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Author Topic: You know whats weird?..  (Read 15546 times)

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Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
You know whats weird?..
« on: October 18, 2015, 09:45:54 am »
Is how few people there are on the forums.  I've mentioned this before and it still puzzles me.

I guess everyone is waiting on post results, but for that to be the case , everyone would have started at the same time. 

I would imagine that everyone started at different times, day after day after FDA approval.

Just wondering if people just aren't getting approve, or just lurking, or the tx is so successful that people just don't post like in the past.

It's not just this forum, its every forum I visit.  So quiet.  In fact there are less forums than there were in 2006-08.   

Weird.

dm
« Last Edit: October 18, 2015, 10:30:06 am by drummerman »
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: You know whats weird?..
« Reply #1 on: October 18, 2015, 11:35:09 am »
FWIW, 31 people registered for these forums between Oct. 12 and 17, for an average of slightly over 5 new members/day. I was a lurker for many months before joining after my treatment was underway, but many people seem to join right away and then lurk for quite a while before doing a first post (if they ever post -- it's amazing how many people in the memberlist have never posted). Once people reach EOT, they tend to post less often. Millennials use email less than Gen Xers, who use it less than Baby Boomers, so it's not just forums that have lower traffic.

Gnatty
Logged
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 drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: You know whats weird?..
« Reply #2 on: October 18, 2015, 12:19:46 pm »
Quote from: gnatcatcher on October 18, 2015, 11:35:09 am
FWIW, 31 people registered for these forums between Oct. 12 and 17, for an average of slightly over 5 new members/day. I was a lurker for many months before joining after my treatment was underway, but many people seem to join right away and then lurk for quite a while before doing a first post (if they ever post -- it's amazing how many people in the memberlist have never posted). Once people reach EOT, they tend to post less often. Millennials use email less than Gen Xers, who use it less than Baby Boomers, so it's not just forums that have lower traffic.

Gnatty

Good point.  I had no idea this site was getting an average of 5 new members a day!  Must be a lot of lurkers out there!

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: You know whats weird?..
« Reply #3 on: October 18, 2015, 01:35:28 pm »
I avoided forums right up until I was approved for treatment.  Much of that was because I was still coming out of denial.  Info about hepatitis and banter surrounding it had been depressing to me for so long and I had been so beat down over the decades that I kidnda waited until the news was...well good. A lot of folks don't want to talk about it.  Of course all of us blabber mouths keep enough info and chatter in the pipes to keep those creepers satiated.

What amazes me is how many heppers where not savvy of the new treatments or, for some odd reason just not paying that much attention. Also, we (current active posters) might represent a minority of the greater body of Hep victims. 

I do not no the stats, however, I imagine that boomers represent the largest group
Logged
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: You know whats weird?..
« Reply #4 on: October 18, 2015, 01:35:40 pm »
Hey,

How does one negate a double post?  Sometimes I posting as someone else is and get that notification...I go ahead and post and it doubles.  Sorry to use this thread but it just happened here.
« Last Edit: October 18, 2015, 01:55:37 pm by beto »
Logged
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Bucky

  • Member
  • Posts: 341
Re: You know whats weird?..
« Reply #5 on: October 18, 2015, 01:55:05 pm »
When I registered here (08/2014) there weren't but about 608 members. I think that a 3000 member increase is quite impressive and indicates the need and good information that is available here.
I email some members who no longer post because we used the first DAAs and most attention now is on Harvoni or the Pack. Some moved on since being cured because we burned up this forum when the new meds were hitting the market and we were hungry for information about them and how to get insurance companies to pay. There were only four or five mods back then and now there are many.
God Bless Lucinda and the others for all they did for us when we were full of questions and needed information.
My IDS was always impressed that I was so knowledgeable about treatment options and I handed her the address to this forum.
Bucky
Cured a year and three months ago with Olysio & Solvida




 
Logged
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: You know whats weird?..
« Reply #6 on: October 18, 2015, 01:58:55 pm »
Hey Bucky,

How are you feeling now?  BTW thank you for the insights.
Logged
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline Bucky

  • Member
  • Posts: 341
Re: You know whats weird?..
« Reply #7 on: October 18, 2015, 02:16:38 pm »
Quote from: beto on October 18, 2015, 01:58:55 pm
Hey Bucky,

How are you feeling now?  BTW thank you for the insights.

Actually, I feel pretty damn good for 60 years old! I do have compensated cirrhosis but I only have a few clinical problems from it. My platelets are low but they have started to increase, my WBC is now normal for the first time in 20 years and I have an abdominal varices but it isn't under stress so my Gastro has ordered yearly EGDs to monitor.
I went through a period after finishing treatment that I was a little depressed but I went back to work part time and I have not felt this good in many many years. My mind is so clear now and my motivation has returned. All and all I couldn't ask for more!
Bucky
Logged
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: You know whats weird?..
« Reply #8 on: October 18, 2015, 02:58:48 pm »
It is too few, Kiddo.  Especially given the massive Harvoni advertising campaign.

This is what I know to be true.  Doctors and/or their staff are telling patients that they are unable to obtain insurance approval for the new medications.  If your doctor told you this, please be aware that the sad truth is that they are unwilling to fight for you.  They don't get paid to fight for you.  You have to do this yourself.

Document ALL extrahepatic manifestations of long-term HCV infection.  And then appeal.  You'll likely be denied.  Appeal again.  Continue to appeal until your case gets in front of an independent or external reviewer that is not on your insurance company's payroll.  It makes all the difference.

The "let people wait" mindset has increased since Gilead's Support Path changed it's policy on July 1st and closed access to their patient assistance program to people with insurance. (worth mentioning they will still give coupons to assist with copays and coinsurance but not full medication coverage as in the past.)

There are doctors who relied heavily on the "2 quick denials, then Support Path" protocol.  When that went away so did the majority of medication access for patients that did not have significant liver damage.

I am on my 5th week of Harvoni.  If this forum did not exist, I would not be on medication. 

Appeal, appeal, appeal!  The American Association for the Study of Liver Diseases and the Infectious Disease Society of America are on your side.

http://www.hcvguidelines.org/full-report/when-and-whom-initiate-hcv-therapy 

Logged
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)

Offline Philadelphia

  • Global Moderator
  • Member
  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: You know whats weird?..
« Reply #9 on: October 18, 2015, 03:47:40 pm »
Something else to factor in is that today's treatments are easier and have a much better cure rate than the old treatments. Perhaps people don't need to discuss issues as much. Maybe it's easier so they don't need as much support?
Logged
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 drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: You know whats weird?..
« Reply #10 on: October 18, 2015, 04:59:58 pm »
Quote from: Else on October 18, 2015, 02:58:48 pm
It is too few, Kiddo.  Especially given the massive Harvoni advertising campaign.

This is what I know to be true.  Doctors and/or their staff are telling patients that they are unable to obtain insurance approval for the new medications.  If your doctor told you this, please be aware that the sad truth is that they are unwilling to fight for you.  They don't get paid to fight for you.  You have to do this yourself.

Document ALL extrahepatic manifestations of long-term HCV infection.  And then appeal.  You'll likely be denied.  Appeal again.  Continue to appeal until your case gets in front of an independent or external reviewer that is not on your insurance company's payroll.  It makes all the difference.

The "let people wait" mindset has increased since Gilead's Support Path changed it's policy on July 1st and closed access to their patient assistance program to people with insurance. (worth mentioning they will still give coupons to assist with copays and coinsurance but not full medication coverage as in the past.)

There are doctors who relied heavily on the "2 quick denials, then Support Path" protocol.  When that went away so did the majority of medication access for patients that did not have significant liver damage.

I am on my 5th week of Harvoni.  If this forum did not exist, I would not be on medication. 

Appeal, appeal, appeal!  The American Association for the Study of Liver Diseases and the Infectious Disease Society of America are on your side.

http://www.hcvguidelines.org/full-report/when-and-whom-initiate-hcv-therapy

I'm afraid this is part of the apparent "quietness" of these forums.  I wish it weren't true, but I think it is.

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: You know whats weird?..
« Reply #11 on: October 18, 2015, 05:01:35 pm »
Quote from: Philadelphia on October 18, 2015, 03:47:40 pm
Something else to factor in is that today's treatments are easier and have a much better cure rate than the old treatments. Perhaps people don't need to discuss issues as much. Maybe it's easier so they don't need as much support?

I thought this as well.   Probably a factor.

tx was easier,.... but post tx (for me) feels exactly the same  as my first go around. :(

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: You know whats weird?..
« Reply #12 on: October 19, 2015, 02:29:35 am »
Me and Marianne have hardly any friends anymore...sulk.  :'( cal
Logged
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: You know whats weird?..
« Reply #13 on: October 19, 2015, 11:17:55 am »
Well cal...you guys need to start up your chirping again.
Logged
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: You know whats weird?..
« Reply #14 on: October 19, 2015, 06:18:07 pm »
Hi Beto,
I am not seeing double posts from you - perhaps it just shows up on your end. Is anyone seeing this?

Great conversation going on here. (I guess I am a lurker today)
Logged
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 Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: You know whats weird?..
« Reply #15 on: October 19, 2015, 06:35:29 pm »
Quote from: beto on October 19, 2015, 11:17:55 am
Well cal...you guys need to start up your chirping again.
we need that a Tommy. He's the tom cat amongst us pigeons! Cal :-\
Logged
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: You know whats weird?..
« Reply #16 on: October 19, 2015, 08:05:50 pm »
Quote from: Else on October 18, 2015, 02:58:48 pm
It is too few, Kiddo.  Especially given the massive Harvoni advertising campaign.

This is what I know to be true.  Doctors and/or their staff are telling patients that they are unable to obtain insurance approval for the new medications.  If your doctor told you this, please be aware that the sad truth is that they are unwilling to fight for you.  They don't get paid to fight for you.  You have to do this yourself.

Document ALL extrahepatic manifestations of long-term HCV infection.  And then appeal.  You'll likely be denied.  Appeal again.  Continue to appeal until your case gets in front of an independent or external reviewer that is not on your insurance company's payroll.  It makes all the difference.

The "let people wait" mindset has increased since Gilead's Support Path changed it's policy on July 1st and closed access to their patient assistance program to people with insurance. (worth mentioning they will still give coupons to assist with copays and coinsurance but not full medication coverage as in the past.)

There are doctors who relied heavily on the "2 quick denials, then Support Path" protocol.  When that went away so did the majority of medication access for patients that did not have significant liver damage.

I am on my 5th week of Harvoni.  If this forum did not exist, I would not be on medication. 

Appeal, appeal, appeal!  The American Association for the Study of Liver Diseases and the Infectious Disease Society of America are on your side.

When I saw my Hepatologist for the first visit, he mentioned Harvoni and only needing to go through 2 denials before we could appeal to Gilead for coverage of this medication.  I think he just assumed I was GT1a.  He seemed kind of surprised at my follow up appointment when my GT came back as 3a.  By then Daklinza was approved, but he did mention that if insurance kept denying, I would be out of luck.  He wasn't really impressed with what I considered to be extrahepatic manifestations (fatigue, chronic muscle and joint aches, Raynauds, etc).  I was the one who actually initiated the appeal by writing an extensive request to my insurance provider referencing the latest research and recommended treatment for GT 3.  I obtained much of the info and/or links for my information from this forum!  Since my insurance providers medical policy was to treat GT3 with peginterferon + Riba + Sovaldi x 12 weeks, I was determined to provide the clinical rationale as to why I was not a good interferon candidate as well.  I put together a summary of my health history (as well as significant family health history).  I then went to my PCP and requested that they submit clinical documentation to verify my medical history.  While I do believe my Hepatologist also provided some clinical info for the appeal, I truly believe being proactive on my part ultimately resulted in my denial being overturned. 

I have to say I, personally, am so very grateful to everyone who contributes on this forum...the valuable information and resources, the support, opinions, and humor. 

I hope others with chronic HCV find this forum and are able to access the treatment they need!

Mary
Logged
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: You know whats weird?..
« Reply #17 on: October 19, 2015, 09:16:26 pm »
Oops...somehow I embedded my post into Else's quote.  :-[
Logged
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline Rosie13

  • Member
  • Posts: 297
Re: You know whats weird?..
« Reply #18 on: October 19, 2015, 10:24:58 pm »
I do miss some of the people that were so encouraging as I was trying to get approved.Where did New York Girl go? I miss her !
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Online Lynn K

  • Global Moderator
  • Member
  • Posts: 4,546
  • Get tested, get treated, get cured, fight Hep c!
Re: You know whats weird?..
« Reply #19 on: October 19, 2015, 11:48:16 pm »
Well back when I walked 20 miles up hill in both directions to get to my doctors office.... we didn't have these here now fancy rootin tootin forum whatca call its lol

Seriously though back when I was treating I just had me, myself and I for support. I found my first forum Delphi Forum member since November 2011 and that was after treating 3 times and being diagnosed with cirrhosis.

I didn't know much then and was losing hope

What a difference 4 years makes is all I can say!

I had my 24 week post treatment test today just AFP and viral load. I will alert the media when I have my viral load results back hopefully by weeks end

best to all :)
Logged
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 Rosie13

  • Member
  • Posts: 297
Re: You know whats weird?..
« Reply #20 on: October 20, 2015, 12:14:24 am »
Lynn,almost finished your incredibly long haul.We are in awe of you guys.can't wait to hear the good news!!!!!
Logged
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Cal

  • Member
  • Posts: 957
  • Cal on Viekira Pak
Re: You know whats weird?..
« Reply #21 on: October 20, 2015, 03:12:05 am »
Lynn,
Can you make sure the Australian Media are alerted as well! We need to know! Good on you dear one.

I was lucky enough to find a forum before I got tx the first time in 2011 and they are still my lifeline. We are lucky to have our community connected together in support, care and friendship online. I am also so lucky in Australia to have met most of our forum. We have get togethers when we can and have lunch etc. They are my dearest friends.

This forum is also special I have found. It allows the serious to be mixed with the stress relieving mad. We connect because we share the common bond and we are a community.  Cal :)
Logged
HCV 30 years. Geno 1A.
Veikira Pak with ribas on Compassionate Access.
Brisbane. Australia. began 21.8.15.
17 weeks.  Previous non responder 2011.
V/L 9 million
2 week V/L 54
12 weeks V/L UND
No 17 week  EOT V/L
EOT Post 4 weeks UND.

Offline slats1056

  • Member
  • Posts: 765
  • SVR to all and to all a good life!
Re: You know whats weird?..
« Reply #22 on: October 20, 2015, 08:38:38 am »
  Lynn, Sounds like one of those conversations with Your parents--- When I was Your age!!!! Good one. Great news. You most definitely deserve it!!!! This has been My first foray into any kind of forum. You were one of the first ones to welcome Me. I appreciate it  immensely! People like You have made it so much easier and dare I say ENJOYABLE during treatment. It has kept Me from losing My mind at times. Damn, where did I put that thing anyway???? Truly amazing times We live in with all of the break throughs. Waiting to see Your results.

  JOIN IN THE HAPPY HEPPERS CONGA LINE! MAYBE WE CAN MAKE IT LONG ENOUGH TO REACH AROUND THE WORLD!!!!
Logged
73 non ab 98 hep c refused pegint/riba
6-15 Gen.1b 1/2 MIL ALT72 AST37 No cirrhosis
7-15  Harvoni 12 weeks
10-14-15 EOT VIRAL LOAD NON-DET  
12-30-15 EOT+12 VIRAL LOAD NON DET  SVR12            8-9-18 HCV LOAD 1.02IU/ml AST22  ALT30 RELAPSE?
9-18-18 confirmed gt 1b relapse
10-16-18 approved 16 weeks Mavyret

Offline drummerman

  • Member
  • Posts: 538
  • For those regarded as warriors....
Re: You know whats weird?..
« Reply #23 on: October 20, 2015, 10:20:38 am »
Quote from: Lynn K on October 19, 2015, 11:48:16 pm
Well back when I walked 20 miles up hill in both directions to get to my doctors office.... we didn't have these here now fancy rootin tootin forum whatca call its lol

best to all :)

LOL.

dm
Logged
Diagnosed07
Interferon/riba 2008 - non-responder
5/16/15 - AST -34
ALT - 35_ HCV RNA - 10,783,000
 7/6/15 - started viekira/riba
8/11/15  Week 5 <15 vl,  AST 18, ALT 18
9/11/15 Week 9  "HCV NOT DETECTED"!
AST 16, ALT 11.  10/16/16 - 2 weeks post EOT = "HCV NOT DETECTED!   AST - 18,  ALT 14
12/29/15 -12 wk EOT-HCV NOT DETECTED! AST 23, ALT 15
3/26/16 - 24 wk post EOT - HCV NOT DETECTED!! AST 19, ALT 21
1 yr eot - AST 20, ALT 17

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: You know whats weird?..
« Reply #24 on: October 20, 2015, 01:06:50 pm »
Lynn, the "up hill in both directions" can only mean one thing: your doctor back then was named M. C. Escher. Did you take a look at the "medical diploma" on his wall? Quack quack! No wonder he diagnosed so many of his patients with vertigo!

-can't wait to hear your good news.

Gnatty
Logged
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 Else

  • Member
  • Posts: 523
  • Appeal, appeal, and appeal again!
Re: You know whats weird?..
« Reply #25 on: October 21, 2015, 01:40:09 am »
Quote
I truly believe being proactive on my part ultimately resulted in my denial being overturned. 

Yeah it did, MaryC!!!  Good for you and I hope many, many people read your post.  Self-advocate and be proactive to the nth degree.

The information I was graciously offered by a stranger on this forum made ALL the difference.  Seriously, after 3 denials I was out of gas and out of ideas.  Well, except googling a lot about medical facilities in Chennai, India.

Lynn, you crack me up.  Remember, it was 20 miles uphill both ways in the rain!  ;)
You're a rock star of quiet perseverance.

And *boom*, Gnatty.  An Escher reference.  Nice!  I get dizzy just thinking about it.
Logged
F/53 yr
diagnosed 1995
Genotype 1a
ALT: 58 AST: 39 ALK: 105
Viral load 4,201,950 IU/ml
Fibroscan 6.5 (F1-F2) Fibrosure 0.36 (F1-F2)
Treatment-naive
After 3 denials, finally approved!
Harvoni 12 wks - start date 9/15/15
4 wk labs 10/14/15
ALT: 12 AST: 16 ALK: 85
HCV Not Detected!!!
8 wk labs 11/10/15
ALT: 13  AST: 15  ALK: 77
12 wk (EOT!) labs 12/8/15
ALT: 11 AST: 15 ALK: 78
HCV Not Detected!!!
10wk posttx labs 2/11/16
ALT: 22 AST: 17 ALK: 61
HCV Not Detected!! SVR10!!!
SVR10 (99.7% Cured!!!)
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