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TOPIC: Treatment Duration

Treatment Duration 2 years 10 months ago #11871

  • 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 2 years 10 months ago #11909

  • 2b
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I have not heard that, but i'd be concerned given your level and condition. The only answer I would trust on this would be from Dr. Freeman, I think by now he has probably cured more people with the new DAA's than anyone else in the world, so I doubt you could get a better answer from anyone else. Just personally, given that condition, I would tend to err on the plus side and go further unless Dr. Freeman says you don't have to. Best of luck to you, you are in a good place for treatment and advice here.
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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Treatment Duration 2 years 10 months ago #11914

  • Sirchinenge
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I would presume your original Consultant looked at the research at that time and came back with
24 weeks as you're F4 with a very high score -I presume the fact you're UD from early on and the latest
research suggesting the extra 12 weeks has very little bearing on the end outcome he's now telling
you 12 weeks is fine.

If you'd all ready paid for 24 weeks Id stay the course and do at least another 4 with your score Id
probably do the extra 12 you have zero to lose.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
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Treatment Duration 2 years 10 months ago #11942

  • abathnot
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Thank you 2b and Sirchinenge. Hopefully I can speak to Dr Freeman (my original doc) soon to clarify this. As I was expecting to get the next 12 wks on Aust PBS (Sovaldi) and buy Dac from Kingswood, I hope this is not the reason for changing treatment duration. Makes you wonder - triage?
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 2 years 10 months ago #11951

  • DrJames
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You consultant's advice would appear to be referencing this recent small study:

www.ncbi.nlm.nih.gov/pubmed/26786792

Where you can read the words "all .... svr .... regardless of duration"

However you might also read it more closely and see

ALL = 19

DURATION = 12 or 24

If they randomly divided the 58% F4s into 12 and 24 week groups we would have exactly 5 people in 1 group and 6 in the other.

If 1 F4 person had failed in the 12 week group that would have reduced the success to 80%!

GT2 is probably the easiest to treat given that Sof+Riba will get a 97% SVR rate - much higher than for GT1 or GT3.

That said you are cirrhotic so you really want to get this right the first time.

If at some point in the future a decent sized study comes out showing that F4 GT2 patients get the same results on 12 vs 24 weeks the worst case outcome is that you have taken 12 unnecessary weeks and wasted $1500 AUD.

Psychologically if you are one of the small minority that don't SVR at least you won't be beating yourself up for not taking 24 weeks.

If it was me I would do 24 weeks.
YMMV
Last Edit: 2 years 10 months ago by DrJames.
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Treatment Duration 2 years 10 months ago #11957

  • abathnot
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Thanks Dr Freeman. It appears my specialist has made a huge decision based on a tiny study. That's very unnerving.
Thankfully, because of all your work and care and fixhepc, I have the opportunity to decide my treatment path.
I'll buy more meds and continue to 24 wks.
As I am cirrhotic, I hope my specialist will agree to continue monitoring me at the liver clinic even though I've gone against his advice.
Thanks again.
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 2 years 10 months ago #11965

  • DrJames
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The entire knowledge base for GT2 is small. If you use the decision support tool at fixhepc.com/hcv and put in your data in the results section there is a button called [Show Trials] - here is everything I could find prior to that new small study.
Sofosbuvir Ribavirin

NAIVE
default: svr: 95%, trials: FISSION 97% (58/59) FUSION (12wk) 96% (25/26) POSITRON 92% (85/92) VALENCE 97% (29/30) Aggregate 95.1% (197/207)
w16: svr: 100%, trials: FUSION (16wk) 100% (23/23)
F4
default: svr: 83%, trials: FISSION 91% (10/11) FUSION (12wk) 60% (6/10) POSITRON 94% (16/17) VALENCE 100% (2/2) Aggregate 82.9% (34/41)
w16: svr: 78%, trials: FUSION (16wk) 78% (7/9)
FAIL
default: svr: 92%, trials: FUSION 92% (24/26) VALENCE 91% (30/33) Aggregate 91.5% (54/59)
w16: svr: 96%, trials: FUSION 96% (23/24)
F4
svr: 88%, trials: VALENCE (7/8 )

Sofosbuvir PegIFN-α Ribavirin

NAIVE
default: svr: 95%, trials: LONESTAR 96% (22/23) BOSON 94% (15/16) Aggregate 94.8% (37/39)

Sofosbuvir Daclatasvir

NAIVE
default: svr: 92%, trials: UN-NAMED www.ncbi.nlm.nih.gov/pubmed/24428467 92% (24/26)
w24: svr: 96%, trials: AI444040 (24wk) 96% (25/26)

So the entire body of knowledge for Sof+Da is only 71 patients small.... Of that 26 + those in the new study did 24 weeks. The impact of F4 and Past Treatment experience are just not known, so need to be extrapolated from other genotypes.

In time your specialist may be proven right - or wrong. The problem is that right now we (doctors) don't know precisely so are all just making guesstimates.
YMMV
Last Edit: 2 years 10 months ago by DrJames.
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Treatment Duration 2 years 10 months ago #11968

  • abathnot
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Thanks again Dr Freeman for all this info. By the way, are you able to write PBS prescriptions or does it need to be done by my specialist? Also, I've been trying to make an appointment online with you but can't do so. Are you not available via GP2U at the moment?
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 2 years 10 months ago #11979

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No worries.

Yes, I can write scripts, and yes I am seeing patients, just booked out at the moment. Send me an email james at etc and I will fit you in somewhere.
YMMV
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Treatment Duration 2 years 10 months ago #11980

  • abathnot
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Sorry Dr F but I don't know your email address
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 2 years 10 months ago #11985

  • abathnot
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I've sent you an email Dr F. Sorry for all the bother but my anxiety level is through the roof at the moment.
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 2 years 10 months ago #11986

  • mgalbrai
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Try to relax A...easy for me to say.
Hard for you to do, I know.
Your healthcare couldn't be in better hands.
He will "fix" you!
M
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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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Treatment Duration 2 years 10 months ago #11987

  • abathnot
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Thanks M for your kind and calming words. Insomnia is causing me the most grief and I don't think I'm alone with this nasty side effect. I wish you all the best.
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 2 years 10 months ago #11989

  • mgalbrai
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I had major problems sleeping as well.
Stress and worry, HCV, stomach issues and rage at a broken system combined to make sleeping very hard.
Lack of sleep left me a walking, fatigued zombie.
The whole time seems like a nightmare now.
It's over for me.
Soon it will be for you as well.
M
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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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Treatment Duration 2 years 10 months ago #11990

  • Sirchinenge
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Your clinic has a duty of care; If you choose to take on board another Dr's opinion they
will and have to continue too monitor you.
Sob/Dac from Oct 29 2015
Geno 1b
Fiberscan 9.9 Pre treatment
Fiberscan 7.4 week 10
VL 1.3 million pre treatment
Week 2.5 VL 96
Week 5.5 VL 17
Week 10 VL UD
SVR 3 UD
SVR 16 UD
Cured:
All liver functions in normal ranges.
Last Edit: 2 years 10 months ago by Sirchinenge.
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