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TOPIC: Treatment duration confusion

Treatment duration confusion 3 years 8 months ago #11878

  • abathnot
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Hi there. This is my first post ever on any site so not sure what I'm doing. I am GT2b with cirrhosis (f4, Fibroscan = 29.5). Have been on sof/dac since 17 Dec 2015 obtained from Kingswood Compounding via the wonderful Dr Freeman. Have been monitored by a specialist at a major Sydney hospital liver clinic since starting sof/dac and have been undetected since week 8 blood test. Original treatment duration was 24 weeks due to cirrhosis. Yesterday my specialist advised that I only need 12 weeks treatment due to latest European test results. I am concerned cutting my treatment short by 12 weeks as originally advised. Has anybody else heard of these new findings?
G2b, F4 cirrhosis (fibroscan 29.5 kPa), no prior treatment. Started sof/dac (from Kingswood) 17 Dec 2015 for 12 weeks. Continued with Sovaldi (via PBS) and dac (from Kingswood) 10 Mar 2016 for further 12 weeks.
16 Dec 2015 = ALT 84 AST 99 VL 326,914
19 Jan 2016 = ALT 19 AST 30 VL 22
16 Feb 2016 = ALT 19 AST 27 UND
31 May 2016 = ALT 20 AST 29 UND (EOT 24 wks)
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Treatment duration confusion 3 years 8 months ago #11879

  • Gaj
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Hi Abathnot & welcome,

You are doing fine with posting here. There was some new data out of Europe late last year which he may be referring to.
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: 3 years 8 months ago by Gaj.
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Treatment duration confusion 3 years 8 months ago #11882

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Thank you Gaj. I am delighted and grateful to be UND at 8 wks, however, am very very worried about stopping at 12 weeks as for the last 6 months, it has been the norm to do 24 wks for people with cirrhosis. What do you think?
G2b, F4 cirrhosis (fibroscan 29.5 kPa), no prior treatment. Started sof/dac (from Kingswood) 17 Dec 2015 for 12 weeks. Continued with Sovaldi (via PBS) and dac (from Kingswood) 10 Mar 2016 for further 12 weeks.
16 Dec 2015 = ALT 84 AST 99 VL 326,914
19 Jan 2016 = ALT 19 AST 30 VL 22
16 Feb 2016 = ALT 19 AST 27 UND
31 May 2016 = ALT 20 AST 29 UND (EOT 24 wks)
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Treatment duration confusion 3 years 8 months ago #11883

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Okay, just realised you are genotype 2b and the data I was thinking of is for 3a.

Im not a Dr but assuming your specialist is a hepatologist then he is presumably up to date and knows your history particularly regarding your cirrhosis and the best option for you and your health. However, he appears not to have convinced you of the veracity of his information. If it was me, I would be telling him that he needs to show me the data that is causing him to change his mind at this stage of my recommended treatment and convince me as to why I should now change that treatment. After all it would be my health and wellbeing that was effected by his sudden change.

It appears you have about two weeks of the current script left? Are you already in receipt of the second script?
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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Treatment duration confusion 3 years 8 months ago #11884

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I should note that it may be that he feels that the outcome of 12 weeks treatment for you is likely to be more beneficial than the full 24 weeks. But again he really should be explaining that in a way that you can understand the impacts and consequences, and agree with.
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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Treatment duration confusion 3 years 8 months ago #11888

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The above is assuming the specialist was the original prescribing doctor, who should be you first contact.
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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Treatment duration confusion 3 years 8 months ago #11889

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I totally agree with you. I need to be convinced. He caught me off guard yesterday, I didn't ask the appropriate questions and he's always in a hurry. I have 11 days sof/dac left and yesterday I was expecting to get a PBS prescription for the next 12 wks of Sovaldi and buy 12 wks of Dac from Kingswood Chemist. I have the prescription for Dac. In Australia, Genotype 2 can only get Sovaldi and Ribavirin on PBS (not sof/dac). Am going to try and make an appointment with Dr Freeman asap. I'm sure he'll know what to do. Again thank you so much for your help.
G2b, F4 cirrhosis (fibroscan 29.5 kPa), no prior treatment. Started sof/dac (from Kingswood) 17 Dec 2015 for 12 weeks. Continued with Sovaldi (via PBS) and dac (from Kingswood) 10 Mar 2016 for further 12 weeks.
16 Dec 2015 = ALT 84 AST 99 VL 326,914
19 Jan 2016 = ALT 19 AST 30 VL 22
16 Feb 2016 = ALT 19 AST 27 UND
31 May 2016 = ALT 20 AST 29 UND (EOT 24 wks)
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Treatment duration confusion 3 years 8 months ago #11892

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I can understand how being confronted with that sort of information can throw you, had the same thing happen to me. My advice Is to make a short list of any questions before talking with either of them. Work your way through questions, adding others as they come up. The doctor has his notes to refer to and so should you, far too hard to remember everything when he is discussing something as important as your health with 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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Treatment duration confusion 3 years 8 months ago #11897

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I usually have dot points to discuss but didn't this time cause was just expecting to collect script for next 12 wks and pick up copy of 8wk bloods. Hope to talk to Dr Freeman soon. Thanks
G2b, F4 cirrhosis (fibroscan 29.5 kPa), no prior treatment. Started sof/dac (from Kingswood) 17 Dec 2015 for 12 weeks. Continued with Sovaldi (via PBS) and dac (from Kingswood) 10 Mar 2016 for further 12 weeks.
16 Dec 2015 = ALT 84 AST 99 VL 326,914
19 Jan 2016 = ALT 19 AST 30 VL 22
16 Feb 2016 = ALT 19 AST 27 UND
31 May 2016 = ALT 20 AST 29 UND (EOT 24 wks)
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