Fitz starts REDEMPTION 3 Trial

This topic has 306 replies, 32 voices, and was last updated 7 years, 10 months ago by fitz.

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18 July 2016 at 11:17 pm #21035
beaches
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- Guardian Angel
@beaches
Well said, Fitz, love your work.
From what I have learned, your week 4 results are pretty standard for GT1a.
That doc can play her silly games, they won’t impact your medical outcomes.
Thanks again Dr James for assuming we are smart enough to understand the information you so readily provide to us. Knowledge is power.

Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
19 July 2016 at 1:55 am #21037
Sven
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@sven
Hi Fitz
They are all the same, high and mighty. They have never made so much money in their lives until the HCV made them rich, famous and inconsiderate. If you don’t remember my GI said the same thing but relented in the end. I must say I can do this without them but if he wants to come along while I fight dragon, I will let him. That being said he will not dictate to me as he tried to the last time, as you and I spoke about it. Yes I am a little miffed at these inconsiderate jack-asses whom only made a name for themselves at our expense. How dare they say they’ll take you off the list! However, you did the right thing in rolling with it, and taking your actions out of sight from them.
Good job and DO NOT WORRY, you’ve got this.

Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count – 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
19 July 2016 at 2:14 am #21038
beaches
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- Guardian Angel
@beaches
I must say I have not struck that attitude recently and the staff at the RPA liver clinic are friendly and helpful and treat you like a human being. I only struck a shitty attitude from that silly red headed bint who got offended back in 2004 when I said thanks but no thanks to interferon.
They were flat out when the DAAs were first available on the PBS (pharmaceutical benefits scheme) but around about now their job satisfaction levels would be pretty high

Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby
19 July 2016 at 2:23 am #21039
Sven
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@sven
Yes I agree it is not the attitude to take if at all possible and never do it in front of them. My GI is like that, but has now decided to do all the blood work and monitoring of the generics.
It is always the norm, we catch more bee’s with honey than vinegar!!
Sorry if I offended anyone with my post.

Contracted HCV 1980’s
Geno Type 1a
F3 ( doc says once treated I’ll be F2 maybe F1)
Meds shipped 6/17/2016 arrived early 7/2016

Viral count – 3,471,080

4 week quantitative bloods: August 17, 2016. I have been diagnosed as <15 (told undetected)

8 week quantitative bloods: September 14th. I have been diagnosed as <15 (told undetected)

11 week PCR RNA Qualitative bloods: September 26th 2016 – Undetected

December 19th 2016: Cured!
Viral count: zero!!!
2018 viral count: still zero!
Cured!
19 July 2016 at 3:25 am #21040
sabrecat
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- Guardian Angel
@sabrecat
fitz wrote:

July 18, 2016 – Last Friday’s meeting with my Gastroenterologist was a mixed bag. She bopped into the exam room first thing Friday morning with ~~an iced Starbucks coffee in her hand,~~ some humility in her heart and mind, smiling and looking sharp and ready for the day.

Hi Fitz,

I hope you don’t mind changing what you wrote – I think it would have changed what followed. Like HCV, forgetting we are people is a modern day epidemic too, I think.

Hope the virons fall into line quickly for you.

Jeff
19 July 2016 at 3:41 am #21041
fitz
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- Guardian Angel
@fitz
beaches wrote:

I must say I have not struck that attitude recently and the staff at the RPA liver clinic are friendly and helpful and treat you like a human being. I only struck a shitty attitude from that silly red headed bint who got offended back in 2004 when I said thanks but no thanks to interferon.
They were flat out when the DAAs were first available on the PBS (pharmaceutical benefits scheme) but around about now their job satisfaction levels would be pretty high

In her defense, I will say that outside of the “I’ll just take you off treatment” statement, it was otherwise a very positive appointment. She is monitoring treatment, and I sincerely appreciate the work she is doing in that respect. She’s human – and perhaps inwardly regretted saying that immediately – I don’t know. She may be sticking her neck out a bit, and reluctant to rock the boat by ordering tests outside of the formulary schedules.

Still the power play was completely unnecessary, and if it happens again she’s fired on the spot.
19 July 2016 at 3:45 am #21042
Gaj
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@gaj
Hi Fitz,

You were there so will have a better idea of the undertones of the discussion but your GI’s comment to “take you off treatment” if you do not reach particular milestones sounds more like lack of knowledge of the current DAA treatments. With the old interferon type treatments that was the process followed but these days the recommendation generally seems to be to review and consider whether to extend. So if her speciality isn’t hepatology, perhaps ignorance rather than arrogance?

Edit: you posted while I was making coffee. Use of arrogance to disguise ignorance isn’t done from a position of power of course, although I’m sure the perpetrator wishes that was so.

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
19 July 2016 at 3:53 am #21043
Greedfighter
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@greedfighter
Hi Fitz,

I previously read you say it took a year to see a GI specialist. So I understand if you can’t easily change Doctor’s.

If you can change easily, I would. My understanding is you have your meds in hand. How exactly would she stop you from taking them? This woman is very arrogant. A GI specialist should know that 4 week tests of VL is standard procedure, unless it’s a problem with your insurance.

If it’s a hassle, I would just stay with her then, and wait it out. But certainly demand VL tests at 4, 12 and 24 weeks post treatment.
19 July 2016 at 4:23 am #21044
fitz
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- Guardian Angel
@fitz
sabrecat wrote:

fitz wrote:

July 18, 2016 – Last Friday’s meeting with my Gastroenterologist was a mixed bag. She bopped into the exam room first thing Friday morning with ~~an iced Starbucks coffee in her hand,~~ some humility in her heart and mind, smiling and looking sharp and ready for the day.

Hi Fitz,

I hope you don’t mind changing what you wrote – I think it would have changed what followed. Like HCV, forgetting we are people is a modern day epidemic too, I think.

Jeff[/quote]

I appreciate your sentiment Jeff, but I can’t write that line for her. Only she can do that.
19 July 2016 at 5:54 am #21046
mgalbrai
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@mgalbrai
My specialist at the University of Arkansas Med Center insisted on tests at 4 week intervals until I was undetected, with one more at 12 weeks EOT. She said I could test at EOT 24 if I wanted. I did and I did.
I am fortunate to have a PCP and GI who are considerate of my feelings. What is the harm in ordering another test for you?
Very inconsiderate.
m

Curehcvnow@gmail.com
http://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
19 July 2016 at 6:43 am #21049
Meg
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- Guardian Angel
@meg
Bravo Fitz way to go! What a nerve to dare say ” I will take you off treatment” – as if she had the power to. Haha!
Oh well in this case she doesn’t thank goodness! I also agree on the ” arrogance equating ignorance” sometimes and little some doctors know what we are up to here! With Dr Freeman’s top of class knowledge and experience, together with GP2U staff and all of you as support peers, perhaps we have turned into wonderful ” anarchists” – in the best sense of the word of course ( non violent and free)! Looking forward to your 8 week blood test results my friend – the dragon will probably be out of sight! Fingers crossed.

Blood transfusion in 1992 – Diagnosed in 2007
Tx naive -G1b – F1
VL 2.270.000
ALT 40
Start tx June 4th/2016 with DAAs – Sof/Led from India
Bloods on two weeks of tx (June 18th)
AST 17 – ALT 10 – GGT 19
Virus UND
Bloods on six weeks of tx (July 16th)
AST 17 – ALT 8 – GGT 12
Virus UND
EOT on August 8th (did 9 weeks and 3 days)

SVR 4 Virus UND (September 7th)
AST 13 – ALT 5

SVR 14 Virus UND (November 12th)
19 July 2016 at 7:06 am #21051
fitz
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- Guardian Angel
@fitz
Ha! Ya’ll are awesome (all ya’ll)! So proud to be a part of this crew!
19 July 2016 at 8:05 am #21054
re_roll
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- Guardian Angel
@re_roll
fitz wrote:

We are so fortunate to have Dr James, the physicians at GP2U Telehealth, and Monkmed and their physicians. No matter where we are in the world, we have a crack medical team behind our recovery, and access to the best cutting edge medications available. Taking charge of our own recovery with that team behind us provides such a wonderful and real sense of empowerment.

F….you know this already……but not being privy to your conversation and not knowing what state you
reside in, IMHO DIY is the best method. I can get labs done every day w/o doctor’s orders, if need be.

FIXHEPC.com is all you need or for anyone else in the world.

For your GI to say what she said is not uncommon. Most doctors think they are on a pedestal and
we ( the patients) need to look up to them for guidance. F that if you have common sense and the
determination to get well, which you do.

My GI is a Gilead lap dog as most GI’s are. I waved my 4 and 8 week lab results under his nose
when he asked “how much were the generics?”

Only you can make the decision to continue w/her or not. DIY for the win “with a little help from
your friends” (credit to the Beatles, in case some people don’t know)….e.

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
19 July 2016 at 12:45 pm #21059
sabrecat
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@sabrecat
Hi all,

this recent part of the thread just reminds me of how powerful language can be. My career with HCV has been reasonably okay in regard to the manner I have been shown by health professionals. This is aside from the “Jeff couldn’t cope [with interferon plus the other stuff]” many years back. Ever since, things generally okay as I said. RPA wise – distinction grade.

Many years ago I had an unrelated conversation with a solicitor about compensation and damages (read Court pity and willingness to acknowledge someone has been hurt), and he said a big problem with many conditions is that people appear healthy, and I guess you look that way with HCV until the old boot starts to give out. Sometimes I think we walk a thin edge sympathy wise. Not just straight out assumptions about the manner in which we have become HCV positive, but expectations that we can be warehoused until medications become more affordable.

The people I see generally have me checking their weeks record so that I am on the same page as them, even if the request to see me is just to get some advice about their Centrelink or even a local bus timetable. I am lucky though as the people I see are such that they often can misinterpret things that are said, so I have be be conscious of this automatically.

Not sure if I am getting the message across, but just saying language is all important to me, I feel bad enough having HCV to begin with.

Yours

Jeff
19 July 2016 at 3:54 pm #21062
fitz
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- Guardian Angel
@fitz
Sorry Jeff. Still not quite fully understanding your intended message I’m afraid. I value directness, so just come right out and hit me over the head with it if you have to. I promise I won’t run away.

I’ve noticed you Aussies (and Kiwis as well) sometimes tend to speak in exceedingly polite and indirect terms (especially when you are disagreeing with something,) rather than coming right out and saying what you are thinking. This is certainly a matter of cultural style, but for we Americans who tend to be right up front with things, it can be a bit daunting attempting to unravel your pleasant code to get to the heart of things.
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