emo Cheating Fibroscan

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6 years 6 months ago #9510

Wayne wrote:

All AL posts are negative obviously is on a different agenda to the rest of us. :+1:

Sorry, you are wrong on both counts.

For one, I have exactly the same fundamental agenda as the rest of us here (apart from Tyler and Marla), which is to get better, share points of view, and support the people who run this site.

Secondly, there is very little negative in my posts – unless you consider that anything which doesn't 100% agree with your views to be negative. We are all essentially on the same side, but that doesn't mean we have to sing exactly the same song.


G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)

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6 years 6 months ago #9511

Gaj wrote:

...

The replies by members here seem to show concern for the health of the OP by advocating against going on a bender and then share their experiences of some of the inaccuracies inherent in Fibroscans.

Yes, people were concerned about OP going on a bender and tried to dissuade her.
I see no commissioning of fraud but a lot of advocacy for best health practices.

Well, we half agree.


G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)

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6 years 6 months ago #9512

Well I am not going to enter the debate about the person who desperately wants to be cured and needs to find a way however they can, by throwing around semantics and the like, by using words laced with connotation.
I think that it is criminal to deny treatment to anyone. I think it is almost genocide to leave us all on the bench. I think it is inhuman the things that are said about a HepC infected human being, and I think that the things that happen as a result of this virus still warrant much more research. But, I have had a few fibroscans. They hover around F0- F1 in score once the kPa for each one I have had is converted to the F table. My kPa was 5.5, my kPa was around 6, my kPa changes. I have stopped having them because they all just changed and were really a waste of time and the taxpayers money.
So the answer re fibroscan results and their changing from time to time is yes, obviously everyone's readings are going to be different depending who knows what. Is it where they pop that stick on the side of me? Is it' as LG pointed out, my weight at the time...is it a good hearty meal.....who knows? Not me. I don't care anymore anyway I am on tx. I don't have to worry about it becoming a worry.
The topic here is not about advice for obtaining a score for accessing tx...the topic is bigger than that. The topic is that this is a place where you can access tx, you can get a chance, you don't need to prove a score to get your medicine. This is a place where you can ask for help. You can buy medicine. You can find support even in the worst times. I read how difficult it is for some friends here to get tx, how hard and challenging it is in the UK, how ordinary the system is in the States, how people are flying across the Tasman....
Seek tx here now, that is the best advice I can give in love. #love


Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
Last Edit: 6 years 6 months ago by Ariel.
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6 years 6 months ago #9516

A.L. wrote:

(apart from Tyler and Marla)


And you are the narrator?


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
Last Edit: 6 years 6 months ago by Gaj.
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6 years 6 months ago #9561

Thanks for the good advice! I think I´ll refrain from going into a discussion about the ethics of my question.

I have my appointment tomorrow morning and will go for a big breakfast. To those concearned, im still sober B) B)

As for getting generics, they´ll ship today. I will however have to bend a few rules to get them into the country anyways


Genotype 1b - Tx naive
Pre Tx Vl 8 900 000, Alt 52
2 weeks VL160
4 weeks VL 43
7 weeks VL UND
EOT UND
SVR 12 UND

Startet Tx 6. feb 2016 Hepcivir-L (Generic Harvoni from Cipla)
(REDEMPTION trial)
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6 years 6 months ago #9573

PauliNO wrote:

I will however have to bend a few rules

Pfft! I've driven large trucks over some of those in my lifetime. :lol:

I don't necessarily advocate it for others but for me, if it doesn't go outside of my personal ethics, risk hurting others or set a bad example to minors then rules are merely boundaries set by someone else so I weight up why they did that, the consequences versus the outcome and make a decision as to my course of action. YMMV

Once you are in a position to be confident of your own treatment it would be great to hear what the situation is with regard to the legalities of entry of prescription meds into your country........also any suggestions you may have for others who wish to follow if you are comfortable with that bit.

Hoping for a speedy commencement and successful treatment for you. :)


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:
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6 years 6 months ago #9694

Gaj wrote:

A.L. wrote:
(apart from Tyler and Marla)


And you are the narrator?

According to one interpretation I've read, the characters are all various projections of the same person. :cheer:

Maybe like the range of consciousnesses and perspectives expressed here (but I'll leave it there.)


G4, F4, cirrhosis.

Thank you to Gilead, Michael Sofia, and the terrific folk at FixHepC for making this adventure possible.

YEAR..... ALT..... AST..... GGT... FERRITIN........................................
2009....... 210..... 215..... 953..... 1400........... (Bad health, stupidity)
2015....... 60....... 45....... 150..... 360............. (Improved diet and health, FixHepC treatment)
2016....... 20....... 24....... 25....... 156............. (SVR 12)

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6 years 6 months ago #9711

That did cross my mind when asking after you made what many would consider an obscure reference in this thread.



* for others; we are discussing the central characters in the novel Fight Club where at least some of the themes are not totally unfamiliar to many of us (I find the graphic violence in the movie makes it unwatchable)


G3a since '78 - Dx '12 - F4 (2xHCC)
24wk Tx - PEG/Riba/Dac 2013 relapsed
24wk Tx - Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx - 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 - 22/06/17 UND
SRV12 - 27/07/17 UND
SVR24 - 26/10/17 UND
:cheer: :cheer: :cheer:

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6 years 6 months ago #9713

Well, if the rules are arbitrary and unfair, and basically designed to exclude people from treatment in the first place, to quote John Lyle:

"All's fair in love and war" ...

And as far as Gilead are concerned, we're not talking about love!


Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable).
Week12 (EOT): AST 30, ALT 26, VL UND
Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND
Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND
Ever grateful to Dr James.

Relapsed somewhere after all that... Bummer!

Jan 2018: VL 63 000 (still GT3).
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6 years 6 months ago #9938

Hi PauliNo,

I did note you were due to have the fibroscan some days ago but have not posted on this thread how things went.

It's certainly hard for me to hope the result is bad enough for your insurance(?) company to fund the meds.

Some of the things I have read about the fibroscan results make you wonder a bit about whether they should stick with using them as an aid to gauge how long meds should be taken. In my case a liver resection meant that the operator decided he could not do a scan anyway!! I did though do the 2 hours fasting before as directed.

Complicated life this Hep C stuff. The consolation prize for having a low score, for me would be worth it - both in sense of having a better liver and maybe having to be on the meds for a shorter time.

Yours


J.


GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
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6 years 6 months ago #10073

The consultation went well:) The doctor did two full rounds of fibrocan and they showed around 5 and 6. Apparenty there can be quite big variations depending on exacly where they do the measurements.

As I have signed up for generics(Hepcivir-L) through the redemption trial and the meds where delivered in the UK on monday this week I was happy to see that there hadn´t been any more damage to the liver. I´m traveling to UK to pick up the meds friday and will start Tx saturday.


Genotype 1b - Tx naive
Pre Tx Vl 8 900 000, Alt 52
2 weeks VL160
4 weeks VL 43
7 weeks VL UND
EOT UND
SVR 12 UND

Startet Tx 6. feb 2016 Hepcivir-L (Generic Harvoni from Cipla)
(REDEMPTION trial)
The following user(s) said Thank You: Ariel

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6 years 6 months ago #10108

That's exciting!
good luck to you :)
x


J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
Last Edit: 6 years 6 months ago by CJ. Reason: my key board's stupid

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6 years 6 months ago #10119

My good wishes too!


GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.

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