Looking for opinions tx vs wait

[pcds]

I failed being undec at week 12 and stopped, geno1.  My liver biopsy is 0-1grade, stage 1.  I went to Mayo to discuss tx with upcoming PIs and saw my new general doc, this is what both told me.  My urgency to tx is more psychological then medically urgent.  My general doc actually warned me the tx could cause medical problems longterm, and what if I did this to myself for psychological reasons (ridding myself of the virus) how would I feel then?  So much is coming down the road for tx, each one with shorter tx times less side effects.  I know the decision is mine.  I do feel this urgency to rid myself the virus as soon as possible when the new meds come out, but am I really acting in my best interest?  I am currently in great health, have great insurance and age 58.  The way the virus, my HCV is working is very slow after 40 yrs given my liver status, Mayo doc says it's behavior or aggressiveness doesn't change.  I drank way too much for much of the past 20 yrs.  Which stopped with dx.  So what do you all think?  I know this site is very treatment oriented.  But am I doing more harm than good in treating with these toxic meds?

[pcds]

I have this feeling that the virus is effecting me in other ways besides my liver.  I don't want to wait 5 yrs.  I think I will go ahead and suffer 6 months with Telaprevir and hopefully be done with it.  It's about 6-8 months away before Telaprevir comes out.  At this point in time no one should do SOC.  I almost wish I didn't find out about until better tx was available.  I did have a hard time, but I'm pretty tough.  I don't know why I'm getting so focused on tx'ing again.  I need to let it rest.
Thanks for your thoughts.  I wish Lambda was here already.  I hate waiting.
Judy

[CoStudy]

Nice to hear from you. You were on treatment when I started in the Lambda study. I take my final injection Monday morning at 9:00 am. I remember reading you posts and how you were feeling and your sx. In my honest opinion, I would wait. There are so many new treatments expected in the next 5 years. I would also look for Phase 3 trials of Interferon Lambda IL29 when it starts next year some time. I heard they will be taking non and slow responders in the next trial. My sx for the last 23 weeks have been very moderate and nothing that has stopped my way of life.

I have had HCV for 20+ years G2 S2. If I would not have had the chance to get into the Lambda study I would not have treated until something with a shorter time or fewer sx came out. I don't beleive the sx of SOC are worth the results. At 49 years old I would not have put myself through the suffering and taken the chance of life long side effects. If I was 20 years younger maybe!

Just my opinion.

Keep posting, you have a lot of experiance for the new people on the board.

[RobertBeWell]

"My sx on SOC were not as bad as others seem to remember.  I worked everyday, never called in sick and went running everyday.  Did I feel good?  No.  It was what I call "schleping along."  Lost my hair, rash, tanking HGB, I needed neupogin almost from the beginning which really took me down as much as the other drugs."

I think time has faded your memory more than you think. I guess it's all relative, but I would call all those side effects a pretty bad time. Esp the neutropenia. That Nupogen is some serious stuff.

Course, I'm speaking from the perspective of someone whose worst side effect so far was a slight flu like feeling from shot 1. All I ever get nowadays is maybe a little lethargy once in a while, and my eye muscles hurt sometimes, like I have the flu. That's what I call "schleping along" :-)

I'm thinking that no matter what you do, it'll be just fine. With the tiny bit of liver damage, you have many options, and time to evaluate them.

RBW

[pcds]

Debpar and Robertbewell, thanks.  You represent both sides of the coin I'm looking at.  I'm great full to have decent physicians to work with.  But I also know I'm just another number.  They can't give any guarantees.   I know I should wait for newer drugs, after Telaprevir or wait 2 years.  Interesting how Telaprevir stocks have not gone up much at all.  Partly due to the cost of release of the new drug and mostly because they will dominate the market for only 2 years.  I've been following the money, it tells a story.  Yes absolutely there will be better drugs.  I wish I could just chill and wait.  

My sx on SOC were not as bad as others seem to remember.  I worked everyday, never called in sick and went running everyday.  Did I feel good?  No.  It was what I call "schleping along."  Lost my hair, rash, tanking HGB, I needed neupogin almost from the beginning which really took me down as much as the other drugs.  I suppose I need to hear more when people start Telaprevir.  

[debpar]

Just a thought ... when the "Mayo doc says it's behavior or aggressiveness doesn't change" he/she is probably referring to it's pattern of behaviour or aggressiveness SPECIFICALLY in you to this point of time ... not compared with someone else's and not compared to how your body reacts during treatment.

My doc says it's like a slow bus crash.  If you haven't been symptomatic much, chances are that will continue until a better treatment is available.

I just don't think it's an easy choice for any of us.  

[debpar]

I've had cirrhosis for 5 years, moving towards decompensation (one bleed, some encephalopathy), have had HCV for +30 years. Everything that may or may not happen from here on in is just plain ugly.  

I can't translate half of what people say here ... perhaps being from Canada the language is different ... LOL (just the abbreviations get me ... don't always know what they mean)   I've been on treatment 4 times with various interferon and non interferon drugs and am a non-responder.  Some symptoms stayed for good ... in fact on interleukin I was still signing release forms two years after they halted treatment (they found out it causes Lou Gehrig's disease).  It's pretty hard for me to get excited about the new drug therapy that adds the third drug to interferon and ribavirin (is that the one everyone is talking about on here?) - because of the plethora of side effects I exerienced each and every time.   Would I have gone on treatment knowing I'd end up here?  Yes, I would have.  It's better than the alternatives I'm facing now.  My hepatologist says it will be 2 years before we get the new treatment ... I just hope I don't go to full decompensation before then.  It's ALL risky.  Easy for the doctors to say it's a psychological urgency ... he's not playing "roll the dice" with his own life.  I would wait for the new drug therapy, though.  Why not take the one with better odds?  

That's my two cents worth ... don't know if it helps.

[RobertBeWell]

I'm no doctor, but I **feel** that the rate of progression CAN and DOES change. The older we get, the less able the immune system is able to contain the virus, the less well the body is able to heal itself. I believe the graph of the damage might in fact be linear for many years, but I believe it starts to rise as we age. My opinion only.

You had a bad time with side effects. If I were you, I would wait, but I would get a biopsy every couple years. Yah, yah, I know they say five years. I'm just saying what I, personally, would do. For peace of mind.

If you can wait 5 or 6 years, and are continually monitoring the condition of your liver, who knows what new treatments may be available. At the very least, there will probably be several DAA's that will be administered with SoC, vastly shortening the treatment time and greatly raising the odds of success.

That's what I would do. Of course, if the psychological aspect of it is that troubling, then you have to consider that as well.

My $0.02.

[fretboard]

My urgency to tx is more psychological then medically urgent.  My general doc actually warned me the tx could cause medical problems longterm, and what if I did this to myself for psychological reasons (ridding myself of the virus) how would I feel then?
__________________________________________________________________
I have to agree with the above assessment and suggest you get a liver biopsy in 5yrs.  and not even concern yourself with txing until 5yrs has passed or until your body starts indicating that the HepC is affecting you in a detrimental manner or at least any manner at all.    good luck and God Bless

[WriteItDown]

I agree, the pace of progression can indeed change, I have no idea why the Mayo doc would've said otherwise.  

I would personally wait until the new meds come out and hope for a 24-week tx.

[babs824]

i agree with all the folks who suggest that you wait for different meds but just wonder why Mayo said that the disease does not change in aggressiveness or behavior. i have always been led to believe that after a certain number of years, maybe 30 or so) that the disease may become more virulent and one should not assume that its former pace is set in stone.
i hope the new meds are just the thing for u, best, babs

[Diane12855]

I know my time is getting shorter and shorter, and I really do hope that I will return to health when I get done. I was still UND at week 24, so that's good too... I know. It's just that I'm starting some new sx that are more neurological and frustrating to get treated. My hepatologist says go to my Internal Med doc, and I go to him, and he says that he doesn't know about all of the sx that tx causes and that I should talk to my hepatologist... what do I do now?

Sorry... feeling sorry for myself today, I guess.

Diane

[pcds]

Hey treatment buddy, I think of you often.  48 weeks is very tough on the old body.  But you will be done with this virus very soon.  You will be one of those lucky ones that gets the SVR and you will return to health.  I too want to get this over with.  Right now I'm 50-50.  I suppose when people start the new meds it will help me in making my decision.  Knowing me, I'm likely to jump again into the fight.

[Diane12855]

Nice to see you again. I go along with what desrt says.

I also want to add that now that I'm 30 weeks into tx and am seeing more scarry sx starting up... ones that I'm afraid may not go away after tx... I'm not as adamant about people doing tx if their biopsies are as good as yours. I tend to think that even if your first reading was correct at stage 2 grade 2, since you aren't having any health issues besides the psychological one, I wouldn't start tx. Even though the PIs shorten tx time, I wouldn't put these drugs into my body if I didn't have to.

Now, for anybody reading this who has only been infected 20 years or less and is already stage 2 or highter, and already dealing with the fatigue and body aches... I think you SHOULD do tx because things are only going to get worse without it.

That's just my personal opinion.

Diane

[pcds]

Thanks for your time in responding to my dilemma.  When I talk about waiting I mean waiting for the next round after the new PIs.  There is new interferon coming out in the future as well as new tx beyond the tela and boc.  
Judy

[djbn13]

Hey friend,
You are right about this site being treatment oriented so I'm sure you will get alot of treat now advise but you should do what's in your heart.  I am in almost the exact position you are and my both my doctors said the same thing as yours.

[eureka254]

Your past treatment experience with SOC would seem to indicate that you are a slow-responder and if you HAD continued, it would have probably been to 72 weeks and would still have been quite a long shot to SVR.  With minimal damage as a Stage 0-1, and slow response, I don't think your stopping at week 12 was a bad decision.

I do agree that your urgency is psychological since your biopsy diagnosis doesn't indicate the need for immediate treatment.  With the PIs appearing to be close to approval, I would seriously question the utility of treating with just SOC again -- I would think that your focus on treating again would be by adding one of the PIs when available (keeping in mind, though, that even if PIs become available, you would still have the option to wait for even better options down the line, being 0-1).  Doing the IL28 test may provide you with helpful info, but then again it may actually add to the confusion depending on the result.

Your current liver condition gives you the luxury of considering all possibilities -- no need to rush yourself.  I know it was a disappointing SOC result for you -- it may be that the addition of a PI will put you into SVR land, but in the meantime, until they hit the market, I'd say you're in a good position to just chill, imho.  ~eureka

PS: "The definition of insanity is doing the same thing over and over again and expecting different results". ~Einstein

[desrt]

Given your small amount of liver damage, I would wait for the PIs to come out. By that time you can have the results of the IL28B and your liver doc can give you a better idea of whether it's worth re-treating or just monitoring your fibrosis. If you go with the 'watch and wait' you may want to get another biopsy some time in the next few years, since there was such a large disparity in the interpretation of the last one. Also, continue to weigh your access to insurance into your decision if it looks like that might change. PegAssist and Commitment To Care programs may not be around forever. Good Luck with it.

[pcds]

I will get the IL28B test, good idea my general prac didn't want to order it, because she didn't know what to do with it, so I'll through my liver doc.  My biopsy was read again when I went for a consult at Mayo Clinic.  They gave me a lower score reading.  So what if my IL28B gave me a resistant type?  Does that mean the PIs don't work?  The Mayo doc had suggested I should have stayed on tx at week 12 with a 348 VL, the doc who was actually txing me at the time said stop with any VL at week 12.  So I did respond well to SOC with a greater then 2log drop.

[desrt]

Did you ever talk to your doctor about the IL28B test? That would play a large role in my decision making if I were geno 1. Also, your post says stage 0-1 and your profile says stage 2. Are these the results of two different biopsies?