To tx or not to tx

[fooledagain]

I am Genotype 1a, stage 2, viral load unknown with some fibrosis. My question is should I wait and see if there is something less toxic coming soon on the horizon? or should I just bite the proverbial bullet and get it done? I really hate forgeting simple things and can't work like I used to, due the fatigue.

[fooledagain]

Thanks for the insight. My mom had a double mastectomy in '85 combined with chemo, her reactions were not as severe as most, i.e., she didn't lose any hair or get really nauseous. So on that I believe that I might be genetically predisposed (fingers crossed), to be biologically the same as mom and react accordingly. I don't drink, smoke or do drugs, other than prescribed. I'm trying to take care of myself. Sometimes winning, sometimes losing the battle of the bulge :), but I do work a whole lot of hours. As much as 80 hrs. in a week. It takes quite a bit out of me, but I live on Marco Island and if you've ever been there you'll know what I'm talking about when I say the cost of living is a "bit" high.
As an aside, I'm really, really impressed with the accumen of the individuals on this site. Amazing! As a whole, everybody is exceedingly up on information and vocabulary. The best thing is that there isn't any negativity, which is quite refreshing.
                                                                                
Thank all of you for your time and the info!!!

Scott  

[moahunter]

Good luck Lady Lauri - it seems to me you have thought about this, and accordingly will have the strength to stick it out if the results are good.

I have not gone through chemo, but from talking to my wife who is a nurse, she tells me that her impression is that the side effects of chemo are far worse. However, Hep C treatment is more of a grind, as chemo rarely lasts more than 3 months, i.e. Hep C treatment affects your life for longer, but chemo will knock a lot more out of you. I wouldn't wish either on anyone, but then, I wouldn't wish Cancer or Hep C on anyone either. Health issues will happen to virtually all people at some point in our live's, how we deal with them, whether they be Hep C, Cancer, MS, etc. depends lot on who and what we are. There is no wrong or right, but there will be different views, as no two people see things the same way.

With respect to hair loss, I found I started losing hair (quite a bit of thining and change in texture) at around 20 weeks, which was around the time my Hep C nurse estimated at the outset. It almost seems to me that the symptoms changed a little around this time, almost as if the "long-term" symptoms had arrived. Sounds to me like the 2% the chemo nurse s refferring to the risk that all hair will be lost, which I am guessing is not likely.

On the warrior issue, I think it really comes down to the quality of medical care. A good doctor will not let you continue if you have not really responded at all by 4 weeks, or by a sufficient margin by 12 weeks. 4 to 12 weeks is not really that long, which is why I encourage people who are in doubt but eligible for treatment to give it a try and see how they react.

[Lady Lauri]

I have seen several of your post and how hard it's been. Exactly what was your tx and more than once? Other health issues before?
Very sorry you suffer a lot and hope it gets better and you get some 'normalcy' back.
                                                                              LL

[Lady Lauri]

D*M! Don't realize how much your babbling till you post it!
I CAN talk a lot! sorry so long!
                                                              LL

[Lady Lauri]

  
Wow, 1st thread I agree with everybody’s different views! :)  With stage 2, and given , from this point, you don't drink, do drugs, take very good care of yourself, you could wait a year or two for the phase 3 drugs to come out and sure that a monthly shot will beat the weekly, etc. , yet I also tend to agree that we don't know the long term effects of the newer ones, versus we know (SOME) of the older tx's. Zooz333 is right on the things to do to help with effects of hep and correct in ..however 'the virus is still there'. Without any of us being able to estimate how fast damage will progress, the decision of 'now or later' is, to some point, simply a gamble, with never any guarantees whether it be of SVR, damage from tx, or a better or possibly worse life afterwards. That is what makes this disease so hard in decisions‘. Even with cancer, they can more than not estimate progression, time, etc. (other than those with hep that continue drinking, damaging lifestyle. progression is a fast certainty than!)
I also agree with the 'warrior' comment, as once you start the fight, it's 'ON'! I had the mind set of "I'll try it, get's too tough, I'll quit“, but that fast went to "I HAVE to beat this, stick with it". (of course finding out I get no answers to if it's working in this trial until 12 weeks  kicked that thought out!). As I am type 2b tho, I am sure my decision was easier than all those with type 1. As for less tx time, 85-90 % success and so on. If I was not stage 3, I still may have waited. All of my decisions just rolled into place tho, the timing of this trial, all free, a good Dr., my type, my work, and so on so I went with all the 'signs' it's time. Also, even if I do quit at 12-14 weeks, my SVR is still a 80-85% chance. Even with all the odd's in favor, deciding to start a toxic tx was a hard thing, especially being a person that always tried the 'natural' remedies in everything. I researched extensively, but did quickly learn when to stop reading or I'd scare myself out of it. In my case, the start of tx was a huge weight off of me, while very much anxiety in so much unknown ahead. Unfortunately, with all the very good points made here, there is still no answers for us in these questions :{ Such a different decision, case, outcome, sides, long term for each one of us with the same disease!
  An added question, as our 'chemo' is antiviral, shots, pill’s, has anyone here done chemo for cancer to compare the severity’s? With a sister (still on it) and friend (she passed) that went thru that fight, and having been there with them, it seems our dose's are much less severe. On my 1st tx Tues., my sister was across the street (Shands) getting her tx at the same time. I had much anxiety 'waiting'  for effects and I went over to see her. Upon walking into that chemo room, all in the chairs, ports being filled with chemo for hours, an 18 year old next to her..... all my anxiety left me and my heart went to them. It gave me that 'Lord, look at what they go thru! I CAN handle this' attitude back. Incidently , a chemo nurse there said that it’s only 2% chance of loosing hair with hep tx? While the least of my sides concerns ( and I have a lot of hair!:}, Think she’s right of needs more nursing school :-} ?
Follow your gut, Fooledagain. I personally decided the fatigue, hep symptoms/problems were already 'robbing' my youth. Just praying tx doesn't 'age' me as some above said.
Good thread! Good luck to you.
( all that and I am ONE whole week into tx. :}

                                                             Lauri

[moahunter]

No worries Jim, I just feel grumpy, so fear what I write matches how I feel:-). Getting used to this though, take a sleeping pill tonght, will feel a little better tommorow. Oddly, as yucky as it is, I almost crave the interferon now, it becomes part of your life after a while - I guess we can adapt to anything. I'm the type who would rather do something than nothing, and it can make it hard for me to understand the choices of others, but I respect we all make our own choices. The key is that those choices are with good information, or provided on the guidance of a doctor with the expertise waranting our trust.

[jmjm530]

I think it's more than speculation that inteferon alters the immune system in negative ways which can often continue post treatment. Autoimmune conditions like psoriasis, for example frequently flare on treatment (a paranoid immune system overprotects the body). And after treatment, many of us have altered metabolisms that can cause a more negative metabolic syndrome among other things. Inteferon has a tendency to bring out anything hanging in the "wing's", things that might come out anyway, but just not so soon. In that sense, I think intefereon ages some of us significantly by bringing these future health problems into the present.

No, I didn't think you were bient "grumpy", just expressing your opinion, which btw I don't entirely disagree with.

All the best,

-- Jim

[jmjm530]

Yes. The problem is that these concepts only start to become clear after you're already gone through the treatment process :) I mean, "practice makes perfect" is OK with some things, but when it comes to interferon, best to get it right the first time. And frankly, the medical community -- who does have the treatment experience -- has really let a lot of folks down.

-- Jim

[moahunter]

I sort of think of interferon as just that stuff that gives you a chill when you get a flu. All we are doing is boosting that, just adding more of the natural stuff we make by ourselves. Maybe for an unlucky few, it will alter the imune system in a negative way, but who knows what Teleprevir will do? We probably won't for another 10 years until we have more experience of it, like we do with interferon. Ribarvivrin is not that pleasent either. All these treatments are toxic to some, but Hep C symptoms are not that plesant for many either.

PS. sorry if I come accross as grumpy tonight, always am after my shot Friday morning:-(

[jmjm530]

I'd also add that Watching and Waiting was a reasonable strategy for some before Teleprevir was even discovered. The new drugs are not the only reason to watch and wait. In essence the reasoning behind watching and waiting is that one thinks that the risks of treatment outweigh the benefits of SVR (or a chance of SVR). All Teleprevir does is alter that equation somewhat, but even if Teleprevir proves as successful as we hope, it's still quite reasonable for some to decide to keep waiting.

-- Jim

[jmjm530]

Yes, Teleprevir has it's own side effect profile, and we will learn more about that profile in about a month. But assuming preliminary reports are confirmed by the new data, the big breakthrough is that treating with Teleprevir can shorten treatment time by 1/2 with a significantly better SVR percentage. That potentially means 24 weeks exposure to interferon as opposed to 48 weeks or even longer with the current SOC drugs. The reason that limiting exposure to interferon is so important, is because interferon isn't just a drug that helps kill the virus, it's a drug that alters the entire immune system, possibly long-term, possibly permanently. Of course, we all pick our own poisions, but personally, my choice is to pick the poison that doesn't alter the immune system.

-- Jim

[moahunter]

You make a good point there. I think I have seen a few posts here where people appear to be on the bottom of a bell curve, in the hope of UND (seems to be bad science). It is hard to stop when you see your viral load drop, but the relationship is not linear. It seems to  me to be all about having a good hit, a good curve, at the start. If you fail, probably better to stop and try for another bell curve, or perhaps wait for a new treatment. But agreed, easier said than done.

[jmjm530]

Moa: I see no downside at all to at least trying 4 weeks (to see if you are rapid responder), 3 months if you can tolerate it. You can make a better decision then.
------------------
In theory, going into treatment with an agressive stop rule makes a lot of sense for some. One stop rule, for example, might be to stop treatment if not UND by week 4. However, theory and practice are often not the same, especially when one gets into "warrior mode" for treatment -- a mode btw that is almost a requisite.

And once in warrior mode it's not so easy to stop at week 4, especially if you're oh so, oh so close to that UND. And most will not be UND by week 4.

So now it's week 12, and still almost UND. Almost. So you plunge onward and finally get that UND somewhere between week 12 and 24, only to be told that now you must treat for 72 weeks since you missed UND at week 12. Well, you've already invested 20 weeks, you're a hep c warrior, what the hey....  

No, unless you (and your doctor) are a lot more disciplined than is often seen,
I think what you got to do is make the decision going in, whether or not treatment is in your interest. Otherwise, you're facing a potentially very slippery slope.

-- Jim

[moahunter]

Won't adding another drug (Teleprevir or whatever) to the mix, just make tx side effects worse? Just my opinon, but if the current treatment can work for someone, might as well find out. New drugs will give a second option then. To each their own though, it's a personal decision. I don't wish these side effects on anyone, but I have a cousin who died of Hep C, and I personally decided waiting around for a miracle was not going to make me better.

[jmjm530]

What do you mean "viral load unknown" ? Why is it unknown, when you can find out with a simple blood test.

To your question, if it were me I'd wait. BTW in about a month there will be some very important SVR data presented at AASLD regarding Teleprevir. At least wait until then, and digest the results before making any decisions.

-- Jim

[moahunter]

I am well into treatment (32 weeks for Geno 1A), and while it very unplesant, I feel it is worth it.

I see no downside at all to at least trying 4 weeks (to see if you are rapid responder), 3 months if you can tolerate it. You can make a better decision then.

No-one can tell you how you will react, or how it will be, for you. So why not try for a short period, and see if you respond positively? You can make an informed decision then.

[Terrylee8]

My biopsy was a non event.  No adverse reactions.  I recently had an infection and took pain pills for a couple of days and things did get easier.  It's hard to say with the inereferon.  It's a real **** shoot as to what will happen to you.  So far I'm OK with it but there are people like Bobbyullc and Frank J Perrotta who tell a different story.  I have read about many others with the same feelings as them post tx.  I decided to treat and if things were really awful I was going to quit right away.  Nothing happened for 6 weeks and then I had extreme fatique and chemo brain.  As of week 20, I'm back to nothing is happening and I feel normal.  It's strange brew!

[Frank J. Perrotta]

I would not treat if I could make the decision again. Worse decision in my life to treat. In better than perfect health before treatment and now two years after treatment going thru hell every minute of every day.

My new doc believes I was incorrectly treated as well. If your docs are giving you the option to wait that is what I would do. Ask what their schedule for future tests would be and go with that. If you condition changes for the worse then make another decision then. If there is no change then wait.

good luck,
frank

[fooledagain]

Oh yeah, after my biopsy, I've had pains, yes actual pains in my liver. Is that something that's common?

[fooledagain]

My Dr said that it was possible for me to wait if I wanted to but as a Dr she suggested tx. I take oxycodone (pure) for nerve damage in my knee, so I've heard that painkillers lessen the flu-like symtoms. Still I'm torn, part afraid and part wanting to get it over with.

[bobbyullc]

sorry but my fatigue is from the TX not the hep c.

[bobbyullc]

personally i would never tx again and i was svr. my memory i shot, i have fatigue and wasted a year of my life, and now more, on this tx.
i really believe much less toxic and shorter tx is almost here. as a geno 1 with a 50% shot why do it? even if you clear it will not be untill the new tx is here.  

[Terrylee8]

I have the same numbers as you, 1a, stage 2/2, HCV 38 years.  I pondered the decision for a year and I finally decided to treat based on the many recomendations by my Dr's.  I just took shot 21 and the tx is doable.  I don't work and I take Prozac so I think that these are big factors in my TX. Last 2 weeks have been no sides and the 2 weeks before that were hard.  The interferon has a mind of it's own and you never know what it's going to do.  I'm glad I did it because I am doing something for my health and I cleared at 8 weeks. At least I can feel that I have beat the virus for the time being and maybe forever.  My mind is at peace.

[zooz333]

I have the exact same problem??to tx or not to tx....I think the best one to decide this is your hepatologist. see the extent of liver damage and based on that the urgency of treatment will be decided. meanwhile, there are tons of supplements that can take away any hep c related symptoms like fatigue...etc... Milk thistle is one and really helped me out. there's a chinese medicine called DDB it's excellent, try ecanachea extract to boost your immune system and help it fight the virus on it's own, however you must realize that dispite all the symptoms being gone the virus is still there and is still actively damaging your liver, slowly but surely like they say. tx is a must eventually but when is up to your liver condition...all the best