Hope you two had a happy Holiday weekend!
As I've expressed before, I have some reservations about the whole EOT TMA/PCR thing, specifically the significant number of folks who are PCR positive and TMA negative at EOT. I wonder about the test population and what generation PCR's were used. It might be an accuracy issue as well as a sensitivity one. Also, I'd like to see more studies before making SVR preditions based on EOT TMA negative.
That said, these studies as well as others, do suggest the importance of sensitive TMA testing during treatment -- minimally at the junction the patient tests PCR negative. This give a lot of PCR neg/TMA positives the option to either change or abort treatment earlier based on lack of response.
-- Jim
No worries my brother. We did the Easter thing too. Good fun that stuff is. Be intersting to know what odds your doc would give at end of treatment.
I am glad someone else bookmarked those articles! When I first read the TMA efficacy at detecting positives labeled negative by PCR, I was 3 month post tx. TG for that or I would have freaked big time. I could not believe the results!
It does seem as if whole blood testing should be done more often at EOT, especially in slow responders, breakthroughs and re treaters. Some of the late relapsers might have actually been positive by TMA, and if they were considering re treatment, they could have started months prior to the 'positive' PCR. I believe there was a study on re treating those positive by TMA, almost immediately after those results were in and the tx did not have to be as long as starting from square one. There are so many abstracts and articles out there, and yet, many times you can't find anything that closely resembles your personal situation.
Although Greg's story will always stay with me, as a reality check, I have not read of anyone relapsing after one yr in this forum, so that marker is still in good standing with me.
Welcome to the looney bin with us. All I could do in the beginning was read read read read too. Then I had even MORE questions so I asked asked asked asked. I was so glad to have this site to turn to when I didn't understand WHAT I was reading!
The more knowledge we have the better armed we are to fight this stupid disease. So hang in there and don't get overwhelmed by all the info coming in to your brain.
During treatment the amount of info we are able to retain drops so significantly = brain fog means we need to read things five times LOL
Well, at least you have 2 yr olds looking for the Easter eggs, I hid the eggs and then remembered that there are no young kids here. Now I'm trying to remember where I hid them. It never ends.
Beagle
Don't think in anyway i was trying to be a smartass with you, Ive read it and read it and it still confuses me. But then again daytime and nightime confuses me. Hey you going to go hunt easter eggs sunday? I was but then i didn't need more embarassment having those little snotnose 2 year olds beating me to the eggs. Plus if i did make it to one, 2 0r 3 of them would prolly gang up on me and beat me to death. I ask but they said i couldn't bring my ballbat to defend myself.
Here is another one I found:
NGI QUATA SURE QUANTITATIVE as done by national Genetics.
But which out of all is better? Will try Rocker's site and see what they have to say. There appears to be a lot of pro's and con's connected to most.
Beagle
To clarify end of treatment response (ETR), I believe it's defined as successfully reaching the end of the prescribed course (48 or 24 weeks) with undetectable viral loads. Aribtrarily stopping early, say as soon as an undetectable VL was acheived, would not be considered ETR.
I certainly don't challenge your hepatologist - neither on his qualifications nor on his SVR figures. I wouldn't be so bold, even if I knew anything about how he arrived at his conclusions, which of course I do not.
Here's one possible explanation though. The abstracts I refered to (reposted here) discuss end-of-treatment response. I believe your doc was giving numbers for start of treatment. Assuming an overall SVR rate of 60% at start of treatment (across all genotypes) it could go something like this:
(1) Chances of SVR at start: 60%
(2) Chances once 12/24 wk milestones hit (< 50 PCR): 65%
(3) Chances at EOT (neg <50 PCR at and of prescribed tx): 75%
(4) Chances at EOT (neg TMA at end of prescribed tx): 85%
(5) Chances at 1 mo post (neg TMA at (2) and (4)): 95%
These are just illustrative numbers I'm tossing out. The real message for me is the jump between (3) and (4). From the abstracts I posted it appears that there is a material difference between being neg by TMA vs neg by < 50 PCR at EOT.
This one shows 12% who were neg by <50 PCR at EOT were pos by TMA. It shows a 14% rate relapse after being clear at EOT by TMA.
http://www.natap.org/2005/HCV/122805_04.htm
This says 7% who were neg at EOT by <50 PCR were positive by TMA
http://www.pubmedcentral.gov/articlerender.fcgi?artid=88249
Page 2 of this says 22% who were neg at EOT by PCR were positive by TMA:
http://www.haltctrial.org/haltc_sept2005.pdf
Here's one that says 36% who were neg at EOT by PCR were positive by TMA:
http://www.labnews.de/en/services/pdf/symp_07/id_nad_4.pdf
Where are you getting the appetite from? I would have a hard time getting that big of a breakfast down every morning. As it is eating is no longer pleasurable to me. Nothing but ice cream tastes any good. I've lost about 10-15 lbs. I literally have to force myself to eat. My doctor had me buy the Boost supplement drink. Oh well, whenever I finally get to stop treatment, it starts coming back on big time!
Susan
i know you will thats a lot of cootie killing for 8 weeks...those little boogers left over have long bit the dust. your 1a right im 1a had 15,000,000 was only tested at week 12 was undetectable its scary when you have a higher viral load but it just dont seem to matter if the tx is going to kill it all its gonna kill it, also how old are you i wonder because im 42 prob had the virus 21 years and i was 15,000,000 i wonder if the virus is easier to kill when it 20 yrs old verses 30 yrs old if the age of the virus matters how hard it is to kill????
I put in the search enegine your second web-site and it come's up Error. Could you post it again?
Beagle
This is a great site, there is everything on this site that has to do with Hep C.
Thank,
Beagle
I hear ya, your not the only one obsessed, I am too. Did you ever find what is the best PCR test for the end of treating?
Beagle
Did you already post your 12 week pcr i knew you were coming up on it?
I just wanted to say thank you for your healthy advice that you give i know i dont like what i hear sometimes, but believe it or not a little bit sticks in my mind and im trying new things.
I believe Quest's HCV RNA Quantitative bDNA (Bayer Versant)
is also FDA approved. Detection limit 615-7.57 million IU/ml.
Rocker--Read the article and find it amazing.
Jake & Jim-- I to add back in the fat while ago and see a BIG change to the way my bodt recats to riba.
Been busy doing reseach on these da*e PCR testing. at the end of treatment. There are so many Drs and clinics that disagree with many testing. What's becoming clearer is many have a financial agenda with the labs used.
Rocker the web page you gave us should have a page to go to for the most accurate EOT PCR, do you agree.
So far the only one I can find that is FDA approved is,
HCV NGI ULTRA QUAL TEST
DONE BY NATIONAL GENRTICS
BY LAB CORP
It also appears to be the only test used to check the country's blood supplies.
Beagle
Re: http://www.hivandhepatitis.com/hep_c/news/2006/041106_a.html
Wow, for obvious reasons I have a knee-jerk reaction to the thought of thalidomide being used as a therapeutic agent again. However, it appears as if the proper dosage and patient warnings are followed, there might be some clinical value here. Its use is now being investigated by the FDA for use in AIDS, tuberculosis, and certain cancers, as well as leprosy. Somehow it affects tumor necrosis factor values and aids in the reduction of inflammation.
I suppose that if we already endure ribavirin, a known teratogenic, why not bring in another heavy hitter, lol! Just makes me wonder if 20 years down the road people refer to us as
Jake says: bacon eggs potatoes etc have been added to my once healthy diet.
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And don't forget the butter on the toast. LOL. Sounds like my tx breakfast (except I had egg whites with the bacon :) )
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Just don't hit yourself over the head regarding the antacids, etc. It may not have had any effect at all on what appears to be very close to a two-log drop. If your heartburn becomes and issue, talk to your doctor about an H-2 inhibitor like Zantac 100, or a PPI like Nexium. Both shouldn't interfere with the riba. BTW the bacon n' egg fest should help with any weight loss issues you might be experiencing. It's about the only thing I miss about treatment and just might do an order today :)
-- Jim
Hi you doing tody jmjm.. thanks for the above sites. Wanted to tell you since the other day when i asked a question about my log drop and chances I have been reading reading reading reading. Im not sure If i should thank you or not .. lol lol
I had gotten my 12 week back last week in the middle of week 15.. slow ,slow slow,on the reports. took them 2 weeks 3 days to get me the info. Also I will be having all further bld work and pcr's or any other clinical test forwarded to me .. I thought i had almost a 3 log drop and it was not, just a 2 log drop, i had the numbers right , i just heard the nurse wrong i quess.. very very close but .. i was eating anti acids after every meal then taking my riba. thanks for that warning.. i was also getting up early in the morning and having a non sugar low fat cereal then taking the riba (no fat)),, along with antiacids.. Well thats changed also.. bacon eggs potatoes etc have been added to my once healthy diet.. last night (friday) i took shot 16/48 // i have an appointment with the hep Dr on apr 20th so im sure i will get answers regarding tx,, per the vl from 1.08mil to 14k ,, which as im sure you know isnt within the 2 log drop category ,, again but close,, i will remain optimistic here .. I relize now just how damn important knowing whats going on with my treatmentis now. I will be a knowledgeable patient and a part of the decision making because its become very obvious they (medical staff) dont have all the answers. thanks beagle ,friole , on a pretty poison,nygirl also.
jake
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