open thread

Sorry, I used it and didn't want to lose it.  Ducking out of the line of fire now.  :)

[FlGuy]

And you can't blame it on tx either.

[amommy]

Oh puhhlease.  The brainfog shows no sign of letting up.  Hmmm, perhaps that is just my normal flakiness.  Shhh don't tell.  I also claim 2 year old distracting me :)

[amommy]

Hi Jim,
You must be coming up on your 12 week soon.  I am certain it will be the un-d you deserve!
I know you have posted this info before, but I could not find it by searching.  Can you enlighten me as to the "accuracy" of a 4 week pcr?  I know the 12 week and the 6 month correlate very closely.  But, how does the 4 week correlate to the 12 week?  
Thanks for any info. you have!  Hope you are continuing to improve every day!

[Rogirl]

Fan of bumper stickers? Here are a few...  

1.  Save the Whales. Collect the Whole Set.
2.  A Day Without Sunshine is Like...Night.
3.  On the Other Hand, You Have Different Fingers.
4.  I Just Got Lost in Thought. It Wasn't Familiar Territory.
5.  Honk if You Love Peace and Quiet.
6.  He Who Laughs Last, Thinks Slowest.
7.  The Early Bird May Get the Worm, but the Second Mouse Gets the Cheese.
8.  Support Bacteria. They're the Only Culture Some People Have.

[Dale_Ray]

Thanks I needed that. Dale

[Mister beagle bailey]

Like I said I turned a corner, and to my surprise the silly wabbits are now chasing me!  

Beagle

[amirtracy]

hi there. just wanted to say hello to you and tell you that i too feel like ****. :)

[can-do-man]

Id get them paws of yours a moving. Them silly wabbits catch you and you being a beagle could turn ugly.

[Mister beagle bailey]

LOL LOL
Saw earlier that your feeling better.  Tomorrow I'll get my procrit and find out what my HGB is, I hoping it's around 9.2.

A Beagle

[can-do-man]

Whats wrong with my little popcorn eating gal? You know if theres anything 'can do can, can do will' Hope you get feeling better soon.

52tele, hope you get rid of the crapy feeling soon. Take care now ok

[jmjm530]

NY says: These new Vertex trials are going to be EXTREMELY limited in the number of participants that they allow in ...It's not going to be something simple like "just signing up"...
--------------

Vertex projects around 1000 participants in its various phase II trials by early 2007 with what looks like just under half in the United States. Phase III is projected to start mid 2007 and I assume they will at least double or triple that number if things go well.  Maybe it's a matter of semantics what you mean by "EXTREMELY limited in the number of participants" but SOMEONE is going to get into these trials and if after careful deliberation a particular someone decides that these trials may be beneficial, then I see no harm making reasonable efforts to enroll.

NY says: Vertex makes no sense to me since right now as I understand it is Interferon/Riba and Vertex that is being tested with the best response right?

Vertex isn't just for folks who cannot or do not want to take Peg and/or Ribavirn. Already Vertex has shown in a small group that it has the propensity to turn most folks into RVR's. This theoretically will then translate into a larger perctange of SVR's -- and right now as you know it's a 50-50 proposition with peg and riba alone.

Equally important, Vertex is testing shorter treatment durations which would mean less exposure to the treatment drugs. So even though it's the same Peg and Riba, it would be less time. Someone here stated recently that they could do 12 weeks of Peg and Riba standing on their head! That might be a bit of an exageration (unless person has very strong neck muscles) but personally I see a WORLD of difference in treating 12 weeks versus 48. Of course, the 12 weeks may not turn out to be the optimum dose duration, but it will be tested.

I'm not pro or anti Vertex, and unfortunatly haven't bought any stock. I do think, however Vertex, and its current/upcoming trials have to factored into any treat or not to treat decision, as a person and their doctor sees fit.


FL says: In my case, I know that vrtx is quite a way from relapsing cirrhotics.

I don't know if that is correct or not but might be worth a phone call or email to Vertex. From their press release, phase IIb is for relapsers but not sure if they will admit stage 4's. According to the release, phase IIb will start either in the second half of this year of the second half of 2007. I think they mean the second half of this year but the release is badly written. Again, something to check on if it makes sense.

Merlino,

Although there is some debate both here and in the medical community on this -- all things equal, I personally wouldn't treat now if I was a stage 0 or stage 1 and not even sure if I'd treat if a stage 2. I wouldn't treat now with the current drugs and I wouldn't treat with Vertex since there would be time to wait and see how the trial data comes in.

It's true hitting the virus early may offer some advantage in terms of SVR, but you have to weigh this against the risks of treating. Besides the treatment itself, some  report lingering side effects after treatment that may be permanent.

Personally, I feel like I've aged 10 years since treating, and I've heard this from others. Problems include autoimmune skin problems,  memory not close to what it used to be and other cognitive issues. I've only been off treatment 11 weeks but have heard similar from others who have been off longer. One member, Double Dose reports a grouping of autoimmune symptons and I believe he's been off the treatment drugs for a couple of years.

It's said that treatment  diseases/conditions/issues that are under the surface, or potentially can make existing conditions worse. Problem is how many of know what is under the surface? And frankly, if I'm going to come down with some autoimmune disease, I'd rather come down with it 10-20 years from now as opposed to coming down with it as soon as I start treatment.

Anyway, lots of luck in how you decide. The only advice I think most will agree with is to become as knowlegeable as you can in hep c, to study all your options and to consult a variety of sources including perhaps at least two liver specialists, other discussion groups whose members may offer differing points of view, as well as articles, commentary, studies, etc.

Hope this works out for you whatever your decision.

-- Jim

[strator]

Hey is this the feel like **** thread?
tracy and 52 -I feel bad for you. I luck out so easy somedays on tx I wish I could divy up the good days.(although today wasn't one of mine you'd want)
Mr BB- I'm feeling guilty here. My cbc came back at 11 and it's only ever been one tenth lower. I don't know how you do it with the invisible blood.

Can Man- I always feel bad for you cause you gotta tell us funny stuff. So who 'feeds the zookeeper'. Left you and friole some answers down in 'Coverage of DWeek.' Seems the threadmobile is more populous lately. In the beginning I use to think a few threads down was old stuff. But you seem down a little of late.  You okay?
Pops

[can-do-man]

says......Equally important, Vertex is testing shorter treatment durations which would mean less exposure to the treatment drugs

Even if its not 12 weeks but 24 weeks with better odds for geno 1. Sure beats what we do now. And the less exposure the better.

[can-do-man]

says.... But you seem down a little of late. Na, but you know even i can't be 'up' all the time...JEEZ.....

As for who'feeds the zookeeper' sure ain't been you pops. So either feed me of feed me to summin.

[jmjm530]

cdm: And the less exposure the better.
-----------------------------------------

Except on the beach, and I'm not referring to the sun.
-------------

But seriously, I agree with your statment. ANYTHING less than 48 or  the extended  60 or 72 weeks or more, some of do is better. Add to that better odds of SVR and you have maybe not the perfect mouse trap, but a better one. Hopefully, the trials will go the way we're all hoping for.

[FlGuy]

I should restate about vrtx, trial and me.  In speaking with the Univ of Miami Study manager she indicated that they will be sourcing trial participants later this year.  She pointed out that 'typically' my trifecta as a 3a, cirrhotic, relapser are usually in latter phases. 'Usually' and initially they go after naive geno 1's and then work their way through the various slices of the hcv population.  For me, planning to re-tx this August, the risk of waiting another 6 months or so is a risk that I'm not able to take right now. I can see it now, the day I do the 1st shot and riba, they call.

[amirtracy]

hi guys. thanks for the words.. if anyone knows- you guys do huh?
chin up's what i keep tellin' myself. it could be worse...i'll be back to play later on.  :)   t.

[Mister beagle bailey]

How are you feeling, any better yet?  I think I turned a corner, after weeks of having a fever.  Did shot 22 Sunday and no fever.

Beagle

[can-do-man]

Dale, hope your doing better and all is well.

beagle says...I think I turned a corner...... You mean your not sure if you made a left or right turn? Quit chasing those silly wabbits and you might know.

[52TELE]

I feel like ****.

[jmjm530]

You posted something recently about a friendlier fiber concoction you take. I've bried both Metamuscil and ground flax, but both seem to irritate my system. Appreciate it if you still have the link and do you know what's in it? Thanks.

-- Jim

[jmjm530]

Fl,

I agree about not waiting in your case past your August start date and it also sounds like you're in exactly the right hands at U. of Miami. Still, probably not a bad idea to keep an eye on things, or even make an application -- specificially for the Phase II study that possibly may start around the same time, and who knows, you may just end up being the token stage 4 ! Anyway, all the best luck and I've just to say how much I admire your attitude after getting news of relapse. I just couldn't of handled it with your calmness, grace and postive attitude.


Tele,

Well thanks, except what you didn't see was earlier today (or was it yesterday :) ) when I couldn't remember the word "Neupogen" which I've read and used about a 1000 times in the last year and never had a problem remembering during treatment. Almost "googled" the word but my pride would't let me so I sat for about five minutes till it finally came.  Many other examples, not to mention, stalling in the middle of a conversation because some simple word somehow got lost in my mind or the fact that I don'tg quite enunciate the way I used to with people asking me to repeat myself -- again, that never happened before I treated. I hope it's what my doc calls "inteferon hangover" but we'll see.

-- Jim

[jmjm530]

Make that "Phase IIb" study, not simply "Phase II"

[returntosender]

While I have your attention here - do you know the length of time that Riba stays in the system after tx. Seems that I read many posts that say it is 6 months.  I looked into this and the longest I found was about 5 to 6 weeks.  Do you have anything definitive on this?  How about PEG?  Looks like that leaves the system pretty quickly?  

Whats the deal with 6 months? Why is that number connected to the SVR?  Is there some connection between that amount of time and the time it takes to get the Riba out?  Before you lose all cognitive skills entirely - your thoughts would be appreciated? By the way, I would take your drug addled brain over my pre treatment brain any old time just let me know when you are tiring of forgetting words - I call everything a "bucket" and my family knows what I mean because I point - kind of like a springer spaniel!

[Pdilly]

Go for it.   So far everything I have read has been good pretty much.  I know we have to be careful but if all else fails I think it at least gives you a different avenue to try.  Wouldn't it be great to have this one work?

[stangshelly]

can anyone come to speak on an open thread? still new and a bit foggy tonite must be the heat 94 here today ugh

[jmjm530]

Return says: Before you lose all cognitive skills entirely - your thoughts would be appreciated?

LOL. I'll try and squeeze in a coherent answer before I start talking to my unicorn :)

Return says: Do you know the length of time that Riba stays in the system after tx...Whats the deal with 6 months?

I don't know exactly where the six-month figure comes from but probably derived from some mathematical regression formula based on riba's long half life, perhaps combined with some research post tx testing. That's why, for example, you are supposed to use two kinds of birth control both during tx and six months post.

My doctor told me in terms of side effects I might feel -- that most of the Peg would clear my system in a few weeks and the riba in about three months. Based on my experience, I'd say most of the Peg  cleared my system in about two months and the riba at the 10 week mark is about 80% gone. But just because the drugs physically clear doesn't mean there can't be some lingering problems from when they were in your system. For example, I can now run -- albeit slowly -- stadium steps which couldn't even come close to on treatment.  But skin, sinus, digestive and cognitive issues linger on.

In terms of SVR, the six-month figure probably came from some early trials/studies. Later studies confirmed that being non-detectible at six months is very durable longer term. Recent studies now show a very good correlation between being non-detec at 3 months with being non-detec at six months. So much so, that one paper I read suggested that the definition of SVR be changed to being non-detec three months post treatment. This may also have something to do with the more sensitive tests now being used.

Return says: any old time just let me know when you are tiring of forgetting words - I call everything a "bucket" and my family knows what I mean because I point - kind of like a springer spaniel!

LOL ! Thanks for a good laugh -- but more thanks for a good tip !

All the best,

Jim

[52TELE]

Look at what jmjm530 posted earlier. Can you believe that guys brain still works that well. I can not imagine having to come up with that many intelligent lines in the same post. There are a bunch of them that can still think. Actually , I dont know if I could come up with that many intelligent lines BEFORE tx.

[jmjm530]

Thanks. I may give it a whirl although both psyillium and especially flax hve not worked out very well. I think the problem with psyllium is that I don't drink enough water, which I find difficult to do. The flax just seems too harsh.

[Forseegood]

yeaaah, I finally got *someone* at least interested in Ultimate Fiber, been leaning on Goof to try it, but alas, he sticks to that decidedly inferior (in my view) Trader Joe's Lumpy Dumpy stuff...

http://tinyurl.com/o7cgr what it mostly is psyllium powder, but ground down finely, which is good, and slipperly elm and marshmellow root



Uses

Slippery Elm is a valuable tree which has many different uses.

The inner bark can be ground into a nutrient-rich gruel. One can survive on this gruel alone for a relatively short period. It also contains a mucilage that is an excellent remedy for sore throats. It may be dried and ground to a powder, then made into a tea. Either the tea or the gruel may be used to soothe the digestive tract as well, such as with irritable bowel syndrome or gastritis. There are no known contraindications for Slippery Elm, since it consists mainly of mucilage and various nutrients; it is not technically a drug.

Slippery Elm is decidedly benign, and very useful for soothing the tummy, been drinking the tea for years, you can look it up all you want and you won't find anything the least bit nasty about it...and besides, I think the Ultimate Fiber has probably a very negligible amount of it anyway....

Marshmello Root is also used to soothe the stomach, etc. ditto for this, probably a very small amount used, I think you'll like it very much, everyone that I've recommended it to did...

[GoofyDad]

If I ever get you out on the town I'm gonna buy you a couple Ulimate Fibers and see what happens!

[Mister beagle bailey]

Hi Don,

That is great that your HGB is at 11.0, don't feel bad for me about my HGB.  As long as I beat this virus, that's all that matters.  Thank God I was able to get the transfusions when needed.  
How are you doing?

Beagle

[strator]

I'm doing better today, going to work  in a few minutes. The infection(boil on neck) through me for a loop. Actually had to call into work sick Fri and Tues. A surgeon they sent me to yesterday wouldn't take my insurance so the doc from my doc's office has me on antbiotics and hot compresses. Said if it's not getting better Thurs, go to ER.
Started the Abiotics last night and already felt imptovemnt this morning. Thanks. Atay Well,
Don

[Mister beagle bailey]

Glad you see an improvement.  Do keep an eye on it and go to the ER like your dr said if it doesn't get better.

Stay well,

Bob

[Forseegood]

I'd like to start a club of FRIENDS OF ALOE VERA, I can't say enough of the stuff, only once in a great while I get a little urpy, maybe from something I've eaten, and I drink a little bit of it, it just soothes my stomach right away...the native americans used it for almost everything...I remember I had a burn on my figer and I put some medicine on it, ouch! and it didn't do anything, put some aloe vera from the leaf on it, man it was almost gone in no time, hey whattaya say? do you think I like Aloe Vera, ha ha!

[jmjm530]

Foreseeskin say: but my digestion and skin are fabulous!!!!!
---------------------------------------------------------

OK. So give me some skin then. Whoops, that didn't come out right.

[Forseegood]

remember to mix a lot of water with the cocktail...I would really be surprised if it didn't work out of you...I've just heard you complain so often of all these bothersome skin probs, I really think the aloe vera juice will help you with that, along with a bowl of oatmeal a day, (with a few berries, cinnamon and vanilla soy milk, and a bit of maple syrup, yummmmm! take some before and after pics, those pesky skin probs will be gone!

[jmjm530]

Forsee says: I really think the aloe vera juice will help you with that, along with a bowl of oatmeal a day, (with a few berries, cinnamon and vanilla soy milk, and a bit of maple syrup, yummmmm!
---------------------------

Thanks! But doesn't adding the maple syrup make it hard to wash
off ?

Chevy says: Lady Forsee not only knows her bowels...

They say you can never know too much, but there is something to be said about drawing the line somewhere :)

[Forseegood]

hi, if you do get it, it says one tablespoon twice a day, no way I need that much, you might want to "titer up" too and use once a day, a little less then a tablespoon, in a tall glass. I use some water and aloe vera juice (something that could really, really help you with a lot of issues, your skin most certainly, and digestion and your regularity) Trader Joe's has a gallon of aloe vera juice for 8 dollars....

I use just maybe 2 oz in the glass if that, anyway, water, 2 oz of aloe vera, and a little fruit juice and the Ultimate Fiber. Mix it really, really well, and let it sit awhile, then mix it again. Almost guarantee you won't have any probs and it'll take care of your regularity.  Aloe Vera juice is very benign and helpful to the digestion and skin< i'm not trying to be boastful, but my digestion and skin are fabulous!!!!! Been doing this for years....