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viral load testing

by kitkat14, Jun 11, 2008 09:20PM
Yesterday, I received the results of my blood test taken one week after I started pegasys and riba.  I know that a low ALT count is not really indicative of the damage being done to the liver, however, my ALT went from 166 to 71 in that one week.  My doctor decided to order the viral load test to see where I am despite my only having completed 18 days of tx (3 shots worth).  I don't think she intends to run another viral load test until I have finished 3 months.  I would like to take the test at the end of 4 weeks since it is such a benchmark date, but I don't think it is in the works.  I had a starting viral load count of a wopping 9,450,000 (9.45 X 10  6 iu/ml).  I expect the results of yesterday's viral load test in 3-4 weeks.  Comments?
Member Comments (21)

by redrodeo, Jun 11, 2008 09:27PM
To: kitkat14
     Those enzymes drop very quickly, and its a good sign. I have two concerns:
1) why does it take 3-4wks to get the results and 2) viral load at wk 4 is very important. Is he a specialist? What differnece does it make to him if you have another test at wk 4?
I would push for another test. Did she say she wasn't testing again until 12wks?
     Red

by kitkat14, Jun 11, 2008 09:48PM
To: redrodeo
Welcome to the Canadian medical system.  
I asked why it took so long and I was told that there is only one lab that processes the viral load test -Public Health.  They apparently "save up" all the requests they get for the test and then run them as a batch when they get enough.  Sometimes you wait a week, sometimes you wait a month, its the luck of the draw.  
This is also why the specialist at the hospital's liver studies unit may be reluctant to order this test at 4 weeks.  All the other blood tests are performed right in the liver studies unit so they have the results by the next day.
k

by r4c7, Jun 11, 2008 09:58PM
To: kitkat...
Drop in enzymes is a very good sign.  Too bad you don't have a viral load yet, I bet you've had a huge drop.  Incidentally, 9.4 million viral load is no big deal.  I had 22 million and cleared.  Another member had 22 million and he cleared.  I've heard that some viral loads are 100 million...imagine???  100 mil.

r4c7

by kitkat14, Jun 11, 2008 10:20PM
To: r4c7
I can't imagine having a viral load of 100 million.  I'm glad to hear that you and others have managed to clear with a viral load of 22 million.  Its comforting to hear that this virus can be beaten.  
I thought I had read in a thread here that the average viral load when people typically start treatment is at 3,200,00 so 9,450,000 seemed huge.  I was at 2,780,000 about a year ago so I was surprised at how much it had increased during that time period.
Thanks for the comment that a drop in enzymes might mean a significant drop in viral load.  That's what I was hoping to hear!
k

by Trish77, Jun 12, 2008 01:23AM
To: kitkat14
I'm intrigued.  I'm in the Canadian medical system and being treated out of Toronto Western.  Yourself?  I'm surprised that anyone would order a test at 18 days when ordering a test at 28 days .. ten days later....makes so much more sense.  Really, it's not when you get the test back, it's when it gets taken.  You aren't going to stop treatment or anything because the test takes a month to come back.  And, frankly, in the Canadian medical system, there isn't much tweaking of treatment drugs and approaches to be had.  The protocols are what they are.  So makes me a little concerned about the approach your doctor is taking.

As it is, the Canadian government approves only a set regimen of PCR testing and only qualitative testing at certain points and not quantitative.  Even if you WANT a test at a certain point, your doctor's hands may be tied.  That is also why I wonder why at 18 days, unless that's actually the 2 week test.  I know I'd have gotten tested at 2 weeks and 4 weeks if I was on regular treatment.  I happen to be in a drug trial so my testing has been according to clinical trial guidelines instead of Canadian government guidelines and my tests get processed in the U.S.

You're the second Canadian in our area I've seen on here in the last week.  Interesting. :)

Trish

by kitkat14, Jun 12, 2008 05:54AM
To: Trish77
I'm being treated out of Mount Sinai on University Ave.  Another reason that there may be no four week test is because my monitoring doctor is going to be on vacation at the end of my four weeks.  I am scheduled to see my official treating doctor (who is running the liver studies) at the six week mark while my monitoring doctor is away.
Perhaps I will have "some sort of an ailment" to discuss with the treating doctor on June 20th so that I can push to have the 4 week test done as well.  It probably wouldn't really make that much of a difference to the treatment regime I follow, but it would be good to know how I am doing at this benchmark time.
You mentioned that you are in a clinical test, is this your first time around or are you retreating?
k

by kitkat14, Jun 12, 2008 06:28AM
To: Trish77
Just curious...... who is the other Canadian in our area?
k

by nygirl7, Jun 12, 2008 08:27AM
Another reason that there may be no four week test is because my monitoring doctor is going to be on vacation at the end of my four weeks.


All the doctor has to do is fill out the paperwork order for it and send it to the blood lab.........you can go in at any time to get the blood drawn, it doesn't matter if he is around at the time or not (at least here in the USA).

I would want the 4 week test although if you have the 3 week test and have responded well at least it's better than some doctors who just refuse to give any test until week 12.

Enzyme drop is a GREAT thing and shows you are responding beautifully I'm sure!

by HectorSF, Jun 12, 2008 08:30AM
To: kitkat14
One small detail... You are being setup to fail treatment!

If you don't get tested at 4 weeks and 12 weeks and 24 weeks you will never know how you responded to treatment. And if you fail to get SVR you will never know why. So you are flying blind.

You should ask your doctor what their percentage rate for SVR in genotype 1s is. It has got to be low. Way below 50%.

I would try to get another doctor somehow, someway. A Gastroenterologist or Hepatologist at least. Someone who is knowledgeable in current treatment protocols.

Good luck to you.
Hector

by Trish77, Jun 12, 2008 11:29AM
To: kitkat
I'd be interested in knowing more about your experiences with Mount Sinai.  When I google Mount Sinai Toronto HCV, which I did last night for other reasons, not much information comes up.  

I know what Hector is saying, however there are limitations to what tests you can have in our system.  I would suggest you ask at what frequency you will get your PCR's and whether they are qualitative or quantitative.  I believe they will give you qualitative only at some of the mileposts and if you have not cleared the virus, I'm not sure that they will do a quantitative at that point.  You may want to ask.  It was put to me that they would not, as it's a government limitation.  However, I found alot of the information conflicting from various sources....that's why I suggest you get clear information if you want it.

I don't mean to be discouraging...these things were important to me and I like to know my realities.   In this case, getting another doctor may not matter a bit if your limitation is government policy.

Trish

by kitkat14, Jun 12, 2008 07:05PM
To: All
Thanks for your comments.  It seems that everyone feels I am justified in insisting on a four week test in addition to the one taken at 2 1/2 weeks.  That was my initial feeling, and why I mentioned it in my post, to see what others reactions might be.  

When I started treatment I asked about the frequency of the viral load testing and I was told -4 weeks, 12 weeks, 24 weeks and 48 weeks, the standard protocol.  I don't remember what was said about after tx.  So I will push the 4 week issue with my doctor, I just wanted to make sure I wasn't being unreasonable about it.  (Trish, I'll see what I can get out of the Canadian system.  Being in the know is important to me too.)  

The tests given at these frequencies would be quantitative tests, would they not?  I thought qualitative tests would only be given as the initial test to see if there was HepC present, and then again when the virus had completely cleared the system.  Is that correct.
k

by Trish77, Jun 12, 2008 07:24PM
To: kitkat14
kitkat14: The tests given at these frequencies would be quantitative tests, would they not?  I thought qualitative tests would only be given as the initial test to see if there was HepC present, and then again when the virus had completely cleared the system.  Is that correct.
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When I went for my second appointment with my Toronto docs, I was either going to end up in the drug trial or end up going right into regular treatment.  I asked about these tests and I was told it would be qualitative.  The nurse kept telling me that it was a good test because it was <50.  And I kept saying to her .. "but if I'm NOT less than <50, I won't know how much I've dropped." and she finally admitted that was true but that was what the government allowed and not the quantitative.  Not happy me.

Since then, I've heard a hepatitis nurse (apparently there is an actual organization for Hepatitis nurses in either this province or this country) say that testing is done at more frequent intervals.  I didn't get the chance to ask her what kind of testing.  It was a presentation and I was already asking enough questions.  

So...again, kitkat...I'd say ask them.  I wouldn't mind knowing what answer they give you.  Like I said, I've heard different versions on this tale.  So best to ask, I'm thinking.  And maybe different docs push for different things and maybe I was being fed a line because they don't like patients getting out of line.  Who knows.  Good luck with that, kitkat.

Trish