To Re-Treat or Not Re-Treat?

[Merlin51]

I need some advice- See my Dr. on Monday and need to make sure I get all the options on the table....

I finished 48 week PEGintron/Rebetrol tx -showed cleared after 6 weeks of tx. last shot 6/20  NOw the Viral load is back and is at 943,000- ALT 142  AST 72 -  genome type 1b, stage 3-4 (showed slight cirrhosis) at biopsy prior to tx.
My biopsy report aslo says: -lobular grade 1  portal
grade 3.  Not sure what that means but would love to get your input.

Also, any ideas on altenative med therapy? Does it work?   The tx messed me up pretty good and am concerned that I will lose or significantly lower my income (am in sales)if I re-treat! Obviously, health is better than wealth....but would love to have food and health!
Any ideas???

[flyinlynn]

Finished 12 weeks no sides

Good luck

[Merlin51]

Back now starting O&S TX  
12 weeks.any feedback here on those sides.
Wish me luck

[Merlin51]

Thank you so much!  I have looked it up and saw that they are doing (or did )a study at sloan kettering......with this stuff !
I wish I knew how to post a link.... I will try to figure out and post it....

[willing]

Hi Merlin, here's some information about <a href="http://www2.us.elsevierhealth.com/scripts/om.dll/serve?retrieve=/pii/S0270913999000397&nav=full">sho-saiko-to</a>, a traditional oriental medicine with recognized anti-fibrotic properties. Out-of-range AST/ALT are more common than normal levels with chronic HCV. Neither high LF tests nor high VL indicate progression of fibrosis - serial biopsies are currently the only reliable way of assessing changes in fibrosis. If it's been about 3 years since the last one, you should talk to your Dr. about getting an update. The outcome will play a big part in deciding what to do nxet. Best wishes to you.

[Merlin51]

Thanks very much for you point of view.  That has been my suspicion/fear all along.  I am concerned about containg fibrosis more than anything.  I was told that 40+ weeks of nonedectable that I had was good for my liver but now that tx is over my LFT's are highest in my life and jumped 20% in one week!!!   I hope I can learn of something to use until better efficacy of tx is achievable.   I am not thrilled about increased dosage/lenghth of tx unless I can believe it will be worth it somehow.
Please send link if you find it.....

[mofo]

When you say "really messed-up", how so? I ask only because I also got really messed-up, psychologically, and as a result have been told that the consequences of treating again, far out-weigh the benefit of clearing hcv. Otherwise, I would tend to agree with previous posts.  You responded early, and well. If I didn't carry the baggage I now have, I would be aggresive in treating again. Just another 2 cents! Wish you the best!

[Merlin51]

Thanks for all your help and good wishes.  It helps a lot to know others have been here before-and are here to help.  
One scary thing is that my LFT's are way up(about 20%) in one week (now 101-ALT and 88-AST.  Jeez they were never this high even right b4 tx with a viral load of 3,000,000!  Has anyone seen that happen b4? leans me towards some tx sure.  

I am researching alternative meds too  - has anyone heard of results on that end with type 1b?

[willing]

it sure is  a hard decision.. and to the best of my knowledge there is no prepared "standard" answer for relapsers - you pretty much have to guess. I won't know 'till next year whether I have to make this choice but  from what I've read and heard so far I can already tell  you I would opt to contain fibrosis rather than restart tx. Retreatment of relapsed 1s seem to offer promise only when you can significantly up the ante (mono->combo, increased dosage, longer tx). Retreatment of relapsed 2-3s offers much better prospects as evidenced by several people on this board - but to the best of my knowledge (I'd love to be wrong about this..) we haven't heard from any 1 that successfully completed a full 48-week tx, relapsed, then SVR'd on retreatment with a standard tx. By no means does this mean it can't happen - it just doesn't seem common.

I hope BobK has a chance to see your post. In a thread which unfortunately has now scrolled away, he recounted his heroic 100-week tx and described what he's now doing to contain fibrosis. (I'll post the name of a hepatologist-sanctioned herb he's using if I can find it). The outcome of the HALT-C and REPEAT clinical trials will be  directly relevant to you - you should keep an eye on them. A big part of my spin on this is the hunch  that though we may still be 4-5 years out in terms of new drugs we should start to get better answers about why combo tx works/fails in different people within a couple of years (the damm thing only has a couple of proteins for disabling the immune police..). Best wishes in your decision.

[nurse12hr]

My husband was clear 3 months after ending his first year long treatment; by 6 months the virus was back.

Then did a year of PegIntron, and despite high LFT's (they started rising midway thru the year to a max ALT of 300 or so) he is still clear one year post treatment!  His docs feel the high LFT's are from his fatty liver disease, and consider the hepC a dead issue.  His enzymes are still high, but are VERY slowly falling now.

So retreatment was worth it in our case.

[susan400]

I've retreated several times.  I know a lot of people probably don't agree with my choices, that's okay. But, since I've never been a responder, I don't want to just give up.  Currently, I'm on treatment with higher doses using Peg-Intron and regular Intron.  The reg. is daily doses, the Peg is once a week(was at twice a week at one point).  I did not respond to Pegasys.

Susan400

[TravisB]

I also relapsed after testing clear at the end of TX.  I spoke to several researchers and doctors and what they said was that the good news is that I initially cleared which means I'm a responder.  (In your case the even better news is that you cleared at 6 weeks which is very early and usually a good indicator of ultimate success.)

The not so good news is that they said that if I was to go on TX again I would have to do double the time as my initial TX which was 24 weeks and that my chances of success were about one in three. I chose not do it because my biopsy showed only moderate damage.  I suspect that with your fibrosis being at 3-4 your doctor will be fairly agressive in encouraging you to try again and that's probably what you should do.

I can't imagine that pegysus is that much different from pegylated because they are both time released interferons. So, if you're going to do TX again I'd ask the doctor about a longer TX the second time around

[Helyn]

I am very sad to hear you are in this situation and I know at least some of what you may be going through.  Tomorrow I shoot #3 of Pegasys, my second round of tx after not responding to 38 weeks of Peg Intron.  I was pissed and very sad.  The bottom line for my decision to start Pegasys was that as much as I hate treatment, the chemical makeup (size of molecules) of Pegasus gives it a more long lasting effect than Peg Intron, regardless of the fact that they are both pegylated.  That does a better job, theoretically, of providing more consistent coverage than the Peg Intron formulaton.  I figured that I was still in the treatment yuck mode, it was definitely worth my while (I hope) to try 12 weeks of the Pegasus/Copegus treatment, have my Heptimax and see if I responded.  I personally didn't want to make the jump to multi or mega doses of interferon.  I just don't think they know enough about that yet and the nurse practitioner in the hep office I go to confirmed that.  Lots of things are in the pipeline and if, God forbid, this treatment doesn't work for me, I'll continue to inform myself and see my hep doc and get in on it.  That's just my take on things, at the moment.  Yours is entirely individual - I just thought I'd give you my rationale.  I searched for one when I was trying to decide and basically did lots of research, talked to people and then made what I thought was my best choice.  What a choice, huh?  I wish you all the best and will look for your posts.

[whybabe]

Tough BREAK!  I feel terrible for those of you that do a full of HELL (TX)and still not cleared.  Thank God the meds are still getting better.  God luck and God Bless!
Deb

[doll face]

That is a call for you to make. There are a few of us here that ARE on our second round. I for one was on pegintron too and showed cleared. 6 weeks after tx was done (48 weeks)my viral load was back up too 1,890,000 I am on my 13th week of Pegasys this Sunday. Tomorrow I will be able to get my 12 week viral count. The sides for most of us are easier on the pegasys but there ARE sides. Good Luck I hope that you chose to fight the dragon but support you either way.

[raheem]

I feel for you.  I'm a 1b guy 16 weeks into tx, clear at 12 weeks and it is on my mind already.  What if....Anyway, it seems several folks here have failed with pegintron or relapsed after using it for tx and they are giving pegasys/copegus a try with less side effects and statistically better chances of clearing.  I don't have to tell you, it's a tough call-but what the heck, try it and see if it's more tolerable and perhaps you'll get better results. I think mike simon has been in your shoes.