Should I treat?? Advice please

[miss moneypenny]

hello,

this is my first posting here + hope you don

[cuteus]

what do YOU  want? Do you feel comfortable cohabitating with HCV and monitoring the liver damage progression every three yrs or do you want this thing out of your life for good? Some will tell you that new drugs are coming soon, hopefully they are right, but once the drugs go out into a larger amount of subjects with more individual conditions, unforseen adverse effects might come to light and halt the trials.  
If you have good insurance, a job that does not require extreme concentration and reliance on memory, and want to get rid of the virus, try the tx. You don't know how the meds will affect you until you take them. Most sides are temporary.
We can only give you our personal reasons and experience with hcv and tx; so here is mine, female, 51 at time of dx, low damage and low vl, did have extrahepatic symptoms, good insurance, I decided to tx. Sides came and went, but mostly went and after tx, stayed gone. 10 months post tx, pcr is still negative after doing Pegasys/copeg combo. I am happy HCV free, I can't say I would be if I was still + because I decided to wait. I would still be waiting...
Good luck to you

[fishdoc]

I have to agree with cutues, I have waited since 1994 to treat, two biopsys, pcr, lots and lots of blood drawn. I was on a similar website back in 96, but realized my condition was consuming my life.  I backed off, fulfilled some life goals, but I am now ready to opt for a better quality of life.  Am I seriously worried about the side effects?  Absolutely, I am moving into a new position with a lot of supervisory stuff and travel, but I am tired, both figuratively and literally of riding life on the HepC highway, I am ready for a different road!  You can worry now and treat later, or treat now, and hopefully not worry later..........best of luck,

[jmjm530]

I agree with your heptologist. Adopt a strategy of watchful waiting with periodic alt checks and a biopsy in five years. The only thing I'd add to the equation is a yearly Fibrosure test and/or a Fibroscan test when and if Fibroscan becomes readily available in this country.

Even if the researchers are wrong about the new drugs coming soon, i.e. 2-3 years, in all probability you still have many, many years before experiencing significant damage. In fact, given your sex, age, fibrosis level and estimated date of infection, you may never need to treat -- especially with the current drugs.

Some will tell you that it's not just your liver but your whole body that is infected. There may be some truth to this but I'd like to see some more studies. Truth is this is a very slowing moving disease for most and many never need to be treated. What I will tell you is that the current treatmen (peg interferon and ribavirin) are extremely powerful drugs with many side effects, some of which may be permanent.

As someone with no liver damage, who seems in relatively good health, why risk subjecting yourself to these drugs unless you have to. Especially when the race is full-on for newer, better drugs, with the finish line hopefully just around the corner.

Welcome to the discussion group and whatever you decide, the people here will support you.

-- Jim

[jmjm530]

I'll also add that your heptologist's advice is consistent with most treatment guidelines I've seen for Fibrosis levels 0 and 1.

BTW nice name.

-- Jim. Jim Bond. :)

[NYgirl]

You know honestly if I had your number I wouldn't treat.  I am sure that my doctors would not have me either.

I'm sure I wouldn't want to keep this disease but...I would wait and see rather than take the toxic drugs - I'd wait probably to see what came down the pike since I had so little or no damage.

It's such a slow thing that if you don't drink or abuse your liver (like some of us have unfortunately done) you could be fine for a long long long time or never get any symptoms as Mr. Bond said.

It's YOUR decision though.  We are here no matter what you decide.

Debby Debby Goldfinger

[NYgirl]

Scratch that - Debby, Debby Galore.  ;-)

[jmjm530]

I'll take that shaken, not stirred. :)

Jim B.

[cquest]

Welcome to the forum! Many different opinions in here so take them all with a grain of salt (or sugar if your prefer)!

I am in a similar boat...I decided not to tx...have to keep my wits due to work and new puppy...double edged sword I guess, don't tx, have this stuff in my body, tx and have other issues instead...I have the choice right now and I decided to hold off a while.

Good luck to you and do your research before you decide! Don't rush into anything! I think the initial shock of knowing you have this has to settle in a while...take your time and the right decision will come to you. Again, welcome!

Cin

[NYgirl]

Mr. Bond,

You know that is how I love my "cocktail" as well ;-)

Shake the redipen back and forth back and forth, back and forth till the pwowder dissolves.........................................

[scruffy]

I treated and relapsed and must decide whether to treat again or wait. Not an easy decision you need to make. The thing is that I agree with all of the above posts. Both to treat now and to wait. Whatever the decision we will be interested and try to be supportive. frank

[LvdByGod]

one of the benefits of treating early is that you'll have better odds of clearing with less liver damage and at a younger age...type 1's can have a harder time clearing the virus and any advantage is a "good thing"...(i sound like martha stewart)

but, that being said, you should be safe waiting a bit, esp. if montitored regularly. you may deside to wait to start treatment especially if you have a good reason to wait like young babies or some big challage coming up.

the virus can cause other problems though besides just cirhosis...if i were you i would do alot of thinking and studing up on all the pros and cons...some here have good articles on what hep c can do besides just liver problems...(i think cuteus would have info on these).

you certainly have time to do some good research before making a desision on whether to wait or not...i pray for God to help you make a great decision!!! and congradulations on having little damage...that's such good news for someone with hepc.

sandi

[MichaelT]

Thankfully there is no urgency to decide now!

Monitoring ALT/AST numbers is kinda', sorta', not a very accurate means of tracking damage. Hence Agent 007's advice to have periodic Fibrosure/scan tests. Should you delay treatment, convince the doc to incorporate this.

The other hand. I've been around long enough to know that the new drug "just around the corner" will eventually get here, but will break your heart if you count on it being here soon. Age is a factor in treatment success.

Personally, I would take a couple of years of monitoring and see how I feel - current treatment can be really hard on some people and if something better is available, well, then, great!

As a general rule, hepc is very aggressive. Curiously, some people die at an old age having this disease most of their lives - go figure. Don't drink, smoke, or do cocaine (or drive too fast, skydive, eat raw eggs, or vote Democrat...), eat well and take care of yourself! God bless!  -Michael

[cuteus]

here is an article of many that mentions age as a predictor for svr. It is sponsored by Roche as many of these HCV articles are sponsored by one drug co or another.
http://www.prnewswire.co.uk/cgi/news/release?id=143867


for those looking for studies and articles on how hcv affects other systems in the body, not just the liver, there are many:
http://www.hepnet.com/hkn/c21.html
http://www.medicinenet.com/hepatitis_c/page4.htm
http://www.blackwell-synergy.com/links/doi/10.1046%2Fj.1365-2893.1997.00120.x?cookieSet=1

if more is needed, a web search for "extrahepatic  manifestations will give you as many articles as you can read.

[honey11]

Looks like you are in great shape and yes,,,,you do have plenty of time and only monitor if you choose.  My only hold back on that is,,,,,several at stage 1 have held off and then all of the sudden moved to another stage so there is just no telling.  You are young and would clear most definitely and then no worries about hep so that is something to ponder.  Also,,,as long as you have hep c,,,,you do have to be cautious about passing to someone. Chances are slim of passing just day to day living with spouse, family etc but there again,,,,You have to be careful.  You have alot to consider in your decision and I wish you the best of luck.  One thing that you can be very thankful for,,,is you are sitting in the spot that everyone wants and have time to make your decision.  Not everyone has that leisure...Best Wishes!

[Tonyz]

I would like to welcome you to the forum.

<font size="3" color="red">WELCOME</font>



<font size="2" color="blue">You will find several different opinions....   Just keep in mind thats what they are :-)

I would agree with what cquest had to say...
You did find a great resource here to help in your decision making.


                 God Bless


                   TonyZ</font>

[friole]

Hard decision.  I was a little older than you (about 46) when I was told I tested positive for the C antibodies.  I did nothing until this year - at age 57.  My biopsy is similar to yours now - grade 1, stage 1 -- yours may be grade 1, stage 0 -- and I did decide to treat now but much of my decision was based on age and insurance.  I don't think I have been symptomatic - guess I will see when I am cured if I feel peppier.  I did not feel I was in a position to treat then with 3 teens and beginning menopuase - and the drugs were god awful back then.  They are much better now.

Even tho I only progressed to grade 1, stage 1 with 35 years infection, that does not indicate what your case will be.  This wicked disease hits everyone differently.  I guess the best thing is to just read lots of posts to help you decide .  I used two sheets of paper - one titled "reasons to treat" and one titled "reasons to not treat."  That helped me.

Best luck on our hard decision.
Kathy

[miss moneypenny]

Wow, thank you all so much for your responses, I am overwhelmed at the concern and support. I have just been keeping this virus in a separate box from the rest of my life, and haven't really spoken about it to anyone, so it is amazing to speak to people who understand.

I guess you are all right, and really I have to make the decision. My situation is I have 3 young children, a puppy, 2 horses and some fish(!!) so things would fall apart pretty quick if I was out of action, this greatly affects my thinking regarding treatment. Especially as my family are in another part of the country. My biggest worry would be that I may not be able to drive - I live in a rural area so would be really stuck.

I was interested to read that type 1's with a low VL may be able to treat for 24 weeks - if clear 4 weeks into treatment, but I am very scared of the tx. I don't smoke, haven't drunk since found out, although only a light drinker before, eat well etc etc - so hope this will keep things ticking over.

thanks again to all of you - it means a lot

[nor cal mom]

Good luck on #12 What day is your blood draw? I want to keep you in my positive energy space at that time. There are so many of us here and (not here)with this terrible disease  I love the positive support & info. We all need this now. PEACE & LOVE DARCY

[jmjm530]

Money said prev: "I was interested to read that type 1's with a low VL may be able to treat for 24 weeks - if clear 4 weeks into treatment"
---------------------

Yes, indeed, and you fall well below the threshold for low viral load. One strategy then might be to risk 4-weeks of treatment and run your PCR. If it comes out non-detectible, then treat for another twenty weeks and be done. If it comes out dectible, then quit to fight another day, keeping your losses small. In this scenario, I'd probably use whatever Pegalayted Inteferon the study was based on.

That said, 24 weeks can still be a very long time on these drugs, at least for many of us. Given your rural situation -- should you decide to treat -- you will really need to give a lot of thought to back up plans in case the treatment incapacitated you to the point of not being able to drive around the kids, etc. Many people work and live normal lives through treatment, and other are unable to work and have to significantly modify their lives while being treated.

Whatever you decide, take your time and once you decide, don't look back only forward. The right decision is the right decision for you.

-- Jim

[Forseegood]

Hi, this is only my two cents, you'll get quarters here! This is a big cr**p shoot either way for someone like you, with great reasons to treat and to "watchfully" wait. I do have symptoms (mixed with menopause) so that's why I'm on the fence,(I have stage 1 damage) but with someone like you with no symptoms and such great stats, your age, I'd wait.

One thing I hate to bring up - because so many people have treated, are treating or about to treat - they just don't know the full extent of the damage the actual "meds" can do, even if you do achieve SVR...over the long term. And we're talking about a 50% chance of clearance for a geno 1. These meds haven't been around that long. So the body manages to "right" itself after treatment...how long will that last? Especially for the geno 1s having to take them for a full year or longer? (It just stands to reason the longer you take them the more potential for bodily damage that "might" manifest later on, one would think.) Have the meds themselves caused damage that being an older age would manifest? Believe me, these are questions that many of us don't really address because what's the point if we have to take the drugs anyway, it's always best to be positive...I'm just not sure you have to.

It's also a question of windows of opportunity. If you were older now your window would be smaller, but you're relatively young. And of course the flip-side of that is that you have a greater chance of clearing the younger your immune system is. Add to that the question of these new less harsh drugs and when they are coming on the scene, they'll be available a lot sooner if you manage to get on a trial... So welcome to "The Great Dillema" we low to no damage people have to face.

In terms of low bx grades...a lot of this will depend on who you talk to as well. The people who are happy and cleared and have gone on with their lives as usual will tend to be much more protreatment... obviously. Whereas others who have been negatively affected by the drugs and haven't even cleared will tend to be a little less encouraging about them, after all, they could of waited.

Some of this will depend on yourself of course...are you the type who will be able to withstand the worrying that is inherent in the "watchful waiting" course? Can you be relatively "serene" about it all over the long term? Or would you feel much better about the decision of just going ahead and treating and getting it over with? How tolerant will you be of the discomfort that will "probably" come about in undergoing treatment? Let's be honest here, many people experience side effects, some pretty harsh, though there are some who report they were negligible and many say they were doable.

You can at least afford to ask yourself these questions beforehand, others who are at higher biopsy grades unfortunately don't have the luxury. As has been said, you will get a lot of support and experience here, good luck in whatever you decide. Just one woman's opinion.

[new-sojourn]

All I can add is:  you are in a good position to tx.  You don't know what kind of insurance you will have in the future or whethter you can get insurnace in the future w/the hep c.  You also will never know how much it effects you until are rid of the virus.

People who were infected @ birth and have never done drink/drugs are @ very advanced stages.  A friend who did not treat b/transplanted went from new perfect liver to a stage 3 in less than 10 mo.  Many women who have waited and watched found their damage went thru 2 or more grades/stages in a matter of yrs.

And anyone who is infected now and doesn't think the virus and its presenting symptoms and accompaning damage isn't impacting their general well being and overall mental, emotional and physical health is an idiot!

Beleive me, I too thought that I had no 'symptoms', and I was end stage.  B/being 3yrs svr, I can't believe the differece.  It seemed for a yr or so, all my old wounds-broken bones, etc-rehealed.  I actually became the person I always knew I was.  The emotional and mental benefits and stability and serenity almost out weigh the physical benefits.

Would you let your child live w/a progressive, fatal disease b/c curing it would not fit in w/your lifestyle-that's all that's holding you back-percieved changes in your current lifestyle.

And Teenagers are much harder than small ones.  And much less sympathetic than younger ones. So tx won't be any easier when you are really sick and the kids are older.

[jmjm530]

Forsee said prev: "These meds haven't been around that long. So the body manages to "right" itself after treatment...how long will that last? Especially for the geno 1s having to take them for a full year or longer?... Have the meds themselves caused damage...  Believe me, these are questions that many of us don't really address because what's the point if we have to take the drugs anyway..., it's always best to be positive...I'm just not sure you have to.
=======================================

Funny because I had this same discussion with myself this morning as I indulging in a little self-pity reflecting on what treatment has done to me this past six months. Being run over by a truck is a good analogy.:) But as stage 2-3 I'm at peace with my decision whatever happens. After a lot of thought and years of delay it seemed "time" to treat regardless of the risks. But frankly, I just can't see how all these drugs in my system cannot leave some sort of long-term scar. I truly hope I am 100% wrong.

MoneyPenney -- Forseegood says it very well. Take your time and get real comfortable with your decision because it does have ramifications either way.

-- Jim

[friole]

I will probably have my blood draw on the morning of the 7th - that will be exactly 12 wks peg & copeg.  The 4-week PCR took almost 2 weeks to get back (boo).  Hope I do as well as you.
Kathy

[Forseegood]

aaaah...don't know for sure but I think I just might of been called an idiot, ha ha! No worries. For every person who says they know someone who progressed rapidly in stages within a small amount of time, there is another person who knows many who are in their late 50s and 60's with low liver damage. I know I do. Some have treated and not responded, some never have treated. That's just the name of the game with this disease, it's a l l over the map. We have to rely on these small studies for statistics to get any grasp of consequences, trends, variables, etc.

Believe me, if I were assured of having even and 80% chance of clearing, I'd jump on it like a monkey. Otherwise, there are many, many factors to weigh, I believe I went into it "ad nauseum" in my last post. And being a woman, my odds are better at lasting this out till the better meds come along. There is also some evidence that being a stage 1 at my age of 52 might mean that my immune system is doing a good job of keeping the virus in tow. I also take darn good care of my immune system, and I have for a very long time. That's gotta count for something, considering the new studies about anti-oxidant use and the immune system, I'll post the URLs later, it was on the AP yesterday.

Unfortunately, there is also some evidence that a person having it at birth was, by virtue of that fact, born with an immune system that was somewhat compromised by the virus. That may or maynot have some impact on the long term outcome.

This is not to say that I am not treating, depends on a few things. But like I said, I'm older than the person in question and I do have a few symptoms. Ultimately we are all masters of our own ship. My heart goes out to all who suffer with this disease, let's hope that soon we have more options available to us all, and that we all hold together as a community to help one another, we're not getting a lot of help from the outside, maybe you've noticed. Peace and love to you all.