Home › Forums › Main Forum › Patient Stories › Starting tx tomorrow night

Viewing 15 posts - 16 through 30 (of 39 total)
1 2 3
  • Author
    Posts
  • 10 April 2018 at 11:34 am #27801
    Avatar photocoral
    • Guardian Angel
    • ★★★★★
    @coral

    Hi Sharmon,

    Sorry to hear about those frustrations in relation to testing. I remember how important those test results were to me when I was under treatment. Hang in there…..

    11 April 2018 at 12:26 am #27805
    SHarmon
    • Topics: 4
    • Replies: 37
    • Total: 41
    • Recovery Champion
    • ★★★★
    @sharmon

    Everywhere in Canada EXCEPT Ontario they take the RNA test seriously. They had to hire 2 extra lab technicians 2 months ago when the backlog surpassed 4 weeks on average. Rather than open up a new facility (blood testing will not go away any time soon) . They just gave the same lab more money to hire more people to keep the minimum for testing baseline. The general bloodwork labs are the same in this province (3 different labs) and each gets a specified amount of testing and it doesn’t change so they have no reason to improve service or testing quality because they already bought their share of the testing 6 years ago and they will not get any more customers , money or contracts in the future.

    11 April 2018 at 2:17 am #27806
    Songbird
    • Topics: 2
    • Replies: 63
    • Total: 65
    • Recovery Champion
    • ★★★★
    @songbird

    You say: ” Everywhere in Canada EXCEPT Ontario they take the RNA test seriously.”

    I beg to differ. Please peruse my previous post above and I live in the great province of Ontario.

    Best to you..

    S

    Diagnosed: 2001 GT1a , HCV since mid-70’s.
    Biopsy 2010 F1
    Fibroscan and Fibrosure 2018 F2

    Treated in trial 2010 with Dac/Peg/ Riba and Relapsed.

    Resistance test 2017. Have Ns5a Rav Q30r/H58d enhanced from doing Dac.

    Start Tx. Jan 18th/18 w/ Vosevi /Riba 12wks. plus 6 wks.Viekira Pak +Sof/Riba(From Dr Freeman @GP2U)

    VL start: 1.6mill.ALT 125 AST 88
    Wk. 4 Det @LLOQ <15.
    VL Wk.8 UND Alt &Ast 22
    Wk. 12 UND
    EOT:UND

    EOT+12 >>>UND (SVR12)! ALT11 AST13
    Nov6/18 SVR 24!

    11 April 2018 at 3:38 am #27807
    SHarmon
    • Topics: 4
    • Replies: 37
    • Total: 41
    • Recovery Champion
    • ★★★★
    @sharmon

    I advised 4 past sexual partners to get tested and 2 from Quebec and 1 from Alberta and 1 from BC received their results within 10 days of testing. Alberta tests for HVC/B antibodies as part of their standard full screening. I love where I live now and have lived from coast to coast over the years , crime rates , culture , employment can’t be beat. Not the same can be said about the medical system here. eHealth was a nepotistic program that took 1 billion dollars out of the system and I have worked in a large francophone chain of clinics and the doctors had to go to battle against OPH in about 1/10 cases. My doctor was told today that when the result is low or <15 they save them up for a batch transfer that can take 3-4 weeks after the results come back to amass enough to send. He practically had to demand that they send him the results by the end of this week.

    The lab hires two medical clerks to do the results transfer electronically 2 times per month unless the infection is possibly acute.

    11 April 2018 at 3:31 pm #27809
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    Hi Songbird, having a world famous professor treating you probably helps!

    YMMV

    11 April 2018 at 8:46 pm #27810
    Songbird
    • Topics: 2
    • Replies: 63
    • Total: 65
    • Recovery Champion
    • ★★★★
    @songbird

    Hi Doctor,

    Possibly…….however I don’t believe that is the case. I am treated at a very large clinic where there are many doctors treating HCV and my doctor is not the head of that dept.

    I have had many occasions to chat with fellow patients about how they are doing ,where they are at in the process and we have discussed many times how our tests are going

    Their experiences are similar to mine and many are not treated by my particular doctor.

    It may be though that because this clinic is in a very large urban area and the Public health Lab (that is very close by and does this particular testing) that results are diseminated differently.

    The Poster may live in a more rural area and possibly things are handled differently there.

    In any event I wish you well Sharmon with this. As others have mentioned it must be frustrating waiting for results for these crucial tests .

    Good luck

    S

    Diagnosed: 2001 GT1a , HCV since mid-70’s.
    Biopsy 2010 F1
    Fibroscan and Fibrosure 2018 F2

    Treated in trial 2010 with Dac/Peg/ Riba and Relapsed.

    Resistance test 2017. Have Ns5a Rav Q30r/H58d enhanced from doing Dac.

    Start Tx. Jan 18th/18 w/ Vosevi /Riba 12wks. plus 6 wks.Viekira Pak +Sof/Riba(From Dr Freeman @GP2U)

    VL start: 1.6mill.ALT 125 AST 88
    Wk. 4 Det @LLOQ <15.
    VL Wk.8 UND Alt &Ast 22
    Wk. 12 UND
    EOT:UND

    EOT+12 >>>UND (SVR12)! ALT11 AST13
    Nov6/18 SVR 24!

    19 April 2018 at 1:15 am #27864
    SHarmon
    • Topics: 4
    • Replies: 37
    • Total: 41
    • Recovery Champion
    • ★★★★
    @sharmon

    Ontario Public Health does NOT return any results if a serum test returns less than 15 IU/mL and if a dried blood spot test is less than 500 IU/mL. Basically good luck with your treatment but they don’t have time to return all results. This is from a receptionist at OPH and from their official website.

    https://www.publichealthontario.ca/en/ServicesAndTools/LaboratoryServices/Pages/Hepatitis_C_RNA.aspx

    I guess I will have to get it done privately in the US , Canada doesn’t care.

    19 April 2018 at 11:14 pm #27874
    Songbird
    • Topics: 2
    • Replies: 63
    • Total: 65
    • Recovery Champion
    • ★★★★
    @songbird

    Hello Sharmon,

    I understand you are frustrated with not being able to garner your results,however I believe your frustration is focused in the wrong spot(The Public Health Lab)

    The link you added to your post from the Public Health Dept. and what you have interpreted from it seems to be incorrect.

    You say that they do not send results that show <15 iu/ml or <500iu/ml on a DBS.

    Your misinterpretation of that is in the fact that they put that in the "Results Information" and how they then send that off to the doctor who ordered the test.

    In other words if a result is <15iu/ml they can not give an exact Viral load #. they will just say DET. <15 as they are unable to quantify it below 15. It has nothing to do with them not sending the result to the Doctor.
    Also ,this particular lab will say HCV Not Detected if they can not see any virus whatsoever.

    However ,again it has nothing to do them not sending results out. They send results out in Ontario in between 4-10 days depending on their volume of tests to run.

    I would be contacting my Dr. if I was you and ask him to pass on your results to you (that is if he/she ran them when you think they did) and get this cleared up with them before you go off spending all kinds of money to get the same test done in the U.S.

    Your response that Canada doesn't care about running these tests and getting them to the doctors in a timely fashion ,in my humble opinion is just incorrect.

    Best of luck with all this

    S

    Diagnosed: 2001 GT1a , HCV since mid-70’s.
    Biopsy 2010 F1
    Fibroscan and Fibrosure 2018 F2

    Treated in trial 2010 with Dac/Peg/ Riba and Relapsed.

    Resistance test 2017. Have Ns5a Rav Q30r/H58d enhanced from doing Dac.

    Start Tx. Jan 18th/18 w/ Vosevi /Riba 12wks. plus 6 wks.Viekira Pak +Sof/Riba(From Dr Freeman @GP2U)

    VL start: 1.6mill.ALT 125 AST 88
    Wk. 4 Det @LLOQ <15.
    VL Wk.8 UND Alt &Ast 22
    Wk. 12 UND
    EOT:UND

    EOT+12 >>>UND (SVR12)! ALT11 AST13
    Nov6/18 SVR 24!

    20 April 2018 at 2:58 pm #27882
    SHarmon
    • Topics: 4
    • Replies: 37
    • Total: 41
    • Recovery Champion
    • ★★★★
    @sharmon

    This is what the Doctor said was told to him when he called to ask where the results were last Friday. I took the test on the 19th of March and unless the patient is enrolled in an OPH sponsored treatment plan they do not file any result less than 15 for serum/plasma greater than 2.5 mL samples and less that 1000 IU/mL for DBS samples.

    20 April 2018 at 6:47 pm #27883
    Songbird
    • Topics: 2
    • Replies: 63
    • Total: 65
    • Recovery Champion
    • ★★★★
    @songbird

    Hi Sharmon,

    I am not familiar with OPH unless you mean the OHIP (Ontario Health Insurance Plan). Every resident of Ontario is registered under the plan and has a card with the OHIP # which then allows you access to most health care procedures (appoints,tests etc) Do you not have this ?

    S

    Diagnosed: 2001 GT1a , HCV since mid-70’s.
    Biopsy 2010 F1
    Fibroscan and Fibrosure 2018 F2

    Treated in trial 2010 with Dac/Peg/ Riba and Relapsed.

    Resistance test 2017. Have Ns5a Rav Q30r/H58d enhanced from doing Dac.

    Start Tx. Jan 18th/18 w/ Vosevi /Riba 12wks. plus 6 wks.Viekira Pak +Sof/Riba(From Dr Freeman @GP2U)

    VL start: 1.6mill.ALT 125 AST 88
    Wk. 4 Det @LLOQ <15.
    VL Wk.8 UND Alt &Ast 22
    Wk. 12 UND
    EOT:UND

    EOT+12 >>>UND (SVR12)! ALT11 AST13
    Nov6/18 SVR 24!

    20 April 2018 at 11:24 pm #27884
    SHarmon
    • Topics: 4
    • Replies: 37
    • Total: 41
    • Recovery Champion
    • ★★★★
    @sharmon

    I have private insurance as well I am covered by OHIP (Ontario Health Insurance Program) and you cannot receive anything but emergency health services in Ontario without an OHIP card. The problen lies with OPH (Ontario Public Health) which is the Canadian equivalent of the CDC. They force all Doctors within the OMA (Ontario Medical Association) to use one specific lab for ALL HIV and HVA/B/C testing in Ontario creating an enormous backlog. My Doctor phoned them again today and they said I will need to be retested because they do not store results less than 15 IU/mL in their system. Ontario seems to think that less than 15 means that the person isn’t infected anymore or they can’t be bothered because even if they mess up they are guaranteed the business by the government . Liquor and marijuana also work the same here where the government gives the job of selling to the public to one seller and throws everyone who tries to sell it in jail. Even collecting blood samples is only permitted by 3 businesses in Ontario where each is given a certain percentage depending on how much they pay the government. I am not an activist of any kind and am only stating facts that are publicly known and agreed upon. If I had lived 12 KMS to the north in Quebec I would have had the results more than 2 weeks ago.

    21 April 2018 at 3:08 am #27887
    Songbird
    • Topics: 2
    • Replies: 63
    • Total: 65
    • Recovery Champion
    • ★★★★
    @songbird

    Well Sharmon,,as this is a support forum(and one of the better ones I may add) I am not prepared to go back and forth with you on this anymore

    Just a couple of things before I close out on this thread

    I am very familiar with PHO (Public Health Ontario). When you stated you contacted OHP I thought you were possibly meaning OHIP ,however it was just that you transposed the letters.

    Your last post is incorrect at a number of points You say 1) the lab does not store results <15iu/ml .
    2) That Ontario seems to think that <15iu/ml isn't infected anymore and 3) that they do not report these results to the ordering Dr.

    This is the PHO form to Doctors on what they provide:

    HCV RNA Result Interpretation Comments
    Detected Hepatitis C RNA
    detected, <15 IU/mL
    The result for HCV RNA is below the linear range of the
    assay, and thus the exact value cannot be calculated
    Not detected No detectable
    Hepatitis C RNA
    Refer to comments on laboratory report if follow-up
    testing is required
    2. Hepatitis C Genotype
    Clinical Utility
    Genotyping of HCV is useful in evaluating the likelihood of response to currently available antiviral therapy.
    ------------------------------------------------------------------------------
    One of the reasons I have responded here Sharmon is to possibly be of some help to you with advice as I have been involved with the medical system for approx. 60yrs in Ontario,20 of those involved with testing my HCV in various forms (RNA's ,viral loads done while treating,4 of which were done in the last 3 months ,resistance testing and more ) All done by PHO and results deciminated in a timely fashion.

    The other reason I am responding is because I imagine there are a number of folks on this forum from Canada(Ontario in particular) thinking of treating and they should know that their testing will be done in a timely fashion and sent to their doctor when ordered.

    I honestly don't know what the problem is with your particular tests however others should know reading your posts that it is certainly not the norm in Ontario

    Again.. I wish you the best in this.

    S

    Diagnosed: 2001 GT1a , HCV since mid-70’s.
    Biopsy 2010 F1
    Fibroscan and Fibrosure 2018 F2

    Treated in trial 2010 with Dac/Peg/ Riba and Relapsed.

    Resistance test 2017. Have Ns5a Rav Q30r/H58d enhanced from doing Dac.

    Start Tx. Jan 18th/18 w/ Vosevi /Riba 12wks. plus 6 wks.Viekira Pak +Sof/Riba(From Dr Freeman @GP2U)

    VL start: 1.6mill.ALT 125 AST 88
    Wk. 4 Det @LLOQ <15.
    VL Wk.8 UND Alt &Ast 22
    Wk. 12 UND
    EOT:UND

    EOT+12 >>>UND (SVR12)! ALT11 AST13
    Nov6/18 SVR 24!

    21 April 2018 at 4:11 am #27888
    SHarmon
    • Topics: 4
    • Replies: 37
    • Total: 41
    • Recovery Champion
    • ★★★★
    @sharmon

    Thank you ,

    I am aware that there isn’t much of a possibility that my situation is the norm. My private insurance has agree to cover a single RNA test in Quebec that will be collected on Monday morning and results will be in the Doctors office by next Friday before end of business.

    Ontario stills says to retake the test so my Doctor got fed up and found a laboratory in Quebec that will collect and run the same assay test but it will cost 312$ CAD that my insurance will cover minus a 12.50$ co-pay. I am good with that and have given up on Ontario.

    26 April 2018 at 5:54 pm #27905
    SHarmon
    • Topics: 4
    • Replies: 37
    • Total: 41
    • Recovery Champion
    • ★★★★
    @sharmon

    My Doctor and Dynacare went completely above and beyond this time. He decided to try PHO one more time but he had me get the blood sample at Dynacare and they held 3 X 5.0 mL vials prepped (2 required for this test) and frozen. He then contacted PHO and faxed them the three sheet RNA requisition and had them sign off on it as approved and complete. Dynacare then released the samples and the known good forms the next morning. ALT , AST , Ferritin and CBC were included with the RNA PCR and set as 8 weeks into treatment which was listed as Harvoni. Lets see what happens now :)

    Addendum :

    Doctor phoned me to say platelet count is 84X10*9 and my doctor wants me to go for another CBC in 7 days and give me a shot of vitamin K if it drops lower and then a platelet transfusion at EOT. The vitamin K won’t affect the treatment ?

    27 April 2018 at 8:22 am #27910
    dope-on-a-rope.jpgDr James
    • Guardian Angel
    • ★★★★★
    @fixhepc

    The suggestion to take Vitamin K for low platelets is unusual. If you are deficient fine, but if you have normal levels (from a normal diet and having not had antibiotics to kill your gut bacteria – these make about 50% of it for you) it will not do anything. The main role of vitamin K is in the clotting cascade so it may relate to you having an elevated INR. Vitamin K is fat soluble so you can get too much in and it is not excreted out like excess water-soluble vitamins so tends to be a “handle with care” injection.

    While 84 platelets is lower than the usual low limit of normal of 140-150 (depends on the country) it is routinely low for patients with Hep C and not at all at worrying levels. I have patients with platelets in the range 10-30 which is worrying. Above 50 is enough and I would get an automatic rejection from the lab for a request for platelets for anyone with levels over 50. The platelets themselves have a 7 day lifespan so it makes very little useful difference, for a very short period of time if you give them to patients. It’s usually done to either patch over a short term issue, or to keep people alive who run platelets consistently <50 and have life-threatening bleeding.

    Here are the British recommendations on platelet transfusion - you may note they use below 10-20 as the yes/no decision point. Your 84 is technically low, but not "we just gotta do something to fix this low"

    https://onlinelibrary.wiley.com/doi/full/10.1111/bjh.14423

    YMMV

  • Author
    Posts
Viewing 15 posts - 16 through 30 (of 39 total)
1 2 3
  • You must be logged in to reply to this topic.