Friday, September 28, 2012

A Short Break and the End of an Awareness Month

I am taking a short break from my Ovarian Cancer awareness month postings. I am visiting my daughter and her family and enjoying time playing with my grandson. Right now he is napping.
 Isn't he a cutie pie?

Anyway, fall is in the air and the end of Ovarian Cancer month is approaching. This year OC activities have increased throughout the country.There were teal toes,teal shoe laces, teal jewelry, teal buildings, teal walks,teal  dinners,teal  motorcycle rides. Many women were featured in news articles and research about the genetics of ovarian cancer was reported.Thank you to everyone who participated in any way this month to make women aware.

I'll be back in early October . I'll be doing a post on the connections between breast and ovarian cancer and it is not just BRCA.

Enjoy the rest of September.

Dee
Every Day is a Blessing!


Sunday, September 23, 2012

OC Awareness #23 - GRACEful Hope, Passionate Advocates

Last night my husband and I had the pleasure of attending the 2nd Annual GRACEful Hope Benefit for Ovarian Cancer Research at the Sport Clube Portugues in Newark, NJ.  Over the past year or so I have followed and shared information on my Facebook page about GRACEful Hope events and was honored when they asked me to attend the Benefit and to tell my story.

Before I talk about the event let me give you some background into GRACEful Hope. The Rocha family lost their wife and mother Grace to ovarian cancer in 2008, while their daughter Erika fought her battle with the same disease. They formed GRACEful Hope in memory of Grace and in support of Erika in 2009 with family and friends coming together to enter walks as a team. In 2011, Erika passed away at the age of 20.  But the family did not stop their efforts, no they continue to raise awareness and funds for research they hope will one day lead to a cure.

I have been to many ovarian cancer events from teas to walks to galas. And I have told my story many times in different venues, on TV, in a room full of women, at a walk and press conference, but last night was different. As we entered the Sport Clube I felt welcomed, at home and part of a large extended family. The event included a large family meal complete with overflowing platters of Portuguese food. The food was absolutely delicious. There was music and dancing. It was a celebration of the lives of Erika and Grace and all that  GRACEful hope had accomplished in the past year. And it was an expression of hope. Hope that the funds raised for the Cancer Institute of NJ would get us closer to finding a cure.

I am always a bit nervous before giving a talk but I had practiced and I knew exactly what I wanted to say about my journey, being in a clinical trial at CINJ and the compassionate care Dr Rodriguez and Gibbon provide. So what happened next surprised me. As I talked about my clinical trial experience and the day I heard "There is no evidence of disease". The room cheered. And I had to pause and compose myself. I know my right hand which was holding the microphone was shaking but I continued talking about my recurrence. I talked about the surgery, treatment, the allergic reaction to carboplatin and how I heard "There is no evidence of disease" and the clapping began again. And I could feel my eyes starting to tear up. And I am sure my voice cracked as ended my speech with "I still have neuropathy in my toes, forget things because of chemo-brain , get anxious waiting for blood tests and scan results but the one thing I know for sure is that with my faith , my family and the doctors at CINJ I can face whatever lies ahead."

What an emotional experience for me. Maybe it was because it was the first time I was telling my story in front of my doctors ( who spoke right before me).Or maybe it was because my husband was in the room. Or I know it sounds corny maybe it was because people who I had never met before showed me so much love and gave me so much hope.

Dee
Every Day is a Blessing!

Friday, September 21, 2012

OC Awareness #21 - HIgh Grade Serous subtypes

The article

Profiles of genomic instability in high-grade serous ovarian cancer predict treatment outcome



appeared in a recent issue of Clinical Cancer Research. Researchers at Dana Farber using a process called single nucleotide polymorphism (SNP) arrays were able to examine single units in the genetic code of tumor cells of high grade serous ovarian cancer ( HGSOC) . HGSOC cells have many genetic abnormalities including missing or extra chromosomes and  On examination the HGSOC fell into three groups based on abnormalities or loss of heterozygosity ( LOH). (Heterozygosity is having dissimilar pairs of genes.) One group had a high level of LOH and a loss of chromosome 13. The researchers found that patients in this group were slow to develop resistance to chemotherapy drugs and also were found to have the longest progression free survival.

A good review of the study can be found at
http://www.healthcanal.com/cancers/32333-Researchers-identify-three-subtypes-high-grade-serous-ovarian-cancer.html

Dee
Every Day is a Blessing!


Thursday, September 20, 2012

OC Awareness #20- Estrogen during Menopause and OC

I receive weekly e-mails from OncologyStat which provides abstracts from oncology journals.

Today there was a summary of an article from the August 28, 2012 British Journal of Cancer ( log-in required for the full article)  titled

Ovarian cancer and menopausal hormone therapy in the NIH-AARP diet and health study



The study evaluated the use of estrogen by 92,601 post-menopausal women enrolled in the the National Institutes of Health -AARP Diet and Health Study and the incidence of ovarian cancer ( 426) . The Study concluded that long term  ( 10+ year) use of unopposed estorgen and oestrogen plus progestins was associated with increased risk of oarian cancer.


Dee
Every Day is a Blessing!

Wednesday, September 19, 2012

OC Awareness Month #19- This Friday Charmed and N.E.D -the band

I know I've mentioned many different events for ovarian cancer awareness month but here are two more unique ones happening this Friday in NJ. Like shopping and Vera Bradley or Brighton then visit Charmed by Claire's in Cranbury on Friday. Love music and dancing then head over to Englewood and hear N.E.D. play .

Charmed by Claire links with Teal Tea Foundation

Charmed by Claire : Location: 33 North Main Street, Cranbury, NJ 08512 

Date of event: Sep. 21st 2012 Time of event: 10:00 AM-8:00 PM

Charmed by Claire is donating 10% of purchases to the Teal Tea Foundation. Charmed by Claire offers a wide variety of jewelry, handbags, clothing, accessories and many more whimisical gifts. Some of the featured product lines include but are not limited to Brighton, Vera Bradley and PANDORA. Gift certificates are also available for the hard to shop for girl.

For information about The Teal Tea Foundation visit http://www.tealtea.org/index

N.E.D - the Band 
N.E.D. No Evidence of Disease is a group of 6 GYN ONC's from across the USA who have formed a band, recorded all original music and played around the country to raise awareness and money for women's gyn cancers. They are releasing a documentary about the band and women's gyn cancers following personal stories also call NED. They are hosting a night out this friday 9/21 at 8P at Club 201 in Englewood NJ. It is 10 min. from the GW Bridge for any NY's. The cost has been lowered to $50 and includes an open bar, music and dancing, valet and screening of the documentary. They are amazing in their energy and passion for our cause. So if you are in the tristate area come out and meet your fellow survivors, bring your friends and support the band and women's gyn cancers. The # for tickets is 201 894 3725



Dee
Every Day is a Blessing!

Tuesday, September 18, 2012

OC awareness month #18 - Lynch Syndrome

While at the ASCO meeting in June I spent some time talking to the Myriad representatives. Myriad is the company that does the genetic testing for gene mutations, deletions and additions. I asked if the test used today is any different from the one they used to test my blood  6 years ago. There response was that they would test for LYNCH SYNDROME.

I knew Lynch syndrome associated with colorectal cancer but I wasn't sure how strong a connection there was between Lynch Syndrome and  ovarian cancer.

"Lynch Syndrome is also known as hereditary non-polyposis colorectal cancer (HNPCC), is a type of inherited cancer of the digestive tract. Lynch syndrome increases a woman's risk of ovarian and uterine cancer. It is caused by mutations in several different genes. Lynch syndrome also increases the risk of colorectal cancer, as well as cancers of thestomach, small intestine, liver, bile duct, urinary tract, the brain and central nervous system, and possibly breast cancer. http://www.cancer.net/all-about-cancer/genetics/genetics-ovarian-cancer
"
Mutations in the MLH1 or MSH2, MSH6 or PMS2 or EPCAM genes  are associated with Lynch Syndrome. Families with Lynch syndrome have two or more members who have colorectal, endometrial , ovarian or other cancer.

For more information about the test for Lynch Syndrome see this page.

Here is some interesting research on the Lynch Syndrome Ovarian Cancer link.

* Ovarian cancer linked to Lynch syndrome typically presents as early-onset, non-serous epithelial tumors.


* The clinical features of ovarian cancer in hereditary nonpolyposis colorectal cancer.



Dee
Every Day is a Blessing!


Monday, September 17, 2012

OC awareness #17- Even 8 year old girls can can have OC

A few years ago at an ovarian cancer walk in Hamilton, NJ,  I met a nine year old girl who had been diagnosed with ovarian cancer. It is rare and tends to happen in the germ cells but it does happen. It sadden me to read about such young children being diagnosed with the disease.

Here is a powerful story about a young lady from Connecticut and her experience with the disease.  Girl 8 Survives Ovarian Cancer.  

Thank you Natalie Cosman's and her parents for allowing her to share her story.

Dee
Every Day is a Blessing!