Guiding myself

[Cyn621]

I haven't posted since Oct. 11 when I asked for advice about quitting incevik a few days early. I did end up quitting 5days early. I personally, just couldn't handle it. I have posted  a few times about issues with my doctor who was really not very supportive through this entire process (and sometimes clueless).  Right now, I'm worried about my viral load:  

At 4 weeks my HCV RNA IU/ml  was <43 and my HCV RNA ,QN, PCR was <1.63 log IU/ML.  My doctor told me at the time I was UND and called an early responder.  At 12 weeks, it was the same exact number.  He told me at the time, those numbers basically mean I'm undetectable. Today I read a post where someone said they were 43 and still not undectable and now I'm really worried if he knows what he is talking about.  Any advice?  Cyndi

[eureka254]

. o O (which would be more fun, chocolate covered ants, or chocolate covered aunts?)

[willbb]

D..
I am glad I am not the only one with "ant"bias"  

Altho...I have met others with "aunt" bias.....

[flcyclist]

Although I've never believed that ants have any bias, after being bitten by fire ants many times, I've come time dislike everything about them.  Therefore, I have ant bias.  Hate those little suckers :o)

[willbb]

Always happy to help with your point making....... lol

[Trish77]

"my spell check seems to work sorta like you interpretation comprehension at times.....just never know"

Thanks for making my point on knowledgeable people and biases.

Like you said...ruining of a good thread is silly.  Onwards and upwards.

[willbb]

Yes...the ruining of a good thread ..is always silly.....  cheers

[Trish77]

I would thank you for thanking me but then it smacks a bit of Laurel and Hardy.... :)  Cheers Will.

[willbb]

my spell check seems to work sorta like you interpretation comprehension at times.....just never know

[Trish77]

What kinda ants?  Ohh..any bias. :)    Got it..thanks.  :)

[willbb]

With all due respect, Will...
-----------------------------------------

Forgive me...I forgot to thank you for that....  

[Trish77]

"It's impossible to counsel less than maximum effort. "

That is a great way to put it....in fact, I agree with your whole post and no "Amend!" required but how about an Amen!  :)   I do agree there is support here for someone who has decided that they have to stop the treatment only I find it a challenge to make sure that gets through while at the same time counselling maximum effort.  I find it tough when someone is saying they can't take anymore and would it be okay if they quit.  People don't always get what they want to hear in that situation and it's unfortunate if that causes them to leave....I'm aware that's always the risk and it bothers me a lot when someone has come on asking certain questions and then you don't see them post anymore after that.  I always wonder if it was something that was said or the way it was said and worries me on some level.  

[willbb]

not sure  "ant bias"  possibly "any"

[willbb]

...this statement makes me nervous and perhaps I misunderstand your intent.
--------
- Correct   you misinterpret

..I always feel it is only credible to relay the study info..without ant bias

[Trish77]

willbb:  Judy..this is always why it is imperative to copy the studies and articles by those that really are knowledgeable."

With all due respect, Will...this statement makes me nervous and perhaps I misunderstand your intent.  A study is a study. It's not made more or less credible by the person posting it, the data remains the same.

As a person who tends to use a lot of words in a post, a lot of words and study references don't mean a hill of beans if they can baffle with bullsh!t or if they have a bias they want to push and twist data to do it.  I sure hope people are reading a posted study to see how it lines up rather than just taking someone's word for it.  More than once I've read a study after someone's comments and disagreed with their interpretation of the data and was glad I'd read it for myself.  Doesn't happen often but it has happened sometimes.

Who the knowledgeable people are is rather subjective and nobody is infallible here.  What we post is opinion a lot of times.  An educated or experienced opinion in many cases but it may not apply to all or may not be a good fit all the time.  Everyone has something to offer here and in the end, every person needs to test the advice or opinion given for themselves and take responsibility for it. to determine what is best for THEMSELVES, to read the data and try to understand it and to consult with their medical team.

[pooh55811]

I think sometimes we have to be quite assertive in order to obtain our hard copy lab reports. Normally I have no problem getting copies of my labs but the GI nurse was reluctant to give them to me. I don't know why except I think she just did not want to print them. She said it was due to confidentiality and release of information and that I would need to sign a release and then obtain the paper copies through medical records. Medical records said that the nurse could print the copies and that she just did not want to, LOL. Anyway, I was tenacious. Finally after Med. Records said she could print them, she had no more excuses why she could not print them. Now, every time I go to the office (weekely) the labs that were done that morning are already printed out and  ready for me to take home. So just keep asking for those hard copies.

[nygirl7]

Dee your medical records are YOUR Property - there is no reason they should not give them to you.  I have a copy of every single test that I had during/before/after treatment in a binder still to this day. I dont know why I keep it - hcv obsession I guess.

You go get them girl!!!!!!!!!!!!!!!!!!!!!!!!!!

[Dee1956]

Thank you very much for every single post, it all teaches.  I have learned from every single one of you and I want to thank you from the bottom of my heart
While I have been "told" I was UND at 4,8,9 or 10,12 it is frustrating when I ask for the blood work that they do not give me the paperwork.  I can see it on their computer but they do not print that part out for me, why not?  Are they afraid of my questions?  I am getting it the next time or not leaving the doctors office.
I seem to get more when I am not so polite.
I hope you all have Happy Holidays
I will not be decorating but will be celebrating in spirit with my riba and Peg cocktail
love
dee
Love
Dee1956

[nygirl7]

It's impossible to counsel less than maximum effort. "

With this the first generation PI non-trial folks it will be interesting to see what the SVR/Relapse rates are after discontinuation.  There is a reason that some of us say 'stay the course' after you've had good friends relapse that did every single thing they could possible do in this world and followed every single dose and piece of advice - only to fail...........it gets hard to say "ah just do what you want".

Double edged sword, nobody is being a hard case it's just VERY hard to watch those you love not win the battle the first time out of the gate.  We will see what the rates are and how important strict adherence really is in a few months or so.

Until then it's up to your own sense of comfortablity (if there is such a word). Some risks pay off and some do not. Please always keep that in mind.

[flcyclist]

So I take it that that 4 week result shows the virus was still present (detectable) but the virus number could not be counted and could be anywhere from 7 to 42 IU/ml.
-------------------------------------------------------------------------------------------
Pooh,
I interpret these results the same as you based on the following information.

Based on the COBAS AmpliPrep/COBAS TaqMan HCV Test used for this Quest test the overall limit of detection (LOD) for genotype 1 was determined to be 7.1 IU/mL.

see table about 2/3 down page:
http://www.mayomedicallaboratories.com/test-catalog/print.php?unit_code=83142

[pooh55811]

Yes, my 4 week lab said it was detectable but under 43.

Yes, I was undetctable at 8 weeks.

I agree that the comfort level would be improved if the labs did the most sensitive and accurate tests available.

[frijole]

pooh
I think you are reading the test right.  Your test did have the wording "DETECTABLE" at the 4-week test, correct?  I think they are all using the same test  -- the "COBAS AmpliPrep/COBAS TaqMan HCV Test (Roche Molecular Systems Inc.)" but that Quest does not do the second part that test to determine if there is nonquantifiable virus under 43.  

It sounds like you were Undetected at week 8

In answer to your question, how low is enough to call UND?  I think the lower the test can detect, even if it can't quantify, the more comfort level we have.  I don't think 50 or 43 give much comfort level UNLESS they can detect, but just can't count the virus as low as 7 -- .  7 (this test) 5 (Quest heptimax) and 2 (labcorp Quantasure) should allow you to believe you are nondetectable.  

The quantasure is expensive.  So far, my insurance company has not had a problem with it but if they refused to pay I would go back to the HCV RNA RT

[Karl62]

Hi Cyn,
I myself had to stop treatment. I was on 3x with Incivek with mild side effercts then at week 9 started breaking out and at weeks end of the 11th week the Doc took me off on Incivek. At weeks end 13 he had me stop at drugs, he called me a 1%. He stated that since i was und at weeks 4,8, and12 i should stay und but i have my next draw in Feb.if i clear GREAT, if not i'll have to wait for a new drug. It's such a drag since i was more than half way thru it but my body couldn't take it anymore. So your not alone.

Karl62

[hcvJames]

Sorry Cyn, the last was directed to working dog

[hrsepwrguy]

As far as knowing the virus is 100% no but you can request a test that has a LOD of 2 IU/ml but that is the lowest test currently available