Welcome, Guest
Username: Password: Remember me

TOPIC: Why am I afraid to take the medications?

Why am I afraid to take the medications? 5 years 10 months ago #8039

  • Ariel
  • Ariel's Avatar
  • Offline
  • Platinum Member
  • Cured, SVR 24
  • Posts: 1064
  • Thank you received: 3084
  • Karma: 31
Your writing touched me too Archer I am sorry for your loss and relate to some of your feelings.
I must admit I was scared of any tx after my last experience too. Thankyou for saying it out loud. Yes Pat1 I agree it's good to take a break sometimes to just chill this is overwhelming I think for us all at times.
Given this feeling, I have deactivated my Facebook for the duration of this tx and golly gosh what a release thats been l was sick to death of people liking pictures of waves and surf and even me with stuck on hair (I lost 2/3rds of my hair to peg/inf) and really just needed to chill away from the mad world of social media.
I like this forum. It's real. Aren't we fortunate to be able to share not just the quantitative and qualitative stuff but also some of our feelings in good company #love
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
The administrator has disabled public write access.
The following user(s) said Thank You: LondonGirl, pat1, Gaj

Why am I afraid to take the medications? 5 years 10 months ago #8043

  • Woobia 22
  • Woobia 22's Avatar
  • Offline
  • Junior Member
  • Posts: 34
  • Thank you received: 120
  • Karma: 2
Very sad to hear of your loss.

I have had a few dramas since we last spoke, basically I now have no Spec or help from my local hospital as they have said nothing they can do. My choice to tell them to shove it as I have had a gutful, I hope no one has to suffer what they have done to me. They have offered to give me meds to ease the pain and try to keep me as comfortable as possible.

I have started my 2 nd go at Sof and Del on Boxing day and hopeful this one is successful, I have 10 months worth so hoping I prove them wrong. Hope you start feeling better and be strong.

Barry
First diagnosed Nov 2012 with Hep C 1a End Liver disease
Failed peg and Sof/dac
Given 18 mths to live Aug 2014
Failed sof/dac July 2015
Sep 2015 given till March 2016 to live as nothing they can do
Sourced a supply of sof/dac from India told I was a fool by staff at SCGH
Been in a coma twice 2016 6 stays in Hospital
Last 4 weeks have been unreal back into life again
Hope No One else is treated like Shit by Med Specialists as the Nurse are UNREAL The Good Doc Freeman is genuine Barry Ashton

Barry Ashton
The administrator has disabled public write access.

Why am I afraid to take the medications? 5 years 10 months ago #8044

  • LondonGirl
  • LondonGirl's Avatar
  • Offline
  • Platinum Member
  • Posts: 1366
  • Thank you received: 2124
  • Karma: 17
:+1: Ariel
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
The administrator has disabled public write access.

Why am I afraid to take the medications? 5 years 10 months ago #8102

  • pat1
  • pat1's Avatar
  • Offline
  • Platinum Member
  • Posts: 340
  • Thank you received: 977
  • Karma: 15
Hi Barry
I was pleased to read that you have a new doctor and this specialist is working with you. All the best for treatment.
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
The administrator has disabled public write access.

Why am I afraid to take the medications? 5 years 10 months ago #8179

  • LondonGirl
  • LondonGirl's Avatar
  • Offline
  • Platinum Member
  • Posts: 1366
  • Thank you received: 2124
  • Karma: 17
How are you doing Archer?
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
The administrator has disabled public write access.

Why am I afraid to take the medications? 5 years 10 months ago #8468

  • Archer
  • Archer's Avatar
  • Offline
  • Senior Member
  • Brief is life...love is long..
  • Posts: 70
  • Thank you received: 176
  • Karma: 5
To everyone who responded to my post; I thank you for your kindness.

In truth, had I remotely imagined that it would invoke such concern, I would likely not have written. I think my condition seems to be improving - I can breathe better. I was helped by an exceptionally caring doctor and am grateful. I was also offered alternate medical counsel due to the intervention of another member. All these individuals actively engage with Buyer’s Club forum – reflecting its generous spirit & exceptional human service.

Barry, thanks for your reply, Christmas since we last spoke. Iv’e watched you for some time now mate, other side of the outback – doing it real tough. You’ve never spared yourself – with complications & hard news – picked yourself up & fought on – I take my hat off to you. Family first, I know – so do what you have to - but lighten up a little, you endearingly stubborn bugger – be kinder to yourself. At least you’ve got the meds now – I hope you feel better, and as it goes, have whatever you need. Often think of you & the family. take care.

There are many angry – who got warehoused by the beaurocratic bullshit. Did it not occur to them to implement some strategy even at cost, for most at risk - whilst they did their wheeling & dealing. Meanwhile we waited & watched out for each other – and hoped to last the distance. Had a call last week for advice from Adelaide. How long & silent has been this epidemic till the tsunami began to break over us – yet still how little people know about HCV and how it proceeds. A friend with young children died last year – her husband told me - don’t wait – keep trying – or they “will” just wait till each crisis – and eventually its too late.

So it may have seemed surprising, when my first post disclosed that I balked when I finally got the meds – but with my HCV gone so far - I feared that even the treatment might overload my liver. Which is why whenever I even begin to have more complications (like last week) I am perhaps overly cautious. Cirrhosis can go to shite - very quickly. Thanks to the Buyer’s Club selection and testing protocols, (excluding life’s statistical outliers) there seems little reason for an “informed” person to become so advanced with HCV, that the treatment might pose a significant risk.

So here is the missing link – an “informed” person. The bureaucracy has now done its dealing – treatment is available. But how well informed are the public – about their diagnostic probability, the trajectory, complications & treatment of this disease. For years I saw nil health medium addressing HCV and more recently - poorly disseminated. Given the life threatening potential of this disease - How many undiagnosed people out there are really sufficiently informed?

Life and circumstances can change in a second. Do we yet know enough about what damage the virus is doing even in its earlier stages. Personally; Even if I was an early F1, F2 or F3 and the SVR numbers on Buyer’s Club treatments stack up – if I was well informed about HCV – and could conserve the funds from other life expenditures – I might not wait in the Public treatment queue - I would be inclined to purchase the treatment and eliminate this virus from my system at the earliest opportunity.
Fem. Gen 1a.18.4 kPa. IL28b - CT. Cirrhosis 4B/c. MELD 11. Portal Hypertension. Ascites. Varices. (Gr.3). post surgical Coma 2011- Tx denied. 15/09 - INR 1.2 platelets 58 (150-450) albumin 32 (35-50) bilirubin 40 (2-20) ALT 183 (0-45) AST 281(0-41) GGT 39(0-45). Liver lesions AFP 16 <8.
Last Edit: 5 years 10 months ago by Archer. Reason: add
The administrator has disabled public write access.
The following user(s) said Thank You: DrJames, Joy, LondonGirl, Vororo, pat1, CJ, Paul-Jarman-facebook, Gaj, Tina-Hill-facebook, CC2B

Why am I afraid to take the medications? 5 years 10 months ago #8603

  • pat1
  • pat1's Avatar
  • Offline
  • Platinum Member
  • Posts: 340
  • Thank you received: 977
  • Karma: 15
Yours is a gracious response and I am really glad that you did take the time to reply. I admire your determination and spirit. It was pleasing to read that your symptoms had abated somewhat. You asked the question '.But how well informed are the public...' This is still a hidden disease and when I told my sisters recently that I had hepc they were completely unaware of the ramifications. Despite being told to wait for new medications over the years and with the announcement of the recent PBS listing I even now would not change my game plan. The Buyers Club has transformed mine and many lives.
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
The administrator has disabled public write access.
The following user(s) said Thank You: DrJames, LondonGirl, Gaj

Why am I afraid to take the medications? 5 years 10 months ago #8607

  • CJ
  • CJ's Avatar
  • Offline
  • Platinum Member
  • Posts: 373
  • Thank you received: 419
  • Karma: 4
Hi Archer,

I have only just come across your posts, I'm SO GLAD you posted.
I've been so hoping you would, as the people here, as you've now found out, are so supporting. :)

You are a very strong, determined woman, you've been through so much, please keep posting, it does help to know there are so many who care.I know everyone will be wishing & hoping for you to come out of this hep free!

I also didn't realise Barry was on this forum now aswell. Glad he's got some orals, hope it helps him.

please call me any time you want, you know I'm here for you if you want to talk.
Don't get frightened & then be alone. please.
No one should be alone with their fears.
Yours are very real, but I do think these meds will help you.

Don't ever stop the meds, you're going to win Archer, I know it #love

Love Cindi xo
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
The administrator has disabled public write access.
The following user(s) said Thank You: DrJames, pat1, Gaj

Why am I afraid to take the medications? 5 years 10 months ago #9215

  • Archer
  • Archer's Avatar
  • Offline
  • Senior Member
  • Brief is life...love is long..
  • Posts: 70
  • Thank you received: 176
  • Karma: 5
Recently a friend suggested we might have judged the PBAC too harshly for initially denying approval of sofosbuvir – that we may have underestimated the negotiations needed to broker a deal sufficiently cost effective to treat so many HCV sufferers. Greatly respecting my friend – I gave this due consideration.

After all, I have been banging on about the immorality of a bureaucracy which approved the less costly simeprevir – but appeared silent on the warehousing of patients intolerant of IFN/simeprevir - seeming to leave them to die. I deplored a seeming failure to establish contingencies for those most at risk - succumbing to HCC, life-threatening complications & end stage disease.

Two weeks ago a very dear friend lost his battle with cirrhosis. After nearly four years of hospital visits, TACEs, and suffering – the wake celebrating his too short life was held only six days ago. During this time I received an interstate call about a friend whose symptoms were also becoming worse. Hospital admission & days of countless tests to determine why more than two months following his TACE, he was becoming so rapidly ill - They found more HCC and he too passed within days.

Two of several friends - who should have much earlier received the DAAs. I can find no rationale for such loss whilst treatment negotiations were being conducted. Maybe the prejudice with which we are “stigmatised” has generated some disregard for our welfare. There are cancer sufferers being given treatment matching Gilead’s costs simply to buy them more time – yet we were denied equal resourcing for a cure.

Surely the costs should not have been prohibitive. If the Buyer’s Club could get affordable pharmaceuticals from alternative sources – then why could the Government not have sourced, tested and provided safe treatment for this group of patients. Should Free Trade provisions bind a Government, when an avaricious Corporation is holding its citizens’ very lives to ransom.

For what seems as long as I can remember - this is the twilight endured by sufferers for whom IFN was ill advised. Now there is rejoicing – and rightly so; because the DAAs are approved. Thankfully humanity and sanity amongst all parties has finally prevailed.

But the casualties amongst those who were denied treatment when most at risk – are still mounting. They have not yet magically disappeared with the advent of DAAs. The “silent” legacy of the current health ministry.

Ironically, in the midst of such a tragic week - I received the news that I am UND. I feel grief for the many lost – yet also for the first time a tenuous daring to hope - that if I am very lucky - I might possibly survive. But however this crap shoot turns out - to be given a last throw of the dice - would not have been possible without the courage and tireless work of Dr Freeman & the Buyers Club.
Fem. Gen 1a.18.4 kPa. IL28b - CT. Cirrhosis 4B/c. MELD 11. Portal Hypertension. Ascites. Varices. (Gr.3). post surgical Coma 2011- Tx denied. 15/09 - INR 1.2 platelets 58 (150-450) albumin 32 (35-50) bilirubin 40 (2-20) ALT 183 (0-45) AST 281(0-41) GGT 39(0-45). Liver lesions AFP 16 <8.
Last Edit: 5 years 10 months ago by Archer. Reason: ok
The administrator has disabled public write access.
The following user(s) said Thank You: DrJames, Joy, LondonGirl, coral, Vororo, Gaj, IRMA88, Hazel

Why am I afraid to take the medications? 5 years 10 months ago #9247

  • Joy
  • Joy's Avatar
  • Offline
  • Elite Member
  • Posts: 218
  • Thank you received: 265
  • Karma: 0
Dear Archer, there's so much pathos in your words it's hard to find my own.

But I have to say it. CONGRATULATIONS on becoming UND. #flower
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.
The administrator has disabled public write access.
The following user(s) said Thank You: Archer

Why am I afraid to take the medications? 5 years 10 months ago #9250

  • LondonGirl
  • LondonGirl's Avatar
  • Offline
  • Platinum Member
  • Posts: 1366
  • Thank you received: 2124
  • Karma: 17
Ironically, in the midst of such a tragic week - I received the news that I am UND. I feel grief for the many lost – yet also for the first time a tenuous daring to hope - that if I am very lucky - I might possibly survive. But however this crap shoot turns out - to be given a last throw of the dice - would not have been possible without the courage and tireless work of Dr Freeman & the Buyers Club.

Hey Archer, so pleased to read your good news and I also feel your grief for those who did not access the medicines before too much irreversible damage was done , more than you can know. #love
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
The administrator has disabled public write access.
The following user(s) said Thank You: Archer

Why am I afraid to take the medications? 5 years 10 months ago #9301

  • CJ
  • CJ's Avatar
  • Offline
  • Platinum Member
  • Posts: 373
  • Thank you received: 419
  • Karma: 4
Hi Archer,

I'm so happy to hear the result of UD for you, really happy for you.
I agree with you how we were just left to get sicker & sicker by the Gov.

But now you will find yourself healing more & more.
It is wonderful news
Hang in there girl. :)

Love Cindi xo
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
The administrator has disabled public write access.
The following user(s) said Thank You: Archer

Why am I afraid to take the medications? 5 years 10 months ago #9381

  • pat1
  • pat1's Avatar
  • Offline
  • Platinum Member
  • Posts: 340
  • Thank you received: 977
  • Karma: 15
Archer, I agree with your every word and feel the sadness of knowing that others have not survived the ramifications of this insidious virus and even now are still struggling. It was wonderful to read that you are now UND. For me, It was a strange feeling to learn of a similar result for myself and I am still to absorb the implications fully. Surely now is a time of hope for all.
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
The administrator has disabled public write access.
The following user(s) said Thank You: Archer

Why am I afraid to take the medications? 5 years 10 months ago #9460

  • CJ
  • CJ's Avatar
  • Offline
  • Platinum Member
  • Posts: 373
  • Thank you received: 419
  • Karma: 4
Totally agree Pat,
Sadly too late for some, but for others on the brink, a life saver.
x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
The administrator has disabled public write access.

Why am I afraid to take the medications? 5 years 10 months ago #9652

  • CJ
  • CJ's Avatar
  • Offline
  • Platinum Member
  • Posts: 373
  • Thank you received: 419
  • Karma: 4
Hi Archer,

Hope you see this, I know you get so busy with work, but how are you going?
I'm sure many here also wonder too?

Hope you're doing better. :)

Love Cindi x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
The administrator has disabled public write access.
Time to create page: 0.094 seconds

Copyright © 2015-2020 FixHepC

Back to Top