emo Glossary?

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6 years 7 months ago #2637

Dear FixHepC team,

This site has a wealth of medical information and I've learned loads about Hep C.

But some of the medical lingo can be confusing.

How about a glossary section to explain all the abbreviations and initialisms? DAAs, APIs, PPIs, Tx, Dx, SVR, etc etc

Thank you for the wonderful work you are doing.


NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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6 years 7 months ago #2638

Really good idea, Joy :)

Seconded!


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
Last Edit: 6 years 7 months ago by zhuk.
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6 years 7 months ago #2674

Check out the new tab on the Forum.

Please add suggestions to this thread.


YMMV
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6 years 7 months ago #2676

Wow that was quick work...

Cracked up at 'Compassionate Access'

Thank you!


NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.

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6 years 7 months ago #2691

That was a cracker lol


Great work, thanks Dr!


Could I suggest 'warehoused' - The practice of keeping patients in treatment-mothballs while promising more effective drugs will be in the pipeline on a perpetual timeline of "soon"


GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
Last Edit: 6 years 7 months ago by zhuk.

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6 years 7 months ago #2692

The meaning of local abbreviations would be useful.

In the UK:

NHS = National Health Service (or alternatively = Not Happening Soon)
GP = General Practitioner
NICE = National Institute for health and Care Excellence

And:

EASL = European Association for the Study of the Liver

Also, this one's good for a chortle:


messybeast.com/dragonqueen/medical-acronyms.htm

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6 years 6 months ago #4153

Patient = human being in need of treatment, who often has to wait for a long time. See "warehouse".


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 #6199

Suggestions
Doctor code for times - 4/52, 8/52 etc
Abbreviations for drug names - SOF, DAC, LED etc. not sure if these are the normal "doctor" abbreviations. :)


M 61yo HCV+ ~ 30 yrs Gt1a F2 VL 223,000 ALT 54 AST 42 Tx start Sof/Dac 17Dec15.
SVR4 at 7Apr16 ALT 22 AST 22
SVR12 at 9Jun16 ALT 23 AST 25
Melbourne, Australia
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6 years 5 months ago #6435

Treatment naive?

how long into interferon and riba treatment is required to be not naive? I seem to remember they found out quickly interferon (alone) was not working for me.

how long ago would this be relevant?

the estimator programs that have been placed on this site usually seem to ask this, but my experience with interferon then interferon with riba was 15 odd years ago (and momentary at that).

fiddling with the latest program placed here (and thanks for that!) it seems to make little difference?? and the F score seems the most important, particularly from F3 to F4?



yours

J.

P.S. not sure this is all glossary stuff


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 5 months ago #6444

Interferon alone is classified as treatment naive by the guidelines.

Interferon+Ribavirin is treatment experienced.

Failure with protease inhibitors is a special case that doubles treatment duration.


YMMV
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6 years 5 months ago #6478

"Failure with protease inhibitors is a special case that doubles treatment duration. "

I have been inclined to agree with this all along but this is the first time I have actually heard a doctor say it. Any links that you can post on the subject would be much appreciated.

The Gilead Harvoni studies did not find that previous failure with a protease inhibitor made a difference to the 12 week duration of Harvoni tx. I do have previous failure with a protease inhibitor (telaprevir) and I have been suspicious that people are being palmed off with the 12 week duration because of the price of 24 weeks. I wonder if this has been done by Gilead in order not to lose the market of people who are protease inhibitor experienced.

Just because I'm paranoid does not mean they are not out to get me.

dt

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6 years 5 months ago #6486

KPdointime wrote:


Just because I'm paranoid does not mean they are not out to get me.

dt

Uh, no. I was just spotting birds through the telescopic sights........honest! :whistle:

:lol:
But now I understand your questions about longer treatment in the other threads. More details may help us to help you but in this case it sounds like you need expert advice.


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 5 months ago by Gaj.
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6 years 5 months ago #6513

I have been inclined to agree with this all along but this is the first time I have actually heard a doctor say it. Any links that you can post on the subject would be much appreciated.

If you have a look at:

fixhepc.com/blog/item/34-pbs-listing-some-tears-in-heaven.html

You will find the draft Australian protocols for treatment where past failure with protease inhibitors is specifically treated as a special case in extending Sof+Dac from 12 -> 24 weeks

fixhepc.com/images/misc/HCV-DAA-Protocols.pdf

If you use the tool at fixhepc.com/decision-support

And select GT1, F0, Failed Protease+Interferon+Riba

Then the Sof+Dac suggestion will come up as 24 weeks in line with the "24 weeks recommended for patients who have failed a protease inhibitor" note in the guidelines.


YMMV
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6 years 5 months ago #6564

I have now had a good look at these links and if I am understanding them correctly then I think I need to set the record straight.

The decision support tool shows, for a person genotype 1b, F0-F1, failed protease inhibitor+ifn+riba, that led+sof for 12 weeks = 98% SVR. It does not recommend 24 weeks for the led+sof combo. This is consistent with the Gilead trials for people who are tx experienced with a protease inhibitor.

*** In other words, my suspicions that Gilead fudged the duration of the led+sof combo have been unfounded, according to these recommendations. ***

For the dac+sof combo it is another matter. dac+sof does get a duration of 24 weeks with a 90% SVR outcome, obviously inferior to the led+sof combo for this cohort of people (protease experienced).

So that is a somewhat surprising find for me but hey, who am I to argue with it. Obviously somebody somewhere has formulated these recommendations for a reason. It would be interesting to know those reasons. One presumes that there were trials done on the dac+sof combo. The only trials I know about were the phase 2 trials done before Gilead rejected the BMS dac and decided to go with their own NS5A, ie. led. True enough, I believe that those trials were done for 24 weeks. The progress of dac has always been hindered by the lack of trial data after the split with BMS (except for geno3).

Anyway I am happy to get some clarity on this.
dt

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6 years 5 months ago #6566

GAJ - I hear your advice about getting expert help but don't worry. My long-suffering doc is in fact an expert of long standing experience.

I am just not the type to swallow any advice whole. I have to do my own due diligence. Well, I figure that at the end of the day it is MY body and MY life at risk so I better understand what is going on.
dt

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