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Hep C Discussion Forum -> Post Treatment -> Pre-screened for 12 weeks of PEG riba and 7977-turned down;(
Post Info TOPIC: Pre-screened for 12 weeks of PEG riba and 7977-turned down;(
Karen


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RE: Pre-screened for 12 weeks of PEG riba and 7977-turned down;(
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Alex, thanks for the kind words...



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
AlexNY


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Hey Karen,

There's no good without bad. Don't feel sorry about sharing wht u going thru, it makes us all feel a little better. U gotta find a better time to do it over



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I'm Alex. Diagnosed with hep c 12 years ago. Genotype 1a. Started tx on 1/31/12 Ironically, I'm an RN. VL 15.9 (!) mil.  Wk 5, 8, 12, 16, 20 - all UND :)
Karen


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Hi Jim,

Thanks for sharing your thoughts.  I especially like, "Life is strange and wonderful at the same time".  This is so true...

Those 13 months are long behind me (2005-2006).. I came through it with very few battle scars...and much "transformation". Today I am joyous and life could not be better. 

When I was asked to participate in the 7977 trial I had much reservation.  It was through this forum and your willingness to share your journey that provided me with encouragement I needed to change my thinking.  You have been a great inspiration. 

I plan to keep following the forum, especially your progress.  I wish you continued success.

P.S. Prayers are always welcomed and certainly needed...thanks again.



__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
JIme


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Wow, what a 13 months you have had. I agree with everyone. If your not having a tough time once in a while after all that, I'd be worried about you.

Maybe taking a deep breath and not to making any big decisions for a while would be healing for you. If possible.

Sometimes, everything happens for a reason. I don't get the answer sometimes for a long time but I have faith that I can get through anything if I just keep moving forward.  Sometimes a half a step at a time. Sharing it with other people is a huge part of it for me.

Life is strange and wonderful at the same time.

I'll keep you in my prayers tonight.



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
Karen


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Hi Jill,

I have given much thought to this decision, believe me.  Each of our lifes are so different. Treatment is a big step and should be based on the whole-not just the liver.  I have no living family or children..Living a longer life is not as important to me as the quality of the life I live...and the friends that are in it.

As mentioned, in regard to hep c, I will await the unknown, whether it has to do with declining health or other treatment options.  I can only make the call to reconsider treatment based on when/what is presented.  Who knows, I may still get a call stating the trial has an open slot and I am in:)...Things could change that quickly..

So, I am not giving up, giving in or going away...it is a great forum and I want to continue to be here to celebrate all the successes...Thanks again, K 



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Cinnamon Girl


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Well in that case I wish you all the best, Karen.  

In a few years time there will most likely be better meds available but you`re right, making the decision whether or not to do tx can be very difficult and no-one else can do it for us. 

Sounds like you know how to keep yourself fit and healthy, mentally and physically, so take good care of yourself.  You know where we are whenever you feel like stopping by!  smile

~ Jill xx



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Cinnamon Girl


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Karen. please feel free to have a good moan and vent - you have good reason to!  

Really sorry to hear all you`ve been through, any one of those events would have been enough to make you at least "mildly" depressed, never mind having them all happening over such a short space of time!

I agree with Steff, I`m sure they must be very picky about who they allow into a trial, but don`t give up the fight.

Best of luck!  thumbsup.gif

~ Jill xx





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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
greenqueen


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Hi Karen,

So sorry to hear about this and after reading what you've been through in such a short space of time, it's enough to bring on severe depression, let alone mild depression!

Glad to hear you've not given up on this - it's just that you sure don't need this added stress. I do know that depression is not a reason to withhold tx these days, as they monitor the patient closely, but as it's a trial I reckon they "cherry pick" so that there is less likelihood of too many people dropping out.

Good luck with getting this sorted and keep us updated aww

Love Steff xx



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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
Karen


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Steff/Jill,

Thanks for listening...and the comforting words.  

What happened yesterday supports my prior decision since being diagnosed with hep c, "not to treat" .  I am in good health, 25yrs of yoga-mediation-vegetarian diet-physically active.  I only considered this trial because the doctor that was following my hep C (amazing person-out of the box thinker) left patient care to take his dream job working at the biotech company that helped develop this drug.  Knowing him, where I am mentally (funny to state that), physically, work situation (not working-will be changing soon), age, friend support and following this forum of wonderful people willing to share their experiences, I had reconsidered my position.  I have shed my disappointment and will now await the unknown.

I applaud everyone who has had the courage to go through treatment; just making the decision is difficult in itself.  The outpouring of love and support on this forum is so touching; I want to thank you once again.

 



-- Edited by Karen on Friday 13th of July 2012 03:22:15 PM



-- Edited by Karen on Friday 13th of July 2012 04:44:42 PM



-- Edited by Karen on Friday 13th of July 2012 05:14:42 PM

__________________

Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
Karen


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JoAnne...thanks for the reply.

I needed to vent..but I am not giving in..  I just sent an email to the doctor running the study..we will see what comes next..



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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
JoAnneh


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Wow sorry to
Hear that! Guess we all shOuld lie and say we
We're never depressed enduring treatment side effects!
So sorry for ur losses, JoAnne

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Karen


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Very disappointing...Because my PAST medical chart showed mild depression when taking anti-virals I was not accepted into the study.  

Here is what was going on..wouldn't anyone be "mildly" depressed (all occurring within 13 MONTHS)                                                                                      

my father fell down the stairs (died

my mother past from dementia (grand mal seizure

Laid off from my job-Started a whole new career

Diagnosed with Hep C

Legal issues w/my brother

Got married-now divorced ( a new marriage could not handle all of the stress

I am sure each of these life occurances are considered to be all the "biggies" when it comes to "stress" I just got them all at once...

Sorry for sharing all my crap...just having a "MILDLY" depressing MOMENT!!!



-- Edited by Karen on Thursday 12th of July 2012 06:54:42 PM

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Geno Type A1- VL 16.2m - F1-F2 Moderate Fibrosis - Started treatment 4/16/13 Sofosbuvir/Ledipasvir 6 months -  UND week 4 (5/14/13) - EOT 10/1/13 - 12wk blood draw 12/20/13 UND - 24wk/final blood draw March 2014
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