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!!!
;(

[Penelope1911]

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