Can I do this again?

[Gladitsnotworse]

I went thru treatment with pegintron in 2005 and did 48 weeks. Viral load 8 million, geno 1a, normal weight, age mid 40's, female, stage 1 on biopsy very minimal damage.  Undetectable 12 weeks into treatment until 4 months post treatment. My doc wants me to do pregintron again, but promises to provide procrit, etc, instead of reducing ribaviron this time. I talked him into letting me do pegasys.
The med company wants me to call back with a delivery date for meds. Now, I am having second thoughts. I really dont want to do this again. Should I do pegasys or pegintron? What about the Ideal study? I thought the results were to be out by now. I guess I am wanting a sure thing. I just dont want to give up another year of my life for nothing.

Do I sound frantic? I dont mean to. Could anyone think of anything encouraging to say to me?

Thanks guys,

[charm27]

I only have number----------the hepatology dept. #305-243-2325-

[sunspot]

Do you have an email address for the good doctor Schiff?

[charm27]

Go online to U of U-hepatology dept.-you will see them both!

[charm27]

I will question it again when I see him in November. I feel like a numbnut but I need to know why.

Thanks for all the info-------------

[charm27]

I met Dr. Schiff for 10 seconds- I am working with Dr. Lennox Jeffers his other half........
I really like Dr. Jeffers You will be in good hands.
He will probably tell you to wait for new drugs----the best of luck

[HappyDeb]

you also see Dr. schieff ? On jan. 29th, this will be my first time seeing him. He will be my second opinion in treating. My first Hep. DR. is in naples Fl. were I live. I am only 1@1/2 hrs. away from Miami. How do you like the Dr. and he is as good as they say, with the knowledge we are all looking for with this nasty virus ? I am interested in your opinion of the Dr.


                                   Debbie:)

[mremeet]

Your doctor may have been trying to tell you that if you treat now with SOC and make it successfully all the way through (i.e achieve UND status by week 24 and remain UND for the remaining 24), but then end up relapsing afterwards - then the trial you may want to get into will accept you. But if you treat with SOC and either never achieve an UND status, or you do achieve UND status but experience a viral rebound while still on the drugs, then you would be perceived as being a non-responder. Non-responders are often excluded from drug trials that involve SOC treatment drugs. So maybe that's what he meant, and yes it is a little confusing!

[charm27]

We go to the same doctors! At your low level he probably willl tell you to wait for new drugs...
I was told that and Im a stage 2--I wanted to give it a shot though with SOC.

GOOD LUCK

[HappyDeb]

Thank you so much for that info. I will persue that. I have an appt. with a Dr. Eugene Schieff at the university of Miami on Jan. 29th. He is a well known hep. Doc. He travels all over the world and does seminars on Hep. C. I will ask him also. Oh by the way I live in the normal side of Naples, Not that rich, isn't it crazy how mush money is here. Maybe some day it will come all our way. THanks again my friend.


                                         Debbie:)

[charm27]

BTW this will be my first time at tx..start in a couple of weeks. Thats the reason I wanted to know my options if it doesnt work.

Thank again
Much Appreciated.

[charm27]

oh god thanks for that reply. I  asked my hepatologist 3x and he said 3x if  I take SOC now which I start in a couple of weeks ..and if within the 12 weeks Im not responding or whatever.I could wait for new drugs. If I start tx and after I complete SOC should the virus come back I CANNOT TREAT WITH NEW DRUGS. This didnt make sense to me either but did inquire 3x. I felt really silly to ask the same question again. (Although I knew logically it didnt make sense) Maybe the doc didnt understand whAT i WAS SAYING?? ANYWAY..its been eating away atme 24/7. If this fails would like to know I have an option.
THANK YOU THANK YOU THANK YOU
Congratulationson your SVR!

[mremeet]

First call or email Vertex and ask them for a directory of hospitals and research doctors that will be participating in the Vertex Telaprevir phase 3 trial. Hopefully they'll give that to you. Also go to the clinicaltrials.gov site and see what you can dig up there. Also call your local hospitals and try your best to get in touch with someone who would know if they're going to participate in the Vertex Telaprevir phase 3 trial (thats how I got into Prove 1). Also ask around here, someone might already know if there's a place down in mid FLA that is running a phase 3 VX950 trial. And from what I've been hearing, just because an earlier VX950 trial was run at a certain hospital, that doesn't necessarily ensure they'll be conducting a later phase trial too. Vertex has apparently decided to spread the love around, although I think it's mostly to unload study centers that had a low adherance rate in previous trials (i.e. the ones they had the most trouble with).

Anyway, hope this helps some, best of luck. And I've been to Naples before...you gotta have some serious bread to have a crib there. Must be niceee! ;-)

[mremeet]

Of course you can treat with the new drugs, that is when they're available. I guess what you mean is that you were turned down for an experiemental drug trial because you were not treatment naive? In many drug trials, especially earlier phase trials, people who have treated and failed previously are excluded. But in the case of the VX950 Prove 3 trial they are including people who have failed treatment before (many of which are here on this forum). They will probably include people who have failed treatment in the final phase 3 trial too (although I'm not certain of that offhand), which should start within a year. And of course after the drug is FDA approved and is available commercially, you'll be able to get to it. And obviously being that Alinia is already FDA approved and available, you'd just have to find a doctor who would be willing to prescribe it to you during your SOC treatment if you wanted to go that way. Hope this helps a little, good luck.

[HappyDeb]

I am interested to know how do you go about signing up for this trial tx. with telaprevir ? I to was a slow responder geno 1a , minimal liver damage on biopsy . I stopped tx. after 12 weeks, about 3 weeks ago. I went from 8 mil.  to 4.3 mil. dr. said sorry. I also got a really bad rash, so they really wanted me off. I am so frustrated also , because I want to rid of this virus and go on with my life. I am sure there are so many out there just like me, I feel your pain. Anyway, please if you have any info on this ,I would be so graetful. I live on the west coast of Florida, Naples.


                                                   Thanks again,
                                                   Debbie :)

[charm27]

if treated with SOC and tx fails..can we treat again with new drugs that are coming. I was told no.
This makes no sense to me at all. Ive asked this question many times so please forgive me for asking again. It is eating away at me.

Thank you.
very upset by it.

[mremeet]

If I were in your shoes, there's no doubt I'd hold off until one of the better drugs are available. One of those drugs is called "telaprevir" or VX-950. It basically cuts geno 1 treatment time in half (down to 24 weeks) and almost doubles SVR rates simultaneously (when dosed with IFN + riba). I have similar stats as you do (other than being male), or did. I took this drug with IFN+riba last year in a drug trial and now I'm cured. So are several others here, the stuff works. It does have a pretty sizeable of side effect in the form of rash, but only about 30% of patients will get that. Diarreah can also be a problem with it, but most get through it, and as long as ribavirin is included with the IFN, the odds are definitely in your favor you'll be cured. There is also another drug called "Alinia" which was originally developed to treat parasites. It's already available and is already FDA approved. Alinia has fairly recently been tested in hepatitis C patients (geno 4), and has been found to be very effective at reducing viral loads in those who took it with IFN+ribavirin. Plus it has a very low toxicity and side effect profile (unlike IFN and especially riba). Alinia is still being researched, but so far it looks like it may be a very helpful adjunct to existing treatment. There are patients being treated with it right now, and rsearch continues.

Anyway, you have very minimal liver fibrosis, you can easily afford to wait out these developments. They're not far away, and there are many others in the running too. Just because you can treat right now, doesn't mean you should. It sounds like you feel a sense of strong reluctance to go into another possibly failed treatment right now. In my opinion, that's wise to feel reluctant. Listen to you gut and hold off just another few years - you won't regret it.

PS>> VX950 will be running phase 3 (the final phase) trials soon. You might be able to get signed up for it and be treating with telaprevir in less than a year.

[charm27]

I was told Pegasys and Peg-Intron are the same. I would imagine the "key to your outcome" would possibly be the dosing aspect.

good luck

Hopefully we all have new drugs on the horizon in a few years.

[PSP-n-Me]

if I relapse I think I will wait for the new drugs, my bx showed same as yours with stage 1 grade 1 - so why go through another 48 weeks when you can wait and only do half the time...just my opinion though, I am still on tx, do my 38th shot tonight out of 48...I am very nervous about the outcome - in the bacl of my mind I can hear this little voice that tells me it will come back, maybe I am just paranoid lol

good luck with whatever you do - Beth