Author Topic: SAD NEWS (Read 15216 times)

Lee · « **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

KimInTheForest · « **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

lporterrn · « **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.

Philadelphia · « **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.

Lynn K · « **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

MsBrat58 · « **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....

Lynn K · « **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

Lee · « **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.

MsBrat58 · « **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.

Lynn K · « **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

MsBrat58 · « **Reply #10 on:** April 23, 2016, 05:23:30 pm »

Prayers for her. Horrible disease.

lporterrn · « **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.

MsBrat58 · « **Reply #12 on:** April 24, 2016, 02:04:55 pm »

Thank you as i am concerned .

MsBrat58 · « **Reply #13 on:** April 24, 2016, 02:06:50 pm »

Also, i read an article about hepc and neck and throat cancer connection.

lporterrn · « **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.

MsBrat58 · « **Reply #15 on:** April 24, 2016, 07:34:55 pm »

Thanks for interpreting it for me and everyone.

jakas · « **Reply #16 on:** April 25, 2016, 04:13:27 am »

Just read this, so so sad, RIP Debula

FutureThinker · « **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

Lynn K · « **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.

lporterrn · « **Reply #19 on:** April 25, 2016, 01:24:51 pm »

My blog on this issue: https://www.hepmag.com/blog/hepatitis-c-antivirals-HCC-recurrence-risk-hep-b-reactivation

I fightis thetitis · « **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..

I fightis thetitis · « **Reply #21 on:** April 26, 2016, 06:14:04 am »

Quote from: lporterrn on April 25, 2016, 01:24:51 pm

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!

Bob V · « **Reply #22 on:** April 27, 2016, 03:20:26 pm »

This is very sad news.

Pete · « **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

Forums Index

Welcome

Author Topic: SAD NEWS (Read 15216 times)