post tx lab tests and how often

I hope many of you will recommend tests that I should ask my Dr to give me at the end of treatment.  I am not fully confident that my Dr will order everything in my best interest.  During tx (pegasys/riba/procrit) I have been taking weekly/every two weekly standard lab tests like alt, ast, bili, pt, cbc.  Only given VL test before tx.

What lab tests should be done?
Plus how often should I get those lab tests?

Thanks for your advice.
-Carol

[kcrandy]

welcome.  :O)


with what little info you have given i am guessing you might be using a reg doc and quite possibly not a hepc specialist.  from what i know test for vl should be done weekly for the first twelve weeks of tx but it seems the status quo is test vl b4 tx, 4 weeks into tx 12 weeks into tx, then 6 mths, 12 mths into tx depending on what your tx plans are.  and if you have already finished tx my doc tested me at the end of tx, then at 3 mths, then at 6 mths, and possibly 1 year after tx,  and then periodically after that.  i hope this helps.

i am quite sure you will get more responses to your question.

[kcrandy]

welcome.  :O)


with what little info you have given i am guessing you might be using a reg doc and quite possibly not a hepc specialist.  from what i know test for vl should be done weekly for the first twelve weeks of tx but it seems the status quo is test vl b4 tx, 4 weeks into tx 12 weeks into tx, then 6 mths, 12 mths into tx depending on what your tx plans are.  and if you have already finished tx my doc tested me at the end of tx, then at 3 mths, then at 6 mths, and possibly 1 year after tx,  and then periodically after that.  i hope this helps.

i am quite sure you will get more responses to your question.

[FoggyintheAM]

thanks.  I'm going to a Dr who is a hepc specialist however, all through tx I have only seen the nurse practioner who interfaces with the Dr.  

a bit odd, but I'm at Kaiser in CA, so sometimes that is the way things are done.

I have 3 more injections and one additional week of riba left.  I will have txed a total of 33 weeks.  They wanted me to tx full dose for 24 weeks.  Initially I had to start out lower dose of peg due to arthritus.

So post tx should be vl for sure.  Other tests that I should insist on would really be appreciated.

[jmjm530]

Like "KC" suggested, you should have been given viral load tests during treatment as a matter of course. Even more so because you were eased into the Peg because your arthritis. At a minimum, testing for viral load should have been done at week 4, 12 and at end of treatment, which in your case appears to be week 33.

At this point, sounds like you're at week 30.  Personally, I'd ask for a very sensitive viral load test like Quest Diagnostic's Heptimax now to see if you are UND. If not, you would want to discuss your options directly with your doctor although it might be a little late in the game to change things unless your tx history and histology warranted it.

As to the end of treatment test -- that would be taken six days after your last Peg injection. After that, you would want to test viral load at 3, 6, and 12 months post treatment. If you want to have an indication of SVR earlier, and if insurance allows, some of us are also test  for viral load 4 weeks after treatment ends.

-- Jim

[FoggyintheAM]

thanks Jim. I had written a response, but hit some key and it disappeared.

I will be insistent that my post-tx lab test is the sensitive one. However I really worry that I'll get the "oh yes this is the sensitive test" when it really isn't.

Also I'll ask for vl test 4 weeks, then every three months post.  RN had mentioned that it may be every six months or a yearly for lab tests.  Nuts I think.

Plus she told me if I am detected that I could wait six months and re-treat.  I told if so, no (that's my position at the moment).  I will wait for something else as long as I am pretty healthy and with low liver damage.

Here is the test we did back in June b4 tx
HCV POST
HCV Qual Post            detected   negative
HCV Post Interp
   this test is done by TMA assay.  The sensitivity of this assay is 7.5IU/mL

hcv load
hcv load bdna                h            2378420 iu/ml
Log10 rna                                   6.38
hcv load interp
  1 iu/ml = 5.2 hcv rna copies/ml

[nygirl7]

I'm a little bit confused...WHEN did they do your viral load - only BEFORE treatment and never again?  That just doesn't seem possible, are you sure they didn't do it and perhaps just never relayed the information to you?

Especially at such a huge place like Kaiser with a "specialist" it doesn't seem possible that they could not have done the regular ones - even if they didn't do a 4 week they HAD to have done a 12 week and 24 week in order to know whether or not to keep you on the meds.

Did I read all of this wrong?

[FoggyintheAM]

Seriously no kidding - they only did the vl tests before treatment only.  

The RN insisted because I was geno3a, that they would not test my vl til end of treatment.  All during treatment, until recently, I had paper lab slips, so I knew what was ordered.  I think the thought process they are using in my case is it makes no difference what the vl tests values are.  They plan to treat full course no matter what.

[nygirl7]

That is such completely wrong information I can't believe it or stand it. How in the world do they "guess" that the treatment is even working so you know whether or not to continue?

the first rule in this whole thing pretty much is finding out whether or not the meds are working - adjusting them etc. is important but if you aren't even responding WHY would you continue to pump poison into your body?

This makes me just livid. It makes no sense?  We've got loads of geno's in here besides geno 1 and every single other one of them has followed the exact same protocol!

You have to treat with absolutely no idea if you are even responding to the drugs is basically what they are saying?

That, Foggy, is pure BS.  I've never heard such a thing in all the years I've been on here and I would really question it big time when I saw them next.

I just don't understand it at all.  It makes me question all of the other things they've done to you.

Lets just pray that it worked for you - that is all you can do now. God forbid you should ever have to retreat PLEASE don't let anyone do this to you again. At MINIMUM it should have been done at 12 and 24 preferably with a test at week 4.

For your follow up you INSIST pleasantly that you get the proper testing done.  4, 12, 6mo 1 year.  Don't accept anything else in fact if they say no you just insist upon it.

Gosh I wish you had found the forum earlier!

[FoggyintheAM]

thanks - I should have insisted, but honestly I like so many of you, am pushing on week by week.  I am going to be more proactive.  that is what I've really learned to do.

The alt and ast tests were done each month and those did get back down into normal levels.

I remember back in 2000 when I first was diagnosed I asked the liver specialist what that vl number was.  She told me not to worry about it.  It's funny after reading so many people's experiences, that her answer was so wrong to give to me.

This is just an experience that I will not get too upset over.

carol

[jmjm530]

I cannot disagree with most of what NYGirl says except that I've read worse here from supposedly good medical groups.

But to put things in perspective, approximately 80% of geno 2's achieve SVR, so the odds are still heavily stacked in your favor, and like you said, it's an experience you should not get too upset about.

Moving forward, just do the suggested EOT test and post treatment tests. Statistically you should do just fine.

All the best,

-- Jim

[jmjm530]

I cannot disagree with most of what NYGirl says except that I've read worse here from supposedly good medical groups.

But to put things in perspective, approximately 80% of geno 2's achieve SVR, so the odds are still heavily stacked in your favor, and like you said, it's an experience you should not get too upset about.

Moving forward, just do the suggested EOT test and post treatment tests. Statistically you should do just fine.

All the best,

-- Jim

[FoggyintheAM]

thanks Jim.  fyi I'm a geno3a.  I think the statistics may be similar btwn 2 and 3.

[jmjm530]

Yes, similar stats, and definitely in your favor -- so while no excuse for not being tested during treatment -- you still have every reason to remain optimistic about a positive treatment outcome.

Be well,

-- Jim