I've Relapsed

[Johnare]

After 48 weeks of treatment.

Und since week 12. Stopped treatment 6wks ago. Und at that time. Gen. 1a

Just got off the phone with MA regarding 30 day RNA test and my viral load is at 32,000.

Havent spoken to the GI yet. He will call tomorrow or Thurs.

I've already made an appointment with a Hepatologist for Dec. 18.

I'm so down and depressed right now. I'm just sitting here in shock.

J.

[pjhep80]

oh that just ******* ***** so bad...

im so sad for you...

hang in there....

[fretboard]

Dang!!  Sorry to hear about your news.  That's just so unfair, I can understand that you're feeling depressed for sure.  Take your time on making up your mind as far as what you will do and only move forward when you hear something different.  Maybe add a PI study to the mix, I'm sure you'll talk to your new Heptologist about it.  I'm in the Boceprevir study and there's also the telaprevir drug.  good luck

[can-do-man]

Oh man i hate hearing that, if feels just like a swift kick in the gut. Good news is you was a responder. (I know that doesn't help much right now) But being und at week 12 makes it look real good for one of these new P I's..... Sorry my friend, wishing you the best.

cando

[Trinity4]

Damn it!  Damn it!  Damn it!
So sorry.  I hate the reality of this treatment.  Not everyone will clear, even under the best of circumstances.  Give your body a well deserved rest and the future is looking so much more promising for us in terms of treatment and SVR rates.  Keep going, don't give up.  

Trin

[hepcD]

I am sorry your first tx failed. I am glad that you are already pursing plan B. It takes a lot of guts to tx . I commend you for that.

[Marcia2202]

I am so very sorry to hear that you have relapsed. You're in my thoughts. Hope you will find the strength to digest these bad news and to find new courage.

Warm greetings, Marcia

[charm27]

@#$%&!!!!!!!!!!!!  good new is you are a responder....I know what a jolt in the heart this is.
You will come thru this !

Im sorry- DANG!
Unfortunately this is all a realization  for all of us.
And it sux!

Charm

[copyman]

I'm truely sorry for this set back but this fight isn't over! you had this piece of $hit dragon dead at one point and you will again. I like the idea of re-treating with one of the new drugs in trials. First do a PCR re-test to see if maybe it was wrong, contaminated, etc. If not regroup and if minimal liver damage wait for new drugs in a few years or try and get into a trial sooner. Best of luck

[Johnare]

Thanks for the kind support. I'm kinda feeling like I did when I first found out I had HVC and what the Tx involved.

I was treated by a GI  whom I was very disappointed with and almost changed to another Dr. several times during Tx. He won't be part of my team next time around.

I'll wait to see what the Hepatologist has to say before I make any decisions. I'm thinking for now that I will just wait until the new drugs are available in 2-3 years. My liver damage was only at stage 1 a year ago and I figure I wouldn't be able to start re-Tx for a year, and that would be for 72wks. So why not just wait a little longer.

J.

[Johnare]

I haven't spoken to the GI directly, but I'm also pondering the possibility of re-starting Tx ASAP for another 24 wks. I'm wondering if it's too late to do that. I took my last shot on 10/11.

[can-do-man]

Yeah it would be to late to restart your last tx. Hey being only a stage 1 and doing 48 weeks of tx had to do your liver some good. So not all is lost. Seeing a Hepatologist is a good ideal.

[meakea]

I am so sorry!  The reaction I get to see those dreaded words "I've relapsed" is like a swift kick in the gut so I can only imagine what it feels like to actually have the words used about one's self.  

You have a great attitude about getting another appt with a Hep...good for you!!

[frijole]

32,000 is awfully low.  I would sure opt to get the test rerun.  What did your liver enzymes do post tx?  Before I had my PCR, my liver enzymes spiked signaling a relapse to me.
If you have relapsed I am sorry.  It is tough to deal with.  First regroup and heal.  Make decisions later.
frijole

[cindyh113]

Go kick something and then get going again! There is still hope and new treatment coming. This could be me in a few months and you are NOT alone!
cindy

[jankar]

Devastating for you after all that awful treatment - such a lottery, but the new treatments are looking good.  Take hope.  I feel for you - we all have a chance of being there and is  the hardest thing of all.   Jankar

[zazza]

So sorry. I saw my ex relapse so I know IT HURTS. You will beat it next time!

[miked]

Hi Johnare,

Sorry to hear about your setback.

I'm assuming that you did 48 weeks of SOC (INF +RBV).  

Unlike you, on my first tx I got the 2log drop at Week12 but not UND.  Then I went into a slow, gradual decline until Week32 when it went up.  Stop tx, game over.

It really sucXed at that time and I felt very desperate,

Like you I was thinking about getting back on a tx ASAP while my VL was down.  I immediately scheduled an appointment with Dr. Bennett Cecil in Louisville, KY because of his work with changing Interferons, off-label regimens, extended treatments, etc,

Before the appointment with Dr. Cecil, I thought about how bad my body had deteriorated (lost 40 Lbs., rashes, depressed, irritable.....) and decided to regroup.  Oh yeah, I had the luxury of 0.5 liver damage and zero inflammation so my decision was easy.  Regroup, get my body and head back in order and find the best path forward.

About 18-20 months after stopping my first tx, I applied and was accepted into the Vertex Prove 3 clinical trial at Indiana University in Indianapolis.  

Luck was with me because I got into the trial arm WITH the VX950/Ribivirin/INF and I lucked out by being in the arm with only 24 weeks of tx.  

I went UND somewhere between Week 1 and Week2 and stayed that way throughout the trial AND remained UND for 48 weeks AFTER the trial.  I'm still UND only I've forgotten how many weeks have gone by because I'm off living my life without HCV.  I'm not gloating or bragging but wanting to communicate that there's hope.

Johnare - My message to you is it isn't over until you decide its over.  Right now you need to weigh all your options (things like potential treatments, your liver damage, your age, work situation, etc.) and move forward.  If you have minimal damage like I did, it's OK to take a break from treatment too.

I've given you a couple things to look at.  VX950 clinical trials are recruiting for failed patients.  Dr. Cecil in Louisville is doing some interesting work.  There's options.

What's your situation like?  I can be reached here or please don't hesitate to send me an in-mail.

Take care,

miked

[Deb_c430]

I am so sorry,  those are such hard words to hear, as Trin said, it happens.

But have courage!   it has helped your liver,  so all is not for naught!    

Some one up there said it. Kick something then carry on with plan b! Rest your brain and body then carry on!

[comeagain]

Its five with me that I know of who been writing in on this thread already, that has been where you are , its aweful being there hate that shock.
Time will heal i think frijolle said it all regroup heal then make decision.

Stay updated so you can take the optimal aproach next time, with you liver damage which very likely is less now after tx but even if not you can wait.
I woulden´t go for any trials and risk to low doses or placebo as its looking promising for new meds to be released soon.

My heart goes out to you as I know everyones elses also do .

God bless

ca

[foofighter]

Terrible news. I am so sorry.

There are new meds with your name on them and approval not too far down the road. Next time, you will triumph.

Foo

[sfwandwow]

I Hate bad news......join the crowd... its getting hot in here..................

[orleans]

So, so sorry. To say this is a real bummer is a mega under statement. jerry

[Johnare]

Now that the shock has subsided a bit, I'm going to visit the Hepatologist for a second opinion of what I should do from here. I'm pretty sure I'm just going to moniter my virus levels for a while but, at this point I'm wondering if this virus can kill me before something else does. I'm 55 so I figure I only have about 30 years left to live anyway. My VL was only 1,200,000 when I started and that was after having HCV for about 35 years and only being at stage 1.

I'm also going to find out when he thinks Vertex will release the VX950-Telaprevir. I know 2011 has been discussed here so hopefully the drug trial will stay on track and it will be available then. I've been doing some reading today and the response rate for Relapsers is very encouraging.

Thanks again for the support. The people here are really awesome.

J

[alijee]

very very sorry to hear that.