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Post Info TOPIC: Cheesed off
Loopy Lisa


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Cheesed off
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Thank you everyone,

I am glad the options are improving! That is terrible that Australia has such a high genotype and they still don't have access either! I am blessed regarding my progression, my body seems to deal with the virus very well considering what I hear about other geno. 3 types.

I have never really found much about 3b, my quasi species. I think I have read only one other person that had it, and he failed treatment with cirrhosis.

Thanks for the info Mallani, always good to know the differences, and have it told simply, sometimes the medical information is alien when you don't have a medical background!

I feel much better after reading all your research and knowledge regarding the medicine to come. I can't imagine how some people have waited so many more years than I for an effective treatment.

I saw my gyno. the other day, he said I am a healthy young woman despite the hep, so he is optimistic regarding future attempts. This time I only need a shot to ovulate - control, and the embryo implanted. No more heavy drugs or lots of injections. I am genuinely Ok about the last failed attempt, they are only cells at that point after all. :) 

Thanks people, you are all wonderful!

L

x



-- Edited by Loopy Lisa on Saturday 9th of May 2015 07:12:05 AM

__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
mallani


Guru

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Hi Loopy,

Sorry your first attempt at IVF failed. Best wishes for next time.

I understand your frustration about the Geno 3's. In Australia, Geno 3a makes up 40 % of the HCV population. Many are cirrhotic and have tried Peg/Riba one or two times, and some for 48 weeks without success.

The NS-3 and NS-5A viral sites are quite different in Geno 3's compared with the Geno 1's. Thankfully the active part of NS-5B is similar, so the nucleoside NS-5B blockers (like Sovaldi) are effective against all genotypes.

Merck's new drugs (Grazoprevir and Elbasvir) are also pan-genotype. Ledipasvir is a poor NS-5A blocker, but Daclatasvir is better. Gilead's new pan-genotype combo should be available later this year. So, be patient.

Get your IVF sorted out and you'll then have options. Cheers.



__________________

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
Cinnamon Girl


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Hi Lisa,

Sorry your first go at IVF failed, let`s hope next time will be the one.

I understand your frustration with the current treatment options available to you, it`s been a long wait for you already. 

As a gen 3 you could do 24 weeks of Sovaldi + riba, rather than 12 weeks with the addition of interferon, although I suppose you`d rather avoid riba if at all possible.  As Marktq1 said, the new drug from Gilead, GS5816, is looking very promising in clinical trials across all genotypes so that could be a possibility for you at some point. 

Feel free to have a moan any time you like, we`ll still be here to listen!   Don`t despair Lisa, things will change eventually. 

Very best of luck to you next month with your IVF.  I`ll be keeping my fingers crossed for you and hoping for good news! 



__________________

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.

 

 
dragonfly


Senior Member

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Hi Lisa,

Sobusivir and Daclatisvir are proving to be the drug of success for Geno 3.  After 40 or so years and nearly fatal organ failure I cleared within 2 weeks; everyone on my round of treatment cleared and I only did 12 weeks with Riba.  I wish you luck - it might also help to find out if Holland has a compassionate uptake programme available and if not, lobby for it.  That's how I got the drugs otherwise in the UK you have to complete 2 SOC treatment before eligibility.  This does not make financial sense.

Nirmalee x



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Loopy Lisa


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Thanks Marktq, I feel much better after reading that. I just hope all these drugs are available soon. At this rate I will be 80 before we can access them! :*



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
Marktq1


Member

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Sovaldi /GS5816 is looking good for type 3's phase 2 results sowing up to 100% cure rates over 12 weeks it may be that hard to treat groups will still need Ribarvarin phase 3 study Astral 3 is complete and results will be in later this year From what I hear there are high hopes that this will be the most effective treatment to date especially for type 3's also phase 3 trials have started with sovaldi/GS5816/GS5897
As a possible 6 week treatment
So hope is on the horizon I believe that they may still be recruiting for this trial but I'm not sure


__________________

60 yo male cirrhotic fibroscan 23 base VL 105000 G2 alt250 ast 200 bil high started trial nov. 6 week results alt 32 ast 30 VL blinded other tests normal range
Loopy Lisa


Guru

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Posts: 895
Date:
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Hi everyone,

It has been a while since I posted. Well first IVF attempt failed. I am OK about it, no drama, due the second attempt mid this month.

I can't help but feel cheesed off today. I was reading about what is happening in regards to genotype 3, and not a lot!

The best outcome to date is 12 weeks of Interferon, Ribaviren and Sofosbuvir. I feel that not enough progress is being made for this genotype because we are a minority. Yet we have the most dangerous type in regards to fast progression and liver failure compared to over genotypes. Don't get me wrong my liver is doing great, but I am fed up today with the aches, pains, bloating, brain fog and all the other annoying symptoms. Also I really am not too happy to do that again considering my last side effects. The other option is Daclasvir and Sofosbuvir for 6 months and nasty side effects too. It is not really going as I expected, plus drug availability is still an issue here. I just want something to happen that makes a difference, especially in treatment times. I read today that a high viral count does lower chances with my genotype, so really feeling not too happy.

OK, I got it off my chest now, I needed to have a good moan as I feel frustrated.

L x

 



__________________

Genotype: 3b

VL.�over 15, 000 000

Failed TX 2014: Interferon/Riba.

Cured using Sof/Dak combination.

I can eat cake again! <3 
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