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Post Info TOPIC: Vote NO on Hep C


Guru

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RE: Vote NO on Hep C
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Tanner,

Approved and being ready to go is good, (I know) not as good as actually having the drugs in hand, or putting that first pill past the lips and down the gullet, but still ... knowing the drugs are coming is relieving, just to know that, for sure ... "help is on the way"!

Your epclusa will be arriving by snail-mail eh? I bet you are a better, more patient "waiter" than i was. To kill time, while we are waiting (if you have not read this old thread yet) here is a thing about waiting. Waiting, waiting, waiting

It won't be much longer now, and you'll be starting off on your cure. C.



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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

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awesome tanner !! you did it.

i use a laptop.

and yea   to the newest group of treatment troopers



__________________

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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



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Yay Tanner !  I know what that wait is like, I think I chewed all my nails off waiting for those pills to come.  Wishing the BEST for all of us starting on this journey. 



__________________

Age 62

Diagnosed 2007

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L

GGT 76 U/L

FIBRO BUN 9 mg/dL

FIBRO PT INDEX 103 %

FIBRO METAVIR CLASS F2

INFLA PT SCORE 0.73

INFLA METAVIR CLASS A1/A2

 



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5-1-18 wrote:

tanner, i just copy and paste. the smaller ones that don't move too much are the best :D 


 Like this? For all those starting meds shortly.

tenor.gif



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

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Posts: 47
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Thanks 5-1

 



-- Edited by tanner on Tuesday 15th of January 2019 11:40:15 AM

__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

Status: Online
Posts: 47
Date:
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Thanks 5-1. Are you copying on a mobile device? I tried; but the gif app doesn't come up like it does when texting.



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Guru

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Posts: 793
Date:
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tanner, i just copy and paste. the smaller ones that don't move too much are the best :D 



__________________

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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



Member

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Thanks, Canuck! It hasn't arrived yet but I'm being patient. (They told me it was being mailed.)



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

Status: Online
Posts: 47
Date:
Permalink  
 

Thanks 5-1-18! How did you get a gif to work on here?



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Guru

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Posts: 793
Date:
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elmogif1.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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



Member

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Posts: 47
Date:
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Tig, that works!



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Guru

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Posts: 3033
Date:
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Yay Tanner!

O     O

l

         U         



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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


Admin

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That's fantastic! Nothing like a quick approval to send the Dragon into a complete panic. Bwahahaha! You're going down, Dragon. Let the slaying begin...

How bout this one?

264.png



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Member

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w00t.gif  This one is better :)

 



__________________

age 64
gender F
genotype 2
fibrosis stage unknown but bloodwork shows no liver damage
HCV diagnosis date Oct/18
Waiting for appointment with liver specialist Jan. 31/19
HCV medication(s) none yet but probably Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Member

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Posts: 47
Date:
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Hahaha - same one I posted! Thanks, Annie!



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

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Posts: 19
Date:
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biggrin  How's this?  Congratulations!!!



__________________

age 64
gender F
genotype 2
fibrosis stage unknown but bloodwork shows no liver damage
HCV diagnosis date Oct/18
Waiting for appointment with liver specialist Jan. 31/19
HCV medication(s) none yet but probably Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Member

Status: Online
Posts: 47
Date:
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Epclusa approved yesterday!!! Where's the emoji for jumping up and down? biggrinbiggrinbiggrin



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

Status: Online
Posts: 47
Date:
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Canuck, thanks for that encouragement.  Yes, I am a survivor but so are all of you. When you cheat death, you really are filled with overwhelming joy and gratitude for life itself. I cannot imagine your in-laws pain. Yes, AVMs are congenital. It's just so rare that it would happen to 2 in your family (familial). And yes, that's probably due to some weird genetic factor. You sure know a lot about this. I belonged to an AVM support group (like this one on Hep C) the first year or two after it happened. Back then, people were opting for radiation and/or glue embolizations (to block it) before theirs might rupture instead of an out and out craniotomy. It was their symptoms (headaches, seizures) that caused them to discover they had it. We lost a few in that group. I would choose the surgery any day. 

Yes, the liver specialist said they never look at that ANA number in isolation. It's all in conjunction with the Hep C so I expect that to go the way of the dinosaur. 

Thanks again!



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Guru

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Posts: 3033
Date:
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Tanner,

I made a couple posts to you (here and there), i think some over where you started out, over on Annie thread and then elsewhere i think, but I will drag a snippet over to here to discuss this particular bit further with you before it gets buried - just because of importance of what you have been through, a survivor of a ruptured AVM! Any kind of brain bleed, whether it be the regular cerebral vascular "accident" or one of these rupturing mass types, all kinds of brain bleeds can be critical life-threatening (if not fatal) events, often they are life-changing even when survivable, you have certainly beaten the odds in many ways, in being the unlucky recipient of having owned one of these undiagnosed masses in the first place, they are seen and are well-documented "thing", but are not that common in the population, and less common for people to survive a rupture of same! - you certainly dodged a bullet there - i can see from some of the comments you have shared you have suffered from the aftermath of the bleed, but it was amazing and lucky you survived. You were lucky to get to the doc who saved you.

(moved comment) ... " about your family members who died of an AVM. You probably know that it is NOT heredity. The vessels just do not form correctly in the fetus. It's a terrible "coincidence" that both of them died of the same thing " ...

I agree that (technically) until proven otherwise, AVM's are not "hereditary", in my in-laws case, the docs told the rest of that family to get tested in an abundance of caution, and to make the rest of them feel better (I think) - in AVM's it is not really well-known/well-defined (the causation) - exactly WHY/HOW/or WHEN these AVM's form or start to form and what the exact cause of them can be blamed on, some reasons may be more likely than others. It IS semantics really, but if they cannot be deemed "hereditary" per say, they are thought "congenital" (might be seen at birth, forming at some unknown point in gestation, perhaps not found for very long times), AVM's can and have been considered "familial" too (familial weirdness like this has been documented in limited cases, where siblings have AVM's and/or parents and offspring have AVMs, so, they cannot rule it out as "being familial" it seems), and, they maintain to stress possible unknown "genetic factors" as potential causation. 

As hard as it has been for you, i am so glad you survived your AVM, that your family did not lose you, my in-laws were just so devastated with losing two of theirs to the same thing in such short order. 

You are meant to be a survivor, you are meant for greater things, this next step, getting rid of the hepc will be far easier.

Oh BTW - you had been speaking with Observer about her being in BC, and asked where in Canada I was from? - I am like Obs, in BC, but I am many hours away from Vancouver I am afraid.

I note your "not high" ALT/AST blood levels, that's good, we'll take anything good or better for now! Regarding ANA alterations and blips, we see that happen sometimes, and, we have also seen these aberrant blood tests resolve, all on their own, after cure! Wait and see. It will be SO much better for you to not be packing this virus anymore. I hope things get approved soon for you, you will feel better about things once you get started. C.

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 63 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)



Member

Status: Online
Posts: 47
Date:
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Thanks, Tig!



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

Status: Online
Posts: 47
Date:
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Thanks Ashenvale!



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.

Tig


Admin

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Posts: 8667
Date:
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Congrats on the upcoming approval, Tanner! Epclusa is a fabulous Dragon killer! 

 



__________________

Tig

62 yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 1-4 years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

Signature Line Set Up/Abbreviations   Payment Assistance

 



Member

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Tanner, fingers crossed, really hope they approve it so you can start the treatment soon!

__________________

58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).



Member

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Observer, I can't believe you had a tumor on top of all this. I really hope that the fibrosis will reverse. My doc has now requested epclusa. I have a feeling this one will be approved. Just waiting....



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Senior Member

Status: Offline
Posts: 446
Date:
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Tanner,

As 5 said, as soon as the treatment stops hcvs evil replication, the liver can start to heal...

I think there was one member who was at cirrhosis and 5 years after his UND I believe they started to see a regression of his fibrosis.

I had a small setback in my recovery, I felt better but not BETTER. Then a year after my treatment, my AFP was continuing to be elevated a titch, and it turned out, I had a tumour. It was zapped and my recovery became really life altering (in a good way)smile So although Im 3 years clear of HCV , I feel like Ive only really got 2 years of real healing. 

So... I still show cirrhosis on MRIs but Im super hopeful that with healthy diet and exercise my fibrosis will eventually reverse.

 

I sure hope your insurance company okays your treatment soon.

 



__________________

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

3 years...post tx... successful dragon slayer 



Guru

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Posts: 793
Date:
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you are welcome tanner



__________________

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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



Member

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Posts: 47
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Thanks, 5-1-18!



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Guru

Status: Offline
Posts: 793
Date:
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tanner, yes the liver gets busy trying to repair itself and does have a chance to do that to some degree once the HCV is gone



__________________

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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



Member

Status: Online
Posts: 47
Date:
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Hi Observer. I'm so glad you got rid of that MONSTER! Can't believe you were at stage 4. That does bring up a question. Once the Hep C has been eradicated, do new liver cells begin to grow? I'm probably not asking that correctly but I'm wondering once the virus is gone, can the liver heal itself?

Your days sound lovely; peaceful and calm. As I just responded to Annie, I don't live permanently in Canada, just the summer. After the treatment I received there (air-flighting me to Toronto for a seizure that put me in a comas), I sure wish I did.

My daughter-in-law took that shot around 5:30 AM from the dock a few summers back. 

Your relief is palpable. I hope you continue to thrive.  

 



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

Status: Online
Posts: 47
Date:
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Hi Annie, thanks for the link. It spoke volumes about Canadian healthcare:

"....the disease should be eradicated in Canada in the next 10 to 15 years. The drugs have a 98 per cent cure rate, he said. Thats really high. While there have been drugs available for those with hepatitis C over the last two years, a 40 per cent group with subtypes of the disease did not have any available treatment. Now everyone who walks in the door with hepatitis C has a paid-for treatment. The new drugs fill the gap and include one drug Epclusa that can be used for all genotypes...covers all six types of hepatitis C...this one takes the thinking out of it.

Alas, I do not live permanently in Canada; only there in the summer. But I have experienced the ease, care and low cost personally when I had to be air-flighted to Toronto from Muskoka several years back for a massive seizure that put me in a coma. 

 



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

Status: Offline
Posts: 19
Date:
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Hi Tanner.

I'm from Chatham, Ontario, down in the banana belt :)  I've been to Muskoka a few times...such a beautiful place.

According to this article from the London Free Press, the drugs should be covered.  I'm not to that point yet but will be asking.  Dr. Marotta is the specialist I will be seeing Jan. 31.

https://lfpress.com/2017/03/07/london-liver-specialist-urges-people-to-get-tested-treated-cured-and-move-on-with-their-lives-because-new-drugs-have-a-98-per-cent-cure-rate/wcm/7f4f6226-f26a-259c-9c52-290eb956bd53?fb_comment_id=1722897001156893_1897533680359890

 



__________________

age 64
gender F
genotype 2
fibrosis stage unknown but bloodwork shows no liver damage
HCV diagnosis date Oct/18
Waiting for appointment with liver specialist Jan. 31/19
HCV medication(s) none yet but probably Epclusa
HCV lab results (viral load 2,950,000, AST unknown, ALT 10
No prior treatment



Senior Member

Status: Offline
Posts: 446
Date:
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Hi Tanner, 

I was offered interferon when my fibrosis was at level 2, but the universe conspired to keep me from that treatment, when my youngest begged me to try the newlay developed DAAs, my fibrosis had progressed to level 4..cirrhosis cry.  

I cant express how much better I feel now that Im rid of that monster... I do still have a number of issues as a result of that long term cell altering...(my immune system being the most affected) but they are all manageable compared to before and to not be exhausted all the time is amazing! 

I live in BC...in Delta. I live only 2 kilometres from the beach/wetland bird reserves and I walk my dog there and photograph eagles,crows, herons.....for 2 hours everyday. Sure couldnt do that pre-treatment . 

I hope Ontarios medical system will pay for your treatment soon.

(your photo is gorgeous!...the colours )



__________________

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

3 years...post tx... successful dragon slayer 



Member

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Cheddy - very very helpful post and helpful link to definitions and acronyms. I can now fill in most of the numbers in my signature. I went through all my labs but I don't know what other numbers to list.  (under your etc.) The only one off the charts is the ANA (autoimmune antibody)



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Moderator

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Posts: 544
Date:
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Tanner Girl, 

Here is some of the information you may need.  We'll try to clarify as you learn more about your labs and all.  You can also use the Search above for further information. There's one called Forum abbreviations.


Good luck with your insurance.  Relax the best you can, and enjoy that beautiful view.

How To Create Your Signature / Forum Abbreviation Definitions
Permalink Closed



 ALL members please do this. It will be helpful for everyone if you create a signature with HCV related information specific to you so that it can be quickly viewed by other members at the bottom of each of your posts. This promotes more accurate and prompt reply's to your post by other members. In many cases this eliminates the need for that member to look through your older post to find your information which can be very time consuming and unnecessary. If you need help with this then Tig, myself, or another moderator will be glad to help you. 

To create a signature:
(#1) - Click on 'User Details' circled in 'Red' (shown in the image below)
(#2) - Click 'Signature' circled in 'Green'
(#3) - Enter your information in the 'Subject Body' area circled in 'Blue'
(#4) - Click on 'Save Changes' circled in 'Black'

You can view other members signatures to get an idea of what information to include such as:

age (optional)
gender (optional)
genotype
fibrosis stage (if known)
HCV diagnosis date
treatment start / end date
HCV medication(s)
HCV lab results (viral load, AST, ALT, etc)
any prior HCV treatment including date(s) and medications, etc.
SVR date (if applicable).

Some of the abbreviations used in the signatures are unique to this forum so to familiarize yourself with a list of them click the following link: Forum abbreviations


Signature image updated3.jpg



____


__________________

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

 



Member

Status: Online
Posts: 47
Date:
Permalink  
 

Hi Observer. Thanks. Sounds like you had a very frustrating and scary time. None of my family has been tested but it's next on the list. Regarding approval: my doc says their office has not received a denial even though I have, so they are calling the insurance company. Regarding the treatments. A friend of mine was diagnosed many years ago, back when they tested liver damage with pegs instead of fibroscans/ultrasounds. Her treatment took 48 weeks!!

What was your liver damage level? Mine's between a 1 and 2. I know 4 is cirrhosis. I also realize there are numbers I don't have and don't know what they mean. I noticed in some of the signatures here there are a list of numbers. 

 

PS - Where in Canada? My avatar is the view from our dock at sunrise in Muskoka, Ontario.



-- Edited by tanner on Tuesday 8th of January 2019 09:34:11 AM



-- Edited by tanner on Tuesday 8th of January 2019 09:55:28 AM

__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Senior Member

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Posts: 446
Date:
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Hi Tanner,

Glad you found the forum, you are now in the HCV club but Im pretty sure soon youll be in the dragon slayers club.

I can relate to the shock/disbelief of finding out about harbouring this nasty virus. I spent many days in tears and terror when I found out. (and also oddly enough...relief that I had something that might make the Drs finally believe me and take me seriously after 18 years of weird illnesses and symptoms being dismissed by the medical community) 

 

I do know my source...I had 4 units transfused after having my first baby, but when I went yellow was told it was HepB... then later tested negative for Hep B so I thought it was gone...(didnt know about having the antibodies or anything)  

So 18 years and 2 more children later, getting that letter from the Canadian Red Cross about my infected donor was a big shock.

I had my hubby and kids all tested immediately, thankfully they were all fine.  Im glad your sweetie and kids are negative too...

i hope your Drs appeal works and your insurance pays to get you on treatment soon. It sucks that you have the virus, but its the best time to get it...the treatments are a breeze compared to what was available a few years ago.

 

 



__________________

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

3 years...post tx... successful dragon slayer 



Moderator

Status: Offline
Posts: 544
Date:
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Oops.  Good day, Madam.



__________________

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

 



Member

Status: Online
Posts: 47
Date:
Permalink  
 

That's just simply awesome Cheddy that you're cured!! Thanks for the encouraging post. Btw: I am female, not a "he!"



-- Edited by tanner on Monday 7th of January 2019 10:36:16 PM



-- Edited by tanner on Monday 7th of January 2019 10:36:39 PM

__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Moderator

Status: Offline
Posts: 544
Date:
Permalink  
 

Fyi, Here is Tanner's original post and information about his history.  I thought this would help us keep track of the right info in the right thread.

Permalink Reply Quote 
More indicator.png

New here. Nice to meet you all. Diagnosed in October and completely stunned.

My personal health history is already complicated. Ive been in and out of hospitals for a long time. In 1999 I had a massive bleed in my brain caused by a ruptured AVM (arterio-venous malformation). An AVM is where your capillaries lead directly to a vein instead of an artery. This is a condition you are born with and dont know you have until theres a rupture of the blood vessels or debilitating headaches. Mine ruptured. Had an emergency craniotomy where the vessels were tied off and a clip was put in my brain. A year of physical, occupational and speech therapy helped a lot. But I have struggled with balance, coordination, strength for these past 20 years, the result of which is a lot of falls and weakness. BUT I got to live. The scar tissue however shifted about 10 years later and now I have seizures.

 

So now HepC????  My doctors request for coverage was denied under my Medicare Part D benefit for Mavyret. My current liver status is between 1 and 2. We are appealing the denial. I guess they want the disease to progress enough that you hit stage 4 when cancer develops or a liver transplant is necessary OR they dont have to pay a claim if you die instead. I know thats cynical but why would insurance deny something thats a possible cure so they dont have to pay for more costs down the road?



__________________

Gail Tanner

genotype 2



__________________

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

 



Moderator

Status: Offline
Posts: 544
Date:
Permalink  
 

Welcome Tanner.

Sorry your thread got off to a confusing start but I think it's sorted out now (?).  I'm glad you're here because you have found some very informative, experienced and caring people.  It's true that there is a lot to wrap your head around, from diagnosis to insurance coverage, to treatment and then the follow ups. This forum was a great help in getting me through it all. In turn, we are ready to offer a hand, or an explanation when you need it. 

I will never know for sure how I got HCV.  I like to say it could have been practicing first aid on strangers, and it may have been.  But, it may also be a result from what turned out to be careless behavior. I'll never know for sure.  What I do know is that it's gone.  Gone.

My hep doc told me that when insurance denied treatment that she almost always got it on appeal, so hang in there on that. Blue Cross actually authorized treatment within a week. I would also look into grants if you need to, both through the pharmacy and the drug company that supplies your prescribed treatment, but that won't be necessary if your insurance provider comes through.

I'm so sorry that you have to go through this.  You've had more than your fair share of health challenges.  Believe me, getting this virus out of your system can do nothing but good.  It may be easy, or unpleasant.  As you well know, you just put on your walking shoes and get through it. 

In the meantime, try to keep your stress levels down whenever you can, and take very good care of yourself.

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: 793
Date:
Permalink  
 

tanner's thread

tanner wrote:

5-1-18 Isn't Harvoni the really expensive one ($96K)? Mavyret is $26K for 8 weeks. 


 what insurance didn't pay the pharmacy got me a grant.

i'm not sure where you are located..... i'm in western usa using medicare.

but there are lots of grants out there for us. i know others here are more savy about this than me



__________________

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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



Guru

Status: Offline
Posts: 793
Date:
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lilbrownie wrote:

EEk, so sorry,  my brain is fried from this day, and too many posts read at one time confuse


 happens to me too lil' 



__________________

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=Waiting for 3mo.VL.July=norm liverpanel.13weeks=UND



Member

Status: Online
Posts: 47
Date:
Permalink  
 

robertsamix. The stitches and such were not anything, compared to the brain bleed (AVM) and craniotomy. That's somewhere on here. Hard to follow some of this, I know.  



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

Status: Online
Posts: 47
Date:
Permalink  
 

Thank you Robertsmax. Those numbers (f1-2 and 3A) you quoted are not mine. I don't have anything in my signature yet.  I don't know my genotype or any of that. Messaged my doc this morning to find out the numbers. 



-- Edited by tanner on Monday 7th of January 2019 03:30:16 PM



-- Edited by tanner on Monday 7th of January 2019 03:31:56 PM

__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

Status: Offline
Posts: 24
Date:
Permalink  
 

EEk, so sorry,  my brain is fried from this day, and too many posts read at one time confuse



__________________

Age 62

Diagnosed 2007

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L

GGT 76 U/L

FIBRO BUN 9 mg/dL

FIBRO PT INDEX 103 %

FIBRO METAVIR CLASS F2

INFLA PT SCORE 0.73

INFLA METAVIR CLASS A1/A2

 



Member

Status: Online
Posts: 47
Date:
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Thank you lilbrownie. I am not the cancer survivor. That's ashenvale.



__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.



Member

Status: Offline
Posts: 24
Date:
Permalink  
 

Welcome Tanner!   Give yourself some time to wrap your brain around this.  I know its tough, I've been there.

When I was diagnosed back years ago,  at first, I was like "What is Hepatitus C??"  I found out in a letter from my life insurance company that needed a routine blood test for renewal.    I started researching everything I could , including treatment options.  It was then I became terrified.   

I obsessed about it for months, thinking I would not live to see my daughter get married, and meet my grandkids etc.  My primary care physician asked me to forego Interferon due to my history of anxiety and panic disorder, reassuring me new drugs were being researched.   I went on with my life, praying for the day those new drugs would surface.

I became a health nut, started running, working out, cleaning up my diet.   I stopped asking myself why and how I got this.  I was not an angel in the 80s, but never did intravenous drugs.  I did have a blood transfusion in 1973 and got a tattoo at a shady parlor back before they were legal in our state. Who knows...I had it, and I had to move past the "how's and why's" as hard as it is.  

 

You are a cancer SURVIVOR.  You (we) will get through this.

 

 



__________________

Age 62

Diagnosed 2007

Hepatitis C Genotype Type 1

HCV PCR Quantitative 3,763,192 IU/mL

FIBROSIS SCORE 0.64

FIBROSIS STAGE 0.01

FIBRO ALT 102 U/L

FIBRO AST 68 U/L

GGT 76 U/L

FIBRO BUN 9 mg/dL

FIBRO PT INDEX 103 %

FIBRO METAVIR CLASS F2

INFLA PT SCORE 0.73

INFLA METAVIR CLASS A1/A2

 



Member

Status: Offline
Posts: 16
Date:
Permalink  
 

Hello Tanner - thanks for posting these article links, very interesting and very true about the stigma. I didn't cry when I was told I had terminal cancer, but when I was told about Hep it felt like the end of the world. My oncologist kept saying 'but this is no big deal, you have braved the cancer - but Hep C is treatable nowadays' and I was like 'oh no, this is the worst thing possible', I was in a complete state.

Later on, when trying to rationalise my own reaction, I realised that this was to do with stigma. With the cancer people see it as bad luck, but with hep it feels like it must have been my own fault, my mind kept going through all the things I may or may not have done all those years ago - rather than all the medical episodes, injections, surgeries and transfusions that are more likely to be the cause.

I told my husband and children to get themselves tested just in case, and they were sent to do this in STD department, when Hep C does not even transmit in that way. This in itself already sends a particular message, it will be hard to remove the stigma when associations with 'lifestyle' are everywhere.

__________________

58 y.o, recently diagnosed whilst on chemo - resolved B, chronic C (3a), most likely from early 1980s.  Nov 2018 AST 238 ALT 234 Fibroscan 7.9. 

Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Simultaneously Entecavir for B (to prevent reactivation).



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Hi Tanner . Welcome to the forum!  Sounds like you went to the school of hard knocks what with all Your stitches as a kid and all that! Having to fight all those battles on all those fronts will keep you busy.  I wanted to chime in about your treatment choices.  You being a 3a and f1-2  puts you in a tougher class to cure.  Mavyret is a good choice followed by Epclusa and Vosevi would be my first choice. Both Mavyret and Epclusa are 2-drug combos that have very good outcomes for type 3a. And Vosevi is a 3 Drug combo that is very efficient for type 3a.  Grading your livers F score is at best a educated guess when it shows fibrosis VS chirross. Its a fine line between the two. With fibrosis I would be asking for a 3 drug combo because 3a Is such a fighter.  I have won two appeals concerning my treatments so keep pushing them. Call and pester them, keep on them and you will get your way.      RC

EDITTanner- Sorry for my confusion-I had just read Ashenvales thread Hellow,new here-found our about Hep whilst on chemo and I confused her stats with yours. Disregard my statement on your treatment drugs concerning 3a.      RC



__________________

 M-61(3 Treatments)( SOF-RIBA 2014)(SOF-RIBA-PEG 2016)(HCC 2016) (LIVER TRANSPLANT 8-2017)(VOSEVI-RIBA 2017)   SVR-12. 3-13-18 https://aasldpubs.onlinelibrary.wiley.com/doi/pdf/10.1002/hep4.1280   



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Hello Iris Dragonfly. I doubt it was the craniotomy. It was 1999 after they started testing blood. But it could have been from all the previous times I was in the hospital as a child. From syringes, needle sticks? Always needing stitches for whatever childhood injury I had. At least a half dozen injuries resulting in stitches. Here's an interesting article. You may be able to click on the individual links in the article to see the actual expanded research.  

A 2016 study published in The Lancet found that most of the spread of hepatitis C occurred roughly between 1940 and 1965.

The researchers concluded that this spread likely occurred in hospitals, rather than as a result of lifestyle choices as many people thought.

Another article from the same edition of The Lancet notes that during the highest infection period from 1945 to 1965, glass and metal syringes were commonly reused, which would provide plenty of opportunity for infection.

The authors wrote: "The medical community can now take its share of the responsibility for hepatitis C virus infection."

These findings show a completely different pattern to what is seen today, where most new hepatitis C infections are linked to drug use. According to the Centers for Disease Control and Prevention (CDC), around one-third of injectable drug users aged 1830 have hepatitis C. This number rises to 7090 percent in older and former users.

These different causes of infection between past and present explain why many baby boomers might feel stigmatized by the condition. Some may not even consider themselves to be at risk in the first place.


-- Edited by tanner on Monday 7th of January 2019 01:23:23 PM

__________________

Gail Tanner

65

Female

Genotype 2

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

Diagnosis date: 10/30/18

Treatment not yet started

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 (this is not a typo)

No prior HCV treatment.

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