Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Hep C Discussion Forum -> Post Treatment -> Virus is back for me, too
Post Info TOPIC: Virus is back for me, too
LanaiSurferGirl


Senior Member

Status: Offline
Posts: 232
Date:
RE: Virus is back for me, too
Permalink  
 

aw, Judy!!  Well the virus took a beating for a while so it bought you some time!



__________________

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.
wnose


Senior Member

Status: Offline
Posts: 123
Date:
Permalink  
 

We can't control what life hands to us; but we can control how we react to it.

You're really an example to us Judy, well done!



__________________

Diagnosed Geno 1a, 1992. Relapsed after riba-peg trmt in Aug 08. Oct 22 2011: Incivek 3rx @ 18 million VL.

Day 10: <15. --------------------->>>>>>12 OCT 2012: SVR!!! 
angelwish


Member

Status: Offline
Posts: 17
Date:
Permalink  
 

Everytime  i see your post I am so inspired by your spirit. You will beat this !!



__________________
Judy S


Senior Member

Status: Offline
Posts: 360
Date:
Permalink  
 

Thank you, Jeremy.  Don't be sad, though; hope is always alive.  It's tougher for us 48-weekers as we're cirrhotic and there's still so much to learn about this virus.  I was Really thankful to Malcolm for some info that explains exactly how and why we relapse.  Before that, I didn't even know what RAVs were.  This is where Macolm wrote much about it:

http://hepcfriends.activeboard.com/t51431221/anaemia-is-good/



__________________

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.
jrc


Senior Member

Status: Offline
Posts: 207
Date:
Permalink  
 

Judy S wrote:

Awesome info, Malcolm; thank you So much!  I could never get info like this out of my dr, lol!  I will check out your sub-post, as well; this Is interesting, indeed.  So much to understand with this virus, eh?

Yeah, the V.L. always fluctuates, and so do the liver enzymes, to a lesser extent of course.  I was just shocked at 113 for ALT...wow!  Gave me a mini heart attack.  Glad to hear it should calm back down again.  Hehehe, I've gotta just laugh as now I have a new thing to worry about....RAVs.  As has been said, this is a Long, Strange Trip and it keeps on going.  But I also keep on going.   smile   



-- Edited by Judy S on Wednesday 7th of November 2012 03:45:07 AM

 This news literally brought me to tears Judy, Im so sorry this happend.I dont know what to say no............Hang in there lmk if u need anything or to talk!



__________________

Geno 1 A Started Tx w/ Victrelis  8-3-11, Viral Load  21.2 Million,  Und Weeks 4 Through 28 ,End Of Tx 2-15-2012 !SVR
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Judy, I did a sub-post in 'Anaemia is good' discussing RAV's (Resistance-Associated Variants or drug-ristant mutations). If you can struggle through that, you'll see that your rebound (relapse) would be caused by RAV's. Researchers have examined blood from relapsers- in the first months, RAV's are the dominant form of the virus. There are 2 specific RAV's in Geno 1a, and 3 different RAV's in Geno 1b- all patients seem to have these same RAV's. It is interesting that the RAV's do not persist. They revert to the 'in-the-wild' form which is obviously the most effective form of the virus. In Geno 1b ( which has a more stable structure and less liable to mutation), the RAV's have mostly disappeared in 6 months. In Geno 1a it may take 1-2 years for the RAV's to lose their dominance.

There is no consensus on what your VL will be. It will fluctuate as always, but probably will be lower than before Rx.

The rise in ALT is to be expected. It just means the virus is damaging the liver again with release of enzymes from hepatocytes. This should settle down to pre Rx levels.

When you start your next Rx, RAV's will still be a factor- however a combination of drugs will be given so that any RAV's are mopped up.



__________________

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
Judy S


Senior Member

Status: Offline
Posts: 360
Date:
Permalink  
 

Hehehe, so true, Dave!  This virus is a persistent one for sure.  Like Vernon says, I'll be back to kicking "Vy-rass" (love that one Vernon!!) in a few years when they have interferon-free tx.

One thing I'm wondering is, did it mutate?  How can we tell if it did, for those who relapsed?  Does anyone know?

I was kind of surprised at my ALT result from yesterday's Lab.  It is 113 now.  It was in the teens and 20s during tx.  Before tx it was always in 40s and 50s.  My pre-tx viral load was 4.7 million and now it's 1.4 million.  I'm just wondering why my ALT shot up so darned high and if it will come back down.

Somebody else mentioned, after relapse, that her dr told her the V.L. will drop back down after a while.  I believe it was sungoddess but not 100% certain.  Does anyone have knowlege of this?



__________________

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.
davesf


Senior Member

Status: Offline
Posts: 322
Date:
Permalink  
 

Aww, crap. If treatment success was correlated to side effects you'd have wiped out the HCV in you and the next four closest people too. I'm glad your maintaining the positive attitude. My heart goes out to you today.

__________________

All Done Poisoning the Dragon that Used to Poison Me

Genotype 1b  Incivek Combo
Shep


Guru

Status: Offline
Posts: 592
Date:
Permalink  
 

Oh my dearest Judy--your news brought tears--but your spirit brought smiles! You are an amazing person! Patience will win and there will be a new treatment. Hang tough! Hugs to you and your sweet daughter!
Shep

__________________

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!!!!
Mary Jane


Guru

Status: Offline
Posts: 523
Date:
Permalink  
 

Judy S wrote:

Thanks guys; you're always my supportive forum family.  smile

I'm 45 this month and am very fortunate to have been given the gift of resilience all my life.  I felt the blow for 5 mins but then told my daughter we have to celebrate, so we went to Olive Garden for dinner as they're having an awesome special right now. She was thrilled to go out on a Monday night.

We celebrated because as we've all said...what doesn't kill you makes you stronger.  And I Am stronger.  I'm getting cervical epidurals (series of 3) and it's truly helping some of the joint and muscle pain that the interferon has left me with.  I feel Better.  My endurance is increasing.

The fear of future tx is gone, as it's no longer "unknown".  I know what I went through with PegIntron, Riba, & Vic.  I know that they're aiming for interferon-free txs and I believe I can do that.  I'm grateful that my liver got a chance to regenerate some, and that my AST & ALT dropped into the teens.  This has been another major life experience and no matter if bad or good, they're all life lessons that help us to grow.  Just look at how much more educated we all are now, analyzing all labs and philosophizing about effects and possibilities, hehehe!  I think we're all winners.  smile

 (( hugs )) to you my friend..  life's a journey not a destination... You are " the glass half full gal"  thanks for always sharing...I am bummed for you and scared ****less for myself,  but this to will pass... I will be pushing , and signing all petitions for the newer treatments to hit the market soon.. enjoy your no more dragon posion days and enjoy your life... I wish you the best peace and love & joy MJ



__________________

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
news


Guru

Status: Offline
Posts: 850
Date:
Permalink  
 

Judy, of the several stories of relapse lately, yours hurts me the worst. What a soldier you were. But as you say, now you have seen it, and the fear is lifted. Now your liver has rested, and you are stronger. Now you and your wonderful, strong daughter can go out for Italian on a Monday night. Now you can wait for something that works just as we'll but doesn't put you in the ER twice. I am sad for the news, but I am happy for all you have done and can do. Please check in with us from time to time. Alan

__________________

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!!
Karen


Senior Member

Status: Offline
Posts: 396
Date:
Permalink  
 

Difficult to hear-after all you went through;(  

Your outlook is great-that is sweet music.



__________________

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
Judy S


Senior Member

Status: Offline
Posts: 360
Date:
Permalink  
 

Awesome info, Malcolm; thank you So much!  I could never get info like this out of my dr, lol!  I will check out your sub-post, as well; this Is interesting, indeed.  So much to understand with this virus, eh?

Yeah, the V.L. always fluctuates, and so do the liver enzymes, to a lesser extent of course.  I was just shocked at 113 for ALT...wow!  Gave me a mini heart attack.  Glad to hear it should calm back down again.  Hehehe, I've gotta just laugh as now I have a new thing to worry about....RAVs.  As has been said, this is a Long, Strange Trip and it keeps on going.  But I also keep on going.   smile   



-- Edited by Judy S on Wednesday 7th of November 2012 03:45:07 AM

__________________

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.
kiwi


Senior Member

Status: Offline
Posts: 498
Date:
Permalink  
 

yeh for me the only thing that hasnt come right so far is my liver enzymes. they are still pretty high. nurse lady said its bit strange. ah well. this whole trip has been pretty strange, no need for it to be 'normal' now eh.

take it easy judy

 

actually, i lie. my wbc etc are still bloody low. and my liver enzymes are up. go figure. i hope its gonna come normal sometime.



-- Edited by kiwi on Wednesday 7th of November 2012 02:28:12 AM

__________________

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


Senior Member

Status: Offline
Posts: 303
Date:
Permalink  
 

So sorry to hear this, Judy. I know you had a rough ride from the beginning. You are tough. Hang in there.



__________________

Geno 1A, VL 1.9 mm, SOT 12/2/11 - Pegintron/Ribavirin/Victrelis, UND since wk 8, EOT 6/15/12 (28 wks), SVR 11/30/12
Judy S


Senior Member

Status: Offline
Posts: 360
Date:
Permalink  
 

Thanks guys; you're always my supportive forum family.  smile

I'm 45 this month and am very fortunate to have been given the gift of resilience all my life.  I felt the blow for 5 mins but then told my daughter we have to celebrate, so we went to Olive Garden for dinner as they're having an awesome special right now. She was thrilled to go out on a Monday night.

We celebrated because as we've all said...what doesn't kill you makes you stronger.  And I Am stronger.  I'm getting cervical epidurals (series of 3) and it's truly helping some of the joint and muscle pain that the interferon has left me with.  I feel Better.  My endurance is increasing.

The fear of future tx is gone, as it's no longer "unknown".  I know what I went through with PegIntron, Riba, & Vic.  I know that they're aiming for interferon-free txs and I believe I can do that.  I'm grateful that my liver got a chance to regenerate some, and that my AST & ALT dropped into the teens.  This has been another major life experience and no matter if bad or good, they're all life lessons that help us to grow.  Just look at how much more educated we all are now, analyzing all labs and philosophizing about effects and possibilities, hehehe!  I think we're all winners.  smile



__________________

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.
kiwi


Senior Member

Status: Offline
Posts: 498
Date:
Permalink  
 

ah poo judy. what a bummer mate. hugs xx



__________________

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


Senior Member

Status: Offline
Posts: 142
Date:
Permalink  
 

Sorry to hear of this.  You did what you could and better treatment with side effects are coming!!!  Keep your head up...better days are coming!!!!smile



__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

12Step Guy


Senior Member

Status: Offline
Posts: 413
Date:
Permalink  
 

 

It's likely been pretty devastating to get the news. I expect we all think about it daily, at least I do. It sure would be great if life would give us what we want. But as we all know it doesnt work that way. With or without SVR, each day we are walking upright is a gift (as a matter of fact its evolutionary)

I went into this thinking my prognosis wasnt very good which should have given me cause to back away. But I suspect you like me have been around long enough to know that the more we get knocked down, the stronger we come back. Heres to your getting back in the ring someday and kicking Vy-rass.



__________________

Genotype 1a, IL 28 = CT  Interferon and riba 48 wks in 99, Daily Peg and Riba 18 months in 2007, Started Incivek, Peg, Riba 6/21/12. 4th stage cirrhosis. Last Dart will be May 23 2013.
2willy


Senior Member

Status: Offline
Posts: 256
Date:
Permalink  
 

Sorry for the news, as others have said with your positive attitude take no prisnoer deminer you will beat this.  Just hearing how you cope with this gives me strength to face the same probable news down the road.  You are young and an inspiration to all, Thankyou for your courage and posts, Bill and family



__________________

Geno type 1  rib and peg September 2012 , 5 weeks tripple and viral down to < 15 und april Aug 25 finished stay at peg 3 rib and eprex + blood transfussion finished treatment Aug 25 2013
JoAnneh


Guru

Status: Offline
Posts: 1077
Date:
Permalink  
 

Judy, You are young and better tx coming!
Thank you for posting! Love, JoAnne

__________________

JoAnne

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

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


Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Oh Judy, I can`t tell you how sorry I was to see this newsfrustrated.gifYou`ve been a real trooper and have always managed to stay cheerful and carry on being supportive to others here, despite having such a rough time yourself on tx.  You know you gave it your very best shot, stay strong and positive... your time will come.

Wishing you all the very best, and don`t forget we`re all here for you.  Big hug from Jill xxx



__________________

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


Guru

Status: Offline
Posts: 2282
Date:
Permalink  
 

Really sorry to hear this, Judy - you did all that you possibly could. You have a great attitude and can take some comfort in knowing that things are rapidly moving forward in the development of much less toxic treatments aww

Much Love Steff xx



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


Senior Member

Status: Offline
Posts: 251
Date:
Permalink  
 

Awww Judy! (huggs!!!!) I am so sorry to hear this! (you've been on my mind lately) I agree with Guru;
Your liver got a break, and newer less toxic treatments are coming out...Big Hugs for you!!!!!!!

__________________

Genotype 1A, Genotype (from parents) CC, Viral Load=7,514,000 (as of 12/6/11) Started Triple Therapy TX: 12/17/2011.UND @ 4-48 Wks Taken Off Incivek @ 6 wks due to Rash Response. Finished TX 11/17/12. SVR year 1
mallani


Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Judy, my heart goes out to you. You deserved a better result with all the Sx you had to go through. You're a youngster, your liver's had a break, so relax until something less toxic comes along. You'll make it next time. Hugs XX



__________________

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
K2


Senior Member

Status: Offline
Posts: 196
Date:
Permalink  
 

Oh Dear Judy, I am so dissapointed to hear this news But I must say your attitude is, as always- commendable. you sure did do everything you could and, post tx if we continue to do this, this thing won't stop us or slow us down. Power and strength to you my friend. Love and massive hugs. xxx

__________________

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.
hrsetrdr


Guru

Status: Offline
Posts: 940
Date:
Permalink  
 

Judy,

I am so sorry to hear this. As you know, I am in the same boat, having halted tx at 16 weeks so I'm anticipating doing treatment with one of the upcoming "pill only" regimens; no interferon for me-thankfully.

grouphugn.gif



__________________

"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

 

 
Judy S


Senior Member

Status: Offline
Posts: 360
Date:
Permalink  
 

Got my results from 12-week-post today and it's no longer Und.  I now have a viral load of 1.4 million.  I know a few of us have had the same news, lately.  (Also, I was only able to complete 23 weeks of tx, and was supposed to go 48 but body shut down.)  Sure I'm disappointed as that tx was the most difficult thing ever, but I won't let it get me down.  I know all of our livers get a huge break while on tx; you can see it in our AST and ALT levels, amongst other things.  I'll just continue to be good to my liver and wait 2 - 4 years, however long it takes for the interferon-free txs that are currently in trials.  I'm OK, knowing I did everything I could.  It just wasn't meant to be, this time around.  The good thing is that I'm seeing a lot more SVRs than relapses on here, so don't let it get you down if you're awaiting results right now.  Hugs to all.  



__________________

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.
JIme


Guru

Status: Offline
Posts: 733
Date:
Permalink  
 

Crap........is all I can say.

You went above and beyond what most people would have done. You should be proud of your effort. I know I am.

"For us, there is only the trying. The rest is not our business."  T.S. Elliot



-- Edited by JIme on Tuesday 6th of November 2012 10:38:50 AM

__________________

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

 

 

 

 

 
Page 1 of 1  sorted by
 
Quick Reply

Please log in to post quick replies.
Hep C Discussion Forum -> Post Treatment -> Virus is back for me, too
Legal Disclaimer:

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.