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Post Info TOPIC: Vote NO on Hep C


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RE: Vote NO on Hep C
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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

4 years.... successful dragon slayer



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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



Senior Member

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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 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!!



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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.

PermalinkReplyQuote
Moreindicator.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



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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

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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 on3.6.18:.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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lilbrownie wrote:

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


happens to me too lil'



__________________

Gt:1a-36yrs.Started Intron-A in 96' for 2.5mo-VL still too high.taken off. Labs on3.6.18:.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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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 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!!



Senior Member

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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 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!!



Member

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Posts: 45
Date:
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EEk, so sorry, my brain is fried from this day, and too many posts read at one timeconfuse



__________________

Age 62
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

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



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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 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!!



Member

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Posts: 45
Date:
Permalink  
 

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

When I was diagnosed back years ago, at first, I was like "What is HepatitusC??" I found out in a letter from my life insurance company that needed a routineblood 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 intravenousdrugs. 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
Diag 2007

Started Harvoni January 8, 2019 , EOT test results 3/5:

HCV PCR Quantitative Detected <12 IU/mL

AST 27 U/L
ALT 29 U/L

SO FAR , SO GOOD!

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



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Posts: 28
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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, diagnosed on chemo -resolvedB, chronic C (3a). Nov 2018 AST 238 ALT 234 Fibroscan 7.9.Epclusa 12 weeks - SOT Dec 15, 2018, EOT March 9, 2019. Entecavir for B (to prevent reactivation).

Updated 4 wk test - AST 25 ALT 25 Hep C RNA not detected. Chemo restart 8 Feb



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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.

A2016 studypublished inThe Lancetfound 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 articlefrom the same edition ofThe Lancetnotes 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 theCenters 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 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!!



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Posts: 1070
Date:
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I like your topic titlesmileHi there! Welcome to the forum, come on in and get comfey, we have many knowledgeable folks here.

I'd like to say, I can relate to your denial dilemma completely, I was denied 7 times by various agencies and even when I got subsidiary insurance. I was persistent though and my hepatologist submitted appeals, and finally got my treatment over the last summer.

Will keep fingers crossd for you, it will happen. As for how you got it...could it have been the brain surgery? I think they would have been screening blood products 20 years ago, I believe I contracted mine from a tattoo.

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 nave....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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New here. Nice to meet you all. Diagnosed in October and completely stunned. I've wracked my brain to figure out how I could've contracted this.

By the way, I'm trying to figure out where and how to post and it was suggested I start a new thread. So some of you have already read this entry from me on Annie's thread. Questions were asked of me on that thread and I'm not sure if I should keep replying there to give my answers. So I'll just start all over again.

My personal health history is already complicated. I've 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 don't know you have until there's 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 Hep C???? 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 that's a possible cure so they don't have to pay for more costs down the road?



__________________

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!!

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