User

Welcome, Guest. Please login or register.
December 02, 2024, 05:50:21 pm

Login with username, password and session length


Search

Forums Index

Stats

Members
Stats
  • Total Posts: 55133
  • Total Topics: 4851
  • Online Today: 256
  • Online Ever: 3061
  • (September 25, 2024, 11:40:40 pm)
Users Online
Users: 0
Guests: 238
Total: 238

Welcome

Welcome to the Hep Forums, a round-the-clock discussion area for people who have Fatty Liver Disease, Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.
  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.
  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.
  • Product advertisement (including links); banners; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from the Hep Forum Moderators.
Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.
« previous next »
Pages: 1 2 [3]   Go Down

Author Topic: Making the Most of Post Treatment  (Read 127418 times)

0 Members and 6 Guests are viewing this topic.

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Making the Most of Post Treatment
« Reply #200 on: February 18, 2016, 12:00:59 pm »
I'm excited for you!  ;D  Prepare to feel awesome.  (A very well-hydrated awesome: water, water, water!)
Logged
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: Making the Most of Post Treatment
« Reply #201 on: February 18, 2016, 12:11:57 pm »
Awesome it is, starting in the next 48 hours!!!  A bright future is ahead ------ so grateful! FT
Logged
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 Rosie13

  • Member
  • Posts: 297
Re: Making the Most of Post Treatment
« Reply #202 on: February 18, 2016, 01:26:53 pm »
Bree, I smile  when I read your posts. Just learned you are a rescuer!! YEAH!!! That's what drives me in the morning & I know even if I am a needle in the haystack of wayward animals...some find their way to me & get forever homes . My husband is supportive but worried that I was planning to keep feeding while on TX  (Driving while under influence of Harvoni!!!)but it was a blessing to feed & know it got me out & thinking of them. This spring post treatment I hope I am stronger & do more for my furry friends. Another beautiful day in paradise. 
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Rosie13

  • Member
  • Posts: 297
Re: Making the Most of Post Treatment
« Reply #203 on: February 18, 2016, 01:30:05 pm »
Future thinker, love your name & your mindset is perfect. The cavalry is on the way!!! Harvoni kills most of the virus in the first few weeks. Grateful to have you on the forum. Keep posting!!!
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Making the Most of Post Treatment
« Reply #204 on: February 19, 2016, 10:58:43 am »
Rosie13, so happy for your SVR!!!  I am so hoping to post such fantastic news in the near future.  You know, that's what this is all about -- our futures, our quality of life, our hopes and dreams getting back in the forefront of our lives. That's how I picked this "name".  I want my future back! I can see how many people chose to stop posting after they get their lives back, but I am very grateful to have found this particular thread, as I think it will provide some good inspiration when I need it. I'll probably be primarily posting under "starting Harvoni" in the "on treatment" topic area. I'm going to focus on the POSITIVE, truly believe in the power of that, and am just ready to get on this train! Thanks, FT
Logged
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 Rosie13

  • Member
  • Posts: 297
Re: Making the Most of Post Treatment
« Reply #205 on: February 19, 2016, 12:13:14 pm »
 Future Thinker, I will follow you with excitement because you are way ahead of the game with your positive attitude. I was afraid of everything. I was not happy with my gastro dr. so I drove 4 hours to find another one. I was so glad I did because this group had a team that handles denials & appeals & I had no idea it would be hard to get approval because I believed that I had paid premiums for years & how could they do that? I did not know about the forum yet either but somehow I found this unbelievalbe gift ...with so many wonderful minds who were ahead of me in all the aspects of treatment & guided all of us to calmly walk the path they paved. It has been the best thing diguised as the worst thing. There are people on this forum who just read & do not post their fears & you may help lots of people without ever knowing. I am so glad we are meeting now so when its time to cheer it will be awesome ! Happy Friday! 
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Making the Most of Post Treatment
« Reply #206 on: February 19, 2016, 12:42:23 pm »
Agree, agree, agree!  You may not have read my post under "Take it all the way to the state if you have to" under "Considering Treatment" -- I've been waiting for this approval for nearly a year.  Now, this a.m., there's some question w/the prescription, so hopefully this minor glitch will be quickly resolved and they will send me my miracle pills! I've been following this website since I was diagnosed in 2011, but didn't start posting until last year, after I was denied by my insurance co. It's not been a fun year with all this fighting for coverage, but the state is making them pay for this treatment and I am ready for it! I truly am grateful these DAAs have been developed for us and plan to stay focused on that. So many on this forum have been thru multiple treatments and paved the way for the rest of us to have more effective and safer treatments. Lots to be thankful for! FT
Logged
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 Rosie13

  • Member
  • Posts: 297
Re: Making the Most of Post Treatment
« Reply #207 on: February 19, 2016, 04:01:21 pm »
FT, I was hands on with the specialty pharmacy. If there is a glitch they will hopfully have answers for you. Once you take charge they have all your calls on record...makes a big difference.Happy Friday!
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #208 on: February 21, 2016, 03:43:49 pm »
Thanks FT and Rose for your dialogue!  I haven't been posting much lately for a few reasons.  I had a stomach bug, a hurt foot and a host of misc stuff going on plus very busy business (which I'm grateful for.)

Thank you FT for bringing me back to what my intention is for getting cured... to live a great life!!!  Some old habits die hard just like the virus.  With all of the stuff going on - I'm know I'm different, and it is different to live without HepC.  It's a new opportunity for a new life!

 Even though I haven't been feeling peak lately, I have seen more and better good feeling times than I have in years.   I know I can just schedule something and not be so guarded with my energy as I can handle it now.  It's an interesting concept to not have to be quite so protective and it takes effort to do that.

FT, I know your treatment glitch will get worked out.  Let me know please! 
Tell me where you are posting and I'll follow.  With your mindset and attitude, the sky's the limit!  Once we have decided to get this treatment, nothing come hell or high water will stop it.  I found this forum about a year ago when I first learned of Harvoni.  I didn't sign up until right before I started taking it in July but I read it frequently and it made me an kind of expert on this disease and it's treatment.   You'll find yourself educating others, even in the medical profession.

Rose, you are right about me, I do have a element of "rescuer" in me.  That's why Polly, the stray cat is on my front porch right now!  Ha.  8)
Logged
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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Making the Most of Post Treatment
« Reply #209 on: February 21, 2016, 03:48:39 pm »
Heres me making the most of post-treatment
https://www.hepmag.com/blog/cuban-journey
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #210 on: February 21, 2016, 03:54:30 pm »
Awesome article Philly!  I love your writing style!  Yep, you are living the "Post"... which is the object of the exercise (after saving our lives, of course)! 
Logged
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 Rosie13

  • Member
  • Posts: 297
Re: Making the Most of Post Treatment
« Reply #211 on: February 21, 2016, 04:47:19 pm »
Hi Bree, glad you're back on the upswing after the pains...I am having weird rashes here & there.not blaming the expensive pill but...it is very stubborn not healing.

Philadelphia,your trip to Cuba sounds like a great adventure.The guy watching  & driving was hilarious but I hope you got out fast!Great read!
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Making the Most of Post Treatment
« Reply #212 on: February 21, 2016, 05:27:14 pm »
Bree, thanks for "coming back", I just wanted to let you know what an awesome read this thread is and I really think everyone who is starting the "cure train" needs to be aware of it, and use it as needed during our journey. People tend to post with problems, vs. success, that's just the way we seem to be wired, and it's good to have both perspectives here for educational purposes. I just posted my glitch issue under "Take it all the way to the state board if you have to", it should be resolved by early this week and I will board the Harvoni train at last! I thought I'd post under "Starting Harvoni" once I'm aboard. Life is full of ups and downs/ good and bad, we all know this........ we just need to try to focus on the positive and, really, try to be grateful for each day. Definitely not always easy, but worth a good try. I'm just very, very grateful that these new DAAs have been developed and the course of this treatment is nothing like it was in the past for so many others.

Rosie13, thanks for the heads up w/ staying hands on with the specialty pharmacy..... you were spot on!!  Thanks again for the well wishes!!  FT
Logged
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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Making the Most of Post Treatment
« Reply #213 on: February 21, 2016, 05:35:37 pm »
Philly, loved your Cuba post! My husband and I would LOVE to go there whenever they lift the US tourism restrictions more.  I'm originally from FL and "the evil Cuba" was a part of my schooling. Too funny they knew all about Skippy ---- it really is a small world!!  FT
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #214 on: February 21, 2016, 05:56:32 pm »
FT - I hear you... when I was on treatment I couldn't even go to the post treatment threads as it freaked me out and scared me so much.  I don't want to live my life waiting for blood test results to tell me if I'm o.k.  Having said that some folks have had a very hard time and are still so gracious about it.  I'm convinced at least some of it is the habit we have learned to reinforce with our point of view (fear). 

Some of us have no one to talk to about our fears, symptoms and concerns... so this forum is it.  We still have a responsibility as to how and what we project out there in the world.

Yes, we all have anxiety, for sure, but to accept that as a mindset is such a waste of the present.  It's a personal development challenge to live a less "fear-based" life.  Have I mastered it?  No way!  But I'm aware enough to know it is worth it to make the effort to chip away at breaking the cycle.

I like what Lucinda talks about - waiting is an art - or waiting gracefully is an art.
So the challenge/opportunity comes to how to acknowledge/accept our present, and be masterful about our intention for living life.  And, I guess living well is an art too... one that I am working on.

After the fear of relapse subsides, then the challenge/opportunity is really how to live... which is the opportunity anyway, hepc or not.  For us, with a new lease on life, it can be even more daunting.  Just glad to be on the journey.... and so grateful to be cured!   8)
Logged
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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Making the Most of Post Treatment
« Reply #215 on: February 21, 2016, 06:30:35 pm »
Yes, I can't deny that the words "relapse" and "RAVs" aren't in my mind, but I just have to look forward, give the Harvoni its due, and pray very hard I reach SVR and stay that way! There were many times I, too, couldn't read some of the info, since I was still fighting to even TRY treatment! But now that that initial fight has been won, I just have to look forward and focus on my health during the next 12 weeks, both mental and physical. Life w/o HCV? A more-normal energy level some day???  What wonderful thoughts! I can count on 1 hand how many people I've shared this HCV diagnosis with, so this forum truly is a blessing. Thank you Hepmag and everyone else who has posted about their journey!  FT
Logged
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 J.R.

  • Member
  • Posts: 38
Re: Making the Most of Post Treatment
« Reply #216 on: February 22, 2016, 02:41:42 am »
FT- Share some of the same thoughts.  Outside of my parents,sisters, wife and best friend, no one knows my status. My wife says I am the carefree one. I dont worry over much.  I dont fret over the unknown. Why worry over something that may not exist. But when I was diagnosed. That aspect changed. I'm worrying that her or my kids may come in contact with my blood. Im protective of personal grooming items. How much longer will Hep be with me. (Before curent treatments) will Hep be my demise?  Every abdominal cramp is that the C doing more damage?
Glad to have found this forum/website. Happy to read the concerns and triumphs others have experienced in eliminating the virus from their bodies. Hope, when I disembark this ride, I'll be waving a joyous goodbye to C and remain undetected.  I, too, want a normal life back!
Logged
Contracted-mid 80s
Diagnosed- 2008
Treatment Naive
AST-34 (01-16 test)
ALT- 71 (01-16 test)
VL-4.1 mil (01-16 test)
GT- 1a
Fibrosure-0.33 (F1-F2)
Harvoni tx start 2/20/16
HCV RNA Quant- undetected (3-7-16)
AST-16. ALT-30 (3-7-16)
AST-19. ALT-39 (3-21-16)
HCV RNA  Quant- undetected (3-21-16)
AST-17, ALT-38 (4-1-16)
HCV RNA- Undetected (4-1-16)

EOT-4-15-16
HCV  RNA- UNDETECTED
AST- 21  ALT- 42

4 wk EOT (5-13-16)
HCV- undetected
AST-17  ALT- 36

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Making the Most of Post Treatment
« Reply #217 on: February 22, 2016, 10:11:15 am »
JR, many people on this forum have experienced the same thing as you. That's what is nice, because you are talking to people that yes, truly understand what you are feeling and it helps to know that. No one, a spouse, sibling, or friend can possibly understand what it is like to have this disease. They can emphathize but they cannot truly understand. It's like having an elephant on your back, and no one else but you can see it, and it is slowly crushing you to the ground while people watch. I was so paranoid about my husband and children somehow getting this from me, thank god they didn't.  I will tell you at your 12 week end of treatment test when you are undetected it is a very very surreal moment in your life .  I remember I looked at my doctor and said what do I do now? I mean I have lived with so long. He said its normal to feel this way. I could walk around and not feel like a black cloud was always following me, I wasn't a big infection around my children. I still find myself hiding my toothbrush and razors from my children. It's not just something you can turn off, but I am getting there. One thing I am doing is a couple people have private messaged me that are trying to get treatment or have just started treatment and it comforts me that I can help them through the process maybe doing some good for someone else like this forum did for me. Your gonna do great, and your going to get the elephant off your back


Scout
Logged
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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Making the Most of Post Treatment
« Reply #218 on: February 22, 2016, 12:09:02 pm »
Scout, what you said is exactly why we are all on this forum -- it is a great place, a real comfort in a windstorm of emotions and fears.  What a way for you to start 2016, with 12 wk EOT SVR! I am very hopeful that 2016 will be my year, too, and many, many others.  Thanks for your help, FT
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #219 on: February 22, 2016, 03:43:28 pm »
What Scout said... there are no words to describe the feeling of seeing UnDetected
on your report, especially 12 weeks post treatment (or at any time for that matter).
It's hard to wrap your brain around... and still is.  Sometimes I'll just text one of my friends (only a few know, my close inner circle of about 5) and say #grateful or
or we'll just be texting and I'll say #hepc free me!  It kind of puts things in perspective. 

FT and JR - so happy you are on the journey for freedom!!!

Have a happy week everyone!
Logged
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 Scoutdoy

  • Member
  • Posts: 452
Re: Making the Most of Post Treatment
« Reply #220 on: February 22, 2016, 08:12:36 pm »
Yes FT,,,2016 is going to be the year of me! It's my turn to have a good year. I think for all of us on this forum 2016 is going to be good!



Scout
Logged
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 J.R.

  • Member
  • Posts: 38
Re: Making the Most of Post Treatment
« Reply #221 on: February 23, 2016, 12:07:54 am »
Scoutdoy- thank you for the words of encouragement. You've said exactly how I feel about the "elephant" in the room.
Logged
Contracted-mid 80s
Diagnosed- 2008
Treatment Naive
AST-34 (01-16 test)
ALT- 71 (01-16 test)
VL-4.1 mil (01-16 test)
GT- 1a
Fibrosure-0.33 (F1-F2)
Harvoni tx start 2/20/16
HCV RNA Quant- undetected (3-7-16)
AST-16. ALT-30 (3-7-16)
AST-19. ALT-39 (3-21-16)
HCV RNA  Quant- undetected (3-21-16)
AST-17, ALT-38 (4-1-16)
HCV RNA- Undetected (4-1-16)

EOT-4-15-16
HCV  RNA- UNDETECTED
AST- 21  ALT- 42

4 wk EOT (5-13-16)
HCV- undetected
AST-17  ALT- 36

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Making the Most of Post Treatment
« Reply #222 on: February 23, 2016, 10:57:26 am »
Scout, how funny, but that's exactly what I said to myself around new years ---- this was going to be the year for ME, and little did I know at that point that the state IMR would rule in my favor!

 It's looking like I will start this miracle drug tomorrow or Thursday, still having some stupid issue with the prescription!!!! All keep fingers crossed, please!!  FT
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #223 on: March 20, 2016, 10:30:59 pm »
Well, I wanted to make my "formal announcement" on my thread, Making the Most of the Post.... drum roll.  24 week Negative, Not Detected.  I AM CURED.   8)

How did I celebrate?  Having ahi burrito wrap with Else... can you believe it?
She's in Hawaii and we had dinner plans, and wa la, my results came in...
So nice to spend time with you Else!  My new forum friend and friends for life.

I knew I was cured, but funny how those butterflies come in when one opens those results. Keep the faith folks... we are getting cured left and right.  Trust it! 

Oh and ast/alt normal.  Shock and awe.  I love Harvoni and a new life awaits!

Happy Happy Happy Dance!  Bree
Logged
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 Scoutdoy

  • Member
  • Posts: 452
Re: Making the Most of Post Treatment
« Reply #224 on: March 20, 2016, 11:05:32 pm »
Woowoo ...congrats Bree!!!! You are seriously FREE!


Scout
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #225 on: March 21, 2016, 12:00:31 am »
Quote from: Scoutdoy on March 20, 2016, 11:05:32 pm
Woowoo ...congrats Bree!!!! You are seriously FREE!


Scout

Thanks Scout!  And, by the way, "Fre" is my nickname and has been for years!  Ha.
Logged
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Making the Most of Post Treatment
« Reply #226 on: March 21, 2016, 12:54:11 am »
Hi Bree congrats again and say hi to Else for me aloha :)
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #227 on: March 21, 2016, 01:07:27 am »
Quote from: Lynn K on March 21, 2016, 12:54:11 am
Hi Bree congrats again and say hi to Else for me aloha :)

Thanks Lynn!  I'll be seeing her a couple of more times while she's here.  So cool.... xo!
Logged
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: Making the Most of Post Treatment
« Reply #228 on: March 21, 2016, 03:32:26 am »
Bree, it's wonderful to hear your great news. It must be especially sweet after the hell of pegint/riba.
Logged
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Making the Most of Post Treatment
« Reply #229 on: March 21, 2016, 06:10:47 am »
Wonderful news Bree! So pleased for you. :)
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: Making the Most of Post Treatment
« Reply #230 on: March 21, 2016, 02:07:24 pm »
 ;D 8) ;D 8)
Logged
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 KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Making the Most of Post Treatment
« Reply #231 on: March 21, 2016, 02:10:38 pm »
I know I said it on another thread already but... CONGRATS BREE on making SVR24!!

kim  8) 8) 8)
Logged
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #232 on: March 21, 2016, 02:34:41 pm »
Quote from: gnatcatcher on March 21, 2016, 03:32:26 am
Bree, it's wonderful to hear your great news. It must be especially sweet after the hell of pegint/riba.

Thanks Gnatty!  Yep, it is really sweet after that last extreme treatment fiasco.
Aren't you about ready for your 24 weeks?
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #233 on: March 21, 2016, 02:36:35 pm »
Quote from: Philadelphia on March 21, 2016, 06:10:47 am
Wonderful news Bree! So pleased for you. :)

Why thank you Philly!!!! 8)  Excited to just get on with life.  I like what you write about in some posts, that one day you just don't think about it anymore, that you are just doing life (paraphrasing)!   
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #234 on: March 21, 2016, 02:37:07 pm »
Quote from: Else on March 21, 2016, 02:07:24 pm
;D 8) ;D 8)

See you later today Else!  I can't believe I'm saying that!
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #235 on: March 21, 2016, 02:37:19 pm »
Quote from: Else on March 21, 2016, 02:07:24 pm
;D 8) ;D 8)

See you later today Else!  I can't believe I'm saying that!
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #236 on: March 21, 2016, 02:39:02 pm »
Quote from: KimInTheForest on March 21, 2016, 02:10:38 pm
I know I said it on another thread already but... CONGRATS BREE on making SVR24!!

kim  8) 8) 8)

Thanks Kim!  I'm having a strange thing where after I post it goes back to the beginning of the thread.... that's why I had a double post earlier.  So strange....  but hey, I'm hepc free!
Logged
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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Making the Most of Post Treatment
« Reply #237 on: March 21, 2016, 06:06:35 pm »
Bree -- HAPPY DANCING TIME!!!!!!!  Fantastic news!!  FT
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #238 on: March 21, 2016, 06:12:33 pm »
Quote from: FutureThinker on March 21, 2016, 06:06:35 pm
Bree -- HAPPY DANCING TIME!!!!!!!  Fantastic news!!  FT

Thank you FT.  It's sweet after all!  To go on without this burden... takes some mindset adjustment for sure. 8)
Logged
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 Scoutdoy

  • Member
  • Posts: 452
Re: Making the Most of Post Treatment
« Reply #239 on: March 21, 2016, 09:35:26 pm »
Bree, I didn't even realize that my 24 week test should have been this week. I called and I am gonna take the test next week...


Scout
Logged
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 gnatcatcher

  • Member
  • Posts: 1,372
Re: Making the Most of Post Treatment
« Reply #240 on: March 21, 2016, 09:51:29 pm »
Scout, with your terrific ALT and AST, you're golden.
As for forgetting to take the labs, I almost did. You must have a life ;)
Logged
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #241 on: March 21, 2016, 11:03:28 pm »
Quote from: Scoutdoy on March 21, 2016, 09:35:26 pm
Bree, I didn't even realize that my 24 week test should have been this week. I called and I am gonna take the test next week...


Scout

Yea, pretty cool when you forget to take the test!  I had counted it out and written it on my calendar from the beginning.... (I'm one of those). 8)
Logged
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 Scoutdoy

  • Member
  • Posts: 452
Re: Making the Most of Post Treatment
« Reply #242 on: March 21, 2016, 11:34:11 pm »
For the first time in a long time, i haven't thought about it. Hmmmm... That's weird!! LOL


Scout
Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #243 on: March 21, 2016, 11:39:13 pm »
Quote from: Scoutdoy on March 21, 2016, 11:34:11 pm
For the first time in a long time, i haven't thought about it. Hmmmm... That's weird!! LOL


Scout

That's awesome!!!
Logged
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 Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Making the Most of Post Treatment
« Reply #244 on: March 22, 2016, 05:22:03 am »
My 24 week results are due this week too. I had no idea there were so many of us that graduated at the same time!
Logged
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Making the Most of Post Treatment
« Reply #245 on: March 22, 2016, 05:26:43 am »
We're very lucky to be part of this large, expressive cohort.
Logged
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline MelHu

  • Member
  • Posts: 33
Re: Making the Most of Post Treatment
« Reply #246 on: March 23, 2016, 09:35:19 pm »
Hello everyone! 
I just received an email from my NP that my 6 month EOT came back CLEAR!!!!! I am truly ecstatic!   I wish it for all!!!!  And for the ones that are still waiting for their moment don't give up hope!!!  Miracles can happen. It's been exactly one year from when I first discovered I was infected. Probably from back in the 70's. Don't know how or when but I got it!!  My 3 sons all tested negative so we were fortunate that they didn't contract the virus while I was pregnant with them. I feel like I've been given a second chance at life.  Now hopefully my liver will heal a little because I'm at F3 and I also have a fatty liver that pains me quite often. Forge forward everyone, we are truly living in the best time for this disease!!!! Slay the demons!!!
Logged
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Making the Most of Post Treatment
« Reply #247 on: March 23, 2016, 09:43:34 pm »
Congratulations, MelHu! Yes, surely your liver will heal, perhaps even quite a lot. My hepatologist is very optimistic about fibrosis scores improving once the HCV is cleared.
Logged
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline coastal girl

  • Member
  • Posts: 36
Re: Making the Most of Post Treatment
« Reply #248 on: March 23, 2016, 11:31:34 pm »
It is so reassuring to read post that tell of hepatologist who are optimistic about improving fibrosis scores.  I just had my first appt with a new gastro/hepa doctor and she informed me that they believe that there can be some healing but they do not order a new scan...I don't understand why...she said that they are confident that the first scan is a true reading of the condition of your liver of which mine is F4 which of course leads to a lifetime of 6 months follow ups..ultra sound and blood draws.  What if after a few years my scan read, miraculously, F2 would I still be considered cirrhotic..."we don't order new scans"  couldn't get any more out of her!!!  I felt really uninformed, maybe they just don't know yet?
So frustrating!  I talked to a member account rep at the radiology lab and he confirmed that the reading can be greatly effected by inflammation and that most Doctors in the past want a high score as to get patients approved for treatment which I certainly wanted myself...but I also want some improvement!!!  And a doctor that is, not unrealistic, yet may give me hope...I guess that's what I count on all of you for :)
Logged
8/6/15
1a, shear wave elastography F4
ast-114 alt-80,
viral load 5,941,282

Start Harvoni 9/3/15
ast-131 ast-97, viral load 12,997,415

9/29/15 4 week labs VL 64
ast 34 alt 17
11/25/15  12 wk EOT Undetected!
AST 29 ALT 17  Albumin 3.8 Bil .06

12 week PostTX UNDETECTED!!!
AST 33 ALT 20  Bil. 0.9 Albumin 3.9

25 week Post Tx  UNDETECTED

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Making the Most of Post Treatment
« Reply #249 on: March 23, 2016, 11:51:50 pm »
Even if we do step away from the edge and show as F3 at some point in time we will likely still need to have AFP and ultrasounds every 6 months because we had or have cirrhosis. Also the scans are not that accurate at mid range damage the best a fibroscan can say with confidence is no damage or cirrhosis.

Really for us test numbers mean little the things that matter is not developing any further symptoms of cirrhosis.

Per the AASLD guidelines "Recommended Follow-up for Patients Who Achieve a Sustained Virologic Response (SVR)."

Surveillance for hepatocellular carcinoma with twice-yearly ultrasound examination is recommended for patients with advanced fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR.
Rating: Class I, Level C

SVR typically aborts progression of liver injury with regression of liver fibrosis in most but not all treated patients. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Because of lack of progression, patients without advanced liver fibrosis (ie, Metavir stage F0-F2) who achieve an SVR should receive standard medical care that is recommended for patients who were never infected with HCV.

Among patients with advanced liver fibrosis (ie, Metavir stage F3 or F4) who achieve an SVR, decompensated liver disease (with the exception of hepatocellular carcinoma) rarely develops during follow-up, and overall survival is prolonged. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients who have advanced fibrosis or cirrhosis continue to be at risk for development of hepatocellular carcinoma after achieving an SVR, although the risk in these patients is lower than the risk in persistently viremic patients. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients with cirrhosis who achieve SVR experience increased survival (compared with patients with cirrhosis who are untreated or in whom treatment fails), but still may be at some risk for hepatocellular carcinoma; thus, they should continue to undergo regular surveillance for hepatocellular carcinoma despite the lowered risk that results after viral eradication. (Bruix, 2011) The risk of hepatocellular carcinoma among patients with advanced fibrosis prior to treatment but who have regression to minimal fibrosis after treatment is not known. In the absence of data to the contrary, such patients remain at some risk for hepatocellular carcinoma and should be monitored at regular intervals for hepatocellular carcinoma.

Liver fibrosis and liver function test results improve in most patients who achieve an SVR. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Bleeding from esophageal varices is rare after an SVR. (Morisco, 2013); (Morgan, 2010); (George, 2009); (Morgan, 2013); (Singal, 2010) Patients with cirrhosis should receive routine surveillance endoscopy for detection of esophageal varices if not previously done and these should be treated or followed up as indicated. (Garcia-Tsao, 2007)

Patients in whom an SVR is achieved but who have another potential cause of liver disease (eg, excessive alcohol use, metabolic syndrome with or without proven fatty liver disease, or iron overload) remain at risk for progression of fibrosis. It is recommended that such patients be educated about the risk of liver disease and monitored for liver disease progression with periodic physical examinations, blood tests, and potentially, tests of liver fibrosis by a liver disease specialist.


But we are cured so we should not get worse and maybe get better with time but we still will need to be monitored.
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline MelHu

  • Member
  • Posts: 33
Re: Making the Most of Post Treatment
« Reply #250 on: March 24, 2016, 01:37:58 am »
Thanks everyone for those encouraging words.  At least having SVR stops progression of the disease. Does anyone know the  kinds of foods and diet that could help  to build the liver up? I'm at a loss. I am a little concerned because I have been having some pain around the liver and a little indigestion.I sure appreciate everyone's input
Logged
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Making the Most of Post Treatment
« Reply #251 on: March 24, 2016, 01:49:48 am »
There really is no way to build the liver up. What we can do is avoid further harm. I have heard a heart smart diet is a liver friendly diet. Avoid salt especially if you have edema and ascities. Carrying excess weight can increase fat in the liver so being in normal BMI range can help reduce future damage to your liver also.

If you have significant fibrosis that means scar tissue has replaced healthy liver tissue. If you have scars think about how long it takes scars to heal they don't really they just become less noticible with time.

So it is with F4 fibrosis aka cirrhosis our livers are scarred up old warriors.

Being kind to our livers is all we can do and wait for time to heal.
« Last Edit: March 24, 2016, 01:54:49 am by Lynn K »
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Making the Most of Post Treatment
« Reply #252 on: March 24, 2016, 05:34:04 am »
Lynn, to me the most important part of that AASLD excerpt is, "The risk of hepatocellular carcinoma among patients with advanced fibrosis prior to treatment but who have regression to minimal fibrosis after treatment is not known. In the absence of data to the contrary, such patients remain at some risk for hepatocellular carcinoma and should be monitored at regular intervals for hepatocellular carcinoma." As more evidence comes in, the guidelines are likely to change.

My hepatologist seems to be very interested in gathering more evidence from his large cohort of cured HCV patients. He scheduled my FibroScan for 9 months after my EOT so that there is time for enough of a decrease in kPa that I'd lose the cirrhosis label. (Of course in my case I already have the contradictory FibroSure F2, taken just a day-and-a-half after the FibroScan.)
Logged
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Making the Most of Post Treatment
« Reply #253 on: March 24, 2016, 05:43:44 am »
I liken it all to the example of quitting smoking and lung cancer. For those who smoke they have a higher risk of lung cancer. When they quit the risk decreases and for every year after quitting smoking the risk of lung cancer decreases but if I remember correctly it takes 20 years for the risk to be the same as someone who never smoked.

So for us with cirrhosis we have an immediate reduction of HCC risk and my guess is the longer we go without developing HCC the less likely we ever will.

We are all pioneers in this undiscovered country of freedom from hep c and we are blazing the trail of what this will mean for us all.

I am interested to see if I have any changes with my long standing well established diagnosis of cirrhosis it would be interesting to see if there are any changes from my fibroscan of 27 from October 2014 since I completed treatment almost 11 months ago
« Last Edit: March 24, 2016, 05:48:58 am by Lynn K »
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Rosie13

  • Member
  • Posts: 297
Re: Making the Most of Post Treatment
« Reply #254 on: March 24, 2016, 01:01:26 pm »
Hi Everyone! I am delighted to be reading all the great news today! BREE!!! So exciting to be SVR24! Chills & cheers! I will be going to Mayo Clinic in May for my final checkup ( I HOPE!) There will be another Fibroscan & labs & a consult about the results. I have to drive up a day ahead & stay till it is all completed. No worries...I hope to see some improvement in the score but if not they did tell me it could take up to a year for any changes. Grateful for all the posts ...they are heaven on earth!
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #255 on: March 24, 2016, 02:00:00 pm »
Thanks Rosie!  And, that's awesome for you too!  I'm so glad you are getting such thorough medical care too!
Logged
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 Scoutdoy

  • Member
  • Posts: 452
Re: Making the Most of Post Treatment
« Reply #256 on: March 24, 2016, 02:07:38 pm »
You are going to do great Rosie,,,,it's your turn for great results. 2016 is our year...for our group here on the forum

 Scout
Logged
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 KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: Making the Most of Post Treatment
« Reply #257 on: March 24, 2016, 02:08:48 pm »
Quote from: MelHu on March 23, 2016, 09:35:19 pm
Hello everyone! 
I just received an email from my NP that my 6 month EOT came back CLEAR!!!!! I am truly ecstatic!   I wish it for all!!!! 

Congrats MelHu!!! So many SVR24s coming up right now. It's great news all the way around. :)

kim
Logged
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #258 on: March 24, 2016, 02:11:06 pm »
Yes, Mehu you as well!  I'm so happy and you sound just thrilled!  It's great to know we are rid of this virus once and for all! 8)
Logged
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 beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Making the Most of Post Treatment
« Reply #259 on: March 24, 2016, 06:03:44 pm »
So I got my (svr24) results.  The wait was every bit as nerve racking as SVR12.  I got the results on the small screen of my cell at the end of a long day.  I almost could not open the PDF.  Anyway the result of the PCR quant were displayed differently and the number quotient was  <20 not 15.  But the arrow was pointing south so I thought dude I done...and celebrated.  Woke in the middle of the night fearing the worst when I thought something was amiss.  Got to my computer and read it again.  Said; HIV Quant.  So they screwed up I had to go back today for bloods.  Well I don't have HIV but don't know if I am truly C free.  My aly/ast were good.  I guess me and Tommy will get our results at the same time.  :) 
Logged
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Making the Most of Post Treatment
« Reply #260 on: March 24, 2016, 07:55:55 pm »
beto, oy, veh! You and Tommy have something else in common: incompetent labs. Remember how Tommy's lab lost his first VL result but billed him anyway?

Glad your alt and ast are good. Time to go do something so enjoyable it takes your mind off the extra waiting.
Logged
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Making the Most of Post Treatment
« Reply #261 on: March 24, 2016, 08:35:54 pm »
Beto....Honestly I think that would give me a heart attack. Since I completely forgot about getting my 24 week test done I am going on Tuesday, so I should have my results by Friday.

Scout
Logged
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 coastal girl

  • Member
  • Posts: 36
Re: Making the Most of Post Treatment
« Reply #262 on: March 24, 2016, 09:13:46 pm »
It seems that 24 week follow up is standard.  My new Doctor said that the 12 week was considered a cure but said nothing about 24 week test.  I certainly would feel better with a backup 24 week test!  I just changed Doctors because I was getting incorrect lab results read from the last one and a whole mess of info...not sure this one is going to be anymore comforting :( 
I can't afford to keep changing Doctors so I guess I'll just show up to get ultrasounds twice a year with liver panel and request what else I would like, such as 24 week post test and a liver scan at one year which she says they are not in the habit of ordering...Grrrr!!
Logged
8/6/15
1a, shear wave elastography F4
ast-114 alt-80,
viral load 5,941,282

Start Harvoni 9/3/15
ast-131 ast-97, viral load 12,997,415

9/29/15 4 week labs VL 64
ast 34 alt 17
11/25/15  12 wk EOT Undetected!
AST 29 ALT 17  Albumin 3.8 Bil .06

12 week PostTX UNDETECTED!!!
AST 33 ALT 20  Bil. 0.9 Albumin 3.9

25 week Post Tx  UNDETECTED

Offline coastal girl

  • Member
  • Posts: 36
Re: Making the Most of Post Treatment
« Reply #263 on: March 24, 2016, 09:25:03 pm »
Lynn,
Thank you for the AASLD guidelines info and the comparison to smokers and lung cancer...makes sense!!  Darn though, I thought it was 10 years to have the lungs of a non smoker.  Oh well, 7 more years on that one  :)
I have every intention of following up with my ultra sounds to keep an eye on whats going on in there...and thanks to you Lynn it now makes more sense!!!  Your the best :)
Logged
8/6/15
1a, shear wave elastography F4
ast-114 alt-80,
viral load 5,941,282

Start Harvoni 9/3/15
ast-131 ast-97, viral load 12,997,415

9/29/15 4 week labs VL 64
ast 34 alt 17
11/25/15  12 wk EOT Undetected!
AST 29 ALT 17  Albumin 3.8 Bil .06

12 week PostTX UNDETECTED!!!
AST 33 ALT 20  Bil. 0.9 Albumin 3.9

25 week Post Tx  UNDETECTED

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #264 on: March 25, 2016, 01:39:01 am »
Hey Beto,

My doctor ordered HBV test (not HCV) at the EOT - it was me who caught it on the results.  Now I check before I go in and again when I go in for blood work because who knows what they order!

And, I did my last follow up with my doctor today (I'm not a fan of him for many reasons).  I said Well, I'm cured.  He said almost, you are 99%.  Perplexed and disappointed, I said when should I come back at 9 or 12 months.  Then he realized it was my 24 week check (duh, seriously) then he said you don't need to come back and circled "HVC Negative" on the test paper then wrote " = cured!"  That felt good I must say.  It's also good I'm through with that office. 

In the end, I got what I wanted.  I paid my dues.  I set an intention.  I didn't take no for an answer.  And, I got cured.  And, I am grateful, to da max!!!




 
Logged
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 beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Making the Most of Post Treatment
« Reply #265 on: March 25, 2016, 11:57:26 am »
Labs are getting confused what with all of the different tests for hepatitis.  So Bree, you did re-take the 24 then? Doctors seem to be 50/50 on 12 or 24 weeks.  I have always just considered the 6 months the one where I would feel safe.  I am too neurotic to ever believe I am actually cured...teehee.

Hey scout, looks like you me and Tommy next week for SVR royale.  Yes I don't know why I still get so crazy nervous opening the lab result...but I do.

Gnatty- Yes I'm going to be so busy cooking and entertaining I won't have time to stress about anything.  I get an email from the lab and I can access the results before my Docs office.

So, see y'all at SVR 24 !!!  woooohoooo!  Everyone have a good Easter.  On your Keaster.  :)
Logged
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline MelHu

  • Member
  • Posts: 33
Re: Making the Most of Post Treatment
« Reply #266 on: March 25, 2016, 08:17:53 pm »
Thanks Else and Future Thinker. Absolutely right about this forum. I couldn't  have survived the treatment and all the processes that went with it. Everyone here has one common denominator;  Slay The Dragon!!!!! Everyone's thoughts and opinions were so valued and cherished. There were a few times is in the wee hours of the night I would get in this forum and read everyone's posts. Got me through some real dark times. I sure appreciated it
Logged
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline MelHu

  • Member
  • Posts: 33
Re: Making the Most of Post Treatment
« Reply #267 on: March 28, 2016, 05:50:21 am »
Hey Lynn
Thanks for the reply as always most welcomed. Your knowledge on this subject is first class.
And you are right Rosie, this form IS "Heaven on Earth!"  And everyone's posts Sure helped me keep my sanity going through the process. Don't know what I'd do without it.
Logged
Genotype 2b
Probably contacted in 1979
3/2015 VL 3,250,000
   Alt 70.    Ast 31 U/L
   F3 liver status
Sovaldi/ribavirin
12week duration 6/28/15-9/19/15
TX naive
7/25/15 VL 49 IU/ml
   Alt 11
8/22/15 VL 40 IU/ml detected. Alt 9
9/19/15 VL <20 IU/ml detected Alt 12
10/21/15 VL <20 IU/ml detected not-quantifiable
11/24/15  8 week EOT UNDETECTED
3/19/16  6 month EOT Undetected  SVR
I am truly blessed!!!
Finally!  I am truly thankful to be free of it!

Offline Rosie13

  • Member
  • Posts: 297
Re: Making the Most of Post Treatment
« Reply #268 on: March 28, 2016, 12:20:12 pm »
MelHu, getting through this is quite a puzzle sometimes. We are tired & feel betrayed by the medical system & have brain fog to boot. When you get the correct info on the forum you can move forward, ditch the worries & breath. Harvoni is curing us. We will all be ok...praying for the many who have not received the care yet that they deserve. I am happy that you found peace of mind here like I did. Have a wonderful day!
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #269 on: March 28, 2016, 04:23:15 pm »
Quote from: beto on March 25, 2016, 11:57:26 am
Labs are getting confused what with all of the different tests for hepatitis.  So Bree, you did re-take the 24 then? Doctors seem to be 50/50 on 12 or 24 weeks.  I have always just considered the 6 months the one where I would feel safe.  I am too neurotic to ever believe I am actually cured...teehee.

So, see y'all at SVR 24 !!!  woooohoooo!  Everyone have a good Easter.  On your Keaster.  :)

Beto, that was actually the EOT labs that my doctor ordered incorrectly.  For the 24 weeks, I got the correct ones (after the other mistaken labs I always double check).  When I went in to see him for follow up, he mistakenly thought it was the 12 weeks results instead of the 24 weeks and told me I had to have another test.  My heart sank and I said "when at 9 or 12 months"?  When he realized (because I told him) that it was the 24 weeks he was looking at, he wrote "cured" on the paper and said I don't have to come back.  Now I ask you, who has brain fog?  ha.
Logged
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 beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Making the Most of Post Treatment
« Reply #270 on: March 28, 2016, 04:39:46 pm »
Sorry Bree,

When you are thinking you are finally done only to find  someone screwed up, its tough. I got my reals' back today.  They rushed because my Doc probably yelled at them.  Undetected.  Now you hurry up and get your reals' so we can plan a party.  I am absolutely sure you are clear as a bell.  Easy for me to say...I like could barely open the results on-line.  What a wuss, hey?
Logged
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #271 on: March 28, 2016, 05:07:03 pm »
Quote from: beto on March 28, 2016, 04:39:46 pm
Sorry Bree,

When you are thinking you are finally done only to find  someone screwed up, its tough. I got my reals' back today.  They rushed because my Doc probably yelled at them.  Undetected.  Now you hurry up and get your reals' so we can plan a party.  I am absolutely sure you are clear as a bell.  Easy for me to say...I like could barely open the results on-line.  What a wuss, hey?

Hey Beto!  First, congratulations to you!!! One more feather in our group cap (Or Tommy's Texan cowboy hat) :)

 I am done!!! UND!  (It was the EOT as in day after last pill he messed up not the 24 week and he then thought the 24 weeks was the 12 weeks....) I strongly believed at 12 and 24 weeks I was undetected.  I'm keeping up with it even if doctor is not.  I took this whole process in my own hands long before I even got treatment or I wouldn't even have gotten it.  (Still got butterflies opening the test results online though). The main thing is, I'm cured and done with that doctor!!!!  I was mostly relaxed waiting on the 24 week results (I was too busy to obsess)  and had access to them online a couple of weeks before my follow up appt.  I mentioned perhaps a fibrosure followup re Fibrosis score as I was 1-2 and he said no need as the theory is stop the Hep C and liver damage stops and we can generally assume improvement from there.  And, if no cirrhosis no need to be concerned with cancer or other damage to liver.  That's his opinion (for what it's worth).   Yes, we are the lucky ones!!!
Logged
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 FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: Making the Most of Post Treatment
« Reply #272 on: March 28, 2016, 08:35:32 pm »
Hey Bree! So happy to hear all your good news, as I think I posted recently.  Re: Another Fibrosure test -- I was thinking, if I do get to SVR24, that I'd really like to see those numbers go back down to normal, too, just the enzymes and VL. So I was planning on asking about that whenever that time comes (and hopefully it will!). Maybe just add it to my annual blood work the year after SVR24.

Your thoughts, and others in that grand category of SVR24!! Still chugging along on that Harvoni train........ FT

Logged
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 Bree

  • Member
  • Posts: 576
  • "Today is a good day for a great day!"
Re: Making the Most of Post Treatment
« Reply #273 on: March 28, 2016, 11:08:31 pm »
Quote from: FutureThinker on March 28, 2016, 08:35:32 pm
Hey Bree! So happy to hear all your good news, as I think I posted recently.  Re: Another Fibrosure test -- I was thinking, if I do get to SVR24, that I'd really like to see those numbers go back down to normal, too, just the enzymes and VL. So I was planning on asking about that whenever that time comes (and hopefully it will!). Maybe just add it to my annual blood work the year after SVR24.

Your thoughts, and others in that grand category of SVR24!! Still chugging along on that Harvoni train........ FT

Well, when you get to SVR 24 (not if) you won't have a VL as it will be gone as the virus will be undetected.  Most have LFT (ast/alt) in normal range but not always for different reasons.  My doctor (ever the charmer) said he would not order a fibrosure test for me as there is no need as the liver should only get better.... (would be nice to see that as compared to a baseline of the first test.)  But forget him, if I really want one my GP will order it for me.  It's not the first time I went around him.  He argued with me about a 12 week SVR test and finally ordered it.   It was that way from before I even got treatment.  I just mentioned that so others know that have issues with doctors that they are not alone.  I didn't even know a fibroscan test existed until this forum. Like I said, ever the charmer.    I've moved on emotionally and physically.  I'm cured!!! That was the object of the exercise!  And, I'll find a way to follow up if I decide I want to.  Basking in the freedom. HA!
Logged
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 Rosie13

  • Member
  • Posts: 297
Re: Making the Most of Post Treatment
« Reply #274 on: March 29, 2016, 01:10:19 am »
Wow the good news just keeps coming! BETO & BREE  YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline KC

  • Member
  • Posts: 46
Re: Making the Most of Post Treatment
« Reply #275 on: April 23, 2016, 11:57:54 pm »
Quote from: Bree on March 28, 2016, 11:08:31 pm
Well, when you get to SVR 24 (not if) you won't have a VL as it will be gone as the virus will be undetected.  Most have LFT (ast/alt) in normal range but not always for different reasons.  My doctor (ever the charmer) said he would not order a fibrosure test for me as there is no need as the liver should only get better.... (would be nice to see that as compared to a baseline of the first test.)  But forget him, if I really want one my GP will order it for me.  It's not the first time I went around him.  He argued with me about a 12 week SVR test and finally ordered it.   It was that way from before I even got treatment.  I just mentioned that so others know that have issues with doctors that they are not alone.  I didn't even know a fibroscan test existed until this forum. Like I said, ever the charmer.    I've moved on emotionally and physically.  I'm cured!!! That was the object of the exercise!  And, I'll find a way to follow up if I decide I want to.  Basking in the freedom. HA!

Like you, I didn't know what a fibroscan was either nor did my doctor. I also found out about it on this site. His nurse is checking into it now after I asked about it. I mentioned she should get on this site and recommend it to others and she told me to stay off of it. Honest to God!
Logged
2/16/15                                     
2/16/15     VL:  3,577,985           
AST:  81  ALT: 94
Fibrosis: F1 - F2
3/18/15:  Began Harvoni  (12 week treatment)
4/16/15: VL "UNDETECTED" <15
ALT: 29   AST: 30
14 weeks post TX UNDETECTED
23 weeks UNDETECTED

Age 59
DX early 90's

KC

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Making the Most of Post Treatment
« Reply #276 on: April 24, 2016, 12:21:37 am »
Hi KC

The Internet can be the Wild West of misinformation so not surprising your nurse would try to dissuade you from getting information online there is a lot of very bad and incorrect information out there.

We are for the most part lay people just trying to do our best but we can and have made mistakes or been wrong about things. We just try our best and try to fact check as best as we can.

Mostly this should be a place where we can come together to share our experiences and mutual support to one another
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline KC

  • Member
  • Posts: 46
Re: Making the Most of Post Treatment
« Reply #277 on: April 25, 2016, 03:07:07 pm »
I understand that Lynn but, she and other health care providers should check into it before giving advice against it. I know that you cannot believe everything you hear on line, BUT....I have gathered more good info on this site than I ever would have expected. It was and still is such a great support group. It helped me a great deal while in treatment. It will be a year in June and I still pop in once in a while to see how others are doing. I still have issues but no regrets. Thank you for starting this amazing wealth of support and information.
Logged
2/16/15                                     
2/16/15     VL:  3,577,985           
AST:  81  ALT: 94
Fibrosis: F1 - F2
3/18/15:  Began Harvoni  (12 week treatment)
4/16/15: VL "UNDETECTED" <15
ALT: 29   AST: 30
14 weeks post TX UNDETECTED
23 weeks UNDETECTED

Age 59
DX early 90's

KC

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: Making the Most of Post Treatment
« Reply #278 on: April 25, 2016, 09:42:51 pm »
Yes your nurse doesn't know us and what we try to do here so just went with the standard answer of avoid internet chat rooms for advice. I really can't fault her for her answer and I figure our medical teams have better stuff to do than screen internet advice forums for accuracy but yeah too bad she dismissed us out of hand.

While we are not perfect (but who is) we do try our level best to help one another.

Surprising they didn't know about fibroscan. My doctor is the head of the liver center at a hospital in Seattle they don't seem to mind I visit these forums and discuss my findings with them. They seem to appreciate informed patients.

Maybe in your doctors office's case consider the source on them as they seem to not be up to speed like they need to be to best help their patients.

Best to you
Logged
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline KC

  • Member
  • Posts: 46
Re: Making the Most of Post Treatment
« Reply #279 on: April 25, 2016, 09:50:24 pm »
Thanks Lynn, I totally agree with you. Looking for another Doctor but they are hard to find.... Thanks for all your support.
Logged
2/16/15                                     
2/16/15     VL:  3,577,985           
AST:  81  ALT: 94
Fibrosis: F1 - F2
3/18/15:  Began Harvoni  (12 week treatment)
4/16/15: VL "UNDETECTED" <15
ALT: 29   AST: 30
14 weeks post TX UNDETECTED
23 weeks UNDETECTED

Age 59
DX early 90's

KC
Pages: 1 2 [3]   Go Up
« previous next »
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.