Non-Responder

[tahoeunicorn]

Well, I am a non-responder. My doc said there is an anti-Viral med suppose to come out in Dec. 08. I'm gonna try to do some research on it. Doc said that there is no need to punish myself and it would be best to wait until new meds come out. They are suppose to be sending me soon for ultrasound, Fiberscan is not available here yet. I did ask about it though. So I'm off TX for a bit, hopefully that is all, just a little bit. If anyone has a site on this anti-viral coming out PLZ post a link. On the bright side, my mind is starting to come back just in time to do some Taxes an make extra money. I asked about weight-based Riba and my doc only uses it to treat 1's and 4's. uses Copegasys to treat 2's and 3's as SOC. With all I have going on it might be best for the moment. Don't get me wrong, I'm NOT giving up, just stepping back and looking at all the options. I was showing signs of Rhemutoid Arthritis which was HCV induced, that may have made me a non-responder. Who knows!!  I appreciate any info I can find on this new Anti-Viral med, I just want to see the studies being done and results. Doc said had good response from non-responders and relapsers.. Well we will see what happens.

Thanks

The Nutty Unicorn
Lynn  

[dointime]

Oops, you are genotype 3.  Telaprevir Prove3 trial is for genotype 1 only.  

So something is just not right with your story - not meaning you but perhaps you picked the doc up wrong?  Otherwise you may need to get another doc.  Or I'm going nuts which is always a possibility.

dointime  

[dointime]

From what you say, I think that your doctor can only have meant telaprevir (VX950).  This tx is the only Triple Therapy which is currently running a trial for non-rsponders and relapsers.  The trial is called Prove3.  The results are not yet in but here on the forum we have heard of successes in this trial.  To find out more about it you can search google for 'Vertex' and 'Prove3'.  The website is www.vrtx.com.  

Vertex may apply for approval for this around the end of 2008.  I think it is the only possibility that your doc could have meant but maybe there is a misunderstanding somewhere about how soon you would be able to get the drug.  I don't think it will be all that soon quite honestly.

dointime.    

[Trish77]

Tahoe,

Just for your information more than anything....drugs in current development:

http://www.fool.com/investing/high-growth/2007/10/31/the-next-hepatitis-c-blockbuster.aspx

http://www.hepctrust.org.uk/news/2007/November/AASLD+2007+-+Drugs+in+Development.htm  

I am wondering same thing that dointime asked you about....despite what your doctor thinks about weight-based Riba...what dosage did you get, if you don't mind me asking?

I wish you peace while you sort out your next move, Tahoe.

Trish

[nygirl7]

So sorry Tahoe - it may have been a big disservice of us to try so hard to be overly optimistic when this was what it looked like it would turn out all along but dang as long as there was some chance it was worth it.  I wish to God it had worked for you but like you said at least you're getting some brain function back........72 weeks of INF have left me pretty stupid!  :)

[sfbaygirl]

Can you get some Alinia?  I know Kalio is a 3 also and added Oxymatrine to her soc. I also think she added a bit more interferon like half doses during the week.  Just some suggestions.  

Linda

[tahoeunicorn]

I am GT 3a, almost 13 wks of Riba and pegasys. Did not drop 2 log by wk 12. At week 4 did go down almost a log, but by week 12 basically no change. The TX that Doc is talking about (trying to get the name) is Triple Hit. It is another Anti-Viral med added to the Riba and Pegasys. stage 4 grade 3 cirrhosis, still low ast/alt levels but greater than 2:1 ratio

Sfbaygirl--I aint givin up. Don't worry about that. Just taking a step back so I can think and research. Doc did say if I found anything else to call him. He knows that I have been doing a lot of research on TX for HCV.

Thanks

Lynn

[sfbaygirl]

I think she is a 2 or 3.  The whole thing sounds bizarre to me!

Linda

[dointime]

Sorry but there are no new antivirals with any possibility of coming out in Dec 08, with the outside exception of telaprevir, approved for non-responders only - and I seriously doubt that it would get on to the shelves that soon.  

You really need to ask your doc what he is talking about.  

Have a look here
www.hcvadvocate.org
in the section on drugs in the pipeline, for information on current drug development.

"I asked about weight-based Riba and my doc only uses it to treat 1's and 4's. uses Copegasys to treat 2's and 3's as SOC."

I don't understand the above sentence.  What genotype are you?  Did you get weight-based riba?  What tx did you do and for how long?  

dointime
    

[tahoeunicorn]

Thanks to All of you for your support. I will keep looking for something to fight this demon with. I am E-mailing Doc's PA to try to get the name..

Bill-- Yeah I took that in May 06

Lynn

[Bill1954]

I have to imagine her doctor is looking at a larger picture that includes psycho-social factors such as the recent death of a family member, and any other reasons that might contribute to the overall holistic health of the patient in his/her decision, what do you think? We aren’t privy to all the info that might be available to a patients doctor, obviously :o).

The article I referred to above is a link to the recent HALT-C results, and addresses the efficacy of maintenance therapy, and not viral response issues.

Take care,

Bill

[sfbaygirl]

Let's remember that she was only on tx for 12 weeks, does this qualify for non responder status? At least at most go 24 weeks before making this assessment.

Bill;  I know that was brought up at the conference and seems to be a new thing, but as I said, after 12 weeks????

[Bill1954]

Unfortunately, a shadow has been thrown over the concept of “maintenance therapy”
by the results of the HALT-C study released in the AASLD’s  November ’07 Boston meeting. An excerpt from the study:

Conclusion
“Long-term therapy with peginterferon did not reduce the rate of disease progression,” the investigator concluded. “These findings do not support maintenance therapy with peginterferon in patients with chronic hepatitis C and advanced hepatic fibrosis who are non-responders to a course of peginterferon/ribavirin therapy.”

Here is a link to the editorial as written by Liz Highleyman with hivandhepatitis.com:

http://www.hivandhepatitis.com/2007icr/aasld/docs/111607_a.html

This study is preliminary and has not been submitted for peer review or publication, but the results appear rather dismal at this time.

Good site by the way; fill out the request, and they will e-mail updates twice a week to your inbox.

Take care,

Bill

[pKinCA]

PS  Just found this in my bookmarks :-)  

It's an article about a new drug called Locteron that seems promising...  Probably not the same drug mentioned by your doctor, but it still might be worth knowing about...

http://www.genengnews.com/news/bnitem.aspx?name=20796595

More sleuthing later...

[pKinCA]

I am relatively new to the world of HCV, but I have done a ton of sleuthing online about it and treatments, etc.  Anyway, one thing that crossed my mind while reading your post is that I seem to recall reading in a few articles that even if SVR is not reached in people with cirrhosis that the treatment can still be therapeutic and beneficial to the liver.  I think there was mention that some scarring would be lessened?  I just did a quick search of my bookmarks and I didn't see anything, but if you'd like I can do some sleuthing for you later on this afternoon (I'll be gone most of the day today)... Just let me know...

Bye for now,  

"The self-proclaimed Queen of the Internet Search"  :-)

[Trish77]

I'm sorry you went through that and didn't respond.  I'm glad you found a bit of a silver lining in that you're able to do some taxes.  It does seem prudent to give yourself a bit of a rest.  You can take some time to see what else is out there at the moment, read up a bit on different approaches to treatment and perhaps even get a second opinion on what is good for you.  I have to think that next time around, perhaps with some modification, a different approach and maybe even different drugs...you'll beat this thing.    

Take good care of yourself in the meantime.  You've earned it.  

Trish

[charm27]

Im very sorry to hear your a non responder. Certainly with HCV their are no guarantees with anything we all know that. I wish you all the best and hope something will change for you very soon.  Keep trying dont give up.

We are all plugging for you.
Prayers.

[sfbaygirl]

Hey, what about the new Dr? I still am not convinced about your NOT responding.  Check out my thread about Fibroscan...I posted the diet re; anti fibrotics. Curmaden is the hot one and Gauf gets his at Smartbomb.com. There is a big difference in where you get them.

What happened to the Dr at the hospital?  Grrrrr.  I don't like it!  Sorry I am ranting...just don't like it!

Linda

[zazza]

So sorry you turned out to be a non-responder. Considering that, I believe you are doing the right thing stopping tx now.

Hoping the future holds an SVR for you!

[Bill1954]

Well, I’m sorry to hear the news; but realistically, even if you did eventually respond, your statistical chances of achieving SVR were very limited. This is probably the best course of action to take though, all things considered.

You didn’t mention the name of the anti-viral your doctor was talking about; there are a number of new meds on the horizon. You might try the following site for info on clinical trials:

http://clinicaltrials.gov/

In the mean time, did he offer any thoughts on diet or supplements that might help with anti-inflammatory activity? I questioned my doctor last month about this, and his response was that the concept of antioxidants was too simplistic in nature, and of course, that there was very little research supported info on this subject.

Meanwhile, if you recall the name of the meds your doctor mentioned, go ahead and post—someone here will likely have some info for you.

One of the problems with GT-3 is that they tend to *statistically* respond fairly well to treatment; there hasn’t been nearly the research for GT-2 and 3 non-response and relapse crowd that there has been for GT-1.

Good luck, take a break, and let us know how things proceed, OK?

BTW, nice picture of Vikingsholm castle out in Emerald Bay; did you take the photo?

Take good care,

Bill