Hep C Discussion Forum

Members Login
Username 
 
Password 
    Remember Me  
Chatbox
Please log in to join the chat!
Post Info TOPIC: Harvoni beans and Me


Guru

Status: Offline
Posts: 1169
Date:
RE: Harvoni beans and Me
Permalink  
 


Thanks you all biggrin, 2 years!!! it's freaking unbelievable how fast time goes by It is really a journey. Seems I keep feeling just a little better then a little better. Ha! it reminds me of when I had my daughter and I expected my tummy to be flat again after birth, lol, what a disappointment that was

yea, glad I was able to just pick up and go help her. Focus outside myself, I'll say Cheddy, yea that really helped keep my mind off the ...well, everything. Now we have, hubs little bro in ICU for over a week, he overdosed and then had other complications. He was in a coma for a week. It's been hard getting info since no one can visit. 

Good to catch up with you guys...BB Iris



__________________

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

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

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

Tig


Admin

Status: Offline
Posts: 9282
Date:
Permalink  
 

That’s outstanding, Iris!  I just had a check up and everything remained the same. Perfect LFT’s and an undetected PCR. That makes for 7 years! Even though it has been 7 years, I still get that feeling before opening the results. I think that’s because we all work so hard to reach the goal.

Sorry to hear about your Mom’s fall. Thankfully you were able to come to her aid and help her through the recovery process. I worried about my parents all the time. They depend on us and it’s nice being able to help when needed.

C0B8C38F-35BA-4B57-93D8-5453F6F6C854.jpeg



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 1302
Date:
Permalink  
 

IRIS wrote:

 

I'm officially official! Got my one year post Tx and the viral load is virtually nonexistent!!! clap.gif horns.gif cake.gif party.gif Dragon done dead! w00t.gif

 

Such a good feeling isn't it? I no longer have to test for HCV, just the round of liver tests and abdominal scans to make sure all is well.

Good to hear from you Iris



-- Edited by 5-1-18 on Friday 30th of October 2020 04:39:53 AM

__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



Moderator

Status: Offline
Posts: 795
Date:
Permalink  
 

Oh my, Iris! This is so good to hear! Just being less fatigued is cause for celebration. You sound in good spirits.

I'm glad you are able to help your mom. Sometimes it's good just to focus outside of ourselves, isn't it? I'm sure your contributions have cheered her up and provided some needed security.

Argh-foot stuff.  I had a neuroma between 2 toes and I was gimping for some month. After some steroid shots, surgery was recommended. I'm glad I skipped the podiatrists recommendations. I got some facial counterstain/massage, and some "yoga toes" that fit between to stretch that tissue out. I'm entirely over it now. It's always hard to say which things help me because I throw the whole book at my ailments.

You probably already know that eating lo-carb is the key to blood sugar. So is intermittent fasting. Then there's the whole DNA thing. but I'm sure you are finding ways to self-help there.

The hair? Well dang. I bet that's maddening.

So was all of that smoke! We had it here in Western Washington, too. No birds flying. No leaves moving. It was like the world was shrinking on top of the Covid restrictions. The air quality here is excellent again, but I worry about the future of California, in particular.

Yes, the mutual emotional support is a bond indeed. I miss everyone, too, but so happy to have the bonds without the disease!

I've been plodding along with house and home and trying to find new perspectives in this modern world. At least I've had more time to focus on health.

Very good to hear from you, Iris.

Love,

Cheddy



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



Guru

Status: Offline
Posts: 1169
Date:
Permalink  
 

Guess What???????????????? chicken butt!! lol biggrin ...So, guess what?? you'll never guess. No, maybe you will. Yep, had my 2 year blood draw this October and it's officially official again. I'm still virus free! and it was the best blood test I had ever had. Was good to see everything in the "normal" range, well with the exception of the glucose, which has hovered at 99-100 for many years now. Not sure how to get those numbers down, someone said cinnamon helps to regulate your blood sugar.

ANYWAY can you believe it??? I'm glad to have that reassuring test, because every time I get fatigued I think it's back. Actually, I seem to have better recovery time from physical labor than I did before, it used to make me pretty sick AND I seem to be able to tolerate the heat better. I really noticed that this year while we were having our 120 degree heat wave... aaand in very small numbers memory seems to be improving, so YEA! Things physically are greatly improved.aww

My foot is a whole other story that seems to continually unfold, two podiatrists said nothing wrong here but two toes continue to deform and vacillate between pain and numbness ...now a sharp bump is forming on the arch of the same left foot (must have two of them LoL!) no for those of you who don't recall my toes were going numb at the end of treatment, and still are. Gah! I just don't want to go back to the dr. again. It looks like a fibroma.

About 50% of my hair has fallen out and that's pretty distressing, Hepatologist says not related to treatment, but something happened there towards the end, maybe my metabolism shifted and created these new problems? I have already tried several rounds of dermatological shampoo that was supposed to help, but it is not.

So that's about it.

Spent a couple months at moms after she had another fall in the yard because of the old dead lawn, she needed a lot of help while her bumps and bruises healed... so, I also installed a DG surface for her to get to her roses in her walker with ease. (only 440sq ft.) That's how I know this treatment has done well, that kind of labor would have killed me, I did get a sciatic flair up, but the fatigue was not even a factor other than being just tired at night. It came out lovely, we put some potted plants and a bird bath out there to spruce it up a bit. I can relate to Hoodie who said the smoke was bad, We hade the Dolan fire smoke, OMG orange sky every day for weeks and weeks was depressing. Reminded me of the sixties in L.A. That's it...no really.

Miss you guys! Thank you Jill, Scruffy, Cheddy, Tig, 5, PamBee, Obs, and everyone... I'm am deeply emotionally indebted to everyone here.

Blessings, Iriss



__________________

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

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

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



Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Congrats Iris!!  biggrin  Just seen your post, thrilled for you!!  Hope you`re keeping well these days.  smile xx

 



__________________

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.

 

 



Guru

Status: Offline
Posts: 500
Date:
Permalink  
 

Congratz  this has been a long time coming.



-- Edited by Scruffy on Monday 11th of November 2019 06:14:38 AM

__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



Moderator

Status: Offline
Posts: 795
Date:
Permalink  
 

Ditto that!  Good work, Iris.How are you feeling these days?



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 

Tig


Admin

Status: Offline
Posts: 9282
Date:
Permalink  
 

Hey Iris,

I fixed my message! I’m so happy for you. You fought a long, hard battle and I know everyone here is dancing! Picture all of us together, line dancing to the tune Dead Dragon Stomp, woohoo!!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 1302
Date:
Permalink  
 

IRIS wrote:

 

I'm officially official! Got my one year post Tx and the viral load is virtually nonexistent!!! clap.gif horns.gif cake.gif party.gif Dragon done dead! w00t.gif



-- Edited by 5-1-18 on Saturday 9th of November 2019 07:11:09 PM

__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



Guru

Status: Offline
Posts: 1302
Date:
Permalink  
 

hahahah, i tried to put you in quotes iris...

 

yes indeed , it is iris!



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



Guru

Status: Offline
Posts: 1169
Date:
Permalink  
 

You GUYS>>> It's not 5 it's ME!!!!!!!!!! read down belowhmm



__________________

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

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

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

Tig


Admin

Status: Offline
Posts: 9282
Date:
Permalink  
 

Congrats, Iris  I remember how great I felt when I got that one year confirmation of SVR. It was glorious! I feel the same way today. I just got the results back on my recent tests, I’m still SVR at the 6 year mark. It never gets old reading our favorite word  “Undetected”.



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Member

Status: Offline
Posts: 9
Date:
Permalink  
 

Congratulation, 5!!!!!!! Thats awesome news!



__________________

Pam

F, 56, DX 10/2019, TX Pending, GT 2B, F2, VL 250,000



Guru

Status: Offline
Posts: 1302
Date:
Permalink  
 

I'm officially official! Got my one year post Tx and the viral load is virtually nonexistent!!! clap.gif horns.gif cake.gif party.gif Dragon done dead! w00t.gif

 

 

 

 



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



Guru

Status: Offline
Posts: 714
Date:
Permalink  
 

Oh Iris 

I am so very very happy for you. What a journey youve been on and i just want to say Im proud of what super warrior you are!!!! As well as being a lovely compassionate person



__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 



Guru

Status: Offline
Posts: 1169
Date:
Permalink  
 

Ok here it is ...

I'm officially official! Got my one year post Tx and the viral load is virtually nonexistent!!! Dragon done dead!

The lab somehow messed up and did not take my CBC or AFP and the hepatologist said I could stop at the lab on the way out, and I'm like crap...I'm fully done being poked. So I didn't do it. I think the number that really matters is the CLUB ZERO. 

We made arrangements to test once a year even though she said I didn't need to. I'm like heck after all this time I want to be sure every year. So I have an appt. next October. I'll get in those missed tests then.

Thank you everyone for being such good support. It's nice to know one isn't alone in this battle.

many blessings, Iris



__________________

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

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

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



Guru

Status: Offline
Posts: 1169
Date:
Permalink  
 

LoL Jill, it reminds me of the day after I had my baby, I thought my belly would look pretty much back to normal...HA ! Not so much evileye

I just wanted to chime in on my one year anniversary of beginning treatment. Hard to believe a year has passed. So I am around 9 months post Tx and am really having a hard time getting back on my feet so-to-speak. My numb toe are bothersome and my back is really bad, I really wonder if the treatment aggravated an already disintegrating disc disease. Have experienced quite a bit of weakness from my waist down.

Ok, That's all for now I should put a note in Post treatment? BB, Iris



__________________

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

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

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



Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Hi Iris!

Just stopped by and wanted to say congratulations to you!!  biggrin

I hope you start feeling better and less tired soon, and get some answers about your nerve problems. I remember it took quite a few months after SVR until I started getting any energy back, it`s not always the instant fix we think it`s going to be. But clearing the Hep C virus is wonderful and will have many long benefits for your health.

Wishing you all the very best, Iris...  you`re a survivor and a winner!!  winner.gif



-- Edited by Cinnamon Girl on Friday 19th of April 2019 01:48:04 PM

__________________

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.

 

 

Tig


Admin

Status: Offline
Posts: 9282
Date:
Permalink  
 

Hey Iris,

Big WOOT  It never gets old hearing those great test results! 6 years ago and I still enjoy reading it, each and every time. Congratulations, you really worked hard to get rid of your Dragon and your persistence paid off in Zeros!

I do hope you get the help needed and some answers. I know you’ll get to the bottom of it. You’re a strong person and proven Warrior. Thats a winning combination! Keep us informed of your progress. In the meantime, celebrate your SVR24+, that’s game over, Dragon!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 1302
Date:
Permalink  
 

iris, congrats on UND

it could be damage from the virus that just happened to show up now, or our age. i have a few things that i wish would go away too.

plus dealing with other life stuff can affect our health too.

best wishes and i sure do understand that emotionally numb feeling sometimes; here's hoping that our future is bright and better. 

5



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



Guru

Status: Offline
Posts: 1169
Date:
Permalink  
 

Thank you all, Tig, Cheddy, See the Light, Hoodie, 5, Shemp, Observer, Canuck, Lamassu, Jill, Mallani, Scruffy, Tanner for the kindest wishes, I am really overwhelmed. It really been worth it to have folks that understand what's going down. 

Well, I thought I would report my 6 months labs. Just saw the Hepatologist 2 days ago. She reports all labs are normal. Still UND. !!!!!!!! wheeeeeeeeeeee what a relief. 

I asked her about the nerve trouble, she said I've cleared the medicine long ago. Well I just want to know if there is any correlation to my sudden onset of numb toes to the meds, because it did come on in the last two weeks of treatment. She didn't think so.

And I'm tired. Thought all that would turn around... she says maybe something else is going on like my thyroid. Also maybe in the same vein as nerves but I feel flat. Don't know how else to describe it. Not much emotion, not happy, not sad, not anything, nor do I really want to do anything and this is really bothering me. Anyone else feel just, eh?

Blessings to you all!

Iris



__________________

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

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

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



Senior Member

Status: Offline
Posts: 170
Date:
Permalink  
 

Iris, your relief is palpable. Reading this brought tears to my eyes. To see all that has happened to you, and to know you have lived for so long in a place that was full of anxiety and uncertainty, I am rejoicing with you.  



__________________

Gail Tanner

65

Female

Genotype 2

Fibrosis stage: F1-F2 (minimal fibrosis/scarring)

Diagnosis date: 10/30/18

Treatment started: 2/9/19

HCV medication: Epclusa

Viral load: 3,292,271 Iu/ml 

AST: 25 (normal)

ALT: 26 (normal)

ALP: 81

CAP: 226 <10% fat

ANA: 12.8 

No prior HCV treatment.

8/19 (EOT): NO HCV DETECTED!!

Tig


Admin

Status: Offline
Posts: 9282
Date:
Permalink  
 

Hope things are going well for you, Iris. smile



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 500
Date:
Permalink  
 

Congratz Iris

No more dark cloud hanging over you. Hard won well deserved.



__________________

Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!



Guru

Status: Offline
Posts: 3398
Date:
Permalink  
 

Hi Iris

Congrats from me as well. Wonderful to see. XX



__________________

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

Malcolm



Guru

Status: Offline
Posts: 5629
Date:
Permalink  
 

Oh Iris, I`m so happy for you!!  Huge congratulations, you did it!!   biggrinbiggrinbiggrin

What a warrior you`ve been, waiting for treatment for so many years and never giving up hope.  You should be very proud of how far you`ve come! 

Now at last you can move on and start living your life, free from Hep C!!  heart.gif

 



__________________

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.

 

 



Senior Member

Status: Offline
Posts: 193
Date:
Permalink  
 

Congrats on SVR12 Iris very happy for you!



__________________

Male, 67, Dx 1990, GT 2a/2c. Pre-tx VL 11,500,000, ALT 10, AST 18, F3, 12.4 kPa. Rx: 12 weeks Epclusa, SOT 3/8/18, EOT 5/30/18. Week 2 VL 50, ALT 12, AST 21. EOT + 12 weeks: VL not detected, ALT 11, AST 19. EOT + 24 weeks VL not detected, ALT 9, AST 24. 8/15/19 F2 8.8 kPa.



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

They are good karma dragon flies! :)

Related image

Such a wait you had, but how well it turned out. 

I am so glad you are finally free now.

This is a very, very fine day! C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Guru

Status: Offline
Posts: 714
Date:
Permalink  
 

yay! hurray!

Iris,  I am sooooooo happy for you and sooooo proud of the warrior you found in yourself!

congratulations and enjoy your health.



__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 



Senior Member

Status: Offline
Posts: 128
Date:
Permalink  
 

Congratulations Iris,you've won.That antibodies thing makes me a little crazy too.But hey,no virus...I'll take it.



__________________

62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 V/L NOT DETECTED

12 Wk post EOT ALT 11 AST 16 V/L NOT DETECTED  Thank you GOD

Take that stupid dragon

1/2/2020 SVR 12



Guru

Status: Offline
Posts: 1302
Date:
Permalink  
 

party time ! congratulations iris... what a road you traveled to get here

Related image



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0



Senior Member

Status: Offline
Posts: 379
Date:
Permalink  
 

Iris, my sister, Im so happy to hear the wonderful news of your victory!! Way to go brave warrior!!  You have been through soooooo much, physically and emotionally. I feel connected to you spiritually because your strength and courage draw me toward your light

Congrats proud warrior queen!! Im happy for you and proud of you. Way to go



__________________

F, 51, GT3, HCV since 1989, no alcohol since 1999, Fibrosis score F0-1 (.36), VL 216,000, ALT 23, AST 26, Epclusa SOT 7/26/18 EOT 10/18/18. Thank you God. 



Senior Member

Status: Offline
Posts: 227
Date:
Permalink  
 

WHOOEEE Congratulations Iris. party.gifparty.gifparty.gif

Your Magic Beans Have done an amazing Job worship.gif

Enjoy your Hep Free Life. smilesmile.gifsmile.gif

This antibody thing I find to be a bit frustrating, to know that with any basic testing done (lets say with a needle stick etc in surgery) someone else could go through the anguish of thinking they have contracted it from us, until we can prove we don't have it. Could still be a bit harrowing for both us and them. Guess we can't have it all but it does seem a little odd that although we are cured we still carry these darn antibodies.



__________________

66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment Gen 3a Fibroscan 8.7

Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30 .....Oct 16 2018 SVR12 UND



Moderator

Status: Offline
Posts: 795
Date:
Permalink  
 

Yippee! Hooray! WooHoo! Sooo happy for you, Ms. DragonFLY! 

Wow, 40 years!  That's hard to imagine as I din't have to worry so long. Those tears are surely about a big release.  Iris, you're cured! 

Yes, you actually can move on.  40 years have probably produced a lot of habits.  You may take some time to shift outlook, or you might just feel like you shed a lot of dark weight.  I'm eager to hear how it goes moving forward.

The folks here helped me sooo much in getting through, as well.  Much love, indeed.

Iris, how are you going to CELEBRATE? You certainly do deserve it, and it marks that change you are looking for.  It's time for some fun! I'm dancing now.  

Oh yeah, the foot, that makes sense that it could be related to your back and will tell you more about your back pain. 

biggrinconfusebiggrin

Your friend,

Ched

 



-- Edited by Cheddy on Sunday 27th of January 2019 03:58:03 PM

__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 

Tig


Admin

Status: Offline
Posts: 9282
Date:
Permalink  
 

Hi Iris,

WOOHOO!! Congratulations in your Victory! You really took the scenic train to SVRville, but you got there, lol. You fought hard to get to this moment and I’m glad we get to share your joy. I considered this moment a big check off my bucket list, it’s a big one!

You did it!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 1169
Date:
Permalink  
 

Hey there you all!!!

Well I got the final results and they were as we suspected...UNDETECTED !!! WoooooHooooo!!!!!!

So hard to take in, not sure why. I did sit in my car and cry awhile after I left....Is it real? Is it really real? Is it really, really, really real??? 40 whatever years is a long time, I think now about the kids I didn't have for fear of passing this along ?.been a lifetime of worry, now I can just move on? Certainly hope so. The dr. said I will always test positive for antibodies. She also agreed to test me at 6 months and at 1 year. I feel a huge relief with that.      All my other blood work was great, everything was in the normal range!!!!

I do have to follow up with foot dr. who is going to send me for a MRI, he seems to think my numb toes is a pinched nerve in my back. 

I added these other links so if anyone is ever interested in my journey (self included LoL) they can be easily found.

LASTLY...a HUGE thank you to all the folks who were so supportive along the way, I could not have done this without the great words, encouragement and information provided by the fine people of this forum. GRAMERCY!!!!!!!!!

MUCH LOVE, Iris  

 

https://hepcfriends.activeboard.com/t64983526/harvoni-sides-and-beyond/

https://hepcfriends.activeboard.com/t65125439/pain-under-ribs-on-the-right/

https://hepcfriends.activeboard.com/t64938992/my-toes-are-numb/

https://hepcfriends.activeboard.com/t64972238/re-infection/

https://hepcfriends.activeboard.com/t64841401/knife-twisting-pain/

https://hepcfriends.activeboard.com/t64933278/health-dept-registration/

https://hepcfriends.activeboard.com/t64950397/depression-again/



__________________

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

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

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



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Iris,

So glad you have had your labs drawn.

After your mid-Jan appointment you will have that wonderful positive reinforcement of seeing that UND again and knowing you own your SVR12.

Are you continuing to improve from the ribline/back thing? I hope so. C. 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Senior Member

Status: Offline
Posts: 128
Date:
Permalink  
 

Well done Iris.Waiting is very hard indeed.I have to wait until mid March for my EOT+12 bloodwork.I'm confident we have won.



__________________

62 yo male GT 1b/2 ALT 60 AST 51 V/L 985,000 Fibro A2 F 3/4 began 12 wks Mavyret 9/13/2018

6 wk labs ALT 12 AST 18 V/L NOT DETECTED EOT 12/05/2018 V/L NOT DETECTED

12 Wk post EOT ALT 11 AST 16 V/L NOT DETECTED  Thank you GOD

Take that stupid dragon

1/2/2020 SVR 12

Tig


Admin

Status: Offline
Posts: 9282
Date:
Permalink  
 

Iris,

Confidence is the word of the day!



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Moderator

Status: Offline
Posts: 795
Date:
Permalink  
 

Argh!  The waiting part is so hard!  



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 



Guru

Status: Offline
Posts: 1169
Date:
Permalink  
 

Yea! Thank you sooooooo much! Now to wait.  My appt is mid January. Yea ...a long haul indeed

BB, Iris



__________________

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

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

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



Moderator

Status: Offline
Posts: 795
Date:
Permalink  
 

Iris,

I am excited to hear that you got your 3 mo after EOT blood work done today!  We'll be waiting to hear (what I am sure we all know will be good news ) ASAP. 

What a long haul this has been...since 1978.  The current year has been challenging in itself .  I have no doubt you will be feeling better in 2019. 

Gotta go polish those dancing shoes. 

All the best!

Cheddy



__________________

GT2a, VL 681,500, Less than F1, Treatment Naive

12 wks Sovaldi/Ribavirin, SOT 2/25/16, EOT 5/17/16

UND at 2,4,8 and 12 wks during treatment but ribavirin crazy.

ALT/AST normal EOT

SVR12 8/13/2016!!!!!!!!!  I WON!!

EOT 6 Months 11/12/2016  CURED

 

Tig


Admin

Status: Offline
Posts: 9282
Date:
Permalink  
 

Hi Iris,

I missed this post by you, sorry. You have several threads going right now. The most recent in post treatment is the last I responded to. Yes, once treatment is completed, it’s easiest to keep a thread active in Post Tx to stay current. It’s easy to get spread out when there are multiple personal threads active.

It does take some time to get completely back on track. The medication is out of your system in a week, tops, unless you’re on Ribavirin. That takes 6 months to clear and took me a complete year to get over it’s effects. Nasty stuff. I think you will notice steady improvements, hopefully each week. If you have some existing complications from HCV, those can take longer. Things like fibrosis, cirrhosis or joint damage can take far longer. The good thing is, stopping the disease will prevent further progression and resulting complications. 



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 1169
Date:
Permalink  
 

LoL! Well I certainly didn't feel "high" but are you saying it will be about 6 weeks or more to be back in sync with my body? Because it was about that long after I started taking the pill and that was like a high..if you want to call it that, because I could feel myself coming on to the pill about 15 to 45 minutes after taking it. It was like a wash of slug energy would come over me, and then I would be a lead weight the rest of the day.
I suppose I should move this to post treatment, eh?
Thanks, Iris

__________________

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

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

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

Tig


Admin

Status: Offline
Posts: 9282
Date:
Permalink  
 

There is a similar period of adjustment to ending treatment, as there was starting it. Like Canuck mentioned, the “Harvoni High” is real, it seems to be mentioned with most treatments. I even had it, not often, but periods of it. As your metabolism readjusts to being normal and healthy again, you’ll pick up.

In the meantime, rest, relax and recover...  



__________________

Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Guru

Status: Offline
Posts: 3249
Date:
Permalink  
 

Some say there is such a thing as a Harvoni high - but i don't know. I think it could just be like .... "whew"! Go with it. Listen to your body. Needing 40 (or 400) winks, feeling deflated, tired, different ... that does not seem so strange to me to be experiencing, being all you have been going through - I am sorta glad you decided to forgo the moon watch - conserve, recoup, treat yourself well, you have finished the pills but you are still in repair mode. Keep treating the goddess in her temple very well, feed her good and don't forget to water her either. Rest. wink C.  



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

(SEE UPDATES IN BIO)



Guru

Status: Offline
Posts: 1169
Date:
Permalink  
 

Thank you so much Tig, 5, Hoodie, See the light, Canuk. Getting off the train has really left me with mixed feelings. I had been experiencing a surge of energy in the last few weeks,  but today, my second day pill free. ..I'm exhausted, like all day. I had my EOT blood draw this morning, then had a consult with the dermatologist  (we have been burning stuff off and looks like he has to do it some more), anyway when I got back from that I have been a bump on the couch. I've nodded off about 15 times, and refrained from a moon viewing hike tonight because I'm so whipped. What the heck is happening, is there withdraw symptoms at all?

Iris



__________________

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

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

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



Senior Member

Status: Offline
Posts: 227
Date:
Permalink  
 

Wow Iris, EOT is here. It's a funny time isnt it...... The clock, pill box and little magic bean are no longer the most important things in your life.

Roll on the rest of your life.....An amazing Hep Free life lies ahead for you. xd.gif



__________________

66/F Contracted Early 80's First Diagnosed Early 2000's 2017 re diagnosis and referral for treatment Gen 3a Fibroscan 8.7

Epclusa 12 weeks commenced 1 May 2018 ALT 72 AST 67

28 May 2018 4 weeks ALT 16 AST 23 ...... 23 July 2018 EOT ALT 23 AST 30 .....Oct 16 2018 SVR12 UND



Guru

Status: Offline
Posts: 1302
Date:
Permalink  
 

whoohoo iris! enjoy your freedom from hepC and pill time



__________________

Gt:1a-36yrs .Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on 3.6.18:. A1 activity.  f3@60: fibrosur bloodtst. AFP=norm. enz=mostly norm.VL=3.9 million.sot=5.1.18>Harvoni>[8wks]: 4WEEKS=UND. Eot 6/25=L.J*13weeks=UND * 6 m =UND: CLUB ZERO.1yr.=0

1 2 3 4  >  Last»  | Page of 4  sorted by
 
Quick Reply

Please log in to post quick replies.

Legal Disclaimer:

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