virus relapse

[terca]

Hi Everybody,I wanted to update on my progress with the Roche trial.My trial nurse just called and told me the virus is back.That was my 30 day post checkup.I cleared in 4 weeks so my hopes were high.I am dealing with it the best I can.But I knew what my chances were.

[Bali05]

I feel for you.
They were recommending this trial to me before I started
and I  had decided to go for it but was than declined by Roche.

There are many people who had to give tx  a second  or more tries
and are SVR today.

it`s the old..... pick youself up , dust yourself of..... kind of thing.

Please keep us posted with your next battle plans.

[positude]

Terca;

I know we all saddened to hear this and you must be heartbroken over the news, but you know that there are many others who have gone through it and have now conquered the demon virus, don't give up. And for what it's worth, I would wait for the Telapravir if it were me. We will all be thinking about you.

(Insert a "GIANT HUG" here.)
Pos.

[IAmTheWalrus]

Bad news! I am so sorry to hear it. If you were in the placebo arm of the study, maybe you will get the chance to treat with the trial drug later. It seems like that has been done in other trials. As a fellow relapser, I really sympathize with. I hope you will weather this storm and have good health coming.

Brent

[Upbeat]

Do you know if you have IR or outright diabetes?

[zrjl]

So sorry to hear this. I haven't been on in awhile. I'm a little over halfway in 72 weeks of treatment. I think we started about the same time.
Hang in there - there is so much hope on the horizon!
Hugs, and strength.

[mk_]

Will be done next time, keep trying.
A poem to share with all-
----------------------------------------------------------------------------------------------
>Let me escape

Let me escape,
Be free, (wind for my tree and water for my flowers ),
Live self for self,
And drown the gods in me,
Or crush their viper heads beneath my foot.

No space, no space, you say,
But you'll not keep me in
Although your cage is strong.
My strength shall sap your own;
I'll cut through your dark cloud
To see the sun myself,
Pale and decayed, an ugly growth.

{Dylan Thomas}

[Cory255]

This is the first I've heard of a relapse with a polymearse inhibitor.  Again, I'm sorry for the news.  I also agree waiting for Telaprevir to be a good idea.  

Cory

[WriteItDown]

So sorry to hear this!  It really s**ks. I agree with copyman -- and you can still do Telaprevir when it comes out.

[copyman]

Sorry for the news.

I don't think it had anything to do with stopping at 24 weeks. As other studies have shown 24 weeks is all that is needed, even for G1's. telaprevir had even better SVR rates then 48 weeks, 92% with only 24 weeks of the PI. All PI's kill the virus within days if not hours. It is the Interferon & riba that have to "train" the immune system to keep the virus gone. I think you can still try Telaprevir when available in about a year.
Hang in there.

[spectda]

I think your riba reductions and not treating for 48 weeks was the culprit. Were you not allowed procrit ? You had such a great initial response that you will probably be successful in the future. Also since the drug was a polymerase inhibitor, I think you are still able to treat with telaprevir or boceprevir without issue. Treat for 48 weeks next time and insure the doc will use the rescue drugs rather then dose reduction. When you are over the shock and ready to try again, I think there is real hope. This tx is hell, and going through it twice is tough, but you will conquer it!

Be Well - Dave

[meakea]

I am sorry...truly very sorry for the relapse.  I wish you the best as you go forward in making a plan...  

[Cory255]

That's terrible news Terca.  I'm so sorry.  Good news is you responded to the meds, and maybe next time you can switch to something stronger.  

Cory

[sunqueen]

I'm very sorry and wish you success next time.

[RCM829]

Thanks Trinity, our posts must have crossed at about the same time but you explained the stages in better detail than I.

[RCM829]

Hi there-

I really do feel your disappointment - right in the pit of my stomach. I want you to know how proud of you I am for giving this your best try. I just know you will evenutally reach SVR...

As you probably know, stage 2 is considered somewhere in the middle of the spectrum. You have mild to moderate fibrosis but it has not yet "bridged", otherwise you would be staged at 3. I believe the grade is the amount of inflammation. At the time of your last biopsy, you liver appears to be have been quite inflamed. Perhaps someone else can expand on this  more but I wanted to extend my best wishes nontheless.

Take care - we're all thinking of you.

[Magnum]

There will be more and more solutions and drugs coming out now that Merck and Schering have started the race. The race after all, is about money. And who is more adapt at grabbing the most money possible than banks, oil companies and pharmaceutical companies. Not trying to be critical here, but the race is on. Hang in there. There may well be drugs without the awful and most times brutal side effects in the not so distant future. I'm waiting along with you and the rest of us...

Magnum

[Trinity4]

Stage 1 indicates enlargement of the portal areas by fibrosis; stage 2 indicates fibrosis extending out from the portal areas with rare bridges between portal areas; stage 3 indicates many bridges of fibrosis that link up portal and central areas of the liver; and stage 4 indicates cirrhosis.

Your doctor is correct.  Stage 2 is not that bad and you have time to wait for newer treatments.  I don't relish the idea of having to treat again either but what else can we do?  Your liver had a nice 6 month break, mine had an 18 month break.  Things will get back in perspective, you'll pick up where you left off and one day both of us will beat this bas-tard disease down.  

Wishing you a speedy recovery,
Trinity

[terca]

Thank you so much for all your kind words.It is nice to know I am not going through this alone.I did start on the trial drug with riba and inf.The trial drug was stopped at 8 weeks.I started on 180mg of inf and 1000 mg of riba and I am not sure what the mg of trial drug was.I took 1 pill of trial drug twice a day.The riba was later reduced to 800mg and then to 600 mg because of severe anemia.My trial nurse told me today my viral reading was 160,000.I have 1 question for somebody.Could someone tell how bad my liver is with a biopsy of stage 2 and grade 4.My doctor says it is not too bad.But I know how doctors sugar coat things sometime.I am not looking forward to going through this again.

[GSDgirl]

I am so sorry to hear of your results.  Good Luck in the future

Denise

[jt57]

I feel your disappointment!  We fight this battle so hard, feel we have it beat, then WHAM!  Been there.  But you can't give up.  There are options.  Get yourself together, get strong again, have a life for awhile!!!!!!!!    And then exercise your  options, because you do have them

I am so sorry.  I am taking my 24th shot tomorrow.  rvr at 4 wks  1b.   praying this is it for me...but you never know.   I relapsed last time..

Hang in there.

Jean

[skersj]

I am at a loss for words but my heart goes out to you.

[epiphiny]

Hi there, I am so sorry to hear this news.

I was on the phase 1a trials for this drug, also achieved RVR and was scheduled to stop at 24 weeks.  As I was a previous non-responder (Geno 3A) I fought very hard to continue treatment past the 24 weeks and ended up going the full 48 weeks of standard combo treatment after the trial finished. I did have a minor blip with a breakthrough after study drug finished and after a riba reduction due to anemia but was able to get back to UND when my riba dose was raised again. All these factors were part of my decision to prolong treatment.

First of all - did they give you a Viral Load count when they gave you your results on the phone? I don't want to raise your hopes BUT it is possible to get a false reading and if the VL is pretty minimal this may be the case for you.  I think NYGirl has had this experience. and will be able to go into more detail.

Also would you mind posting the dosages of INF/Riba and study drug you received? And did you have to take any riba reductions to due to low hbg? I know you probably don't want to think about such things today but it is important to know this info so that your treatment can be modified if/when you decide to treat again.

First things first tho - what was the VL reading from your latest test?  Also, I would be inclined to request another test. Mistakes can and do happen.

My thoughts are with you :)

Epi.

[mikesimon]

I am sorry about your results.
I wish you well.
Mike

[spectda]

This is very difficult news for you after going through tx. Although I am sure today is not the day you want to treat again, It seems to me that you have options. From what I have read, the fact that the drug is a polymerase inhibitor rather then a protease inhibitor should mean that resistance will not be an issue in the future. If you had a lead in without soc, and even if you did not, you were rvr. I would imagine that there is a good chance that soc might have cured you if you had gone 48 weeks. I think you have an excellent chance of svr with longer treatment.

I know that's not on todays agenda, but I think there is hope. I am very sorry that you are going through this painful experience.
- Dave