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Post Info TOPIC: New to Mavyret


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Congrats Sticker.... awesome news!  You are a dragon slayer..... dont you just love those magic beans!



__________________

66 yr old female; polio survivor; hbv that wasnt treated but cleared; chronic hcv gt1a; diagnosed 2018 but likely infected during surgery as child; Metavir score F2-F3; mild to mod fibrosis; RNA 3,951,412; AST 40; ALT 47

Tig


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Good job, Bro! It’s a great day when you realize the Dragon has been decimated. I’m glad you had the ultrasound and discovered the blood marker testing was inaccurate. I’m not a big fan of the Fibrosure test. There are too many instances of it being wrong.

Enjoy your new found health. Consider it a new lease on life! Congratulations!!

Your new badge  

803B95DB-955B-42C3-97B2-75195CC7728F.jpeg

 



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Tig

68yo 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!

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Guru

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Thats fantastic news sticker

congrats on both 

What a nice Christmas present for you....a healthier future

cheers

 



__________________

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

4 years.... successful dragon slayer 



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Congratulations Sticker way to go!



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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.



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congratulations sticker!!



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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



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That's the ticket, Sticker!

You've weathered a storm and slain an aged dragon. Good work. Carry on with all those good health habits and kind regards. I'm happy for you.

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

 



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Its official, SVR 12 has been achieved! I received my test results today. AST and ALT in normal range, HCV RNA non-detectable! I have been away from the forum for a bit, just living life as usual, nothing new to report until now. I am happy and relieved! I was given a Fibroscan during this appointment as well, mild damage indicated F1 fibrosis. This was the first Fibroscan I have received and it was a better result for me than previous testing indicated. My Fibrotest (blood) indicated F3 advanced fibrosis but a sonogram indicated that the liver looked (clear). My doc is satisfied that the F1 designation is most accurate. 



-- Edited by Sticker on Thursday 19th of December 2019 12:12:50 PM

__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Wow sticker, that must have been frightening. Im glad you and yours (and your house) are all okay.

how are you feeling?  



__________________

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

4 years.... successful dragon slayer 

Tig


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Incredible storms in DFW! That has to turn your world upside down. The calls start coming in  the hundreds. Thank all First Responders for what they do, we can’t say it enough!

Thanks for checking in



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Tig

68yo 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!

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sticker, i'm glad you made it ok



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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



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Man, we got slammed with tornados last night. We were lucky at my house, no damage. Weather has to always be extreme in Texas. Sounds like 3 people were hospitalized, no deaths thankfully. Hope that all of you are well and healthy!



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Sticker,  40 years is a long time but I bet a ton that your liver will improve. Look how good your ALT and AST labs look now.  Just keep up those healthy habits and great attitude. And keep laughing! It's the best.



__________________

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

 



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Thanks lamassu. I will get that straight with the doc when I go for my 12 week fibroscan. It will be nice to know if some of the damage from carrying the virus for 40+ years can be undone to an extent. It is good to be undetectable!



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Congrats Sticker! Try to talk your doctor into repeating the FibroScan after a year has passed, you will probably have liver repair and a lower kPa.



__________________

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.



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Congratulations Sticker!! I'm taking a long draw off my large jug of water in tribute...

Wow, I get the always sore and in recovery from my workout to stay strong. Best to you and welcome to Club Zero!

 

ps



__________________

 

New: Hepatomegaly 07/30/2019, AST 29 & ALT 15

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND.

Club Zero Member.

 



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Good job, my friend!  Chug A Lug!!!



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66 yr old female; polio survivor; hbv that wasnt treated but cleared; chronic hcv gt1a; diagnosed 2018 but likely infected during surgery as child; Metavir score F2-F3; mild to mod fibrosis; RNA 3,951,412; AST 40; ALT 47



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Thanks all. Its a bit surreal, being undetectable. I will get accustomed to it Im sure. I have no words of wisdom, no reflection on living life free from HepC, just an underlying sense of relief. I will keep you posted when the results of my fibroscan and 12 week labs return. Meantime, let me tip back this tall glass of cold water!!



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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i'm so happy to know that you already know you are UND!

Luckily, I was able to ascertain my VL and knew that I was UND. 



__________________

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



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Hey there!biggrin 

Sorry to be absent, my you have been through quite a lot. I'd be the crazy screaming patient...Don't these friggen Dr's realize how important this is? WTF?disbelief? You did well considering all the crap.

and dang I'm late to the party I apologize once again, but here's to your fantastic results

hip hip huzzah!, Hip Hip Huzzah!! HIP HIP HUZZAH!!!   

this kind of news never gets old, very happy for you

blessings, Iris



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

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

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



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Thanks Cheddy! I have the privilege of doing PT while on duty at the fire station, its mandatory. Nobody minds though, its good for us and we push one another. Mostly CrossFit type workouts, soooo intense! The good news is: Im 52 y/o but feel like Im 95. Always sore, always recovering.

__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Sorry about the lab delays, Sticker. The rest of this is such good news. I really like that you are keeping yourself fit and eating well. I try to do the same and it works wonders in many ways.

Keep up the good work!!!



__________________

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

 



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Thank you Canuck! I read the links you provided in addition to some internet research concerning fibrotests and fibroscans. My physician, for whatever reason, does not seem to believe that I need more frequent testing. I recall him saying during an earlier visit that since I contracted the virus as a child there may be less damage to the liver. The childs body copes better and does not fight the virus so hard therefore leading to less damage, in essence, coexistence. I dont know, maybe thats nonsense, something to said to make me feel better somehow. 

Tig, I appreciate your input and will follow your advice. Eating healthy and exercising is an effort that will hopefully extend my days as a functioning adult. The exercise in particular has a positive effect on my mental well being, just makes the brain feel better. The hydration is easy, this dang heat demands it!

Missus B, looking forward to your lab results too! This next one is gonna be THE ONE!



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Unreal Sticker, that they STILL didn't have all the tests results for you after such a delay! Gr eh. But good you made sure you previously found out the most important ones! Your lovely UND and the nice ALT/AST!  : )

You should get good long term following now that you are cured this time. Repeat imagings, bloods and fibroscans will be valuable going forward, just as the imagings, bloods and fibroscans are for initial assessments. Repeated comparisons, over time, with multiple or all means is good. Maximum info to draw conclusions from. Fibroscans are a handy, easy small valuable tool to add to your following kit. Wonder why he did not get you one before treatment. No never mind - that additional fibroscan info will come now, and you will not have to depend alone on the imaging and blood info to try to assess better where your liver is at and to follow any improvements to come now that you are cured. With some of your liver functions tests improved (those "lower" numbers) that may bring the formula that makes up the fibrotest down from F3. Fibroscans are a dif animal if you are not already familiar with them, basically going on how "firm" your liver is, it's "stiffness").

I get followed with all of the blood, U/S and fibroscan assessment methods very frequently, same tests repeated over time.

Links to some of the info section:

 

 Fibro-sure (also called Fibro-test), the Acti-test, and the Apri-test

About Fibroscans - or VCTE - (Vibration Controlled Transient Elastrography) 

 

 

 

 



__________________

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)

Tig


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Hey Sticker,

I would spend much time worrying about SVR. I’m gonna go out on a strong limb and just say, It. Is. Done...

I’m no fan of the Fibrotest. Known inaccuracies, but close enough for some. Especially the insurance companies. A good sonographer with the latest probe will provide much greater results. Beats a biopsy every time!

Keep up the fight! This is the time to treat yourself right. Sometimes you just have to remind a friend, know what I mean? Hydration, rest and nutrition. Something is better than nothing, but try to keep it healthy. 



__________________

Tig

68yo 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!

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Great job!!!  Looking forward to an UND result when I have labs drawn Friday!



__________________

66 yr old female; polio survivor; hbv that wasnt treated but cleared; chronic hcv gt1a; diagnosed 2018 but likely infected during surgery as child; Metavir score F2-F3; mild to mod fibrosis; RNA 3,951,412; AST 40; ALT 47



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I had a visit with my doctors office today. They STILL did not have my lab results From 8/22! Luckily, I was able to ascertain my VL and knew that I was UND. There will be further labs scheduled three months from now in addition to a fibroscan to be done in their office in 12 wks. 

I sincerely hope that the fibroscan is conclusive to identify liver damage. I have received conflicting results relative to liver damage. My fibrotest returned as F3, but a sonogram done prior to treatment did not show ANY damage. The doctor indicated that these two things dont go together so now we do the fibroscan. I havent had one of those so that will be a new experience. We shall see. Hoping for an SVR 12 in December!



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



Guru

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Good for you Sticker!, to call the lab yourself and to find out you are UND  biggrin, and ...  https://www.youtube.com/watch?v=Wz_DNrKVrQ8

Huge congrats on your new status!  : )  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)



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Me, too.

 



__________________

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

 



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Sticker, 

i sure do hope you will continue to bring your caring and compassion to the forum after you are finished with your dragon slaying. smile

Although the treatments are now virtually symptom-free (with proper hydration ) , we are a band of warriors, a community of dragon slayers and the companionship this forum offers will hopefully continue to help others until maybe one day HCV will be no more.



__________________

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

4 years.... successful dragon slayer 



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It's just incredible, isn't it? That went so quickly compared to your earlier attempts.  It is a pleasure to behold.

 



__________________

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

 



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Cheddy, I have six days to go! My visit on 9/18 may be the last, I will be done with the Mavyret and will get future lab schedule squared away. 

You folks have been the absolute best, this forum has been a big comfort to me. I plan to stick around for a while. 

My humble thanks, gratefully offered to all of you, are insufficient. I hope that I can offer a comforting word to others seeking solace and support in this magnificent forum. 



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Thanks guys! I snuck up on him and punched him in the head, that old dragon is done for!



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Hey Sticker, I heard you beat a dragon to death! Nice work brother.



__________________

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



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Congratulations Sticker!

 

Fabulous news! Hoorah!!

ps



__________________

 

New: Hepatomegaly 07/30/2019, AST 29 & ALT 15

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND.

Club Zero Member.

 

Tig


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Congratulations, Michael! That’s absolutely the news we can all wrap our like minds around. Every person here remembers what that first undetected report felt like. It was glorious!

Your description of the doctor’s office doesn’t fail to remind us of many similar stories, too. They need to sit them all down and remind them of the importance of proper communication. It may not mean much to (some) of them, but it’s not up to them to decide. If they can’t coordinate care and concern together, they need to go back to Nursing 101 and start at chapter 1.

All of that aside, WOOHOO!!  

C509B761-0889-43C1-8DB8-4B1A199BED1D.jpeg



__________________

Tig

68yo 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!

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so awesome sticker , good idea to get the online results



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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



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So very glad you called the lab and that you got that fantastic wonderful result... UND

 

 



__________________

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

4 years.... successful dragon slayer 



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YES, YES, YES!! That's what we're looking for, Sticker!  Despite the neglect, you must be over the moon.  Is the EOT? 

 



__________________

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

 



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So happy for you Sticker!  Dont you just love the word UNDETECTABLE??  Waiting on RNA results and hope I get UND too!  So happy for you



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66 yr old female; polio survivor; hbv that wasnt treated but cleared; chronic hcv gt1a; diagnosed 2018 but likely infected during surgery as child; Metavir score F2-F3; mild to mod fibrosis; RNA 3,951,412; AST 40; ALT 47



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Also, thank you all for your understanding and advice. I have an appointment with the PA on Sept. 19th where I can voice my displeasure in clear terms. There may be an EOT appointment with the Dr afterwards. I will let him know that his staff is, at best, inattentive and at worst, willfully callous and negligent. The doc could be entirely unaware of his staffs behavior, although that isnt an excuse. I will thank him for his expertise and for the Mavyret prescription then I will discharge myself from his care.



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Finally! I have seen my HCV RNA, its undetectable!!! That is some welcome news!smile

I really wanted to keep the exchange of information through my doctors office but ultimately called the lab. I was directed to open an online account where I could view ALL of my lab results. (I feel stupid for not having done this in the first place). I did contact the doctors office again to request a conversation with the nurse. She never bothered to call me back. I will give them this, they are remarkably consistent. Thats just gonna have to be water under the bridge at this point. 

Im flipping undetectable man! Best labs Ive seen since 1992!

 



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Oh Sticker -- this is not right...well the AST/ALT are right, excellent in fact..but come on Doc, lab, nurses, staff...I'm with Canuck and MissusB..speed dial and a walk in are warranted for this bad behavior. 

Sorry this has happened to you and vent away all you need to here..customer service is non-existent here..and I suspect the doctor may not even know about it. I want you to get those lab results and we are all waiting to know as well. 

Sending good thoughts your way.

ps



__________________

 

New: Hepatomegaly 07/30/2019, AST 29 & ALT 15

Female,1a,F2 mod fibrosis,HCV 06/2017,SOT 08/04/2017, Harvoni

HCV VL 414,000, AST 54, ALT 74.  4 weeks AST 34 and ALT 31, SVR, Jan 2018. 

12 week EOT, AST 20 & ALT 23 and still VL UND.

Club Zero Member.

 



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Maybe you should just walk right into your Docs office and ask to see him!  Maybe the receptionist didnt give the nurse your messages or maybe the office/lab lost your blood specimen.  Having worked in healthcare my entire life, it makes me furious to know there are providers that treat a patient the way you have been treated.   Reading your post makes me even more thankful for the incredible Doc overseeing my Hep C!



__________________

66 yr old female; polio survivor; hbv that wasnt treated but cleared; chronic hcv gt1a; diagnosed 2018 but likely infected during surgery as child; Metavir score F2-F3; mild to mod fibrosis; RNA 3,951,412; AST 40; ALT 47



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Some of us have also known these feelings that you are being put through - well! Some of us have gone through what you are having to endure. Being kept waiting like this is well beyond just rude/painful. It is a horrid thing! It is unforgivable, extremely hard to take, damaging. They never seem to "get it", "get that", how this affects us, when this happens.

I know there is no comfort in already knowing that the results WILL come and you are going to end up with the right outcome, this time, but that is no consolation now, you need to see the results - WE (here) ALL get it (for sure) - they have no idea what we can truly go through as a result of their mistakes, their ignorance or just because of their sheer callousness.

On Monday maybe start using speed dial - get all the lab phone numbers, all the extensions of everyone in your doc office, light a fire under everyones chair until they look for, locate and find the results for you. On a number of occasions I had to get help chasing labs down - once, i resorted to contrive to "peer to peer-pressure" phone-call tactics - enlisting my GP's office (for example) to help me hurrass/hurry/pressure all and any of the parties who were responsible to delivering the lab results. It worked well for me (that one time), one doc's office phoning the other doc's office demanding they hurry up, what's the hold up, as they having been waiting!, their fingers drumming on desk in background - the extra pressure (from the GP's office) worked, we got the "missing" lab quite quick after that!

I know you have been trying, but all you can do is to keep trying. As hard as it is and as frustrating as it is, you will feel better for knowing you kept trying. Do anything you can think of to get them to cough up that lab. I hope it "just shows up" first thing Mon AM.  Hang in there. 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)



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What is truly annoying is that the disregard of customer service is so common. We have all experienced this, why does it seem to be acceptable? I suppose that I just dont really understand how the patient isnt also the customer. In my line of work we operate an MICU ambulance in addition to providing fire response. We treat patients medically and are attentive to their immediate needs as a customer. We phone family members, secure their homes and take them to their desired hospital regardless of how far it is from our jurisdiction. A patient is much more than a medical case, they are a person, with myriad needs. I am near the end of treatment so I dont wish to be discharged from this doctors care, I want to finish out with the same physician. I will voice my issues clearly at my next appointment. Stepping down from soapbox now, thank you for listening.

__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 



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Grrrrrrrrrrrrrrrr

that is soooo annoying for you disbelief  

we certainly can all empathize with your frustration and are glad you stood up to those twits.

They have no idea how important it is for you to get those results asap... 

 vent anytime you need to friend ...

 



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

4 years.... successful dragon slayer 



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That's bull****. I understand your frustration.  It's not easy to patient for these results, especially after all the time you've waited (years).  I'm glad you are staying on it.  Hope they didn't lose the test!!!

 



__________________

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

 



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sticker i'm so sorry you are going thru this while on tx cry

my liver docs office was difficult too, and they have a patient portal. they will return messages but 

but often with the wrong info.

good idea to let the dr. know how you feel. 



__________________

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

Tig


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That’s so completely irritating! Once or twice on rare occasions is excusable, but not with complete disregard. Our results are extremely important, to us and our families. Some people just don’t get it. Stay on em Sticker. Anytime you want to vent, feel free!



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Tig

68yo 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!

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Time to vent! I have been waiting for my HCV RNA that was drawn back on Aug. 22nd. It is exceedingly difficult to get my doctors office to respond to phone calls and messages. Twice I have left a message for the nurse to call me, she hasnt. Additionally, they were supposed to contact me to schedule a visit for the 5th week of treatment, they didnt. I havent rested on my laurels, I have done all I can to be a squeaky wheel. Finally reached their office today to inquire why I seem to be slipping through the cracks. I wasnt nice, not abusive, but definitely perturbed! This office uses MyChart (app) to enhance patient communication and share information, I have been blowing it up. They dont seem to care. I am fully compliant with medical regime and have never been late in getting labs or showing for appointments. They are not holding up their end of the bargain and I shall discuss this with the doctor at my next appointment. Whew, that felt better!

I will post again when that VL shows up.



__________________

52 y/o male, Genotype 1B, F3, Dx - 1992, likely contracted virus 1977, Current Tx - 8 weeks Mavyret 07/23/2019. Tx - 1st time, Rebetron 6/2000-6/2001, 2nd time, Pegasys 11/2002-4/2003. VL - 636,000 AST - 49, ALT - 77

UND - 08/22/19!!!

SVR 12 - 12/17/2019, AST - 17, ALT - 14

 

 

 

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