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86075 tn?1238118691

Tallblonde

hi, hate to be so public in telling you this, but I have no other way really.....you and I have always been in "somewhat" the same boat in terms of how we've been dealing with our disease, anyway, I had a fibroscan today, like a few other members here....and I think it would be great for you to get one too, great relief off my mind and there are no big gauge needles to deal with! You probably know it's a scanning procedure, that gives you images of the entire liver...anyway, don't know if you do, but if so, Ina has my info and I could get you in touch with the good doctor, it's here in Los Angeles in a fairly beutiful setting...hope youre well...

Just taking a chance, don't even know if youre still reading...maybe so...
116 Responses
86075 tn?1238118691
hey, soooo good to see you here! Missed your intelligently thought out and informative postings...I hope youre doing well, wish you'd post more? But I understand if you'd rather take a hike, ha ha! yeah, I thought, I'd at least see a few physicians besides my own, put out feelers, etc...at least maybe be a little more pro-active then I have been...the 4 week thing is very interesting, and Jim, a good point about the unimaginitive mind...

I have something for anyone who wants to take a stab..(being very aware that most of us are laymen afterall and not experts) I have a friend Gary, who is now 65, know him from an old hep c support group I use to go to. He did those horrible mono-therapies with interferon twice a long time ago before the multi-therapies, then just before the pegs came, they gave him infergen/interferon at a high dose, and he stared seeing things in the 4th month, so they took him off it...

That was years ago now. He said for 4 years after this, his viral load remained very low, and his labs were good. He's a 2b. Then his viral load jumped up again after the 4 years, his lft's started going up too (they had remained pretty normal  for a few years) But then everything went down recently, his viral load is only a million now, and his lfts are pretty good...He recently did some scans, MRIs, CT-scans, etc and his last biopsy a year ago were all pretty good, he's still about a grade 2. He's wondering if he should take a stab at the combo treatments, even though his docs told him that he probably had developed a resistence to interferon for treating so much with it...He feels pretty good for a 65 year old...

Also spoke with his friend, a woman from the same group, who has been cirrhotic for 14 years now, she's still hanging in there living her life, and is okay for the most part..she never cleared the virus either..this disease is just all over the place...
Avatar universal
I'm assuming you mean he's "STAGE 2" not as posted "grade 2".
----------
Assuming stage 2, he has choices. One is to wait and keep monitoring his liver damage. Another is to take a stab at treatment per my conversation with Willing.

In other words, instead of guessing if he's built up a resistance to interferon, why not put him on treatment and do weekly viral load tests from week 1. If he becomes non-detectible by week 3 or 4, then continue on for either 12 or 24 weeks. My choice would be 12 weeks. BUT if he doesn't clear at week 4, then stop treatment and go back to a watch and wait strategy.

As to what I'd do in his position, I'd probably reserve any decisions until the end of this year when we should have more complete VX-950 data.

Hope this helps.
'
-- Jim
92903 tn?1309908311
Did he have a resonable viral decline on the interferons? If so, and no breakthrough, it strikes me as odd that their crystal ball can predict resistance in a vaccuum. However you spell that word.  
86075 tn?1238118691
yes, he did have declines...I just thought it interesting that his doc told him that he's built up a *tolerance* to interferon, so no go on treating with current soc...how can he know that for sure? I told him to definitely get some second opinions, like go to my doc....He feels pretty good like I said, he even told me, that he figures he'll die sooner by the hand of some guy who finds him in bed with his wife - then he will from Hep C, that from a 65 year old is pretty dang postitive, no pensez - vous pas?
Avatar universal
forsee : In the absence of pegylation the body would quickly break down the injected ifn so really the only people that responded to monotherapy were those very sensitive to ifn's effect. Failing mono wouldn't be strong evidence of "tolerance". On the other hand, 4 months of daily(?)/high-dose is more ifn in the bloodstream than could ever result from current pegylated dosage and 4 months isn't that far from the soc 6 for 2s so that would seem to be the more telling indicator. However, at 65 as a stage 2 if life is good why go looking for trouble? Methinks he's better off taking his chances with his friend's wife. Anyway, vx should already be considered  part of the current soc - though not yet well-characterized. Even if he feels eager to tempt fate, waiting a year for the pi dust to settle  seems advisable.

jim: yeah - but you have to cut and paste all the urls, even the tiny ones, that's a lot of work! And it makes you lose the flow of a post; links were definitely better.

susan: glad to hear you are well. I still have you to thank for getting me on to green/white teas!
Avatar universal
Good to see you!  The tea advice is small potatoes compared with the reams of HCV information I gleaned from reading your posts over the years.  

Nevertheless, drink up!

Susan
Avatar universal
I agree that that the links were better and don't cut the flow of a post. As to the time involved, I'm curious if you use a special program or how you're able to create links faster than simply posting url's. When I tried to create links, first I wrote out the html code, then I inserted the link (tiny or otherwise) within the code, and then I had to insert the whole mess within the post. Took me twice as long as simply copying and pasting a link. Any tips on creating links quickly would be appreciated, not for here at the moment but elsewhere.

-- Jim
Avatar universal
forsee.  I feel great.  Fat but great ha ha -- that $85,000 Peg-Riba diet was the greatest!  Having problems working it back off now, after adding all the fat to absorb the dang riba I have had a hard time dropping it back. - Nothing new, really, back to the old Bean - always struggling with weight and usually constipated (sorry guys -- the peg-copeg diet was a great laxative too).  Energy wise, I feel fine.  Before txing I was getting tired more than I thought was normal.  If I had 3 drinks (2 was my max) I could feel the longer recovery time in the morning.  I think that was my logic to decide to do something -- the fact that I could feel my liver overworking after drinking.  But now the only way to test that would be to have a drink -- someting I have not done since May 05 - when dxed.  As far as energy, that is hard to tell.  My energy was so totally sapped on tx, I know that I have more now than during tx, but I don't know if it is more than pre tx. (make any sense?)  

Goofydad - the mind may be sharper but the spelling still sucks.  Have a goofyday, goofy dad! (I got my tax return all ready a month or so ago, but I really don't know when I can get back into it to finish it....) No -- I hate to wait until Oct 15 - plus with both of us self employed, I really really have to watch to make sure we have given our proper quart of blood.

Willing  -  I don't know if I ever knew your age but what exactly will be your criteria to re treat?  I am 59.  Waiting 3-4 years just doesn't sound too smart for me.  However neither does injecting poisons to the point of other damage.  I do think I have some neuopathy damage -- it may be declining -- but highly sensitive toe tips and fingers getting numb alot (of course, it was winter).  I say this to say, it is possible that these kinds of conditions might worsen if I txed again.

Forsee - I think age will have a great bearing on your friend too at 65.  Heck - my mom only lived to 65.  Truly, if I never tx again, I will die of something else, not this. But the QOL issue is always present. With your friend, I would think the liver decline issue would have bearing.  I don't know if I would try in his shoes or not -- that is why I am thinking it is now or never for me...

When the Berg study came out, you (Willing) wanted to categorize me in the <50 category, not the <6000 category (since my vl at week 12 was 40).  Seems that there is a lot of stroke to the fact that if you are not clear at 12, you are really in a cr@p shoot.  There are some posts on the other side by zazza (I sent her the Berg study) who is trying to make the same decision now, based on haveing a vl detectible, but less than 15 at week 12.

Wow -- look at the number of posts here -- go go go
Avatar universal
WoW... Great To See Yet ANOTHER Valued Informative Name Returning... I have always enjoyed reading your post!

Welcome Back!
;)

This place is stating to feel like home again!
86075 tn?1238118691
nothing like a little peace and good will huh? We even have an edgy little debate for those inclined, among people who are friends, couldn't be better! (Like a lot of people here) I have been enjoying the relative peace here lately, and I don't mean "piece" Goofman!

Friole, thanks for your comprehensive answer!

I'm so glad that Kalio, Tallblonde, et al have been getting helped by thier regimens!
Avatar universal
Interesting thread.

I've got  about an hour of information from my consult yesterday that I would like to 'condense' and run by a couple of you here in a few days.

Breeze
Avatar universal
yes - I remember, and I feel guilty about it too for adding to the disappointment... We'll never know how many of the berg < 50 would have shown vl  of say 40 with a more sensitive test (that's part of my running argument with Jim about the limited value of getting tests at a sensitivity greater than that of prevailing studies).

I'm also 59 and have gotten hit by some neuropathy this year for the 1st time. If I recall your bx reading it was 1-2 and you know those 56 weeks gave it enough of  a break to possibly improve things - so we're in a similar boat in more than 1 way. I'm placing my chips on the bet that even if I did nothing it's unlikely this  virus will significantly cut into my remaining time/qol whereas I know exactly what another round of tx will cost - or to repeat a line from a while back I just don't feel like I need that much insurance.

Remember that with every year that passes the prospect of having to endure the current, shot-in-the-dark, generation of meds decreases. The escape mutation rate from Vx-950 is pretty low by all  indications to date. This suggests that the combination of  a combined protease and polymerase blockers (I forget the drug code for the polymerase) are going to put a *lot* of pressure on the virus and the need for ifn will be that much more reduced. Overall my strategy is to wait until 3 months of ifn plus some combo of "rationally designed" drugs yields a > 90% rate for relapsers .. till then I'm not getting back in the pool.
92903 tn?1309908311
Fat, constipated, and happily married. The good ones are always taken!

Take care gal! You sound great.
Avatar universal
willing- I wish I understood the chemistry as well as you.  "The escape mutation rate from Vx-950 is pretty low by all indications to date." It is what we are in need of, isn't it - the ability to stop all mutations.  Are there sub strains within genotypes that are able to mutate better than othere substrains?

goof - you make IT sound so appealing --- ha ha.  Hubby was a real gem for not booting me out during tx.  Think I will keep him.
87972 tn?1322664839
Holy cow!

A whole bunch of old liverlovers all in one thread. I don't get in here often anymore, but this post definitely smoked me out :).

Special hello to Willing; what a surprise; didn't expect to see you around until mid-may, for the '07 DDW stuff. Stick your nose in more often, or as time allows anyway...

Kath; I keep missing you in here. I've gone back over some old posts in here where you've tried to flag me, but by the time I see them, they're half way down the next page. If you get a moment, try me at w dot keyes at att dot net (this goes for all in here as well) and maybe we can get caught up?

Tall Blond/Susan, great to see you stop in as well. I hope you're doing well-- good to see you posting again. Are you still driving south of the river to see Dr. Cecil?

All the rest of you old f@arts take good care as well, and I'll see you around. Just to update, I'm currently in Tx number two, week 26 of 72. Peg-intron 200+ mics/week with ribavirin 2000 mg/day. Undetectable <5 as evidenced by TMA sometime between week 4 and 8. Side effects are minimal; blood looks good with Hgb staying up into the mid-12's.

Again take real good care all--

Bill
86075 tn?1238118691
you sound great all things considered, how inspiring!
Avatar universal
I just started a Z-pack for my throat, and feeling not up to par. If you don't mind checking every so often, I'll respond soon.

Ina
Avatar universal
Take your time...I'm battling the same "mother of all colds" that you are.  I'm not feeling up to par, either.   Hang in there.

Susan
Avatar universal
Yes, I'm still a patient of Dr. C.  I'm happy to have access to someone like him.  When I finally decide to treat, I believe I'll be in good hands.

Hope you're having an enjoyable Sunday.  Spring has finally sprung here.  Blue skies and warmer temps. Love it!

Take care,
Susan
Avatar universal
Willing: hat's part of my running argument with Jim about the limited value of getting tests at a sensitivity greater than that of prevailing studies).
---------------------------------------
Gee, been so long, I almost forgot, but since you brought it up:)

Others like Gish have written on the advantages of more sensitive tests, but according to "zazza" in the following thread, so has "Berg" who you often reference. http://www.medhelp.org/forums/Hepatitis/messages/45392.html

Unfortunatly, it appears to be in German, so if zein das not spreichen (sp?) :), maybe you can throw it one of those online translators or wait until HR comes.

Be well,

-- Jim
Avatar universal
Opened the PDF cited in Adobe and then saved it to "text". Ran text through the "Google" translator. I'm trying to figure a way to post the entire article without having to break it down into a dozen threads due to MH's character limitation per post. Meanwhile, here's at least one paragraph pertinent to our discussion. Any typos, etc per "Google" translator.

"A negative test result meant however not in every case that no HCV-RNA in the serum more vorhan that is. It has itself with the introduction high sensitiver HCV-RNA test shown, that a significant percentage of Patient with
Avatar universal
You asked me how I was doing in another thread. I answered, but a little late. Can't find the thread, but I offered you my Riba. After reading your posts, you don't seem to be ready to tx again so soon, so I guess you don't need it.
Hi my "fat" friend, don't forget, time is not on your side.

Ina
Avatar universal
No I never did catch that thread but reading here you seem to be doing oh so much better than right after tx.  My jaw just dropped when you were talking about your fibrosure and fibrospect numbers.  How remarkable.  I will look for that post for additional thoughts.  No - don't need the riba -- at least not for the present.  You got that right -- time is not on my side.  Maybe new doc will want another biopsy, but I doubt it.
Avatar universal
Hi Susan
Zithromax always works quick, plus a Xanax over and above the Lexapro, plus 14 hours sleep, and I am as good as new.
Really glad to hear that the crisis is over and family and critters are all together.
Marathon gab fest,haha that's a good word for 3-9 hours
jabbering.
Yeah, time is always an issue, specially when you have to drive every day such distances as you....it also takes an open mind and a willing heart to understand, that not every one has been given the opportunity to live a life like Heidi...let's leave it like that.

Coming to your liver, you may want to do Fibrospect II as well.
Last year, approx. 6 month post tx, I ran Fibrosure and Fibrospect back to back.
Both tests claim to be fairly accurate at stage 1 and 4, yet there was a full stage difference between the two.

I knew because of my excellent "true" liver function tests, that I probably had regressed by 2 stages, but I was stunned to see Fibrosure at O fibrosis with no inflammation, and Fibrospect placing me at end stage 1.

I took the middle of the two, and figure I am O-1, which is fine for me, but may be of importance to you.

I agree with Kalio and foresee, that HR's scan is presently the best all around. I haven't had one, but wish I would have known about him before starting tx.

Don't forget to chart your Albumin, Bilirubin and platelets, and always watch the trend. I think I said it to you before, the trend is your friend.
Hyperthetically, if your Albumin is 4, which is considered a good number, but it is not so good when you compare it with an Albumin of 4.8 only 3 years prior. Same goes for platelets of course. They don't have to go down together, sometimes the platelets head down first, sometimes the Albumin, but ultimately they will catch up to each other. Pro-time is prolonged later in the game, and bilirubin also takes time to move up.
Doctors never bother to look at the numbers as long as they are in the normal range.
It took 15 years for my Albumin to fall from 4.8 to 3.4 (3.4 is considered cirrhosis), and not a single soul said a word.

The post tx sides are bummer, and I have been disappointed that it is taking so long to clear them.
Knowing what I know now, I would still do nothing different except prolong the weaning off from Peg.
I do consider myself one of the lucky ones. Many here suffered just as bad as I did during tx, look at southernboy with his congestive hearfailure, meremet with that awful rash, Jim and his reflux, SFbay girl with colitis, and all the others. Let's not forget people like Rev and his auto-immune hepatitis and that lady that developed Sarcoidosis...both didn't clear and can never tx with Interferon again, what a special kind of hell.
Oh no, I am a lucky dog...just need to remind myself of that every so often and get my arse of the pitty pot.

After all, I don't have to worry about Cryo suddenly becoming symptomatic, or any of the other extrahepatic manifestations rearing their ugly head. My liver can withstand potential chemotherapy (which I would of course take with a little Peg) to show those remnants who is boss around here.
I don't know if you read the board last year, but I had this little breast cancer scare (turned out nothing), and I said to the oncologist I would only take chemo with 45 mcg of peg, and she said that sounded like a reasonable approach.
Anyway, I gleaned this from HR, just wish his "from the board vacation" would come to an end.
Like our good doctor said...it's a good thing to look forward to old age without the worry of HepC.

Anyway, I have been seeing an acupuncturist for my back, and it has been helping. We are discussing tx for my post tx sides. He has about 20 post Interferon patients, none of them cleared, I am his only SVR, and he said all of them take between 1-3 years to get over the Interferon tx.
I tell Ivette you said hello. She has not been reading here for the past 2 month. She is doing fine, her brain has improved too. She is playing some mind games to improve her memory and concentration.

Take good care of your self, of hubby, the horse and goats, the duck, chickens, dogs and cat....oh yes, I remember...sure like to know how the horse and goats are doing.

Very best to you,
Ina
Avatar universal
I just caught your update...  I wondered where you were at with TX... WoW... That's a LOT Of Riba.... I am Glad you are doing well... You certainly sound good... I hope this round will be the magic bullet for you... looks like you are off to a great start... Congratualations on the Undetectable status... & may your sx continue to be minimal for you!

Hang In There Bill

Ina..
Hey.. don't you call my friend FAT.... we're about the same size lately... LoL

Didn't realize you have been sick.... I hope you start feeling better soon! You'll finish the Z-Pack Today??? No??
;)
87972 tn?1322664839
Hi Vicki!

Thanks for the good words. I understand from another thread that you'll be going in shortly for your 12 month-post work-up; although it sounds like you got it Slam-Dunk, I just wanted to offer my best wishes to you as well. Let us know how things go, OK?

Best to ya,

Bill
Avatar universal
Stop butting in...I love you two fat females.
Only the fear of diabetes has stopped me from joining you.
Everything I like is illegal, immoral and fattening...so says one of those wooden things that you buy in the National Parks.

Ina
Avatar universal
I just read this whole thread again, can't find the link to the German study.

Also want to mention, that southernboy tx 5 times. His viral load always came down, but he never made it to zero.
HR said he had developed so many resistant strains, another approach without a third or fourth drug would not be successful. Last I heard they were working on a new regimen.

Ina
87972 tn?1322664839
Hi Ina, I think this is the German link that is in question. It came from Zazza>Jim>Bill>Ina>, through both boards, LOL! Anyway, take a look and see what you can make of it?

Bill
87972 tn?1322664839
Ooops, here is the link I promised.

http://www.hepatitis-bw.de/HepatitisCBergIndividualisierung2006.pdf

(I'm on dial-up, and I get so impatient for the page to load,I forgot to add the link :-)).
Avatar universal
Ya, das est de study, I think. If you open it in acrobat, then save it to a text file, you can use any number of online translators -- including the google translator -- to turn it into English. I did such just too lazy to break it into the dozen or so posts required given the thread limitation. But basically, Berg says I'm right and Willing's wrong regarding the more sensitive tests. LOL. I'd better go hide now :)

-- Jim
Avatar universal
Tell me a little more about your acupunturist like how long, how much, how its' going, for what and what is his/her training. So are you going for the Chinese herbal tea, etc. -- wasn't sure? Might help the ole immune system stabalize. I've been thinking about it myself but will wait until my one-year post treatment test comes in negative. Then I'll see but of course with frequent enzyme testing and with someone with references like maybe Zhang, Misha Cohen, etc.
Avatar universal
Yes Kathy, I am not doing so good, but comparing it to last year at this time, I am doing much better.
Got to take my own advice and watch the trend, and the trend is definately for the better.
Do you remember when I wrote about a knife being jabbed into my liver...my gawd, I had so much liver pain post tx.
That has slowly subsided. A few days ago I started taking Zithromax for a sore throat. That stuff is pretty hard on the liver, and usually I would get a whole lot of additional liver pain...this time none.
And all those joint pains, I thought I would be a cripple. Had to walk with a cane, a truly miserable time.
You know I am not sure if the Fibrosure can be trusted. HR said to take it with a grain of salt. Some of what they are measuring, like ALT, and GGT can fluctuate for many unrelated reasons. In the future I only do the Fibrospect, and at some point the Fibroscan.

I havn't been reading consistently, but I gather post tx sides are tx you kindly, maybe I am wrong.
What's going through you mind in regards to tx?

Ina
Avatar universal
tater - thanks for the kind words above - hope you are doing well.

Bill - good to hear you're doing so great -  you sound better than Tony the Tiger! Hang in there - you've got  great attitude and great wind in your sails (let's pray goof doesn't pick up on that) for the road ahead (and I thought DDW was June..)

Kathy: good question... HCV's low-fidelity replication strategy comes from of an error-prone polymerase so mutations in the polymerase itself could be expected to result in a higher error rate and thus more mutations. In general, as best I can make out,  little is known about what characteristics of the virus are correlated with tx success/failure (except for a long-running argument between French and Japanese researchers about the ISDR  that seems to come down to different patient populations : http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?itool=abstractplus&db=pubmed&cmd=Retrieve&dopt=abstractplus&list_uids=17133546

I think one of the best pieces of news to come out the vx trials is that the escape mutation rate seems pretty low.. the subset of virions that managed to mutate past it is small enough that even just more more targeted drug (like one of the forthcoming polymerase inhitors) should be enough to leave a very small viral population for the ifn. Still speculation, but I'd expect the next DDW or AASLD to report on small studies of combo HCV-targeted drugs.

Jim: Wunderful, wunderful, dast is krystal klear..here's where we need the benefit  of a german-reading forum member. Perhaps Ina will oblige. I'm delighted to see more studies publishing more frequent and more sensitive VL tests (another plus from the vx data) - but until this becomes standard practice having tests more sensitive than the published large-scale studies still leaves you wondering how to interpret them and provides limited help for the two key tx decisions (quit? extend?) - as Kathy's case makes clear..

INA : 0-1 ? Are we ecstatic or what! Congratulations
Avatar universal
Hi, yes I was happy to see you, but didn't post to you, because you never stick around.
I surely miss your links, what a bummer.
Yeah, I am ecstatic, 0-1 or 1...those are good numbers, and when I hit the dumps, which I do on a regular basis, I tell myself...but I am SVR, it was worth it.
There was a guy here long time ago who also tx for 2 years, but relapsed. He reversed from 3 to O. Treating 2 years gives better odds, but a guarantee it is not.

My Albumin 3 month ago was 4.5.
I keep charting everything, TSH, Alt's etc.
The only thing that is not budging are the platelets. They are stuck at tx levels, around 170-180. Before tx 220. And 15 years ago 300... you see they came down slower, Albumin took the lead in my case.
This is not my liver keeping them there, it's the bone marrow. I am not concerned, just making a statement.

During tx my ALT and AST reversed, with the AST being always about 10 points higher. At my last CMP 3 month ago they have come almost together.

My Rheumatoid factor is down to 30, before tx consistently for 15 years between 100-150.
This is actually very unsual. Every cryo SVR, after a short downward spike, regained their pre tx RA.

Not sure why I am telling you all those numbers...guess I am in a jabber mood.

As a matter fact I was planning to read that article, but please don't ask for a word for word explanation, just a summary.

Did you ever make contact with HR?

Ina
Avatar universal
Guten tag - whoa.. your level of organization is truly impressive! I'm doing well if I can remember my age. It sure sounds like with the possible exception of the stubborn platelets things are normalizing very well (and thanks for bringing up RA - I was supposed to get tested but keep forgetting to pick up the blood order - I'm gonna go NOW  before I forget again).  Was that BobK you were referring to ? That was quite a  success story - I think that kind of reversal may even be worth the pain of tx regardless of SVR outcome.

I believe this is the study Jim was referring to
http://www.hepatitis-bw.de/HepatitisCBergIndividualisierung2006.pdf
(boy, do I miss the html..)

From just looking at the pretty pictures it looks he's recommending 72 for anyone in the range 10-3000 IU at 12 but I couldn't make out how extensive is the data supporting his recommendation (how large a sample has he tested at the new level of sensitivity) nor what the 48->72 SVR improvement was for those who pushed through to 72 (in his earlier data the improvement was real but not that impressive).

Avatar universal
Tell me a little more about your acupunturist like how long, how much, how its' going, for what and what is his/her training. So are you going for the Chinese herbal tea, etc. -- wasn't sure? Might help the ole immune system stabalize. I've been thinking about it myself but will wait until my one-year post treatment test comes in negative. Then I'll see but of course with frequent enzyme testing and with someone with references like maybe Zhang, Misha Cohen, etc.
Avatar universal
I got it and made a hard copy. I will start reading tonight and summerize every paragraph. Understanding is easy, translating is a little harder.
I am busy all day tomorrow, but can do at least some on Wed.
I want to do this right, so cut me some slack. I may translate over several days.

Willing, you don't have cryo, right? Why do you think you need an RA, unless of course you have some rheumatic issues? Is there a connection between HCV and RA that I am not aware of?

Ina
Avatar universal
uh - I'm starting to feel like one of those polar bears in the North Atlantic - it really is just a (short) matter of time till there *are* large scale studies  against which to interpret the results of high-sensitivity VL tests (and if this article is reporting a large new data set collected at a sensitivity of 10 there's bound to be an English version somewhere). However, I'm willing to bet a donut you won't find any treatment recommendations hinging on the importance of a high-sensitivity test at EOT (even if this shows you in fact never cleared) or post-tx...
Avatar universal
Just got in after a very long day at work.  I'm ready for bed, but will respond tomorrow to your post.  Please check back later...
Avatar universal
Are you then conceding their importance at least during treatment? As to EOT, I suppose the importance lies in identifying those that are in the TMA positive subset of PCR negatives.  Since this entire subset will relapse -- at worst administering an EOT TMA will not keep false hope alive any longer than it should; and at best some action might be taken sooner such as re-treatment, a follow-up biopsy, selling the house, etc. That's quite a long article, so unless Ina focuses on some very short sections, I doubt we will get much further on that unless someone wants to go through the computer translation process.

-- JIm
Avatar universal
Ina: not that I know of. The neurologist ordered it as follow up when I noticed numbness in hands/feet and then I never went back to actually do the draw until your post today. If it wasn't for all the helpful reminders on this board (Susan about the teas, Jim about the bx 2nd opinion, Califa about the B12, you about the RA) I'd be in big trouble.

Jim: depends on what Ina reports back. If that Berg paper releases the results of a new large-population study with VL measured to <10, which it seems to,  then VL in the 10-50 range will become predictive of outcome. Up to now, to the best of my knowledge there hasn't been any data on which to base interpretation of a VL < 50.   Even with that new data, a VL in the 2-10 range will be uninformative until studies track the outcome of patients who manifest in that range. Then presumably it's on to the PBMC and real-time PCR techniques.. Basically my point is that a measurement is only meaningful when you can compare it with a distribution of outcomes (and BTW I'll make that a jelly-filled donut).
Avatar universal
Now that my metabolic syndrome has worsened from the treatment drugs, would it be an imposition if you baked up a lower carb donut? I'll bring the coffee and Ina can just bring herself for being so kind to translate from the motherland. Speaking of tea, have you tried "Roobios". Nice sweet flavor without caffeine. Not  even technically a tea but from an African Bush. A blend goes under the name "Red Bush Tea" at Starbucks. Tastes good straight or with milk or soy milk. I think first heard about Roobios here from TallBlonde and Rocker. Remember Rocker? Do miss that guy. Speaking of which -- and back to the real teas - a recent study suggested that putting milk in tea undues all the good stuff teas do. Possibly why heart disease is less in Japan than England. You really make donuts? I'm impressed.

-- Jim
Avatar universal
The only studies I see so far are studies for geno 1 slow responders...48 weeks versus 72 weeks...referenced 10-12...and all they said was 4 randomised studies were done.

Geno 2&3 has study references, that's tomorrow, or later.

Willing...(Abb 2 should have said Abb 2 and 3)
Abb stands for picture.

Ina
Avatar universal
For those pt's that are slow responders, but negative to <10/IU by 24 weeks, the extension from 48 weeks to 72 weeks, can benefit them significantly, (Abb 7).

Ina
Avatar universal
It's 3AM, I keep getting after thoughts.
I think you are correct, some geno 1, provided they fit the criteria of low load, and minimal fibrosis, may walk away doing 18-24 weeks if they are RVR. The 4 week trial you suggested is a good idea for some....now we only have to find the doctors to play along, and the insurance companies to pick up the tab for constant testing.
I think Susan would fit the bill for a trial run. She could potentially walk away with 18 weeks of tx.
Hahaha, she won't like it that I even suggested tx.
Forgive me Susan.

Ina
Avatar universal
Here is a summary of the German study.
We had discussions along these lines last year when goofy was trying to determine his EOT.

They expect protease inhibitors to change the landscape, but don't expect them to be available for another 3-4 years.

They say RVR trumps everything, followed by the all important viral load going into tx.
This applies to all geno types.

The threshold what determines high or low load has been lowered to 400.000.The lower the viral load, the greater the chance of SVR, (Abb 5).

A RVR, having started tx with a high load, has a greater chance of relapse.

Fibrosis stage must also taken into account when recommending shorter therapy.

Table 1 on page 12 at the left bottom, are geno 1, tx for 48 weeks, tested with TMA down to 10, and had a low viral at start of tx.
It simply says RVR's were over tx,
EVR's were correctly tx,
and LVR's (slow responders) were under tx.
Nonresponders need to tx longer and stronger, but no guidelines are in place as of yet. Approx. 20% of geno 1 don't respond, and approx 5% of geno 2&3 don't respond.

RVR is defined as viral load <10/IU by week 4, and can safely tx for 24 weeks, (Abb 6).
EVR is defined as viral load >10/IU by week 4, but <10/IU by week 12, and needs to tx for 48 weeks.
LVR (slow response) is defined as viral load >10/IU by week 10-12, but <10/IU by week 24, and needs to extend to 72 weeks,(Abb 1 page 12).

Even geno 1 that have met all criteria, RVR, low viral load, have been tx for 18 weeks, and achieved SVR 95% of the time.

Let's not forget they are Europeans, who have higher SVR rates period.

Willing look at page 13...Was heisst "HCV-RNA negative"?
What means HCV-RNA negative?
Standard practice used to be PCR's down to 50/IU . In retrospect, after the more sensitive TMA's down to 10/IU had been introduced, they saw on these retrospective studies, that a significant number of pt's over the entire tx period had a low level of viremia (Abb 2). They presume that many pt's were called relapsers, while in reality they had never achieved undetected.

Pt's with small viremia by week 4, defined as <50/IU, but >10IU have a high relapse rate and should not shorten tx, but tx for 48 weeks.

There is more to say about Geno 2&3 and riba dosing.
I try to do that tomoorow.
If there are any questions, point me to the page and paragraph, and hopefully I can clarify.

Ina

Avatar universal
Ina : many thanks for poring over all this! It seems to an informed and sharpened tx algorithm - an interesting counterpoint to the one-size fits all SOC. The importance of rapid RVR strikes rings true from observations on this board - and argues for making the tx decision only after you know whether you're part of that elite club.  I'm on my way to the airport for a trip and won't get a chance to look at this for a while, but (1) I would bet there's an English version, possibly on one of the CME sites like medscpe (2) it still isn't clear to me how much new <10 data is being released here. The original TMA papers were based in small counts (~20 as I recall). Berg's own earlier paper on the importance of VL at 12 was based on <50. I think it's important to understand whether we now have data that sheds more light  on the outcome odds of those with low-level VL.  Being clear with a high-sensitivity test at (4,8,12) has always been and continues to be good news. However up to now there hasn't been much guidance on how bad things look if you're not clear.  Specifically,  what do yor SVR odds look like if you choose to continue notwithstanding  low-level VL at 8 or 12? Anyway, thanks again for your analysis - I'll try to dig into this  a bit more when I get back.

This paper is a good example of what can be done by just collecting and analyzing "current" tx data. Even more could be done by releasing tx data to open analysis - something I believe patients should *DEMAND* when they sign consent forms for clinical trials (we're the damm lab rats after all; we should  ensure our data is available to all  instead of locked up to protect some drug company's stock price or academic lab's competitive edge).  It's always irritated  that tx analyses like Drusano's and Shiffmann's tend to be based on old/stale data...

Jim: thanks for that tea pointer - I've gotten that African bush tea before but had no idea Starbucks had it. However, I have to confess my fantasies of  carnal knowledge of a donut are just that - if I actually ate one it would take me a week to recover...
Avatar universal
Bill, hope you check back in here.  Excellent stuff.  I have treid a couple of times to email you but it always gets returned.  Try to contact me at my screenname at aoldotcom and maybe that will work.

Thank you all for such an enlightening discussion, and especially to Ina.  A lot of work went into the reading itself and the treansation is super.  All my college German flew the coop.
frijole
Avatar universal
Willing, I know you are gone on a trip, but I still like to answer.
I know earlier Berg papers used PCR's down to 50I/U, but in this paper all references are down to 10/IU, at least this is how I read it, and the lady that provided the link in the first place, ZAAZA something, read it with her broken German the same.
Berg wrote that further studies are needed indeed.
Under Abb 3 he said, that those were his own observations, meaning that a significant number of pt's who had been presumed neg with PCR down to 50/IU, were the entire length of tx really low level pos.

He said that random studies have shown that EVR's neg with a 10/IU test, have a 80% chance of SVR...in Europe of course.
They also have shown the benefits of LVR's to extend to 72 weeks. Abb 7 compares SVR rates 72 weeks vs 48 weeks.

I wish I could explain each picture, but it just takes me too long.

I want to write quickly about geno 2,3 in case somebody comes along and reads.
SVR for geno 2 and 3 depends just like geno 1 on the initial viral drop.
They did 4 random studies, with 700 pt's total.
All RVR's had gotten against recommendations a higher Riba dose, weight adjusted, and tx was not compromised by 12 or 16 week duration. SVR rate was approx. 80%.
Without RVR the relapse rate was up 50%, even though riba was dose adjusted, and pt's were tx for 24 weeks.
Weight based Riba, approx 12mg/kg is recommended for geno 2/3 as well.

There is more to say about Geno 2/3, but the thread is old, and I am not sure if anybody is reading.

Thanks Kathy, if you or bill have any questions, let me know.
I hope somebody can dig this study up in English.
It sure is a job putting it in writing. On the phone I could explain it in a few minutes.


Ina


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