Home Forums Main Forum Patient Stories 2b’s test 4 week tests–hmmm

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  • #5477
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    I know Chester, but you know, I cant help but wonder “33.9” what? above 1? I know its 33.9 something, I know its at least 33.9 times more than I would want it to be, but damn…sure would have been nice if they had told me who/what the 33.9’s were….

    Rest of stuff looked good, albumin and bilirubin and stuff, the alkaline phosphatase sadi 50….my sodiums at the top at 145 and my glucose is 96, so I guess I need to be trying to ameliorate those things…

    Hopeflly they also did the useful test and it just takes longer, otherwise Ill have to give them more blood and wait some more to find out I guess. I can’t even envision a reason for ordering a test like that for me, at this stage of treatment/disease. maybe to pump up the bill to the insurance company.


    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    #5479
    Avatar photoChejai
    • Guardian Angel
    • ★★★★★
    @chejai

    Yeah sorry i can’t add anything to what your test was but in agreement with Bloot. When I went for my 1st appointment at the public hospital clinic my GP, at that time, sent me off for full blood work including Viral Load. Gave me copies to take to the Specialist and when he looked at that page VL result, he says, ‘I don’t know what that’s for it’s useless!’ He was actually annoyed! I was impressed my Dr had ran everything. After that they always made me get my blood done at the hospital and wouldn’t send copies to my DR for either of us to see!

    So 2b are actually paying out of pocket for these? I know your healthcare system is very different to ours. Be pretty PO’d if I was :(
    Hope you get it sorted, Good Luck!


    QLD Australia ☀️
    G3a HCV 35 yrs Tx naive
    Started Sof/Dac 13/01/16

    Dec ’15
    AST 70
    ALT 89
    GGT 124
    Fibroscore 8.5
    F1-F2
    13 Feb’16 VL UND #woohoo!
    AST 24
    ALT 26
    GGT 50H

    #5481
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    No this is billed to insurance company, which now im thinking maybe that’s why they ordered the useless test instead of the one I need to know


    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    #5491
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Hi all,

    My understanding of quantitative viral load testing is that while pretreatment levels were considered somewhat indicative of likely response under the old interferon treatments they are much less relevant with the new DAAs. They are still useful while monitoring treatment to see whether you are responding quickly but mostly at a “comfort” level with the real tests being qualitative at EOT and most importantly SVRxx. (And obviously important for RVR testing such as Dr James was recently performing with the Sof/Dac tablets to show they were as effective as the seperate APIs)

    When writing my scrip and 4 week monitoring tests my specialist checked my records and said something to the effect “oh, we don’t have a current VL. No matter, we know from previously that it will be high so let’s just see where it goes at 4 weeks”. And given that Dr James says I am only entitled to 2 freebies per year I can understand that approach because it means I am still entitled to another one later if 4 wk isn’t UND.

    However that doesn’t really help you 2b with your expectation that you would get a 4wk VL result and the ease of mind that a good result would give. Keep pushing them for what you requested and they agreed to at the time. And keep pushing your doctor to support you in managing your health by explaining to you in plain English what your results mean. And probably interceding on your behalf with the testing company if that is the U.S. approach like it is in Australia.


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #5492
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hi All

    I go for the all important 4 week blood test tomorrow and hope to have the results by the 21st. When I was first diagnosed my GP (whom I have since ditched and got one who actually knows something about HepC – I was having to tell the first GP what tests he had to run) ordered a Viral Load test (when I asked him to). So this next test will be the second for 2015. Hopefully I won’t need to have another until end of treatment…….I am lucky in that I have a supportive GP and the bloods are taken at the Medical Clinic. My GP was sure to put on the blood test request “currently being treated with DAA for HepC (which is on the GP cheat sheet)…….so hopefully I wont get charged for this second one. Reading some of the experiences from others on the Forum I count myself lucky. I immediately went to a Specialist (who had the personality of a seal) here in Bendigo when I was diagnosed, who happily booked me in for a Fibroscan at the RMH (which I didn’t have to pay for) so when I spoke with Dr Freeman I had all my results…….just a footnote, I am still waiting for an appt at the Bendigo Base at the Liver Clinic (18 month wait they tell be so I only have 10 months to go)…in which time I hope to be able to ring and tell them not to bother, take me off the list because I am cured!

    I hope you are able to get your answers 2b…very frustrating for you.


    YMMV

    #5493
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Hi Lynn,

    I suspect that it will be a 12 month rolling calendar for the tests but you will still be entitled to 4 qualitative tests as explained by Dr James below. So you won’t know the amount of RNA on those but if it’s UNDetected then they can’t count it anyway. So once you achieve UND that will be the result that you are given for either test so no point to to doing the qauntitative test then.

    In the worst case that you still have significant load at 4 weeks then you could always do one at your own expense (under $200) at 8 weeks but as the Dr. says, all the 12 week results have been UND so far anyway.

    http://fixhepc.com/forum/experts-corner/364-viral-load-quantitative-vs-qualitative.html


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #5495
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    well one of these days, when I get to speak to the Dr, i am sure going to ask what the ” 33.9 ” is supposed to denote


    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    #5498
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Thanks GAJ although I’m not clear on the difference between the two tests…..I am assuming that the Viral Load test my Doctor has asked for will be the one that hopefully comes back “UND”……not medically minded I’m afraid…I’m sure my GP knows what he is doing :ohmy:


    YMMV

    #5499
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Ah, okay.

    Qualitative – just tests whether RNA is present or not. (Yes/No?)

    Quantitative – tests whether RNA is present and if so measures how much. (Yes/No? + How much?)

    If you have already had an UNDetected/No result then there is no point trying to count how much because the answer is “none”. So you just need the Qualitative from then on to make sure it hasn’t come back. And assuming you keep getting that UNDetected result post treatment then at 24 weeks after finishing treatment you are considered cured with almost zero chance of it coming back. As the Doc says “the Gold standard”! :)

    But so far even those who still had some RNA detected at 4 weeks have all been UNDetected at 12 weeks. Which is what you want.


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

    #5500
    Avatar photoklhilde
    • Guardian Angel
    • ★★★★★
    @klhilde

    Hey 2b, how long sgo did you get the blood drawn?

    The reason I ask is that I had mine drawn last Tuesday. I checked the Patient Portal a couple days later and I could see every test ordered and that results weren’t in yet. I checked again later, late night Thursday I believe, and the results were in, except the Quantitative test, which was not showing up at all. (It had been there earlier.)

    Checked again Friday and no change so I called the clinic. Got a call back a couple hours later, was told that the Quantitative was sent out so would take longer, expect it on Monday.

    Looked online late Sunday night.

    Both of my providers, one in Washington State and the other in part of America’s third world … western North Dakota … have online patient access to all reports, tests, etc. If anyone out there in a first world country does not have full, complete online access to all of your own records you should be raising hell. This isn’t 1990.

    #5502
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    Hi K, I got it drawn last thursday and online results appeared today, for all the tests EXCEPT the viral load test which is the one I was really wanting to see of course. I can’t imagine a good reason why the viral load would take that much longer than the others, and the explanation i got was vague…”we’re looking into it”.

    So, I had online access to the results, just no viral load test results…nothing, like it never happened, just the stupid antibody test with the mysterious reference number saying my “value” was ” 33.9 “,whatever that’s supposed to mean….I’ll be on em tmw again about my VL load test they promised they were doing.


    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    #5503
    Avatar photo2b
    • Guardian Angel
    • ★★★★★
    @2b

    but CONGRATS on the UnDETECTED….WOW, well since they said your load test took longer maybe mine too, you got yours drawn tuesday, I got mine drawn thursday so maybe its still coming.

    must feel good to see that result after all the travels and trials you went through across the world to get your meds.
    every day I get up, I can’t wait to take my two little pills and hope they are kicking ass in there!


    GT 2b; since 80’s, no prior tx, sofosbuvir and daclatasvir compounded from API’s at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. I feel GOOD!! I knew that I WOULD!””

    #5504
    Avatar photoklhilde
    • Guardian Angel
    • ★★★★★
    @klhilde

    Well, I wouldn’t be surprised if they also had to send it out for analysis like my clinic did. That will add two days or so, so I bet you’ll get it within two days.

    #5506
    Avatar photoChester
    • Guardian Angel
    • ★★★★★
    @chester

    Good news Kev. Glad it was all worth it. Kick back and relax and enjoy the UND to eot and hopefully beyond.

    #5511
    avatar876.jpegGaj
    • Guardian Angel
    • ★★★★★
    @gaj

    Congratulations, klhilde!

    Great result, you must be very happy.

    (Quick result on VL test compared to Aust. Ours can take a week and a half. I’ve been told I will be very, very lucky if my 16th Dec test result is available pre Xmas) :(


    G3a since ’78 – Dx ’12 – F4 (2xHCC)
    24wk Tx – PEG/Riba/Dac 2013 relapsed
    24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
    16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
    SVR7 – 22/06/17 UND
    SRV12 – 27/07/17 UND
    SVR24 – 26/10/17 UND
    :cheer: :cheer: :cheer:

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