Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: mvnwy on September 17, 2015, 12:14:28 pm
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Hi, this is my first post since beginning Harvoni treatment 4 and half weeks ago. I just received my first lab results over the phone and my doctor's medical assistant just told me I am detectable at 15. They have had "several" people test at CPL which is the lab I used who have had the exact same result...15!! then retested within a couple of days at Labcorp... and been UNDECTABLE.
I am very frustrated because:
No one told me not to go to CPL
Doc believes I'm undetectable too so is assuming I only need 8 weeks of treatment and will not test me again until 12 weeks post treatment!
Medical assistant says insurance companies are not paying for those second "non-CPL" tests and the test is expensive, therefore is not ordering that second test for me at Labcorp.
I am thinking about what I should ask/demand at my next doctor appointment in two weeks. Very frustrated with the seeming bumbling in the dark approach.
Anyone else have any experience like this?
I have had Hep C since 1973, can't remember all my stats but doc says my viral load was low pre treatment (relatively... was in the low millions) and biopsies have always been 0/0 until last one which was "low" 2/2 according to doc, whatever "low" means.
thanks for any input.
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What is CPL?
Is this a national lab chain?
No matter what the answer my advice would be to retest sooner at Labcorp even if you have to pay for it. I would not want to wait until many weeks after treatment ends to find out.
Especially if your doctor could extend your 8 week treatment to 12 weeks depending on the answer. One big lesson I have learned on this journey is to never assume anything!
Best of luck to you mvnwy, most likely our more educated forum moderators will chime in and give you the facts. I am talking from emotions and mine do run high sometimes I admit ::)
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i just joined this forum today and also looking for other's experiences, i was tested at 3 weeks (on 8 week protocol) and VL dropped from 5m to 54--and liver enzymes remained elevated but not super high, so i asked my Doctor to try to get authorization to extend to 12 weeks which they did. I was surprised that it got approved without a lot of hassle, because i lost 2 appeals and then won the independent one to get treated at all. I will also be tested again at 8 weeks and assuming i will be clear but take it another month anyway..
anyone else?
I'm Gentoype 1a and fibrous F1
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i just joined this forum today and also looking for other's experiences, i was tested at 3 weeks (on 8 week protocol) and VL dropped from 5m to 54--and liver enzymes remained elevated but not super high, so i asked my Doctor to try to get authorization to extend to 12 weeks which they did. I was surprised that it got approved without a lot of hassle, because i lost 2 appeals and then won the independent one to get treated at all. I will also be tested again at 8 weeks and assuming i will be clear but take it another month anyway..
anyone else?
I'm Gentoype 1a and fibrous F1
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Welcome to the forum Luccagirl! I see some that have tests at two weeks and there is still some virus left and then at 4 weeks or after it shows UND. Anyway, glad you got the extra month. That's awesome! I tend to think more is better for best chance of a cure. Sometimes I think those that relapse didn't get treatment quite long enough. Best of luck and see you on the forum!
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Welcome mvnwy, I just wanted to say welcome to the forum. Yes, I hope you can ask your doctor for more labs sooner even if they use the CPL lab again due to inconsistencies in results for your own peace of mind if nothing else. Was the one at Labcorp a new blood sample? A couple of days can make a big difference in showing slightly detected and then to UND.
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Thank you so much, Bree and Sapphire101 for the welcome! :D
I am not sure if I'm replying correctly... to Sapphire 101, yes, CPL is a chain of labs. I called my insurance company after I posted here and was told there is NO LIMIT to how many times I can be tested to see if treatment is working. I will call a few more times and see if I get the same answer, lol... been given incorrect info too many times to trust the first call. And a friend who works in the medical field said labs will lower the fee for self-pay so it shouldn't be that expensive even if I do end up paying.
Either way, I will insist on a new test for this 4 week mark. This doctor has been rather cavalier with my health in the past as well and I stayed with him for the Harvoni treatment simply because it is such a nightmare to change doctors and i really thought this protocol was pretty straight forward. I'm finding out each doc does something different.
And yes, Bree, all the new labs for all the patients that scored 15 at CPL had new blood draws at Labcorp. And they all were UND at Labcorp.
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i just joined this forum today and also looking for other's experiences, i was tested at 3 weeks (on 8 week protocol) and VL dropped from 5m to 54--and liver enzymes remained elevated but not super high, so i asked my Doctor to try to get authorization to extend to 12 weeks which they did. I was surprised that it got approved without a lot of hassle, because i lost 2 appeals and then won the independent one to get treated at all. I will also be tested again at 8 weeks and assuming i will be clear but take it another month anyway..
I am on my last week of the 12 week treatment plan. I have been undetectable since week 4. Undetectable at week 8. I am assuming they will retest me 90 days post treatment. Minumal side effects, been getting headaches lately, but not too bad. I wish you the best of luck on your journey.
anyone else?
I'm Gentoype 1a and fibrous F1
-
i just joined this forum today and also looking for other's experiences, i was tested at 3 weeks (on 8 week protocol) and VL dropped from 5m to 54--and liver enzymes remained elevated but not super high, so i asked my Doctor to try to get authorization to extend to 12 weeks which they did. I was surprised that it got approved without a lot of hassle, because i lost 2 appeals and then won the independent one to get treated at all. I will also be tested again at 8 weeks and assuming i will be clear but take it another month anyway..
anyone else?
I'm Gentoype 1a and fibrous F1
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I am on my last week of the 12 week treatment plan. I have been undetectable since week 4. Undetectable at week 8. I am assuming they will retest me 90 days post treatment. Minumal side effects, been getting headaches lately, but not too bad. I wish you the best of luck on your journey.
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Congratulations mvnwy on getting extended!
It does sound like the longer protocol is better for SVR, so cheers to you :D