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Author Topic: waiting game blues  (Read 8744 times)

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Offline sapphire101

  • Member
  • Posts: 238
  • "Stop worrying and start living"
waiting game blues
« on: June 30, 2015, 11:44:53 pm »
Spoiler alert if you are still on treatment and looking ahead.
Post treatment has its own issues!

The good news is that at six weeks post my side effects are gone. I have my energy back and my dry itchy skin has rebounded. That should be enough...but it is not. Nothing really counts except that final lab draw. My physician will let me celebrate at my 12 week end of treatment labs - the first week of August. I am not allowed to say "I am cured" until 24 weeks post treatment at my last lab draw with is due in late October.

What drives me nuts is all the waiting.
I did have a similar mental slump when I was on treatment at the half way point so maybe this is a pattern for me? I just get fed up which is a bit silly because there is really nothing that can be done.

It was October 2014 when I first learned that the FDA was going to release the new medications to the public and while I knew immediately that I wanted to be part of this, I did not realize that the treatment is really just a small part of the big picture.

Logged
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: waiting game blues
« Reply #1 on: July 01, 2015, 12:10:44 am »
Good luck Sapphire! I will start the waiting game in 4 weeks' time.

best,
kim
Logged
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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: waiting game blues
« Reply #2 on: July 01, 2015, 07:46:37 am »
everything crossed fpr you
Logged
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 lolacme

  • Member
  • Posts: 55
Re: waiting game blues
« Reply #3 on: July 01, 2015, 09:19:40 am »
Thinking of you sapphire. Being on treatment finds me inpatient as well. On Saturday I will start my 4th week of Harvoni. Why do you have to wait SVR 24 before you can call yourself cured? Is it because its Viekira Pak?  They say SVR 12 is when you can call it cured with Harvoni but honestly I do not think I will believe until an SVR 24 is obtained. 
Logged
diagnosed-early 2000's
F3 grade 2-as of Dec. 2012 genotype 1a
2 attempts at Inteferon based tx stopped after 7 weeksX2
Started Harvoni for 12 weeks monotherapy-June 13, 2015 Added Ribavirin June 24th
Beginning AST 117 ALT 261 VL 932876

Offline sapphire101

  • Member
  • Posts: 238
  • "Stop worrying and start living"
Re: waiting game blues
« Reply #4 on: July 01, 2015, 10:08:08 am »
Thank you all for the support. I need to embrace my true self- the impatient patient!
This too shall pass...


Lola my practitioner is part of a specialty liver clinic that is from 'the big city' and they have a satellite clinic here in the sticks or I would be up the creek for liver care. I feel that their 24 week SVR requirement may be a hold over from other treatments. They have been doing this for decades and were primarily harvoni until they agreed to treat me. I was the first Viekira test case for them.
Not about the medicine, but if I could get through the insurance approvals without being at higher fibrosis level of 3 or 4.

I don't know if I will ever believe this works. I hope someday I can.
Logged
Sapphire101
Genotype 1a Fibrosis level 1
Viekira Pak with ribavirin 12 weeks
Pre treatment  VL  1.7 million, AST 45 ALT 65
EOT VL not detected, AST 21 ALT 21
12 week SVR not detected,24 week SVR not detected.
Cured! Class of 2015

Offline GLCII

  • Member
  • Posts: 127
Re: waiting game blues
« Reply #5 on: July 04, 2015, 10:34:43 am »
sapphire101

The waiting game blues isn't something that is just a pattern for you. I think we're all feeling it. I'm waiting on my 4 week post EOT test now. I got an email saying my lab results were in and my heart started racing. The crazy thing is, I knew it wasn't the main test but only the CBC, Hepatatic Panel & Creatinine. So you're not alone.
Logged
Pre Tx (VL 12043488) ALT 52/ AST 39
Harvoni Start Date 03/12
2 Week in Tx Results HCV RNA Detected, less than 15 IU/mL. ALT 19 / AST 19
4 Weeks in Tx Results HCV RNA Not detected. ALT 21 / AST 18
12 Week in Tx Results HCV RNA Not detected. ALT 17 / AST 19
--------------------------------------------------------------
Post 12 Week EOT Tx ALT 19/ AST 19 (Undetected)
Post 24 Week EOT Tx ALT 19/ AST 15 (Undetected)
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