I Relapsed

[friole]

I relapsed.  Picked up the PCR results today.
                     vl - 680,000 IU/mL   (1,700,000 copies)

I guess I knew this was coming, with those elevated liver enzymes, but I still can't get my brain wrapped around it.

My history --  I will be 59 in a couple of weeks.

Probably had hep C since late sixties or early seventies.  I have never had any symptoms except that I was getting more tired than I thought I should, and if I had more than 2 drinks in an evening, I felt it - recovery time was not as good, I guess you could say.  My liever enzymes have always been in the 202 (until these last 2 post tx tests)

Genotype 1a
Pre treatment VL - 1,520,000 IU/mL
Biopsy - Grade 1, Stage 1
Week 4 VL - about 2,800 IU/mL
Week 12 VL - 40 IU/mL  (LabCorp QuantaSure <2IU)
Week 20 VL - UND - (Quest Heptimax <5IU)
All tests after this were clear.

I went 56 weeks so I would have 36 clear weeks after my first sensitive PCR.  It wasn't enough, folks.  I am kicking myself for not doing the 72.  There are studies showing that those with low VL at 12 and clear at 24 can benefit from 72 weeks.  Other than Drusano, there are no studies about 36 weeks post clear.  Oh Cuteus, you were so right.

I am still too stunned to make any decisions today, but I guess I will be sticking around for awhile
Kathy

[friole]

My liver enzymes have always been in the 20's - not 202 - pre tx!

[northstar]

I am soooo sorry for how let down you must feel.
Are you planning on retreating, or are you gonna wait for the new drugs to come down the pike? By your numbers, looks like time may be on your side.
I have time to wait, but I will eventually retreat.

[cgd914]

I was just thinking about you.  So sorry to hear your negative results after so much hard work and effort you put into this you sure did deserve another UND.   Hopefully these results will not keep you down for long and you maybe able to consider treatment again or wait until something alittle more reliable comes along.  Again my utmost sympathies go out to you and your family.   You must have gotten good histological results for that treatment duration however.

[giddyup]

Sorry about you disapointing news.For many people the tx itself helps the liver.Not all of us respond to tx so don't kick yourself for not going 72, you did alot of tx.I'm 42 and have done 2 tx w/o clearing.I'm currently on maintenance.I hope you have good health. giddy

[Eyedeas]

It doesn't really help at this moment to know that you are not alone, but perhaps it will comfort you to know that many here understand how you're feeling all too well!

Kim

[FlGuy]

Very sorry to hear it Kathy.  Don't kick yourself about the 56 vs 72 - how do we ever really know?  I'd do what you did.

[mikesimon]

I am saddened by this. I think you're smart to take some time to figure out what to do next. Mike

[PasoPerson]

Oh Frijole, I am soooo sorry to read this.  Please keep your chin up and you know there's sure a reason for things happening.  I was down too, when I didn't clear.  Aha!  Maybe this means we can coordinate our re-treats and keep each other "up" during our next one.

Anyway, go eat ice cream tonight ... be glad you gave your liver a rest ... listen to what Rev___ mentioned about reversing the damage.  If I could just keep cirrohisis at bay, I would be on maintenance for the rest of my days, much less if the damage could be actually reversed even a little.

God bless,
Carolyn

[Tallahassee]

I'm so sorry... Take some time to regroup and continue fighting with new energy and determination! Something will eventually work!

[rawhide]

I share your disappointment and am sorry for the bad news. After failing treatment in August I needed a couple months to regroup and now I am ready to fight it again.  It's hard to take.
Laura

[Kalio1]

Im so sorry to hear this. You did what you needed to do at the time. Don't beat yourself up for not going longer.
The tx suppressed the virus for all that time.

How are you feeling? I know the enzymes have gone up some lately, but symptom wise how are you?

[NYgirl]

I don't know what to say right now my friend. I just don't. I need a few minutes to respond but don't want you to think in any way I'm not responding. You know...I just don't know what to say. I wish I could find the right gate and push you through. God are we going to be here forever together?

I wish you did the 72 with me BUT - perhaps this whole extended doesn't matter and the inevitable is just that. Don't beat yourself up. You did EVERYTHING to the BEST of your ability. It's just a suck as* disease and I hate it.

I can't stand this. I just can't. So not right.

[sfbaygirl]

I am so sorry to hear this!!! I can only imagine how bad you must feel. We all know what the chances are going in, but it doesn't make it any easier to know you weren't one of the 50%. My thoughts are with you!

[Oreos]

I'm so sorry to hear you've relapsed.  You are definitely smart to take some time and consider what's next.  Don't beat yourself up for "only" doing 56 weeks.  It takes someone very strong to do that.  

Take good care.

Gail

[Lady E]

I'm so sorry to hear about your disappointment. Please don't look back..take the time you need to regroup, and move forward with hope. I haven't been though what you've been through, but know that my prayers are with you.
((Hugs))
-E

[Califia]

It is hard finding the words for a situation like this.  I had really hoped you would make it, and that goes for all of us here who have carried the burden of this terrible disease and then placed our trust in a treatment which demands so much and frequently returns so little.  But there is still something a little hopeful your situation, as others have already pointed out.  Histologically speaking, you have time on your side, especially if the interferon you've taken has improved the mild fibrosis you started out with.  It could well have happened, you know.  And maybe after conferring with a trustworthy doctor or two you might choose to wait a bit longer for a shorter, more effective treatment to come down the pike.  I'm sorry you're still in the game, but you'll win the next round.  There's just no doubt about that.

[cajunlady]

I am lost for words.  SO SO SORRY, to hear that news.  After all we go through in tx, I am very worried about ending my treatment. I have 2 shots left and my biggest fear is a relapse.
I agree with others, take some very needed time off from this and regroup. Find yourself again and enjoy for awhile.  
I can't wait until someone conquers a treatment that will work for all, and on the first time out.  Shorter tx and less sides.

Don't beat yourself up, you did all you could.  If you want to let some steam go, write letter to Congress, hundreds of them.  If we all did this, maybe someone will finally get it.

Cajun

[cuteus]

I DID NOT WANT TO BE RIGHT!!!! not on this!  my eyes are welling in disbelief and anger!
I know I bugged you to continue, but even if you did the 72 there were no guarantees, just a better shot.
Kathy, I know I pester everyone to forget about the freaking Drusano model, especially my dear friends, and I will continue doing so.  You came so close...now, I am all for the new drugs to come around the corner, if that is what it will take.  
You gave tx a well thought, reasoned shot, took the risks and played your best cards. You know that your strain responds to tx, that is one of the lessons learned.  

I don't want to be right! I want the 56 wks to be enough! maybe if I close my eyes, this thread will not be here...

[can-do-man]

You know how i feel..... BTW thanks, and bet your not sour but sweet.

[TatorToT]

I lewft you a message on the flip side... I am sooo, SOOOOOooo sory about this... my heart just Aches for you as I have been there.... if you want to call you know how to find me... I Luv You!!!
;(

[mkeela]

Oh Kathy. :(  Stay as positive as you can, and like cuteous said, new treatments should be right around the corner. I am so sorry. Mequila

[friole]

I will tell the 10 or so people on the outside who knew I was treating that I was not sucessful, but none of them will really get it and their words will not mean nearly as much as those I have read here.  I know you all understand and I can feel your disappointment.

Scott, northstar, cgd, giddy, kim, FL, mike, carolyn, tallahassee, rawhide, kalio, deb, oreos califia, cajun, cuteus -- whew! didn't even know I knew so many people! Thank you

Especially to Scott, giddy,kim, FL, carolyn, - (did I miss anyone?) I join your ranks as a  fellow nonresponder - You are good people and we will all find a way out of this mess!

Carolyn - you never know.  We may just treat together again.

Califia - You are a wise sage and I will seek out answers from you and others

Cuteus - I will join you in the "cause against the Drusano model"
and you can bet I will be watching all of the 12 week results with great interest around here!

tator, cando, mkeela, angel -- thanks for caring.  May just take you up on that you big potato you!  Catch you all of the flip side, the tired side or whereever!

[returntosender]

I am very sorry Kath, I can only imagine how disappointing it must be.  I guess if there is a silver lining to this it is that you are a responder and in the end it is just a timing thing perhaps and at the very least you got a long break from the virus and hopefully got some healing done. You have been so kind and thoughtful to others, this isnt fair.

[jmjm530]

Very sorry about the relapse. Don't kick yourself at all. There is absolutely no way of knowing if the added twenty or so weeks would have helped. As Rev said earlier, he went 88 weeks and relapsed. So in fact you may have saved yourself 20 weeks more of treatment (and side effects) that would not have not made a difference. Moving forward, lots of interesting trials going on and as a stage 1, you have the opportunity to watch how things develop if that is your choice. Again, real sorry.

-- Jim

[goldyn]

Oh friole im so sorry that this awful fricken  virus has slipped back man friole you did everything you could you were on rescue drugs for a long time, extended your tx,im seriouse i did 48 weeks and I know i could not have extended any longer than that my heart was truly tired...you have helped your liver, and I know there will be a better tx around the corner, if my 3 month pcr comes back positive, i will wait and see whats next...
                  Blessings angie

[friole]

I emailed my  BCBS case manager (who voluntered to take my case because he had sucessfully treated for hep C and was SVR).

He is ready to send me to a hepatologist in Dallas - he said she was the head of "The Liver Institue" and Methodist Hospital for a consult. Anyone treating with her?????? He said he would aid me in anyway possible to "make my insurance work."

Sure is nice to have friends!

Chev, Jim, Goldyn, Return -- thanks.  I just know this will work out somehow

[SnoWav]

yep about half the people here get that news. Looking on the brighter side your liver may be in much better shape.I went from a 2/3 to a 0-1/1-2 after 48 weeks of TX so you may be much improved and able to wait awhile to sort out your next move. Even tho TX was not all that bad for me I will be waiting out the new TX or may not TX at all and just live with my little virus until death do us part. later

[illo]

Sorry Friole,

This is sad news.  I wish I could say
more, but there is nothing I can say that
would help.  You must be so very
disappointed.  Many prayers to you.

Will you try it again?

[Mister beagle bailey]

Kathy, I'm so sorry to hear this.  I relapsed also and thought I'd never get over it but believe me in time it get's easier to accept.  I know you don't want to hear this right now but it does, I've been there.
I have decided to wait for newer drugs then retreat with the ones on the market now.  I'm a 2B and before treating my viral load was 318,000, now it's in the millions.  Take a deep breath and relax your mind and body, you deserve it.  I know it's hard to believe but you'll feel better in time.  From your stats you don't have much damage and the tx bought you more time.  I'm 59 yrs also and at this age we need to enjoy our life so please try not to let this get you down for to long. We are all here for you.

Beagle

[sass_blue]

Sorry to hear about the bad news.  This must be a terribly hard time for you, especially when things looked like they were doing so well...My thoughts are with you

[Forseegood]

I am really sorry to hear this...very sorry...hope once you get adjusted to this news, you'll find the strength and hope you need to get through this, and I know you will...

[painterlady13]

ohhh Kathy  I am so sorry to hear about your PCR.  I know it is to early to make any decisions But have you discussed this with your dr and your options?
This definatly not what I wanted to hear. Is there an option of treating again? Is that something you even want to consider?  it takes so much out of you, and I know you were already tired of it.  we all are.  (Sorry I'm hating TX right now, 3 shots a week and a weekly cbc, just want to cry every time a needle gets close to me) (((((((Huggs my friend))))))))  Keep us posted and Take care of you!!!  And no matter what do what is right for you

[Pdilly]

I just read your news.   My gosh how terrible.   Glad you have a name of a good doctor.   Hopefully she can help.   What stage were you?   Do you have time to wait.  I know alot of us say that due to the new drugs comming out in the forsee future. I just hope they can help you more.   Anyway My prayers are with you lady.

Pat

[sunshine007]

I just wanted to say how sorry I am to hear this news.  I have been around this site and you have always had such wisdom and sincere nice words for me that I really feel badly hearing this news.  I know it's hard to hear this terrible news, but it will be okay no matter what you decide to do.  The good news is that you do have time on your side so please don't worry too much about it just yet.  You can take your time and decide what is best for you and your family.  Best wishes!

[relentless]

Sorry to hear about the results of your recent tests.  Based on your liver tests (stage 1 grade 1)prior to tx, it is likely that the liver healed somewhat during tx.  Since you had minimal damage after 30 years and your ast alt levels had always been low, chances are that you will leave the earth from something else before you expire due to liver relate problems.  I was 2,000,000 copies, stage 3, grade 3, high alt, ast for 30 years.  Did 48 weeks of Pegasys & Copeg.  Clear from first test and clear for 2 years post.  The doesn't seem to be a trend from one tx'er to another.  i had stopped drinking for 12 years prior to starting tx.  I think that help considerably.  I hope I stay clear and I hope you don't progress beoynd stage 1 grade 1.  I think you will be OK....keep in mind that being tired is a sympton of other things besides Hep C....like being 59....LOL....good luck.

[susan400]

Friole,

I'm SOoooo sorry to hear this.  You have been such a long timer at the boards here.  You've also been a huge support to everyone in the past.  I just have faith that if you decide to retreat that you will get a remission.  If it were me though, I'd hold out until these new drugs become available.  Trust me, I've treated enough times now that I feel that sometimes we can treat too many times and then, it's time to start looking at a new drug for the mix.  But, then again, there are others who cleared on their 2nd time around.  So, what do I know?   Just hang in there!  Don't give up the fight.  We're all plugging for you.  

Susan  (the 7-1/2 time treater!)

[52TELE]

Sorry to hear it...
I just got the results from my 34 week Heptimax , my VL is back up to 750. I'm done. I'm going to do the maintenance dose until I come up with a better idea.


You were the first person to respond to my very first post and the first person to make me feel like I belonged here , Thank you so much for that and good luck with whatever road you decide to take...

Mark

[omyst]

Really sorry to hear those words. At stage 1 and some new meds on the way there is real hope. Be kind to yourself, 56 weeks is a good fight.

Take care

[amommy]

I am so very sorry to hear this news :(  It just isn't fair that any of our friends here relapse.  I hope that once you can get past the initial shock of it all, you can see how beneficial the treatment was to your body.  You will be in my thoughts.

[doglover28]

I'm sorry to hear about your relapse.  

Pam

[avidreader]

Cr@p, cr@p, double cr@p. I just got back from my doc's 90 day post treatment appointment and read your bad news. I'm so sorry--our situations, ages, etc, were so similar I thought for sure we were going all of the way together. Take a big deep breath. Think of all of the time you bought for yourself and the gigantic break you gave to your liver by treating for a year. You did respond--you were able to beat the little buggers back. I'm sure with time, you will figure out what's right for you. Sound like your insurance cm is really in your court. I would go with the consult if you can swing it and then take your time and weigh your options. My doc says Vertex by 2008 and he thinks another drug designed to work Vertex that hasn't even started trials yet will be fast tracked and available by 2009/10. He also says that the numbers in the USA are now up to 6 million and he thinks we will finally see some more federal dollars thrown at research and development for a cure. AND ALL FOR YOU I HOPE! Hang in there and know you have lots of friends who do understand.

[honey11]

((((((hugs))))))  You are a sweetheart and my prayers are with you today!

[tulsatime]

I am so sorry. Words can not tell you how much. To be honest I am sitting here crying. This disease is so heart breaking. I am on round two. So,I can relate what shock you must be in. Hugs... Debi

[Algernon]

You are a champion and don't forget it.  You've helped so many people here - so many times.  We all love you and this news is piercing.  Just know that there are all these folks all around the country (the world even) who have been here with you all along and we're with you now.  Be good to yourself.  From Deep in the Heart of TX (that's Texas!), Deb (Algie)

[ladybug52]

This is the first time I have read a thread and said "OH NO!" out loud. My family thinks I'm crazy but it's just that you have been on here so long, held up so well and encouraged others so much.  Your bad news is my bad news. I really feel for you and am grieving for you too. I know words from a stranger sound shallow but after reading your posts and getting encouragement from you myself, I really want you to know I am saddened by this news. Don't look back and wonder what if? Just move forward and you have many friends to support you what ever you decide to do. Your initial biopsy results were good, at least you know the damage has to be minimal.
Take care
You are in my thoughts and prayers
Bug

[GoofyDad]

Oh mannnnnnnnnnnn...... that just completely took the wind out of my sails, friole. There are no words, so please just know that I'm thinking of you and sending positive thoughts your way as you come to grips with this new reality. Get in touch if you ever want to talk, OK?

[Pauly Boy]

I feel very badly about your news. In situations like this I always want to be able to say something that will help the other person deal with it. Unfortunately, I can only offer my hope and prayers that you will accept what has been laid on your plate and move on to the next opportunity you are given. I can only imagine what it must feel like... They say that sometimes things happen for a greater reason that I am not aware of yet; that as a human I don't always see the bigger picture and that when the time is right I'll find out why things happened the way they did. Used to be that I thought this to be foolish but, I've come to believe in this very strongly. It's given me much solace and eased a ton of pain in my life. Not only do I hope that this might, in some small way help to ease your burden, but I also wish that you come to see that bigger picture real soon!!! Sending you good vibes and my prayers. Stay Strong...   Pauly