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Post Info TOPIC: well no 4week finding out if i am responding for me!!


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RE: well no 4week finding out if i am responding for me!!
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oh no Iisicat. I know u didn't mean that.. I have to keep telling myself I got to do this.. it is the rash thingy that is starting up really good that I am having a very hard time dealing with.. very hard time...  hmm  I am hoping it doesn't get real real real bad that they take me off..



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 



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That's a good link, Tig.  I sometimes think of it as an allele too although I'm not even sure if that is technically accurate.   If you don't have a strong science background, and I don't, this stuff can be challenging to understand.  It is almost like learning a new language.  smile



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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TazKat wrote:

i can't stop.. this is my last shot i will take. i can't do this again.. this stuff is brutal.. doc says she thinks it is doing its job because of the severe side effects.. i will have to tough it out. i will see if i see what u are talking about on my results dating back to 2013 when i started going to hepa. too tired too even fool with right now. fixing to leave work to see if i can get some damn relief for skin.. god i will be so glad when i achieve svr.  notice i said when not "if"  lol  peace out


No, I wasn't suggesting that you stop tx, if that is what you mean.  Not at all.  You are already well into it and the only way I would stop at this point is if it became literally too dangerous to continue (and the danger could not be mitigated). 

I was only suggesting that you might be able to get the insurance company to pay for viral load monitoring since you indicated you would like that.   Sometimes it is best to just keep going and not overthink it, I suppose.  



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.

Tig


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I found calling the IL28B a "genotype" confusing at first. I have always referred to the IL28B as a polymorphism, like the Q80K PM, to keep them separate in my own mind, it sort of helps anyway. At least when explaining it to others new to the discussion. People start by thinking that a genotype is to mean "1,2,3,4,5 or 6", as in, I have Genotype 1,2, etc.....  Once you start getting into all of that, you start asking your brain to understand things that are very complex. Isis does a good job of explaining it and it's best to try and keep it as simple to understand as possible. (Good luck with that, ha, ha) I found some info that helps to describe it in detail, yet keeps it understandable. I hope it helps. 

Tig

 

 IL28B Explained



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Tig

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i can't stop.. this is my last shot i will take. i can't do this again.. this stuff is brutal.. doc says she thinks it is doing its job because of the severe side effects.. i will have to tough it out. i will see if i see what u are talking about on my results dating back to 2013 when i started going to hepa. too tired too even fool with right now. fixing to leave work to see if i can get some damn relief for skin.. god i will be so glad when i achieve svr.  notice i said when not "if"  lol  peace out



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 



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P.S.  The only issue I am having some trouble with is that I don't know whether testing viral loads during tx on the sovaldi/int/riba combo has any clinical value for predicting outcome;  it certainly did with the Incivek combo.  There must be some studies on this and I'll see what I can find.  

The argument to the insurance company in a nutshell is this:  Monitoring TazKat's viral load is essential to determining whether the potential benefits outweigh the risks of continuing interferon based therapy.  This is particularly critical in view of her history of side effects and unfavorable responses to interferon based therapies.  It is cost effective to monitor viral load to determine whether an adequate viral load objective is achieved and, thus, lessen the likelihood of re-treatment.  

Please note, TazKat,  that this is just an argument designed to get the insurance company to pay for viral load testing.  It doesn't mean you are seriously considering discontinuing tx.



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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TazKat wrote:

what is IL28B? i have had so many tests. but i can get to a copy of my last 2 labs. start date & last fridays.. it is an insurance thing. sucks sucks sucks..no


IL28B is a genotype that, once determined, is useful as an outcome predictor for Interferon based treatments.  The CC IL28B allele is the most favorable. The C/T is intermediate and the T/T is associated with the least favorable rapid virological response and SVR rates.  That is not to say that people who do not carry the CC genotype cannot achieve SVR, only that their odds are decreased.   It is determined by a blood test. You should be able to find out if you have had this test by calling your doctor's office. (I would also request a copy of any written reports they cite from just to be on the safe side--mistakes happen.)

It is now considered SOC to test for the IL28B genotype prior to initiating interferon based treatments when it will help the patient or doctor decide on the most appropriate treatment (which is always as long as interferon is being considered).

I assumed it was an insurance thing but your doctor may be able to get the insurance company to pay for viral load testing if he can persuade them it is necessary for monitoring treatment and continued treatment decisions.   That should not be a difficult argument to make, particularly in your case where you have an extensive interferon based tx history,  but the more information you have the better.   



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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what is IL28B? i have had so many tests. but i can get to a copy of my last 2 labs. start date & last fridays.. it is an insurance thing. sucks sucks sucks..no



__________________

TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 



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This kind of sucks and I am wondering if it is negotiable (most things are).  There are certainly some good arguments in favor of testing prior to the end of the treatment particularly with an Interferon/Riba based therapy.   

Does this triple therapy have the equivalent of a RVR?  Did you ever have an IL28b test, TazKat?  

 



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Diagnosed in 2011, Incivek triple in 2011, tx discontinued, Genotype 1a, CT, VL 7mill, cirrhosis dx in 2012, age 67, waiting for new DAAs.



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They only do it at 12 weeks. agony.. agony.. geez!! 



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 

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