Down

[gauf]

Feeling kind of down. I am a 2x relapser with cirrhosis. Now, I find out I have steatosis. Losing weight is damn hard. When I think of what is coming (again), and the fact that I can't get a hold of alinia, or get my doc to ok double dosing, I wonder if it's worth it. I mean i don't feel my odds are very good for SVR. I have lately been thinking that maybe it's just the way it is, why NOT me?  Thinking about dying and trying to come to terms with it. Not angry anymore....just starting to accept that maybe I am just supposed to go. Thinking about how long I can last. Spirituality too.  I know some of you must have felt this way... I am not a quiter, but, well some of us just can't win no matter what it seems. Not even looking for advice really, I just can't say what i am feeling to my family as they will not understand.

[mremeet]

Forgot to also include this google link with some of HR's comments concerning Alinia. It's pretty tasty, especially considering how much "anticipatory enthusiam" he seems to have for it.

http://www.google.com/search?hl=en&q=alinia+researcher+site%3Amedhelp.org&btnG=Search

[jmjm530]

I was very careful to preface my remarks with "Assuming your doctor thinks you can wait" and this really is something for a good liver specialist to access and something for which we here are somewhat limited. As to the Telaprevir Phase III trials, rather than speculate, personally I'd be on the phone trying (if in Gauf's shoes) to find out exactly who will be included and who will not (geno 3's, re-treaters, etc). Again, I'm not saying Gauf shouldn't re-treat right away with some variation of SOC, just saying he should look into other alternatives -- specifically Telaprevir -- if available. And if not, then find the best hepatolgist avaiable and devise a tx strategy based on available drugs. I think we both agree (at least I do :) ), that given hypothetical free access to a shelf of all tx drugs in existance -- that Telaprevir would be one of the drugs for Gauf to grab. Just want him to explore that option a little more before moving on to something else.

-- Jim



If you can't wait, then find a liver specialist who take the time to analyze why your treatment failed in the past and come up with a reasonable plan moving forward.

[gauf]

A "satellite adjunct doc" is something I know nothing about, but desperate for help so will pursue. We are of like mind; Thanks much.

[mremeet]

Jim - The Telaprevir phase 3 trial will not be recruiting geno 3's to my knowledge, and I don't know if they'll even be recruiting relapsers/non-responders either. And even if they were, Telaprevir has not been tested in humans for geno 3, so it's not known yet whether it will work with them (although it probably will, just like Alinia probably will). Plus, looks like gauf has a propensity for anemia, even when on sub-weight based riba levels. Telaprevir has been shown to exacerbate anemia somewhat (although not as bad as riba), and I'd guess that phase 3 will be excluding rescue drugs as per usual. And like gauf has explained, he not only has cirrhosis, but fatty liver on top of that. Not a good scenario for "wait and seeisms" at all in my view, especially considering he has relatively 'easy' to treat geno 3 (and did successfully clear his second time around with only 24 weeks of treatment - even on only 1000mg riba (which again is sub weight based)). And should he slip into ESLD and should he receive and survive a transplant, he'll still be infected with HCV. Except this time he'll have to take anti-rejection meds which to my knowledge are similar to prednisone (i.e. they're immunosuppressive). And since IFN/riba based treatment is based on immunostimulation, this may set him up for autoimmune hepatitis during and after treatment. This could mean either his virus runs wild because of ongoing immunosuppressive therapy (again to prevent transplant rejection), or that he attempts treatment and risks failed treatment and/or autoimmune hepatitis during or after his treatment has concluded. Therefore, if he has any chance at all of shedding his virus now before he gets to that point, he'd be well advised in doing do - and doing so aggressively with whatever is available at this time (which obviously includes Alinia and an extended tour of treatment).

gauf - If you're really getting serious about taking the Alinia, if I were you I'd track down hepatitis researcher. I don't want to speak for him in any manner, but I suspect he could give you some good info about Alinia and how you might fit it into your treatment regimen. You might even be able to hire him as a satellite adjunct doc to assist with your treatment, perhaps even in a consortium agreement with your existing doc. Their collaboration might work wonders for you, plus if your doctor is really a good hepatologist I can't imagine he wouldn't be interested in seeing what your antiviral performance, side effects and bloodwork would look like while taking Alinia. Best of luck, let us know how it works out.

[Susie2007]

I'm a non-responder and I've tried all the treatments in varying combinations. I have had HCV since 1966 and when I was diagnosed in 1992 I already had cirrhosis. Here it is 2007 and I am still well compensated and living my life. Hang in there. Having cirrhosis, while not great, is not a death sentence.

Susie
www.hepcassoc.org

[gauf]

Adding Alinia to the mix seems like a good idea. It's true that the SVR rates are not in, but preliminary studies look more than promising to me. I got a good feeling about it, maybe it will not amount to much, but the placebo effect might help me. It seems safe enough so what the heck. I would only consider it as an add on to soc.  Not so easy to get a script for this stuff though, as I am finding out. My liver damage is progressing and doc says I need to treat soon. He put's telaprevir at 5 years out due to newer FDA protocals. He does have me in a study on lowering steatosis prior to tox. (Not with drugs, but diet and excercise). Maybe the scientist in him doesn't want his study tainted by adding alinia or double dosing, he didn't say anything to indicate that attitude, but I wonder at his motivation to nix it. I appreciate your comments. -Geof