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Post Info TOPIC: New and confused


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New and confused
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Thank you Tig, Linuxter and Mike for your warm welcomes.

Gee Mike, what a journey you have been on. You must be a very strong and determined person to fight the decomp cirrhotic rap - all strength to you!

As it is guys, my hepatologist doesn't seem to think a biopsy at this stage - post Tx for a year - will add much more to the mix. As its an invasive test, I happy to follow his advice on that one. However, I think an MRI could be useful and I will 'lobby' my guy for that, as its another piece in the puzzle, confirming one state or the other. Obviously, I'm looking for corroboration for the non-cirrohtic test result I've 'achieved', however, when it comes down to it, I just want certainty, a new baseline, so as I can chart my progress from there. 

Thank you all for your input on my indeterminate liver status, it has been very much appreciated.

Wishing all good health and happiness smile

 



__________________

Ex-HCV G3a. Pre Tx teas results, Fibroscan 7.6; APRI F3; Ultrasounds have my liver as either cirrhotic or normal. Post Tx tests Fibroscan 3/16 4.8kpa; bloods all normal range; Ultrasound, cirrhotic. Confused!



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Hi Peri and welcome from me too.

 Since being diagnosed as F4 decompensated cirrhotic 1-2014 and F4 cirrhotic 5-2015 I've been having MRI's every 3 months to monitor a lesion on my liver for HCC and the radiologist final report always includes a comment about the liver being "cirrhotic". But a couple of the last few reports have described it as "mildly cirrhotic". MRI is not as accurate as biopsy in determining degree of fibrosis, but it is accurate enough to see improvement in fibrosis regression via series of reports over time from the same source. So long as I am having MRI's to monitor for HCC I really have no need to have a biopsy. I have achieved SVR, I treat my liver well, the lesion has drastically improved and I was reduced to MRI every 6 months now as a result of the positive progress. My lab results are now all normal too with the exception of platelets @ 74, but that continues to improve as well. A biopsy could not have made that happen any faster or better. The way I see it: Why should I worry about the exact condition of my liver or have them poke holes in it for biopsy if I know I am HCV free, doing everything possible to allow it to get healthier, it's working (according to MRI's), and that it is being monitored for HCC.

 This is just me and I understand ones desire to have an accurate assessment of their condition. I would also if I was not having MRI's done periodically.

 As mallani (Malcolm) said, "Geno 3 progresses to cirrhosis faster than other Genotypes. If you've had it for 30 years, cirrhosis is a real possibility" Fibrosis could have progressed significantly since "08". If I was geno 3 for 38 years and my ultrasound report said, "looking irregular/nodular, basically cirrhotic looking", then I would expect my doctor to investigate further with CT or MRI, and if this is confirmed then start periodic CT scans or MRI's to watch for signs of HCC. I would not be content with only ultrasounds and biopsy is not effective for detecting HCC. 

Just my 'non medical' opinion based on my own personal case. smile

 Congratulations to you on achieving SVR. When SVR involves geno 3 it's an especially big achievement.

 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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Hiya Peri,

Welcome to the forum ... We're glad you're here!

Congrats on the SVR ... Way To Go !!

 

Welcome to the Family, smile

Dave



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63yy,HCV,2b,F3-A1, Sof/Riba,12wks Tx   SOT: 1/20/16, HCV-RNA 9,816,581, ALT 56, Hb 14.6

4wk: HCV-RNA <15 Detected, ALT 15, AST 17, Hb 13.6 EOT: 4/12/16, ALT 18 , Hb 12.9176a2f85d05d9c965eafe199f2ba9ba5.jpg SVR Achieved 7/8/16

 

Tig


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Hi Peri,

Welcome to the group, I'm glad you found the forum too! We've got a lot of friendly, knowledgeable people here. I hope we are able to help you find some answers and relief from the stress associated with all of this.

I think the answer is a biopsy as well. Try your best to not be afraid of one, they really are an easy thing to accomplish. The hardest part is the paperwork and fanfare beforehand, the procedure is easy. I've had several and the last of them were done asleep. They were simple and are very reliable. It's worth considering for peace of mind.

Congratulations on your SVR! GT3 is a stubborn one, so you have accomplished a great victory already, well done! 



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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PS. Mallani, your post Tx progress is outstanding! Congrats to you to Wendy on your SVR. And looking forward to your clearance of the virus Canuck. :



-- Edited by Transient on Saturday 30th of April 2016 08:03:42 AM

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Ex-HCV G3a. Pre Tx teas results, Fibroscan 7.6; APRI F3; Ultrasounds have my liver as either cirrhotic or normal. Post Tx tests Fibroscan 3/16 4.8kpa; bloods all normal range; Ultrasound, cirrhotic. Confused!



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Hi Canuck and Mallani! 

I've had Hep C for 38 years before I was successfully treated, and I hear you Mallani, G3 seems to be an aggressive genotype. I've resisted a biopsy because I've always been scared of the very thought - I'm pretty much a coward when it comes to medical procedures. However I will implore my hepatologist to give me some certainty by way of an MRI or CT, if you think they would give a better picture of the state of my liver.

Canuck I had my first Fibroscan in '08 and it measured 5-5.6kpa; next was in '09, which was 6-4.8kpa (these older reports give a set of numbers, I'm guessing they were the predominant scores out of the 10 readings). In 2011 I scored 6.3kpa, then as stated 2014 I was 7.6 and then 1 yr post Tx 4.6. I've had a big handful of U/S over the years and they seem in equal numbers bi-polar, some see coarsened echo texture etc and others see normal texture. Looking at my medical scrapbook(!), I came across a CT scan, that I had forgotten about, which was taken in '08, which states 'liver is normal'. Btw, my ALT and AST have always been elevated above 80, since first tested and I've always had a very healthy albumin count.

So make of that what you may... Btw, you might be wondering why I never took the Interferon route - there is a family history of auto-immune disease. Post post Tx I seem to have evaded that particular nasty.

Thank you both for your replies. It does help even just to have a conversation about this. My family care but aren't up on the medical lingo, also I don't wish to worry them. So its a great relief to be here!

Cheers from Noosa :)



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Ex-HCV G3a. Pre Tx teas results, Fibroscan 7.6; APRI F3; Ultrasounds have my liver as either cirrhotic or normal. Post Tx tests Fibroscan 3/16 4.8kpa; bloods all normal range; Ultrasound, cirrhotic. Confused!



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Hi Peri,

Your concern is very real as we know what a beast 3 is/can be. If it were me, I would see what my doc recommends, what the insurance will cover and I would want a biopsy. It will certainly give you answers and hopefully put your mind at ease.

 

all best,

wendy

 



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Wendy 53 y/o, DX 1994, geno 1A F1

1999 TX 1 - Inter -non responder 2001 TX 2 - Peg + Riba - viral load tripled and taken off

T3:  Harvoni 12 weeks Sept. 19, 2015 ALT 41 AST 30 VL 541800 UND at EOT and SVR 24 ALT 18 AST 26 platelets 223

 



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Hi Peri,

Welcome, glad to see you here.

I am a 3 too.

I probably shouldn't, but I'll take a stab at it. I'm no expert, that's for sure! But I am game .

Others here will follow, I am sure, and offer their best thinking.

Firstly congrats on your SVR.

Well presented info too, this will helps others to formulate responses to your query and concern.

I chose to reply right away, not that I can really answer you with any authority, but, just because i can hear your concern.

I hate to see you worrying, it sounds not too bad (to me), with your last fibroscan showing a reduction to 4.8 kPa!

My major question needing clarification would be: You DID NOT have any other prior U/S's pre-treatment?? Only the one fibrotest and one fibroscan pre-treatment? And then one fibroscan post-tretament and only the one U/S post-treatment? Is that correct?

Perhaps it would have been more telling had you had a number of "prior" U/S's, then you would have had at least other U/S's to compare to and against (pictures over time) - but, if the only assessments you had were the ones you mentioned ... then firstly, one pre-treatment fibrotest may not have been accurate. So then, just based just on the fairly substantial spread and drop of your pre and post-treatment fibroscan kPa scores alone (pre-treatment 7.8 barely into F2/possible moderate fibrosis, and post-treatment 4.8/mid-range of no/or mild fibrosis), this would likely indicate a pre to post reduction in firmness.

Until you get to talk with your doc further about this, I would go with the comment your doc made, U/S is just a tool (one tool), to be taken with salt. Your one "single" U/S does not tell you very much - like what did your liver look like before?! Your 2 pre and post fibroscans, on the other hand, as they stand, are comparative, and the kPa values and the marked decrease are not supportive of the premise of cirrhosis.

Believe me I would be very pleased to see my pre-and post fibroscan readings reduce from 7.8 to 4.8 - would be celebration time for me!

But I do understand why you would be feeling unsettled. Perhaps with more testing over time your doc will be able to re-assure you.

For what it's worth, I hope that helps some. C



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HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



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Hi and welcome Peri.

Congrats on your SVR. Geno 3 can be tricky but 24 weeks of Sovaldi/Riba have obviously worked in your case.

I can understand your confusion. Previously I had great faith in Fibroscan, but there have been some recent cases I know about where the readings have been way off.

The only way to know for sure is by liver biopsy. I am SVR + 3 years, and had both Fibroscan and biopsy to check progression of my cirrhosis. I have improved from F4 to F2-3 and my liver is no longer cirrhotic.

Geno 3 progresses to cirrhosis faster than other Genotypes. If you've had it for 30 years, cirrhosis is a real possibility.

If you don't want a biopsy, CT or MRI are much better for assessing cirrhosis than Ultrasound. Forget FibroTest- it's too unreliable.

It's up to you. If it was me, I'd want to know, particularly with follow-ups for HCC.

Cheers from Brisbane.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm



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Hello! I really like this HepC forum community and find it very informative.

I am feeling somewhat unsettled by a recent Ultrasound report, however, i shall begin by giving a bit of background.

I was HCV+ GT3a for 30 odd years. I'm female 59 yrs old. I was Tx naive when I was offered 24 wks Sovaldi+Ribavirin and my EOT date was April '15. I became anaemic on the Riba very quickly and so my dose was reduces for the remaining 21 wks to 600mg a day. By 4 wks into Tx I had undetected VL. I was informed Sept "15 I had SVR - for joy! My bloodwork post Tx has been normal, platelets still in the 160-190 range, but all else looks good.

In March had a Fibroscan (a year after EOT), which scored 4.8kpa, pre-Tx, it was 7.8. Earlier this month i had an Ultrasound, which has reported my liver margin as looking irregular/nodular, basically cirrhotic looking. Pre-Tx I had a Fibrotest blood score, which placed me in the F3, severe fibrosis category. I have not seen my specialist yet, but in an email exchange he said US is not a very good tool for ruling in or ruling out cirrhosis, so must be taken with a 'grain of salt'.

I'm wondering has anyone else had this kind of experience and is there any way of verifying whether my liver is cirrhotic or not. After recovering from my Tx, I have been in reasonable good health, though there has been some stress in my life these last few months that has caused me to lose a couple of kilos, and this ultrasound report doesn't help, as I guess I'm a little shocked and fearful. I would really appreciate input on this conundrum of mine.

Best wishes to all,

Peri



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Ex-HCV G3a. Pre Tx teas results, Fibroscan 7.6; APRI F3; Ultrasounds have my liver as either cirrhotic or normal. Post Tx tests Fibroscan 3/16 4.8kpa; bloods all normal range; Ultrasound, cirrhotic. Confused!

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