Who's Doing 'Watchful Waiting?'

I'm just curious about how many among us has decided to postpone treatment and take a "watchful waiting" approch.  I realize that not everyone has the luxury of pursuing this option.  But even in those cases, I'd be interested in knowing if the people in that group would have postponed treatment if they could have.  Moreover, I'm interested in hearing the reasons and rationales behind the decisions.

In my case, as many of you already know, I'm working on one last attempt at pregnancy before purusing treatment.  But even then, if my VL and biopsy results continue to be good, and if I'm not experiencing major symptoms (especially fatigue -- which I have NONE  of now), I wonder if I'll continue to postpone or finally jump into treatment.

Would love to hear your thoughts on this.

Susan

[honey1616]

Susan, I'm glad I started mine just to get the whole thing over.  Now is as good of time as any for me.  My alt and Asp have always been totally normal and only thing I'm worried about is 8 mil vl.  I have never felt bad from hep c so I'm hoping I can clear it since I am not feeling bad but I guess everyone is different.  I can work out of my house which helps also so yeah and honestly its not that bad so far for me.  Its just taking me some adjusting and getting down what works best for me to keep the sides at all time lowest.  Today I feel totally normal. Shot day bad and 2 days after I was weak but just took it easy.  I use to read all the stuff everyone wrote and it was so scary that I didn't think I ever wanted to start.  I have a long road ahead so don't want to jinx my luck either!

[OkieJim]

Hey,
Be happy with your decision. It's fine. A family is the most wonderful thing you could do. I am on TX and would have even if my damage was light. Unfortunatly it was not. I chose to do it because I'm still in good health and stong and felt I have a better chance of getting thru it now than later.

[DownThisRoad]

I started my treatment back in April 03.  I wanted to do the treatment that is offered and give myself a chance to clear this virus.  I am on week 37 and will do 48 weeks of medicine, and then a possible extension of 6 - 8 weeks longer.

My biopsy showed stage 1, grade 2.  I didn't want to take the chance to have further liver tissue damage.

Due to treatment, I am clear of the virus (undetectable).

[dheana]

Sometimes is better to avoid reading what is posted here. Everyone is different so it is hard to put apart your sx from others. You might belive that something you've read about is happening to you. Read only positive things and you will be fine. Ask for hepl when you don't know what's happening and lot of friends will respond to you in a positive maner.

[Tallblonde]

Huh?  I'm sorry, but I don'understand what you're trying to say.

Susan

[GwithHepC]

tallblonde:

I am waiting also.  I am stage/grade 1-2, infected likely 37 years.  My reasons are:

1.  I have genotype 1.
2.  I have mild scarring given length of time of infection (also shocking given the binge drinking I have done as a teen and in my twenties), so I reason I am progressing very slowly which is common for people infected as infants.
3.  I am hoping more effective treatment is available with less side effects in 5 years.  Also. in 5 years my daughter will be 18, so I will be free to treat without worrying about tx affecting my parenting (I am a single parent). (She is infected also, and depending on her biopsy results, we will likely wait to treat her.)
4.  The psychological side effects concern me because I have a history of depression, mood disorders and anxiety attacks.
5.  There are things I want to do in my life right now that I don't want to put on hold for tx; given my age, gender and degree of fibrosis, I reason I can afford to wait for a while and then treat.
6.  I have not read enough about the long-term side effects of ribavarin, and that concerns me.  There seems to be more information about the long-term effects (relative to ribavarin) of interferon.

Only thing that may change my mind is I am having symptoms of fatigue and joint pain, but I am not sure if that is hep c related or not.  However, the biggest symptom of hepatitis c for me has been a realization/appreciation of just how short life is, and a reminder to not take my time here for granted. My treatment for now is concentrating on eating healthier, stress reduction, and focusing on what I really want to do with my life, and ACTUALLY DOING IT.

G

aka, short brunette

[Tallblonde]

I, too, wonder about the long-term impact of an overactive immune system.  I've had five early miscarriages and now I can't help but think that my immune system (due to HCV) is to blame.  

The thing I'm struggling with the most is the "damned if you do, damned if you don't" nature of so many of the decisions related to this disease.  And I fear most of all that I'll never feel completely "normal" again.  My symptoms are mild at this point -- more of a nuisance, than anything else).  But that will change, I'm sure, at some point.  

Oh gosh, I'm starting to catastrophize everything again.  These dark, dreary, cold January days and nights can lead to that type of negative thinking.  I've got to snap out of it.

Thanks for listening..
Susan

[Tallblonde]

You make some good points for waiting.  Thanks for sharing your perspective.

Susan

[dheana]

I just mean that you know better what to do. Discuss with your doctor and is important not to be influenced in your decision. That's my opinion, sorry if I've disturbed. Reasons for postponing treatment could be various, your situation could be different. This is a very important decision in your life. Think about giving the virus to your newborn child.

[ringading]

i think we have discussed this before in depth, the chances of passing this virus to an unborn...new born child is ALMOST ZERO...i even had an emergency c-section after 44 hours in 'natural' childbirth...(WHAT WAS I THINKING?),and my daughter, now 19 yrs old is fine and does NOT have the virus. and i DEFINATELY had it before i became pregnant. i am not sure of the percentage, someone will be though....but it is HIGHLY HIGHLY unlikely to give this to your child.
kimmy

[dee40]

TO TALLBLONDE, I my self am not on treatment at the moment, but iam type 1 cyrossis and have an app. feb. 6 for counciltation. i find myself coming here everyday. and sometimes i wish i never knew i had hepc. i hope that the doctor doesnt tell me that i only have little time to live. cause i wont be able to handle that. im wondering if i have time to wait till another treatment  comes along. or to treat. im not ready to stop working right now i have a daughter that is 9years old and i want to be able  to go for a bike ride or walking or swimming or anything. i feel great now.  i dont have any symptoms. so im not sure what to do any input from anyone would be appreciated. dee40

[dheana]

good news.my doctor has a different opinion.he sent us to test the kids and really didn't want to do it.

[Tallblonde]

Thanks for clarifying what you meant.  Although I mentioned my pregnancy plans when I started this thread, it's not the primary issue I had in mind.  I was just curious about the decision-making process that other people engage in for choosing to postpone treatment.  I'm wondering what the compelling reasons are for that choice (besides pregnancy).  Thanks for writing.  I hope you're feeling better soon.  Take care.

Susan

[ringading]

i know..i know...i was scared to DEATH at the thought that i would have given this to my child and more than anything was terrified about that..and had to for my peace of mind have her tested....i could handle anything, that was thrown at me, as long as my child WAS OKAY....so i understand that fear...but i have since learned that it is ALMOST...ALMOST impossible to pass this to our kids..so stay strong and get them tested for your peace of mind at least and please come back and share the good news, that they are 'virus' free..here okay....hang in kiddo!

[Tallblonde]

Welcome to the board.  When did you learn that you have Hep C?  It sounds like you're still in that "shocked" stage.  Understandably so. I don't have much wisdom to offer regarding your diagnosis (this is new territory for me, too), but I do want you to know that you'll find plenty of support and friendship here.  You're not alone.

Take care,
Susan

[honey1616]

are you presently working outside the home?  If you have a pretty easy schedule then there is no reason you couldn't still enjoy activities with your daughter and all of those would be great for you to do.  There might be a couple days out of the week that you may not feel great but you will plan around that schedule and still enjoy your family.  Hope this helps and best of luck!

[GwithHepC]

Ringading

While it is highly unlikely to pass the virus to your child (almost everything I have read says the likelyhood is 5%), I think "ALMOST...ALMOST impossible" might be a bit on the optimistic side.  Some things that increase the risk of transmission is HIV + status, high viral load in mother, and forceps delivery.  My daughter is infected; I had no idea I had hep c when I was pregnant, but almost certainly had it when I was.  I am HIV -, have no idea what my viral load was when pregnant(it is around 400,000 now).  However, she was 2-weeks post term and delivered by forceps after a very long (48 hours)delivery, so at least one of the factors that increase risk does apply in our case.  I am not saying anyone should worry about it since 5% is pretty low, but I'd definately wouldn't say 5% is almost impossible.

G

[Revenire]

There was a time when I said TREAT to anyone and everyone that came here asking but after reading GI.PA's reasoning, among others, I've changed my mind. I think given your biopsy score you have plenty of time. If mine was what yours was I might just wait myself. I'm jealous ... not really :)

Scott

[willing]

Hi Susan, from what I've read and experienced my recommended algorithm would be : if geno is not 1 goto consider_tx, else if bx stage >=2 or (bx stage = 1 and age >=50)  goto consider_tx else monitor (wait sounds too much like procrastinate: the need to tx may never arise).

Consider_tx means if you have no  significant contraindication (eg mental, cardio, autoimmune, etc.) treat else sweat the details. I think of tx for 1s as a risky gamble one should avoid when they reasonably can.

[jonihs]

understand the reason you don't want to get pregnant afterward. I know the way I feel now,I wouldn't feel up to pregnancy, labor , or taking care of a new born. I also know of your past problem, but please tell me why you can't tx. now, wait your 6 mo., then try again. Then there wouldn't be any pressure(you know what i mean) And if it' supposed to happen, it will. God Bless and Good luck.                Joni

[Tallblonde]

You wrote: "I think of tx for 1s as a risky gamble one should avoid when they reasonably can."

I agree with that statement totally.  I respect your opinion and I'm glad that it corresponds with my own instincts.

Thanks much.

Susan

[Sujo]

I found out I had Hep c around 1992?? during blood donation...anyway at that time my test always came back as "indeterminate" so nothing was done.  Finally in 2000 my regular doc referred me to a Hep Doctor as he was not up on any of the Newer Hep treatments. The Hep doc wanted me to participate in a study that was going on at that time. Due to my childrens young age I decided to wait and be a parent for a while.  At that time my LFT were normal (always have been) biopsy 0-1 and vl was 39.  BTW, I've had this for over 20 years and both children delivered via c-section test NEGATIVE!  It is a great relief!
Now, my kids are 14 and 9 and I have decided to start treatment. Reasons being that I still feel ok, I'm 44 and not getting any younger.....and who knows when this virus will decide to kick up speed....so I start Monday....
There's not a right or wrong time to do treatment.  It's a very personal decision, and has to be YOURS.
Sue

[Tallblonde]

At my "advanced maternal age" of 44, it's just not reasonable to wait 18 months (one year of treatment and six months of "de-tox") to attempt a pregnancy.  Both my GI's strongly advised against that and encouraged me to "go for it" now.

Susan

[Tallblonde]

You're about the only one who's jealous of me these days.  Nobody I know personally is eager to be in my shoes, that's for sure!  Hey, thanks for the perspective on waiting.  I appreciate it.

Susan

[honey1616]

Just wondering why you think tx is risky gamble or 1's?

[jonihs]

I didn't realize your age or stage or who woud not have given the advice I gave. You go ahead and keep trying as long as it doesn't risk your health,you. Whatever God's Will, It's HIs will.  You are in my prayer  Love,    Joni

[DonL]

I got my diagnosis in 1989, but a biopsy showed little damage so I decided to wait. The interferon at the time placed my chances of cure at 20%. A second biopsy in 2002 showed slow progression, no cirrosis (cirrhosis) (sp?). My vl was 141,000, genotype 1b. I decided to treat now because there is some progression and because I am still healthy and can handle the tx. In addition, the tx has improved so my chances of a cure are better (almost 50% at start). I am in week 15 and undetectable, so my chances are up to 60%.

I would ask yourself, where am you likely to be, physically, in 3 years and what do you think the chances of an improved cure are likely to be. That may help your decision. Good luck whichever way you go.

[GreatBird]

Hi Susan. I'm doing the watchful waiting. This is because right now my body is doing fine. I am not symptomatic. My biopsy a year ago was stage 1 grade 2. My LFTs have always been normal until the last year-and-a-half and now they are only very slightly elevated. My VL is low (319K). My genotype is 1b. If it were one of the 2's or 3's then I might reconsider.

If I were to treat the statistics are 50% for clearance. I just don't think that's a high enough number for me to jeopardize my tx naive state and my health to possible long term affects from the tx (thyroid etc.). I want that number to get up to at least 70% before I treat. I also hope the time will come when doctors are more able to customize treatment because even within genotypes, we are not all the same.

Things that could change my mind: if I become symptomatic, if I stand to lose my heatlh insurance, if several years go by and there is no change in the odds or the tx, I might give in since I'm not overjoyed at hosting this virus. BTW, I'm 49, I'm eating a very liver friendly diet and staying away from toxins in all forms as best I can. I have two children (14 and 21). Neither have the virus although I had HCV when I was pregnant and delivered.

[jg2001]

Your reasons and feelings are yours regarding your treatment.  I went to mey orientation class last night.  One of the big HUGE questions from one of the gals that was there was that she and her husband wanted to get pregnant.  The Dr. said that the Riba causes birth defects.  So, you figure,6-12 months of treatment and then the Dr. recommended 6 months AFTER the end of the riba treatment.  She stressed this point.  She said that it was standard the duel treatment, so interferon alone, is not an option at the hospital where I am being seen.  It may be different where you are.  I know that I have ONE son and will never be able to have another child.  And like Ringading said, "as long as my child is ok". That is a natural way for a mother to feel. From what the Dr. told our class last night, the Riba may cause birth defects up to 6 months AFTER the stoppage of treatment.  So, if your decision is to have a child and then  commit to 12-18 months of treatment and post treatment, go for it.  

Jamie

[totemman]

I have decided not to treat at this time because of family difficulties.
I have a 2 1/2 year old baby and she is wonderful, my wife had her thyroid removed when 5 months pregnant.  This has caused more stress than I have ever imagined then 2 months after the baby was born I found out of my Hep-C.  I have type 1b and 2 years ago the % of cure was to low, my ALT 150-180 AST 65-85 with minimal fibrosis stage 1. I have had many symptoms including liver pain, no energy, short temper, depression, back pain, and so on. I decided to use acupuncture and have regained most of my composure.  Except for a few months age I got the flu and started feeling ill again.  I am starting to feel alright again but wonder when or if I should try the tx.  For now I don

[dee40]

to honey thanks for your reply. my work schedule changes from week to week, although my manager knows and she seems pretty support of, her aunt is going through treatment, so she kinda knows a little. Im a waitress and i love my job and make great money so im hoping i can still work, idont think that i can get fired because of discrimination. so i hope everything will work out.dee.

[britgirl]

I waited for about eighteen months after the biopsy results before I told the hospital I wanted to do the treatment. I felt everyone was pressurising me to do it and I didn't feel in the right state of mind. What really convinced me was finding out my genotype (hospital policy was not to test for genotype UNLESS the patient wanted tx - Crazy, huh?). I was 3a. I f I had been genotype 1 I don't know what I would have done. I think it is good to have a period of reflection rather than get bounced into tx by the medical profession. That way, when you CHOOSE to do it you will be mentally stronger.

[Tallblonde]

I wish I had time this morning to comment on each of the posts I just read.  My thanks to ALL of you for sharing your thoughts, perspectives, and personal experiences with me.  By the way, I'm definitely going through with the embryo transfer on Feb. 2. I'll know by Valentine's Day if it "worked."  I'll certainly keep you all posted.

Thanks again,
Susan

[simpleman]

I agree completely with your decision, and Scott's opinion, to wait. Also even if you had the time to do tx then wait to get pregnant, I don't think I would completely accept that the baby wouldn't be harmed by the meds even after waiting. This from a guy who completed 48 weeks of tx. If I had your numbers I would wait even without the pregnancy issue. I think you have made up your mind so don't second guess yourself. You're doing what YOU think is right for the RIGHT reasons. Good luck.

[jg2001]

After your passed experiences, I'm keeping my fingers, toes and eyes crossed that it works and is successful!  All my hopes and prayers,

Jamie

[ringading]

yes, i was sure i remembered you posting this to me before, i am sorry....it really is quite rare for this to happen, but in no way did i mean to minimise the pain you and your family must experience.
kimmy

[cindyazure]

When I found out I had hep c, the first thing I did was to get the kids tested.  They were ok  whew!  After the bx I put some time aside to get my life prepared for whatever might come down the pike with tx & sx.  Finances, support also my son had his permit & I figured I might not be able to teach a teenager to drive while going thru this.  Once things were settled (& my son got his license) I started tx.  Do it when it's right for you and the best of luck to u.

[jonihs]

Hopefully we'll all have an extra reason to rejoice this Valentine. My prayers and positive thinking are w/ you daily!     Joni

[Tallblonde]

Sounds like you took a very sensible approach.  Thanks for writing...best wishes for a successful treatment outcome.

Susan

[HepperLepper]

I was diagnosed 8 yrs ago with Hep-c. I am 47 years old. I found it because of a real sharp doctor. I was being treated for PCT (Porphyria Cutanea Tarda) at the time and he heard that 85% of the folks with PCT get Hep-c. PCT causes iron in your blood to build up. I had to take phlebotomies to reduce those levels. My liver apparently was holding up well after the many years of abuse I have given it and my biopsy showed only slight damage and no cirrosis (cirrhosis). It was good to know my conditions before they were problematic. I heard the "horror stories" of the treatment and said, "I can wait till they get this thing figured out better". I didn't like messing with my immune system since it seemed to be working fine...no colds or sickness in years! Besides, "if 85% of people with PCT get it...I would no doubt get it again". That was my logic.
Well, due to pressure from family and friends, I opted to take Peg-intron and Riba tx last june. One of the first tests I asked for was geno-type. Of course, I was group 1. I started to clear but not to undetectable, then after 6 months, the numbers started going the wrong way. Sx was tolerable because I was able to mark it on a calendar and I knew it had an end, one way or the other. Currently, my vl is 250,000 and alt and asp are in high end of normal ranges. My current doctor (a Hematologist) ordered the wrong test for baseline data so I don't really know where I started. I only know where I am and how I feel. I stopped tx on Xmas eve (hohoho) and I am now feeling much better.
I am optimistic that tx will be better in the near future. I do not regret taking the tx at all. I learned a lot about the disease and about myself. It wasn't so terrible to do. You just have to treat it like a short term thing. I did take Paxil to try to keep my mood right since I have been a volitile guy forever but I don't think it helped much. Once again, it's attitude that gets you through it. If you aren't ready to kick ass, then you will be miserable during tx. I hope you can muster the courage to give it a shot. Get a specialist though who really can monitor this thing. I think my guy screwed up a few times just cause he doesn't see this much and probably just "cookbooked" it. I am going to get a specialist next to monitor and let me know when I have a better chance at clearing it.
Tom

[audreywald]

I waited for about 7 years, I was really afraid of the sides. I could not see past the tx; I could not envision getting well.
But the last few years I have become very symptomatic; fatigue, joint pain, lots of stomach pain - I got sick of being sick. So tomorrow I do shot #4.

It is been a minimal sides week for me, I even had moments of feeling just fine, and I am starting to appreciate those moments. If I can buy myself some years of health, energy, stamina ... this will be worth it.

[DonL]

I wish you the best of luck on February 2nd. You have the luxury of being able to wait and something important you want to do first. In your shoes I would make the same choice. I'll keep my fingers crossed for you.

[Tallblonde]

Thanks to each of you for writing.  

Oonihs:  That's very sweet...thank you.

Tom:  I think you're right about having to be "ready to kick its ass."  I'm not there yet because it hasn't caused me too much trouble or inconvenience (unless, of course, my five miscarriages are due to HCV).  But when (or if) it starts really messing with me in terms of fatigue and other symptoms, I'll be ready for a fight, that's for sure!

Audrey:  Good luck to you.  I hope you're able to sail through the treatment as smoothly as possible.  You're doing the right thing.

Susan

[Tallblonde]

Thank you so much, Don.  I really appreciate it!

Susan