I'm clear but is it worth continuing on this long road?

[St. George]

I would like some thoughts on my situation.  I found out yesterday I'm finally clear (1A) at 24 weeks.  My problem is I don't know if I can hang in this awful game for another 48 weeks to make a total of about 72 weeks.  What are my chances of SVR if I only went about another 7-9 months instead of the full year? Also, when should I have my next heptimax pcr to determine if there is any viral breakthrough or not?

[illo]

If your sides aren't horrible, like loosing eyesight, stability, I'd try to hang in there.  The thought of a relapse and having to do it again is horrid.  Good Luck with your decision!

[suzieq2]

as a nonresponder, keep going. You don't have to accept your insurance companies decision. FIGHT THAT. there is so much literature out there to prove to them that you should recieve the extendended meds. My ins. co. denied me a referral to an out of network Dr, for a consult for vx-950. They told me I had to bring a specialist before their medical board. yey right. My husband explained that it would be an attorney showing up at this meeting. low and behold I recieved the approval in the mail the following week.The standard protocal is 72 weeks and they will pay for it, if you don't take no for an answer.Go for it.

[DoubleDose]

Take it from one who relapsed on the first round, and had to do high dose Peg-Intron for 72 weeks on the second round....and got the SVR......Do the 72 weeks!  Do not take a chance on relapse, and if you did not clear until close to week 24, you will need every bit of 72 weeks to give you decent odds of SVR!  The extended dosing model is 72 weeks for those who clear after 12 weeks but before 24 weeks, and it seems to be producing a much higher SVR rate for this group.  The rule of 36 weeks after clearing DOES NOT APPLY unfortunately, for this group.  Do NOT use it, since it was not intended for late clearers!!!!!!

Take it one week at a time, and you WILL get through it.  It really is very doable, and thousands have made it through this extended tx.

Good Luck, and count your blessings that you are clear!!!!!  Get the SVR!

DoubleDose

[sfbaygirl]

Hey you guys speak for yourselves! I don't look so good! My hair is like straw and sticks out all over. I am getting wrinkles and circles under my eyes. My eyebrows are gray. I am all washed out and am gaining weight. My designer clothes don't fit anymore...not that I would wear them. All I wear is what I find on the top of the drawer and it is usually the same ol' thing I wear day after day. I usually don't care if anything matches. My liver may be looking better, but I sure am not! LOL

[Ambush]

My advice ~ Go for the long haul.  I didn't show up clear until 24 wks and had to fight with the doc to keep me on until 60 weeks.  I'm 2 years clear now (1A) and though it's horrible to look at that many more weeks ahead.......it's heaven to look back at 2 years clear!  It's worth it. Hang in there, and good luck to you.
ambush

[beamishboy]

may well be the fact that we don't look as bad as we feel!...thank god  for that...
friole-i was in a 'special mood' and thinkin i could handle a little more trx-hah..today,after my fri. shot,i want to finish !!!!!!!!!!!!!!!

[GrandOak]

Another perspective is that at least while on tx, your liver is getting a vaction from battling the dragon and able to focus upon it's primary function of clearing toxins from your system.  This is probably more true for folks that are able to achieve UND.

I also think that this is what makes it hard for people to understand what those of us in tx are going through.  Despite all we are going through, others seem that we are looking better, which I believe is because our liver is getting a break.

[GrandmaA]

If I don't clear my liver will heal so much that I can wait for the new meds (3 years away now). I need to go see my new grandbaby. She will be a month old tomorrow.

[friole]

St George -- What was your VL at 12 weeks?  If it was under 6000 and then you were clear at 24 weeks, you have an increased chance of attaining SVR after 72 weeks.  Don't you think it is worth it to do 72 weeks once rather than 48 and maybe have to do it again?

I did 56 weeks to get my 36 weeks clear.  Didn't like the overtime, but it sure beats a second time. I will have my 3 mo PCR first week of November.  Guess I will know then...

beamer - ha ha -- all your P&S (pain and suffering) and you are opting for more. Must be a glutton for pain.   Kalio is right -- if you have the script the pharmacy will fill it.

avid - still can't believe they wouldn't let you do the extra time.  I think the 72 weeks is the standard for extending.  I think there was one study (maybe Drusano) where it was evidenced that the longer you are clear the better your chances, and they used 30 and 36 weeks post clear as the markers. It was a small study, but that was my reasoning in going 36 weeks clear. I with they would do more studies on this.

[sfbaygirl]

Why are you wanting to extend, if you cleared at week 12? The pharm may refill it, but the ins. may not pay for it, this is the problem.

[Kalio1]

If your doc will write the scrip they will fill it!

[beamishboy]

long road-longer life!! i have 3 weeks left..1b cleared @ wk 12..i am trying to convince docs to extend anothr month for grand total of 52......trx sucs BIGTIME ! but at this point doesn't it make sense to keep on fighting this stinking virus??.. i'm gonna try and get another months supply from commitmnt (my meds say 1 refill left,,,soo maybe? )

[DougV]

I second mycoldfeet.  I did not show undetectable until week 24, but had four log drop at week 12.  Only did 48 weeks and relapsed 12 weeks after completion.

Sure wish, hindsight being 20/20, that I would have done 72 weeks.  Now I get the joy of doing it again.

Doug

[avidreader]

I think the recommendation most enlightened/up to date Hep docs make is to treat 36 weeks past the date you cleared the virus which would mean a total of 60 weeks treatment for you. I cleared at 26 weeks and my doc wanted me to treat for 62 weeks but my insurance company would only go for 52. It wasn't awful and I would have welcomed the chance to continue for another 10 weeks. I think it would be tough to stop early and then in the event of relapse wonder if the extra weeks of treatment would have made the difference. I got for my 3 month PCR in 5 weeks, and I know I'm going to be very pissed at my insurance company if I relapse! Love your screen name--I may be headed to your island in a few months ;-)

[mycoldfeet]

I'm 1a and did the 48 wks and cleared, a few months later relapsed, I'm on shot 6 of 72, yeah it sux, but cowboy up, and know there are people that want you well, doing it again is a bummer but If your chances of SVR is better at 48 or 72 do what is needed and 48wks is the minimum if you clear at 4 wks for 1a longer if clear later. If you can do it the first time, don't take chances,you don't want to do it again.

[way]

Don't quit!

[PasoPerson]

As a fellow 1a who didn't clear ... I would say to you YES YES YES, it is worth the "troubles" that come with treatment. A thousand times YES.

All I've done for the past six months post-tx is feel like I'm just allowing The Dragon to kill me a little more each day; and without me doing a thing about it.  

Next week I go back for my 6-month post-tx visit.  I'm so anxious it isn't funny.  Within just 4 weeks of tx and not clearing, my 2400 VL went skyrocketing to 450,000.  I'm going to ask for another biopsy to see how far it's progressed the past 6 months.  Then I'm going to ask to be put back on treatment.  The only thing sadder than suffering for 24 weeks and clearing, looking then at 36 more weeks, is suffering for 24 weeks and NOT clearing.

Look not at next week or thereafter, look into your future down the road.  Clearing, whatever that takes, is so worth it.  Please don't quit now.  WE ARE THE DRAGON SLAYERS, and being St. George, you know well of what I speak!  

I'll be praying for you.
- Carolyn

[GrandOak]

If it were me, I'd want another VL done at 48 weeks of tx.  I'd also want them to run the most sensitive test possible (i.e. < 5).

As for being worth it.  Well, I had a viral breakthrough of 1.1 million at wk 24 and was asking the same question.  I felt so much better than I had for years just prior to my diagnosis nearly a year ago, and have felt like a steaming pile of dog cr-p every since I began tx.  When VB happened I began asking if it was better to quit tx and hope I get good pain killers to help latter when liver shot and ready to give up the ghost.  At least then perhaps I could feel like a human being again for a time and be able to do things instead of being a JAFO because I don't have the energy.

Bottomline is that I resolved that I would go the haul no matter the length or the number of times I need to, not necessarily for myself mind you but more so for my family.