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Author Topic: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer  (Read 19480 times)

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Offline iana5252

  • Administrator
  • Member
  • Posts: 187
Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« on: August 12, 2014, 08:57:34 am »
Hep Blogger and Forum member Karen Hoyt (karenhoyt) new blog entry shares the news that she is now living with hepatocellular cancer. She is vowing to fight it just like she has battled hepatitis C and cirrhosis. If you'd like to send her a note visit her blog entry and post a comment. We wish her all the best and have no doubt she will beat this!

Quote
Hepatocellular Carcinoma or HCC is not a common form of cancer. But, it sure can show up if you lived with Hepatitis C as long as I did. Dang it! The end stage cirrhosis did a number on my liver and my recent ultrasound led to a CT scan to take a closer look at the mass they found.

http://blogs.hepmag.com/karenhoyt/2014/08/hepatitis_cirrhosis.html

Offline CoMick

  • Newbie
  • Posts: 2
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #1 on: October 06, 2014, 02:00:48 pm »
I was diagnosed with HCC on 09-17-13, had a TACE procedure 10-08-13 and have been cancer-free since while waiting on a transplant.

I wish you the best.

Offline Bucky

  • Member
  • Posts: 341
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #2 on: October 22, 2014, 11:11:56 am »
Lucinda, Thanks for starting this room although I hate we need it.
Bucky
I HAVE SLAYED THE DRAGON.....CURED SVR24!

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #3 on: October 22, 2014, 01:05:24 pm »
Thanks for sharing hope CoMick
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 doglover820

  • Member
  • Posts: 11
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #4 on: March 15, 2015, 06:38:29 pm »
I found out I had HCV and cirrhosis in 2003, I tried all the terrible treatments, first when I found out and then again 8 or 9 years later when I heard I had liver cancer. What a shot to the gut! I can still relive it like it was yesterday. I try not to. I had chemo embolization and it held back the cancer until my transplant 1 year later. It was awful, I have never felt so bad, even the transplant wasn't as bad. Believe it or not! But after about a week I was OK. I was called up to get the transplant (2 1/2 hours away) 3 times before I really got the transplant. Some reason or another it didn't happen, too small or someone else right there more qualified then me). When I went in for the transplant finally, it was surreal. I felt like it was really not happening. I felt like someone was with me (I was hoping it was Jesus) protecting me. And not just my husband who was always there. I survived and I went home from the hospital a week later. And I felt pretty damn good. There was a lot of testing and other stuff after that wasn't great but wasn't I blessed! I still had Hep C and I still worry about going through it all again. If you can get rid of it first you'll be so much better off. I'm still so happy for Harvoni now, I was undetected after 2 weeks! I couldn't even believe the feeling.
Good Luck to Karen and CoMick. You "can" do it and good people will all try to help you through it. People really do care.
It's been 3 years now and I live just like everyone else. I just take a few pills every day.
Diagnosed 2003 with Hep C and cirrhosis but probably got hep c in the 70s
Tried Interferon and ribavirin for 6 months - no luck - 2003
Diagnosed 2011 with liver cancer and told I needed a liver transplant
Tried Telepravir and ribavirin to clear up Hep C before transplant - got bad rash and had to quit
Tried Bocepavir and ribaviran - didn't work
Got transplant in Jan. 2012 but still had Hep C
Started Harvoni and ribavirin on Feb. 11 - undetected after 2 weeks!!

Offline BubbaT

  • Member
  • Posts: 267
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #5 on: April 12, 2015, 07:20:56 pm »
Hi bloggers, have you heard how Karen is doing?
I was wanting to say hello and see how she is?
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 BubbaT

  • Member
  • Posts: 267
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #6 on: April 20, 2015, 02:15:25 am »
Hi Lucinda,

I just read Karen got her transplant and she is doing well and back home! WOW!
Amazing, God is Good!
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 lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #7 on: April 20, 2015, 12:34:23 pm »
Yes to every word you wrote BubbaT
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 Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #8 on: September 25, 2015, 04:09:58 pm »
I am on my final week of 24 week  of Harvoni and just got my MRI results back and now I have HCC (Liver cancer)  I am scared to death and would like to hear from other people that have had this diagnosis and the different treatments that they have gone through and of course the outcome
Karen's blog was sooooooooooo helpful
To the people who have had transplants, how much does the antirejection mediation cost?  I hear it is pricey.   It sounds like it is hard to qualify for a liver transplant.  It sounds like you have to be in tip top shape physically so that may rule me out. :(  So scared.  Seeing my doctor this afternoon and hopefully he will give me the right guidance
Any and all info will be very helpful to me.
This forum taught me so much already about my HepC and meds etc
Maybe I can learn more about my cancer here too

Thanks in advance
Deb
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! :)

Offline Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #9 on: December 29, 2015, 01:19:20 pm »
Wow looking at the date of my last post and I am still no closer to a treatment plan.
They have found lesions in my lungs and I need a lung biopsy to determine if the lesions are cancerous or not.  Went for one failed attempt at the biopsy a couple of weeks ago and the attending physician would not do the biopsy claiming that the lesions are too small yet they scheduled me with some other doctor that will do it.  Go figure... I am loosing my faith in Loma Linda and I would go elsewhere if I knew it wouldn't be another 3 months before they do something.
Last week I had pain, lots of pain in my liver area again but this time it was bad so I went to my family doctor who ordered another CT and the CT scan showed a hematoma which was the reason for all the pain.  Apparently blood vessels were ruptured.  Also my tumor is now 7cm (it grew 2 cm) :(
The good news is that I am SVR12 as of Dec 23,2015 YAY!!!

I have to wonder....Does Harvoni have anything do with this cancer?  I don't think so but I can't help but wonder since I was all clear until I started Harvoni.  Something to think about I guess...
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! :)

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #10 on: December 29, 2015, 11:11:33 pm »
Deb,
What a tough situation. I am concerned that you may be falling through the cracks. Have you asked your family doc if this is a normal time frame? Perhaps a 2nd opinion? Gosh, I wish I had something better to say. Or a hug to give.

As for the connection with Harvoni, it seems unlikely. However, even if it;s unlikely, I encourage you to report it to the FDA - rather than speculate, best to submit the data
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 Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #11 on: December 30, 2015, 03:36:02 pm »
Hi Lucinda
I am worried that I am falling through the cracks too!
Tomorrow is lung biopsy day (if they do it this time and are able to get a good enough sample)  Then I see the surgeon on 1/6 so hopefully we can move this along finally.
I was so happy that we caught it early and I was a candidate for resection and now I am disappointed with the whole process.

I was wondering if I should report it to the FDA thanks
(I honestly don't believe that Harvoni caused the HCC)

Will post more when I know more
Thanks to all of you for your support

Deb
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! :)

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #12 on: December 30, 2015, 06:12:55 pm »
May you be surrounded by health and peace as you go through this.
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 Debula

  • Member
  • Posts: 257
  • "Your body hears everything your mind says"
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #13 on: January 07, 2016, 03:00:43 pm »
Hi everybody and HAPPY NEW YEAR!!
Thank you all so very much for your thoughts and prayers and support.
I found out yesterday that the lung biopsy came back clear and we are moving forward with the resection next Friday!! Finally a light at the end of the tunnel. :)
The surgeon said that the tumor is located on the outer edges and I won't loose but 10% of my liver which is way better than I expected.
My pain is still pretty extreme but hopefully it will be over soon and I can start fighting my way back to health.  (I haven't been able to eat much this past week or so so my body is pretty run down)

Again, your support is really really appreciated.  What woukd I do without you guys?
Blessings to all
Deb
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! :)

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #14 on: January 07, 2016, 09:18:19 pm »
Awesome Fantastic news Deb so happy to hear this :)

Lynn
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 Max

  • Member
  • Posts: 13
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #15 on: January 09, 2016, 11:58:19 am »
Hi Deb
Good news, for sure.
We are with you and here for you.
 8) Max
EOT 11-08-2015
12 week harvoni treatment naive
Military 1974
02-21-2013
Viral load 3,920,000
Ast 82 Alt 196
06-17-2015
Viral load 6,303,615
Alt 63 Ast 51
Box liver average 9 kpa stage f2
Fibro test .76 stage f4
11-10-2015
Not detected
All numbers normal
Alt16 Ast22

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #16 on: March 01, 2016, 11:18:20 pm »
Hi Deb

Haven't heard from you since this last post how is it going?
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 Yvonne63

  • Member
  • Posts: 5
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #17 on: March 14, 2016, 11:52:03 pm »
I had a TACE procedure for HCC (2.5cm) in march 2015 at RPA. No liver transplant, started Harvoni 4 days ago.
I wish u the very best outcome for your surgery.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #18 on: March 15, 2016, 09:50:14 am »
Does anyone know how Deb is doing?
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 Lynn K

  • Global Moderator
  • Member
  • Posts: 4,544
  • Get tested, get treated, get cured, fight Hep c!
Re: Hepatitis, Cirrhosis, and Now Hepatocellular Cancer
« Reply #19 on: March 15, 2016, 08:55:42 pm »
Was wondering about that too she hasn't been around since these posts :/
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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