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3 months post tx pcr- relapsed!
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3 months post tx pcr- relapsed!

  My Doctor called tonight and my 3 month post pcr was 19,600...My liver enzymes were 270 and 320!   I did 48 weeks and never missed a dose. My biopsy was stage3 grade4 so I knew the odds weren't good. But I have been feeling so good since 2 weeks off meds. I have energy and look so much better.(except for the hair)    My Dr. is referring me to a different Dr. then the one I had for treatment. I'm going to consult with him and see what he suggests. I guess I'll just go from here and see whats next.    -Libby
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33 Comments Post a Comment
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Avatar_m_tn
I'm so sorry to hear your bad news.  What's your genotype and at what point did you go undetectable?
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86075_tn?1238118691
all I know is that I have friends that have had the same thing happen as you, and they did feel better for a long time afterward, besides which, they prob bought more time for themselves till the better drugs are available...best of luck with this, you sound like a positive person which, of course, will hold you in good stead...
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217229_tn?1192766004
Hugs ejoli --- Babe - I have to go with Forsee on this one...  Sending you super warm thoughts!
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Avatar_f_tn
So sorry.  But Forsee is right on about this - your time will come.  Science is on the march!  There are new treatments every day, and one of them is for you.
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Avatar_m_tn
Hi, I searched the archives and see that you weren't to happy with your tx doc.  I think you mentioned searching KC for a Hepatologist, if so I wanted to let you know I'm at KU and they have a team of Hepatologists and KU participates in clinical studies.  

I feel for you after 48 weeks of tx, but perhaps you have slowed or paused the progression of cirrhosis.  If I can help let me know.

kcmike
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173975_tn?1216261375
So sorry to hear your news, ejo;i.

All my best to you,

wyntre
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Avatar_m_tn
What a bummer to hear that news after all the hard work you put into treatment. I relapsed after my previous treatment, and I DID feel a lot better for quite a long time before we decided I was ready for another go at therapy. My energy returned to a level that I hadn't for several years, and I carried on.

Can I ask... was the 3 month test the first one you did after end of treatment, or were there earlier ones which were und?

Best luck to you, keep your spirits up.
Mark
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80575_tn?1207135964
On your 48 week tx, did you get a 2+ log drop at Week 12 or before and then go on to become UND?  If so there was good news out of The Liver Meeting last week for EVR (early virological responders) people on Vertex VX950 + Interferon + Ribirvirin.  The good news is 24 weeks seems to be one of the best protocols for this.
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100019_tn?1335923317
Same thing happened to me so I totally relate.  It's kind of like the bottom drops out of your stomach and the world stands still for a moment till you can assimilate the news.

I'm so sorry.
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Avatar_n_tn
as bad as this may sound i believe all treaters, especially 1a's should approach treatment as a 2 round process. it only makes common sense based on 40% to 50% odds. before the favorable reviews of new drugs i would have said 3 rounds because of resistance. it seems any other approach sets you up for an emotional roller coaster.
of course, nothing can soften the  blow of a relapse but your final success is just a matter of time in my opinion. i fantasize every day about quitting my treatment early based on the option of winning a 2nd round with better drugs. its just a fantasy though, im forced to push on through. as sad as it is, stories such as yours  help the rest of us extended treaters march forward. your setback  is a stern reminder of just how tough this game is.
on a good note, i hope that you are in a position to wait for new meds, maybe your 2nd round will be a 24 month breeze.

the invincible warriors are never defeated.
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223152_tn?1346981971
Oh no, Libby, I sure didn't want to read   this.  I am so sorry.    You tried so hard.  I can't remember where you were at at week 12. If there is any consolation, you are in a large band of brothers.  I welcome you in and we will see our way out in time.
Kathy
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Avatar_f_tn
I was undetectable at week 12 of tx (wasn't tested before then) and also at 24, 36, and 48 weeks. I wasn't tested after that till 3 months post. Honestly I knew the odds were against me beacuse of being stage 3 . I probably should have treated 72 weeks but don't think my bloodwork would have held up. I know what I 'm looking for in a Dr. now and will look into trials. I still don't think I can mess around too long. Thanks for your thoughts.     -Libby
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179856_tn?1333550962
I don't think being stage 3 would have been the deciding over riding factor of treating for 72 weeks since you were UND at week 12.  Usually it's people who are NOT UND at 12 but are by 24 that do it.

So stop beating yourself up. Nobody know why these things happen -they just suck.

I'm so sorry for the results...hang in there good things are coming for you!
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96938_tn?1189803458
Sorry to hear the news but good to read that you are feeling somewhat better after tx.  I'd suggest taking some time and complete your recovery from tx and then, as you mention, see the new doc and devise the next plan. Take care.
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Avatar_m_tn
Sorry about your relapse. Hopefully your liver has benefited from the treatment and your new doctor will come up with a good plan moving forward.

-- Jim
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250084_tn?1303311035
  So sorry! As all said, hopefully it has helped slow things down.

    Good luck with a new plan and Dr.

                                                                  LL
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Avatar_m_tn
I am sorry about your news. I wish you good luck. Mike
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Avatar_n_tn
The great news from all of this is that you ARE a good responder.  You definitely CAN eradicate the virus!  Either a longer course, (72 weeks minimum) with maximum ribavirin dosing, and probably Procrit....or one of the newer trial protocols using telaprevir (Vertex), along with SOC, probably using the Vertex drug for 24 weeks, along with SOC, and then running the SOC out to 48 weeks or longer.

I am certain that you can eradicate the virus, judging from your response to the tx.  Unfortunately you did not treat long enough, and you could not have known that this would happen.  Now you know what you need to do.  Many of us have had to go through the same scenario, so don't feel alone.  Recuperate, get stronger, and get ready to hit it head on and get your SVR.  Your odds are very high for total success.

DoubleDose
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Avatar_f_tn
  Thanks for the positive thoughts. I take it from your name that you've treated twice. I don't really want to but want to get it over as soon as possible if I have to.    -Libby
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315094_tn?1201393650
Yikes, that really sux. This puts you in the relapser catagory not the non responder catagory, that's way better. There is more success rates for retreatment and new therapies. Another thing is that that the entire time you were UND gave your liver much needed recoup time. I just started this emotional rollercoaster of tx.
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223152_tn?1346981971
Did they give you sensitive tests?  WEre they <50 or were they lower?  That makes it even more of a blow, when you were clear at 12.  Like DD said, at least you ARE a responder.
frijole
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Avatar_f_tn

You did respond and nicely too frijole.  How could you have known?  You were clear at 12 weeks and stayed clear throughout!  The relapse is a set back alright.   Let your doctor make a battle plan, you rest up, get strong then go out and kill 'em again.  I know you can.

R
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Avatar_f_tn
I'm so sorry ejoli, I posted to frijole in error. I confused your names & my fingers work faster than my brain tonight.  
R
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12773_tn?1328916786
So sorry to hear your news.. Today was not a good day for a couple.   It makes it so discouraging, but then again there are those who got Good news..   I have tonight and one more, and praying for another UND.  
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Avatar_f_tn
I know how hard it is to hear this disappointing news, don't give up, there will be something else out there for us, I'm not giving up!   Susan
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264121_tn?1313033056
I'm so sorry to hear about your recent tests.  I do agree with what Forseegood about the probability that treating actually preserved your liver longer even though you've unfortunately had a three month post breaththrough.
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180992_tn?1383377657
I know how you feel.  Thanks for your kind words in my thread on the other side.  Yep we're in the same boat like many others on this sight.  I'm not sure what I'm going to do next. I think I want a biopsy since my last was Jan. 2005.  I'll do a little research on Fibrosure and Fibroscan.  My last biopsy was a bad one so these other options are appealing. I'll see where I'm at on the fibrosis scale and then go from there.  Keep me posted on your plans. I'll do the same.  I sure know a lot more for next time around thanks to everyone on this sight.  I started as a mere nymph and now am a warrior.
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Avatar_n_tn
Yes, I have treated twice, but the DD name is due to doing approximately a dose twice the standard amount on my second and successful tx, with Peg-Intron.  I was a partial responder on my first go round, almost ten years ago, and ended up increasing the Intron to daily for several months after three months of 3X/week Intron and Riba.  I still remained detected, and so switched to Infergen, daily dosing at 15 mcg.  My first two weeks on Infergen I did the 15 mcg. TWO TIMES per day, which almost killed me, but got me undetected in two weeks.  I continued for another five months on daily Infergen and Riba, but had to cut the Ribavirin in half due to severe anemia.  (No Procrit available back then).  

I finished undetected, after almost five months at non-detected, and a total of 14 months on that tx, using various combinations of drugs nad frequencise.  I relapsed after one month off of therapy, as I had expected.  I really felt that I needed to remain undetected for almost a year while on tx, and was very upset that anemia forced me off tx.  

My second round was with Peg-Intron (doubledose) and full Ribavirin along with plenty of Procrit, two times per week.  I did a total of 72 weeks, and was undetected from week 19 until the very end.  I have been SVR for over four years now, and am happy that I did the extended regimen.  Best of luck to you.  You will beat this virus!!!!  Stick with it, and use the rescue drugs as needed, rather than cutting dosages.  Use high amounts of Ribavirin, to prevent relapse.  

DoubleDose
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Avatar_f_tn
  Wow! What a rough ride you have had. I'm so glad that it finally worked. Thanks for your insight and experience. I still have alot of hope.      -Libby
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Avatar_n_tn
Excuse the typos in the last post.  I don't usually proof my posts, and I type very fast with two fingers!!!  So I usually generate some indecipherable words!

DD
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254544_tn?1310779332
So sorry about your relapse.  It does suck.  I know.  I found out on 9/24 that I relapsed and I also did the 48 weeks.  I was 6 months post when I found out.  I'll be going to Shands/Univ of Florida on Tuesday to find out what my options are.  I've got an RA issue that has to be addressed when making a 2nd round tx decision.

Good luck in what ever you decise.

Mouse
P.S.  I'm a 1a, Stage 3, Grade 3
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146021_tn?1237208487
Your name reminds me of the Enjoli commercial where the woman is singing "I can bring home the bacon, fry it up in a pan and never never never let you forget you're a man! Because I'm a woooman!"
I can never get that tune out of my head....
But this isn't about me and I'm sorry to hear of your relapse. I think Forsee, Flguy and DD all had good points...you did respond....you feel better...and you're liver got a break. It stinks that you didn't svr also.
But hey, you're a fighter because......your're a wooooman!
Hugs,
Bug
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179355_tn?1207410851
Must be something in the water!  I'm sorry to hear about your relapse. Too many of them this year. Hope is what we got plenty of so lets hope the next time we'll beat the dragon! Hang in there!
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