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TOPIC: Joan-Awaiting New Drugs

Joan-Awaiting New Drugs 3 years 10 months ago #1441

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Hello All

My name is Joan and I am awaiting the arrival of Sof/Dac. I have been informed that the order was placed last Monday, hopefully they will arrive in 2 weeks 3 at latest. I have been HCV for 40 years and have been affected with fatigue, nausea and weight loss. I had to give up my part-time job a year ago. My specialist has suggested I start treatment meaning the only available one being Interferon. Which I have never taken because the side effects were too harsh. I am grateful to Dr Freeman and team for having set up the Buyers Club as I would still be waiting for the announcement of the 'new drugs' on the PBS. Now I have the opportunity to have a cure sooner rather than later and prevent more progression of HCV.
I have been reading peoples stories of their experience of Sof/Dac and find it very informative and helpful as I prepare my mind and body for the 12 week treatment. Thank you all Joan
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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Joan-Awaiting New Drugs 3 years 10 months ago #1458

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Welcome to the club, Joan :P Good luck!Joan wrote:
Hello All

My name is Joan and I am awaiting the arrival of Sof/Dac. I have been informed that the order was placed last Monday, hopefully they will arrive in 2 weeks 3 at latest. I have been HCV for 40 years and have been affected with fatigue, nausea and weight loss. I had to give up my part-time job a year ago. My specialist has suggested I start treatment meaning the only available one being Interferon. Which I have never taken because the side effects were too harsh. I am grateful to Dr Freeman and team for having set up the Buyers Club as I would still be waiting for the announcement of the 'new drugs' on the PBS. Now I have the opportunity to have a cure sooner rather than later and prevent more progression of HCV.
I have been reading peoples stories of their experience of Sof/Dac and find it very informative and helpful as I prepare my mind and body for the 12 week treatment. Thank you all Joan
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Joan-Awaiting New Drugs 3 years 10 months ago #1465

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Yes welcome Joan. It was a long 3 weeks for me - but well worth the wait. More energy already, and I'm only 6 days into treatment.
NSW Australia. Genotype 1b 30+ years, F0-F1, VL 91,000 Feb 2015 (740,000 in 2010), Tx naive.
Ordered Sof/Dac from Buyers Club 21 Sept, received 14 Oct.
Virus UNDETECTED at 3 weeks AND 12 weeks (EOT) AND SVR4 AND SVR12 AND SVR24. :-)
A thousand thankyous to Dr James and the amazing FixHepC team.
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Joan-Awaiting New Drugs 3 years 10 months ago #1498

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Hey Joy!! I'm as well 6 days into treatment...Keep me posted...I feel good aswell... :) :) excitingJoy wrote:
Yes welcome Joan. It was a long 3 weeks for me - but well worth the wait. More energy already, and I'm only 6 days into treatment.
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Joan-Awaiting New Drugs 3 years 10 months ago #1542

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Hi Joy
I was reading your first post and my story is similar. I was definite about not going on Interferon and got sick of waiting for New Drugs on PBS. I saw Greg Jefferies name mentioned on ABC and contacted him but was still waiting for 'new drugs'. I feel very empowered now I have made this decision and you posts are encouraging as so far you have no side effects. I look forward to hearing about your journey..
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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Joan-Awaiting New Drugs 3 years 10 months ago #1543

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Hello All
I have been reading the Patients posts and it is reassuring to realise that others have suffered from similar symptoms that I've had for a long long time. Such as dizziness, pressure on right side, like liver is about to explode, dry eyes, urinating often..on and on. I had never thought that it could be Hep C related and is comforting to know that I am not alone and I may be relieved of a lot of these symptoms once I start the 'new drugs'. Thank you all
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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Joan-Awaiting New Drugs 3 years 9 months ago #1781

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Hello
thought I would make a post…just to keep me in practice..this is all new to me posting on forums and its a little strange, however, I don't want to feel isolated and need to have contact with other people with HCV who are going through treatment. I had contact with FixHepC buyers club yesterday and my drugs are in the process of testing and I should receive them by Monday next week.

Thats great news…although I have gone from a sense of empowerment to feeling apprehensive and I am fearful of the side effects of the drugs although there is a slim chance that I may not have any. I am 55 kilos and have a very 'clean diet' and am not sure how my body will process the drugs. I see this all, the roller coaster, as part of the process, of pre-treatment…. the relief, sense of empowerment, positivity, fear, uncertainty, not wanting to feel sick, anymore, wanting to clear the virus, having energy and a cure. On and On it goes.
These are the things that are going through my mind as I am waiting. I have no doubt that I have made the best decision for myself to purchase the drugs and wouldn't change it. I just want to express the mixed emotions of pre treatment.
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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Joan-Awaiting New Drugs 3 years 9 months ago #1786

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Hi Joan, if you are feeling isolated join the FB page Hepatitis C Treatment w/o Borders. It is full of hugely supportive members and full of the latest developments.
Regards Archie
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Joan-Awaiting New Drugs 3 years 9 months ago #1788

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Thanks Archie will have a look.
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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Joan-Awaiting New Drugs 3 years 9 months ago #1790

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Hi Archie,

Could you post a link to the Facebook page?
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Joan-Awaiting New Drugs 3 years 9 months ago #1791

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Hang in there

I went thru the same anxiety issues like u

Look forward to get cured! As high as 90 percent!
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Joan-Awaiting New Drugs 3 years 9 months ago #1794

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The roller coaster seems to be part of it, Joan, certainly for me
i found it a lot easier when I ignored it, but that will only work for so long

Now i stress about how damaged my liver is and pore over previous and current blood results
Sometimes I feel all good and ready for anything, but then I'm close to tears knowing that I'm a good candidate for cancer if the treatment doesn't work

it's a bit of a long road, but the end is in sight for you
be thankful you didn't go ahead with the interferon
You didn't miss out on anything there other than misery
All indications are that the side effects of these meds are very very mild in comparison or i wouldn't be doing it (or waiting like you )
52 y.o. G3a for about 30 years
Previous tx 2004 interferon/ ribavarin
2004: ALT 624 AST 263

Pre tx test 23/10/15: ALT 153 AST 128 VL 11 849 493
6/11/15: Sof/ dac started
26/11/15: ALT 41 AST 41
7/12/15: ALT 36 AST 30 Virus undetected

2004 biopsy F3
Fibroscan appt Jan 11 2016.
Last Edit: 3 years 9 months ago by Bloot. Reason: i waffle on :-P
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Joan-Awaiting New Drugs 3 years 9 months ago #1826

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Hey Joan!

I had the same, we've been all trough it. I as well, did all by myself, encapsulating and stuff...don't know how you will do it..
My weight is 55 as well, but things are going well...don't be scared...

I send you lots of strength!! Life
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Joan-Awaiting New Drugs 3 years 9 months ago #1827

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It will not take so long to get the meds, Joan!
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Joan-Awaiting New Drugs 3 years 9 months ago #1835

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Thank you all for your replies. I figured the roll-coaster was part of it all..the pre treatment anxiety…it is reassuring to know that I am not the only one. I do have a sense of humour and am able to have a laugh at myself. Once the anxiety passes. Humour can really help me get through anything. And I am noticing that the uncertainty doesn't last very long.
I am encouraged by all your experiences and am heartened by your openness to share and help each other.
Yesterday I met with my specialist and nurse at the liver clinic. My specialist confirmed that he & nurse will be monitoring me through the treatment and I feel totally supported by them. I had my first base line bloods done and I feel reassured and confident and ready to take on the next few months. I should be on treatment this time next week. Sooo…just waiting.
GT2B Diagnosed 1989
Started Tx 6.Nov.2015
F3 Fibroscan 17: April.2015
Alt PreTx: 186 Ast PreTx: 157 VL PreTx: 733,000 27.10.2015
Alt Week 4: 14 Ast Week 4: 28 VL Week 4: UND 7.12.2015
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