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Post Info TOPIC: New here, newly dx'd
Canuck


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RE: New here, newly dx'd
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Hey SS,

Wonderful news, you got your epclusa!! Won't be long now.

Regarding your labs - they all look pretty good, save (of course) for the  HCV load, and the HCV antibodies which of course we would all test positive for.

Your other bloods/LFT's (liver function tests) also look good, all within normal limits, except for your ALT.

Re: your fibroscan results - I remain confused by their terminology and the way these measurements are shown, not a familiar format to me  ... I am assuming they are low.

This is what I understand ... "Echosens" FibroScan machines can have 2 applications:

- it measures (1) liver stiffness/elasticity, expressed in a number of kilopascals (kPa's), your level of hardness/fibrosis/cirrhosis. (See conversion from kPa's to F score:  FibroScan Scoring Chart )

- it can also measure (2) how "fatty" your liver is (steatosis), CAP (controlled attenuation parameter), CAP is expressed by a number of decibels per meter (dBm's).

Your fibroscan paperwork expresses different terminology and shows small numbers using no kPa's or dBm's, some of your results I am sure are arrived at by means of calculation of your bloodwork and other parameters, but I am not sure what method(s) of calculation they used: (See some of these methods here, but there are more:  Fibro-sure (also called Fibro-test), the Acti-test, and the Apri-test )  

 

FibroMeter (fibrosis score) 0.21 F1[F1-F2] Predominance of F1, but F2 is possible  

CirrhoMeter (cirrhosis score) 0.01 F1[F1-F2] Predominance of F1, but F2 is possible

InflaMeter (activity score) 0.27 A0/A1 Equal probability between A0 and A1

However they arrived at these, I would assume in red are your levels. Maybe Tig can shine further light on your "fibroscan" results and why we do not see a kPa.

I am very glad you are going to be able to get started on your epclusa soon. You have done well in your speed pursuing this. Good going! smile C.

 



__________________

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)
Tig


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Hi Jen,

Those are very impressive results! The ALT is elevated slightly, but that's expected/common with HCV. Your viral load is high enough to warrant 12 weeks of treatment, but viral load plays little role now on SVR. Fibrosis stage is wonderful in our world! You will do very well, I'm sure of it!! Go slay that Dragon!



__________________

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!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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Shadowfax


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Approved for Epclusa.

 

Great news and you are pretty much approved for SVR with news like that. It seems your LFT's and other scores are not bad at all but in a strange format as Canuck said for a Fibro score. actually pretty good.

Wishing you well with the other problem but you are on top of it so that is a great start.

Please keep us posted.

 

SF



__________________

65 yo, GT1A, , Cirrhosis, F-Scan F4 33.5, TX Naive Harvoni 12 wks

SOT 2/9/16 / ALT 187 AST 114 VL 2.3M.    POSTS

EOT 5/2/16  ALT 35/ AST/25  platlets 126 C/B VL UND

EOT +12 7/26/16  ALT 25 /AST 22/ ALP 83  platlets 129 C/B VL UND

EOT + 24 10/18/16 ALT 27/ AST 20/ ALP 71 platlets 153 C UND

 * SVR *
Sanuk-Sanan


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Hello Friends,

I just got a call from the pharmacy doing all the insurance jujitsu telling me that I've been approved for Epclusa.  I'm not sure what happens next, but I think they'll deliver it in a Brinks Truck smile.

I seem to be obviously confused regarding the tests and whatnots, so I'm copying the data in this post.   You can see below where I'm getting the FibroMeter Score of 0.21.  If someone could explain it (or point to a post explaining it), I'd be grateful.

Still got a lot to learn,

HEPATITIS C RNA.SER/PLAS.QN (LOG IU/ML)7,400,000 IU/mL 
HCV RNA, Quant PCR6.9 log IU
Hepatitis C Ab index>11.00  0 - 0.79

Here's the info from the Liver Fibrosis, Chronic Viral Hepatitis (Echosens FibroMeter) test:

Liver Fibrosis, Chronic Viral Hepatitis Echosens FibroMeter 2005661 FIBRO V PLATELET COUNT 266  

FibroMeter (fibrosis score) 0.21 F1[F1-F2] Predominance of F1, but F2 is possible  

CirrhoMeter (cirrhosis score) 0.01 F1[F1-F2] Predominance of F1, but F2 is possible

InflaMeter (activity score) 0.27 A0/A1 Equal probability between A0 and A1

 

Blood:

Alpha-2-Macroglobulin 156 131-293 mg/dL

AST 36 9-40 U/L

ALT 54 5-40 U/L

GGT 25 7-33 U/L

BUN 16 7-20 mg/dL

Plateletsð 226 k/uL

Prothrombin Index 99 90-120 % 

 

Thanks for your help,

Jen



__________________

GT 2b;

Oct 2016 F0/1; TX 12 week Epclusa; UND at SOT +4

 
Canuck


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Great you've almost got your 12 weeks of epclusa, and hopefully, will receive it now without much further delay!

I like the sound of your plan and docs. Studying your bloods may prove difficult, things to take into consideration, given your prior history of conditions/treatment that may also have been affecting your LFT's. Great you have had so much assessment done prior, albeit for other important reasons, as it only gives you a better baseline of overall knowledge for you and your docs to work from. You, and they pretty well know where all your systems stand, as a jump off point in starting your HCV treatment. Maybe you will post your most recent/HCV pre-treatment (or past) ALT, AST, ALP, bili, AFP, or other bloods? etc. An odd stroke of luck, perhaps, because of your other afflictions, that that may have been the reason, you fortunately discovered you even had HCV! 

I assume you have had all necessary assessments done now and are up to date with all your immunizations, etc.

Great you seem to be a F0, but I am still a bit confused about the ".21" number your wrote below - I would assume your fibroscan F-score of F0 would be based on a kPa number, but I have not seen such a number (.21kPa) written like this before - is that indeed what your F0 fibroscan score is based on, on a kPa measurement of .21kPa's?? 

Normal healthy people with just fine livers can have kPa's as high as approaching 7 kPa's!

You deserve a lot of credit. Strong woman! You are doing it!

What was the melanoma trial you were trying for?

I hope your 12 weeks will go fast and easy. smile C.



__________________

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)
Sanuk-Sanan


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Thank you Wendy and Canuck and Phoenix for your warm welcome. I appreciate it!

I saw my hep c doc yesterday. He's a gastro/hep - ologist and has much experience with hep c. He also seems to work well with my oncologist. and this is a plus.  I hate it when the docs don't play nice with each other.

Here's the info I found out from my G/H Doc: I have a F score of F0/1 and he's recommending Epclusa.  The plan is that the doc's office staff will work with a specialty pharmacy to get insurance approval.  Drugs then arrive on my doorstep sometime shortly there after, hopefully  sometime late next week.  I don't know that it will go that way, but, subject to change,  this is the plan.

I don't know how long I've had hep c. Doc said that there's no way to know how long I've had it, so I can't even guess how I got it.   I had a blood transfusion in the late 80's - early 90's.  I've also lived in place where it's endemic so that's a possibility. Just don't know.

Because of the other drugs I'm on for cancer, I've had my liver function numbers watched pretty closely and I've years of data. The cancer drugs I've been on can cause some crazy numbers.  Some weeks LFT number have been high, but not crazy high, but most of the time it's been in the normal range.  I also get scanned often so I've got a recent MRI that shows an "unremarkable" liver.  Oc course we weren't really scanning to look at my liver. My lungs were the bigger worry.

Yes, the fibro-score is a FibroScan number.  

I think this is all I know at the moment.  Now just waiting to start treatment.

Thanks again for your help!

Jen



__________________

GT 2b;

Oct 2016 F0/1; TX 12 week Epclusa; UND at SOT +4

 
wendyo


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Welcome Jen

Sorry to hear that you had to postpone the melanoma trial. Maybe it is a blessing to let your innards heal from the nasty treatment you did while you are awaiting to deal with and treat the HCV. Be sure to use the SEARCH feature and read all you can about geno 2 and what folks here have experienced, learned etc. 

Not sure with your insurance if you need a referral but you should see a hepatologist or gastroenterologist for your HCV. 

This is a great place for knowledge, support and laughter to help us get thru this time. 

all best,

wendy



__________________

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

 
Canuck


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Hi Sanuk-Sanan from me too.

Sorry to hear about the melanoma. And sorry you just found out the HCV has been added to your plate. I am glad you are preparing to treat your HCV.

Do you know about how long you have had the HCV? What F score you have been labeled with, i.e. F1, F2, F3, F4 (level of fibrosis or cirrhosis), if so, what is it, and what method they used to arrive at it. What abnormal elevations in your liver function tests (LFT's) blood tests are showing, and what have your liver imaging tests shown. (Abdominal ultrasound, CAT scan/MRI, biopsy)? 

If you are in the USA, and, depending on your location (to a degree), and your insurance, a choice in HCV treatment drugs might be available to you. It all depends, (somewhat) on your degree of fibrosis/cirrhosis, and what they will make available to you. 

Current recommendation for HCV treatments in the USA are evolving and changing for the better, but unevenly. Some people are now more easily "qualifying" for the newer Epclusa (sof/vel). Cirrhotics and treatment experienced relapsers might still be offered riba as a triple regime. It all depends on where you are at, both logistically and physically it seems. Important to determine how bad your liver is, and if you have any other conditions which would merit extra planning or watching for HCV treatment, such as, for people in kidney failure, etc. If Epclusa is not appropriate or available to you, then they might offer you sof/dac.

 AASLD TX GUIDELINES 

I have no idea how the melanoma and prior melanoma treatment may play into the HCV treatment, but you and Phoenix are right, you need a good doc to advise you, on your particular health conditions (cirrhosis is a consideration) when making the decision of what drugs you could or should take for HCV, ALL of your  health parameters have to be considered. Have they already suggested what HCV drug regime they would want for you? Important, the HCV assessments, bloods and imaging are, as well as insurance and location, to know what you your drug choices may be.

Some people find, although THEY are ready to go, they are held up waiting to satisfy insurance approvals with further imaging or testing requirements, such as having a particular F score determination. I hope this does not happen to you, as you seem ready, willing and anxious to get going, as you have even more to do!

You mentioned your "Fibro-score" is .21 - can you verify what test this was, name of it?

Have you had a "Fibro-SCAN" as well? 

I only hope this pile of questions I ask you here, are the same territory you and your doc have already covered. And with ducks in a row, that there will be no stones left to turn to delay your HCV treatment. C. 

 



__________________

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)
Phoenix17


Senior Member

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Posts: 218
Date:
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Hi Jen - Welcome to the forum! I too am GT2. I am on week 4 of Epclusa. It has just been approved in either June or July. I am on it for 12 weeks. So far so good! I did my research and wanted Epclusa. My Hepatologist agreed and put in a pre approval to my insurance company. They approved it and am on my way.  

There are so many people here that know WAY more than I do. You will meet them soon I am sure. This is a group of knowledgeable and supportive people. You have come to the right place!

Sorry to hear about your Melanoma.  What kind of Doc are you seeing?  My regular Doctor wanted me to see a Hepatologist. They should be able to advise you on how to handle both hep c and melanoma. 

There has not been  a better time to get treatment for hep c. The newer drugs have a lot less side effects ( I only have had a few small headaches ) and the cure rates are extremely high. Almost at 100%

Keep in touch, let us know what your doc has to say! 



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Sanuk-Sanan


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Hi there Friends,

I'm new here - just diagnosed 2 weeks ago while trying to get into a clinical trial for advanced melanoma treatment. Needless to say this new news disqualified me from the trial and has made me look for less than optimal melanoma treatment.  But never mind, I have a plan: 1) kick hep c butt, 2) evict melanoma from lungs and anywhere else it is hiding.

So I've just gotten all my blood test results back last week and am waiting on the doctor's office to call me back. After a week of waiting, I'm now starting to call daily.  I'm normally a patient kind of person, but the clock is ticking with a co-dx of stage 4 melanoma.  No more Mrs Nice Gal for me.

I know ya'll aren't drs, but what should I be asking? What should I know before going into this?  I've done a month of high dose INF for melanoma, and I won't do that again.  It was months of hell and took me a long time to get back to whatever normal was to be.  But are there more preferred treatments for geneotype 2? 

Thanks for your help and support!

Jen



__________________

GT 2b;

Oct 2016 F0/1; TX 12 week Epclusa; UND at SOT +4

 
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