12 week PCR and Genotype 1A

[Mongo]

So,

I swapped correspondence with our friends in Great Britain tonight.  They, and others, are STRONGLY encouraging me to push for an extension in Tx. from my current 48 weeks to 72 weeks.  They all seemed to echo the same mind-set; if you are a 1A, and didn't make "undie" by week 12 PCR, than medical professionals are more & more looking to extend treatment.

I've got my opinions on the notion, and would like to hear from anyone/everyone who may have some data for either side of the argument.

Before going on, let me say that the idea of extending this highly palatable cocktail of dragon juice and "Chipped Riba on Toast" is too emotionally stirring to describe.  The mere thought of it really razzes my berries, if you know what I mean


I am curious if our "Gold Standard of Care" differs from our fellow heppers on the far side of the Atlantic...


Thanks Kindly,


Mongo

[willy]

I would strongly suggest looking into Alinia (NTZ) and add that to your treatment.  It's cheap, it seems to add efficacy to SOC, it is considered safe and could tip the scales if you are hovering at the threshold of staying clear.  Seems like I also read that a cholesterol drug has also found to be offering some additional encouraging news. 
http://www.hcvanonymous.com/SMF/index.php?topic=6754.0

I haven't had a chance to read up on the news from EASL but I would guess that there could soon be some reviews and summaries from that conference.  I am less keen about extending; I say throw more wood on the fire now!!!!! 

Willy

[MissyMouse]

Kerry,

I agree with Willy on the Alinia.  I had every intention of asking for it when I went to Shands.  However, when I saw how difficult it was going to be just to get back on treatment I decided not to "push the envelope".  Unfortunately I'm not eligible for any clinical trials because of my history of Leukemia so I knew better than to try to get in to an Alinia trial.

As far as extending ... my opinion (and we all know what is said about those  ).  If you are given the chance to extend and you are physically capable of extending ... do it.  Even though I had over a 2 log drop at week 12 my first round of treatment, I was not quite clear ... did the 48 and of course relapsed.  Dr. David Nelson at Shands at the University of Florida (one of the best hepatologists in the country) told me that had I gone 72 weeks the first time around I probably would have gotten SVR.    So instead of a better shot at SVR ... here I am doing back to back treatments with only a 10% to 15% chance at SVR.  If I had gone 72 weeks the first time and still relapsed I would not have made the decision to try to treat again unless they offered me Infergen.  Unfortunately I'm not a candidate for Infergen because of my RA. 

Just my couple of pennies worth.   

Mouse

[Mongo]

Willy & Missy,

Thank you both for the positive feedback.  This is the kind of data I need to take with me for my May GI appointment, as well as for help in my decision making...


Thanks to you both!!!


Kerry

[RedRodeo]

Hey Kerry,
     I was wondering about that. When your Md said well thATs close enough to call undie. But 72 wks? I really think 48 wks will be enough. This is some very potent medication and has as you know bunches of severe s/es. Since you weren't undi I would look into
Alinia.
     Missy, why are your chances of a SVR so low this time? I don't understand.
     I've got to contact that site about free neupogen and procrit.
     I don't expect a SVR. Its like doing the same thing over and over again expecting different results.
     
     Take care you guys,
      Chris

[MissyMouse]

Chris,

Once a geno 1 relapses the chances of them responding to interferon/riba decrease substantially.  This is even more true the more advanced the liver disease. 


Mouse

[RedRodeo]

Missy,

     Thats gotta be true for other genotypes then. Its worth a shot, but I have doubted the wisdom of doing this stuff multiple times. So where did you hear this about retreating successes.
      Chris

[MissyMouse]

Hey Chris,

This is stuff that I learned from Shands when I went to get back on treatment. 
 
Mouse

[RedRodeo]

Well, is that true for other genotypes?
Chris

[Coujam]

Kerry -

I would extend to 72 weeks and if your present Dr won't get it approved get a second opinion.  I did 48 wks and did have a 2 log drop at 12 wks but relapsed at my six month followup.  The Dr I treated with said that 48 wks was it and if it didn't work there were no more options.  I was very very nauseated and listened to what he said because I didn't want to extend tx BUT now I wish I would have gone to see my present Dr at that point because he recommends 72 weeks for Geno type 1's.  Now, I have to start all over again and it's a challenge to even think about.  He is recommending infergen but I have to work so I am just not sure how it will go in 2010, maybe there will be a new tx.

So, if I had it to do over again, I would opt for extending the present tx.  I hope you can find a dr to get it for you if you decide to go for it. 

Hope this helps,
Coujam

[Lee]

Kerry,

All I can say is you know where to go for the answer. 



Blessings dear friend....

Lee

[willy]

Well, is that true for other genotypes?
Chris

Chris, generally speaking, yes.  It's true for all genotypes.  As in many things a simple direct answer may not really be the most accurate way of describing it however.  To some extent immune response and resistant HCV strains are not well understood and so to make a simple and sweeping statement may be what we want but it may not be absolutely accurate.  It may be a few years yet that the question can be answered more definatively.

Generally speaking since the virus reproduces and mutates very rapidly any virii that aren't killed tend to create some more resistant offspring.  This is why some people experience breakthru or rebound.  What they don't positively understand is if the virii are truely resistant to interferon or whether it is a deficiency in the immune system, such as failing to recognise the virii.  They also don't know that even IF there are treatment resistant virii produced......as to whether over time after stopping treatment they tend to drift back towards the standard HCV strains.  IF SO.... the so called resistant virii may not be with you forever; they may revert back to the default standard strains.

Generally speaking using the exact same treatment the success rate tend to be in the single digits when one retreats.  There will be new more powerful treatments which will make it far more easy to clear even if one has failed in the past.  The Prove 3 Vertex trial results (for past treatment failures) will be made available to the FDA very soon (they are due this month) and we may even see an approved treatment for past treatment failures.  This is all pending (it also may not happen until the drug completes Phase 3 testing in 2 or so years) but we should have an answer perhaps in months or by the fall AASLD liver conference.

best,
Willy

[pete c]

KERRY

 All I can add to this wealth of  knowleage is  it has been my eperience in life  that  I have gotten more done getting on my knees and and saying Help me. In loveing fellowship  my friend .

                                                                        pete

[negative1]

Kerry, where have Pix and Jb been?
I have seen pix on some other sites but they were so active here at first now we never see them.....

Earl

[Mongo]

Kerry, where have Pix and Jb been?
I have seen pix on some other sites but they were so active here at first now we never see them.....

Earl

http://hepcforum.co.uk/phpBB3/index.php

I went there following a link from JB's blog I think...

I was looking a the the forum...it's newer and slightly more modern than ours...