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.

[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!

[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

[zazza]

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

[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

[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

[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