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.

[Forseegood]

aaaah, Gauf, sorry youre so down today, this all must be so unnerving to you, I know it is for me, and you've been through so much more then I have, but please.....don't lose hope...about 6 months ago I saw a woman I've know since my diagnosis in 01, that has compensated cirrhosis, and has had it for going on 13 years, with hep...she gets problems now and then, but she's really doing okay, taking care of her child, etc....a person can go a long time with cirrhosis, for some reason, I know many that have, a lot here on this board...don't lose hope, easy for me to say I know, but please just give yourself the time to get out of this down spiral, it'll pass...I'll email you about this alinia info I have, take care Gauf...tomorrow is another day huh? thought I'd throw you an old nugget..they work sometimes! lol....be well....

even if the worst happened, and you needed transplant (and I'm in no way predicting that's going to happen, just a hypothetical, look at all the people who are doing fine on those too~)

[goldyn]

You have tried to hard to just slip quietly in the night..your time of healing will come all the new drugs plus if it comes down to it a transplant and that wont probably be for a long while your just a little blue now but you do have the fight in you..you will not slip quietly in the night.. you will beat this ugly virus.........
                                      Blessings to you and your family
                                                       Goldyn

[charm27]

Sorry you are down....its not easy which we all know. I totally agree with what Foreseegood said and Goldyn..its true.

Besides...I think a depression cycle is defintely going around and smacking us in the head.
You will beat this somehow someway and hopefully very soon.

The Best To You

[sfwandwow]

my hubby told me he saw on news that they have found a cure for cirrhoses( cant spell).  he didnt get to catch it all but i thought wow this is great for all people..GOD is using man to heal us..  have a great evening

[Forseegood]

I totally agree with you, as much as I can't stand the summers now (with hot flashes it's a bit too much for we ladies of a certain *maturity* lol....) I think the change of weather has something to do with out outlook...I"ve been really doubling up on the positive reading, mediations lately to help change my mindset, or I'd be a screaming mimi...hope youre well!

Gauf: my sister has been going and going for years now on decompensated cirrhosis....sometimes I think all this info we have deal with stats, etc...it doesn't always apply to us individually, a very small percentage of us kick the bucket with this, very small percentage, relatively speaking...

Goldyn: just wanted to say, nice to see you!

[mremeet]

Not sure what your treatment history is (other than you relapsing twice previously), but why don't you think about taking up the fight again? Like you said, tap into Alinia, elevated doses of riba, elevated doses of IFN, procrit, neupogen, 72 week regimen...the works. And prepare yourself by losing weight before going into it, put yourself in peak fighting form (remembering that low BMI optimizes odds of success). Force yourself to develop a strong sense of purpose with a definitive goal in mind. Focus on what it is you want to accomplish (that being SVR), and think long and hard about every single thing within your power to bring that about. Visualize victory, know that it's within your grasp, understand that it IS possible. And that ain't just some BS pep talk, it REALLY is! Don't go quietly, when it comes to this sort of thing you gotta step up - ya just gotta!!

[susan400]

Gauf,

I know how you feel, but please don't give up!   There will be something down the road...

Susan

[gauf]

Thanks for the encouragement, I am soooo grateful for the forum.

[FlGuy]

I wouldn't be so quick to call yourself a relapser.  If I recall correctly, your first tx ended very early and your second had reduced meds. Correct?  There are many docs who believe that a patient who can get to undetected is a patient that can get to svr.  The trick, I think, is finding a doc and a treatment regimen that can get you to the end (whatever number that is) my managing and pre-managing side effects.  Having tried twice the recipe for the successful tx needs to be different and aggressive with a doc who is willing to push the envelope a little while making sure you can finish what you start.  All is not lost and there's no need to throw in the towel.

[Forseegood]

it always amazes me the facts about posters you have at your fingertips? and you just finished your second treatment? gee....I don't have that kind of memory retention on myself. Hope youre well.

[FlGuy]

I'll tell you the trick, but don't share it with anyone.  I am all these people.  In reality, it's only you and me in this forum.  At least I have nice company.  How's the kid.  Did I read she turned 18?

[Forseegood]

you pulled my covers! I'm a solipsist! (Solipsism (Latin: solus, alone + ipse, self) is the philosophical idea that "My mind is the only thing that I know exists". Solipsism is an epistemological or metaphysical position that knowledge of anything outside the mind is unjustified. The external world and other minds cannot be known and might not exist. In the history of philosophy, solipsism has served as a skeptical hypothesis.) whatever! Maybe alien beings are running each one of our realities, from faraway stars.....if that's the case, pay off my Visa you idiots!!! :)

The 18 year old is fine, she just vacuumed, could knock me over with a feather! She wants to take the whole day off of school tomorrow, to primp up so she can take her senior yearbook pictures tomorrow afternoon. I told her time would be better spent in just studying - to be able to graduate. Lord help me, I've turned into my mother. YIKES!!!!!! Were we worse when we were teenagers? or better? God knows. At least we had the Beatles. Good on you Fldude.

[FlGuy]

Descartes:
I doubt, therefore I think, therefore I am
Foresee in the role of Descartes:
I doubt, therefore I think, therefore I am and am the only one who thinks

[katerika]

Came across this quote I'd like to share


Hope has two beautiful daughters - their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.

St. Augustine


Keep up the fight!
Teri

[Forseegood]

Beautiful quote. Maybe we cheered up Gauf...hope so anyway...

Flguy: why I oughta...

[charm27]

Awesome quote. Never heard of than one before.
Thanks for sharing  it.

[gauf]

First, thanks all for comments, it really helps. mrmeet, I agree that I need to get aggressive, which is why I went to a good hepatologist. However, he nixed some of the things I want to do, which is why I am in the dumper so to speak. I am dependant on forces beyond my control. I could change docs again I suppose, but took a lot to get this guy to see me. Anyway, my TX history is on my profile. P.S. Augustine rules.  -Geof

[mremeet]

Dude, this is purely my opinion, but I would have a go at it again and real soon. You're still compensated, the window before transplant or death is still very much open. You have to take advantage of that window and do it real soon. If your doctor won't go along with Alinia, and you want to try it (which I would without a moment's hesitation), then go with another doctor. I know of people with cirrhosis right now that are in a similar situation as you, and they've added Alinia to their SOC regimen in hopes it will help them out of their desperate situation (without actually having hard evidence in hand that it will). And remember that Alinia has a very low side effect and toxicity profile, and it's already available RIGHT NOW. All you need is a doctor who knows about it (or is receptive to learning about it) and is willing to prescribe it to you (in addition to SOC). Go with a doctor who's creative and adaptive and will listen to you. A doctor that will let you take higher than normal dosage if you choose to, who will liberally apply procrit, neupogen or whatever you need to keep your doses up. I don't know who your doctor is, but putting a high BMI guy like you on only 800mg of riba in this day and age of weight based riba is a sign he doesn't know what he's doing (unless you have a special problem with anemia/platelets etc that would dictate that). You're in between a rock and a hard place having cirrhosis, but your problem is probably solvable with the drugs that are available right now. Solvable if you get an aggressive doc that will take chances, be creative and be willing to push the envelope. And lucky for you, you have geno 3 instead of geno 1. I'd be willing to bet that if you lost some weight prior to starting, went 48 weeks on SOC (or more if you're up for it), manage to maintain reasonable weight based riba dose adherence, that alone would probably snuff out your virus. Add into that Alinia and maybe elevating your riba and/or IFN for the first weeks of treatment?? I think your chances would be excellent - be thankful you don't have geno 1, that's a real feather in your cap right there, and yet another reason why I definitely think you can put the kibosh on your virus and finally let your liver recuperate back to a stage 3 or perhaps even further given enough time. Stay away from transplant, stay away from ESLD and death - go in the opposite direction! Best of luck whichever path you take.

[gauf]

Yah, I am of the same mind as you on this.  It makes me crazy that these docs won't ok what I want to do! Hell, it's my life ya know? Dr Zein of Cleveland Clinic is highly respected and I am grateful he diagnosed the fatty liver, but he will not prescribe alinia. rrrrrr..... so frustrating.  I can get around the double dosing issue by holding up the start date, but if my wife finds out I'm toast!  She blindly follows the doctors and believes she is looking out for me. Anyway, I have some time left before tx as I have got to lose the weight, (down 10 lbs thus far) so I will keep trying to find a sympathetic doc to help me out.  Glad you're here dude, thanks.

[meki]

I'm coming in here and I'm kicking your butt!!!!

here - have a cup of joe --- or tea...

Now - what's this stuff I'm hearing? You think you can't do what?

Hey now... That's not the way to be thinking...

And each day of life is very precious... I mean --- look outside --- look out your window... What are you seeing? Anything from dirt to grass - to bricks --- to a garden - to a midnight blue sky --- to clouds and rain - snow or old cracked tar...

All of it --- it's amazing... Take a real look at it - not the dreary I've seen it all before --- but a HEY --- check this out kind of look.

And realize that that is how others see YOU.

Now --- if you really want to shake up your life... Put on a thong. That will totally mess you up. Especially if you have hemmorrhoids. I'm telling you what --- that will give you a whole new perspective on life.

Yeah --- you got it bad.

It stinks that you've not cleared yet.

But look at Eric (Andiamo) and Look at NYGirl.

They haven't given up on LIFE --- on LOVE --- and the amazement of both.

And neither should you.

Now go clean your coffee cup out...

LMAO!

Hugs,

Meki

[gauf]

A thong? With hemmorroids? LMAO!  You came back just in time.

[gauf]

btw, When I said "glad you're here", didn't mean that I'm glad you got the dragon!

[wyntre9]

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

[Forseegood]

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...

[wyntre9]

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

[Forseegood]

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!!!!!

[wyntre9]

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

[Forseegood]

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.

[susan400]

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

[wyntre9]

What color?

wyn

[jmjm530]

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

[Forseegood]

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...

[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

[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

[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.

[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.

[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.

[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

[gauf]

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

[jmjm530]

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

[mremeet]

"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.

[FlGuy]

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.

[gauf]

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.

[gauf]

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.