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Author Topic: SAD NEWS  (Read 12960 times)

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Offline Lee

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  • Posts: 31
SAD NEWS
« on: March 24, 2016, 01:50:46 pm »
I started treatment on Harvoni last April (now free of Hepatitis, thank god) and I was contacted by Debula, who had started only a few days earlier. She and I kept in touch and followed each other's progress. Last fall she started to receive very bad news - she had cysts on her liver and elsewhere. She was ultimately diagnosed with liver cancer, and now I have just seen on facebook that she has died. I never met her, but she was a very nice person who was so supportive of me and others on this forum. I thought those of you who conversed with her might want to know. Her daughter is Bobbi Madden if you wish to communicate with her on facebook.

Lee
Female
Infected mid-1970's
Diagnosed 2013
Viral load prior to treatment: 6.6 million
Genotype: 1a
Started Harvoni: 4/20/15
Four week viral load: <20 too low to quantify
Eight week viral load: undetected

Offline KimInTheForest

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  • Posts: 1,972
  • Believe in yourself
Re: SAD NEWS
« Reply #1 on: March 24, 2016, 01:53:33 pm »
I am so terribly sorry to hear this news, Lee. Debula was such a trooper and such a fighter. Thanks for letting us know.

kim
« Last Edit: March 24, 2016, 03:09:05 pm by KimInTheForest »
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 lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: SAD NEWS
« Reply #2 on: March 24, 2016, 03:02:07 pm »
It's always sad to hear, cured or not cured, hep C-related or not, when we lose one of our own, we lose a part of ourselves. Liver cancer sucks and we need to reach people BEFORE they have cirrhosis.

Thank you Lee.
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 Philadelphia

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  • Posts: 1,157
  • It only looks like I know what I'm doing
Re: SAD NEWS
« Reply #3 on: March 24, 2016, 03:49:21 pm »
Oh. That is so sad. My thoughts are with her family and friends. She was such a gracious presence here on the forum.
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 Lynn K

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  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: SAD NEWS
« Reply #4 on: March 24, 2016, 03:53:33 pm »
I found her daughter Bobbi Madden. She has a link posted to a go fund me page for Debbie Madden if anyone is interested.

So sad lo lose her she was so upbeat in spite of her bad news. Her last post here was to wish us all a happy new year.

My heart is broken  :(
« Last Edit: March 24, 2016, 04:30:16 pm by Lynn K »
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 MsBrat58

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  • Posts: 26
Re: SAD NEWS
« Reply #5 on: April 23, 2016, 02:10:03 pm »
I posted under post tx but read a study about this very problem post treatment. Do you have info about this. It was on medscape today....

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: SAD NEWS
« Reply #6 on: April 23, 2016, 02:36:40 pm »
Hi Ms

 Not sure what you saw on the article I don't have access to that website I have see some articles on that subject however.  The thing is for those of us who have cirrhosis even though we are cured we are still at increased risk of developing liver cancer which is why we need to be checked every six months to monitor for the early signs of liver cancer.

Being treated does not increase risk, being cured reduces risk however having cirrhosis we are always at risk.

Sadly this is what occured here.

Edit:

Ok I did find a medscape article from 4/15. It does seem they are commenting on the idea that the reduction in inflamation may be a factor but HCC primarily is occurring in patients who had previous liver tumors. For those patients with no prior history of HCC they were child B and C cirrhotics for the most part.

http://www.medscape.com/viewarticle/862041
« Last Edit: April 23, 2016, 02:54:17 pm by Lynn K »
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 Lee

  • Member
  • Posts: 31
Re: SAD NEWS
« Reply #7 on: April 23, 2016, 03:18:43 pm »
Debula told me she had cirrhosis before she started harvoni. I believe she went through one previous treatment and failed, so she was on a 24 week regimen of harvoni versus 12. She did end up beating the Hepatitis - she had cleared it completely - but it was too late, I guess, because when she went for her regular 6 month liver scan, they founds cysts. It was all downhill from there, and she was gone within a couple more months. The thing that is scary about this is that you hear a lot of health care providers will not authorize harvoni until people already have cirrhosis, and as we just found out, that could be too late.
Female
Infected mid-1970's
Diagnosed 2013
Viral load prior to treatment: 6.6 million
Genotype: 1a
Started Harvoni: 4/20/15
Four week viral load: <20 too low to quantify
Eight week viral load: undetected

Offline MsBrat58

  • Member
  • Posts: 26
Re: SAD NEWS
« Reply #8 on: April 23, 2016, 04:38:53 pm »
Thank you so much Lynn for clarifying that article. I am not in either of those categories. Thank you again for everything you do on this site.

Offline Lynn K

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  • Member
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  • Get tested, get treated, get cured, fight Hep c!
Re: SAD NEWS
« Reply #9 on: April 23, 2016, 05:00:24 pm »
Hi Lee

This is Debula's signature

 80's DX: NonA,B
Non responder to Interferon
3/6/2015-GT 1a
VL-1920000 IU/mL
FibroSURE: Fibrosis stage F4 (0.79)
                  Necroinflammat activity A3 Severe (0.75)
AST 88,  ALT 120, Platelets 73
4/16/2015-Started Harvoni (24 weeks)
5/13/2015-4 weeks AST 26, ALT 36 
5/22/2015-5 weeks  VL UND
6/17/2015-9 weeks  VL UND AST 28 ALT 40
7/31/2015-15 weeks VL UND AST 27 ALT 39
9/22 Diagnosed with HCC
10/1-EOT
10/29-SVR4
12/23-SVR12
I AM HEPC FREE! :)

I am between being saddened by her loss and concerned for myself and others like her and I.

I was treated 4 times for hep c 3 times interferon based and also 12 weeks Sovaldi/Olysio  but relapsed on that one.

I was diagnosed with cirrhosis over 8 years ago. So far I count myself as very lucky to have made it this far especially in light of the medscape article and our sad loss of Debula

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 MsBrat58

  • Member
  • Posts: 26
Re: SAD NEWS
« Reply #10 on: April 23, 2016, 05:23:30 pm »
Prayers for her. Horrible disease.

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: SAD NEWS
« Reply #11 on: April 24, 2016, 11:40:47 am »
My HEP blog tomorrow will address this, and as I did my research, it was very much with Deb in mind. Honestly, I can't make the connection between her cancer and her treatment, except perhaps the speed of it. Cirrhosis is the risk factor here.
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 MsBrat58

  • Member
  • Posts: 26
Re: SAD NEWS
« Reply #12 on: April 24, 2016, 02:04:55 pm »
Thank you as i am concerned .


Offline MsBrat58

  • Member
  • Posts: 26
Re: SAD NEWS
« Reply #13 on: April 24, 2016, 02:06:50 pm »
Also, i read an article about hepc and neck and throat cancer connection.

Offline lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: SAD NEWS
« Reply #14 on: April 24, 2016, 03:27:38 pm »
The cancer I can address - all in all, hep C is associated with risk of several cancers, including lymphoma. People with hep C have a higher risk of death from all major causes (esp cancer, stroke, and heart disease), and on average die 15 to 20 years earlier than people without hep C. Successful treatment reduces our risk, basically bringing it back to if we hadn't had hep C.

Nothing in this new data from EASL changes my mind about treatment. However, it does change my thinking about how people are monitored, and it underscores the need to treat everyone BEFORE they get to cirrhosis.
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 MsBrat58

  • Member
  • Posts: 26
Re: SAD NEWS
« Reply #15 on: April 24, 2016, 07:34:55 pm »
Thanks for interpreting it for me and everyone.

Offline jakas

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  • Posts: 265
Re: SAD NEWS
« Reply #16 on: April 25, 2016, 04:13:27 am »
Just read this, so so sad, RIP Debula
M/57 yrs.
Contracted (Unknown) 10-20-30 yrs back ??
Treatment Naive
Geno 1a&1b
VL  17+ million
ALT 200+, AST 170+
Fibroscan F4 ( 26+ kpa ) on 8th Dec. 2105
Started Tx 11th Dec.2015 ( 12 wks. Gilead Harvoni)
7/1/2016 :Viral Load|<25 UND.
23/1/2016: ALT 34 , AST 35, ALP 143
8 week NO labs done
EOT:03.03.2016 ( 84 pills eaten )
ALT 26, ALP 124, BIL .54
V/L <25 UND E.O.T.
4 weeks E.O.T. V/L UND::: SVR 4
SVR 12 and  SVR 24 on 16/8/16
Fibro 24.5kpa 23/05/16
SVR 63 05/17
Fibro 17.03.2020 kpa 6.3

Offline FutureThinker

  • Member
  • Posts: 711
  • Onward and upward!
Re: SAD NEWS
« Reply #17 on: April 25, 2016, 12:42:28 pm »
Agree, Luncinda.  We have to take this new flood of information cautiously, it's going to be like this for awhile as researchers have more and more of us from which to analyze data. FT
Treatment naive
Likely contracted mid-70s
Diagnosed 1a, 2011
F1-2
Harvoni X 12 weeks, completed 5/17/16
Pre-treatment: VL 3 mil, AST 64, ALT 84
4 week labs: VL 30, AST 21, ALT 14
8 week labs: VL UD!!!, AST 22, ALT 16
12 week labs: VL UD, AST 23, ALT 14
2 wk EOT: VL UD
12 wk EOT: VL UD, AST 22, ALT 13 =  SVR 12! Yay! 
Last hep appointment: VL UD, AST 19, ALT 12 = SVR 39! I AM DONE!

Offline Lynn K

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  • Member
  • Posts: 4,543
  • Get tested, get treated, get cured, fight Hep c!
Re: SAD NEWS
« Reply #18 on: April 25, 2016, 12:51:14 pm »
I hope this new data will persuade insurance companies they need to treat patients with lower fibrosis scores and not wait until they get to F3 and F4 and are now at risk of HCC because of being forced to wait.
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 lporterrn

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  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: SAD NEWS
« Reply #19 on: April 25, 2016, 01:24:51 pm »
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 I fightis thetitis

  • Member
  • Posts: 129
Re: SAD NEWS
« Reply #20 on: April 26, 2016, 05:59:52 am »
I am so saddened by this news. Debula and I traded PM's and when there was no response on the last one I thought of her every time I logged on here.
I even started a thread based on her situation to monitor a Harvoni HCC connection.
She was so upbeat even in the midst of such sad news.
I had read everyone of her post and she was having liver pain towards the eot that got worse. We were both F4 and A3 with abdominal pain so I had a connection with her journey.
DARN!
I have two weeks left to complete my 24 weeks on Harvoni, my SE are kicking in hard and I will say a prayer in her memory with every last pill I take and power through treatment.
RIP Deb..
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline I fightis thetitis

  • Member
  • Posts: 129
Re: SAD NEWS
« Reply #21 on: April 26, 2016, 06:14:04 am »
My blog on this issue: https://www.hepmag.com/blog/hepatitis-c-antivirals-HCC-recurrence-risk-hep-b-reactivation

Lucinda, this article deals with the exact question/thread I asked months ago. I'm hopeful time will tell if there is an increased risk and or connection. I asked the question bc when I started tx my liver pain increased during week 2. Became intermit and now I rarely have any. My Ultra S from feb was all clear so in my case, for now there does not appear to be a Harvoni/hcc connection.
Thanks for doing this!
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline Bob V

  • Member
  • Posts: 231
Re: SAD NEWS
« Reply #22 on: April 27, 2016, 03:20:26 pm »
This is very sad news.
Male 64
Dx hep non AB 1972, Hep C 1991
GT 1A
VL 3.7m (pre tx)
Liver B 1992, unremarkable
Liver ultrasound 2014, normal
Treatment Interferon 90's x2 failed
Started Harvoni 12/08/2014 (12wks)
Finished Harvoni  3/1/15
5wk lab detected <15
8wk lab UND
EOT lab UND!
12wk post lab UND!
24wk post lab UND!
58wk post lab UND!

Offline Pete

  • Member
  • Posts: 110
Re: SAD NEWS
« Reply #23 on: April 27, 2016, 09:45:08 pm »
This is just awful news. Condolences to family and friends.

Considering those of us with cirrhosis are at high risk, it is prudent to learn everything regarding an anti cancer life style.  Making improvements in diet, exercise, mental / spiritual health, and paying particular attention to diet and investigating alternative cancer therapies could just make a difference.
 
Even after I learned I had Hep C, I did not make many positive changes to my lifestyle.   I continued to enjoy alcohol when I felt like it, kept smoking, and paid little attention to diet.  Everything changes when you get the cancer diagnosis, it is a major wake up call. 

Best,
Pete

 


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