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Author Topic: Help! Just got Fibrotest Results and Scared....What do I do Now?  (Read 6478 times)

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Offline CureHep2019

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  • Posts: 3
Help! Just got Fibrotest Results and Scared....What do I do Now?
« on: December 06, 2019, 07:13:51 pm »
Hello. I'm new here. I contracted Hep C from a blood transfusion in 1978. Was diagnosed in 2004.

Genotype 1B. 

I've had (2) biopsies, (2) FibroSpect II Tests and (1) Fibrotest Actitest. 

SEE RESULTS OF EACH BELOW.

BIOPSY RESULTS:
Biopsy 2004 - Stage 0
Biopsy 2010 - Stage 1

FibroSpect Tests Results:
2010 - F0-F1 - Fibrospect Index II  Metavir Score "16"
2014 - F0-F1 - Fibrospect Index II Metavir Score "25"

Fibrotest Actitest Results:
2019 - Fibrosis Stage - F1-F2 Metavir Score "35" - minimal fibrosis
           Hep C Activity - A1-A2 Metavir Score "39" - minimal fibrosis

I'M SO SCARED! IS THIS BAD!  :-[

Can i get CANCER now from this? :(

Has anyone had same results or similar and treated? Do I need to start treatment? Or do I have time??

What medication did you use (Harvoni, Mavyret, Daklinza, Epclusa, Zepatier, etc.)?

Side effects?

Please Help! Thank you in advance  :)
1978 Contracted Hep C  from Blood Transfusion
Diagnosed: 2004
Genotype: 1b
2004 - Biopsy - Stage 0
2010 – 2nd Biopsy - Stage 1
2010 – Fibrospect Test - F0-F1 Metavir Score "16"
2014 -  Fibrospect Test -F0-F1 - Metavir Score "25"
2019 – Fibrotest Actitest - Fibrosis Stage - F1-F2
                            Metavir Score "35" - minimal fibrosis
            Fibrotest Acitest Activity - A1-A2
                            Metavir Score "39" - minimal fibrosis
GOING TO START TREATMENT 1/2020

Offline Lynn K

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  • Member
  • Posts: 4,509
  • Get tested, get treated, get cured, fight Hep c!
Re: Help! Just got Fibrotest Results and Scared....What do I do Now?
« Reply #1 on: December 06, 2019, 08:31:04 pm »
So number one you have only minimal liver scaring with cure of hep c your liver will very likely heal to a score similar to people who never had hep c. Since you don’t have a scarring level of F4 (cirrhosis) it is very unlikely you are at risk of liver cancer. In general you must have a fibrosis score of F4 to be at risk of HCC.

I likely had hep c for 37 years before I was finally cured on my fifth treatment. I had three tries using interferon based treatment. I was diagnosed with cirrhosis (F4) after being infected for probably 30 years. That was in January 2008 so I have been living with cirrhosis for 12 years now.

As far as which treatment your doctor will make that determination based on your having genotype 1b not previously treated and without cirrhosis and possibly also what your insurance will approve.

Current treatment recommendations from the AASLD for genotype 1b, treatment naive, without cirrhosis are Mavyret for 8 weeks, Zepatier for 12 weeks or Harvoni also for 12 weeks. There are several other possible treatments.

Most people have little to no side effects from treatment the most commonly reported being mild headaches which can be possible prevented by keeping properly hydrated the old 8 each eight ounce glasses of water or other fluids daily that we all should be drinking daily anyway.

Best of luck on treatment you will be cured soon and will be able to put all this behind 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 CureHep2019

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  • Posts: 3
Re: Help! Just got Fibrotest Results and Scared....What do I do Now?
« Reply #2 on: December 06, 2019, 10:40:30 pm »
@LynnK  Thank you so much for this information.  Its just so scary.

Also do you know of any long term side effects of any of the treatment meds?

I read somewhere that someone got cancer from Harvoni??
« Last Edit: December 06, 2019, 10:43:20 pm by CureHep2019 »
1978 Contracted Hep C  from Blood Transfusion
Diagnosed: 2004
Genotype: 1b
2004 - Biopsy - Stage 0
2010 – 2nd Biopsy - Stage 1
2010 – Fibrospect Test - F0-F1 Metavir Score "16"
2014 -  Fibrospect Test -F0-F1 - Metavir Score "25"
2019 – Fibrotest Actitest - Fibrosis Stage - F1-F2
                            Metavir Score "35" - minimal fibrosis
            Fibrotest Acitest Activity - A1-A2
                            Metavir Score "39" - minimal fibrosis
GOING TO START TREATMENT 1/2020

Offline Lynn K

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  • Member
  • Posts: 4,509
  • Get tested, get treated, get cured, fight Hep c!
Re: Help! Just got Fibrotest Results and Scared....What do I do Now?
« Reply #3 on: December 06, 2019, 10:52:57 pm »
No one got cancer from Harvoni. There was one very distraught person who’s mom had advanced liver disease and cirrhosis who even though she was cured of hep c she developed liver cancer because she still had cirrhosis. Sadly this person blamed his moms HCC on Harvoni instead of his moms advanced liver disease. There is no evidence hep c treatment causes liver cancer. In fact, mountains of data show that curing hep c in those with advanced liver disease and cirrhosis greatly reduces the odds of HCC.

And you are not at any risk as you are only F1

While there are a few who have complained of long term side effects there currently isn’t any data corroborating these anecdotal stories.

The vast majority of people have little difficulty with treatment and any after effects. Don’t borrow trouble and worry from a tomorrow that will very likely never occur.
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 Mugwump

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  • Posts: 775
  • My number of posts means nothing, piscor ergo sum!
Re: Help! Just got Fibrotest Results and Scared....What do I do Now?
« Reply #4 on: December 07, 2019, 05:41:52 am »
You will find that a specialist will be more concerned with your blood work. Unless you have progressed to F4 and have complications from cirrhosis. The treatments are all very easy today and by and large the numbers who have little to no side effects are much greater than those who experience troubles.


If you pay careful attention to your hydration, diet and exercise during treatment I am sure you will do just fine.


I was F4 prior to treatment and was lucky enough to have been treated in time to have my fibrosis score reduce to one that is similar to your current score.
I did experience some mild side effects during and after treatment like myalgia but they were short lived and could be relieved by sensible exercise.


Other people have experienced changes that seem to be immune related. But this makes some sense in that the liver has to heal rapidly as HCV leaves and it may well be that the human immune system needs time to adjust to the rapid changes curing HCV creates.


Studies to date have not indicated that other diseases are triggered by treating HCV even though the internet is rife with tales of woe the truth is that taking a direct acting antiviral to cure HCV does not cause other diseases.
The only exception is that in rare case of those co-infected with HBV a flare up can occur and this is exactly why you need to talk this treatment through with your doctor(s) and take an active part in understanding all the stages and tests that are necessary.


I am sure your doctor will let you know these things and you will get the right treatment for your circumstances.


All the best
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline CureHep2019

  • Member
  • Posts: 3
Re: Help! Just got Fibrotest Results and Scared....What do I do Now?
« Reply #5 on: December 08, 2019, 02:26:55 am »
Mugwump,

Thank you for the info.. can i ask what treatment you did? your genotype, etc.

T
1978 Contracted Hep C  from Blood Transfusion
Diagnosed: 2004
Genotype: 1b
2004 - Biopsy - Stage 0
2010 – 2nd Biopsy - Stage 1
2010 – Fibrospect Test - F0-F1 Metavir Score "16"
2014 -  Fibrospect Test -F0-F1 - Metavir Score "25"
2019 – Fibrotest Actitest - Fibrosis Stage - F1-F2
                            Metavir Score "35" - minimal fibrosis
            Fibrotest Acitest Activity - A1-A2
                            Metavir Score "39" - minimal fibrosis
GOING TO START TREATMENT 1/2020

Offline Mugwump

  • Member
  • Posts: 775
  • My number of posts means nothing, piscor ergo sum!
Re: Help! Just got Fibrotest Results and Scared....What do I do Now?
« Reply #6 on: December 08, 2019, 05:26:38 am »
I was genotype 1a. And my treatment was a full 24 weeks of Harvoni just one week after it was approved in Canada. This was because of a cirrhosis diagnosis and a previous history of treatment with interferon in 2003. Your treatment will most likely be only 12 weeks with no cirrhosis or previous history of treatment.


Genotype 1a and 1b are similar in treatment regime. When you have a viral load test done it can be all over the map and the levels of virus currently circulating in your blood does not mean as much as how well your liver is doing currently.


The doctors prescribe the treatment regime call based upon;
1. the current level of viral load,
2. your treatment history
3. the current state of your liver enzymes (blood work profile)
4. your level of liver damage. (metavir score)


As the specialist that treated me said; "the current viral load and liver enzyme readings only indicate how well you are fighting the disease right now, tomorrow it can all change for worse or better"


So all good specialists seem to agree that leaving HCV untreated is a dangerous crap shoot. You might very well never progress to full blown cirrhosis or develop HCC or other complications. But why go around the rest of your life worrying about it happening? And much worse worrying about the possibility of accidentally infecting someone else no matter how slight the odds are of that happening?


Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

 


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