EOT appt. Relief and worry at same time

[annieCinMD]

I just got back from my EOT appt. Happy that relief is in sight, but my last bloodwork, drawn 2 weeks ago at week 26 came back <25 but detectable. Honestly, that just confirmed my already solid decision to end treatment. Of course they drew more blood today and we'll wait and see what the next result brings. I spoke with my doctor again, about options, my decision to stop, etc. Should I end up relapsing, and I am already accepting this as being a very high probability (I'm a geno 1 and geno 1s due relapse even on PIs), I will continue to track my progress with the doctor. New biopsy, whatever. We discussed some of the newer treatments that are on the horizon. He told me there is an interferon that works directly on the liver, so there is no brain fog, etc. Not sure of the details of how it works but I had such a bad time with interferon I would be very hesitant to do this again anytime in the near future with that nasty stuff they are using now. His words to me were something along the lines of finding a better time for me to re treat, as in now is really a bad time with jobs, kids, school, etc. all getting in the way. My doctor is a GI, but I get the feeling his work is almost exclusively with Hep C patients, so I have no problems with continuing to work with him. Hoping for a false positive, but accepting the other option as well. Just looking forward to feeling good again, and getting on with life.

[Kathy73]

I'll be thinking and praying for that false positive!

[Marc1955]

Your state of mind so reminds me of how I felt toward the end of treatment (now almost three months ago). The psychological effects of the interferon can so profound – they cloud everything and make us blue. I also remember when you started treatment full of enthusiasm and energy.

Either way, retreat or no need, I wanted to reassure you that you will get your life back. Not totally right away. It takes some time to get back to baseline. But it does come back. Then you'll be in a much better position to consider next steps.  Good luck!

[annieCinMD]

I remember responding to your post a few days prior. When they told me about test result, I actually looked up the thread. Sorry you have to wait for the 21st to retest. I'll probably have to wait about 2 weeks to get yesterday's result back, so waiting it out with ya!

[Rockerforlife]

Ive read that in the former  Boceprevir trials, that it was the relapers and slow-responders who didnt do so well,im not sure if this is including the slow responders who had a RVR,but all was in favour of the naive patients I have concerns myself if im gonna SVR,even tho i had a RVR.

[mnl1]

Hoping for a false positive, but accepting the other option as well. Just looking forward to feeling good again, and getting on with life.

-----------------------

We are in the same place as I am waiting on the 21st to retest... hoping for the best but preparing for what might be next.

Hang in there annie.

[nygirl7]

I had a false positive at the end of treatment myself.  Read 60.  The doctor insisted that it wasn't true that a month after treatment it would have been at least in the 100s of thousands because it'sa  virus it wouldn't be such a miniscule number.

I didn't believe him of course but I did go back a month later and get the new PCR done.

Of course it was negative.

Yours could be too.  It happens more often than you think it does around here. Take the next test and don't worry about it  until then.

[Marcia2202]

Annie, I really hope you didn't have a breakthrough. I wouldn't be surprised either, if it was a false positive. Especially since 518 is supposed to be a superdrug, from what I've heard so far.

Keeping you in my thoughts.

Marcia

[annieCinMD]

SCH900518 (Schering Plough)

[banarep]

just curious, but what PI are you on?

[annieCinMD]

My study coordinator told me she's had people relapse while on the PI, and I mean actually still taking it, as I was. My study is not blinded, so they know that the person is getting the drug. The PIs greatly increase the chance of a geno 1 clearing but it's still nowhere near 100%. I read those Clinical Care Reports and also the initial findings of Phase 1 of the trial I was on. The SVR rate for 1s is in the 60s but you got that other 30%.  The PIs have probably about doubled the SVR rate for geno 1s. I've heard of others getting these false positives, and hope this is the case, but I have to prepare for the other option. It would be unrealistic not to. Hope for the best and expect the worse until I hear otherwise. Thanks for the positive attitude! Mine is just not quite there as I'm still extremely toxic, still not feeling too good but know this will turn around very shortly. I'm using some PTO this week and should be back on track soon.

[lapis]

Oops didn't mean to double-post, oh well.  : )

[lapis]

I know you've had a rough ride, and still I'm keeping my fingers crossed for you.  Who knows, maybe the PI did it for you?  I also got a VL back that was <25 and had it repeated, it was UND, so they said it was a false positive.  Such a low value is likely to be a false positive, I've heard of others who've had the same thing happen.

I'm curious about what you said, that geno 1's relapse "even on PI's."  So far I haven't heard of anyone who took PI's, cleared, and relapsed, but maybe they just don't post here.  I'm interested to hear anything else you know about this.

Hang in there, Annie.  I'm hoping you'll get a really awesome surprise!

Lapis

[lapis]

I know you've had a rough ride, and still I'm keeping my fingers crossed for you.  Who knows, maybe the PI did it for you?  I also got a VL back that was <25 and had it repeated, it was UND, so they said it was a false positive.  Such a low value is likely to be a false positive, I've heard of others who've had the same thing happen.

I'm curious about what you said, that geno 1's relapse "even on PI's."  So far I haven't heard of anyone who took PI's, cleared, and relapsed, but maybe they just don't post here.  I'm interested to hear anything else you know about this.

Hang in there, Annie.  I'm hoping you'll get a really awesome surprise!

Lapis

[annieCinMD]

Pretty sure it was week 18. Definitely within 2 weeks of starting the PI. My second PCR went back up after a really nice drop from baseline to the first one. I think I was getting them every 2 weeks at that point but would have to look at my tracker to be positive. It hasn't been all smooth sailing for me anyway. Bad signs along the way.

[alagirl]

annieCin, at what point in your tx were you UND?