question

[charlotte]

i have finished my treatment now and have been negative every month during the treatment, also was negative 1 month after treatment was completed.  doctor will retest 6 months post treatment, has anyone tested posted at the 6 month recheck,

[Ann]

Hi Charlotte, welcome to the forums.

My ex-husband had a detectable viral load again after treatment - and if I remember correctly, it was about six weeks after he stopped treatment.

They'll usually check you every couple months for at least the first year and if you still have an undetectable viral load at the end of a year post-treatment, you're pretty much considered out of the woods.

I'm a bit surprised your doctor isn't going to test you again until six more months have passed. It may be an insurance thing not allowing more frequent testing - damn insurance companies! (but that's rant for another day)

You should continue to be checked yearly after that. I did the treatment in 2002/03 and my yearly VL checks have continued to be undetectable.

I've got my fingers crossed for you that you will also achieve a sustained response (in other words, cured!). I will say that still being undetectable at one month post treatment bodes very well for you.

Good luck and please do keep us posted.

Ann

[charlotte]

Thanks Ann, i was thinking to go in to see my primary doctor, i can ask her to order labs to check, i really want to check my cbc too, cause i still fell tired at times, although i feel much better, im still not at 100%.  the incivek drug is a really tough drug...i have also gained a few pounds back, and I'm looking much better, not as sickly.

[Ann]

You're welcome, Charlotte.

Honey, all the drugs used to treat hcv are - well, a bitch, to be blunt. But they can and do save our lives, so hey, why not?

Ten years ago when I did the treatment, pegylated interferon was the new kid on the block and it meant instead of people having to have three shots a week (~shudder~), we only had to have one.

The triple-therapy (adding incivek) is new and while it may add to your side-effects, the good, no, the great news is that far more people are having a sustained response on triple therapy. So try to not worry too much; with a still-undetectable viral load at four weeks, chances are excellent you're one of the lucky ones.

Hang in there, ok? I understand how nerve-wracking the first year post-treatment can be with all the worry that your VL is growing again. Do your best to not think about it too much or if you do, think good thoughts. Don't let worry get you down.

That's a great idea to go to your primary. While she may not be able to order hcv VL tests (although she might), she definitely can order a CBC and chem screen to see how your general counts are rebounding. And they will be rebounding, but I'm sure you'd like to know where you're at so far.

It can take a while for you to feel more yourself. In my case, I felt a great improvement in the first few weeks, then it tapered off and yes, it was quite some time before I didn't tire so easily. Take it easy on yourself - you've been through a tough treatment and you deserve to pamper yourself for a while.

I can't stress this enough - just like getting through treatment is a "one day at a time" type thing, so are the early days of recovery from treatment. And you are still in the early days.

Keep eating a healthy diet, drink plenty of water (great for the liver), get plenty of rest and make sure you're getting some exercise each day too.

Gentle exercise (walking and/or swimming for example) will help you regain some of the muscle loss you've probably experienced and it will also do wonders for your fatigue. I know it sounds counter-intuitive, but exercise really can help improve your energy levels and make you feel a lot better.

Don't push yourself at first - see if you can manage a short walk. Increase it as much as you feel comfortable with and if you're tired when you get back home, take a nap. Remember when I said "pamper yourself"? Well, pampering yourself doesn't mean becoming a couch potato. Get out there and get active again.

Hope this helps. Again, good luck and please do keep us posted as to how you get on.

Ann

[Ann]

i have finished my treatment now and have been negative every month during the treatment, also was negative 1 month after treatment was completed.

Something about this thread has been nagging away at the back of my mind and I just realised what that's all about.

You're talking about testing negative, and I'm talking about having an undetectable viral load test.

One thing you might already know, but I want to make sure of, is that you know you will always test hcv ANTIBODY positive.

So when you ask your primary doctor about testing for hcv, make sure she understands that she will need to run an hcv VIRAL LOAD test, not an antibody test.

The test that decides whether or not you've had a sustained response is the viral load (VL) test. Not the antibody test. I just wanted to make that perfectly clear for you, just on the off chance that you weren't sure about it.

Keep us posted! I'd also like to suggest that you check in here regularly to see if you can give others moral support, advice and tips on surviving treatment. It's a tough row to hoe, and letting people know that you can and will come out the other side may help someone more than you may realise.

I've got my fingers crossed for you that you achieve a sustained response. I know how difficult all this is, but you can and will get through this. Hang in there!

Ann

[jberlin]

Hi Charlotte,

What treatment, how long & what genotype?  You said you were UD every month, so you had to be on one of the triple therapies I assume?  Under the dual therapy relapsing post treatment was very common, and with geno 1 more common than achieving SVR.  A relapser was someone that went UD during treatment, then has a viral load in a blood test some months post treatment.  I did 48 weeks of dual therapy in 2004, relapsed at the six month test in 2005.  Remember, no blood test currently can detect less than 7 viruses per sample, which is why we use UD as opposed to negative.  And, yes you will always test positive for Hep C antibodies.

I just completed the 24 weeks of the Incivek triple therapy this past November, and was UD after 4 weeks with that treatment versus 24 weeks with dual therapy, and still UD at the 3 month post treatment mark.  Current thinking is that UD at 3 months indicates cure, but the official CDC position is six months post treatment UD indicates cure.  Debate about incubation time I guess.  So, I cross my fingers for May for me and July for you!

The treatment is not for wimps!  I lost nearly 40 pounds in 2004, about 15 this go round, and it is hard to have no red blood cells and the flu all those weeks!  And the awful taste in your mouth, yuck!  Congrats - you will feel better every day now.   -jack