RELAPSED

[agatha56]

Hi everyone. well, haven't been here since about 3 months ago. i finished tx. in July and in Oct. I relapsed. Lucky me, huh? I have geno 2 and thought i had it licked. Anyway, depressed as hell. I had grade 2 stage 2 when I began tx. Don"t know how long it takes to progress. I told Doc I will wait for awhile and he said he doesn't blame me. Are theyr any new txs coming?

[GreatBird]

I'm so sorry to hear you've relapsed!

I don't know about anything for 2's (I'm a 1 and that's what's been on my radar). Mostly I've seen they go longer the second time around to 48. Maybe someone will chime in with better information.

[Isobella]

Agatha, so sorry to hear of your relapse.  I don't have any info on geno 2's but just wanted to offer a ((((HUG))))

Isobella

[jdwithhcv]

What can I say?  I have no information to offer about new tx, apart from what is already well known, but I did want to post and say how sorry I am to hear that your dragon is back.  I hope one of the new PI drugs will do the trick for you.  Best of luck.

jd

[newleaf09]

Have you been hearing about the new protease inhibitors (Teleprevir and Boceprevir) that interfere with viral reproduction?  They are effective on geno 2.  They are in the final stages of FDA trials now and are expected to be on the market in 2011.   Hopefully you can hold off until they come out.  Sorry you had to go through the first treatment for disappointing results and it must feel unbelieveably disappointing to get so close.  So sorry.

[justme53]

I am so sorry to hear about the relapse. Has your Dr. presented any other options after you take a well deserved break?  Keeping my fingers crossed for you that the new drugs will do as advertised and get you that SVR.

Peace, Pam

[agatha56]

He said that I could do the interferon shots 3-5x weekly and that relapsers only have a 50% chance of SVR. He was not very encouraging. I wish I knew a hepatologist close to me in the houston area or clinical trials somewhere.

[epiphiny]

I am so sorry to hear this news.  I know how it feels to have failed tx especially when you thought you had it licked.  There are definately new drugs ahead, as Newleaf mentioned, and also a polymerase inhibitor that is showing great promise (R7128).

I endured 6 month of tx only to find it didn't work, in fact I never went UND the whole time.  At least you know you responded to the meds and perhaps it is just a case of a longer treatment, more Riba and a new drug.  I had a gap of 5 years before I retreated and my liver damage had actually gone down a stage from my first tx and a healthier lifestyle.

You could keep your eye out for trials for relapsers and non-responders as they are targetting this 'hard to treat' population with the new meds.

All the best to you.

Epi

[epiphiny]

Here is the link to the clinical trials website:

http://www.clinicaltrials.gov/ct2/home

[DragonSlayer45]

I can only imagine what you must be feeling after hearing that you relapsed. My heart goes out to you. Hang in there.

I agree with the above posts and was going to mention Epi's trial. She was a geno 2 relapser. The R7128 trial is a good one. It has been show to be effective on multiple genotypes. I participated in the same trial but I was a geno 1 naive. I treated for 48 weeks and cleared at week 4 (as did Epi).

Again hang in there and I will say a prayer for you. I would be pretty devastated if I heard that news too.

[Marcia2202]

I'm so so sorry to hear about your relapse. When you are ready to get out there and research about a new tx, there will be people here to help.

The most important is to look at your first treatment and to find out what could have gone wrong. A second treatment should always be attacked in a different manner as to the first. Maybe higher doses of Riba. Or maybe you have some underlying problems which worked against a positive outcome of treatment.

Big hugs,

Marcia

[GSDgirl]

I am so sorry to hear of your bad news.  Wishing you the best of luck on the next go 'round

Denise

[Tippyclubb]

I'm so sorry Agatha and know how hard tx was for you.  Take a break and when your ready to tx again do so with one of the PI's as your chances of success are higher.

[comeagain]

I´ve been where you are .

It was devastaing the first month or so after I recived the message.

My doc wanted me to retreat 6 months post, participate in a study for relapsers.
I thought it was to early waited  4 more months, then retreated with 400mg more riba a day and 180iu/mg pegasys instead of 100mg pegintron and48 weeks instead of 24.

Now I´m SVR since 11months.
You are gonna make it next time Take a break and regroup.

Yes and make sure you get a skilled doc a hepatologist next time even if you have to travel to get one.

Your doc doesn´t sound as though his up to date, suggesting infergen instead of informing you of the new meds comming up.

My heart goes out to you!!

ca

[StormRider]

Hi Agatha,

Very sorry to hear about your relapse. I'm also from the Houston area, below a a couple of links to some very good liver specialists here in Houston they are located in the Texas Medical Center.
I finished treatment in May with the Boceprevir trial, declared SVR last week. I would personally recommend Texas Liver Specialists, Dr. Galati is a excellent Hepatologist and is on top of all the newest treatments and trials that may be available. St. Lukes is another good choice and also offer different trials. Very good info on both sites. Wishing you all the best in your journey and hope the links can provide you with some better options for your next round.

http://www.texasliver.com/     Dr. Galati

http://www.texasliver.org/       St. Lukes

[agatha56]

Thank you everyone for taking the time to respond and I am going to try the Houston Hepatologists this time. Maybe this Doc of mine wasn"t the best way to go. Since the news I have been having pain in my back and upper right abdomen. I hope it is psychological.
Thanks again!!

[nygirl7]

OH Agatha I'm so sorry I thought for sure you were well done with this damn disease.

Since you are a stage 2 (heck probably didn't go up during this time you were treating right?) I'd see about waiting for the PIs that have successfully worked on people like Andiamo who treated 100 times but finally with the addition got success!

Just make sure you WATCH and wait if you decide to do that...that watching part is important.  

Again you know there aren't any words to express how terrible this is - we're all so sorry.

(PS The Hepas in Houston sound wonderful...a good doctor with a really aggressive approach probably can beat this thing for you!)

[franke566]

Try the Texas Liver Foundation in the Houston Med. Center.
Dr Alan Glombicki or Dr Moises Nevah, both Hepatologists Specialists for Baylor-always have studys going.  Best wishes

[frijole]

I am so sorry.  I know how devastating this news is.  Right now you should probably just do nothing and wait on research.  I am not sure the PIs are a effective on Geno 2s but I have not kept up on the research for Geno 2 since I am 1.   In any event Infergen - the 3-5x a week interferon that your doc spoke of is a rough road from my reading on this forum.  I would check in with a good hepatologist as some have suggested in this thread.  At least you are in a big metroplex where you can go to one.

Good luck
frijole

[Kathy73]

You are in my thoughts and prayers.
Kathy

[jessiejames1973]

so sorry for you
x
hugs

[DD9th]

I'm so sorry for your relapse.  Don't give up.  

[can-do-man]

Sorry to hear this, We have plenty of room on the relapse bench waiting to catch the SVR bus. You will get there, take some time off........Best to you

cando

[kciav]

so sorry :((

[portann]

I' m so very sorry and sad to hear this. There are many people on this forum who've been where you are now but with a new plan of action went on to succeed. They are an inspiration.

And there's so much promise with the added PI's.

SVR will one day be yours, Agatha. You're in my thoughts.