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

[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

[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?

[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

[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)

[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

[honey11]

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

[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.

[doglover28]

I'm sorry to hear about your relapse.  

Pam

[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.

[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

[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

[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!)

[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.

[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!

[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

[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

[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...

[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

[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

[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?

[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

[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

[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

[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