I saw my doctor for my regular checkup yesterday and for the first time since July, 2009 I DID NOT LOSE 1 POUND! I worked really hard watching my eating and making sure I drank a high-calorie supplement every day as my doctor recommended. When you have advanced liver disease, it's very difficult to keep weight on so this was great news and I felt good about reaching my goal. Before I was diagnosed I was overweight - moderatley so, and the treatment really packed on the pounds for me. I am a very active person, so lying in bed for months probably did not help. Some people lose weight on treatment and some gain. I was in the latter group.
I am still feeling remarkably well. Sitting in the arena watching my youngest son get his Master's Degree, I couldn't help but feel incredibly grateful for that moment. Who knew I'd live to see that day; I got a bit teary. I remember being diagnosed in January 2006 and beginning my first treatment right after he graduated from high school, hoping I'd live to see my youngest daughter graduate high school in 2009. My new goal is to live to see her to her college graduation. Each day is certainly a blessing and I never take it for granted like I used to. I find that I notice little things, enjoy the scent of a flower or the "thanks, Mom" so much more. Life is so rich and when you're healthy, you take so much more for granted. I was as guilty as anyone else.
Mother's Day is Sunday. There is simply nothing like a mother's love for her child. I think of Mary, who watched her son die on the cross. I think of the mother of Osama Bin Laden. I think of my own mother and grandmothers. And last, I think of how much I enjoy being a mother. My son posted this as his Facebook Status today:
Nope, I didn't cry. I just looked upward with gratitude. I have so much to be thankful for! So much!
Wednesday, May 4, 2011
Monday, April 18, 2011
Good information from the CDC
I just finished reading the latest report from the annual meeting of the European Association for the Study of the Liver (EASL) 46th Annual Meeting, which was held in April. Here is a link to a good site they recommended with FAQ's from the public:
http://www.cdc.gov/hepatitis/C/cFAQ.htm
http://www.cdc.gov/hepatitis/C/cFAQ.htm
Sunday, April 17, 2011
Poetry & Writing
Poetry has been my steady outlet since I was diagnosed. I've written hundreds, most of which are probably not so good. I also write a lot. Most of what I write about it how I'm feeling - it is a release to be able to put my innermost thoughts on paper. Sometimes I wad what I've written up very violently and throw it in the trash; also a great release. I love to read good poetry and stumbled upon this one, by the great Rainer Maria Rilke
Death
Come thou, thou last one, whom I recognize,
unbearable pain throughout this body's fabric:
as I in my spirit burned, see, I now burn in thee:
the wood that long resisted the advancing flames
which thou kept flaring, I now am nourishinig
and burn in thee.
My gentle and mild being through thy ruthless fury
has turned into a raging hell that is not from here.
Quite pure, quite free of future planning, I mounted
the tangled funeral pyre built for my suffering,
so sure of nothing more to buy for future needs,
while in my heart the stored reserves kept silent.
Is it still I, who there past all recognition burn?
Memories I do not seize and bring inside.
O life! O living! O to be outside!
And I in flames. And no one here who knows me.
Death
Come thou, thou last one, whom I recognize,
unbearable pain throughout this body's fabric:
as I in my spirit burned, see, I now burn in thee:
the wood that long resisted the advancing flames
which thou kept flaring, I now am nourishinig
and burn in thee.
My gentle and mild being through thy ruthless fury
has turned into a raging hell that is not from here.
Quite pure, quite free of future planning, I mounted
the tangled funeral pyre built for my suffering,
so sure of nothing more to buy for future needs,
while in my heart the stored reserves kept silent.
Is it still I, who there past all recognition burn?
Memories I do not seize and bring inside.
O life! O living! O to be outside!
And I in flames. And no one here who knows me.
Saturday, April 16, 2011
The Greenview Foundation
I want to take a moment to give props to my friend, Debbie Green. She is the driving force behind The Greenview Foundation and is on the frontline of fighting Hepatitis C. Her foundation has already funded one clinical trial and she is currently raising money for a second. One of the most important goals of the Foundation is to fund research aimed at non-interferon based treatment for HCV, which I believe is VERY important. For anyone who has undergone interferon-based treatment, it is no picnic and a large number of people quit treatment due to its debilitating side effects. I went through two rounds of the stuff and you'd have to hog-tie me to get me to do it again. It was absolutely awful, particularly the 48 week option. I honestly wasn't sure I could do it, so finding a viable alternative is essential.
She raises funds in a variety of ways, but her cookbook is a big hit. Please check out her foundation's website at:
http://www.hepcfund.org/index.html
And....consider donating to the foundation or purchasing a cookbook; her foundation is highly respected and well organized. I'm also very fortunate to call Debbie my friend, and we met through my blog.
Hats off to Ms. Debbie Green of the Greenview Foundation for Hepatitis C Research! Who says one woman can't change the world?
She raises funds in a variety of ways, but her cookbook is a big hit. Please check out her foundation's website at:
http://www.hepcfund.org/index.html
And....consider donating to the foundation or purchasing a cookbook; her foundation is highly respected and well organized. I'm also very fortunate to call Debbie my friend, and we met through my blog.
Hats off to Ms. Debbie Green of the Greenview Foundation for Hepatitis C Research! Who says one woman can't change the world?
Thursday, April 14, 2011
Novartis first-in-class antiviral DEB025 achieved sustained viral response in 76% of patients with chronic hepatitis C, new phase II study show
This information came from my friend Debbie via IEWY News:
DEB025 plus standard of care (pegylated-interferon alfa 2a/ribavirin) showed superior viral cure vs standard of care alone (p=0.008)[1]
*
A cyclophilin inhibitor, DEB025 belongs to a new class of medicines that limit hepatitis C virus replication and have the potential to reshape hepatitis C therapy
*
Phase III study with DEB025 commenced recently with previously untreated patients infected by the most common form of hepatitis C virus
Basel, – Novartis announced today that a Phase II study with the first-in-class antiviral DEB025 (alisporivir) met its primary endpoint for achieving viral cure (24 weeks after stopping treatment) in 76% of patients with chronic hepatitis C[1]. The study involved nearly 300 previously untreated patients infected with the most common form of hepatitis C virus (HCV), the genotype 1 (G1)[1].
The data were presented today at the European Association for the Study of the Liver (EASL) congress in Berlin, Germany. The findings show that 76% of G1 chronic hepatitis C patients treated with DEB025 plus standard of care (pegylated-interferon alfa 2a/ribavirin) achieved superior viral cure (known as sustained viral response, or SVR) compared to 55% of patients on standard of care alone (p=0.008)[1]. Treatment with DEB025 demonstrated a low incidence of adverse events, with discontinuation rates comparable between treatment groups[1].
“Hepatitis C is difficult to treat and current therapies are only effective in about half of patients infected with the most prevalent genotype of HCV[2],” said Stefan Zeuzem, Professor of Medicine at the Goethe University Hospital in Frankfurt, Germany, and the study’s principal investigator. “These results are exciting because a large majority of patients achieved sustained viral response with DEB025, with some who also benefited from a shorter duration of treatment compared to standard therapy[1].”
DEB025 is the first in a new class of drugs called cyclophilin inhibitors. Unlike other compounds in development that target the virus directly, DEB025 is a host targeting antiviral (HTA) that targets so-called host proteins which are essential for the replication of HCV. As these proteins play a key role in the replication of all types of HCV, DEB025 may offer an effective treatment option for a broad range of HCV forms. In other clinical trials, DEB025 has also shown effective antiviral activity against other common HCV genotypes (G2, G3 and G4)[3].
“There is a critical need for more effective drugs to treat chronic hepatitis C, and Novartis is dedicated to developing medicines that will reduce the burden of this disease for patients and physicians,” said Trevor Mundel, MD, Global Head of Development at Novartis Pharma AG. “DEB025 has a new mode of action that may stop the virus from replicating and could reshape the future approach to treatment of hepatitis C.”
More than 170 million people worldwide are infected with HCV, which can cause serious liver disease leading to cirrhosis, liver cancer, and in some cases death. HCV is a blood borne virus that predominantly affects the liver[4],[5]. As an RNA (ribonucleic acid) virus, it mutates much more than DNA (deoxyribonucleic acid) viruses. This ability to change makes it harder for the immune system to clear (or eliminate) the virus. There are six major variations of HCV, known as genotypes and labelled from G1 to G6[5].
The study presented at EASL was a 48-week, global, double-blind, randomized, placebo-controlled trial in G1 treatment-naïve chronic hepatitis C patients. It evaluated the efficacy and safety of DEB025 combined with pegylated-interferon alfa 2a/ribavirin (PegIFN/RBV) vs. PegIFN/RBV alone. The primary endpoint was sustained viral response after 24 weeks (SVR24)[1].
Transient and reversible increase in bilirubin was observed in association with the initial DEB025 loading dose[1]. A small proportion of patients (4.2%) had a transient increase in bilirubin more than five times the upper limit of normal (ULN), but this was not associated with liver damage[1].
A pivotal Phase III study with DEB025 commenced recently to evaluate the efficacy and safety of DEB025 combined with standard of care and enrolling previously untreated HCV G1 patients. Other Phase II studies are ongoing in other patient populations i.e., G1 treatment-experienced patients and G2 and G3 treatment-naive patients.
Novartis in-licensed DEB025 from Debiopharm Group(TM), an independent biopharmaceuticals company based in Switzerland, under an agreement which gives Novartis exclusive worldwide development, manufacturing and marketing rights (excluding Japan).
DEB025 plus standard of care (pegylated-interferon alfa 2a/ribavirin) showed superior viral cure vs standard of care alone (p=0.008)[1]
*
A cyclophilin inhibitor, DEB025 belongs to a new class of medicines that limit hepatitis C virus replication and have the potential to reshape hepatitis C therapy
*
Phase III study with DEB025 commenced recently with previously untreated patients infected by the most common form of hepatitis C virus
Basel, – Novartis announced today that a Phase II study with the first-in-class antiviral DEB025 (alisporivir) met its primary endpoint for achieving viral cure (24 weeks after stopping treatment) in 76% of patients with chronic hepatitis C[1]. The study involved nearly 300 previously untreated patients infected with the most common form of hepatitis C virus (HCV), the genotype 1 (G1)[1].
The data were presented today at the European Association for the Study of the Liver (EASL) congress in Berlin, Germany. The findings show that 76% of G1 chronic hepatitis C patients treated with DEB025 plus standard of care (pegylated-interferon alfa 2a/ribavirin) achieved superior viral cure (known as sustained viral response, or SVR) compared to 55% of patients on standard of care alone (p=0.008)[1]. Treatment with DEB025 demonstrated a low incidence of adverse events, with discontinuation rates comparable between treatment groups[1].
“Hepatitis C is difficult to treat and current therapies are only effective in about half of patients infected with the most prevalent genotype of HCV[2],” said Stefan Zeuzem, Professor of Medicine at the Goethe University Hospital in Frankfurt, Germany, and the study’s principal investigator. “These results are exciting because a large majority of patients achieved sustained viral response with DEB025, with some who also benefited from a shorter duration of treatment compared to standard therapy[1].”
DEB025 is the first in a new class of drugs called cyclophilin inhibitors. Unlike other compounds in development that target the virus directly, DEB025 is a host targeting antiviral (HTA) that targets so-called host proteins which are essential for the replication of HCV. As these proteins play a key role in the replication of all types of HCV, DEB025 may offer an effective treatment option for a broad range of HCV forms. In other clinical trials, DEB025 has also shown effective antiviral activity against other common HCV genotypes (G2, G3 and G4)[3].
“There is a critical need for more effective drugs to treat chronic hepatitis C, and Novartis is dedicated to developing medicines that will reduce the burden of this disease for patients and physicians,” said Trevor Mundel, MD, Global Head of Development at Novartis Pharma AG. “DEB025 has a new mode of action that may stop the virus from replicating and could reshape the future approach to treatment of hepatitis C.”
More than 170 million people worldwide are infected with HCV, which can cause serious liver disease leading to cirrhosis, liver cancer, and in some cases death. HCV is a blood borne virus that predominantly affects the liver[4],[5]. As an RNA (ribonucleic acid) virus, it mutates much more than DNA (deoxyribonucleic acid) viruses. This ability to change makes it harder for the immune system to clear (or eliminate) the virus. There are six major variations of HCV, known as genotypes and labelled from G1 to G6[5].
The study presented at EASL was a 48-week, global, double-blind, randomized, placebo-controlled trial in G1 treatment-naïve chronic hepatitis C patients. It evaluated the efficacy and safety of DEB025 combined with pegylated-interferon alfa 2a/ribavirin (PegIFN/RBV) vs. PegIFN/RBV alone. The primary endpoint was sustained viral response after 24 weeks (SVR24)[1].
Transient and reversible increase in bilirubin was observed in association with the initial DEB025 loading dose[1]. A small proportion of patients (4.2%) had a transient increase in bilirubin more than five times the upper limit of normal (ULN), but this was not associated with liver damage[1].
A pivotal Phase III study with DEB025 commenced recently to evaluate the efficacy and safety of DEB025 combined with standard of care and enrolling previously untreated HCV G1 patients. Other Phase II studies are ongoing in other patient populations i.e., G1 treatment-experienced patients and G2 and G3 treatment-naive patients.
Novartis in-licensed DEB025 from Debiopharm Group(TM), an independent biopharmaceuticals company based in Switzerland, under an agreement which gives Novartis exclusive worldwide development, manufacturing and marketing rights (excluding Japan).
Wednesday, April 6, 2011
A shocking storyline...
"Over the past decade in the United States, 35 outbreaks of Hepatitis C have been linked to unsafe injection practices in healthcare facilities" I just read this on a Hepatitis C website. I read about the hospital in Colorado where a surgical tech was abusing injectable drugs and replacing the liquid with water so the multi-dose vial appeared to have enough medication. Investigators believed that this had been going on for 10 years and had the potential to effect hundreds, if not thousands of patients who had surgery there. I do know that some patients tested positive.
I also read a 6-part series written by Meg Heckman, who acquired the disease at birth by getting a tainted blood transfusion. The blood supply was unsafe in the U.S. until 1993, so anyone who received a transfusion prior to that date should be tested.
Here's a link to Meg's story, which is very well written and compelling:
http://www.concordmonitor.com/article/228639/infected-at-birth
I also read a 6-part series written by Meg Heckman, who acquired the disease at birth by getting a tainted blood transfusion. The blood supply was unsafe in the U.S. until 1993, so anyone who received a transfusion prior to that date should be tested.
Here's a link to Meg's story, which is very well written and compelling:
http://www.concordmonitor.com/article/228639/infected-at-birth
Tuesday, April 5, 2011
Treatment failure and Hep C + Music
I'm really feeling a tug on my heart to do something for people who've been through HCV treatment that failed. It's a small percentage, especially with the new drugs that are working so well on genotype 1 (the most common in the US). The last I read is that less than 30% of people with HCV end up like me (treatment failure, no more options until liver fails and you get either 1. transplant or 2. die). But we're out here and we need support. I'm pulling together a few resources to see what I come up with.
One of my friends tweeted this the other day: *The function of music is to release us from the tyranny of conscious thought.* I'm a music lover, that's for sure and I need music in my life. Being raised in the 60's & 70's had an effect on what I like today but there are a few great new bands and one that I've come to appreciate is The Flaming Lips. One of my son's friends is a gifted musician with a good ear for music - he knows what I typically like and suggested that I try them out. So, here I will share the lyrics from my favorite song by the Flaming Lips. It's a sweet song with simple, almost childlike lyrics but it captures a piece of my heart and how I feel about those I love:
The Spiderbite Song:
When you got that spider bite on your hand
I thought we would have to break up the band
To lose your arm would surely upset your brain
The poison then could reach your heart from a vein
I was glad that it didn’t destroy you
How sad that would be
Cause if it destroyed you
It would destroy me
When you had that accident in your car
That whole thing just really seemed too bizarre
Dodging holes and telephone poles through the dash
A million to one that you would survive such a crash
I was glad that it didn’t destroy you
How sad that would be
Cause if it destroyed you
It would destroy me
When you fell in love, it was so sweet
So devoted, completely swept off your feet
Love is the greatest thing a heart can know
But the hole that it leaves in its absence can make you feel so low
And I was glad that it didn’t destroy you
How sad that would be
Cause if it destroyed you
It would destroy me
One of my friends tweeted this the other day: *The function of music is to release us from the tyranny of conscious thought.* I'm a music lover, that's for sure and I need music in my life. Being raised in the 60's & 70's had an effect on what I like today but there are a few great new bands and one that I've come to appreciate is The Flaming Lips. One of my son's friends is a gifted musician with a good ear for music - he knows what I typically like and suggested that I try them out. So, here I will share the lyrics from my favorite song by the Flaming Lips. It's a sweet song with simple, almost childlike lyrics but it captures a piece of my heart and how I feel about those I love:
The Spiderbite Song:
When you got that spider bite on your hand
I thought we would have to break up the band
To lose your arm would surely upset your brain
The poison then could reach your heart from a vein
I was glad that it didn’t destroy you
How sad that would be
Cause if it destroyed you
It would destroy me
When you had that accident in your car
That whole thing just really seemed too bizarre
Dodging holes and telephone poles through the dash
A million to one that you would survive such a crash
I was glad that it didn’t destroy you
How sad that would be
Cause if it destroyed you
It would destroy me
When you fell in love, it was so sweet
So devoted, completely swept off your feet
Love is the greatest thing a heart can know
But the hole that it leaves in its absence can make you feel so low
And I was glad that it didn’t destroy you
How sad that would be
Cause if it destroyed you
It would destroy me
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