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Hep C Discussion Forum -> Post Treatment -> Just got the dreaded phone call
Post Info TOPIC: Just got the dreaded phone call
LanaiSurferGirl


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RE: Just got the dreaded phone call
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sorry to hear this Kim, at least you bought yourself some time.  Good luck to you!



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geno 1a, mother & brother also hep c +...mom got a blood transfusion and passed it along.  Started tx with incivik 11/23/11 and brother started 2/8/2012.  Both of us und. at 4,8,12 and me at 24.  I am going 36 wks and brother is going 48 weeks.
JoAnneh


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All the effort and pain of med and its back!!!
So disappointing! No matter what the outcome.... At least we tried!
Really sad to hear your news but in the end your good spirit will
Carry on. Bless your heart, 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!
greenqueen


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So sorry to hear this, Kim cry What a nasty shock.

Make sure you take some time out to recover and be gentle with yourself

Love Steff xx

 



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


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oh god, didnt really want to read the post. but know its a real possibility for us. hugs from new zealand mate. my VL is at the lab, and i guess by next week im gonna know. scary stuff mate. take care.

i can not imagine how you feel. im an eternal optimist too,. hold on to that mate. hugs and more hugs.



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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
Mary Jane


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Sunny Beach Kim, ditto on what all have posted on here.. (( )) hugs ... to you.. hang in there carpe diem peace and love MJ



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Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
Judy S


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Oh jeez, I'm so sorry, Kim.   What a blow, as we know what this tx has done to our bodies; so difficult.  Well, as many have already mentioned, no matter what, our livers have gotten a big break with tx; we can see that in our liver enzyme levels and a couple of other labs.  I'm getting my 12-week-post labs done on Oct 30.  I've got it in my head to expect some viral load, as I had to stop in Week 23.  Future txs are looking a heck of a lot easier than what we just did.  For now, recover and enjoy being sx free.  Big hugs.



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Geno 1a; VL 4.7 million in Feb 2012. Started PegIntron & Ribavirin 3-9-12. Added Victrelis 4-6-12. UND since Week 8. Stopped tx Wk 23. UND 4 Wks post-tx. Relapsed 12-weeks-post.

52 y/o F, started Epclusa 11-10-19, F0/F1.  EOT 2-1-2020. UND. All liver function tests normal.
Cinnamon Girl


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Oh no, Kim, I`m so very sorry, what a shock.  cry  When I read that you were feeling so much better I thought things were looking very good...and they still are really, your liver has had a long holiday from the virus, and the future for new drug treatments is sounding really encouraging.

You should feel so proud of yourself for getting through such a long stretch of tx, hold your head up and enjoy your recovery!  I know this is a huge disappointed but it`s not the end of the story...your day will come.  smile

Take good care, and do stay around!  Hugs, Jill xxx



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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.

 

 
LC


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I know you must be feeling devastated right now, but with all the stuff they have in the works to fight this - it's only a matter of time.   http://www.hcvadvocate.org/hepatitis/hepC/HCVDrugs.html 

 



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Genotype 1a, VL 1,151,923.  51 years old.  Started treatment on AbbVie TOPAZ II clinical trial Oct 10, 2014!  Undetected at weeks 2 and 4! 
hrsetrdr


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Kim,   I am so sorry to hear of this,  I know that the disappointment is beyond what words can describe.    This coming Friday the 26th would have been the end of my triple tx, had I not been forced to quit.

I will be here for as long as it takes  to achieve SVR, so hang in there Kim and we'll all get through this eventually. 

 

grouphugn.gif



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"hrsetrdr"=Tim

Treatment halted on Aug.8,2012 due to vision problem.  6 month post tx labs

Aug.2013 SVR

Be strong when you are weak, brave when you are scared, and humble when you are victorious.
- Unknown

 

 
Shep


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Hey Kim--I am so sorry--but you are so strong. Hang in there--new tx is around the corner. Do rest and recovery!! Thinking of you!!

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Diagnosed 1996 genotype 1b VL alot tx starting 12/23/11 Victrelis UND week 8!!! 28 weeks of tx

Completed tx 7/6/12--still UND!!!!
mallani


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Hi Kim, very sad to hear your results. Goes to show what a lottery this is. As a young pup, you will be able to try something easier and more effective before long. Get back to normal, relax, then plan for another attack. You'll get there. Best wishes.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Karen


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Hi Kim-sorry to hear the news.  

You have a great outlook - ("Gotta pick myself up and move forward.")  



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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
gatekeep


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My thoughts are with you. Hang in there.

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25 yrs HepC. type 1a geno. 6mill viral load,3.5 out of a 4 liver biop.started Sept.19, 2012,Tx.Rib.,Incivek, Peg,4wk. Vl 61,undetected @12 wks,undetec.Wk 24
JIme


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****........sorry to hear this Kim. I know you don't want to hear it but at least your liver got a little vacation and now is stronger than before. I guess there might be some new oral meds in your future. In the meantime give yourself a chance to rest and recover. You deserve it. Please stay around. Lots of new people need to hear the whole story from us. not just the good stuff. God bless you.

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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

 

 

 

 

 
Iris Dragonfly


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Oh Kim, damn!!! that is disappointing news,  Ugh, you are such a trouper... I think I would be screaming or crying or both. I'm so sorry.  Hang in there girl. How you feeling overall though???

Sail on....I wish I could be on that boat with you. smile We'll be seeing you around ...yes?

Blessings, Iris



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in the silence of the woods, you will not be alone- Chief Seattle

60 years on planet, Female, diagnosed 1978 as non-a non-b, VL 8mill+, Fibro f-1f-2, Genotype 1a, treatment naïve....UNTIL 7-01-18  !!!! started Harvoni 12 weeks. :)

4 weeks=UND, 8 weeks=UND, 12 weeks=UND (EOT= 09-23-2018)
news


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Kim, I am speechless. Rare for me. We came through most of this together, and my heart is broken. I just did twelve week post labs a couple days ago, waiting for results. Please stay in touch and let us know if you start another protocol. With cool weather coming I am curious what sort of fun, outside activities you will be involved with. Check in and let me know.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Margo


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Oh gd, so sorry to hear that...don't give up, the better drugs are comming out in the nearest future.

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Geno 1b, relapsed in 2009 a week before my treatment was to be over. Started triple therapy on April 28th, 2012. UND at week 4,8,12,24,3 months post tx.
K2


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This is just so heartbreaking. I really do hope that will be a good candidate for the new meds in the future.

If you continue a healthy life style and really do all you can to be liver friendly hopefully you can keep on keeping on and living life to the fullest. Although yes there is that blasted knowledge of this %$#@!@# virus hanging there.

I really wish you the best of luck and strength to get through this latest emotional challenge.



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genotype 1a. started pegasus and riba on 25/03/2012 added victrelis after 4 weeks, treatment naive. CHC. 4 weeks UND & continue to be so far. Finish tx 6/10/12. Fingers crossed for SVR.
alohaKim


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It's back.  I just wrapped up 36 weeks of triple therapy....and 3 weeks later I have a VL of 217,000.  Really didn't think this was going to happen to me.  Everything went so well throughout tx, I responded fast and it looked like a textbook case that I was headed for SVR.  ugh. 



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Genotype 1a, non responder to Peg/Riba in 2005. Started triple therapy 1-27-12 with Victrelis.  UNDETECTABLE as of 8wk labs (after 4 weeks of Victrelis) 4-3-12. UND at week 8, 12, 16 & 20 of tx. Completed triple therapy Oct 2012. relapsed 10/2012
davesf


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Kim, I wish things could be different. Take a personal moment and drain yourself down emotionally. Embrace the sorrow, disappointment, and "why me" stuff. You'll need to do it at some point anyway to move on to the optimism and looking to the future and many other chances of success that are coming down the road. Our team has already told you the important details that you know as well. You've bought your liver an important interval to both heal for right now and to close the time window until one of the MANY drug prospects on the horizon finishes trials and proves to be the one that will cure YOU. This is a setback but that is all. Take some time to enjoy the activities and people you love. Stay healthy; you're SVR annoucement is simply delayed, not denied. Best, Dave

-- Edited by davesf on Thursday 25th of October 2012 04:17:10 AM

-- Edited by davesf on Thursday 25th of October 2012 04:18:33 AM

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All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
alohaKim


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Thanks to ALL if you!!! I really couldn't have made it through without this forum. You're all my peeps. I'm not going anywhere, I'll be around. I know many of us are wrapping up triple therapy, and we're among the first batch of folks around the world to finish this tx. Here's to hoping that I am in the minority. Best wishes to all of you. I'm not going to say it was worth the try, not yet...I feel pretty $h!tty (emotionally) at the moment. Maybe in a few days I'll feel differently. I'm an eternal optimist- so I do know that I'll be fine. Just need some time to process.
And Iris- yes, screaming & crying has occured. I truly cannot even put into words how disappointed I am right now. But what can I do??? Gotta pick myself up and move forward.
much love & aloha to you ALL!



-- Edited by alohaKim on Thursday 25th of October 2012 12:41:47 AM

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Genotype 1a, non responder to Peg/Riba in 2005. Started triple therapy 1-27-12 with Victrelis.  UNDETECTABLE as of 8wk labs (after 4 weeks of Victrelis) 4-3-12. UND at week 8, 12, 16 & 20 of tx. Completed triple therapy Oct 2012. relapsed 10/2012
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