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Post Info TOPIC: Starting new hep c drug in August


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RE: Starting new hep c drug in August
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Those charts are wonderful, thank you Canuck. 

Dax - we look forward to you getting on the V train!



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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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Ah! THAT explains it then - I thought you had maybe been LIVING in Italy for a while! hee hee. I note (now) the key word ... "Reference" ... in relation to interpretation of scale. So, that's what I get for skimming! ha! You are right about it being a standard.

I am always interested in these things, even when they beyond my intimate familiarity. That doesn't stop me! I wade in, over my head in no time!smile

The rule is, read twice, then you only have to type once, in my case I like to skip stuff and then I just type twice as much!

I was still dabbling around trying to figure out how one can convert these m/s to kPa's - impossible for me! (Mind you this is a person who's partner today had to politely ask if I had run out of socks, I looked down at my feet only to discover I had been wearing two diff. colored socks all day, and hadn't even noticed! hahaha

Nice you have supportive family, like my partner supported me through treatment, it helps so much to have someone to assist where they can. I like the sound of your plan to take 6 months off and concentrate on this good stuff - that would be ideal.

Being that I cannot deduce your exact kPa, it will suffice for me (if it does for you) to know that they did "downgrade" your severity after insurance sent your data on to university. They DO take into consideration ALL the testing you must have had done.

Hey ... this Aug 8 date - your proposed start date ... Aug 8 just happens to be the EXACT long-awaited "advertised" roll-out date for the new "Vosevi" - (see this thread) ...  SOF/VEL and SOF/VEL/VOX 

Your doc must have been right on the ball to procure it for you as soon as it comes available! Good for him, and you. You are entitled to be feeling numb, I will just go ahead and be thrilled to bits for you, until you catch up, about being our first here who will actually be getting Vosevi by prescription! biggrin 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)

Dax


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Thanks everyone so much. The ultrasound was conducted here in the US.I will have to find out what the Italian reference reference is on the report. I assumed it was some type of world standard. 

When I first read the report I was stunned at the rapid progression however when the insurance company had the results sent to the university they downgraded the report in January (surprise). I have a very sportive family though I feel pretty numb. I am taking 6 months off work to focus on health to include diet and exercise And of course treatment.

 

again thanks 



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Dax


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Hey Dax,

Thnaks, for posting that - very informative or at least "confirming". So, this was done in Italy! You ARE in USA now aren't you? But good you have had at least these 2 prior ultrasound investigations (2015/2016) to compare against this last 2017 one, you have some good continuity to follow your HCV conditions. I'm not familiar with the equip they use in Italy, but this seems quite a valuable thorough report. Very useful info for your now North Amercian (I assume) doc, who re-assessed you for your upcoming August re-treatment.

If and as you get "new" lab/test reports from your current doc who is/will be working you up for your Vosevi tretament, please do share those current assessments/labs (whatever you are comfortable with sharing).

I do not see the 216/271 numbers on this report you were trying to figure out, (which I wondered if they possibly had to do with fat content measurements) but I can see other comparables. The doc has said as much anyway - that he sees fatty changes in your liver via the ultrasound images. We GT 3's can have a propensity to develop fatty livers as well as we carry HCV over time, moreso than say other GT's. Peolple can gain resolutions to a myriad of HCV related conditions after cure, fatty livers can also be some of the first things we see improving.

Your Italian doc's machine(s), his "scale" of measure, that he goes by, that gives you a "probable" Fscore of F3-4, is based on a kPa number of somewhere between 12.0 kPa's and 21.0 kPa's. (There ARE some differences in what scales are used world-wide with different countries/dif machines I find.) Here is another scale used which indicates that one may not be considered F4 until you are roughly over 12.6 kPa's.

________________________________________________________________________________________________________________________

A 5-point scale is used in grading the degree of liver fibrosis:
  • F0= no fibrosis
  • F1= minimal fibrosis
  • F2= fibrosis has occurred and spread inside the areas of the liver including blood vessels
  • F3= fibrosis is spreading and connecting to other liver areas that contain fibrosis
  • F4= cirrhosis or advance liver fibrosis
Fibroscan scoring card 
Keeping this in mind, we can use the Fibroscan scoring card to convert  Fibroscan results measured in (kPa) into the Metavir scale F1-F4.

 

4761746.png

Located on the bottom of the Fibroscan scoring card is Fibroscan results in (kPa) measurements 0-75, more accurately Fibroscan results range from 2.5 kPa to 75 kPa. Between 90-95% of healthy people without liver disease will have a liver scarring measurement less then 7.0 kPa (median is 5.3 kPa).

A person with chronic hepatitis C and a liver stiffness more then 14 kPa has approximately a 90% probability of having cirrhosis, while patients with liver stiffness more then 7 kPa have around an 85% probability of at least significant fibrosis. 

However,  research has shown Fibroscan accuracy in assessing lower degrees of liver fibrosis (F1-F2) is not as reliable compared to diagnosing advanced fibrosis and cirrhosis (F3/F4)


Fibroscan Scoring Card
3895950.png

5802531.png

 
 
 
 
 
A fibroscan score of  8.2 in "hepatitis C"  is the same as fibrosis stage 1-2 or (F1- F2) as shown in the color coded scale.
 
A fibroscan of 12.2  in a patient with "alcoholic liver disease" is borderline cirrhosis or (F3) .
 
Additional Links
What is my FibroScan result and what does it mean? 
Results are measured using kiloPascal's (or kPa) and range from 2 to 75.
 
The normal range for a FibroScan is between 2 to 7 kPa. The average normal result is 5.3 kPa.
Your liver doctor will explain these results to find out how much scarring you have. Your result will vary based on what liver disease you have. 
 
Scarring has 4 stages:  F0 means no scarring, F1 is mild fibrosis, F2 is moderate fibrosis, F3 is severe fibrosis, F4 is cirrhosis or advanced fibrosis

The following table shows the stages of fibrosis.
 
fi.PNG

 

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Fibroscans (and ultrasound images) are a good tests to have, fibroscans are good but are not absolute - your docs WILL take EVERYTHING into consideration, ALL indicators, from blood tests to images, to determine their best guesses at how you and your liver are doing. Your spleen enlargement is something commonly associated with developing cirrhosis. So, very good you are going to be treated now with the best!  

In just the text alone, the doc's summary/impressions are enough to be telling. It confirms you are technically cirrhotic (or at least in the advanced fibrotic range) based on a progression from your fibrosis level of F3 in 2015/2016, increasing to be at some unknown number but at least over 12 Kpa's in 2017, thus putting you in the F3-4 range. We still don't know exacty (from this report) what your actual kPa number is, except that it is likely over 12.0 kPa's.

I'm no good with math but somebody 'round here could prolly figure out how to convert your 2.14 m/s measurement to kPa's to show you your exact kPa measurement - but you are certainly closer to 12 kPa's than you are to the high range of 21 kPa's anyway.

That is great they have reccommended a CAT or MRI, have you had that done yet? That too will be very good information for you and your doc.

How are you feeling?, in general (about everything or anything) anyway.

I think you are very lucky to be having good work-ups and will be getting Vosevi and will soon be rid of this virus. 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 Dax,

Welcome to the group! I appreciate the PDF, that is very informative. From the look of it, I think it's a great time for you to hit this hard. F3-4 Fscore, fatty liver with portal hypertension, and splenomegaly all indicate advanced disease, but you can and will turn it around. Get yourself on treatment! It's important...

Sorry to hear about the Sov/Dak failure, that doesn't happen too often. I think 24 weeks would've given you a better chance. If you do get the triple Canuck mentioned, Sov/Velpa/Vox, you'll do well. It's an incredible combination.

Stay in touch, you're with friends!



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Tig

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

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Dax


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PDF attached. Exposed to hepc in SE Asia in 1994.



Attachments
med record.pdf (465.2 kb)
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Dax


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Don't fret, all it much brighter now! You will not be in the dark for long! biggrin You got Vosevi now! Yay!! I'll say .... (understatement) that your nurse is optimistic - you should be too!, count your lucky stars (I sure did) when I got sof/vel/vox. You could not have recieved better news than to be told you are going to get these drugs.

So, is there any way you can copy/scan or post that "summary"? Just a thought. To be truthful, i am horrible with computer stuff, so i would not even be able to tell you how to do that. If I tried to do that I would probably just end up typing it out word for word!

If you can't fill us in on any of the lab results/test results, you can always just share your story here, if you are comfortable doing so. If you have any burning questions we can help with, just start firing away with questions.

Do you think you have had HCV for a long time? How did you feel before the sofa/dac treatment, and then during the sof/dac treatment, and after? That's great news you're getting Vosevi. biggrin 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)

Dax


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Hi Canuck,

thanks for the quick response. I believe what I have is a summary from an ultrasound 

completed last month. Vosevi is the drug I will be taking next month, around 8/8. The nurse practitioner at the hospital is very optimists. The copied report does not specify GT 3 thigh it was on an earlier report ( did not indicate a or b). Again thanks for your assistance. I am in the dark.



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Dax


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Hi Dax, 

Welcome here from another fellow "X" GT3. I used to be a GT3a, now cured. Do you know if you are a 3a, or a 3b, just curious.

I am reeeeallly hoping the drug regime that you and your doc are discussing for your re-treatment in August is "Vosevi" (sofosbuvir/velpatasvir/voxilaprevir) or sof/vel/vox for short. It is a new "triple", a combination of an existing double regime of "Epclusa" (sof/vel) but with "vox" added to make up this new triple.

I am only guessing that this triple "Vosevi" may be what you could get, and I hope you do.

Like you mentioned, you are getting a "new" drug (and indeed Vosevi IS a new drug), and your timeline is also correct (August IS the long awaitied roll-out date for prescribing this excellent treatment), so perhaps this IS what you will be getting.

I, and only a handful of people on this site have been lucky enough to recieve this particular sof/vel/vox regime, and we all got it only by being in Gilead's drug trials for it. We (and thousands) of others in various epclusa-based trials have been VERY well cured with epclusa and epclusa+vox. Many people are already freely recieving the relatively new Epclusa by prescription now, but "Vosevi" is the newest godsend for GT3's and is perfect for people who have failed prior treatment. It is very effective and works well despite levels of cirrhosis. You would be very fortunate to recieve it.

I would verify with your doc (or nurse) if "Vosevi" is indeed on his drug choice list for you. Please do let us know, when you know.

I am very sorry you had to go through 12 weeks of sof/dac and not be cured. It was not that long ago, that many GT3's were routinely doing 24 weeks of sof/dac, not 12 weeks, but that is all water under the bridge now - I am positive your doc will never let that happen to you again - you WILL get it this time!

Now, regarding your question about your ultrasound and Fscores, etc. We will gladly try to help you decipher these results and numbers, but if you could provide a bit more info about them, elaborate a bit about the tests, it would help us figure it out easier, otherwise we may be just guessing like you!

Did you have BOTH, an abdominal ultrasound scan , AND a "fibro-scan" test done recently? (They are usually 2 separate things/2 different separate tests, using 2 different pieces of equipment). This we need to clarify first, to be able to help you with any accuracy.

I am guessing with your hx of HCV and a prior failure on sof/dac, you have probably been well-followed with both some abdominal ultrasounds AND "fibro-scans". You seem sure you are cirrhotic, you mention "stage 3" in your post, and "stage 3-4" in your bio (stage 3 or 4 may be exactly the same as your "Fscore", your fibrosis score, which would be the equivilent of F3 or F4 . But it would be very helpful to know by what machine/what tests you have had, to determine what your results mean.

Levels of fibrosis/or cirrhosis are most often arrived at nowadays by means of "fibro-scans" or otherwise called "transient elastography", a machine like this below:

8Echsens_Machine-208x300

Echosens Machine

FIBROSCAN (also known as transient elastography, a technology developed by Echosens of Paris, France) poses the greatest competition to biopsy as it is non-invasive, less expensive, and (arguably) equally accurate in measuring degree of liver inflammation and fibrosis, particularly in the higher end of the Metavir scale (Stages 3 and 4).

This "fibro-scan" test expresses your liver's level of elasticity (basically it's stiffness/ firmness due to fibrosis/scarring) in a kilopascal (kPa) number measuremnt which is then converted to an Fscore between F0 to F4.

If you have a written fibro-scan report that you could copy and post here (identity data removed), we could try to decipher it for you.

Only certain newer model fibro-scans also have the capability to additionaly measure for fat levels in the liver (steatosis) -"CAP" for short - I am wondering if some of the numbers you mentioned (216/271) are actually referring to a CAP number (expressed in dB/m), and NOT to your elasticity Fscore. If these numbers ARE relating to a fat CAP score then I am guessing they may not be bad, as i seem to recall a higher Cap as being over 300? I can't recall right now.

So, you can see where a little further clarification would be helpful.

A simple abdominal ultrasound IS very excellent/valuable imaging information, but generally it does not expressly provide you with a Fscore as an outcome from it. A fibroscan does provide you with a Fscore. Or, Fscores can also be arrived at by various blood test methods, and/or liver biopsy.

Please do provide us a bit more info, and we will try to help as best we can. 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)

Dax


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I cmpleted 12 weeks of SolvadI and Daklinza 15 months ago. Genotype 3. The new drug is Solvadi wit 2 others I believe. I have stage 3 cirrosis. I'm not sure how to read the ultrasound report but am concerned about the elast reading of 216 with 271 being failure. Any advise or info will be much appreciate. 



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Dax
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