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Author Topic: Bad/Good News Today  (Read 14115 times)

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Offline Kat83

  • Member
  • Posts: 12
Bad/Good News Today
« on: February 24, 2015, 09:29:40 pm »
Bad news: Just confirmed Hep C positive as a genotype 1a.


Good news:
I have no fibrosis (.07 was reading - but not entirely sure what that means - it seems F1 starts at .21) and my viral load is below 500k (reading is 153,498).  In addition, I've been diagnosed when a cure is possible, which is amazing. 

Doctor will try for Harvoni and an 8 week treatment, but he is concerned that I may be turned down because I have no fibrosis.  Has anyone else been in a similar situation?  It seems ludicrous that a company would wait to treat when the damage is more severe and the treatment possibly longer.   

Additionally, I would like to thank everyone who has shared their experiences with treatment, insurance, and just generally dealing with Hep C.  It's helped me ask the proper questions and go to my appointments informed. 

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Bad/Good News Today
« Reply #1 on: February 25, 2015, 12:11:48 am »
Good news: You have genotype 1 which is now one of the easiest to treat. It means no ribavirin.

Moe good news - Your viral load is low and you will only need 8 weeks of treatment
« Last Edit: February 28, 2015, 10:39:35 pm by lporterrn »
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline Kat83

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  • Posts: 12
Re: Bad/Good News Today
« Reply #2 on: February 25, 2015, 12:18:53 am »
The first thing I did when I heard that I may be positive was read everything I could, including your second book.  I'm thankful treatments have changed, but it did give me an amazing amount of information.  Thank you.

Now, a question.  Should I ask if 6 weeks over 8 weeks is an option?  I've never been treated before because I just found out, but I've likely had this for quite a long time.  I was either born with this or I got it from my mother when I changed her chest tubes roughly 20 years ago.  Does length of infection matter?


Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Bad/Good News Today
« Reply #3 on: February 28, 2015, 10:39:16 pm »
I goofed - my hand slipped on 6 - it should have been 8 - I corrected that so I don't have more bad info out there. So sorry.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline BubbaT

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  • Posts: 267
Re: Bad/Good News Today
« Reply #4 on: March 01, 2015, 05:54:37 pm »
Hi kat, the. Good news is you have little damage compared to others, so be encouraged about your success , Keep fighting for your right to be treated regardless of how many delays you have to appeal thru!

Also your diet is extremely important, study to eat well and you can help yourself along the way.

We are warriors against a common enemy,  I'm f4, I just got approved, never treated,
Should start harvoni this week, I'm ready, I have been fighting this devil for 20 yrs!

So keep the course!  You win!
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline motor

  • Member
  • Posts: 58
Re: Bad/Good News Today
« Reply #5 on: March 05, 2015, 06:05:27 pm »
Amen to BubbaT's remarks.  You've got to be your own advocate.  Plus, be sure that your treatment team is hands on.  Dragonslayer was given 8wks Harvoni with no checkups or interval testing and end of treatment test was not UND.
   The first plan for me was Sovaldi and interferon last summer.  NUTS!! From my research I knew Harvoni was coming in October.
   I got into VA system and tested Fibroscan 0-1.  Come back in 3mos.  I go in expecting more bloodwork and Fibroscan and got nothing except to be told they only treat stage 2 or worse.  Come back in a year!  UNACCEPTABLE.
   After not taking my calls or returning my message, 12/29/14 I go to that clinic without appt and sit until I can tell a nurse I've made an appt at Duke Med and I'm not waiting a year.  BAM! I get bloodwork, I get Fibroscan, I get scheduled for 12wks Harvoni starting 3/3/15.
  I couldn't believe it.  Further affirmation that "the squeaking wheel gets the grease". 
Age 66male GT 1a/CT  Dx 5/19/14
Likely infected early 70's
VL 3.7mil FibroScan F2 FSure F2
ALT 84(12-78) AST 56(3-36) High
Tx naive
8wks Harvoni start 3/3/15 VA
4wks ALT 25(12-78) AST 22(3-36) Normal 
        VL  <15  NOT DETECTED
8wks ALT 24 AST 19 
EOT  VL   <15  NOT DETECTED
SVR12 VL <15  NOT DETECTED

Offline Kim

  • Member
  • Posts: 34
Re: Bad/Good News Today
« Reply #6 on: March 18, 2015, 08:17:38 pm »
Your doctor is the best one to help you and if not, contact Gilead, the manufacturer of Harvoni, for assistance in dealing with your insurance company.
Good luck!

Offline BubbaT

  • Member
  • Posts: 267
Re: Bad/Good News Today
« Reply #7 on: March 19, 2015, 09:05:14 pm »
Motor, are you being treated thru the VA or others?

I'm a veteran and haven't been to them, I'm using employer provide insurance.
Did you say that you made an apt with duke? 

I like your fire motor...  How is rx going?
Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline motor

  • Member
  • Posts: 58
Re: Bad/Good News Today
« Reply #8 on: March 20, 2015, 03:46:31 pm »
@ BubbaT, I am being treated thru the VA.  Are you in their system?  I strongly advise applying if not.  It's not the VA of our youth.  A lot of the care is better than the what's available to most.  Plus, you can't have too many options.  See  the Gold Standard thread in the Considering Treatment Forum.
   I cancelled the Duke appt when the VA scheduled my treatment.  The treatment's been a non-event, no side effects.  I'm anxiously awaiting my 4wk appt 4/1 with my GI doctor and the bloodwork results that I'll get online by the 6wk nurse phone call. 
   I hope it's getting better for you.
Age 66male GT 1a/CT  Dx 5/19/14
Likely infected early 70's
VL 3.7mil FibroScan F2 FSure F2
ALT 84(12-78) AST 56(3-36) High
Tx naive
8wks Harvoni start 3/3/15 VA
4wks ALT 25(12-78) AST 22(3-36) Normal 
        VL  <15  NOT DETECTED
8wks ALT 24 AST 19 
EOT  VL   <15  NOT DETECTED
SVR12 VL <15  NOT DETECTED

Offline moma

  • Member
  • Posts: 48
Re: Bad/Good News Today
« Reply #9 on: March 20, 2015, 08:52:32 pm »
Doctor will try for Harvoni and an 8 week treatment, but he is concerned that I may be turned down because I have no fibrosis.  Has anyone else been in a similar situation?  It seems ludicrous that a company would wait to treat when the damage is more severe and the treatment possibly longer.   

I don't have fibrosis and was ok'd for treatment. First time around I was rejected, then wrote a letter and was accepted within a week. Yes your right, it is nuts that a company would actually end up spending more money in the long run waiting for a person to get worse before treatment.
Keep pushing on- MoMa

Offline BubbaT

  • Member
  • Posts: 267
Re: Bad/Good News Today
« Reply #10 on: March 21, 2015, 08:40:44 pm »
@ BubbaT, I am being treated thru the VA.  Are you in their system?  I strongly advise applying if not.  It's not the VA of our youth.  A lot of the care is better than the what's available to most.  Plus, you can't have too many options.  See  the Gold Standard thread in the Considering Treatment Forum.
   I cancelled the Duke appt when the VA scheduled my treatment.  The treatment's been a non-event, no side effects.  I'm anxiously awaiting my 4wk appt 4/1 with my GI doctor and the bloodwork results that I'll get online by the 6wk nurse phone call. 
   I hope it's getting better for you.

Thanks motor, I'm gonna look into it, I'm not happy with the Gi I have now, he is part of a group of 10 and it's like a McDonald's in there, I have had problems with meds and hearing back from the nurse and I'm waiting on a refill now and wondering why they can't give you all the 12 weeks meds at one time?

The pharmacy has faxed the refill 2-3 times and the dr has not  responded , he travels between clinics and must have hundreds of patients. Every time I see them they want me to have another colonoscopy ?
Sheesh, can you say meat market?   dang son, get me outta here!

Next Tuesday I start week 4.  Doing better each day on the treatment. Need a refill on the meds.
I'm glad you got some help from the VA,

Age 57 male
Infected late 70's
Diagnosed 95
1a, 2 prev biopsy 95, 2004
Ct 2007, 2015
Treatment Naive
F4 A3. Fibrosure/ CT 2-5-15. Ammonia 222
VL 2.2 mil.
Started Harvoni  3-3-15. 12weeks, finished 5-26-15
4 week VL undetected
12 week EOT undetected

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Bad/Good News Today
« Reply #11 on: March 23, 2015, 10:20:03 am »
Hi Motor

I am 8 years active Army I thought you had to have a service disability or be unable to afford insurance or maybe serve in a conflict to qualify for VA medical.

No service injuries, medical through my job and was a cold warrior 1976 to 1988 and 1984 to 1988 all in West Germany. Would I be ellgible?
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Lynn K

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  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Bad/Good News Today
« Reply #12 on: March 23, 2015, 10:39:32 am »
Ok I just found the VA web site and answered some questions they said I don't qualify income too high but did encourage me to apply anyway incase rules or my situation change in the future I would at least have an app in the system
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline motor

  • Member
  • Posts: 58
Re: Bad/Good News Today
« Reply #13 on: March 23, 2015, 11:17:39 am »
Hey Lynn, I always thought same as you that you had to have war injuries, but the requirements are ever changing and it's good to have your application in the system.  It seems there's an ebb and flow to the numbers the VA takes in.
   
Age 66male GT 1a/CT  Dx 5/19/14
Likely infected early 70's
VL 3.7mil FibroScan F2 FSure F2
ALT 84(12-78) AST 56(3-36) High
Tx naive
8wks Harvoni start 3/3/15 VA
4wks ALT 25(12-78) AST 22(3-36) Normal 
        VL  <15  NOT DETECTED
8wks ALT 24 AST 19 
EOT  VL   <15  NOT DETECTED
SVR12 VL <15  NOT DETECTED

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: Bad/Good News Today
« Reply #14 on: March 23, 2015, 02:35:27 pm »
Hi motor

As I said I did a questionnaire at the VA web site I don't qualify due to my income too high. I guess I don't need VA insurance at this time since I have good insurance through my job. When I thought I was not going to be approved by my insurance I did not qualify for Giliead Support Path either due to too much household income.

Thankfully my insurance finally approved the meds or I would be SOL I guess
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

 


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