Forum Replies Created
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Vale Paul Kantner
https://m.youtube.com/watch?v=c2yQLXTuctA
We’re losing too many.
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
Part of the role of a good CEO is to maximise returns for shareholders, while remembering that most shareholders are not merely profit takers but review their investments for longer term value. Another part, the non performance related reason for their substantial renumeration, is the ability to step aside should strategic change be required. I notice he remains as executive chairman.
I watch this development with interest but the realisation that the most we are likely to see is a tack to windward.
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
Great news Pauli!
Both from Monkmed and your specialist.
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
Much the same thoughts I had at the start Magpie, though my GP ran week 2 LFTs that gave me confidence that something was happening. This are nothing like the bad old days, you will find the Riba takes a couple of weeks to kick in but if you tolerated it okay previously then it shouldn’t be too bad. I can see my haemo, etc. results dropping and notice the ‘drag’ but am nowhere near anaemic and still have far more energy than pretreatment.
So kick back, relax and be grateful you seem to have minimum sides.
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
May I suggest you send them a very polite letter of refusal stating in a calm business like manner why you have chosen others to oversee your health needs?
Nothing inflammatory (however satisfying that would feel), just a clear outline of the ways they didn’t meet your expectations and how your new team does. So while you could comment on the waste of NHS time and money in lecturing you, your consultant didn’t lie…..they misdocumented the facts to your GP (I’m assuming you meant the letter stating no fibrosis?)
Probably end up in the bin just like a letter telling them to piss off but there is some chance it will be noticed or at least sit in your file in case someone more enlightened reviews that in the future.
Push back but also sew seeds for change.
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
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
Excellent post LondonGirl, a shining example to others of taking control of your health and responding to abusive behaviour within the system. While it may not be appropriate to thank your new centre on here please make sure you do so to their managers and others you meet. Praise in the right places can only add to good results achieved.
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
Hmmm, on further reflection peg/riba is sub optimum for everyone regardless of their genes.
While it’s reasonably cost achievable to help our mums the best scenario is that PBS doesn’t end up discriminating against 9% of HCV infected people to save a few bucks.
Anyone know when the final rules get announced?
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
Hi AA,
Once you see your 4 week results many of the demons will lose their powers, and then things just improve week to week. While I still have very occasional moments of doubt, at 10 weeks there is more confidence than ever felt during prior Tx. I can just sense my body winning the fight and regaining health, as you will!
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
Hi LG,
Fantastic news about your new consultant! So glad you found one who’s on your team.
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
I almost feel like ripping open the rant banana at the moment, but then I realise with sadness that in slightly less than 5 weeks Australian GPs like Pat’s (and some others) will be able to prescribe DAAs on PBS either with a bit of extra training or in consultation with a specialist…..and I wonder about some of the specialists too. The omens as to the success of this do not look entirely bright to me for a couple of reasons:
– Maybe they are being honest in knowing nothing about HCV; in this case I suppose there is the possibility that they can learn about it but from the stories I’ve read here there doesn’t appear to be any enthusiasm to do so.
– They are just anti-generics and will suddenly become knowledgable and compliant with the new requirements once they are able to supply PBS approved patented medications.
In either case, I sense a lack of care for their patients health and wellbeing mixed with what appears to be distaste and judgemental behaviour regarding patients with HCV. Not good signs!
OTOH I do know and hear of good GPs (and specialists) who are working with what we have now or watching with interest and learning as mine seems to be. I hope they turn out to be just the tip of the iceberg indicating the vast silent majority and in the future those with HCV can go to see their doctor with the expectation that they will be treated the same as someone with bronchitis or similar.
Edit: Rereading this 13 months later I realise I was far too pessimistic and that Australia’s doctors have stepped up to the challenge admirably. From the latest available Kirby Institute report on treatment:
The total number of DAA initiations in 2016 (March-December) is estimated to be between 30,390 and 33,390.
http://www.ashm.org.au/Documents/Kirby_HepC_Newsletter_Issue6.pdf
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
Pat, so sorry to hear that your GP put you through additional stress at a time when they should be supporting you.
But glad to hear that GP2U were able to assist both with prescribing and support with your chemist. Thank goodness they were available for you and it is reassuring to hear that at least some medical practices still have their patients interests at heart.
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
Thanks. As you say, very interesting.
I don’t think mine was rechecked so just glad I’m on Dac which is pangenotypic.
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
Janis!
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
I was wondering about this the other day when you posted the new Decision Support Tool.
i.e. For genotypes 2/4/5/6 is there any advantage when making a decision on treatment for the new Australian guidelines that recommend Peg/Riba with Sofosbuvir? Eg “if the patient has TT and maybe CT then follow EASL guidelines and prescribe Sof/Dac”
Or would using Sof with the Peg/Riba negate any advantage there?
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
