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Author Topic: 4 days left on Veikira Pak and Ribaviron  (Read 7611 times)

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Offline HazelAustralia

  • Member
  • Posts: 178
4 days left on Veikira Pak and Ribaviron
« on: March 05, 2016, 10:58:59 pm »
 Hi everyone:)

Well, that went quick! All of a sudden I have just 4 days left to go.

I won't lie - I have been really struggling with the anaemia - it did improve when the ribaviron was decreased, but my hemoglobin dropped again steadily once I began taking the ribaviron morning and night again - after a couple of weeks (?) of just taking it in the morning. The nurse told me last week that I can stop taking it altogether whenever I choose now so long as long as I let them know, but I feel like I'm so close to the finish line, I want to give myself the best chance. What's 4 more days in the scheme of things?

I think I've been making a few really obvious mistakes at work and certainly not getting so much done. I have been aware of that. Would I, in retrospect have told them that I'm on treatment? No. It's a very conservative town and I need to keep my options open. Although I'm really proud of those who have spoken up publicly, in this case, I feel like its better for me and my family to stay in the closet. I told my other manager, who was completely supportive and gave me three months unpaid leave after paying out all my sick leave and annual leave. But there's a different culture around that work, and she is a thoughtful and open minded manager.

I have also had a few down moments - very sudden and quite strong. I'm glad I've had someone to talk to in those times (or my cat, who has been wonderful!). Also, just reading through the forums has helped me regain my optimism! Thanks everyone.

I am so strong and optimistic mentally and raring to go with a couple of projects that I really haven't had the physical energy for, but I think this down time has given me the chance to go back to first base with what I'm doing on earth and what I want to focus on next. It's funny (I do have the impression that this forum is awash with gen X & baby boomer's) getting a new start at our age among all the life transitions happening - deaths, births, the whole shebang - unusual really, but priceless.

I am really wondering what it will be like for it to sink in - once I hear back from the last two blood tests. What will it be like and what's next?

Hope you are all having a good day,

Here's to strength  ;D, collectivity  ;) and treating Hep C  8)!

Hazel



« Last Edit: March 05, 2016, 11:22:50 pm by HazelAustralia »
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #1 on: March 06, 2016, 07:39:03 am »
I was sure I had commented on this, but I must not have posted it.

I found for a while I was feeling the effects of treatment and HCV slip away from me - I was aware of feeling better, stronger and healthier. Then I just gradually stopped thinking about  it and started living it.

It became the new normal. I don't tend to think a lot about how I am now. I just am.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline AussieRosa

  • Member
  • Posts: 226
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #2 on: March 09, 2016, 07:30:14 am »
Hazel! I had no idea you were so close to the finish line. I should have, knowing you were 4 weeks ahead of me, but it just snuck up suddenly. I'm sure you'll get over those down slumps once you've been off the Riba for a while and your bloods are back up to your normal again. I think being anemic for so long on top of the giant emotional upheaval of treatment can really get us down. Now you have to face the long wait for SVR. That will be another challenge, fraught with its own emotional pitfalls. I hope you stick around and share that with us. I've really appreciated your shout outs asking how I'm doing. It has made more difference to how I've been feeling than you can know. All the very best to you and wishing you SVR success.
Rosa
Gt 1a
contracted 1983
Fibroscan 6.1
Treatment naive
VL 2.97M
ALT 38
AST 47
Started Viekira Pak + Ribavirin Tues 19th Jan 2016
Week 4: VL Undetected!
March 5th Ribavirin dose reduction to 800mg from 1000mg
EOT April 11th 2016. VL Not Detected
12 Weeks post EOT: SVR12. Cured with a capital C!!
6 months post EOT: Undetected :-)

Offline HazelAustralia

  • Member
  • Posts: 178
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #3 on: March 16, 2016, 05:26:15 am »
....and another (drum roll) UNDETECTED at EOT for Viekira Pak!!!!



H.
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #4 on: March 16, 2016, 05:31:41 am »
Great news!
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline KimInTheForest

  • Member
  • Posts: 1,968
  • Believe in yourself
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #5 on: March 16, 2016, 12:23:33 pm »
YAY Hazel!! Well done. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Flaco

  • Member
  • Posts: 56
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #6 on: March 16, 2016, 04:44:27 pm »
....and another (drum roll) UNDETECTED at EOT for Viekira Pak!!!!
8) ;D ;D ;D ;D ;D ;D
Best Regards,
Jack

Diag 2001
Failed PEG-int/Riba 2002, 48 wks.
2015-16:
F4 compensated
VL 14.7 million
GT 1A
Alkaline Phosphatase(37-127 U/L): 12/23/15 216; 1/14/16 152; 1/29/16 103; 3/18/16 68; 4/1/16 70
SGPT (ALT) (15-78 U/L) 12/23/15 862; 1/15/16 753; 1/29/16 518; 3/18/16 48; 4/1/16 28
SGOT (AST) (9-44 U/L) 12/23/15 283; 1/15/16 226; 1/29/16 165; 3/18/16 24; 4/1/16 19
Start Harv 24 wks. 3/4/16
Undetected 2 weeks into Tx
Liver&metabolic nos. steadily improving since start TX
EOT 8/18/16

Offline AussieRosa

  • Member
  • Posts: 226
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #7 on: March 16, 2016, 08:32:26 pm »
Woohoo! That's the ticket. Congratulations, Hazel. And congratulations on your upcoming SVR12!
Rosa
Gt 1a
contracted 1983
Fibroscan 6.1
Treatment naive
VL 2.97M
ALT 38
AST 47
Started Viekira Pak + Ribavirin Tues 19th Jan 2016
Week 4: VL Undetected!
March 5th Ribavirin dose reduction to 800mg from 1000mg
EOT April 11th 2016. VL Not Detected
12 Weeks post EOT: SVR12. Cured with a capital C!!
6 months post EOT: Undetected :-)

Offline HazelAustralia

  • Member
  • Posts: 178
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #8 on: March 17, 2016, 02:41:32 am »
Thanks! I am so happy, I keep wanting to run in circles like a cartoon character and find myself grinning at strangers! I know this might be some kind of honeymoon stage, but I don't need it to last, I am just really happy!! I was holding back hope during treatment until one day, I felt like it had worked - the virus was gone. I think I wrote about it here. It was like the time when I knew I was pregnant with my son.
More good news - he has been tested and doesn't have hep c. Not only that, his immune system is so good that he also fought off the antibodies from his hep b immunisations and has to have them again!

I'm booking in for a ferritin test and hopefully a prescription for iron supplements next week - thanks Kim. I am also awaiting your book with much anticipation. Congratulations and thanks! Thanks for living a creative life and for all your posts.

Thanks Philly for being my first port of call when I was waiting to go on treatment - for making the process and what was involved clear for me in a simple and encouraging way. Thanks for your blog and for your interviews. Thanks for travelling to Cuba!

Thanks Flaco for your messages and for your thoughtful and beautiful icon/avatar, thanks for your best wishes.

Thanks Bill for your strong presence, your reassurance and belief in my treatment!

Thanks AussieRosa for turning up just when you did, and for being so positive and for reaching out to me too.

I wish I knew what happened for Supermom.

At the moment I'm not concerned about the test in 6 months to confirm sustained viral response - I'm free now and I'll probably be free then too.

Let it be so for all of us, and for those who it isn't - strength and patience for the next cure.

Best wishes everyone,

Hazel
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline AussieRosa

  • Member
  • Posts: 226
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #9 on: March 17, 2016, 05:51:42 am »
Your post made me smile from ear to ear. I really admire your grace and open heart, Hazel. Wishing you all the very best, and hoping this state lasts and lasts. Please stick around if you have the time. Your presence on the forum is much appreciated.
Rosa
Gt 1a
contracted 1983
Fibroscan 6.1
Treatment naive
VL 2.97M
ALT 38
AST 47
Started Viekira Pak + Ribavirin Tues 19th Jan 2016
Week 4: VL Undetected!
March 5th Ribavirin dose reduction to 800mg from 1000mg
EOT April 11th 2016. VL Not Detected
12 Weeks post EOT: SVR12. Cured with a capital C!!
6 months post EOT: Undetected :-)

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #10 on: March 17, 2016, 08:35:28 am »
You've always been a very positive force on the forum and that post was another example of it. Wishing you all the very best for SVR. You deserve it.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline NYCHEPCMAN

  • Member
  • Posts: 63
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #11 on: March 17, 2016, 03:01:42 pm »
Congrats and way to go!!!

I don't know Australia medicine - but I thought that SVR12 is now the gold standard so there shouldn't be a need to wait so long....

Congrats and Happy St. Patrick's Day!! 
GT 1b
VL 1,237,287
Diagnosed November 2015
alt 66 ast 35
F2 fibrosure
2/3/16 Started 12 weeks Viekira
Week 4: Hep C virus by PCR   <1.18 NOT detected, <15 not detected IU/Ml AST 18, ALT  25

Offline KimInTheForest

  • Member
  • Posts: 1,968
  • Believe in yourself
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #12 on: March 20, 2016, 01:15:01 pm »
I'm booking in for a ferritin test and hopefully a prescription for iron supplements next week - thanks Kim. I am also awaiting your book with much anticipation. Congratulations and thanks! Thanks for living a creative life and for all your posts.

Hazel

Hi Hazel. I shipped your book by air on Feb 23. So it seems to me it really should have arrived by now, 3.5 weeks later. I hope the post office didn't chuck it on a cargo ship after I paid for air... That has happened before. Let me know if it does not arrive really soon.

best,
kim :)
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline HazelAustralia

  • Member
  • Posts: 178
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #13 on: March 25, 2016, 06:49:01 pm »
Congrats and way to go!!!

I don't know Australia medicine - but I thought that SVR12 is now the gold standard so there shouldn't be a need to wait so long....

Congrats and Happy St. Patrick's Day!! 

Hi NYCHEPCMAN,

How are you going? Yes, it's the same in AU - EOT results are not taken as a 'cure.' Though my clinic is now moving to a 24 week, rather than 12 week test. I think this may be because of all the new patients who have just begun treatment after the government has made Harvoni freely accessible for everyone. I don't know that they factored in pathology costs, or whether individual hospitals and clinics are facing increased costs, but whatever the situation my (rural) clinic is clearly trying to cut back on pathology costs wherever they can. If I had a choice between a 3 month and a 6 month test, I'd chose the 6 month anyway, as longitudinal testing is where many trials fall down. So for now, I'm just living as if i'm cured, and I feel like I am, that's for sure.  Cheers, Hazel
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline HazelAustralia

  • Member
  • Posts: 178
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #14 on: March 25, 2016, 06:54:23 pm »
Hi Hazel. I shipped your book by air on Feb 23. So it seems to me it really should have arrived by now, 3.5 weeks later. I hope the post office didn't chuck it on a cargo ship after I paid for air... That has happened before. Let me know if it does not arrive really soon.

best,
kim :)

Hi Kim,

Our mail is terrible nowadays, and I think from past experience that it's especially bad between Canada and Australia, so I expected that it would take it awhile. But, good news, your book arrived Thursday and my son had collected it from the post office without mentioning it. I began reading it last night and for me, it's a wonderful premise and such an interesting meditation on the relationship between the body, the mind and our wider environment. I'm really enjoying it. Thanks!

all the best,

Hazel
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline KimInTheForest

  • Member
  • Posts: 1,968
  • Believe in yourself
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #15 on: March 25, 2016, 07:17:04 pm »
Hi Kim,

Our mail is terrible nowadays, and I think from past experience that it's especially bad between Canada and Australia, so I expected that it would take it awhile. But, good news, your book arrived Thursday and my son had collected it from the post office without mentioning it. I began reading it last night and for me, it's a wonderful premise and such an interesting meditation on the relationship between the body, the mind and our wider environment. I'm really enjoying it. Thanks!

all the best,

Hazel

I am so glad to hear the book arrived, Hazel! Thanks for letting me know. :)

kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Aladinsane

  • Member
  • Posts: 3
  • Take time for loved ones!
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #16 on: April 02, 2016, 12:14:18 pm »
Thanks for sharing your journey. I start April 6 on Viekira Pak and Ribovirin after a long battle with insurance issues. My type is 1a and this is my first treatment. I was infected in 1971 from a blood transfusion. I am very scared but now want to get this process going. Again thanks for the input.
Genome Type 1A
Contracted 1971 Trans-fussion
Approved for Viekira Pak & Ribavirin
Started treatment: 04/05/2016 Viekira Pak & Ribavirin

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: 4 days left on Veikira Pak and Ribaviron
« Reply #17 on: April 02, 2016, 05:21:29 pm »
A few of us have done the Viekira+RIBA combo here - I did 24 weeks worth and blogged the entire, sometimes boring, sometimes entertaining and sometimes anxiety inducing process. Link to blog is below, but be aware it stretches back to March 2015 and I wrote a LOT.

Last week I got the phonecall to let me know I was svr24 and that made everything worthwhile.

It's worth it.
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

 


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