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Once upon a time... 3 years 6 months ago #3588

  • DrJames
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Once upon a time it used to be OK to call a spade a spade. In fact Australia and Australians' used to take pride in it. Now it seems we have been cowered into submission in a blancmange of political correctness.

The thing I love about this forum is that it's real, raw, uncensored, warts and all. We do censor "buy my stuff" unrelated SPAM but other than that we let people tell is like they see it. Thanks to the mods for all your hard work BTW.

So WTF is RTFM?

I'm a doctor by trade but a programmer by passion. RTFM is a geek thing. Here's the meaning:

en.wikipedia.org/wiki/RTFM

Holy crap you can't say that. Well actually you can, and it needs to be said.

It might seem harsh but today I had a lot of people ask for their blood results days before they could possibly be available. I had a lot of other people ask for things that are answered on this site in the FAQs or the GP Cheat Sheet or the Genotype Specific Treatments.

All these things are important but I also had a handful of patients who needed urgent attention but were in danger of being drowned in the noise.

There are two search tools on this site. Sadly they are separate. You can search the forum from the search tab. You can search the site from the top bar. Please do that before you ask directly. Think about this: 1000 patients asking a quick 1 minute question a day takes over 16 hours and leaves no time for anything else. No I don't get 1000, but I do get over 300 emails a day.

I've noticed that only a few people seem to read the blog . There is quite a bit of speculation on the forum about stuff that is already detailed there.

BTW I have way over 10x patients than have completed the polls so if you have not put your results in please do.

Thanks for reading.
YMMV
Last Edit: 3 years 6 months ago by DrJames.
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Once upon a time... 3 years 6 months ago #3604

  • LondonGirl
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I totally get this - Good point.

In our defense ;-) Sometimes on small tablet type things, it's not always easy to find the relevant info, will try harder :-)
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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Once upon a time... 3 years 5 months ago #3650

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Dear James, Dear Moderators,

There is a vast amount of information / advice on the fixHepC web site. But a lot of this is hidden in the various threads.

May I humbly suggest putting your RTFM plea on the Front Page?

Also (and please forgive me for saying it), the message carried by the "Ant and the Grasshopper" clip seems rather negative.

May I also suggest instead to promote more your aim of "Everyone, everywhere, with noone left behind."

Best Regards,

Vororo.
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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Once upon a time... 3 years 5 months ago #3652

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Awwwww, I LIKED the Ant and Grasshopper thing. I'm telling you it helped motivate me get off my ass and buy a plane ticket to Australia, different things work for different people, but if it motivated me to get moving then maybe it can motivate others. You sometimes need to boot people up into taking control of their own lives in a situation like this, where a lot of us have been indoctrinated to do as whatever some doctor or insurnace company says to do, such as, "oh just wait a little bit longer, come back next year and we'll have another look then".

I like it, its a motivator, people can get plenty of warm and fuzzy positivity and encouragement within the forum once they get going, but first we've got to them up off the couch and either on the plane or on the phone to Mesochem or something.

Just my 2cents, Mate.
GT 2b; since 80's, no prior tx, sofosbuvir and daclatasvir compounded from API's at Kingswood Pharmacy in Sydney, started tx nov 6,2015, undetected at 4 wks, UND at 8 weeks, UND at 1 week after EOT, UND at 4 weeks after EOT and UND at 8 weeks after EOT. " I feel GOOD!! I knew that I WOULD!"
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Once upon a time... 3 years 5 months ago #3656

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Yeah, I also really liked that clip when I first saw it...

...And it really made me appreciate that the fixHepC crew were going out on a limb and maybe even risking their own necks to help people like us.

...And they were even doing their best to make their web site a friendly place where no-one is scared and nothing is sacred.

So I'm not really suggesting to get rid of it. Maybe just move it to the BLOG or push it further down the page a bit with some more direct info first?

Cheers,
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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Once upon a time... 3 years 5 months ago #3659

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I loved it too, quite brilliant and so fitting to the situation. I guess people interpret things differently, excellent that it motivated you 2b.

I personally think the grasshopper and ant clip could also be taken to the level of thinking that ants have power in numbers. So if fellow hep c suffers continue to join together, give their voice to fight for the right for people to have treatment at a price that is accessible and affordable, then the grasshopper/big pharma wont squash future ants.

I quite honestly marvel at the time, effort and expertise that has gone into this site. Dr Freeman's care, effort and willingness to help people is quite unique and a gift to hepc suffers.

I second LondonGirl's comment "I totally get this - Good point" :)
reg nurse and wife of:
genotype 3 (probably since '75), f4, cirrhosis, Tx naive
Oct '15 - Dx hcc
Pre Tx -- VL: 330,000......, AST 202, ALT 137, Bil 24, ALB 30
04/11/15 -Sof & Dac
30/11/15 -VL: 80................, AST 28, ALT 18, Bil 12, ALB 32
06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36


.
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Once upon a time... 3 years 5 months ago #3660

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Cheers Vororo, well said --> , ....."And it really made me appreciate that the fixHepC crew were going out on a limb and maybe even risking their own necks to help people like us....And they were even doing their best to make their web site a friendly place where no-one is scared and nothing is sacred"
reg nurse and wife of:
genotype 3 (probably since '75), f4, cirrhosis, Tx naive
Oct '15 - Dx hcc
Pre Tx -- VL: 330,000......, AST 202, ALT 137, Bil 24, ALB 30
04/11/15 -Sof & Dac
30/11/15 -VL: 80................, AST 28, ALT 18, Bil 12, ALB 32
06/01/16.-VL: not detected, AST 29, ALT 16, Bil 13, ALB 34
01/02/16 -VL: not detected, AST 28, ALT 16, Bil 13, ALB 36


.
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Once upon a time... 3 years 4 months ago #8977

  • re_roll
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I had a half hour to burn and came across this thread and decided to give my 2 cents. I am assuming that
most members and nonmembers that view this website are probably a little bit older in age like myself. I do
not belong to Farcebook, Twatter, or any other social sites. My land line is 24/7. My cell is another story....
invited guests only. I am not anti social.......maybe on the quiet side and definitely private. Naivete or ignorance
(in a good sense) could be one reason some people ask repetitive questions because they do not know how
to use the search button or have the experience on how to surf the website.

Lack of time is a bullsh*t answer. If you have Hep C, you better make time to get rid of the disease and feel good
and normal again. Finally, laziness. I think other people have mentioned this topic. IMHO, laziness should not be
rewarded. At a minimum, if one is going to ask a question, preface it with..." I searched but could not find exactly
my situation". If you lied on searching, your Hep C will not be cured is what I've been told. :evil:

Dr Freeman is a very busy man. We are fortunate to have him supporting this cause, We need him. Try not to
burn him out.

Whomever is running this site gets all my respect and kudos. One suggestion: Put the FAQ's in a conspicuous
place or put it in RED or something to highlight it. I think it can be expanded, also. Anyhow, I will get off of my
soapbox, now. I hope everyone who has Hep C is cured one day. I was told by a doctor that 10 years from now
Hep C shots will be available in your GP's office like the flu shot. We can only hope, nonwithstanding Gilead's
patent , money, or influence.
contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24
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Once upon a time... 3 years 4 months ago #8978

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Good point re-roll.

There is now a heck of a lot of good advice hidden here that many new people miss. In my spare time, I am collecting up some posts that could go into a new FAQ.

But there are now over 8500 posts here (and over 400 from Dr James), so I am trying to figure out how to do it automatically...
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).
Last Edit: 3 years 4 months ago by Vororo.
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Once upon a time... 3 years 4 months ago #8998

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I have been doing a bit of filing work creating subsections where that are a lot of posts in that section relating to a similar idea. Most of the work has been in the experts corner so far, but I think it's getting a little easier to find stuff.

The search widget in the top bar searches both the site and the forums. The forum search only covers the forum.
YMMV
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Once upon a time... 3 years 4 months ago #9002

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I totally get the Doc's point but also appreciate what others have said here. I've been here a few months and I'm still 'finding' threads I didn't know existed. Having an 'autistic' brain (i.e. Asperger's) I get overwhelmed easily and try to search for answers before I ask but forget so much straight away. I take things very literally, so if someone says, 'look on the page in the left column blah, blah,' I'll desperately search the left column and not 'see' the one on the right. :ohmy:
Even this has been posted for a month +, just found it accidentally!
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16

Dec '15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb'16 VL UND #woohoo!
AST 24
ALT 26
GGT 50H
Last Edit: 3 years 4 months ago by Chejai. Reason: typo
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Once upon a time... 3 years 1 month ago #14202

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James-Freeman-facebook wrote:
So WTF is RTFM?
I'm a doctor by trade but a programmer by passion. RTFM is a geek thing. Here's the meaning:
en.wikipedia.org/wiki/RTFM

Holy crap you can't say that. Well actually you can, and it needs to be said. .

Good for you for keeping it real! Gotta love a doctor who's not afraid to tell it like it is.
G1a dx'd in 1992, Biopsy F2 VL 8mill +. Tried tx with Interferon/Riba, back in 2008 didn't last long it felt horribly ugly!! I stopped tx, after 5 weeks!!
Started tx 6/1/16 with Harvoni.
12 Month Labs= UND
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Once upon a time... 3 years 1 month ago #14203

I remember this thread from ages ago - made me smile it did :P
Very relevant points made.
SVR 24
Last Edit: 3 years 1 month ago by Tina-Hill-facebook.
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Once upon a time... 3 years 1 month ago #14226

  • mgalbrai
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YOAOAYA
This email address is being protected from spambots. You need JavaScript enabled to view it.
forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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Once upon a time... 3 years 1 month ago #14254

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mgalbrai wrote:
YOAOAYA

G1a dx'd in 1992, Biopsy F2 VL 8mill +. Tried tx with Interferon/Riba, back in 2008 didn't last long it felt horribly ugly!! I stopped tx, after 5 weeks!!
Started tx 6/1/16 with Harvoni.
12 Month Labs= UND
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