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Avatar universal

PCR testing

I keep going round and round with my doc as to the sensitivity of the PCR's he is having run on me. The 4 week one was <50. I asked for him to run a more sensitive test (down to <5) and even mentioned the heptimax test. He still claims that the <50 test is fine and as long as my results are <50 I am UND.
Are there any articles on the web stating that a more sensitive test should be run that I can bring to the doc? I will be having my 12 week Pcr shortly.
Thanks:
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Avatar universal
I can only be offended by people that mean something to me.

I care less about you, your posts, your thoughts about PCR testing, or anything else for that matter.
I wish you health and SVR, I wish that for everybody, otherwise you can go where the sun does not shine.

Ina
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Avatar universal
You said in "C8" above to Kalio in regard to her comments "...You make these kinds of statements as if they have been proven through unassailable studies and that what you say is absolutely true. If you have support for that absolutism I would like to see it. It is not as simple as you try to make it..."

That was the most forceful statement in this entire thread regarding the issue, and I personally would not have phrased/expanded it as you did, but I do happen to agree.

As far as I'm concerned, and based on the studies presented, I see no reason to change that statement based on the argument that your case is special because you've had a transplant. These tests are important for all of us, as has already been discussed.

So again, I'm surprised that you're taking such issue with some of my statments and possibly others. Yes, we all want the same thing, but it's important as you have said in the past, to acknowledge the facts as they are, so other reading will not be swayed in the wrong direction.

I don't want to pick a fight with you because I have too much respect and admiration, and hopefully you won't see this as such. But once the can of worms is opened, it's sometimes better to see it through. Well, I've seen it through on my end as much as I care to, so please have the last word if you wish and if you have the time considering all the tax stuff.

Be well,

-- Jim
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Avatar universal
I posted above, but what's the deal between your hemo and liver doctor? A two doctor approach works with some but they are supposed to agree or delegate responsibilities I would imagine. You say your hemo will go with transfusion at a certain point but your doc will reduce dose. So who do you go with? What's the plan here :)

-- Jim
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Avatar universal
Thanks Jim.
Hope you can comment on my latest post subject "red blood cells".
Seems like there is always another shoe falling with this disease.
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Avatar universal
Sorry about airing the dirty laundry but feelings often run high, especially when different doctors treat under use different approaches. We all like to think that our doctors are giving us the best care --  and like you say, compared to other countries we really are. As mentioned, you're half way through anyway, so a lot of this is academic unless your plan was to treat immediately upon relapse, which isn't necessarily the best thing to do anyway -- but why get into another controversial topic :) Do wish you the very best with what looks like an SVR in the making, and if you do end up showing the doctor some of the study papers, do let us know if it made any difference.

Be well,

Jim
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Avatar universal
Sorry if I opened a can of worms. Just shows that folks have different opinions. If I new before starting tx that my doc would not do the most sensitive tests available I would have gone to another doc. I thought I covered all the bases: 4week PCR, Rescue drugs, weight based riba. weekly cbc.
I am at the point now that there is no turning back. Next week will be 1/2 way so it is what it is. I will try the study letter out on my doc and see what he says. My PCP does not want to get involved. His words were "It's up to your hep doc".
I am still lucky as in other countries a lot don't get a pcr until 12 weeks or until they finish.

Thanks Again
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Avatar universal
That's the way I felt and feel. I thought Kalio tempered her statement following that post or backed away, if you will, but then she seemed to get testy or defensive and I want to attribute that to ribavirin because I believe that at the root she is a good person and wants what is best for us all. She and I have had major differences before and both of us got a little nasty and I would prefer not to get to that place again. So I am looking for the best in everyone but I can get very mean easily and I'm trying hard not to let that happen. And, I believe that anyone reading this thread dispassionately will see the truth regarding testing and allow the truth to guide their treatment insofar as they can and that's really the important thing. Mike
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Avatar universal
Just a little OT, is this 'less conflict' thing some of this MO's influence. LOL. What's with you two anyway? If both of you weren't married, you'd make quite a couple :)

-- Jim
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Avatar universal
Our last two posts crossed but thanks for the comments in "C32". I read them after I posted in "C33".

-- Jim
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Avatar universal
Had another thought but since this thread has more or less gone to pot anyway, thought I'd post here rather than above. Since your hematologist and hepo don't seem to see eye-to-eye anyway, maybe bring some of the studies over to the hemo and see if he'll give you that sensitive test. If I were thinking of reducing riba, or if the possibity was looming as it might be with rapidly declining hgb levels, then knowing I was non-detectible to 5 IU/ml, might make the decision to cut back a little on the riba easier, but keep in mind I'm kind of belt and suspenders when it comes to treatment.

-- Jim
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Avatar universal
My accountant did do it. All I had to do was write the checks and that was enough. I think you know how I feel about this thread. I must be changing a bit because I am not as eager to engage in conflict as I formerly was. I suspect that ribavirin might be at play here because as I said I don't think any of us really disagree. I am at a loss to figure out how we got here so I'm going to blame it on ribavirin until it is crystal clear that's not the driving factor. Mike
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Avatar universal
Sometimes you have to try and straighten out the past so that the future will work better.

I was called a name in the past, and I thought this was the appropriate time and place to resolve the issue so it would not crop up in the future. I'm a little surprised at your comments, because you of all people have always stood up both for yourself and others you felt wronged in these types of situations. That's all I'm doing.

Unfortuntaly, "rare" is not an accurate characterization of viremia hiding between the covers of PCR and TMA. If you check out the studies posted above on SOC, or read Mremeet's post regarding trial data. Unfortunatly, trial data is often slow to trickle down to the average GI, and the reason TMA technology is not used as often. Same thing with the 4-week PCR, and individualized treatment (either shorter course or extended). Takes awhile for the average GI to catch on/up.

My hearfelt sympathy regarding the whole tax thing. Personally, I'm just going to pick up the phone and tell my accountant to file an extension. Don't really want to deal with all that right now. Hope this finds you otherwise well.

-- Jim
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Avatar universal
I inadvertently posted this to you. I meant to leave the space blank but I must have copied and pasted while paying the IRS for 2006 and that always puts me in a different state of mind. I didn't mean to single you out - I was cornfused by the drudgery of my tax liability. I apologize that it seemed like I did single you out.  Mike
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Avatar universal
I try to believe that we're all driven by the same motivation - a search for the truth. Admittedly, ego can insinuate itself into just about everything we do or say but once we pause and dispassionately consider the situation we should be able to put ego aside and focus on the real picture. I am surprised and disappointed that this thread has come this far and generated passive, if not overt, animosity when it would seem that we all agree - the more sensitive test is better than the less sensitive test. And, it seems well established that there are instances, though they may be rare, when the less sensitive tests haven't detected low levels of the virus and as a result incorrect treatment decisions have been made and people have suffered. The mere possibility of error compels using the best and most sensitive test we can get. Mike
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Avatar universal
Kalio's statement is further clarified by what followed: "..
I wouldn't worry about it, if you are UND on the <50 test then you are UND."

----------
Again, simply untrue based on the multiple studies presented in this thread previously.
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Avatar universal
Ina,

Of course your correct. Kalio said previously:

If the virus is there, it will show up with the <50 test or the <5 test is what he is saying I think."

The statement stands for itself, it's simply wrong.
------------------------------------------------------
Kalio,

You called me out in a previous thread that I was being "passive agressive" because I made subtle references to you without addressing them to you directly.

Yet, you have done, and are doing the same thing here when you say, "...There seems to be a number of people here that make a mountain out of a molehill at everey turn. A federal case doesnt need to be made about the diff. between one VERY SENSItiVE test <50 and another VERY SENSITIVE test, <5"

I personally don't mind if you use my name or not but please don't be a hypocrite and make a big deal if I don't use yours in the future. I didn't do it because I was being passive/agressive but just that I thought it would be less confrontational, as I assume that is why you did it as well. Let's just play ball fair with the same rules for both, eh.

-- Jim
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Avatar universal
To try to construe an argument that I am somehow anti sensitive testing is ridiculous, please, gimme a break. That is not what is being said at all. A <50 test IS a sensitive test for heavens sake.

I know HR personally and have tons of respect for him, to insinuate I don't is really rude. As rude as trying to create some argument that I am anti sensitive testing. I AM anti overblow everything and over exaggerate every detail about Hep C however. There seems to be a number of people here that make a mountain out of a molehill at everey turn. A federal case doesnt need to be made about the diff. between one VERY SENSItiVE test <50 and another VERY SENSITIVE test, <5

There are much more important things to concern yourself with. He is on tx and UND, his <50 test is MORE than sufficient.

Detecting 45 more virii is making a mountain out of a molehill. The man's <50 test is fine, like his DOCTOR told him it was.
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Avatar universal
Why it is important to test as sensitive as possible has already been said above, no need to repeat it.
And no, I don't think HR is pushing sensitive tests because he invented them, that thought never crossed my mind, I think much too highly of him.
National Genetics makes their money testing the national blood supply, testing individuals is small fry, did squat doodley nothing to them.
The reimbursement under my plan for their Quant or Qual is around $100, same as for one of those antiquated "down to 615 I/U" ones.

The Berg study had no ax to grind.
I tried to translate it into English. Anybody interested, it's under "Tallblonde", in the community forum, quite a few weeks ago.
Now it can't be spelled out more clearly why sensitive testing is important.

Actually I cant believe that somebody as seasoned as you is defending a position that is clearly outdated.


Ina
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Avatar universal
He invents tests, of course he feels that way. He recommends his test too as I recall, wouldn't you if you had a wall full of patents for inventing tests? I sure would.

The average patient does not need to obcess over the diff between a <5 sensitivity test and a <50 sensitivity test on treatment. PCR testing on tx is by and large to gauge your progress.Some here seem to get all up in arms over it and act as if it is a medical necessity when it isn't. Maybe it's worth the trouble after tx is done and you are verifying you have SVRed, but it isn't worth worrying about on tx. Tx is hard enough without having to bust your tail trying to obtain a test that can only detect 45 more virii and isn't readily available for all.
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Avatar universal
Traveler,

If it were my dime and I had to spend it on either a week 12 TMA or an end of treatment TMA, I'd spend it on a week 12 TMA. That's because the chances are if you are non-detectible at week week 12 by sensitive TMA you will be non-detectible by sensitive TMA by end of treatment. The advantage of finding out now -- besides the anxiety issue -- is that it will give you and your medical team meaningful and more complete information right now to make future treatment decisions.

All the best,

-- Jim
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Avatar universal
First off, I'm assuming you're in treatment now, right? Your 4 week PCR is not post treatment? If so I'd go for the most sensitive test you can get if I were you. I got a test that went down to 2 IU/ml from LabCorp, which is the same sensitivity as the Heptimax test (in fact I'm starting to wonder if they're really the same test). I got the test ordered through my primary care doctor, it was no big deal. He originally diagnosed me with HCV so he knew I had it. I told him I wanted to see if the virus was in "remission". Since he knew very little about HCV or the specific test I wanted, he simply agreed to it and signed off on it. His secretary filled out the Labcorp paperwork and I provided her with the name and number of the test (available at labcorp.com). Done deal after that. And although I suspect the higher sensitivity test is more expensive, my insurance paid for nearly all of it. Also, I noticed on my copay bill (which was like $3 or something) that my insurance co only paid like $30 for the test! (normal "retail" is several hundred) I don't know whatever mechanism the insurance co uses to negotiate lower prices with labs/doctors etc, but as you can see it won't necessarily cost your insurance company a lot of dough. And therefore it shouldn't be too much fuss over its approval without you having to pay through the nose for it (assuming you have decent insurance).

As far as whether it's worthwhile to test down to 2 IU/ml, there's no question I'd want that level of sensitivity (although I'd also settle for 10 IU/ml if push came to shove). The reason I believe it's necessary and desirable is because during our time in the Vertex trial I've seen many people score "29's" during the trial. A 29 means that the patient is detectable somewhere between 10 and 29 IU/ml. And we've seen several patients report these 29's multiple times throughout their treatment, so they can't all be flukes. Also, nygirl just scored a 65 or 69(?) 1 month post, which obviously is less than only 20 IU's above a 50 IU/ml threshold. If I were detectable at a very low level in the early phase of treatment, given a choice, I'd certainly want to know it. This knowledge could play an important role in determining how I managed the remaining portion of my treatment (vis-a-vis early termination of treatment, extending treatment or increasing standard doses of IFN and/or riba). Depending on what that knowledge told you, it could conceivably even make the difference between getting your SVR, or not.

Also, I think a <50 IU/ml would be fine for someone who had completed/stopped treatment and were not planning to restart even in the event they relapsed. Or if they were getting a 1 year or longer post treatment follow up test to simply verify their SVR was still intact. Under these circumstances a 50 IU/ml would be fine in my opinion. It wouldn't matter if you were detectable at a lower level because you're not planning on restarting anyway. Plus, as I think Kalio was alluding to, if a relapse did occur after stopping treatment, the VL will nearly always soar well above a mere 50 IU/ml. It may take more than a month or two to fully break out, but to my knowledge in the vast majority of cases it will show itself in much greater numbers than 50 IU/ml. So I think the post treatment follow up tests would be ok at 50 IU/ml, although for my earliest post treatment tests I'd still want the most sensitive test, especially if I had the intention of restarting the drugs in the event I became detectable.

Lastly, if I were you I would print out a copy of the study jim referenced and hand it over to your doctor. I would also tell him that you wish to have the most sensitive test used for your remaining tests, especially for the tests near the end of treatment. You want to know to the best of your ability if you are truly negative, the virus can at times sit there at very low levels well below 50 and yet above 2 IU/ml for a prolonged time. I'd want to have the closest look possible before stopping the meds. If your doctor can't see the wisdom in this and firmly declines your request, then there is absolutely no question (if it were me), new doctor shopping would be my first priority the very next day. But remember if you do have to do this, your PCP might be able to take care of you in the interim by ordering the test required.

Good luck
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Avatar universal
I agree with you completely on this issue. I just hope that this discussion doesn't cause Traveler any additional anxiety but that it does enable him to bring with him to his doctor some valid evidence regarding this subject. Mike
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Avatar universal
HR thinks most sensitive testing is important, the latest Berg study said it is most important, and me (a nobody) thinks it is very important.

Ina
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Avatar universal
Once again thanks to all.
You are right that it is the comfort level I am looking for. With this disease you don't even know if it is ever gone, even if you do get to SVR. I have read many times that some think it can come roaring back later if you don't keep a real healthy lifestyle (no drinking, good diet).
I will bring the articles with me and try to get the <5 test. If not at 12 weeks I will get one before tx ends if I have to pay myself. I guess the most important time to get it is before stopping the meds so I will no whether to quit or continue longer treatment.
Of course my original plan was to quit after 12 weeks if not UND. I might have to take a UND<50 as to keep on going.
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