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Author Topic: Bitter-sweet victory!  (Read 13462 times)

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Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Bitter-sweet victory!
« on: March 02, 2016, 10:21:57 pm »
I was genotype 3a, F-score 0-1.
Treatment naïve.
Treatment: Sovaldi & Ribavirin - Rx secured through The Foundation.  God bless you folks at the Foundation.

First bloods after starting treatment - went from 19M+ to 120.
Was undetected from then on.

I did not react well to the Ribavirin and became anemic.  My doctor suggested dropping the dose from 1000mg per day to 600.  I suggested 800 and the doctor agreed.  My suggestion was due to fear of relapse - I will tell you why at the end of this.

My anemia was getting worse even with the reduction in dosage on the Ribavirin.  The last month of treatment was pretty bad.  Terribly tired and felt very weak.  With 9 days left of treatment, I went to my doctor and asked to go down to the 600mg that was originally suggested for the remaining few days.  Again, the doctor agreed.

1 month post treatment labs showed immediate improvement in the anemia.  I was almost back to normal in that regard.  At the same time, I absentmindedly scratched a small bump on my leg, which left a pinhole size wound on my leg that wouldn't stop bleeding for 2 full days.  The blood was literally coming out like water.  Ice and pressure only stopped it momentarily.  You can imagine how ridiculous I felt with a spot bandaid on the wound, and a full ace bandage wrapped overtop of it and around my thigh to keep constant pressure on a pinhole size wound.

I did some research and found out that Ribavirin blocks Vitamin K which is essential for coagulation.   I happened to have some Garden of Life Raw Vitamin K in my frig - don't ask me why I had it, but anyway - miracle of miracles, I took it, and the next morning the bleeding had stopped.

My doctor said that the 3 month lab results were the point where if I was to relapse, this would be the point where it would most-likely show up.

I just saw my 3-month results online - UNDETECTED!

It also showed my Hemocrit to now be high - but only .8 out-of-range, so I will be stopping the daily dose of vitamin K and see if that resolves that issue.

The doctor also said I would need more labs at 6 months, 1 year, and once a year for 5 years.

My husband fought the dragon before me, and was virus free immediately and remained so up until his 3 month labs.  He had no trouble with the medications at all.  In fact, he had more energy and zest for life than he had had in a long time.   He had bad cirrhosis though, and relapsed.  I now know all to well, based on my personal experience through him, why the virus is called 'the dragon'. 

From my perspective, it is called the dragon because it sleeps inside you, and depending on your situation, IF you don't defeat it, but merely wake it up, it will ravage you with the speed and accuracy that the fire-breathing myth destroys a humble village.

My husband not only relapsed but developed infiltrative HCC that ravaged him so fast that by the time treatment for that had been worked out and was about to begin he was killed by the dragon.

His experience is where my fear of relapse stems from.

Aside from the great work of the doctors involved in both our cases, Gilead who developed the drugs, and the Foundation for making them available to both of us, I thank my husband for what appears to be my victory over the dragon.  Without his strength and encouragement I'm not sure I would have had it in me to continue the fight.  His hope for both of us never wavered.

I hope everyone moves swiftly to be tested and treated, and I hope the resources are available to help them begin that life-saving journey.

I will post back as I know more -

Until then, Fight the good fight, and get healed! 

As Tiny Tim would say, God bless us, one and all!



« Last Edit: March 02, 2016, 10:36:52 pm by CureSeeker »
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Bitter-sweet victory!
« Reply #1 on: March 02, 2016, 10:25:58 pm »
Congratulations!!!! You are free



Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Bitter-sweet victory!
« Reply #2 on: March 02, 2016, 10:38:23 pm »
Thanks so much, Scout! :)
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Bitter-sweet victory!
« Reply #3 on: March 03, 2016, 10:41:26 am »
Hi Cure,

I'm so sorry for your loss.  But I celebrate your victory regarding your undetected status.
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Bitter-sweet victory!
« Reply #4 on: March 03, 2016, 06:47:09 pm »
CureSeeker, yes, it is a bitter-sweet victory, but it is a victory.  I am sure your husband is smiling at your undetected status! Keep us posted, FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Bitter-sweet victory!
« Reply #5 on: March 03, 2016, 07:16:28 pm »
Hi Cure,

I'm so sorry for your loss.  But I celebrate your victory regarding your undetected status.

Thank you, Else.  I celebrate your victory as well! Here's to your future success in your virus-free life.  :)


CureSeeker, yes, it is a bitter-sweet victory, but it is a victory.  I am sure your husband is smiling at your undetected status! Keep us posted, FT

Thank you, FutureThinker.  I agree with you.  I have no reason to believe he doesn't know, and is happy.

Thanks for your kindness, and I hope your journey to Wellsville is smooth and ever-lasting.
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Bitter-sweet victory!
« Reply #6 on: March 03, 2016, 07:34:41 pm »
Cure Seeker,
Your post brought tears to my eyes.  I am so happy for you, but understand this is truly a bittersweet victory given the loss of your husband to this terrible virus!  Be strong and take care of yourself - you owe it to both you and your husband.  Celebrate every day going forward without the dragon dwelling inside of you! 
Best to you!
Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Bitter-sweet victory!
« Reply #7 on: March 05, 2016, 04:21:02 pm »
Thank you Mary.  Congrats on your success as well.

When I saw the results, my first reaction was to tell him, and I felt both stupid and at a loss when I realized I couldn't.

I understand its sad to read, and I'm sorry for making anyone tear up; but, I need to explain my fear of relapse which otherwise wouldn't seem rational  - and maybe if someone knows someone who is dragging their feet a bit on getting treatment, maybe my husband's experience can get them motivated. 

Looking back at what he went through, he felt fine right up until he was a step away from the point of no return.  People need to move fast, and not use feeling alright as an excuse to procrastinate.

My husband was the type of man that only went to doctors for his eyes and teeth, as he aged and they began to give him trouble, or he was injured and needed stitches.  He was always fine and had nothing wrong with him - but, he DID have something wrong him.

We were together for 35 years, and he was seemingly healthy for the 35 years, and quite literally never saw a doctor for anything, because he never felt he needed to.

Hindsight is always 20/20 though, and I am now looking forward, I just don't know what I'm looking forward at, lol.

Time will tell.  And, thanks again! :)

Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Bitter-sweet victory!
« Reply #8 on: March 05, 2016, 04:57:49 pm »
"...Hindsight is always 20/20 though, and I am now looking forward, I just don't know what I'm looking forward at, lol..."

Thanks so much for sharing your story with us Cureseeker.  It is very moving.  I can so relate to your comment above.  There's so much life adjustment we all go through on this journey and yours is especially moving.

I had a prior boyfriend who died on the operating table getting a new liver.  By the time he got one, his body was too far gone to handle the operation.  This disease is very real... and for some the verdict is not good.  We are the lucky ones.  It compels us to live each day with as much gratitude as we can (not always easy, I know.)  I wish you all the best.   
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Bitter-sweet victory!
« Reply #9 on: March 05, 2016, 08:01:30 pm »
"...I had a prior boyfriend who died on the operating table getting a new liver.  By the time he got one, his body was too far gone to handle the operation.  This disease is very real... and for some the verdict is not good.  We are the lucky ones.  It compels us to live each day with as much gratitude as we can (not always easy, I know.)  I wish you all the best..." 

Oh Bree, thanks so much for sharing your story too.  What a disappointment that outcome must have been for you, but he must have been in good spirits, going into that procedure believing he would have come out of it with a new liver and second chance at a healthier life.  All I can say is how sorry I am, and the best of everything for your future too.  *hugs*

My husband and I had a full day to talk about a lot of things before he died.  He was still making plans for our future even though he knew he was dying.  It wasn't the way one imagines death to be at all.  He was walking and talking and rather euphoric up until about the last half hour of his life. 

As the last couple hours closed in he began talking about my needing to this and that, and I finally broke down and simply asked, "What am I going to do without you?"  He looked at me, smiled and said, "You have to live."

I totally agree, it compels us to live each day with as much gratitude as we can.  I am grateful he said that to me.  I've known war-vets that experience post-war anxiety over the fact they lived while their buddies were killed, like, "why them and not me?"   

I've caught myself asking that same question in regard to him.  It helps a lot to have his direct order in the back of mind.  I'm sure your boyfriend would have said the same. 

We have to live!  God bless!  *hugs again*  :)

Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline msu

  • Member
  • Posts: 12
Re: Bitter-sweet victory!
« Reply #10 on: March 05, 2016, 11:50:37 pm »
Congrats on your SVR and sorry for the loss you suffered during this journey.

A very well narrated post that i am sure would have made everyone sentimental.

God bless you and give you the power and health to lead your life.

Cheers
MSU
GT3A
Sovaldi+Riba for 24 Weeks
VL before treatment 2.9 million
Treatment started 8.8.15

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Bitter-sweet victory!
« Reply #11 on: March 06, 2016, 12:34:42 am »
Cureseeker,
 
Thank you for your kind words.  By the time he passed away, he was no longer by boyfriend, but still a good friend.  I have lost two siblings to cirrhosis from alcohol.  And, I have seen that final clarity, energy and euphoria in others that you spoke about.

My mother lost 4 of her 5 children (I was the one left.)  I say this not to be morbid but to say she modeled how to go on - to live life - to look for the good - to have a sense of humor and to appreciate the beauty of life.  I'm glad I got to see her strength - a 90 pound woman everyone called "Big Mamma" because she was a giant in her will to go on.

Anyway, I'm wishing lots of beauty and wonderful life experiences in your new journey.  I can tell you are a special and caring person.  And, UND is a beautiful thing to see in black and white!  You are here for a reason :) 
(Hugs right back atcha!)  Bree
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Bitter-sweet victory!
« Reply #12 on: March 06, 2016, 03:23:51 pm »
God bless you and give you the power and health to lead your life.

Cheers

Thank you, MSU. 

I am looking forward as if I know for sure that the dragon is dead!  I have another beast to overcome however, and one I have been trying to put to rest since I was in my early 20's  - the dreaded demon of cigarette smoking addiction.  *cringes*

Events of the past year have only made its grip tighter, as every day seems to have presented a new excuse to abuse it more rather than put it down once and for all.

Mark Twain (pen name for Samuel Clemens) is quoted as having quipped, "Quitting smoking is easy.  I've done it a hundred times."

Although the humor is not lost on me, the sad reality of the power of that addiction is not lost in that statement either.

I've been giving myself pep-talks recently, as I need to seriously defeat this addiction before I can claim any true success at leading a healthy life.  I guess I can be grateful that its my only vice.  I'm going to need that power you have wished me, and thanks for the kind words.

Best wishes on your successful journey with treatment as well!

Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Bitter-sweet victory!
« Reply #13 on: March 06, 2016, 03:26:14 pm »
Cureseeker,
 
Thank you for your kind words.  By the time he passed away, he was no longer by boyfriend, but still a good friend.  I have lost two siblings to cirrhosis from alcohol.  And, I have seen that final clarity, energy and euphoria in others that you spoke about.

My mother lost 4 of her 5 children (I was the one left.)  I say this not to be morbid but to say she modeled how to go on - to live life - to look for the good - to have a sense of humor and to appreciate the beauty of life.  I'm glad I got to see her strength - a 90 pound woman everyone called "Big Mamma" because she was a giant in her will to go on.

Anyway, I'm wishing lots of beauty and wonderful life experiences in your new journey.  I can tell you are a special and caring person.  And, UND is a beautiful thing to see in black and white!  You are here for a reason :) 
(Hugs right back atcha!)  Bree

You and your Mom have certainly seen more than your share, Bree.

UNDETECTED for the win!  :D
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

Offline CureSeeker

  • Member
  • Posts: 121
  • Virus Free! Happy Dance Time!
Re: Bitter-sweet victory!
« Reply #14 on: June 25, 2017, 10:09:07 am »
I had to take some time off from diagnostics and myself in general.  I was the primary caregiver for an elderly relative while working full-time; and, focusing on myself simply wasn't possible.  The stress of all 3 was more than I could bare.  I had my bloods done again, and here are the results -

6/21/17 - One and a half years post treatment

HCV RNA: UNDETECTED! :D

White Blood Count and Neutrophils:  high, but my  GI agrees it might be from gum disease.  Prior to treatment my gums and pockets were in good shape, but it seems the anemia experienced as a side effect of the Ribavirin causes oxygen-depleted blood, which caused/contributed to gum disease.  :(

CEA was slightly over the limit so I will finally have that long overdue first colonoscopy soon.  :P

Alpha-Fetoprotein, Tumor: very comfortably WITHIN range. :D

I am happy to report that I think I can finally start to let the paranoia go, and BELIEVE I am cured!  *smiles warmly* :)

Keep fighting the good fight!  Dragons CAN be slain!

« Last Edit: June 25, 2017, 10:15:23 am by CureSeeker »
Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.

~ Arthur Conan Doyle


Genotype 3a, F 0-1
Sovaldi & Ribavirin x 24 weeks

2/23/16 - UNDETECTED!  SVR12 achieved.  :D
6/21/17 - UNDETECTED!  1.5 years post treatment.
July 2018 - UNDETECTED!

 


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