Hi, good to see you, boy that must be frustrating to have a PCP take the wrong tests, seriuosly...sometimes I think they don't listen to us at all.
Best wishes on obtaining pregnancy!
Bb, Iris
Canuck said
Jul 31, 2018
Hey dtre,
Ya, now that's more like it. Further decreases happened in your LFT's, ALP, it just took a while eh?
I am wondering a couple other things, one time you came and asked about trying to get in a NASH trial, and long, long time ago you and Mallani were chatting about your fibroscan, low fibroscore and fatty livers, etc. Did you ever have more fibroscans to better assess, or to continue to assess your Fscore (perhaps you have had more U/S's? that show improvements in a thought "fatty" liver?). Would be interesting to know if you are still the same as before on those fronts - a vague reference to perhaps a fatty liver and a low Fscore.
I guess we can chalk the lowish platelets up to an long-term effect of the chemo? What were your normal platelets (prior to dx and tx of the colon cancer)? Also, I wonder about how long, intensive your chemo was - how many rounds, how often, for how long - was this treatment coupled with surgery and/or radiation? I am glad you got rid of it. I imagine you are a frequent flyer for follow-up (to keep an eye on all things bowel, and as well, all things hep/liver, all GI really)!
You (and your wife) will have been extra busy with docs now, what with delving into IVF! I wishing you both the best of luck. C.
Tig said
Jul 30, 2018
Those are very good numbers! While your platelets are low, they are still acceptable. I have seen them half that number during the old standards of care here on the forum. Like the chemo you went through, the drugs we used just a few years ago imparted the same thing on our platelets. Hopefully you’ll see continued improvement in the future!
dtre30319 said
Jul 30, 2018
Hey Guru, Glad you asked. My labs look great with the exception of my platelets being low from the chemo in 2015. My updated lates are below:
bilirbin, total 0.6
alkaline phosphatase 69 AST 32 ALT 35 Albumin 4.8 albumin /globulin ratio 1.5 PLATELET 99 * ( ! )
Canuck said
Jul 30, 2018
Hi dtre,
Congrats again on your very hard-won cure.
Nice you and your wife are trying to do IVF, I wish you all the luck with that.
What ever happened about you running higher than norm LFT's (ALT's and AS'T's persistently higher than you were comfortable with) long after cure. You doc came up with "it just may take more time" ... so, is he becoming right?, what were your LFT's this time?
Glad to see a post and update from you. C.
dtre30319 said
Jul 29, 2018
Hello Tig, Thanks for the notice. I hope you are well and are in good spirits. My wife and I are currently going through IVF and needed the results for our reproductive doctor. Thankfully, the reproductive doctor is more knowledgeable about hep c testing than my PCP and will perform his own test. I immediately got another PCP as it took this one three weeks to respond to basic lab results. I knew something was strange when she responded and said everything looks great except your hep c which showed positive antibodies. During my physical exam, I looked her dead in her eyes and said I will always show antibodies for hep c so you have to do the quant test and she assured me she was very familiar with what test to run.
Tig said
Jul 29, 2018
Not to worry. I have had two PCP's do the exact same thing and I got the phone call that I had tested positive for Hep C and to see a Hepatologist for further testing. Good grief! I understand your shock and frustration, but don't be concerned. Even after we clear the virus and are SVR, we will ALWAYS test positive for the antibodies. Every time I go in for a Viral Load now, I make double certain the doctor, nurse and then the lab tech know, this should be for the viral load, not the Hep C antibody. I've caught them on more than one occasion and refuse that. If they have the viral load ordered, there is absolutely zero reason to have the antibodies tested for again. I've even had my insurance company bill me for the antibody test because it wasn't necessary! If you're billed for that, take the statement back to that doctor and tell them they can either pay for it, because you told them prior to the order that you informed them of your situation or deduct it from their bill.
dtre30319 said
Jul 29, 2018
Hello Everyone, Its been awhile since I have been on but I wanted to give everyone an update. I had my yearly physical with a new Primary Care doctor. I told her to run the yearly test, which should include hep c. She sends me an email saying that my hep c test came back positive and shows antibodies. Now, I'm not a rocket scientist, but I specifically told her that I previously hep c and was treated successfully with harvoini and she needed to run the Hepatitis C Viral RNA Quant by PCR test. She ran the following test instead:
Hep C Alternate Scrn - Reactive
Hep C ab 3.9 (H) range : 0.0-0.9
As usual, this put me in a state of panic and I have already put in a call to my liver specialist who runs the Hepatitis C Viral RNA Quant by PCR test every time and has been undetectable. I'm shocked that the new PCP didn't listen and run the correct test. Has anyone else experiences this? I have been hep undetectable since 2015 and I just doubt after 3 years the virus would creep up out of nowhere with no additional exposures.
-- Edited by dtre30319 on Sunday 29th of July 2018 09:25:54 PM
Best wishes on obtaining pregnancy!
Bb, Iris
Hey dtre,
Ya, now that's more like it.
Further decreases happened in your LFT's, ALP, it just took a while eh?
I am wondering a couple other things, one time you came and asked about trying to get in a NASH trial, and long, long time ago you and Mallani were chatting about your fibroscan, low fibroscore and fatty livers, etc. Did you ever have more fibroscans to better assess, or to continue to assess your Fscore (perhaps you have had more U/S's? that show improvements in a thought "fatty" liver?). Would be interesting to know if you are still the same as before on those fronts - a vague reference to perhaps a fatty liver and a low Fscore.
I guess we can chalk the lowish platelets up to an long-term effect of the chemo? What were your normal platelets (prior to dx and tx of the colon cancer)? Also, I wonder about how long, intensive your chemo was - how many rounds, how often, for how long - was this treatment coupled with surgery and/or radiation? I am glad you got rid of it. I imagine you are a frequent flyer for follow-up (to keep an eye on all things bowel, and as well, all things hep/liver, all GI really)!
You (and your wife) will have been extra busy with docs now, what with delving into IVF! I wishing you both the best of luck. C.
Those are very good numbers! While your platelets are low, they are still acceptable. I have seen them half that number during the old standards of care here on the forum. Like the chemo you went through, the drugs we used just a few years ago imparted the same thing on our platelets. Hopefully you’ll see continued improvement in the future!
Hey Guru,
Glad you asked. My labs look great with the exception of my platelets being low from the chemo in 2015. My updated lates are below:
bilirbin, total 0.6
alkaline phosphatase 69
AST 32
ALT 35
Albumin 4.8
albumin /globulin ratio 1.5
PLATELET 99 * ( ! )
Hi dtre,
Congrats again on your very hard-won cure.
Nice you and your wife are trying to do IVF, I wish you all the luck with that.
What ever happened about you running higher than norm LFT's (ALT's and AS'T's persistently higher than you were comfortable with) long after cure. You doc came up with "it just may take more time" ... so, is he becoming right?, what were your LFT's this time?
Glad to see a post and update from you.
C.
Hello Tig,
Thanks for the notice. I hope you are well and are in good spirits. My wife and I are currently going through IVF and needed the results for our reproductive doctor. Thankfully, the reproductive doctor is more knowledgeable about hep c testing than my PCP and will perform his own test. I immediately got another PCP as it took this one three weeks to respond to basic lab results. I knew something was strange when she responded and said everything looks great except your hep c which showed positive antibodies. During my physical exam, I looked her dead in her eyes and said I will always show antibodies for hep c so you have to do the quant test and she assured me she was very familiar with what test to run.
Not to worry. I have had two PCP's do the exact same thing and I got the phone call that I had tested positive for Hep C and to see a Hepatologist for further testing. Good grief! I understand your shock and frustration, but don't be concerned. Even after we clear the virus and are SVR, we will ALWAYS test positive for the antibodies. Every time I go in for a Viral Load now, I make double certain the doctor, nurse and then the lab tech know, this should be for the viral load, not the Hep C antibody. I've caught them on more than one occasion and refuse that. If they have the viral load ordered, there is absolutely zero reason to have the antibodies tested for again. I've even had my insurance company bill me for the antibody test because it wasn't necessary! If you're billed for that, take the statement back to that doctor and tell them they can either pay for it, because you told them prior to the order that you informed them of your situation or deduct it from their bill.
Hello Everyone,
Its been awhile since I have been on but I wanted to give everyone an update. I had my yearly physical with a new Primary Care doctor. I told her to run the yearly test, which should include hep c. She sends me an email saying that my hep c test came back positive and shows antibodies. Now, I'm not a rocket scientist, but I specifically told her that I previously hep c and was treated successfully with harvoini and she needed to run the Hepatitis C Viral RNA Quant by PCR test. She ran the following test instead:
Hep C Alternate Scrn - Reactive
Hep C ab 3.9 (H) range : 0.0-0.9
As usual, this put me in a state of panic and I have already put in a call to my liver specialist who runs the Hepatitis C Viral RNA Quant by PCR test every time and has been undetectable. I'm shocked that the new PCP didn't listen and run the correct test. Has anyone else experiences this? I have been hep undetectable since 2015 and I just doubt after 3 years the virus would creep up out of nowhere with no additional exposures.
-- Edited by dtre30319 on Sunday 29th of July 2018 09:25:54 PM