OPEN POST

[PasoPerson]

Just wrote a big note to Friole, posted below under "I'm pretty upset" by ohgreat).  Took a chance on an open "question" space.  Here it is ... it's all yours.
______________________________________

Friole, here's what I said below ...

Hey, I am still hanging in there, for sure. I am a stubborn cuss and WILL beat this one way or the other. Initial VL was 1.3 million.

Won't get into long story, but at 24 weeks I was a non-responder to Inteferon. VL dropped to 49,000. Better than not at all, but not enough to continue w/Inteferon.

I am now on "consensus" Infergen, daily shots. Also still taking my 5 Ribavirin daily. I thought it would be terrible, but so far so good. It's only been a week, we will see what's coming. GREAT IDEA - Forget who suggested it, but called specialty pharmacy and told them I needed to inject with THE smallest needle possible, like maybe neo-natal. I got it and cannot even feel the injections. Y'all remember that if you have to go to daily.

My PCR will be done every 4 weeks for at least 12 weeks. Depending on my response, and how I'm handling daily stabbings, I will continue to one year with daily shots OR stop all meds and wait for a clinical trial for slow/non-responders toward the end of this year.

Sides so far include losing about 80% of my hair ... now can appreciate what folks with bald heads go through in winter. I'm freezing without a hat! And the ever loving riba rash. Those are the two biggies right now. Oh, Procrit of course, and my best friend Paxil.

I'll try to keep you posted, feeling better now. You are rig

[friole]

You are so strong. Thank you for posting.  My total compassion to you on the daily shots.  I am so glad you were able to find some very small needles.  You made a good point about knowing when to quit pushing yourself.  I have that problem too, and so I must almost isolate myself sometimes.  

You did make remarkable progress on the interferon - down to 49,000 but I am glad you and your team took the agressive postion.  Check in when you can. So sorry about the hair.  I guess you have lost more than anyone else I have seen post.
Kathy

[can-do-man]

After reading your post about your driving, besides getting glasses might i also suggest you get a humvee.

[GoofyDad]

Doc convinced me to drop the riba from 1,200 to 1,000 'till we get the hgb above 10. It hit 10.0 once, but it's mostly been in th 7's, 8's and 9's for months. He's been pretty flexible with me, but I guess he's had his fill. 1,200 is over-clocking on the riba anyway, and I'm beyond the cut-offs for the short tx guidelines, so I guess I'm cool with it. Intellectually it's the right thing, emotionally, I'd be happier with the pedal to the metal till the end.

[jaroman]

Paso: I am very proud of you. You can beat it this time. Have you tried any of the Nioxin hair products? Some folks here say it helps.
Goof: I know how you must feel about dropping the riba. But.... you will still be taking enough to prevent breakthrough(which of course you cannot get b/c you are clear, clear, clear). Here's to some Hgb!
My dose change: Drew a PCR after 4 weeks of double peg. Doubled 2 more and just decided to go back to regular. Well, a month later, the lab says oops, we lost your sample. So now I will wait another month to get any results. I doubt I will ever know if the doubling helped.

[can-do-man]

Goof, id keep it quite if i was you on lowering your riba dose, if jim heres about you having a extra pill around everyday. Well he'll be beating your door down. Not saying jim wouldn't be a nice house guest. You just don't want to run the risk of that moth problem.

[NYgirl]

Well good for YOU!  You are ONE TERRIFIC PERSON AND A GREAT FIGHTER!

In three weeks depending on my 24 week PCR I may be going the way you are so thank you so VERY much for the encouraging words on the sides with Infergen! All I heard was bad things from people so far. I mean there is no way I wouldn't do it regardless but...You know how great a good report is!

The results with Consensus are supposed to be SO SUPERIOR to Interferon I am SURE you will be a responder to this one I just KNOW IT!  

It's just a shame that for most it's so rough doing the daily.  I am going to remember to ask for the neo-needle as well.  They gave me THREES last time for my Epogen and it's like a freaking foot long it seems to me (but I am too cheap to get new ones until I use them up. Maybe they can be returned I'll have to ask I mean they are in protective wrap LOL).

BEST of luck Paso - keep up the GREAT WORK AND SIDE FREE TX!!!!!!!!

Debby

[jmjm530]

Did I hear xtra riba going to waste? What is it with you geno 3 woosies anyway :) Look, if I promise to keep my moths on a leash...

-- Jim

[OnAPrettyPoison]

I am new to the forum, I have just lurked, can't really post at work, and the home computer died and just got a new one.  Have 1A, starting VL 108,000, 1/0, cleared at 12 weeks and just got 25 week pcr and am still clear!  Woo Hoo!  I am really excited the meds are working.  Am week 26/48, no real sides except the anemia and have really started shedding over the last three weeks.  Otherwise I feel fine!  Thanks for all the info over the past few weeks.  It is really nice to communicate with someone who knows what it is like to go thru this.

[beamishboy]

xtra riba? riba period-i hate this poison& i'd rather get shot in the foot then take more!..but if i had to,i guess i would
Paso,ONapretty:great to hear good news!!Goofy: i'm sure you are clearin out the bugs,not moths, Goodluck All

[strator]

Hey congratulations on your clear PCR's. Gives me a shot of hope everytime I hear clear. Outta be a cah register sound effect to ring out when you type it. WOHOOOOOOOOOOO is right!
Stay well,
Don

[OnAPrettyPoison]

I know it really is poison, but if the poison works, you might as well suck it up and like it.  But more than half way there helps.  Today I was thinking, only 895 more ribavirin to go!  (And 25 more shots of Peagasys, and 25 more shots of Procrit);-)

[OnAPrettyPoison]

I know it really is poison, but if the poison works, you might as well suck it up and like it.  But more than half way there helps.  Today I was thinking, only 895 more ribavirin to go!  (And 25 more shots of Peagasys, and 25 more shots of Procrit);-)

[can-do-man]

Welcome aboard, glad you decided to post, "i think". Wonder though, this low vl, little damage, clear at 12 and 25, hardly any sides, feeling fine, and then theres that WOO HOO.

You just wouldn't happen to be a "rubbing it in to us poor saps" here would ya? :)

Just kidding ya, glad your winning and having a mild time of it.

Hope to see you post more often, and also ONLY 895 ribas to go? you need to get with jmjm530 here. I thought he was the only one that new the exact number of those ribas. Good luck to ya.

[OnAPrettyPoison]

Oh no, I am thrilled to be at this spot, but I am not taking any of this for granted, know it could be another story any time.  I treated now because it was good time in my life to do it.  Good insurance, flexible schedule if I needed it, Well, um, there is that not getting any younger thing.  I probably got this in early 80's (well pretty sure, diagnosed NonA/NonB, they thought it was my BC pills.  I wanted best chance of SVR, and I would have stressed more had I waited five or whatever years for the new drug.  My personality type is the let's get the bad over so we don't have to worry and they we have can fun and just not worry about it anymore!

[FlGuy]

You guys are both in the homestretch now, Jim 6-8?, Goof 2-3? Some prior discussions were around the theory of building the riba levels early in tx with the concept of lowering toward the end of tx. Goof is a lttle closer than Jim. Goof just reduced, sounds like grudgingly (a little riba jonesing perhaps)and Jim a few weeks later. With the riba-induced problems you guys have had do you plan to reduce further, or reduce at all?  I think I know the answer but I wanted to throw it out there for others who are considering or may be in a similar position.  And, when you do finish do you have any specific tactics for flushing that stuff out? (ie ACV, herbs, Drano, power flush with coffee)

[beamishboy]

hey i'm 'sucking up' 6 ribas a day,and it's workin..(knock on wood) but that don't mean i gotta like the ****!.....if need be,if warranted i will take more for a longer period-like yu,i'm doin a personal countdown:34 to go!.....i remember readin posts about those lookin forward to peg-shot....my best day use to be just before shot,now it seems my body craves the stuff-very worrisome? is vrus rallyin in the trough? i am still waiting on my 12 week vl test..somebody goofed& i got tested for HIV...lucky they still had enuff blood drawn from week 12 to do over.......aww heck,i gotta be responding,but this suspense adds nothing to my quality of life-just more time to reflect on my path to CLEARANCE!!!!!!!!!-we definately live in interesting times,Cheers

[strator]

Hey all - YES! I did get sleep last night. Woke up once with a subdued itch and put some sarna(menthol-camphor OTC strength) an d then it was bsck to ZZZZZZZZ. Thank you. Bob the hyroxyzine they gave you is the Atarax pasoperson and cuteus also suggested. Alsthough mine are 10mg but maybe because I'm barely 140# now. Question though, mine says 1 every 6hrs. I'm a little hesitant about trying it during the day, especially if I go to work. Don't wanta be too tired or cross a wire someplace and put all of us in the tri state area in the dark. Well- that'd be a stretch but you know what I mean. Any of you use it during the day?

Beamer- HOW you doing? Happy seeing you up and posting. That happened to me last year,pre tx,  they tested for HIV instead of a HCV PCR. All's I knew was it was it was 2 weeks waiting, then they told me I had to take test over, no comments when I asked why, then more waiting. My doc finally told me and of course just said the good news is I was neg for HIV.
Don

[friole]

prettypoison -- nothing pretty about those cute little pink pills.  How nice of you to buy a computer to join us!!!! Remarkable progress. Contgrates.  Try some Nioxin for the hair - seems to have helped me.  Welcome

goof -- can't believe they want to boost your hgb during the last 2 weeks or treatment.  Sounds weird to me.  Are you going to continue the PRocrit after tx until your system builds back up (I hope)

jarman -- that totally suxs on the PCR.  At first I thought you were saying your vl went up 2x - but I think you were saying you stayed on teh double peg for 6 weeks - is that right?  What after this PCR.  Will you try the infergen if this is not working?

beam -- good to see you. Are you taking the PRocrit?  How are the shots going and do you see any effect yet?

strator - I am glad you finally are getting some relief on the itching. Don't ever think any side is a minor side and not worthy of discussing.  I am just glad the meds you found and the OTC stuff in helping.

[NYgirl]

You have the same attitude as me (I got this about the same time as you and only found out in August).  Kill it now who WANTS this creepy stuff inside of them if they can help it?  Yuck.

Here's to killing all of the cooties off for good!

[strator]

Speaking of open posts! Where and how are you all? I'm sorry if I've missed posts by any of you the last few days but I'm pretty much a frikkin 'Ditz' as my son says. Says that's why he's studying hard, so he can put me in a 'home'.
How bout a checkin?
Took Dad to the hospital for a urinary infection yesterday. His doc says 'How's your appetite?'...Lousy Doc, that's not like me I love to eat." I chime in.."hey thanks, I didn't realise you like my cooking.".. 'Trust me it ain't your cooking I miss, I just wanta live."
All Be  Well,
Don

[Mister beagle bailey]

Good morning,

Hope your feeling better today. Sorry with all going on at work. What month will you be done with tx, I for got?

                 BB  :)

[FlGuy]

Beagle:  Let me handle that one for NY, That Girl has got a lot o'stuff going on right now and she needs a little schedule help. He biggest challenge right now is to make sure that she does not walk out the door with one 6-inch spike shoe and one flat.  She could spend the day walking in circles.  Her week 24 should be aprox 2/24 and her 48th around mid Aug.  She will be clear later this month.

[GoofyDad]

Friole: <i>can't believe they want to boost your hgb during the last 2 weeks or treatment. Sounds weird to me. Are you going to continue the Procrit after tx until your system builds back up (I hope)</i>

Doc has just hit his limit on the hgb - thinks I've been under 10 for too long. My most significant sides have been cognitive and fatigue, and he doesn't want to risk those becoming long term. I think my trip into the low sevens bought me higher scrutiny. Risk/benefit analysis: I seem at higher risk than many and have less to gain since I responded well early on. I'll keep on the procrit 'till hgb looks better.

FLguy: You've always been a riot, but you're getting sharper these days. Nice to see you feeling well. Circles in deed, LOL.

<hr>

FLguy raises an interesting topic I've been chewing on lately. We all know I have a bias against these meds, and I support shorter tx protocols, etc. But interestingly, when it comes to my case, I seem to go the other way. Stretched 16 weeks short tx to 26 weeks. Letting hgb go lower than prudent.  

I think part of this comes down to a question of intellectual decision making vs. emotional. Jim may have touched upon this in a post a few weeks ago. Unbiased analysis says that stepping down the riba at this point makes sense for me. Continuing past 26 weeks does not. But it's hard to separate the emotional from the analytical. I think it's something for each of us to consider when we make choices about whether to treat, dosaging, durations, etc. How would we look at these issues were we advising someone else?  

Food for thought anyway.  



  

[jmjm530]

Good points. I agree the emotional does enter into the tx decision but in my case this was further compounded when my treating hepatologist came up with a different conclusion from my two consults thereby putting me into an intellecutal conflict as ell.

As far as advising people, I think the best way is to lay out as much information (studes, anecdotal, personal opinion) as possible so folks can make their own decisions. But always be clear what is based on a study, what is based on anecdotal, and what simply is your opinion.

Therefore, when I say I'm going to treat for 60-weeks, I'm always careful to point out that the 60-week recommendation was made by my treating hepatologist (because of age and histology) while two equally qualified consults looking at the same data only recommended 48 weeks.

My *opinion* is that this may have something to do with the fact that the other two hepatologists treat with Peg Intron and not Pegasys, but I have no facts to back this up and freely state this. It may also simply be that there is too little data accessible on geno 1b's who are over 50 with stage 3 and with RVR's.

My *decision* to treat for 60 weeks is based mostly on the suggestion of my treating doctor, but partly I'm sure about the emotional insecurity that you talk about. But one thing is sure, at some point, all of us have to take our last shot and let things fall where they may. Good topic.

-- Jim