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Author Topic: Good News Bad labs  (Read 8916 times)

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Offline I fightis thetitis

  • Member
  • Posts: 129
Good News Bad labs
« on: October 28, 2016, 03:45:27 am »
Hi Friends,
Anyone have similar report. Got my 24 week eot undetected.. yeah! Cured right?
However, I have had noticeable, non stop liver pain for the last two weeks. Told Dr who said "You should not be having Liver pain" He ordered Comp CBC test and Total Billrubin came back elevated at 1.5 (0.2-1.2 is normal range, spiked 6 points since august) and low Albumin.
Which indicates cirrohsis..

So even though I have cleared virus it appears F4 (cirrhosis) may be complicating health/liver recovery.
Ultrasound was all clear in August.. but he ordered another one and mentioned "the new studies and reports of increase of HCC after DAA and SVR, both recurrence and occurrence, along with Liver pain are enough concern to monitor me close." 
So the good news comes with a caveat..
I am curious if any others have or know of similar situation.

Best to all of you,

Greg
« Last Edit: October 28, 2016, 10:22:11 am by I fightis thetitis »
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Good News Bad labs
« Reply #1 on: October 28, 2016, 02:10:18 pm »
Greg, very sorry about your liver pain. No liver pain here, but my last (mid-May) ultrasound is the only one I've ever had that mentioned "mildly coarsened . . . liver." Because my pre-Harvoni FibroScan came out F4, I get an ultrasound every 6 months --the next one will be mid-November.

Let's hope you won't need this information, but my hepatologist mentioned that liver CA caught early is easily treatable.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Good News Bad labs
« Reply #2 on: October 28, 2016, 09:08:42 pm »
So very sorry. These stories are all too common and heartbreaking.
The post-treatment increased risk of HCC only applied to those who had previous HCC, and those studies have been questioned to the point that most experts dismiss the risk completely. BUT, the risk of HCC is always there with cirrhosis, regardless of treatment, and unless your liver regenerates back to a lower fibrosis score, you will need to be monitored with imaging studies every 6 months. Post- treatment regeneration may take up to 2 years, but doesn't always happen. I hope you are one of the lucky ones.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Good News Bad labs
« Reply #3 on: October 29, 2016, 03:22:03 am »
Thank you Lucinda and Gnatty,

Your knowledge and understanding is appreciated very much!
Update: I went to the emergency room this eve bc my anxiety over the wait for the next ultrasound was too much and the pain is persistent.

BYW, Hoag Hospital in Newport Beach ca is by far the best patient care, state of the art facility I have ever seen. What a difference being around quality Dr's can make.
I received A+ care and the emergency DR really new her GI stuff. She new exactly what to look for and started ruling things out. And she really cared!
Side note: she had treated emerg/varc bleeds before from Hep C and Cirrhotic patients. 
They drew blood and really took extra time with me.
I received a thorough 30 min + ultrasound as they were looking for lesions or a mass that might be in a tough location that the August UltraS might have missed..
Good news they found nothing and my labs came back normal for the most part.

She ruled out Gall Bladder and ran more test, amonia, Lipase, urine ect.
Conclusion: because I cycle 3 x's a week she thinks it could be musculature or ribs.
Personally I believe it's something else that the Ultra cannot pick up (yet?) bc it's real and it's right at my F4 liver. I know liver pain.

So if your insurance covers and you can't wait for an ultraS it's comforting to know they have great people at the ER.

My best to everyone,

Greg
 
« Last Edit: October 29, 2016, 03:23:50 am by I fightis thetitis »
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Good News Bad labs
« Reply #4 on: October 29, 2016, 10:27:56 pm »
I was dx with liver cirrhosis Jan 2008 with liver biopsy after being followed closely since my hep c diagnosis 1990.

I had a Fibroscan in Oct 2014 in case my insurance needed a more recent test than the 2008 biopsy. My Fibroscan score was 27.

Personally I have never had any liver pain. My understand is the liver has no pain nerve endings but there are membrane that surrounds all organs including the liver and that membrane does have pain receptor nerves which can transmit pain signals due to things like the liver being enlarged as it can be with cirrhosis due to liver inflammation.

I get a liver ultrasound along with liver function, CBC and AFP testing every 6 months I also have an annual upper endoscopy to monitor for esophageal varicies as I had grade 3 varicies in 2012 that needed banding to prevent a bleeding event. I see my liver specialist every year. I assume I will be followed this way for the rest of my live to watch for early signs of liver cancer.

Best of luck to you
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: Good News Bad labs
« Reply #5 on: November 02, 2016, 02:32:21 am »
Thanks Lynn,

Good luck and I bet your Liver is healing every day.

Cheers,
Greg

M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Good News Bad labs
« Reply #6 on: November 02, 2016, 02:43:47 am »
Thanks Greg

So far my platelet count is slightly lower than when I finished treatment and my Fibroscan that was 27 before treatment was 33 one year post so not really seeing evidence of improvement. But i am doing ok with what liver I have so as long as I don't get liver cancer I think the status quo with my liver is fine by me

Best to you
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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