The Warrior Gods

[cruelworld]

hey everybody, been outta action (no computer access) i caught up a few days ago
and see that some fates have taken big down turns, while others are feeling success.
the bowling balls just keep coming don't they?  Many of us are left standing and
others go down. sometimes it just seems like it will never end. my happy and sad heart goes out to all of you.

at my end, i upped my riba from 5 to 6 a day for five weeks now.  
it was only on the fourth week that i figured out why i was feeling
so bad! i'm not sure i can even blame the riba for that kind of stupidity!  
i'm not sure i will continue but i still can ride my dirtbike so it can't be too bad. I looked up jims recommended study of increased riba(google - lindahlribavirin) and when i found out those guys averaged    2400 mg, or 12 a dayfor the full year, i almost hit the floor!  of course they mentioned that you might have to stay in the hospital with a procrit and blood transfusion IV but what the hell, sounds like fun! i'm kidding, but can you imagine that dosage?. even though the sample was small they were all 1a, high vl, cirrhosis and got an 80 90% svr. and of course procrit and transfusions were
not only allowed but absolutely necessary.

i guess my emotions have been building up lately and i've always wanted to write an anthem for all the multi treaters. i finally did it. it sure helped me a lot to write it. enjoy.  luv ya'll

[purplecat]

Cruelworld
Thanks for you profound anthem. You have helped solve my question.  I am a warrior!

I am in Vertex Prove 1 study. My placebo group was sent out to fight without the new wonder weapon.  Week 12 my PCR had 3 UND and 1 "29" where test was <30.  Week 16 the unexplained 29 again.  Do I extend? If I do I won't  be counted for the Vertex study and would become and incomplete.

I want to be counted, it's not only about me.  I will finish at week 48 and follow my groups protocol and lay down my sword with my fellow warriors(thinking of you lab-rat). If I relapse I will live on the fight again.

Hepper38
Cruelworlds just answered your thread from 5/17 "no respect for life".  Why treat those that are on a self destructive path? A few will become Warriors!
Freud and Menniger wrote about primary death instinct and courageously view life as a brave, though losing fight against it.

I'm a Warrior and in the end hope to join the Gods.  Thanks CW  

[cruelworld]

how many riba were you taking when you went to he ER?
i beleive this strategy really works, but again is the price too high?
i thought i wanted to do it, but now i see i may be too big of a chicken!

[cruelworld]

it sucks that you ended up in the wrong arm. if i end up going to round 2 i will probably use maintenance to get me to FDA release time of drugs. i dont feel like
fighting the dead arm, conundrum. i couldnt follow your vl exactly but hang in there, its not over yet. warriordom here we come! oh im getting right on your suggested reading, ive never read fraud or mininger before so wish me luck.

[zazza]

I have been following your posts on the forum since I also got a "29", a borderline value, at week 12. I find it very heroic of you to stop at week 48 so as to be a part of the Vertex protocol. I wish you all the best and SVR! Please keep us informed!

[ladybug52]

I loved it! How awesome of you to pay tribute to the real fighters in this group. I try to post that sentiment every chance I get, but it's hard to be taken too seriously when you're in the 16 week tx club. You did a great job of expressing it. After txing only 16 weks, it increased my awe and respect for those going 24, 48, 72, and/or those txing more than once.
Bug

[purplecat]

Thanks for your reply.  Not only did I get the dead arm but no rescue drugs for the first 12 weeks when they are so important.  Vertex sent the placebo legion out to fight with one arm tied behind our back.  They lowered my INF to 135MCG for 3 weeks.  


This is why your anthem made me come to the realization that I could not extend past the 48 weeks. I need to be counted and and my number be delivered to Vertex in their quest for fast track approval.to help us all. I signed an aggreement and so be it!

If I do relapse the next battle will be with new approved armour and both arms free.

Karl Menniger wrote "Man agains't himself".  Great book.  I read it way back in the early 70's. Got me to quit all drugs and get off the destructive path.

Thanks again      

[zazza]

You truly are a poet!

[wyntre9]

Good to hear from you.

I'm gonna be on an internet sabbatical soon, too.

About the 72-week death march;  I'm barely crawling now but I keep telling myself it's not forever and the countdown strategy helps me keep it in perspective.  

It's NOT the rest of my life; in my case, it's 50 more weeks.  

That's 350 more days
8400 more hours
504,000 more minutes

Best of luck whatever you decide.  As I recall, you did reach UND around week 20, right?

Wyntre

[cruelworld]

              
                  The Warrior Gods



The grisled warlords of treacherous ramparts.
The invincible yet ephemeral human warriors.
Desperately paying their dues for freedom
yet the cold prison bars won't yield.
A color of disaster is in their every vista.
An inkling of emptyness in their every thought.
Yet the bravery of these gods is nothing less than SUPERNATURAL.
We can only shrink in fear when we imagine their dark universe.
Interminable and destructive hurt saturates their soul.
I cry painfully when I consider their fate
for I, one day may be one of them.

Locked in a stalemated death war,
The vicious black dragon won't yield.
Neither will they.
As they force their way through repeated
bloody battles, a heavy toll is extracted.
Still, they march forward. Blind Bravery. Unimaginable.
It is only they, who can know of how this feels.
Woe to our gods who have slipped into this
black hole.  

A new light is coming for these stoic indefatigables.
New weapons, a new spirit, a new way out.
Now they will get revenge on their enemy,
at last they will overwhelmingly annihilate it.
The win will truly come at an extreme price, but what is ones life worth?
It is through their own oxymoronic invincibility that they
may finally stroll the walk of Freedom.
It is through their strange crusade of stubborness that they, once again
can enjoy sunlight with their name written on it.
We throw Confetti, Flowers and Cheers to these unsung heros
At last, they can roll through the glorious victory lane,
with throngs of screaming supporters and bands blaring.
After all these years of mind numbing sacrifice,
the prison cell can finally open. The nightmare can finally end.

Let these coveted Warrior Gods continue to be
the spearheads of our human battle against suffering.
They teach us how to never give up in this fight for our lives.

[zazza]

I've been wondering how you are doing. Glad to see you back at the forum. I will be watching for your posts to see which decision you make concerning continueing/extending/stopping treatment, being a fellow slow responder myself.

[cruelworld]

i havent chickened out yet, but i see you and wintre are diving in for the 72
death march! i think the only way i can fake myself through 72 is to never comit.
since my sides could be a lot worse, i might be able to grin and bear it. glad to see your bravery

[zazza]

I like that faking/non-committing strategy! Remember we are right here watching your back as you go ahead in this struggle, whatever direction you decide to take.

[Proactive]

I have to agree on the 2400 mg riba/day, could you imagine, youser..I've shed a few lbs the last few weeks and am now at my tx starting weight of 170#'s. My riba dosage was increased twice and have been doing 1600mg/day since week 12-13(now in wk 30)..Not sure I could handle 2400 mg/day..I think Bill is on 2000mg/day if I remember correctly.

[jmjm530]

Hi Cruel, glad you're hanging in there and still riding!

As to the Swedish study, yeah, some of the doses were quite amazing, but they were very individualized based on special HPLC riba serum testing that is not available in this country, at least the last time I checked.

As you mentioned, everyone ended up on Epo (Procrit) AND supplemental iron AND two out of the ten had multiple transfusions. So definitely something not to try at home, or probably not even with a doctor in this country who does not have the proper tests available.

If memory serves me, it was 9 out of 10 that ended up SVR, but I don't think they had too many cirrhotics in the study, if any.

What might be interesting is to see how very high dose ribavirin would work on a shortened  24-week protocol for geno 1's. My hunch though is that newer funding will be going primarily the newer drugs at least in this country. In spite of the fact of the weight-based dosing (WBD)studies here, I think I saw only one study here that went beyond WBD and it was for overweight individuals.

As a cautionary tale, I tried to emulate the Swedish study myself right after it was published and thought seriously about flying to Sweden for a consultation and to have blood drawn for special testing.  Since I found out about the study about seven days into treatment, I actually accelerated their protocol to catch up for my missed week of higher doses. Well, I ended up in the ER about ten days later and actually had to go off riba for close to a week. What a messy way to start things off! After that, it was back to my 1200 mg/day which I kept for the rest of treatment with the exception of seven days (around week 36 I think) when I dropped down to 1000 mg/day.

Good luck with treatment and make sure to check your hemoglobin every week or two until it stabalizes, and do ask your doctor for Procrit if needed.

All the best,

-- Jim

[cruelworld]

your continuous and encouraging presence here has helped me through many a night.
thanks and keep it up. i plan on writing tributes to all the heirarchies of
warriors. help me find a name for your group. "short time warriors"? yall are every bit as vital to the whole as anyone. spread some more good will bug!

[cruelworld]

i see that its been worse than rough for you for a while. i hate to see this. i used to talk big about double dosing and things like that, yet with only one extra riba a day i feel real bad im not sure if im going to continue it. when i get below a certain theshold of energy i fall apart mentally. i realize now how bad it is for you when you calculate the remaining minutes of treatment! weve all done it with days hours, etc. but never minutes! remember there is only so much of this you can take, so dont let your bravery cost you more than its worth. how are all the birds?

[BThompson4]

I would not lose sleep over not conforming to the 48 weeks of soc dictated by the study.  It's not like the study administrators are using the control group to learn anything new.  Studies of 48 weeks of soc have been done to death.  It's only protocol for the study.  The study designers fully expect lots of relapsers in the control group.  More relapsers among soc treaters will only make the vertex product look stronger.

I am geno 1 and cleared between 20 and 22 weeks, and am in week 47/72.  I would be depressed as hell if I had to quit at 48, as I probably would have no more than a 10-15% chance at svr.

You might consider getting a hepatologist to approve an extension for you before week 48 comes around.  And if paying for treatment is an issue, Commitment for Care can often provide free meds for weeks 49 to 72.  Of course, you might have cleared at week 12, in which case you would probably have better than a fifty percent chance of gettin svr in 48 weeks.  I might try to get a pcr outside the study at week 16 or so; if you are not clear by week 16 or so, extending might be a good idea, if you feel up extending by the time you are in the forties.  I felt awful from about week 30 to 40, but have since turned a corner and feel I can easily make it to 72.