jmjm530 all-relapsers-use for other posts please

Hi everyone, I haven't posted for while but I have been reading some.

Sorry the thread was closed on 4-10, you posted "While some will relapse after being non-detectible at six months post treatment, from what I've read it's only around 1 or maybe 2 per cent."

My husband has tx'ed 2 times. He is 3a. First relapse was within 1 month after 24/24. Second relapse was not until 7 months post tx 48/48 also with heptimax. He was clear both times at 4 weeks into tx and all the way through.

He tested at 1, 4 and 7 months post tx and was clear at 1 and 4 months with heptimax and relapsed at 7 month test. He did peg and 1700 daily riba both times. Never missed a dose.

His only option at this point is Infergen or wait and see. He has been off all meds for 16 months and still has some tx sx.

I guess my point is if you are in the "ONLY 1 or maybe 2 percent" that relapses late after completing tx it sucks but it does happen.

[mikesimon]

Here's a quote from a Medscape article located at:
http://www.medscape.com/viewarticle/528266_1

"When the main objective of the treatment is viral eradication, the study of viral kinetics during the first twelve weeks of Peg-IFN alpha-2a plus ribavirin treatment showed that week 2 tend to be the best time point for predicting sustained virological response. The early identification of patients with no SVR may lead for proposing an interruption of therapy for avoiding side effects and additional costs, or an early change of therapy.[24] This observation, after being validated on a larger cohort of genotype 1 patients, should have an impact in clinical routine in order to optimise antiviral therapy[25]."

The article discusses a study with a rather small cohort. It concludes that 2 weeks is the most accurate time to predict SVR based of viral kinetics. It's worth the time.
Mike

[jmjm530]

last sentence in my last post should have read:

I would guess that late in treatment the odds of being tma positive, while being under <50 IU/ml are quite low.

[Mister beagle bailey]

Will see how I feel, would like to push it off as long as I can so the new blood will take me to the end of tx.  The last time I laid there, watched Tv, it took 7-8 hours for 2 units of blood.  I'm just glad I got the red light to go when ever I feel I need it.  Thanks for asking.  How are you doing today?  Did you see my last post to you yesterday?

Beagle

[Mister beagle bailey]

Yes, this is what my Dr. believes that the Heptimax is some what like the older test that gave false positives and false negatives and they used it for years until the lab sent out letters to all Drs. that used the test to retest their patients.  Some of the patients had to do meds again because of false negatives results.  That is why they took the old test off the market and why he will not use the hepimax test.  There is something in the Heptimax test he saw that he doesn't like.

Beagle

[FlGuy]

Haven't been to Ashley yet. I think we'll ditch the kids and go this weekend - sounds too good for kids.  The downtown area is neat.  There's a performing arts theater that wife takes daughter to and the paint store, where I spend a lot of time and money,  is right there are 'confusion corner'.  Will find out the history.

[jmjm530]

Thanks for the clarification and if you have a chance to speak to him in the future, I'd be curious exactly what he doesn't like about the Hepitmax.

Still, the point I made earlier, is that even if the TMA portion of Heptimax is inaccurate, the first part of the test -- the PCR part -- should be accurate. That gives you viral load down to 50 IU/ml, so in some sense it's a check on the TMA part.

-- Jim

[mikesimon]

I had you in mind when I posted the article and I am very happy that you had the 2 wk. positive results. I think you have very good reason for optimism Jim and, again, I wish you the best.
As for BB's doctor's problem with the Heptimax: I would question the doctor before than I would question the test. My transplant clinic has used the Heptimax since 2002 or 2003 and they have a lot of hep c patients. I have had at least 15 Heptimax tests myself and the results have never been questionable. If the hepatologists and transplant surgeons are comfortable with Heptimax I assume it's extremely reliable. These guys are very serious about test results. Mike

[Mister beagle bailey]

I don't knowif he will ever tell me what he doesn't like.  You know how Drs. are, they don't like to go agaist others in their field.  However, my next PCR will have a second part to it but with this brain fog I can't remember the name of the second part of the test but it's not the TMA that I'm sure of.

Beagle

[jmjm530]

Tina said: He tested at 1, 4 and 7 months
-----------------------------------------
You're making an assumption he relapsed at 7 months post treatment. He may have relapsed at five months but you only picked it up on the seven month test. The definition of SVR (sustained viral response) is being non-detectible six-months after stopping treatment. Depending on who you read, it is around 98-99% reliable.

There have been a number of posts lately inferring that a lot of people are relapsing after six-months post treatment. On closer examination, I have yet to see one where the facts bear this out. That doesn't mean some folks don't relapse after six-months--but again it's only 1-2 per cent, according to the folks who are supposed to know these things. After being clear 1-year post treatment, it starts to approach 100%.

Also keep in mind that lab error (false negatives and positives) as well as re-infection can account for some relapsers.

-- Jim

[tina-b]

Your right, he could have relapsed at 5 months but we will never know.

I didn't just fall off the turnip truck, I know what SVR means.

I don't think he had false negative heptimax results at 1 and 4 months so I can only assume it was really negative or to low to count on those tests.

As for re-infection, it is the same geno he had when he first found out he has it and I tested negative so he didn't get it form me and his lifestyle is go to work, come home, go to work, come home, go to work, come home.........I think you get the picture.

You said

[jmjm530]

Thanks for the study Mike. Another article that suggest RVR appears
to be the single most important predictor of SVR, trumping pre-treatment predictive factors.

I was non-detectible at week 2 (<600 IU/ml) which was over a 3-log drop from pre-tx baseline (1.5 million). Therefore, I'm hoping this study is correct!!!

BTW, can't put my finger on it, but an earlier study suggested that the 24-hour PCR was the most accurate predictor for SVR. Unfortunately, insurance issues and pig-headed doctors will keep many from taking advantage of these findings.

-- Jim

[Mister beagle bailey]

This may be why my dr. will not do the Heptimax test.  There is no way to know when he relaped because the test may have given a false negative reading while still txing at any given point.

I have the green light to go to the hospital when ever I feel my HGB dropping more and they will do the transfusion.  Glad that  part is over, now moving forward.

Thanks to you all for helping me decide and for being there for me.  :)

Beagle

[tina-b]

This is a very interesting article in Popular Science


http://www.popsci.com/popsci/medicine/4cea80b13832a010vgnvcm1000004eecbccdrcrd.html

[jmjm530]

Tina says: I don't know, I guess based on some of your previous post, I feel like you are trivializing relapsing.
-----------------------------------------------------------

I must apologize if I've been giving that impression. And even if the relapse rate at six-months post treatment is only 1-2%, for those people it is tragic.

Look, I'm in the same boat as everyone else. I just finished treatment and relapse is a possiblity for me as well. Believe me, I don't take this as a triviality at all -- I worry about relapse every day and will to one degree or another until my post treatment six month test.

The reason I probably seemed a bit adamant in my post, is because lately some people have been suggesting that there have been "a lot" of people recently relapsing here after being non-detectible six months post treatment. At closer inspection, this isn't true and to my knowledge none of the people referenced relapsed after six-months post treatment.

Relapse is terrible no matter what the per cent, but I just don't want people to come away with the impression that "a lot" of people are relapsing after six-months post treatment. We all have a lot to worry about here, and it's important that everything be put in context and that information be as accurate as possible.

All my best wishes to you and your husband. I hope future treatments are more successful.

-- Jim

[FlGuy]

So, when you gonna do it?  As I recall, it took several hours for you last time.  What is the process like? Lay down, read watch tv, sleep? In hospital room, out-patient clinic?  Take hgb readings during the process?  Actually, it seem like they should give you ared light, not a green one.

[jmjm530]

BB says:here is no way to know when he relaped because the test may have given a false negative reading while still txing at any given point.
---------------------------------------------
I always thought the problem with Heptimax was false positives on the TMA portion, not false negatives. Are you just making a supposition, or did your doctor tell you he had problems with false negatives?

The reason I question it, is because Heptimax is really two tests. First they run a traditional PCR with a sensitivity of 50 IU/ml. Only if the PCR is negative do they run the more sensitive (TMA) part.

Assuming then that there are no false negatives in the PCR portion, then any false negative in the TMA portion would mean the patient still had <50 IU/ml. I would guess that late in treatment the odds of being negative while being under <50 IU/ml are quite low.

-- Jim




I could understand a false negative on the TMA portion, but the PCR portion they run first (sensitivity <50 IU/ml))

Since Heptimax is really two tests the first being a traditional PCR with limit of <50 IU/ml -- then in t

[cuteus]

tina, I remember the struggles for you and hubby during his tx, it is so unfair he has to make that 2%! What more could he have done? Sometimes I wonder if the bug is not allowed to rebound by going as long as you can the first time, it might not become sort of "resistant" to further treatments. Your hubby is not Greg, is he?
He is the only person I know who was negative down to 50IU/ML in the 6 mo post tx test and positive at the 12 mo mark. It scared the heck out of me at that time, because I had just read negative by the same test at my 6 mo PCR. So, he became positive sometime after mo 6 and before mo 12. But if your hubby is that Greg, then, I remembered the stats incorrectly.
I hope he stays well for you and the kids.

[jmjm530]

Not to beat a dead horse, but I think it important to reinterate that Tina's husband never had a six-month post treatment PCR. He tested at 1, 4, and 7 months post treatment. That means he conceivably could have relapsed shortly after his 4 month PCR. Of course, this is no comfort to Tina or her husband, but it's not the same as relapsing after SVR (six months non-detectible post treatment). I only mention this again because folks have a lot to worry about when treating, and while relapsing after six months happens, statistically it's very low.

-- Jim

[GoofyDad]

<i>Sometimes I wonder if the bug is not allowed to rebound by going as long as you can the first time, it might not become sort of "resistant" to further treatments.</i>

What do you base this on? My reading so far suggests, as a whole, retreaters seem to have the same shot at SVR as tx niave. Non-responders are obviously a different situation.

[Bill1954]

Thanks for the link to the article by R. Gish. Interesting stuff there; I wonder why test specificity isn

[fishdoc]

2 week 4 week 8 week
28-Feb 3-Mar 7-Apr
5.31 4.09 3.2 WBC
2.19 1.31 1.17 NEU
2.51 2.37 1.72 LYM
4.7 4.75 4.28 RBC
14.6 14.8 13.5 HGB
138 145 137 PLT
30 26 24 ast
35 30 27 alt



Got my numbers,  I am almost disappointed I can't point to one and say AH HA!!  Thats why I'm too pooped to poop.. I mean pop... no maybe I mean poop...If its not blood chemistry, WHY are we so tired???

[can-do-man]

Swimming to much? Hep-c fatigue? Riba? Not sleeping enough? Yelling to much at your poor hubby?

Choose one or more.

[fishdoc]

You know, speaking of hats, if you two guys, (hoove been verra verra good to me) can figure a way to get me a mailing address, I'll send you a cool fish hat.......choice of camo or taupe..

[jmjm530]

Didn't mean to jump on you but people have been drawing so many false conclusions lately from other people's posts -- especially regarding relapse -- that I felt better be safe than sorry.

Part of the problem is that folks aren't reading the posts carefully enough, and part is in how the posts are written. They know what they mean, but the reader is often left confused or mislead.  I'm sure we've all been guilty of both at one time or another :)

I don't know anything about Greg's case, but it's possibly he's one of the unlucky 1%. However, equally plausible, is that there was some confusion over terminology or the way the conclusions were drawn. For example, going back to Tina's case, it's easy to draw the conclusion (not talking about you) that he relapsed after six months. But a careful reading shows he indeed could have relapsed after 4 month.  That's why a lot of doctors don't put much faith in anecdotal testimonials that significantly deviate from the norm, unless they can be confirmed by actual medical records.

-- Jim

[cuteus]

i AGREE ooops caps! jm I agree with you on the confusing posts sometimes we read. When people post they relapsed at 6 months, I always ask if they tested before that or not, as it is possible they relapsed way before.
The reason Greg's case remains in my head, is because after I asked all the correct questions, when he tested, how sensitive, etc., it became clear he was one of the unlucky ones, and I was so terrified, I asked for a 10 month PCR rather than waiting for the yr. In those days, i meant to re treat.
I think fear will remain with us for a long time until we are proven wrong. take for example the skin repair or liquid bandaid, even though I have been negative for over a yr now, and my reason tells me there is nothing in that liquid I can transmit, I would not use it on my daughter or anyone else. I guess there will always be a doubt, until I can PCR every tissue of my body for HCV.
stay well

[dyce]

Ha fishy , your results look good, I kinda figured you were pushing to hard. I know I can't go even a fraction as hard as I'm accustomed to. I'm used to workin all day , chasin coondogs all nite and now I have a hard time just walkin around at work. Ya got to lay that pitchfork down alittle more, just use it when really warrnted.

Dyce

[fishdoc]

Yeah, I keep thinking I need to take some time off, like today for example, but I have a friend having surgery, so I'm ferrying her mom around (two trips to town).  I keep worrying that I will feel worse later on, so I hate to use my leave, "just in case".  At least after next week, I can quit traveling, and raise chickens for a couple of months...

[Bill1954]

Just wondering if Beagle Bailey

[tina-b]

No my husband isn't Greg.  Doc put my husband in the 1-2% of relapsers. Doc said he doesn't know why he relapsed.

Back when I was first leaning about tx, I was always told that SVR was achieved at 1 year post tx without the virus, not 6 months.

When did 6 months clear post tx become SVR?

Thanks all!
Tina

[can-do-man]

Sorry about your hubby, i agree with you, when its you or a love one then that 1 or 2% don't mean squat.

If the 6 month is now the gold standard then why do they do the 1 year pcr?

Too Too many studys out there. When it comes down to it your either gonna be one of the lucky ones or not. Best of luck going forward to the both of you.

[jmjm530]

Tina,

In the 16 or so months I've read Hep C literature, SVR has always been defined as non-detectible for six months after treatment ends.
From the Cleaveland Clinic:

"Treatment outcomes for patients treated with interferon are classified into nonresponse, relapse, and sustained virologic response. A sustained virologic response (SVR) is defined as undetectable virus in the serum 6 months after treatment completion, which correlates well with long-term absence of virus"
Full article here: http://tinyurl.com/oxzrn

Cuteus,

You asked in another thread about current odds of SVR at different junctions post treatment. I've heard/read approx 90% if non-detectible 4 weeks post treatment, 98-99% 12 weeks post tx, 99% 24 weeks post tx, and close to 100% 1-year post treatment. I know you have a lot of respect for Dr. Cecil and his numbers are similar except lower for the 12-week. However, I think there has been a more recent study that shows that the 12-week correlates almost exactly to the 24-week. Here are two of his q&a's that cover this ground.
http://www.hcvinprison.org/forum_new/topic.asp?TOPIC_ID=192
http://www.hcvinprison.org/forum_new/topic.asp?TOPIC_ID=191

Bill,

Before we post specificity, first don't we have to know what it means. LOL. Anyway, I just checked my Quest Heptimax scorecard and didn't see it mentioned.

-- Jim

[jmjm530]

In regard to test "specificity", let me assume that it is more or less synonomous with accuracy and a 99% specificity means that 99 samples out of a hundred will be processed correctly.

According to this, as of 2004, specificity for Heptimax was not available. How reassuring :)

http://www.projectsinknowledge.com/Init/G/1665/1665-TxReporter.pdf

-- Jim

[Mister beagle bailey]

Tina I agree with can do and I just want to say I'm sorry about your hubby.  It's not easy to deal with when it's a love one.

Bill--  It could very well be that the Heptimax shows no specificity and that's what my dr doesn't like.  Then you have to ask your self, Why don't they have the specificity for Heptimax?  I don't know there seems to be more questions then answers.

Beagle

[cuteus]

hey jm, i did read that part of the post, my comment was in reference to Greg, not sure if he is Tina's husband. That time, over a yr ago, I specifically asked the wife what PCR he was given and that post did say that Greg was negative at the 6 month test, unlike Tina's who was positive before the 12 month post tx mark. Until Tina answers, or someone else remembers, Greg was negative at 6 month and positive at 12 month. It is the only case I have read here so far.

goof, no research or articles, just the awe that so many folks seem to treat, clear, and then relapse post tx, over and over. Makes you wonder if it would have been hit hard the first time, maybe the other txs would not have failed(which is an odd thing to say, since they would not have been needed). Just wondering if in some people, the bug becomes resistant and "clever" at hiding until is safe to come out. Then you get the ones that clear the second time around, almost as if the bug was weakened by the first try! Who knows?

[PKCO]

Hiya tina !

How much peg was hubby doing ?

"He did peg and 1700 daily riba both times"

1700 mg is very toxic and there are NO studies or trials to support taking such a toxic dose. 16 months post-tx and still has sides - possible connection ?

I'll never trust a doctor who owns his own pharmacy. Nor one that relies on the internet for his business. Has Michigan booted Cecil out yet ? I know they were trying to the last time I cared enough to follow the story. They booted him out of the VA clinic years ago in Louisville. For fun you might want to look up any peer-reviewed studies he has done. Or trials he has conducted under the auspices of the NIH, CDC, any teaching university,etc. In other words, a study that wasn't designed and conducted by him and his 'nurse" ?

I did notice that he was forced to remove his 'interpetation" of SP trial data he so arrogantly posted on his site.  Good, because it was ridiculous. I also noticed that the gov't put the clamps down on his "internet doctoring". That's good also.

And don't bother with the Infergen. The odds of that working given prior tx history is practically nil. Knowing Cecil he would have your hubby doing Infergen induction dosing which has been shown to be a failure for years, now. Maintenance dosing may be appropriate for your hubby if disease is advanced.

I acsertained from the posts that you like Cecil. I won't hold that against you if you won't hold my disdain for the quack against me.

Best regards,
PK

[jmjm530]

Interesting, disturbing and not particularly surprising are three thoughts that come to mind right away after reading the article.

In part it says:

"Specificity is the probability that a test is negative, given that the person does not have the disease.

Using AIDS as an example: assume for this example that both the specificity and sensitivity of the test for AIDS is 99%.

Given this, if you took an AIDS test and have a positive result, the test itself may only be 50% accurate!!!!

How can that be??? Well, it turns out that when you work with statistics you also have to take into account the incidence of something - how common it is - in the population at large."

Bill,

That helps explain "specificity" to some extent. So using the above example, it seems to mean that if a test has a 99% specificity, then 99% of people tested who do not have AIDS will test negative. In other words, there will be 1 per cent of false positives. But what about false negatives? Do you know how specificity relates to that?

As far as the "accuracy" issue as described above, I'm a bit confused as HCV also is not found in most of the population and I highly doubt if the accuracy of our tests are only around 50%. There also seems to be a contradition here, as the article first defines specificity in regard to a population of known negatives.

-- Jim

[tina-b]

Yes, he did 1,700 mg daily of riba and 5mcg (#5 on needle) both times. And yes, it is toxic.

I am sure the tx explains his recurring sides. Mostly the "restless legs" side is what he continues to experience.

You said, "I ascertained from the posts that you like Cecil"

I don't know how you can ascertain that from MY post, I never heard of the man.

My husband's doc is Dr. Bruce Bacon @SLU and yes I like him allot. He is very knowledgeable, informed, personably and accessible.

[Bill1954]

Thanks for taking the time to read that article...I

[Bill1954]

This isn