To treat or not to treat? That is not the question.

[fretboard]

I've been a member of this forum for a few months now and what I have learned is all good and I couldn't have learned it from anywhere else.  As far as HepC goes, this is the only forum of which I participate in, most of the posts on this site are pro-treatment and I think that's what initially attracted me to this forum.  Even though it's a pro-tx forum there are some posters who say to treat, however wait until you are having some symptoms.  I wish I had their exact words, but it's really not that important as I think it's obvious.  I am waiting for a clinical trial but I'm having to wait as I have mitigating circumstances concerning prescription meds, so I will be seeing my GI in early July and getting my bloods and an ultrasound done, minimum.  I am also pro-treatment, with all these issues associated with the HepC tx, I am geno 1, so it seems like the genotype with the extra aggressive tx, if there is such a thing.  HepC is such an enigma of a virus and tx often affects, teeth, skin, nerve damage, arthritis, fibro, riba rash, anger the list goes on and I don't want to continue about the bad things that may or may not happen to anyone if they go through tx.  No doubt that HepC is a tenacious bugger and the tx sometimes very difficult, but dang it seems even worse for geno 1's being the longest to tx.  Here's my question, If you choose treatment, is there any indicators that can tell you in advance to get off of treatment as it may cause you a myriad of other ailments and/ or permanent disabilities?  I've read of some heppers who have gone through tx and a couple who even wish they wouldn't have, that's why I ask this question.  I guess it really goes out to the ppl who have had major complications with their tx and have even gotten worse as a result of tx, but of course anyone with an opinion can answer.  Be kind as I'm just looking for an answer, I don't care how good the doctor is he can't feel what you're feeling during tx so my feeling is you really have to stay focused and don't just think your doctor is some God as some of them think they are, they're only human.  I don't know, that's why I'm asking.  I want to have a clue prior to treating as I feel that if I go through anything adverse, I would get off of treatment, but at the same time I don't want to be overly cautious.  God Bless  

[Bobby1952]

   What is the question ????

[Bobby1952]

   Sorry I answered the wrong post.

[Trish77]

"Even though it's a pro-tx forum there are some posters who say to treat, however wait until you are having some symptoms."

Hi fret, I just want to address this one tiny line in your post.  I want to clarify that those who advocate waiting don't advocate waiting until you have symptoms but waiting until your biopsy and your CBC's etc show that you're progressing in damage.  Symptoms aren't a good measuring stick to go on as you can have NO symptoms and still have progressed liver damage.

Where symptoms come into play, to me, is when you're starting to get other illnesses that are potentially from you carrying this nasty HCV virus in your blood long enough for it to start doing damage to other systems and creating other health issues.  One of the reasons I chose to treat now is that I'm 47 and I ain't getting any younger.. and I'm disgustingly healthy in every other way.  So before that changes, I wanted to get at it.  

As for your question.....weighing out the risks of what the treatment drugs can potentially do to your system....I thought about that myself.  Only in my case, because I have always had this great constitution and have been in reasonably good shape healthwise from running, the risks were not as great as others who had to balance a number of health issues.  The risk for me was creating health issues were before I had none.  I'm kinda counting on my good fortune at being in this kind of shape to begin with to get me through that along with careful monitoring of labs all the way through too.  

So at that.. I'll leave it to others who had greater considerations to take into account that can speak more to where you're at.

It's a good question, fret.  

Trish

[meki]

"Here's my question, If you choose treatment, is there any indicators that can tell you in advance to get off of treatment as it may cause you a myriad of other ailments and/ or permanent disabilities? "


Fret...

Hmmmm...

OK - let me try to clearly state this --- and note that it is only my experience and my opinion... alright?

I don't think you can possibly know what is going to happen to YOU... Until YOU go through it.

Some people cake walk through this treatment.

Others respond viciously.

Some fall in-between.

Just like the viral response: Some pass, some fail, some improve or have to repeat.

I think each person will respond differently --- and some of it has to do with just "how much you can take"... In response to the side effects.

There are some side effects you just cannot ignore.

Those would be: Breathing problems, swelling problems, circulation problems and mental health issues.

Some people on this TX cannot handle it mentally... They don't even know that they are falling apart - which is why I am TOTALLY advise for people to keep a journal DAILY of feelings and sides... because the mental part can creep up on you - and you don't even notice it... It's an insiduous feeling.

And I don't know if ANYONE else will admit it - but I can tell you - there were some very brief flashes of depression for me --- which if I hadn't been such a happy-go-lucky person naturally --- I could see where someone else might have climbed a 20 story building and jumped.

So - you have to be MENTALLY prepared for this TX.

If you can get through the grueling side effects ---- and you're mentally prepared for TX --- then you can handle it.

I'll be very honest - you've got a leg up on most people. When I first started TX - I didn't have a clue about the disease - nor about the TX... I was -- here take this --- people might feel a little tired, but that's it...

Ha ha the freak ha...

I had moderately severe side effects.

I fell in the OMG -- WHAT THE HECK group... LOL!

I'm surprised I kept my job - I'm surprised I made it all the way through...

I didn't have advance warning of the total knock out on this treatment... Didn't have a CLUE that it could happen.

So when it did - I was flabbergasted - but couldn't do anything about it.

I mean totally shocked.

In fact - my boss was the one who said --- I think that this is a serious treatment - you might want to sign up for FMLA ahead of time.

Thank Goodness he did too!

Cause I needed that FMLA stuff.

But --- I think if I had been mentally prepared - it might have been a bit better.

Not that the sides wouldn't have happened --- but I would have known more of what to do - and I wouldn't have freaked out as much.

Being alone in this TX is hard. Even though I have a very caring and supportive family and network of friends --- I felt as though I was doing this alone... and no one -- but someone who has or is going through it --- can understand.

So --- should you do a TX?

That is entirely up to you.

I am PRO Treatment...

But if you asked me --- would I do it again if I had not cleared?

Probably NOT.

I think treating - or trying to treat is VERY important --- if you want to kill the virus.

If the virus is killing you - then --- probably your answer is going to be: Yes.

Will there be new cures coming along?

That part I don't know.

I don't exactly trust the medical community - not necessarily the doctors... mostly the pharmaceutical companies... anymore.

I've learned that they don't disclose everything.

And I've been saddened to learn that even the BEST doctor's don't know everything... Life was a lot easier when I believed that doctors could cure everything and were Gods.

Now, I know they are human, just like the rest of us.

So - you have to gather your own information - you have to flip your own coins and make your own choices.

Whether or not it will cause permanent damage... NO ONE can tell you that.

But the sides can be rough - and they can feel like they are permanent.

I have probably permanent Neuropathy (extreme pain from nerves that I thought was arthritis in all my bones, muscles, etc... which IS probably Fibromyalgia... but we're waiting for a couple more months) now from TX and HCV... But no one can tell me if it's from one or the other.

So - besides the detrimental side effects (breathing issues, circulation issues and mental issues) if you can hang out and do the entire TX --- then YOU can do the TX...

Will there be residual effects?

I don't know... each person is different.

Some clear it all completely and run on with their lives.

Some are changed physically and suffer -- like Frank J. Perotta.

Some are changed mentally and get divorced or live differently...

Some are changed all over --- and have a new view on life --- either positive or negative.

YOU will be changed - that much I know.

But which way YOUR pendulum swings is entirely up to your genetics, your mental capability - your health and your emotional state.

So fret --- I dunno if I answered your question(s)...

But I tried to lay it on the line for you.

I'm sending you lotsa love and hugs... No matter what you decide - this forum is here for you.

Meki

[meki]

Holy Toledo that was long. I'm so very sorry --- hope you had a gigantic cup of coffee before you started that one. LMAO!

And Trish is Right... Don't wait for Symptoms... Damage and SIGNS...

Symptoms are what someone tells you that you are feeling
Signs are what can be seen medically or visually (microscopic slides of the liver qualify for signs... LOL!)

[foofighter]

I just ranted a bit on another When to Treat post about doc's staging you correctly, maybe you want to read that one...maybe not : )

I seem to recall some medpub (posted here) about blood tests that can indicate whether you are more likely to respond to therapy. Genetic response to interferon. Or am I dreaming? Does anybody remember that? It might have been test tube stage or something though. I guess even if I ended up with permanent damage from treatment, if I knew I had a good shot at SVR and it kept me from croaking, I would rather deal with the QOL issues.

If my HCV wasn't bothersome, and I knew it wasn't gonna kill me for a long while e.g. 0-1, personally I would risk waiting a few more years to see what happens with the new stuff. And believe it or not, I am saying that as I am all worked up wishing I had started treatment a couple of years ago. Hindsight is a b*tch.

Foo

[fretboard]

All of you ladies are alot younger than I am and due to my unfortunate high risks lifestyle I can say without a doubt that I am very unhealthy in the sense that I have blood flow problems as in very bad veins.  I really don't like going into that area however I do have symptoms otherwise I wouldn't have even considered treatment.  Sure it's a personal decision, but I have to look at this realistically (sic).  I am 54 and I have high cholesterol and I've had it for years.  I can't get a doctor to prescribe me anything for that.  I also have advanced osteoarthritis so if I treat which I will, best for me to do it now.  With all that in mind, if you remember what was posted (foofighter), please get back to me.  If there are some blood test that could determine how you would respond to tx I would certainly like to know about it however, that wouldn't sway my position to tx.  I gotta give it the old college try as I have a young son to think about and I'd like to see how he turns out.  Anyways, if anyone else cares to respond to the question, that would be great.  I know it's not an easy one especially for someone like Trish who has fortunately done very well to be UND at 6 weeks with minimal sx's, or I'll say she doesn't seem to be doing too bad.  Good going Trish!!  Meki seems so positive, however I know that she has her share of concerns as well.  Anyways, HepC is sooo hard to put a face on so to speak, but in hindsight anyone have any theories on my question?  I know it can't be a definite, "same thing will happen to me situation", but someone must have a theory of when things went haywire for them.  Whether it's low platlets, or low white count, maybe those two things are the same, I don't know.  Anyways, God Bless you all  

[HectorSF]

I think Meki pretty much said about everything there is to say. Go Meki!!!
The only things I would add...

* Get the best, experienced in HCV doctor possible. You will need them to work with you on your journey through treatment, interpret test results, and to deal with any medical issues, insurance, disability issues that may arise during treatment. You want someone to support and back up when you may not be feeling well.

* Get all the data in front of you...
genotype, viral load, biopsy results, other heath issues, etc....
And try to figure out your odds of success, realizing of course everyone responds differently to treatment for good and for bad.

But as Meki says you don't really know what is going to happen until you treat.
If you are worried about the duration of the treatment and the possible permanent medical impact treatment can have on your body - by measuring your viral load response over the first 12 weeks of treatment it will give you and your doctor a very good idea what your chances of SVR are. If you are not responding to therapy you can make the decision to stop and possibly retreatment when new meds come to market.

It's a very personal decision. You must make your choices and take responsibility for them. Remember like life; there are no guarantees. But is you don't risk you will never know what could have been.

I wish you all the best in deciding what is right for you.
Hector

[Trinity4]

I just want to add that I became a bit preoccupied with the fact that I had the disease initially and didn't focus too much on the sx.  I was like no, this can't be, why me.  So, I figured being a stage 3 better start tx ASAP cause what do I have to lose.  10 weeks into tx and it's starting to kick my butt.  Fatigue is a big thing with me and have kept low grade fevers throughout.  Bones hurt more than they used to and just getting through my work day is a victory for me.  Maybe because I didn't focus too much on what might happen I've been able to deal with it as it presents itself.  If I had known then what I know now would I'd have done it!!!  Absolutely.  Of course I want to beat this thing and maybe I'll get lucky (1A) or maybe not but because there is that percentage I may clear the virus and my life will be prolonged allows me to push forward.  I'll deal with fallout if and when the time comes - so far I consider myself one of the lucky ones just by the shear fact I am still able to treat.  I've had the low platelets and the low white blood cells but someone is looking out for me because they came back up and I didn't get pulled off.  Good Luck and wish you the best whatever you decide.
Trin

[Trish77]

If you don't mind me asking, why won't a doc prescribe you anything for high cholesterol?

Trish

[Effiedanna]

I also am 53 with Hep C geno type 1a which is the hardest to eradicate. I look at all the positives i had going for me when my doctor asked if i wanted to treat. First of all the positives were i am female, my LFT were all normal, my biopsy was stage 0-2 with very little scare tissue but definately inflammed because of the Hep C, and very healthy. The negatives that my doctor pointed out was my age 53 and he said the side effects could me bad. I started treatment 8 weeks ago my first shot was hell but since i can say i haven't had hardly any side effects i take 180 mcg of interferon 1x a week, the Riba is a tad different i take 600mg 2x a day i have lost some weight not much 8lbs, i have the famous rash all over but it bothers me more on my head, I have a problem sleeping at nite but really all of these side effects are minor compared to what this virus could do to me if i didn't try. I am a full time student and work full time it was a tad hard the first 4 weeks because your body and the virus r fighting each other so you get tired but over all i feel i am doing good. My first blood test showed a drop in my ALT, AST, And my VL dropped fron 1,450,000 to 220,000 it wasn't quite a log but i am incouraged. I have found out by research and this site that the liver metabolizes every thing and its where cholesteral is produced so maybe if your liver gets in better shape some of your other health issues would get in check. I do believe that doing treatment before their is much damage and your in relatively good health makes it easier to handly the side effects. Good luck on whatever decision you make. Effie

[working dog]

i've been reading posts here for a year and a half...i'm geno 1a s1to 2...g 2...vl about 5.5 mil...i am waiting for better tx...but if i had the time and the money for tx i would go ahead and tx...i think if your stressed out too much trying to get tx then maybe wait..i think the stress thing is something to weigh out...and could affect your outcome...i've seen a lot of folks here stressed out over payments and that can't be good...although it also depends on your stage and grade...my sx do bug me...i beleive i got this from my x and she tx 5 years ago and did fine...so if there are different types of geno 1a's and i have the exact same virus as she had then i feel i might have a better chance of making it through tx..good luck....billy

[Andiamo1]

I entered the Prove 3 trial with all the stats against me.  So far, it looks like it paid off.

As others have said no one can predict how difficult treatment will be. But having a good hepatologist treating you will certainly improve the odds of picking up bad side effects quickly and dealing with them.  Although the drugs for SOC haven't changed recently, the rescue drugs have.

Most docs prescribe anti depressants prophylacticly now and that greatly reduces the mental side effects.  The most important decision is choosing the doctor.

Good luck  

[HARRYBEADS]

  To one 1a'er to another
  As long as you go in in good health and follow directions perscribed to you and your situation, your risk of any long term adverse condition is minimal. You get blood tests every two weeks that monitor our basic functions so if'n something shows up the Docs will stop treatment or adjust it like they did with me.
  Diabetics have problems, so do people with kidney disease, mental health problems,hemopheliacs and the list goes on but Doctors will monitor issues and adjust things to your benefit with the knowledge that we as patience have given them. 80% will clear the virus in the first four weeks of conventional therapy, the trick is keeping it undetectable! Killing this bugger has it's risks but not as bad as the risks we took when we got this thing.
  I have been left with some neuroligical issues, possibly MS,at least fried circiuts in the lower body, my wife says up stairs to but thats another issue. But I was having some pain before treatment that lead to the Hep diagnosis so who's to say the treatment did it or was it the Hep or just payin the piper.
  I hope your payed up.

Harry

[eureka254]

My husband is currently scheduled to start treatment July 29th, and we had a long meeting with the hepatologist a couple of weeks ago, and one of the discussions was exactly the question you asked.  I wish there WAS a definite answer given, but alas, no.  We were told that there is no "predictor" of what sx will affect whom, but the doc certainly explored concerning "predispositions", if you will.

The doc asked extensive questions about whether or not there was a history of depression, suicide, etc. (Since my husband is a combat veteran, the doc was very thorough on this count.)  He also queried carefully about any previous history of any auto-immune disease(s).  We were informed that the most common reason people don't complete treatment were side effects of depression (in his experience, anyway).  

Basically, the doc said start treatment, and if the side effects become too difficult (or contraindicated -- my husband has hx of cancer, cirrhoisis, and cardiac disease), treatment would stop.  As a geno 1, my husband has been told 48-72 weeks, but as far as the sx, it's sorta "cross that bridge (if and) when we get to it."  Hepatitis roulette gives russian roulette a run for its money, eh?  The hope is to stay in the game long enough to win -- if we don't run outta chips first...

Best wishes,
eureka

[comeagain]

To be or not to be that is the question!

Atleast for those of us who have reached a certain age, certain grade of fibroses, certain amount of relapses.

I´ve heard that it normaly takes about 30 years to develop and determen the efficacy of a new drug
this drug has been out for 10 years I dont have the time to wait 20 more years the doctors probebly have, rather then being sued for overdosing.

I dont now if i can settle for tx with only 50 or less% chanses of succes.

Were do you stand? Find that out listen to what others have done, were they succesful or not. Why were they succesful did they gamble hard was it stupid in your opnion or would you have done the same.

I´m gonna talk about five people on this forum that I know about and try to give their brief latest tx story.

I´m gonna begin with andiamo, miked and susan400 one succes one probebly succes and one not so succesful so far.
All this persons participated in vertex telaprevir prove 3 trial. Miked who was a partial responder geno 1b  faild  first tx 3years before trial. RVR 2weeks UND in studie, now SVR.

Andiamo geno 1a did his 8 treatment in the studie RVR 2weeks UND, now 8 weeks post still UND.

Susan400 did her 8th or maybe 9th treatment in studie got placebo instead of riba relapsed and now possible resistent to all such meds as telaprevir and its relativs.

All of them took the risk of ending up as susan, would you have taken such a risk fret?

Now Im gonna talk about two geno 3s both relapser flguy and gauf,
flguy pretreated with riba and doubledosed peg for 4weeks RVR week 2 UND in soc now SVR .
gauf treating third time using supplemenst recomended by HR before and some still on tx I think.
Doubledosing  peg and also (not sure here) higher ribadose then requested.
dont think gaufs doc knows his true doses correct me if I`m wrong .
gauf has just started we hope for early RVR because I see a red string here 2w UND

So bottomline to stay in the box or not stay in the box thats the question !!

Take care  and may the good God protect and lead you!

ca

[susan400]

I've done too many treatments to keep up with and there's probably more in my near future.  Some of them were very difficult, I'm not going to lie about that.  Some of them were not all that bad.  I can tell you that from my own personal experience that the Riba was definitely the biggest problem for the sides for me.  But, physically, all the interferon has affected my white blood cells in that they don't want to get back to normal.  Is that because of the interferon, the Hep C or some other unknown problem???  I have not a clue.  I've had plenty of medical care by two well known research centers, so it's not for lack of expertise.  I had some episodes with the TX side effects me with depression early on, but after awhile, I became able to understand the TX's and their effect on my mood when I was on the TX and was able to handle it fine and I've never been doing the Anti-D thing.  But, everybody is different.  I've learned that when I am having a time where I'm about to quit, I call on my prayer friends and I pray, too and my Lord gets me through it.  My normal life, having nothing to do with the disease and Hep C, has been very hard and I've had to learn how to 'roll w/the punches' as my Dad says.  The normal me rarely cries, maybe something like once a year, & all at once and then, I'm done.  I know that the TX me, might be crying every day, or might be crying every other day...or get mad for no discernable reason and, both my husband and I know that this is the TX. But w/having bridging fibrosis, I feel like I need to keep on actively pursuing whatever becomes available to me until I obtain SVR...or until I'm told by a knowledgeable physician - that's it, no more TX's for you.   Susan

[Vivian948]

Hi,
I was in to the Liver Clinic to discuss treatment and they said that with Genotype 1 you have to wait 24 weeks before you can assess if the treatment is working or not. So you are committed for at least that time.
I have the genotype 1 and am only at stage two after having Hep C for 30 years so have decided not to treat. The success rate with this genotype is only 40%.  I am also a runner and very fit. I do not drink and have been taking milk thistle for over ten years. Ten years ago my enzyme levels shot up so I started taking milk thistle and they have been better than normal since then. I had my first liver biopsy last year and will have another next year. There is no way I am taking treatment unless my disease progressed significantly. My doctor feels that with  my lifestyle and  at the rate things are progressing that I may never need treatment.
I hope your decision to treat is based on a liver biopsy result and not fear.

Vivian (age 51)

[foofighter]

It might have been something similar to this. It sounds like this study is going to provide some interesting info for us all. But how far out is this info? Who can say:

http://www.edc.pitt.edu/virahepc/ancillary.html

See below that led me to the site above:

http://www.ddw.org/wmspage.cfm?parm1=843

http://www.eurekalert.org/pub_releases/2008-05/aga-lds051808.php

Combination Antiviral Therapy Differentially Affects Dendritic Cell Chemokine Receptor and Maturation Marker Expression in Chronic Hepatitis C Infection (Abstract #461)

Researchers have found that current therapy for hepatitis C virus (HCV) differentially affects dendritic cells – the most potent stimulator of T cells. Treatment for HCV, a viral infection affecting the liver, typically involves 48 weeks of combination antiviral therapy. This therapy, which induces flu-like symptoms for patients, successfully combats HCV in only half of the cases.

Working with participants in the Virahep-C study, researchers examined 64 patients with genotype 1 HCV, the most common and hardest to treat strain of the virus. Blood samples were studied from each patient prior to and 24 weeks after undergoing HCV therapy. Investigators studied the frequency of plasmacytoid dendritic cells (pDCs) and myeloid dendritic cells (mDCs) and measured the median fluorescence intensities (MFIs) of chemokine receptors and maturation markers.

Researchers found that pretreatment frequencies of pDC and mDC were significantly lower in HCV patients than normal controls. They also found that some, but not all, inflammatory chemokine receptors and maturation markers were elevated at baseline, in patients compared to normal controls, suggesting incomplete maturation.

In addition, they found that the levels of pDC cells in those who responded to therapy normalized, while non-responders did not. Levels of maturation markers and chemokine receptors also normalized in patients who responded to therapy. Patients with increased pre-treatment pDC migration to chemokines were less likely to respond to therapy.

“If we are able to use DC cells studies to predetermine who will respond to therapy and who will not, we can spare some patients from a long and painful 48 week regimen that is ultimately ineffective. Further, this research tells us that the DC cells may hold the key to finding improved therapy for chronic HCV patients,” said John A. Mengshol, MD, PHD, fellow at the department of gastroenterology and hepatology at the University of Colorado Denver School of Medicine.

[hopeful51]

All of the above posts really do show what a different decision this is for each individual.
Everyones circumstances so different yet so similar in that we all want the same thing.... our health back.
I have decided not to tx again. Tx for me was fairly easy however I relapsed post 6mo.
I 'm 56  & healthy even thoughI am bridging fibrous and have portal hypertension but have good blood flow and show no variscies and liver enzymes are normal.I feel good!!! Right now that is whats important to me.I also take milk thistle and other supplements.
My plan is to wait for new drugs to become available hoping I have time and making the most of the time I have. With our health issue no way to know what is the right or best decision.
What ever you do ....do with gusto
Wishing you well
hopeful51

[Trish77]

To be honest, I think the persons to best answer your questions are those who have the same conditions as you and how it impacted them going through treatment....and your doctors.  If you have doctors who are experienced at treating HCV, then they have treated persons with all different health conditions as well, they understand how the drugs impact those various conditions and understand what the risks are if they have you proceed with treatment.  They can tell you what they'll be watching for as you proceed with treatment.  You can get copies of your labs and follow along and watch the same things they're watching.  

You can also ask your doctors ahead of time what they'll be watching for and what the plan will be if any of the "markers" they're watching for hit a danger zone - does that mean an extra drug into the mix, a dosage reduction, a trip to emerg, what?  And what risks do you face?  You can also ask them what are the chances of those issues flaring up, based on their experience.  Gather as much information as you can about how they treat people with your specific health issues.  

Your docs SHOULD be able to answer those questions, particularly if they plan to treat you with your current health considerations.  Has any of them said you should NOT treat?

In the end....knowledge is power.  The power to make the best decision for yourself possible and to be better prepared to go into treatment knowing what could happen.

Frankly, I think it's been easier for me to deal with treatment because I knew what could happen.  Each time a "side" came up, I would say "well, I knew that could happen" and then just go with the strategy that goes with that side.  

You are Stage 1 or were at your 2005 biopsy, yes?  Depending on what information you gather, you may decide that you want to wait for better drugs that make may potentially make treatment shorter.  It all depends.  For me, the impact of HCV on my life in various ways and the potential impact was such that I wanted to treat sooner than later.

That's all we can do .. is learn as much about our own variables as we can and then, after considering them, go ahead.

I had different variables than you ... but it was still a big decision based on my own variables.  I had to consider the potential impact to my employement status, my abilities as a parent, the potential impact of proceeding on to 72 weeks if it seemed necessary, the impact of the side effects hitting me harder than lesser... and the potential of the treatment giving me health issues that might not go away...like thyroid issues .. when I've been completely healthy in all ways up until now.  

I wish you good luck, fret.

Trish

[eureka254]

I dont now if i can settle for tx with only 50 or less% chanses of succes.
----------------------------------------
I know exactly where you're coming from, ca.  As genotype 1, my husband was told 6 months ago by one of his hep docs he should treat -- with a 40% chance of success, my husband was not at ALL interested -- at the time.  He was finally feeling like his old self after 3 extended hospital stays and said NO way.

The passage of time and circumstances are changing his mind, though.  As a stage 4 just diagnosed last year and starting to learn more from his oncologist and hepatologist about the risks of both HCC and ESLD, he's decided he's going to try treatment -- even thought his chances at cure have been lowered to 25%.  (It's the "gamble" he's willing to take, given that as many as 90% of HCC patients, even those resected, have recurrence within 5 years. )  Sometimes it's not about what you win, but what you can't afford to lose.

eureka

[jmjm530]

In general, there's no way to predict in advance how hard treatment will hit you. Especially what type of side effects/conditions you may be left with after treatment, perhaps permanently.

I was very healthy/fit going into treatment and it hit me very hard. Three years post treatment I still suffer from skin problems and what my doc thinks is an accelerated metabolic syndrome.

As to your cholesterol, unless you perhaps have very advanced liver disease, it's difficult to understand why your doctors will not prescribe cholesterol lowering drugs such as statins. All the hepatologists I've consulted with said that statins were safe to take, HCV or not, as long as your liver enzymes are monitored on a regular basis -- but that's pretty much true with anyone who takes statins. Perhaps the doctors you've spoken to re statins are not liver specialists (hepatologists)? A lot of outdated and outright misinformation about Hep C even in the medical community. My suggestion is to find a good hepatologist before you pass on taking statins, assuming they are medically necessary.

-- Jim

[FlGuy]

There are a number of different approaches to take and to know some of the various angles takes a medical team that's will to discuss and inject a little creativity with the Peg.  An option might be to 'test drive' treatment for maybe 6 weeks or so, to determine viral response, the physical side effects and the effects of the meds on any other conditions that might exist (osteo, platelets, other blood values).  Some docs may be willing to work through some 'non standard' approaches like increasing dosages, other treatment additives (like Alinia), pre-dosing, med schedule alterations. And, to be anticipatory during treatment.  An a geno 1 in your 50's trying to find or create any advantage against the no-so-great odds is worth the time and the effort.  No one wants to go through grueling treatment only to come up empty.  Nothing is assured but if you can find a doc who will use the rulebook only as a guideline and treat you as an individual, you may be able to look the devil in the eye before blinking so quickly.  Finding an astute hepatologist is a good first step.