Hepatitis anonymous...

This is weird, but I feel like if I was in a group set up like an AA group, I've be going:  " Hi, I'm Susan400, it's been 2 yrs and 5 mon. since my last treatment...         I know, that's lame sounding.  I just can hardly get over that this much time has passed; since, for many years, I was on the treatment merry-go-round.  I was, for all practical purposes, either on a treatment, or coming off of a treatment with post treatment let down (from not clearing and normal post treatment issues)..., for 10 years!  And then, to have 2 yrs and 5 mon. go by w/o doing this craziness, it makes me wonder, "what was I thinking??"    And yet, I know that if I get the opportunity to do Boceprevir somehow, that I'll probably do it.   I go for my 6 mon. sono on Mon.  Expecting it to be nothing much to talk about. And then, my 6 mon. lab work for my 6 mon. routine check w/liver doc.  If I didn't have to keep on w/these 6 mon. things, I'd probably want to go into a denial mode and just forget all about even having this Hep C thing.  Susan400

[Marcia2202]

Oh Susan! My big wish for 2011 is that you, Trin, Brent, Smaug and I'm sure I'm missing some more, get the big break in 2011.

Whenever I see you guys post, it just breaks my heart that you haven't gotten your well deserved SVRs, yet.

I'm sending you fuzzy hugs from snowy cold Copenhagen.

[willing]

yeah, I know what you're saying.. I managed to stay clean for 7 years and here I am back on another ifn binge with no end in sight.  Itching 'n scratching 'n cussing 'n spewing from both ends like one of those statues in a Renaissance  fountain. What a mess! and all because I thought  this time it's going to be different - this time it's going to work. I think we seriously need to think about a 12 step program for compulsive ifn abusers.

[susan400]

For sure, LOL!

[frijole]

Susan,
I love the concept - HepC anonymous.  That is what we are anyway, isn't it.  Closet heppers.  I too, although I only treated once, can't believe it has been 4 years since my last injection.  Will I get on the BOC or TEL rollercoaster next year?  I always thought so -- made jokes that I would be first in line -- but, as time goes by I wonder.  Should I wait for the next biopsy or jump in?

Willing, -- so you have proceeded with the plan.  Treating with SOC and will add a PI to the mix when available?   The picture of you as a Renassiance fountain is quite enlightening.  Are you spewing Shakespeare as you spout?  

frijole

[Trinity4]

Can't say as I'm looking forward to that old familiar feeling but quite sure I will be one of the first in line.  I'm over the whole HCV thing -  don't want to have to think about it anymore, not even remotely.   Just want to be cured and moving on with my life.  And as an extra special bonus if I achieve SVR you probably won't even see me around here any more.  Rejoice right?  Or maybe some of you are thinking don't wait for SVR Trin, just go now!   hahahahaha

Trinity

[Susan_1a_CC]

To all of you looking to retreat - man, you guys have fortitude!  I wish you all success on your next go round.

[susan400]

Trin,

I totally agree.  I don't want to be around here either.  As you can tell, I haven't been on here as often as in the past.

I've been doing life and trying to just ignore Hep C.  But, the fact that it's looming over me with the ultrasounds and labs and follow-ups kind of reminds me of it.  I am so p*ssed that it's taken so many years from me as far as Q.O.L.  When I'm on TX, I'm not worth anything!  I really don't look forward to going on it ever again to be quite honest and if it can't be made affordable to me, then I might not ever treat again.  I'm not going to go w/o food, or a way to pay for gas for my car, or pay my electric bill, just to do some expensive new treatment.  So, that's all up in the air.  My insurance only covers generic drugs and those type of drugs such as Peg, Riba, are nearly impossible to get them to approve them and whenever it is approved it almost has to be a life-dependent reason, i.e. you will need a transplant w/o them..., now, when you are talking about adding in another non-generic drug like a P.I. well I think that they will blow a gasket!  We are talking about a government run health plan here....   So, much for that idea being the answer for anyone.  I will need to be able to have some kind of a drug-assist program to be able to get these drugs at all.  

Susan400

[evangelin]

I may not be the one with the virus but I sure need a 12 step program for compulsive caregivers.  So many years have rolled by and I have been thinking about this virus, day in and day out.  I want to go on living but I'm so afraid I will miss some little something that could be the answer that we need.  I don't think it is healthy for me at all but I literally don't know how to relax.  If Joe sleeps more than normal or doesn't answer questions quickly, I get all jumpy that things might be getting bad again.  I am very happy for the people that report minimal SX but at the same time, it is discouraging because Joe's are so bad and it seems incredibly unfair.  We are very on the fence on whether or not we should try Teleprevir .  Bocep. is not an option, I wouldn't think, because anemia is a huge problem for Joe.  I don't think I would want to do Teleprevir unless we could also get approved for Alinia again and I know that might be very difficult.  I can't think our budget will allow us to get it on our own because paying for the TX will already be a feat in itself.  I showed Cocksparrow all of Joe's labs and he doesn't think he would try it without Alinia either.  Joe's response was much better with it than it was without.  Maybe I can convince the right people if I lay out his history and show them the Alinia difference but for Joe it means months of diarrhea...how enjoyable. :>(  
HR's supplements have been the only thing that ever worked out for us in this battle.  Everything else has been a big, miserable, and expensive,  disappointment.  Do we just go on living an enjoying the better days that the Hep Tech. supplements are giving us or do we try it a 4th time?  Will the 4th time leave us better or worse?  Joe never had experienced ascites until his last TX .  It has mostly resolved now but will more interferon be the last straw?  
I feel like I am forever stuck pondering Hep C. I might be gone from the forum a few days and someone will post that eating 3 sprigs of parsley, 3 times a day will kill the virus...and I'd miss it. LOL
Ev

[evangelin]

I wasn't depressed at all before I posted above but my post has depressed me.  I hope it doesn't have that effect on anyone else.  Most of us have plenty to be grateful for and things could be so much worse.  When I think grateful and hopeful thoughts, I feel fine.  
Sorry for the gloomy post. It may have been inspired by the gloomy weather.
Ev

[eureka254]

"Hep-C Anon" would cover both Hep C Anonymous and Hep C Al-Anon.  :)
I know exactly what you mean, evangelin -- hep c has one kind of hold on the patient, but it also has an inexorable grip on caregivers.  The hope is that one day we all grow up to be sponsors ;).

[evangelin]

Maybe they will find such great new meds that there won't be any need for sponsers and we can focus on our retirements or something.  I have  scarey visions of myself as a wobbly little Walmart greeter when I'm 89.  I need to try and replace that vision if I can:>)
Ev

[blondie717]

I am hopefull that with the new PI's the unlucky's (Susan) relaspers and non responders will achieve SVR...But I dont think you will all go away. Nor does anyone want to see any of you go away. You have too much vast knowledge, advice, wisdom, crankiness and cocky-ness to go away. I really enjoy some trinitys remarks to people (wounded penis and the likes) some are a bit mean. But they still make me laugh, even if there directed @ meee? Anyways 2011 beating on our door, New PI's might actually be released and available for those  of U that have been waiting for years. Here's to you all!!!! Happy New Year!!!

[willing]

frijole: unfortunately there's nothing poetic about the spouting/raving...Yes, I'm coming up on w10 and  plodding along according to plan. Hoping to be able to add a PI (looks like tela since Merck blew it's '10 filing deadline) by July but results so far have been promising enough that it's not a must-do. I think your approach sounds very wise. In my opinion the  ones who should be lining up for 1st tela are relapsers at F3  or worse. On-label tela guidelines for relapsers  won't be known until after approval but 12+36 looks likely. As an F1 (as I recall) you've got time to see what the current r7128 and bms790052 phase2b results look like. My hunch is you'll be able to shake it without the collateral damage of 48w of ifn.

evangelin: I've been an alinia fan all along and my results so far seem to support this: a 2log by w1 and und-43 by w7. I'll post a graph of the side-by-side comparison of the vl limbo dance on this round versus the last, but it's looking much better. For anyone looking to turbo-charge their ifn response when treating with a PI it seems a promising adjunct.

On the downside, I had to stop it at w8 because of heavy diarrhea/nausea. It was a bit hard to pin down the cause because I had a stomach flu around the same time but it was definitely the ntz. Since stopping it things look *way* better. This is about the same time frame it hit CS. However the two of us seem to be in the minority - many others, including  Bali and eureka254's husband, have reported no trouble over a much longer stretch.

[evangelin]

Your response is sounding really promising.  It sounds much better than Joe's with Alinia.  Joe had Diahrrea right away and lots and lots of nausea issues but he just toughed it out because we knew he had no leeway.  I wish he hadn't done it now since it all was for naught but we do know tha Alinia did somewhat increase his interferon response.  
I hope this will be the last round for you.  I will sure miss your brilliant brain when you move on .  What if all the very smart people SVR?  I will be here all by myself without a clue.
Blessings,
Ev

[evangelin]

That would be "diarrhea"  This is a word I can never remember how to spell. I don't even guess the same way each time. :>)   It would be OK with me if I made it through the rest of my life without ever having a need  to spell that word again.
Ev

[Lady Lauri]

Susan, as one that was there, literally, when you started the last trial...my has time flown!  Sitting in the hallway when u did your first dose....Willy upstairs...doesn't all that seem like a life time ago?!  You stay pretty healthy and have a great attitude despite all the off and on these harsh drugs.

Evan.....you have some 'depression' coming to you two, and all relapsers well deserve some venting, even 'whining' days. During my days here, there is no more depressing post then relapse post.(other than loosing someone)  I just can't imagine for you all. When I felt like whining thru tx, I'd 'look around' here and buck up!

I wish all of you successful tx options this year and would love to see those post of SVR in the future here.


  Best to all, LL

[evangelin]

Hello,
Most of the time we aren't depressed, only a little now and then.  It would be much less depressing to be just a relapser, it is being in the non-responder pool which is depressing because after all these years of waiting, the first round of protease inhibitors still might not do it for them.  Joe's already been through three rounds of interferon and we just aren't up to another TX failure...well I say that but you do what you have to do.  Between cirrhosis and being a non-responder, our choices have always been slim.  I think we've learned to get along in the Hep C cage but sometimes we still long to be free.
Glad you made it to the other side,
Ev

[susan400]

Please don't apologize to us and/or worry about depressing us!  God does know that I've certainly done my share of whining on here.  That's why I've had to step back a bit because I started to get to cantankerous..., spelling?  I don't know.  I have gone so long know without sticking a darn Inf. needle in me that I will probably forget how to do it..., LOL!  That's okay with me, I'd be fine to not to have to ever have to do it again.  I know what you mean about the being a non-responder. Every one of the 9 times (1 time was just maintenance so I wasn't going to try for viral clearance.., that was the '10' in my 10 times of TX), that I had to hear, "we're sorry but we're going to have to stop your treatment because you're a non-responder and we can't let you continue", I was so heartbroken.  It's just like you're getting the wind knocked out of your sails. But, I just kept on picking myself up, brushing the dust off and jumping back up on that old horse, you know?  But, how many time do I want to get back up to do it all over again?  I just really don't know.  I don't have as many critical issues to deal with yet, as your Joe does.  According to my last biopsy, I'm not even a stage 3 yet.  I have noticed a lot more abdominal bloating lately though, w/o any noticable weight gain, so I'm not real sure what's up with that, could be anything.  Quite honestly, if I didn't have my faith in the Lord and a life after this one is over, then, I would not want to keep on keeping on, you know?? I know you know, from your PM's you've written to me.  Susan400

[evangelin]

Thanks for the encouraging words.  The same Person that is keeping you going is the same One keeping us going too.
One way or the other,  we are going to be just fine and eventually, not of it will matter any more.  Our tears will be permanently wiped away. If I didn't believe that with all my heart, this would all be much harder to live through.
Ev

[willing]

as I see it,  you and Eureka should be getting fitted for halos, if you haven't already. Hep-C Al-Anon doesn't begin to describe it.

And yes, after years of posting around here, the spell-checker still  nags me about cirrhosis, diarrhea and phlebotomist  - just let it natter on!

I expect deciding whether to jump on the tela bandwagon will be a big decision for you and Joe - particularly now that the HT supps seem to have provided some qol. It may be a good idea to look at the structure of clinical trials set up after approval - Joe's cirrhosis may an obstacle  but hopefully at least some of those trials will provide access to a two DAA cocktail.

[evangelin]

Thank you. :>)
Oh how I would love to give Joe one of those DAA cocktails!  I pester the trial centers regularly but Joe always has a disqualifying factor. Just this week a trial coordinator called and asked me if Joe had ever taken an experimental drug in a trial.  I told her he took Alinia and that disqualified him.  I didn't even ask her which trial it was because I don't want to know what he CAN'T have.  It would just frustrate.  He was set up for one of the Teleprevir trials and it was looking good until they discovered that he'd been in the Ideal trial and the results were still blinded and we couldn't know what dose of Peg intron he'd had.  If you'd been given the low dose, it wasn't considered viable which would mean you weren't an official non-responder.  The next two treatments were with Infergen and they didn't qualify him as a non-responder because they weren't approved for daily use yet.  It was all just technicalities.  He might have ended up in the no Riba group anyway.  
Well, QOL is nothing to sneeze at and we aren't taking it for granted.  I'll keep trying but
we will enjoy the day we are on too.
Hope TX isn't treating you too bad,
Ev