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Post Info TOPIC: UND to DETECTED to UND! ???


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RE: UND to DETECTED to UND! ???
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Mallani -  Hepimax is available throughout the US from Quest Diagnostics which has over 2,000 locations here.  I agree there is not a big difference between the tests.  But every little bit helps.  I only wish the test was 100% accurate.  Woudn't it be nice if we could all stop treatment as soon as we had our first "Undetected" test instead of hanging around for dozens of weeks more "just to be sure"?



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Geno 1B Relapser 2001. Started Incivek 12-16-11. 57 yr old male.  Last biopsy 2000 -stage 3 fibrosis. UND Wk4, 12, 18, 26.  Did 34 weeks.  Still UND at 12-wks post.



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Dear Brad, I cannot find the reference about Heptimax TMA picking up 12.5% of undetecteds. We do not have Heptimax in Australia. My lab. does the ?latest Roche Quantitative PCR, and goes down to 15 copies. However, we can only get 4 tests a year on Medicare. My doc. says the Qualitative PCR ( measuring down to 50) is good enough. I am not convinced as the difference between 5 and 50 copies seems significant. How many people in the States have access to Heptimax? Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Yep we need all the blood we can hang on to!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!



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My dr and the nurses have not been on the same page.  Because of that, I've gotten VLs done at Weeks 4, 8, 9, 10, 11.  So yesterday my dr said all Labs every 3 weeks only.  Nurse said weekly labs for CBC only and big labs every 4 weeks.  But everything was getting done weekly.  So now new schedule is everything gets checked every 3 weeks.  Dr told me I will become more anemic with labs weekly, lol.



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.



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Judy you are so right! Nothing can stand up against the Vic for too long--it sure is kicking my butt LOL! Sorry to hear that you are still plagued by the nasty taste. I just get it evey so often just to remind me how bad it is.

Your doctor is doing VL every week? I have only had them done about 3 times during tx--have not gotten the last results yet--it has been a couple of weeks--I am thinking no news is good news

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!



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Thanks, Brad.  I am going to think that way, because I don't see how anything can stay alive when it's being fought with Victrelis (lol).  It's my "firepower".  Never lets me forget it's there, fighting with that ferocious, firey aftertaste.  I'll never get used to it, and I hope the virus won't, either.



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.



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I had my dr appt today and he said it is Not done by Quest.  Kaiser has all of their own labs.  He said they use the same testing that was done in the trials for Vic & Incivek.  He told me not to worry; it is UND in my blood.  May 2 was UND, May 9 was <43, May 16 was UND and May 23 not back yet.  Dr said that on May 9 the test detected some tiny bit, less than 43 parts but that was not detected the following week.  He said it doesn't detect down to 7, only to 43.

Nurse could not get the last few results to print correctly, so attached here are 3 parts to include all the recent dates with results.



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.



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I'm still betting on UND.

Brad



-- Edited by krowdog on Friday 25th of May 2012 07:02:15 AM

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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)

jrc


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Judy S wrote:

You guys are awesome; I am constantly learning so much from you all. 

Jeremy, thank you.  I SO appreciate seeing others' results on paper because they are all a bit different, showing extra info.  Helpful!!  Mine reads about the same with the quantitation range, but none of mine say "Range of Detection" like yours, and show that 7 - 69 mil range.  I have never seen that. 

You're right, not much difference between 5 or 7 copies.  I wish I could see that detectection range on my lab result.

Today is my dr appt and I'm not leaving without the actual lab report for that May 9 lab which showed 43.  So far, I've just been told this over the phone.  Not <43, but 43 is what she said.  I'd like to see exactly how it is reported on paper.  Thank you so much for the vital info!!   : )


 

 

Show us a pic of it if you can.



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Geno 1 A Started Tx w/ Victrelis  8-3-11, Viral Load  21.2 Million,  Und Weeks 4 Through 28 ,End Of Tx 2-15-2012 !SVR



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You guys are awesome; I am constantly learning so much from you all. 

Jeremy, thank you.  I SO appreciate seeing others' results on paper because they are all a bit different, showing extra info.  Helpful!!  Mine reads about the same with the quantitation range, but none of mine say "Range of Detection" like yours, and show that 7 - 69 mil range.  I have never seen that. 

You're right, not much difference between 5 or 7 copies.  I wish I could see that detectection range on my lab result.

Today is my dr appt and I'm not leaving without the actual lab report for that May 9 lab which showed 43.  So far, I've just been told this over the phone.  Not <43, but 43 is what she said.  I'd like to see exactly how it is reported on paper.  Thank you so much for the vital info!!   : )



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.

jrc


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Here's my 2cents for whats its worth guys. If the test is the same as mine (most people use this) the <43 means detected but not quantifiable. This test can DETECT as low as 7 Copies but can only quantify 43. So if your test reads undetectable You are 6 copies or below. If <43 your are somewhere between 7 and 43.

 

Heptimax can detect 5 copies, While heptimax is indeed better 5 or 7 copies isnt really much difference.

 

Jeremy



-- Edited by jrc on Thursday 24th of May 2012 08:46:16 PM

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Geno 1 A Started Tx w/ Victrelis  8-3-11, Viral Load  21.2 Million,  Und Weeks 4 Through 28 ,End Of Tx 2-15-2012 !SVR

kr


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My UND are all from Heptimax .... 



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Awesome info, Brad!  Thank you!!!  That is exactly what I'm going to print and discuss with my dr.

Yes, that 12.5% number IS pretty big!  Considering the hell that most of us go through, and many of us must endure an entire year of it.  To think it may all be for nothing just kills me.

The nurse told me today that Kaiser does use Quest for the labs they can't do in-house.  I would like to get a HeptiMax TMA test before I finish this tx. 

Thanks again for that info; it is BIG news that we should all be aware of.  Sure changes the meaning of what I previously thought UND was.



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.



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Correction.  My level was 43 (not 46) on May 9.  UND again on May 16.

The test they use only measures  the virus from 43, up to 69 million.  So my 43 was right there, just where the test starts detecting. 

I put in a message to my dr to ask if the Hepti-max test is avail, being that it measures down to 5.

It's exactly what Sunrise just said.  We're only UND if the tests avail at the time don't find the virus.  In my case, it won't find less than 43.



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.



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Sorry, the info on the last link was hard to find.

Try:

http://www.questdiagnostics.com/hcp/topics/heptimax/heptimax.html

B

 



-- Edited by krowdog on Thursday 24th of May 2012 05:12:56 AM



-- Edited by krowdog on Thursday 24th of May 2012 05:44:03 AM

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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)



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Here might be a good reason to get the 2-part Heptimax, or other TMA test.  Although it doesn't change the outcome, it sure seems to improve the predictive value (actually, it COULD change outcome, since you'd know to possibly extend TX).   Quest Diagnostics uses this test.

From:   http://questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TH_HEPTIMAX.htm

"Although Labcorp and Quest claim comparable sensitivity for their HCV RNA tests, several studies showed that significant percentage of PCR negative patients turn out to be TMA positive. One recent study found that 12.5%(!) of patients who showed clear by PCR at end of treatment had detectible virus when measured by TMA. Naturally, nearly every one of those with detectible virus by TMA relapsed when treatment was withdrawn."

That 12.5% number is pretty big, and may help to explain some of the "relapses", which were really a failure to go UND. in the first place.

This was taken directly off my test result sheet:


"HEPTIMAX (R) HCV RNA (PCR) --
HEPTIMAX (R) HCV RNA (TMA) <5

Because the HCV RNA level was below
43 IU/mL using the Real-Time PCR method,
the sample was assayed using the
Transcription-Mediated Amplification(TMA)
method."


Good luck, Judy and everyone on this journey,


Brad


-- Edited by krowdog on Thursday 24th of May 2012 03:29:23 AM

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(Geno 1a, Incivek Triple Tx, 6 month post TX - 9/20/2012 = SVR!!!)



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I think the key here is that UNDETECTED simply means the amount of virus in our bloodstream is too low to measure, using the tests currently available.  First time I was treated (COMBO in 2001) the tests could not measure anything below 1,000 copies per milliliter.  Now they are far more accurate; Quest Lab's Hetimax test (the most sensitive) measures down to 5 copies per milliliter, a huge improvement.  So if you are less than 5 copies that is what the test will say: "<5".  It does not actually even say undetectable.  You may in fact have no virus in your system or there may simply be too little to measure in your bloodstream.  Do we ever get "cured"?  We can completely remove the virus from our systems, yes.  But that does not mean we are then 100% safe.  There still remains the some heightened risk of liver cancer, though this risk is greatly reduced by successful treatment.



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Geno 1B Relapser 2001. Started Incivek 12-16-11. 57 yr old male.  Last biopsy 2000 -stage 3 fibrosis. UND Wk4, 12, 18, 26.  Did 34 weeks.  Still UND at 12-wks post.



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Thanks you guys.  My best guess is that they still can't truly eradicate a virus, any virus, with 100% certainty.  They mutate.  I believe that's why we're not considered SVR until 6 months after tx is finished.  They must figure that if it hasn't replicated to a detectable level by then, they must have gotten it all.  Even after that, 1% relapse.



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.

kr


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Judy

I have been confused by my results which didn't go down quickly (15 or 16 weeks to get UND) and have stayed UND since then but I know there's always a chance of breakthrough.   I'm coming up on week 36 test in 2 weeks.  Highly confusing I agree - if I were in your shoes I'd be feeling exactly the same way and there is so little information around about specific cases like yours or taking a while to get UND like mine.   I believe that there's some scientific explanation that the doctors haven't been able to find yet because they haven't broken down HCV treatment people into the smallest groups needed to truly analzye why one person does this on tx and another does something else.    I know there's some genetic connection and probably a few things we don't understand also.  What I've been trying to tell myself is now is the time to spiritually keep saying to myself "banish those stupid viral strands from my body - I'm healthy - I'm taking good care of myself - I have the courage for this treatment and the virus is just energy and my mind is just energy and sometimes I think our mind's energy can be a big help in overcoming the body's energy" - just a thought and hopefully doesn't sound too crazy. Thinking about you - try not to obsess

Roberta



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was just talkin bout this very thing with someone today

curious too how if its und, how can it reverse.? and well, yeh its a bit confusing...

CAN IT COME BACK.. like after SVR....?

 



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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)



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I'm confused too! But I read some time ago that this little virus is hanging out all over the place, in all of our organs. It's just that they can measure its status in the liver. So I guess it's possible that the virus could be hiding just about anywhere waiting for an opportunity to emerge. I guess UND in the blood doesn't necessarily mean that it is completely gone...??? I don't know.  But it sure makes this jouney one hell of a gamble.

Judy, I sure hope it is an error with the test and you are, and remain, FREE of this virus!!!!

SVR for all!!!!



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Peace, Mark

1A, stage 2/3, TT, began TX with Incivo 1/31/12, Week 4 VL<15, week 7 UND, week 12 UND, week 18 UND!!! End of Tx July 31 VL UND!!!  I had to do 26 weeks total and was on half Riba and half Interferon for most of Tx. 12 week post Tx VL UND!




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Thank you, Dave!  I'm so confused, now, sheesh.

Brad, I saw that Steven became Detected at <12 after so much time with UND status.  Then went UND again.  And then it happened to me.  So what do you think?  That it was a false read?  I mean, there's no little strand of virus that stays with us, that can't be detected by testing, is there??  These tests can drive a person nuts.

Thank you for the info on the types of tests.  Mine says PCR.  I didn't know about the Hepti-max at all, but now I will ask my Dr about it.  Mine always says:  Hep C Virus RNA Viral Load PCR.  That gives my number.  Under that, it states:  HCV RNA, SER/PLAS, PCR and that gives a much smaller number.  I know it's serum plasma and that showed UND as well. 

It states the linear range for this assay is 43 - 69 million.  So does that mean if I'm under 43 I will always test UND?  That means that some virus can remain, to replicate, no?



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.



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Well then, you will be in my thoughts and prayers.  May you stay UND from here on out.



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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo



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I've been keeping all of my labs and radiology and any surgery records for past 20 years.  I'm pretty anal about it, lol.  I keep hard copies in a labeled folder in my file cabinet and always scan them into my computer so they're electronic, too.  Then I back them up on disk every few months.

I know what every single lab result is and fully understand it and been following all labs for couple of decades.  I've even charted All of my numbers for everything in Excel for years, lol.  THAT is why I was So upset that they didn't even tell me they did more Viral Load counts! 

I have Kaiser and they're avail online within a couple of hours after CBC, then the rest come in next few days with email notifications.  Some labs are not released (Kaiser's system) so I'm Constantly calling in to ask nurse to ask Dr to release my labs, so I can get them online.  Sometimes I drive out there for hard copies if they're slow.  They Know how I am and they know I'm a CMA so can read everything easily and they don't need to "hide" abnormal results from me; I know what I have.  Ugh, it's so upsetting; they know I stay very on top of All of my numbers.

Well, I am currently UND again.  Last Wed labs showed UND again.  The Wed before that was 46.  The Wed before that was UND.  Tomorrow I go for labs again; every Wed.  Now I'm all nervous!



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.



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Judy, do you have copies of your labs? Always get them; you'll want to be familiar enough to read them as well. If you have been UND up through week 8 and are now detected this is MAJOR NEWS. The fact that your nurse considers it minor bothers me. If you don't have copies of your lab, have your provider fax them all over to you. Verify for yourself what the the viral test says. (In CA you can have the lab send you results directly but only if your doctor writes it on the lab order. I started having them do that after my first few lab sessions so I don't have to wait for the doctor. I actually have them write CC: patient and then my fax number so I don't have to wait for the snail mail.) Let us know what you find out.

Best, Dave

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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo



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What is going on?  I went to UND somewhere between Weeks 4 and 8.  I happened to call my dr office today and found out they did Quantitative tests both on May 9th and 16th, along with the CBC, enzymes, etc.  I didn't know they did that; thought I was just getting Viral Load testing every 4 weeks.

Well......she told me that after my UND at Week 8 (May 2 labs), I went Back to Detected at 46 on May 9th!!  Then UND again on May 16th.

I asked why they didn't tell me this and she said because it's under borderline so not considered news.

Sooo......does anybody get Viral Loads done weekly?  Do our numbers jump around?  What exactly IS UND?  A few parts that may or may not register??  Is testing often faulty?  How many parts can the test detect?  Why do we relapse if we continuously test UND?  Where does it come from?  I'm so confused, now.  no



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.



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Hi Judy.

We just had someone on here test positive after being Und.  He retested, and was negative.  These tests sometimes give false reads, especially in the very low ranges.  Maybe that's why your doc ordered a second V/L just a week after the positive one.

Also, find out which test they are using.  The PCR is a standard type, but I was fortunate enough to get the Hepti-max.  It is a 2-part test, using  PCR down to about 50 units  then a TMI type test that is good down to 5.

If I was a betting man, I'd put my money on you being UND.

Brad



-- Edited by krowdog on Wednesday 23rd of May 2012 04:49:08 AM

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