tx now or wait? Oh but no interferon.  Is that the whole question?  The answer is tx is what it is and you may not have many sx's or problems at all, even if you tx with IFN.  The problem is, you'll never know until you start.  If you're asking if you should start a non-IFN clinical trial, I say wait a year by then they will have all the kinks out and you can get in a better promising Phase III trial.  jmho
good luck!!  


http://en.wikipedia.org/wiki/Spider_angioma

[can-do-man]

"I'm 34 and I'm scared of interferon!!! "

I'd be more scared of cirrhosis, been there done that.... Now thats a life changer..... Good luck to you

[can-do-man]

One other thing to think about, unless you were born with HCV you seem to be advancing fairly fast by being stage 2 grade 2 and only 34. Something you might want to talk with your doctor about. Wishing you the best on what ever you decide.

[OdinLovesLife]

I think OH has made a very good point there.

If it was me, I would try a PSI 7977 all orals trial first because there is a good chance of a cure without the risks and hardship of the current treatments. Your liver will be getting a break while you are on a treatment that definitely won't keep you away from work for months. it is an absolute no brainer for me, but I know what IFN treatment is like for me. I can understand that when you haven't experienced either alternative it seems like a difficult choice. All you can do is list up known SX for each treatment, costs, time off work potential and then make your choice.

I would ask for two weeks off work, even leave without pay. You don't have to tell them exactly what you are doing during that time.

You are only treatment naive once though. After SOC, if it fails, you will have much less chance of getting into a trial.

Good luck Summer. You still have some time and some options. It might not seem like it now but it is a good place to be in... May I say be a bit less anxious and a bit more excited that you have choices?

[pooh55811]

I was terrified before I started treatment. I think most of us are because we have no idea how we will feel on the triple med treatment (or SOC or any treatment, for that matter).

Before I started treatment I kept reading about the meds and going over the side effects. I had to keep reminding myself there was no way I would have every single side effect listed, lol. (And I did not.)

The side effects and the treatment are no picnic, at least not for me, although some people seem to sail through with very few problems or side effects. However, having stated that, I was able to make it through the 12 weeks of Incivek and am now in week 18 of treatment. Incivek was no picnic, that is for sure, but the truth is, had I known when I started what I know now in terms of how to best handle the side effects, I would have had a lot easier time. If I ever have to treat again (hope not, lol) I will definitely be much more assertive and proactive about getting on top of the side effects right away with the appropriate remedy (including prescription meds since often the over the counter meds are not strong enough) because the side effects snowball if one does not get on them right away.

The side effects are mostly manageable and doable. I am still in the game after 18 weeks (and some have treated 84 or more weeks, and one person on the forum has treated 8 times, on her eighth treatment now). I still have 30 more weeks (48 weeks total). I will do it. I would even do the Incivek again if I had. I will do just about anything to get rid of this virus and stop the progression.

Basically, I am commenting because I would hate to see someone decide not to do treatment based on a couple of threads where people have slammed interferon. I am not saying interferon is great and side effect free because it is not, but I think one needs to look at the total picture and then make a very informed decision weighing all factors. The decision is best made by weighing all data and factors concerning treatment and the consequences of not treating, and by not allowing one factor or fear to carry more weight than it should.

Still, this is a very personal decision based on your own circumstances and disease process. It is a decision only you can make with the input of as much (correct) information as possible and with the help of your doctor.

I hope things go well for you.

[summer7799]

I was not born with HCV (as far as I know) My mom passed away 8 years ago and as far as I know she didnt have HCV. Im assuming I got it when I was 18 years old. So that would mean I have had it around 16 years. Do you think 16 years to get to stage 2 is fast? I was a liitle surprised that I was stage 2 also. I know a woman in her 60s who has had it forever and stil has no liver damage...another question to add to my list for my next dr appt. Also my uncle was diagnosed with stage 4 liver cancer last year. They gave him 6 months to live. He just finished his last round of chemo and he is stil here!! Sometimes its good when drs are wrong :)

[can-do-man]

While everyone is different, i have noticed around here that most people that have been here in their late 20's early 30's have very little if any damage and a lot in their late 40's early 50's are mid stage 2 like your self.

Please don't let a thread scare you to much, my guess would be 8 out of 10 have no post interferon problems and some blame it on interferon when it just might be that they are getting old just like everyone else

You still have plenty of time to think this out, no need to rush into anything. Being that i do have cirrhosis i wish i would have been able to rid myself of hcv a lot sooner.

[can-do-man]

As will posted,
The highest SVR rates were found in patients treated with a boceprevir-based regimen who experienced a ≥ 1 log10 decline in HCV RNA after the lead-in phase, regardless of IL28B genotype (Figure 8).
Between 75 -82 %

Pretty good odds to just quit, but you seem to think you know best, even more then the true experts.

[willbb]

I have watched the slide show you referenced many times over the last 2 years as it is been around awhile..and the data in it is no different than the up to date information  that I am also very familiar with .
The higher the amount of virons eradicated early is always ideal and the ultimate would be to be UND(RVR). during the lead in phase,however the therapy regime recommended by Merck and I linked them in my post above were if one has >1 log drop in that time frame the protocol is to continue and the results from  both the "sprint and "respond  Boceprevir trials show in that case to be between 75 -82% SVR. There is nothing mentioned in any of the data that a 2 log drop during leadi is requred to continue as you mentioned.
Best.

Will


http://cms.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20New%20Agents/Module/Practical_Guide.aspx

The highest SVR rates were found in patients treated with a boceprevir-based regimen who experienced a ≥ 1 log10 decline in HCV RNA after the lead-in phase, regardless of IL28B genotype (Figure 8).
Between 75 -82 %

[can-do-man]

"however, if i only had a 1 log drop, i'd have a long serious discussion with my hematologist before continuing.  my vote would be stop."

Yeah maybe your right, some one heading into cirrhosis or already there just might want to wait since being cirrhotic is so much fun, heck everybody ought to try it.......... Unreal!!!

[orphanedhawk]

I'm not following all of this but I did tx with cirrhosis and it was he!!.
Now, post tp, I'm doing it and its much, much easier.
Fun? No but I'm not losing my new liver, no way, no how!

[willbb]

Well if the 82% is not enough for you possibly waiting till there is 100% may be your better bet...many can "t wait for that panecea..
Good luck with you future tx..
Will

[willbb]

Very sorry summer..this thread of yours has gone way off the beaten path and  must be  making things even more confusing for you.. I sincerely apologize for my part in that .
Best of luck with  the desicion you make with  your doctors advice. That is what should always be done anyway...
Will

[flcyclist]

Hummm.  Another person that likes to yell and use caps??  

[willbb]

I FAILED TRIPLE... HELLO?  

--------------------------------------

  Ah.hello...sorry to hear that..welcome to the group...lots of good knowledgeable folks here.Possibly  they can be of some help...

Will

[jules2551]

Is there a place you can post off topic issues and/or vent?  I mean I'd just like to keep this discussion on topic.  Thank you

Sounds like your getting a little testy!  Maybe you should take your own advice from a previous post like above!

lol have a great night

[almawe]

How long ago did you fail at tripple?...l lasted a month before l was pulled off last May...teleprivar

[almawe]

I did not have enough of a fall in viral load...was in a trial, so don't know how much it fell, if at all!

[almawe]

The trial l was in was dosing tela 8 hrs versus 12 hrs...not sure what to do now as regards possible resistence...l spoke to my gastro dr re a test to check for resistence, he said it was not detailed enough...l live in Australia and attend the Alfred hospital

[almawe]

genotype 1a...age 57, had hep c for 35 yrs , stage 2 fibrosis...they just say viral lioad did not drop enough...results are blinded..however now l am not on the trial, l do get all my viral load counts etc...just not for the month l was on treatment