Aa
viral load testing
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?
That shows what a slow typist I am. I only read your post after I typed my last one.
The upper limit on the new viral test must be more that 1.3 million because mine came back with a result of 9.45 million and I took my benchmark starting test in mid-May, after the new test protocol came into effect.
Mount Sinai has a smallish department that specializes in livers diseases. (three doctors, four admin staff and one lab technician) I believe they treat a lot of people for hepc there. (under Feinman) The official department name is -Hepatitis centre, Liver Study Unit, Hepatology & Gastroenterology.
k
The upper limit on the new viral test must be more that 1.3 million because mine came back with a result of 9.45 million and I took my benchmark starting test in mid-May, after the new test protocol came into effect.
Mount Sinai has a smallish department that specializes in livers diseases. (three doctors, four admin staff and one lab technician) I believe they treat a lot of people for hepc there. (under Feinman) The official department name is -Hepatitis centre, Liver Study Unit, Hepatology & Gastroenterology.
k
I'm sorry to hear that .. consistent with what I was told, that the government will only pay for so many.
I'm going to be blunt. Your doctor doesn't know her stuff. She's not up to date. That answers my question about Mount Sinai. And is typical of care in Canada, it lags behind.
The 4 week test, to me, is a critical indicator. Maybe some docs don't care about that because it's the 12 week test that determines how you're responding to treatment with regards to if you'll continue or not. If you haven't dropped two logs by that 12 weeks, then they'll take you off. That 12 week mark IS an important marker.. however, as a patient....as the person with HCV....that 4 week test is a big milestone.
Kitkat, how long do you have to wait for results? If this comes back UND, then the 4 week test won't matter.
If you go to the U.S., by all means, please post how it goes. There are way too many Canadians with HCV who are in the same boat, with only two Public Health labs in Canada processing PCR's and nobody else doing it.
btw, Kitkat...someone posted phone numbers for labs across the border for me in an earlier post when I was looking into this back when.. I'll go looking for that. Then you can call them first and ask what their requirements are. I'll see what I can scare up from previous posts.
Take care.
Trish
I'm going to be blunt. Your doctor doesn't know her stuff. She's not up to date. That answers my question about Mount Sinai. And is typical of care in Canada, it lags behind.
The 4 week test, to me, is a critical indicator. Maybe some docs don't care about that because it's the 12 week test that determines how you're responding to treatment with regards to if you'll continue or not. If you haven't dropped two logs by that 12 weeks, then they'll take you off. That 12 week mark IS an important marker.. however, as a patient....as the person with HCV....that 4 week test is a big milestone.
Kitkat, how long do you have to wait for results? If this comes back UND, then the 4 week test won't matter.
If you go to the U.S., by all means, please post how it goes. There are way too many Canadians with HCV who are in the same boat, with only two Public Health labs in Canada processing PCR's and nobody else doing it.
btw, Kitkat...someone posted phone numbers for labs across the border for me in an earlier post when I was looking into this back when.. I'll go looking for that. Then you can call them first and ask what their requirements are. I'll see what I can scare up from previous posts.
Take care.
Trish
I checked with my doctor an hour ago, and there is no way I can get a test at the end of the four week mark here in Canada through Public Health. She says that they will refuse to process it because I just had one done on Tuesday. (the end of the four weeks for me is next Friday). She told me that she ordered the test early because she knew I was anxious (isn`t everyone in this situation). I told her that I would rather have waited had I known the implications. She kept insisting that it is the 12 week test that really counts and that I shouldn`t worry so much.
So as I drove home, I thought about driving down to Buffalo to see what I could do to pay for the test. I certainly like the idea of doing it through Gamma-Dynacare or CML instead of having to make the trip. I`ll check into your suggestion and let you know how things work out.
Enjoy the weekend (despite the possibility of rain!)
k
So as I drove home, I thought about driving down to Buffalo to see what I could do to pay for the test. I certainly like the idea of doing it through Gamma-Dynacare or CML instead of having to make the trip. I`ll check into your suggestion and let you know how things work out.
Enjoy the weekend (despite the possibility of rain!)
k
FoieGras, have you ever asked the Public Lab if you could pay for your own test? I was pursuing that first part of this year when I discovered a few facts:
- only two labs in Canada processing PCR's
- both are government labs - one in BC, one in Ontario
- quantitative tests were sensitive only to an upper limit of 1.3mil IU/ml at both labs - NOTHING available in Canada that tested higher and I was already at the upper limit
So it didn't matter whether I paid for my own test or not, I still wouldn't know my baseline viral load, which is what I was after. So I stopped short of asking if I could pay for my own test and started looking into U.S. options instead only to get in the drug trial and getting everything I wanted and then some with regards to PCR's.
I was also told that they were coming out in a few months with a test with a much higher upper limit. Perhaps that's the deal with this information you've posted, FoieGras.
My family doctor gave me a blanket "prescription" for monthly quantitative PCR's as I set out on my naive little journey to get my own. That was easy peasy. Then I found out the reality.
Couple questions now I have for them - what's the upper sensitivity of this new test - lets you know if it's worth pursuing question #2 ...can I pay the lab directly for the test?
As for testing in the U.S., any idea if you can cross the border and get your blood taken there? It's only an hour and a half away from me and I drive 1 -2 hours (depending on time of day/traffic) into Toronto for my care as it is. Ya know, we could organize PCR carpools.. lol :)
Anyway....now you've got me curious. I put that on the backburner and now you've got me curious how good this new test is.
If they'll still give you a viral load if you measure positive for viral load on a qualitative, then that's fine. I go for my next appointment on July 4th...will ask. Would be interested to know if we all get the same information.
There haven't been that many Canadians here really...only in the last week or two there seem to have been a spurt of us .. interesting.
I find that in some ways, depending on what you're after, going with a doc NOT in a big ger hospital can have it's benefits in Canada. In the bigger hospitals, they take the "global" approach rather than the individual approach and treatment is decided upon as policy rather than individually. Even individual doctors still go by the "guidelines" it seems, particularly those who don't treat many HCV persons....there are government-issued treatment guidelines that are outdated .. although I was told they've just issued updated ones and I need to go looking for them.
If anyone has those.. please post!
- only two labs in Canada processing PCR's
- both are government labs - one in BC, one in Ontario
- quantitative tests were sensitive only to an upper limit of 1.3mil IU/ml at both labs - NOTHING available in Canada that tested higher and I was already at the upper limit
So it didn't matter whether I paid for my own test or not, I still wouldn't know my baseline viral load, which is what I was after. So I stopped short of asking if I could pay for my own test and started looking into U.S. options instead only to get in the drug trial and getting everything I wanted and then some with regards to PCR's.
I was also told that they were coming out in a few months with a test with a much higher upper limit. Perhaps that's the deal with this information you've posted, FoieGras.
My family doctor gave me a blanket "prescription" for monthly quantitative PCR's as I set out on my naive little journey to get my own. That was easy peasy. Then I found out the reality.
Couple questions now I have for them - what's the upper sensitivity of this new test - lets you know if it's worth pursuing question #2 ...can I pay the lab directly for the test?
As for testing in the U.S., any idea if you can cross the border and get your blood taken there? It's only an hour and a half away from me and I drive 1 -2 hours (depending on time of day/traffic) into Toronto for my care as it is. Ya know, we could organize PCR carpools.. lol :)
Anyway....now you've got me curious. I put that on the backburner and now you've got me curious how good this new test is.
If they'll still give you a viral load if you measure positive for viral load on a qualitative, then that's fine. I go for my next appointment on July 4th...will ask. Would be interested to know if we all get the same information.
There haven't been that many Canadians here really...only in the last week or two there seem to have been a spurt of us .. interesting.
I find that in some ways, depending on what you're after, going with a doc NOT in a big ger hospital can have it's benefits in Canada. In the bigger hospitals, they take the "global" approach rather than the individual approach and treatment is decided upon as policy rather than individually. Even individual doctors still go by the "guidelines" it seems, particularly those who don't treat many HCV persons....there are government-issued treatment guidelines that are outdated .. although I was told they've just issued updated ones and I need to go looking for them.
If anyone has those.. please post!
Agreed that it would be reassuring.
Labs in the states will do the viral RNA for around $400. The problem then becomes getting yr doc to order the test and getting a lab to draw the blood, spin it down, freeze it, package it, and make sure it gets off to the States...which is what the labs require. Gamma-Dynacare or CML may be amenable to doing this, but I bet they will charge an arm and a leg...another $400???
Labs in the states will do the viral RNA for around $400. The problem then becomes getting yr doc to order the test and getting a lab to draw the blood, spin it down, freeze it, package it, and make sure it gets off to the States...which is what the labs require. Gamma-Dynacare or CML may be amenable to doing this, but I bet they will charge an arm and a leg...another $400???
It would be reassuring to be able to order the extra tests if you are willing to pay for them. I know I would.
While I was waiting for my tx to start, I followed a regimen of alternative therapy treatments to lower my AST & ALT counts. Because I wanted to know if I was making any progress (I was) and I couldn`t keep getting the tests through the regular channels, I paid to have those test performed at the naturopathy college. I don`t think they do the PCR tests though. I`ll check.
k
While I was waiting for my tx to start, I followed a regimen of alternative therapy treatments to lower my AST & ALT counts. Because I wanted to know if I was making any progress (I was) and I couldn`t keep getting the tests through the regular channels, I paid to have those test performed at the naturopathy college. I don`t think they do the PCR tests though. I`ll check.
k
Actually, hot off the press from the Ontario Assoc Medical Labs, April 2008....
"1. The previous qualitative and quantitative tests have been replaced with a single, more sensitive HCV RNA test."
Stick all these together for the link:
www.health.gov.on.ca
english
providers/pub/labs/labstracts/hep_c_ahcv_LAB-SD-034-000.pdf
"1. The previous qualitative and quantitative tests have been replaced with a single, more sensitive HCV RNA test."
Stick all these together for the link:
www.health.gov.on.ca
english
providers/pub/labs/labstracts/hep_c_ahcv_LAB-SD-034-000.pdf
Get yer 4 Week test! Hector's right. You need to be able to compare apples to apples.
The 4 Week is qualitative, but still gives you a number. The 12 Week is the quantitative one, the one that picks up even very low values of HCV RNA.
I just sent off my 12 week one, and I hope it aint gonna take a month! I phoned the Public Health Lab and they said it takes 3days if ordered stat...so I scrawled stat on the req, let's see what that does!
Lotsa Canadians here - all from Toronto? I'm being treated by a GI guy at Mike's - very pleasant and he listens. I know Heathcote and Sherman and Feinman are the gurus, but I'm not sure I would do well at a big clinic with sweaty-palmed residents trying to palpate my liver and spleen...
What we as Canadians see is care of a POPULATION - where decisions are made about resources and where to spend money, maximizing the overall cure rates...versus care of a PATIENT, which in an ideal world would have the patient, if prepared to pay, control when and why tests are drawn. You want to know if you are going to respond to IFN/RBV? Measure gene expression response to IFN, like Heathcote's recent paper at EASL. Want to check if you are still UND? Go ahead, pay for the test as many times as you want...
Bill Gates gets that kind of care, but many americans are stuck with insurance cos that are just as restrictive as OHIP...
The 4 Week is qualitative, but still gives you a number. The 12 Week is the quantitative one, the one that picks up even very low values of HCV RNA.
I just sent off my 12 week one, and I hope it aint gonna take a month! I phoned the Public Health Lab and they said it takes 3days if ordered stat...so I scrawled stat on the req, let's see what that does!
Lotsa Canadians here - all from Toronto? I'm being treated by a GI guy at Mike's - very pleasant and he listens. I know Heathcote and Sherman and Feinman are the gurus, but I'm not sure I would do well at a big clinic with sweaty-palmed residents trying to palpate my liver and spleen...
What we as Canadians see is care of a POPULATION - where decisions are made about resources and where to spend money, maximizing the overall cure rates...versus care of a PATIENT, which in an ideal world would have the patient, if prepared to pay, control when and why tests are drawn. You want to know if you are going to respond to IFN/RBV? Measure gene expression response to IFN, like Heathcote's recent paper at EASL. Want to check if you are still UND? Go ahead, pay for the test as many times as you want...
Bill Gates gets that kind of care, but many americans are stuck with insurance cos that are just as restrictive as OHIP...
Thanks for your post. It never occurred to me that they wouldn`t be quantitative tests. I will certainly find out and let you know.
k
k
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
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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
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
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
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
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
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
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
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!
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!
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
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
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
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
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
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
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
r4c7
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
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
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
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
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