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Hep C Discussion Forum -> General Discussion -> Advice or second opinion?
Post Info TOPIC: Advice or second opinion?
Flower Child


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RE: Advice or second opinion?
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Thanks for the additional clarity.   

Daklinza and Sofosbuvir seem like an ideal option for her genotype (3a).  But this is cautious optimism until testing is done.   Thanks for info on ultrasounds.  I started to read about the ultrasound and fibroscan tests but noticed it was leading to uncharted territory so have been sitting on it for now.  Thanks for the info!   

 



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~Rebecca

Support for: 52yo, Geno 3a, F1. Tx: Dak/Sov-12 wks SOT: Dec 2015. VL 1mill at SOT

VL~58 - taken 5 days after start; VL UND @ 2 wks; UND 1 mos; UND EOT
dragonfly


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I agree with all the advice given here.  An ultrasound can only show basics such as fluid on the belly, portal hyper-tension, lesions and micro or macro nodules. I don't know where you live but this drug has only been shown to be effective with Sobosvir which is the main component of the therapy.  A diagnosis can be a shock, I know when I got mine I was in a haze.  My doc said have you ever heard of Hep C?  I got no more info at that point but a referral to a consultant who didn't have a clue either.  The key to this is to arm yourself with reputable information before you see someone else so that you can ask relevant questions.  I recommend again the UK site the Hep C trust which is staffed by people who have undergone a variety of treatments but most recently this one.

Good luck,

Nirmalee



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Flower Child


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Thanks for clarifying y'all.  I was unsure what to think or believe...  especially since they haven't done any tests except full blood work, which was just a few days ago.  I started wondering if this treatment plan was courtesy of a foreign country because I couldn't find info here.  

It seems like they jumped way ahead of the game by mentioning daklanza at all, in depth or with certainty. Not sure if it was via a doctor or someone on a treatment team, likely the latter.  Still seems irresponsible.  She is one of the most brilliant people I know but stress causes this Misunderstanding...  And now is not the time to make assumptions. Thanks again, for clarity and for links.   



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~Rebecca

Support for: 52yo, Geno 3a, F1. Tx: Dak/Sov-12 wks SOT: Dec 2015. VL 1mill at SOT

VL~58 - taken 5 days after start; VL UND @ 2 wks; UND 1 mos; UND EOT
Cinnamon Girl


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Hi Rebecca,

I`m very surprised at this and I definitely think your friend should seek another opinion from a doctor who is experienced and up to date with Hep C treatments. 

I was just going to give you a link to the full prescribing info for Daklinza but I see Malcolm has now given you the information.   

I agree that your friend may have misunderstood.  smile

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
mallani


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Hi Rebecca,

Monotherapy with Daklinza (Daclatasvir) is not approved. The FDA has approved Daklinza for use with Sovaldi for 12 weeks in Genotype 3.

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm455888.htm

Results are not very good for Rx-naive cirrhotics.

Ultrasound is not very good at diagnosing cirrhosis, or fatty liver for that matter. Liver biopsy or Fibroscan is the only accepted way of diagnosing cirrhosis.

She needs a full work up before treatment is offered.

I'm sure your friend misunderstood.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Flower Child


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Please let me know if I should (or should not) question this. My friend went to an appointment for blood work.  Doctors told her they are going to try putting her on four weeks of Daklinza by itself.  She has not had an ultrasound yet (later this month). Genotype is 3a, treatment naive.  Her blood work results are not in for at least another week.   

The reason I am questioning this is because she hasn't had an ultrasound so how do they know she doesn't have cirrhosis or fatty liver?  She has not taken other exams (only blood work).   And while I think Daklinza is definitely an ideal option, I am unsure why they would tell her for four weeks (and by itself) before knowing more info. It is very possible my friend misunderstood or misinterpreted most of this due to information overload.  

However, if she didn't misunderstand this, should I encourage a second opinion?   Also, is there any literature or science that states Daklinza can be used by itself to treat geno 3a for 4 weeks regardless of cirrhosis or fatty liver? I have found nothing to indicate 4 week treatments are approved (USA).  I trust the doctors but am unsure if she misunderstood this or if this needs a second look as she is in a new place.   Any info. or feedback is appreciated.  Thanks!  

 



__________________

~Rebecca

Support for: 52yo, Geno 3a, F1. Tx: Dak/Sov-12 wks SOT: Dec 2015. VL 1mill at SOT

VL~58 - taken 5 days after start; VL UND @ 2 wks; UND 1 mos; UND EOT
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