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Author Topic: Hi Guys - I'm new here  (Read 12587 times)

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Offline Allen Cunningham

  • Member
  • Posts: 59
Hi Guys - I'm new here
« on: January 09, 2016, 06:47:22 pm »
Diagnosed 8/97 with HepC
Liver Transplant 7/2004
Genotype 1b, Biopsy:12/2015: F-0, Slight Inflammation, TX Naive
v/l: ~600,000 - ~1,000,000 ALT: 26, AST: 26
Starting 12 wks Harvoni in Jan 2016

Hi Guys, I was diagnosed in 1997 with mild symptoms. Could have been infected anytime between mid 60's to late 70's. I was a medic in Vietnam and around a lot of blood, but also used IV drugs, so who knows how I was infected.

I got very sick for the next few years and then got a living donor transplant in 2004 and have felt great since then but I want to get the virus out of my system.

Even though I have no fibrosis and just slight inflammation, my insurance Medicare/Tricare has approved 12 weeks of Harvoni.

During my Biopsy at UCSF, the Hepatologist said I could probably get by with 8 wks of treatment since no fibrosis, and low viral count, so I am wondering if I shouls stop after 8 weeks or go for the full 12 weeks

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Hi Guys - I'm new here
« Reply #1 on: January 09, 2016, 07:06:35 pm »
Hi Allen, and welcome to the forums! :) So great that you got approved (and easily it sounds like) for Harvoni.

Personally, I think if you have been approved for 12 weeks of Harvoni, take it all! It will further increase your already very high odds of being cured - even if just by 1-2%. Most people have no significant side effects from Harvoni, so go for it.

Good luck, and keep us posted. :)

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

Offline Bree

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  • Posts: 576
  • "Today is a good day for a great day!"
Re: Hi Guys - I'm new here
« Reply #2 on: January 09, 2016, 08:18:00 pm »
Hey Allen and Welcome!

I'm with Kim.  If you have the chance for 12 weeks and can take it, I would do that.

My doctor always goes for the 12 weeks for patients if he can get it... I'd rather go the extra mile than worry if it was enough.  And, I'd want the extra 1-2% cure rate that 12 weeks will give you.

I'm excited for you... You have weather so much already, this will be icing on the cake!
Dx 1997 Geno 1a
2002-2003 PEG Intron/riba (48 wks) respond/relapsed
Pre-Harvoni - Viral Load: 13.5 M - Log 7.1
Fibrosure Score F1-2  Pre-Treatment:  AST 73 / ALT 88

7/6/15 Started Harvoni (12 weeks)
10/5/15 HCV NOT DETECTED (One week post EOT)
11/9/15 NOT DETECTED!!! (6 wk post)
12/21/15 NOT DETECTED (12 wk post) 
3/14/16  NOT DETECTED (24 week post)AST 26 ALT 18
SVR ACHIEVED!!! 
CURED YES!!!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Hi Guys - I'm new here
« Reply #3 on: January 09, 2016, 08:37:03 pm »
Welcome, Allen. I agree with Kim ad Bree. Harvoni often kills off the HCV in the blood in the first few weeks, hence after just 4 weeks of treatment many of us get a Viral Load result of UNDETECTED. During the rest of the treatment, Harvoni is doing its best to ferret out the bad guys from their hiding places. Even after 8 weeks, there's a slight chance some virus has successfully evaded the Harvoni. There's a smaller chance after 12 weeks. Any virus that survives treatment replicates rapidly, so upping your odds now lowers the chance of having to re-treat later.

If you end up being the rare person who has very rough side effects, that would be a different story, but otherwise, go for it! You may even find yourself enjoying Harvoni if you get the "Harvoni High" -- extra energy, thanks to which I got an amazing amount of stuff done during my treatment.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

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

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

Offline Allen Cunningham

  • Member
  • Posts: 59
Re: Hi Guys - I'm new here
« Reply #4 on: January 10, 2016, 01:21:28 am »
Thanks guys, what a great forum this is!

I am going to take your advice and do the 12 weeks and hope I get the Harvoni High!

I didn't expect to be approved at all since I had no fibrosis, and only mild inflammation. During my Biopsy at UC San Fran, the Hepatologist said Medicare usually pays the full price for treatment. Combine that with my secondary, which is Tricare and I am only going to pay $20 for shipping.

I was going to pay whatever it took for Harvoni because I knew I could not go through Liver disease again.

There were two things I knew I could never go through again - Getting off of years of Methadone addiction, and fighting liver disease again.

So my Harvoni is going to ship on Jan 14th and I'll keep you posted

Offline JackN

  • Member
  • Posts: 52
Re: Hi Guys - I'm new here
« Reply #5 on: February 21, 2016, 08:53:11 am »
Allen,

Go for 12 weeks. To start, I was given the 8 week treatment protocol as I was low viral load (575,000), no chirrosis, liver functions normals (AST etc), treatment naive, but at four weeks, the viral load was 63.  At six weeks, the viral load was 21. I pushed for an additional four weeks, doctors agreed, insurance paid after a denial hearing.  Now I have five more pills to take to be at the EOT but just last week, I finally saw the words NONDETECTED in my labs (even my GI physicians assistant called she was so excited).  (It had been almost a month since my last labs so I don't know the exact week I went undetected).  A few of us are slow to clear, and you better believe I'm still taking my last few pills.  :)  And hoping my labs post treatment stay nondetected too.  Glad you are going to take the 12 weeks. Good decision in my opinion.
1A
Likely infected 1970's
VL 575,000
Liver Functions normal (ALT/AST)
F0 Fibroscan
Started Harvoni 12-5-15
4week labs 63 VL
6week labs 21 VL
2-17-16 NONDETECTED :) prior to 12 week EOT
3-28-16 EOT 4 week testing = nondetected
5-11-16 EOT 10 week testing = nondetected

Offline Allen Cunningham

  • Member
  • Posts: 59
Re: Hi Guys - I'm new here
« Reply #6 on: February 21, 2016, 12:25:05 pm »
Hi Jack -

I am going for the 12 weeks. I went on treatment on 1/19/16 and in 4 days I went from a viral load of 1,000,000 to 444!

What an amazing treatment Harvoni is. I have had no side effects except for a very pleasant buzz the first week!

My labs on 2/6 showed:

HCV RNA PCR Qt <15
HCV RNA, PCR Q <1.18

HCV RNA Detected

So it was within normal limits, however some HCV RNA was detected after the two week labs.

My next lab is tomorrow and I am hoping the scores are the same, only no HCV RNA detected!

I am blessed to have this treatment available while having HCV

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: Hi Guys - I'm new here
« Reply #7 on: February 21, 2016, 12:49:00 pm »
Wonderful news Allen! You're doing great.

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

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: Hi Guys - I'm new here
« Reply #8 on: February 21, 2016, 03:29:47 pm »
Those are the sort of numbers you want to see. Congratulations (and another vote for 12)!
CURED SVR24  Class of 2015
Wk 12 post EOT 30.11.15: ALT 14 AST 22 GGT 22 VL UND
Week 19 07.08.15: ALT 17 AST 23 GGT 25
Week 12 18.06.15: ALT 21 AST 23 GGT 28
Week 8 25.05.15: ALT 23 AST 27 GGT 30 VL UND
Week 4 20.04.14: ALT 30 AST 36 VL 40
Treatment start 23.03.15: ALT 137 AST 185 VL 342,600
Cirrhosis Child-Pugh A, Genotype 1a - Viekira Pak + riba 24 weeks
Total failure interferon/ribavirin/boceprovir Mar 2013
https://www.hepmag.com/blogger/grace-campbell

Offline Allen Cunningham

  • Member
  • Posts: 59
Re: Hi Guys - I'm new here
« Reply #9 on: February 21, 2016, 07:07:59 pm »
Diagnosed 8/97 with HepC
Liver Transplant 7/2004
Genotype 1b, Biopsy:12/2015: F1, Slight Inflammation, TX Naive
Started 12 wks Harvoni Jan 19, 2016
v/l: ~1,000,000 => Normal (<15)
ALT: 19, AST: 20

Feeling great, going for 12 Wks, this is an amazing medication!

If it had been around in '97 when I was diagnosed I could have gone on it then and maybe not had to have a liver transplant. I had Cirrhosis then but the side effects were not intolerable until '2000, when I started having bouts of SBP, exploding Varices, Ascitis, Encelopathy, etc.

I don't know how much a liver heals from scarring, low platelets, high protimes, etc.

Anyway, it's just nice getting the virus out of my body

Offline HazelAustralia

  • Member
  • Posts: 178
Re: Hi Guys - I'm new here
« Reply #10 on: February 22, 2016, 03:51:51 am »
Welcome Allen,
You can only see how much your liver heals but there's a really great chance you will get the virus out of your body.
Best wishes,
Hazel
Female age 53
Australia
Contracted in the 1980's
Genotype 1A
VL 314k

Started treatment with Veikira Pak and Ribaviron on Thursday 17th December 2015
NOT DETECTED, End of Treatment, 16th March 2016

Offline BillT

  • Member
  • Posts: 573
Re: Hi Guys - I'm new here
« Reply #11 on: February 22, 2016, 10:27:20 am »
Hi Allen,
            Welcome home brother.A lot of us got it when we were in.lt doesn't matter how we got it but we can get rid of it now,and that's what counts.l'm glad you're doing so well.Your numbers look great,it's a amazing feeling when you see it working.Good luck to you.
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline Allen Cunningham

  • Member
  • Posts: 59
Re: Hi Guys - I'm new here
« Reply #12 on: February 22, 2016, 10:57:58 am »
Hi Bill - So glad for you being undetected, what a great feeling!

I might have gotten my virus in the military while serving as a medic in South Vietnam and being around a lot of blood, or injecting drugs while in VN and also after I got out of Vietnam living in L.A.

In the early 70's I got on a Methadone program in L.A. through the Veterans Administration and when I had labs done, they marked my lab slip as 'Liver Damage'.
Then in the Navy in 1978 I was told I had non A, non B Hepatitis and the young lab techs told me, 'Don't worry about it, it's not a problem, just don't give blood' - They were clueless back then.

Offline BillT

  • Member
  • Posts: 573
Re: Hi Guys - I'm new here
« Reply #13 on: February 22, 2016, 11:27:55 am »
A lot of us got it in the military Allen.Sometimes I wonder if this started in Nam but I guess we'll never know.I was diagnosed in 80 when I went to give blood and they were calling it non-A non-B.Like I said it doesn't matter how we got it but that we can be cured now.It's a huge relief when you know the dragon is finally gone.I know you will be after the transplant so it doesn't do more damage.l'm 100% service connected so I got my treatment through the VA.Best of luck to you and I have a good feeling that you will be cured.One thing to remember that I've noticed with the Harvoni is that some are still showing a bit of the virus at the EOT but they're going on to SVR.We've had a few discussions about that and think that maybe it's just bits of dead virus hanging around.Keep us posted and as I said best of luck to you.
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline Allen Cunningham

  • Member
  • Posts: 59
Re: Hi Guys - I'm new here
« Reply #14 on: February 22, 2016, 11:38:51 am »
Thanks everyone, will keep all of you posted on my progress.

Bill - did you get service-connected disability because of HepC ?

Offline BillT

  • Member
  • Posts: 573
Re: Hi Guys - I'm new here
« Reply #15 on: February 22, 2016, 11:45:21 am »
It was PTSD and I'm bi-polar on top of that.Nice combination huh?I also broke my back.The Hep C was an afterthought.It seems the Army didn't think I was messed up enough already.lol
Contracted 1973 Military
Diagnosed 1980
Pegintron treatment 2004 unsucessful
Genotype 1b
FibroScan 10 (F2)
Start Viekira 10.17.2015

AST 40 ALT 69
VL 440k
10.31.2015/Week 2 Labs : AST 14/ALT 17
No VL done
10.14.2015/Week 4 labs : AST 14/ALT 14
VL UNDETECTED!!!
12.11.2015/Week 8 Labs : AST 12/ALT 13
No VL done
01.05.2016/EOT labs : AST 15/ALT 13
VL UNDETECTED!!!

12 WEEK SRV:UN-BLOODY DETECTABLE !!!!!!!!

24 WEEK SVR:UNDETECTABLE!!!! Thank You God.

Fibroscan 6Mo. Post Treatment 7.15.2016-5.3(F1)

Offline Allen Cunningham

  • Member
  • Posts: 59
Re: Hi Guys - I'm new here
« Reply #16 on: February 22, 2016, 01:46:20 pm »
At least you are undetected now!

 


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