Aa
Down
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.
Being med short at EOT doesn't concern me near as much as not hitting RVR by week 4. My plan is to bombard this early even if I end up bedridden and/or in the hospital for transfusions. If I hit 4wk RVR, then I will stumble on to the 12 wk mark. If for some reason I have to taper down, or God forbid, have to stop early, I will still have some hope of SVR. I am going to treat in stages with stage 1 being the most important in my mind.
No no, I dumped my first doc who is an infectious disease M.D. And luckily got in to Cleveland Clinc and talked to a Hepotologist. He knew right off I had steatosis. He agrees to up the Riba and extend to 48 wks. Which is an improvement. But, like I have been saying, the clock is ticking for me.
If it's you decision to double dose, sanctioned by the docs or not, the concept of delaying tx while you stockpile the meds is an idea. One thing that you'll need to deal with, at some point, is the fact that increased use will leave you med short at some point and sooner or later you'll need to have a way to make up the shortage withou tx interruption. As for you wife's objections, she needs to see the light that unusual circumstances call for unusual approaches. Good luck.
"I was very careful to preface my remarks with "Assuming your doctor thinks you can wait"..."
Considering at least one of his doctors had gauf on non-weight based riba not once, but TWICE (especially considering his high BMI), and has poo pooed Alinia right off the bat, I wouldn't put my faith in (nor defer to) his judgment for anything. And certainly not when it comes to a life and death decision like this. Would you put your faith in a doctor like that, especially if you had cirrhosis+steatosis? I'd suspect not, in fact I think you'd drop him in a New York second. Furthermore, exactly when is it ever a good time to wait for better drugs that are least a year and a half away when you have cirrhosis with fatty liver? Especially if you have the relatively treatable geno 3?? Especially when you've already demonstrated successful treatment previously with low riba and a mere 24 weeks (albeit not SVR-ing)? Especially when a possibly powerful drug with minimal sides is available right now? And like gauf said, his doctor has already acknowledged he needs to treat very soon and has specifically advised him against waiting for Telaprevir by declaring it "5 years out". And no, I really don't think the Telaprevir phase 3 trial will be including gen 3's. All of the Prove testing to date has been for gen 1 treatment validation and I don't see phase 3 (Prove 4) testing being any different (although they may commence other genotype testing concurrently with Phase 3). But again, even in the event gen 3's were included, there will almost certainly be restrictions (and perhaps even further blinding) that may make that a less than attractive option considering what's available to him right now with Alinia+SOC+increasaed dosages+48wks or more etc.
If I were in gauf's shoes, there's no question I'd move on my virus with a creative use of existing drugs NOW (after getting weight under control), not later - and even gauf's doctor seems to agree with that (who hopefully is not the same doctor who put gauf on 800mg and then 1000mg of riba (with a high BMI) for two failed attempts). Anyway, I just think it's a no brainer at this point. As always, YMMV.
Considering at least one of his doctors had gauf on non-weight based riba not once, but TWICE (especially considering his high BMI), and has poo pooed Alinia right off the bat, I wouldn't put my faith in (nor defer to) his judgment for anything. And certainly not when it comes to a life and death decision like this. Would you put your faith in a doctor like that, especially if you had cirrhosis+steatosis? I'd suspect not, in fact I think you'd drop him in a New York second. Furthermore, exactly when is it ever a good time to wait for better drugs that are least a year and a half away when you have cirrhosis with fatty liver? Especially if you have the relatively treatable geno 3?? Especially when you've already demonstrated successful treatment previously with low riba and a mere 24 weeks (albeit not SVR-ing)? Especially when a possibly powerful drug with minimal sides is available right now? And like gauf said, his doctor has already acknowledged he needs to treat very soon and has specifically advised him against waiting for Telaprevir by declaring it "5 years out". And no, I really don't think the Telaprevir phase 3 trial will be including gen 3's. All of the Prove testing to date has been for gen 1 treatment validation and I don't see phase 3 (Prove 4) testing being any different (although they may commence other genotype testing concurrently with Phase 3). But again, even in the event gen 3's were included, there will almost certainly be restrictions (and perhaps even further blinding) that may make that a less than attractive option considering what's available to him right now with Alinia+SOC+increasaed dosages+48wks or more etc.
If I were in gauf's shoes, there's no question I'd move on my virus with a creative use of existing drugs NOW (after getting weight under control), not later - and even gauf's doctor seems to agree with that (who hopefully is not the same doctor who put gauf on 800mg and then 1000mg of riba (with a high BMI) for two failed attempts). Anyway, I just think it's a no brainer at this point. As always, YMMV.
Fair enough. But if Alinia is becoming a significant part of your decision, please do yourself a favor and get a second opinion on it from a good liver specialist. Not saying there's any downside, but it's giving Alinia an unrealistic upside that I'm concerned about. From what I've read, no SVR data. If it were me, I'd gather whatever studies were avaliable on Alinia, study them, and then trot them over to a hepatologist for discussion. This is how I approached my treatment. I do respect the opinion of HR and others here on Alinia, but for whatever reason I don't share their excitement given available evidence, although I do share their hope that it (or something else) will knock down this horrible disease.
-- Jim
-- Jim
Thanks Jim, I completely respect your knowledge and opinions and always appreciate your posts. I know you are aware of how unrealistic it is for a 3A relapser to get into a trial at this stage of studies. The hope I hold for alinia is much more realistic due to it being "on the shelf". I think of those behind me who cannot wait for new drugs for various reasons, I want to help myself and them. As always, thank you for your help.
-Geoff
-Geoff
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
http://www.google.com/search?hl=en&q=alinia+researcher+site%3Amedhelp.org&btnG=Search
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.
-- 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.
A "satellite adjunct doc" is something I know nothing about, but desperate for help so will pursue. We are of like mind; Thanks much.
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.
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.
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
Susie
www.hepcassoc.org
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
gee, green and yellow, with some black around his neck? kinda not sure... fraid I wouldn't make a good Columbo...
Susan: youre going to be okay....youre going to outlive your parents, know that in my bones...I put a lot in women's intuition by the way...
Susan: youre going to be okay....youre going to outlive your parents, know that in my bones...I put a lot in women's intuition by the way...
Assuming your doctor thinks you can wait -- and considering you're relapsed twice with SOC -- I'd bypass all the SOC variations and try and get into a phase III Telaprevir trial next year.
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.
As to Alinia, I hope it will be an important force just like anyone else, but it's still to early to make any calls. That's not that adding it to the mix isn't a reasonable idea, but to rely on it *in place* of other therapies (such as Telaprevir) might not be a very good idea.
I don't know the exact condition of your liver, but cirrhosis is a very wide platform and hopefully you will have all the time you need for the right train to come in.
All the best,
-- 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.
As to Alinia, I hope it will be an important force just like anyone else, but it's still to early to make any calls. That's not that adding it to the mix isn't a reasonable idea, but to rely on it *in place* of other therapies (such as Telaprevir) might not be a very good idea.
I don't know the exact condition of your liver, but cirrhosis is a very wide platform and hopefully you will have all the time you need for the right train to come in.
All the best,
-- Jim
I made my Living Will, Advanced Directive, Surrogate Health Care Person and Durable Power of Attorney!! I wanted to have it all in place, not because of just the Hep C, but mostly because of my son. He's not in any kind ability to make decisions of that sort, yuh know? My parents are getting older and I figured that if I had my decisions already spelled out on paper, that it would make it easier for anybody-if the worst happened--I mean other things could happen-accidents-heart attack, etc., etc. For me, it's not about me having a lot of wordly goods to pass along-I don't-it's more about if I ended up like Terri Schiable or Karen Ann Quinlan, or something like that. I just wouldn't want to be kept alive on machines-my choice and I wanted that spelled out.
Susan
Susan
never told you this story...there is a really nice plant store not far from here, Mickey Hargitay's Plant Store (he used to married to Jane Mansfield, for anyone that even cares, ha ha!) Anyway, he's past now and his son runs it now, and loves Parrots as much as Mikey did.
He has a giant parrot that used to belong to Mikey (you would know more then I what kind it is) that greeted everybody in the plant store, and had the run of the place, it is such a beautiful bird, and relatively old and kind.
Well, this idiot stole the parrot, and the whole neighborhood was really upset, and these animal rescue women I know got on the case. They got a tip that a neighbor had a parrot in their back yard that matched the description....well, they went over there with a telescope and did a recon mission looking through the trees.....sure enough, it was this guy who got it for his family, only a mile away...(these creeps don't know we have posses for this type of thing)
I went with the posse and this really balsey woman that I call Dog Woman, an Australian writer by profession, went up to his door and demanded that he give the parrot back, or we'd have every cop in the city there in 10 minutes. He gave it back. Now Mickey is back in the store, and stays next to the cash register where he can be more closely watched, he chose to do this on his own btw. Be well kiddo.
He has a giant parrot that used to belong to Mikey (you would know more then I what kind it is) that greeted everybody in the plant store, and had the run of the place, it is such a beautiful bird, and relatively old and kind.
Well, this idiot stole the parrot, and the whole neighborhood was really upset, and these animal rescue women I know got on the case. They got a tip that a neighbor had a parrot in their back yard that matched the description....well, they went over there with a telescope and did a recon mission looking through the trees.....sure enough, it was this guy who got it for his family, only a mile away...(these creeps don't know we have posses for this type of thing)
I went with the posse and this really balsey woman that I call Dog Woman, an Australian writer by profession, went up to his door and demanded that he give the parrot back, or we'd have every cop in the city there in 10 minutes. He gave it back. Now Mickey is back in the store, and stays next to the cash register where he can be more closely watched, he chose to do this on his own btw. Be well kiddo.
Venus and the flock want Halloween costumes.
I don't need one this year. Just gonna paint the lumpie thingie dangling off the tip of my nose green.
Wow you can quote Buffalo Bill. I'm impressed, precious. :)
wyn
I don't need one this year. Just gonna paint the lumpie thingie dangling off the tip of my nose green.
Wow you can quote Buffalo Bill. I'm impressed, precious. :)
wyn
HA HA HA HA! swear, sometimes when I try to sew I think of that guy, Buffalo Bill...."It rubs the lotion on its skin or else it gets the hose again!!!!" "Yes, it will, Precious, won't it? It will get the hose!" HA HA HA! That voice, ewwwwww! And when he puts those pasties on and poses in front of the mirror!, ewwwwww! Other people focus on the obvious characters in that film, you and I focus on Buffalo Bill, he he he he....
yeah, pulled my covers again, I always wanted to sew, ever since I got a "D" in Home Ec cause I could barely make a gym bag...it's kind of a joke...I went out and bought a nice White Sewing Machine, and a Serger, never used that one at all...I always admire people who can do something with their hands (shut up Goof), get this, I even want to learn carpentry! maybe someday! Quit laughing, I see you!!!!!
yeah, pulled my covers again, I always wanted to sew, ever since I got a "D" in Home Ec cause I could barely make a gym bag...it's kind of a joke...I went out and bought a nice White Sewing Machine, and a Serger, never used that one at all...I always admire people who can do something with their hands (shut up Goof), get this, I even want to learn carpentry! maybe someday! Quit laughing, I see you!!!!!
YOU!!!!!! With seamstress aspirations!!!!!
Somehow, 4c, though we're forum pals, I just can't envision you as a tailor! *lol*
And what's even funnier is the thought of you crying about letting go of your sewing aspirations. But then, that character from Silence of the Lambs flashes through my mind! hahahahaha.
Well, I'm glad I filled out some of that paperwork, even though I currently don't know where it is, just for the flock's sake.
BTW - YOU a DRAMA queen????? I never would have guessed. :))))
wyn
Somehow, 4c, though we're forum pals, I just can't envision you as a tailor! *lol*
And what's even funnier is the thought of you crying about letting go of your sewing aspirations. But then, that character from Silence of the Lambs flashes through my mind! hahahahaha.
Well, I'm glad I filled out some of that paperwork, even though I currently don't know where it is, just for the flock's sake.
BTW - YOU a DRAMA queen????? I never would have guessed. :))))
wyn
not to make light of this, but maybe lightness is needed sometimes...I wish I would of videotaped my writing of my living will after my diagnosis....my housekeeper was helping me divide my things, weeping, I gave her my sewing machines and sewing books (never learned to sew worth a darn anyway)....then.....still weeping, I divided my other things, and told various family, friends, neighbors, what they would be getting, just in case the attorney didn't take care of his business properly...this was years ago now, and some of my neighbors and friends still bring it up, and we have a good laugh over it....I would of been the hammiest actress, I can be SUCH a drama queen!!!! I wonder how many of us made wills? (which is a good thing to do anyway, for everybody, I realize)...vast majority of us are still here, thank God...
Jeeeezzzzz, gauf.
I've been wanting to post something to you but couldn't think of what to say.
I can only imagine how I'd feel if I were in your position
I know what you mean about wondering how long you can last. But just putting those words in an email and sharing it with us will hopefully give you the motivation to continue fighting. When i found out I had hep c and had to start TX the first thing I did was download all sorts of final docs, including a living will, last will, power of attorney . . . boy, did I ever let my imagination go overboard! Now I couldn't tell you where those docs are. (of course, i do have the excuse I moved a couple of months ago.
My point is, even though I'm not nearly as bad off as a lot of folk on forum, I still had to go through all this letting go, grieving for my health, my physical self, and coming terms about mortality. It was painful as h*ll but it sure helped me try to put things in perspective.
Best of luck, Gauf, and keep us posted. My thoughts are with you.
I am just so sorry to hear your sad news, but don't give up! not yet! I have a sneaking suspicion it just ain't your time. :)
Wyntre
I've been wanting to post something to you but couldn't think of what to say.
I can only imagine how I'd feel if I were in your position
I know what you mean about wondering how long you can last. But just putting those words in an email and sharing it with us will hopefully give you the motivation to continue fighting. When i found out I had hep c and had to start TX the first thing I did was download all sorts of final docs, including a living will, last will, power of attorney . . . boy, did I ever let my imagination go overboard! Now I couldn't tell you where those docs are. (of course, i do have the excuse I moved a couple of months ago.
My point is, even though I'm not nearly as bad off as a lot of folk on forum, I still had to go through all this letting go, grieving for my health, my physical self, and coming terms about mortality. It was painful as h*ll but it sure helped me try to put things in perspective.
Best of luck, Gauf, and keep us posted. My thoughts are with you.
I am just so sorry to hear your sad news, but don't give up! not yet! I have a sneaking suspicion it just ain't your time. :)
Wyntre
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