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Hep C Discussion Forum -> Post Treatment -> 12 week post results -- UND!!!
Post Info TOPIC: 12 week post results -- UND!!!
britlitkaren


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RE: 12 week post results -- UND!!!
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Congratulations!!! I'm 9 mos SVR and also having trouble getting back in shape. I tire easily. My dr has me working on a higher protein diet now. The reality of cirrhosis is no fun. But I'm still on an SVR high. Yes. I agree... It was worth it. Still need support for cirrhosis. Anyone else?

__________________
Diag 8-10. 1st VL 600,000. Gen 1a. Grade 4 Stage 4 cirrhosis w/ Esophogeal varices level 2. Viral load 1,750,000 7/12/10. Triple Therapy w/ Telaprevir began 7-15-11
mallani


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Hi Mark,

Fantastic result and it's great to hear the Sx are improving. Enjoy a happy HCV-free life. It's nice and warm here!



__________________

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
JoAnneh


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Mark, sounds like u r on the road to getting healthy!
Glad u have a hobby too!
Hope your eye is well now.
Thanks for update. 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!
innerview


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Thank you all for the replies and kind words.

I think you guys are right... I need to get some more muscle strengthening exercises. I'm walking quite a bit and throwing the tennis ball for the puppy (for what seems like hours on end) but not much else. A gym membership may be in order. Ugh! :)

My eye is slowly improving! The spasms in the eyelid subsided this week. That's happened before, no spasms for a few days but then they returned. I hope they are gone for good this time. It is such a weird and annoying feeling to have the eyelid twitching all the time.

I am just starting a little creative activity and discovering the world of All Natural Organic Beeswax Candle making. Keeps me out of trouble and great gifts for the holidays. I'll post some pics once I get it going.

Happy Thanksgiving to all my American buddies out there.



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Peace, Mark

1A, stage 2/3, TT, began TX with Incivo 1/31/12, Week 4 VL<15, week 7 UND, week 12 UND, week 18 UND!!! End of Tx July 31 VL UND!!!  I had to do 26 weeks total and was on half Riba and half Interferon for most of Tx. 12 week post Tx VL UND!
Judy S


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The tx robbed me of a lot of muscle tone.  I noticed a different type of soreness after I started working out again.  Pretty weird.  Whole thing was surreal.



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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.
Shaun


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innerview wrote:

That's the good news.

On the other end ... I am still having problems with my left eye, my muscle strength is not returning as quickly as I had hoped, I'm having some major pain concerns in my right leg, and overall I am feeling pretty low (I think some mild depression, although if I'm talking about it perhaps it's not as mild as I would like to think).

I am still hopeful that in the next three months things improve, but right now I wonder... was it worth it?

 The treatment is very harsh on your muscles.  You need to exercise to bring them back.  It is hard but it makes you feel alot better faster.



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LanaiSurferGirl


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kep your chin up!  I saw a report that it can take up to 6 months to normalize...just think...they tell women not to get pregnant for at least 6 mo afterwards so there is still medication in our system for a while.



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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.
Bills


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hrsetrdr wrote:
innerview wrote:

That's the good news.

On the other end ... I am still having problems with my left eye, my muscle strength is not returning as quickly as I had hoped, I'm having some major pain concerns in my right leg, and overall I am feeling pretty low (I think some mild depression, although if I'm talking about it perhaps it's not as mild as I would like to think).

I am still hopeful that in the next three months things improve, but right now I wonder... was it worth it?

 The UND is worth it in the long run; hopefully the ailments you mentioned will be much better soon.     I am 12 weeks post tx as well, still have vision issues with my right eye, which is (i think) slowly getting better but at this rate I expect it to take another 6 months to get as good as it's going to.    I seem to have a heightened anxiety level post tx, trying to stay busy and positive as much as possible.

 

Edit:

Bill,   I imagine you'll be printing out and framing that email!  The ice cream will be a little sweeter today.    



-- Edited by hrsetrdr on Sunday 4th of November 2012 04:34:41 AM

 Maybe it's a blessing in disguise Tim  Wouldn't want to hear your eye was worse or permanent damage  We have no real guarantee about the Sx  and what happens years down the road  Maybe better to sit out for now Was it worth it ??  This my 3rd time I wouldn't be here if I wasn't hopeful that we can be cured. I have an old knee injury that has gotten worse and seems to get worse r I hear a lot people say they don't bounce back as fast as they want to maybe that's the way it is   I've had trouble with fatigue and climbing stairs for about 5 years now They say its a symptom of the Hep C  I'm real worried about that     and I think we all have more depression than we admit maybe that's how we do fight it  I'm hearing and been experiencing a lot of depression myself  it's up and down I try to blame the drugs and not let it get into my head and dwell on it to much and hoping when i loose the HCV I'll  feel better 

But easier said than done

Your an inspiration here you give good advice and think of how much we all learned form each other

We'll be seeing you SVR someday soon

Bill S



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

hrsetrdr


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innerview wrote:

That's the good news.

On the other end ... I am still having problems with my left eye, my muscle strength is not returning as quickly as I had hoped, I'm having some major pain concerns in my right leg, and overall I am feeling pretty low (I think some mild depression, although if I'm talking about it perhaps it's not as mild as I would like to think).

I am still hopeful that in the next three months things improve, but right now I wonder... was it worth it?

 The UND is worth it in the long run; hopefully the ailments you mentioned will be much better soon.     I am 12 weeks post tx as well, still have vision issues with my right eye, which is (i think) slowly getting better but at this rate I expect it to take another 6 months to get as good as it's going to.    I seem to have a heightened anxiety level post tx, trying to stay busy and positive as much as possible.

 

Edit:

Bill,   I imagine you'll be printing out and framing that email!  The ice cream will be a little sweeter today.    



-- Edited by hrsetrdr on Sunday 4th of November 2012 04:34:41 AM

__________________

"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

 

 
Bills


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I think I'm goina have Ice cream again

I needed good news decided to check E-mail    This mail below is from my nurse ( RN ) where I'm getting tratment  she is reffeing  week 12 VL  labs   ( this in treatment labs not post Tx )   It is a week late cause of the hurricane

Hi Bill,

Youre still undetected.  Im glad you could get an appointment with Dr. xxxxx next week.

Hope you are well. Call if you need anything or have any questions. 

I couldn't ask for more from the group that treats me I love this girl she's been cheering me on for about 2 years so sweet and really knows her stuff  My NP also e-mails and calls my cell they e-mail me prescriptions and blood testing requisitions   I feel very blessed  They really take good care of me and everyone they see  I'll sleep good tonight

Bill S

 



-- Edited by Bills on Sunday 4th of November 2012 04:00:19 AM

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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

JoAnneh


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Mark, I just left NC three weeks ago!
It was beautiful there! Also, the blue ridge mountains
Are heavenly. My oldest son lives there.
He is a race car engineer with Penske Racing Team for Indy Racing!
He loves NC!
Check on AD's.... May only need them few months to get everything balance.
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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Hi Mark, great to hear about your UND! smile

Bear in mind that it can take a while to recover from tx, both mentally and physically, so have a chat with your doc about how you've been feeling.

That hike in the Blue Ridge Mountains sounds like a good move - exercise is a great boost for both body and mind and it's good that you have Charly to get you out and about aww

As for the AD's, I was wondering if you are ultra sensitive to certain meds, like myself - I can't tolerate AD's and have found that many meds have the opposite effect on me than they're supposed to. I have also noticed that lingering depression is one of the more common sx that people have problems with post tx and there doesn't seem to be enough support available. It's often a case of "goodbye and get on with it", something that really does need addressing!

Stick around and keep us posted on how things pan out.

Love Steff xx



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


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Congratulations to you, Mark, great news!  biggrin

Sorry you`re having these health problems though and you`re feeling so low, post tx recovery is different for everyone and it can take several months to get over the effects of tx .  Depression can really hang on too, and it might be worth talking to you doctor about AD`s if it continues.  I sympathise with you about the cold wet weather over there in Sweden, it`s bad enough here in the UK!   Not my kind of weather either!

Take care, and keep in touch, we`re always here.  And it was worth it, I`m sure! smile  Hugs, Jill xx

ps - Thanks for posting your photos, what a handsome looking dog Charly is, I bet you have some great times together, and lots more to come! 

 

 



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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.

 

 
Judy S


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Wonderful news about the UND, Mark, congratulations!!  I'm awaiting my 12-wk-post results now.  Yeah, there is no springing back from this tx right away, to be sure.  I've got a lot of muscle and joint issues, and am taking Xanax daily due to the anxiety that tx has left me with.  The brain fog is still there, too.  Just had a cervical epidural last Tuesday; that was fun.  I hope we all eventually recover from these lingering sx and if we can extend our lives and have healthier livers I would say it's been worth it.  Hugs to you 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.
innerview


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Hi Alan, JoAnne, Wnose, Ken, Malcolm, Donna, Kristy, and Bloomster,

Thank you all for your posts and encouragement. I should add that it is getting cold, dark, wet and gray here in Sweden. Not my kind of weather and definitely adds to my LOW feeling. I need some SUN!!!

JoAnne, I'm still avoiding antidepressants but I will talk to the dr about options. I really feel a trip back to NC would help a lot. Get back to my roots and hike in the Blue Ridge Mountains!

Donna, my eye (doc also said dry eye) is improving, but I am going to up my fish oil intake and hope it improves quicker.

Alan, my son and Charly (man's-best-friend) are doing great. Charly is a great companion and wants to be with me wherever I go. He loves playing ball and getting out for walks in the forest. He keeps me moving whether I want to go or not.

All the best to you all!

Mark



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Peace, Mark

1A, stage 2/3, TT, began TX with Incivo 1/31/12, Week 4 VL<15, week 7 UND, week 12 UND, week 18 UND!!! End of Tx July 31 VL UND!!!  I had to do 26 weeks total and was on half Riba and half Interferon for most of Tx. 12 week post Tx VL UND!
Bloomster


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So pleased for you on the good result!



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My husband had genotype 1a, 46yo, started triple therapy (peg/rib/vic) 23rd July 2012, VL prior to treatment 14 million, UNDET 12, 24 weeks, EOT 24th June 2013, EOT +1.5 weeks UNDET, EOT +12 weeks & EOT +27 weeks UNDET; SVR January 2014
K2


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Hey mark, good news on the und. You are seeming aware that your chemical balance is out of wack, as others have said, talk to doc and go worth any advise you get. I had reservations about ad's years ago, my doc said no big deal, no different to taking contraception daily. Out just keeps usa on track. Study on touch. Kristy x

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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.
Shep


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HI Mark! .
It is good news being UND at 12 weeks post--and recovery is slower for some than others. Still having some issues myself--but overall feeling better. I am having some eye problems also--had that nasty infection which has cleared--now the doctor says it is dry eye which is very common. The eye doctor said there are many different ways it manifests itself and there are also many different medicines and treatments. One of the simpler ones was taking fish oil every day--it may or may not be affective and it does take about 6-8 weeks. I am giving it a try! I have also had some depression or actualy trouble shaking the depression that took hold the last couple of months of tx.

The whether it's worth it part--for me I believe it has been. I feel the strength both physical and emotional coming back. It is still a ride--but with gentler ups & downs & curves. Stay strong Mark!
Donna

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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 Mark, congrats on the 12 week post Rx undet! You're on the way to being HCV free. I'm sorry you have residual problems- that is my greatest fear. I was told to' focus on the prize'. For me that is now to make it to the end of Rx without any more Sx, and to return to my preRx self as soon as possible.



__________________

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
packerfan24


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Good for you und. I just hadmy 12 week test also. I am und. Red and white blood cells are a little low. Keepingan eye on it.

kEN



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Packerfan24
wnose


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Congratulations! My nurse told me that if you're UND @ 12 weeks, then it's very likely you're SVR too. 

My recovery wasn't quite as even as I liked but now...6+ months post treatment...I can with no reservation: yes it's totally worth it. Everything has bounced back for me (in some cases, exceeding expectations) and life is awesome.



__________________

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!!! 
JoAnneh


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Hey Mark!!!!! So glad to hear from you no matter what!
You were here for me when I started and u guys were my role models!
I didn't know your eye was causing u problems!
I hope that gets better soon! Are you just getting old:)
I hope coming back to the forum will help you feel better. I have
Missed you and so has Alan too. Did I miss reading
That the virus is still clear for you???
I go next Friday to check my load. Did u do 24 or 48 weeks?
Welcome back, sounds like time for you to go on an exotic mission trip!
And are u still refusing antidepressants?
your friend, 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!
news


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Yikes, mark. I hate to hear you talk like that. I feel like I know you after all we have been through, and I know you wouldn't say it if you didn't mean it. All that residual pain and trouble is unusual. I hope you are still able to get an audience with your doctor, and make all these things known to him. You had a difficult treatment, as I recall, with some long term dosage reductions. Could be you are just more sensitive to these poisons. If there is a bright side, I have observed that the ones of us with the most trouble and worst side effects seem to get the best results. As if our own sensitivity to the drugs reflects our virus' sensitivity. Just an observation.

See if you can get some time with the doctor. We all know this is a case where the cure is ten times worse than the illness, but the long term gains should still be obvious. It is time for you to feel better.

How is that fine looking boy and dog team doing these days?

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!!
innerview


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That's the good news.

On the other end ... I am still having problems with my left eye, my muscle strength is not returning as quickly as I had hoped, I'm having some major pain concerns in my right leg, and overall I am feeling pretty low (I think some mild depression, although if I'm talking about it perhaps it's not as mild as I would like to think).

I am still hopeful that in the next three months things improve, but right now I wonder... was it worth it?



__________________

Peace, Mark

1A, stage 2/3, TT, began TX with Incivo 1/31/12, Week 4 VL<15, week 7 UND, week 12 UND, week 18 UND!!! End of Tx July 31 VL UND!!!  I had to do 26 weeks total and was on half Riba and half Interferon for most of Tx. 12 week post Tx VL UND!
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