4 Years of Blogging -

Four years ago today I started this blog. I had no idea when I started this blog that it would reach more people than my family and friends and some fellow ovarian cancer survivors in New Jersey.

Thanks to the statistics the Blogger software started keeping in May 2009, I know that my blog has reached far from the Garden State. I have also been read in Germany, Great Britain, Russia, Canada, South Korea, France , the Netherlands, Iran and Australia and I have between 1,500 and 2,200 page views a month. My most popular posts have been about the HE4 blood test, weather and test anxiety and chemotherapy drug shortages. It appears that my page view numbers have increased since I began writing more consistently about Ovarian cancer research news. Or maybe the recent jump in readership may be to my new @womenofteal twitter account. With every new post I write I supply a link to the blog. My plan in the year ahead is to keep writing about research news and to provide links to abstracts and journal articles.I guess four years later I can officially call myself a blog writer.

I thank all you for being here the past year as I have shared my personal ups and downs. Writing about the passing of my dear Aunt Dora and Uncle Bruno helped to ease the pain and heartache I felt. I also appreciate the opportunity to write about and honor women I knew (Monica, Jeanne, Jo, Gaynor, Sarah, Patty, Janet, Jayne, Ellen, Courtney) who lost their lives to ovarian cancer.

I also appreciate the opportunity to share the good news- attending ASCO, travels around the country and especially the birth of my grandson ,John, in September. What a blessing he is in my life.

I hope you have enjoyed reading my blog as much as I enjoyed writing it. I look forward to writing for you in 2012.

I wish you all a Happy and Healthy New Year!

Dee

Every Day is a Blessing!

A Memorable Christmas time

My grandson's first Christmas.
Spending the holiday weekend with my son, daughter, son-in-law, grandson and husband in a place that actually had snow on the ground.( I love snow!)
Getting the chance to see my niece, her husband and watching my great nephew D open his gift.
Well LIFE doesn't get much better than that.

So there is the explanation for my absence. We were too busy cooking , watching "White Christmas" and "It's a Wonderful Life" , playing Rummicube, and just spending time with each other. Actually, I didn't think much about cancer. Except on Christmas Eve. We had just come home from Christmas vigil mass. I sat and watched as Matt and Terry worked in the kitchen putting together the traditional 7 fish Italian Christmas Eve meal. Andy and Nick were chatting about which wine to serve with dinner and JT was asleep. I suddenly had the urge to cry, not from sadness but from gratitude to have the opportunity to spend another Christmas with my family.

I am truly blessed.

Dee

Every Day is a Blessing!

A Christmas Gift to my Readers

A gift to my readers .

IMG_1676 Sandy Mezinis 2011 (c) ANGEL IN THE KEYS

This painting was created by fellow ovarian cancer survivor, award winning watercolorist and my friend , Sandy Mezinis. You may see cards made from her paintings at Sagesse Design . They are beautiful.

Merry Christmas !

Dee

Every Day is a Blessing!

Kathy La Tour's Cancer and Christmas Blog

I love reading CureToday magazine especially their blogs. When the e-mail announcing links to the online magazine arrived in my mailbox today I headed right over to Kathy La Tour's Cancer and Christmas blog.

" The next Christmas was better and worse because it was the birth of the woman I dubbed the Crazy Christmas Mother. " I laughed to myself because Kathy was describing me during Christmas 2006. I had to go back to doing everything - outside lights, inside garland, trees , nativity, etc.

You have to read this blog if you are in treatment for cancer now or you are a few years out but especially if you are the caregiver and wonder what happened to your spouse /friend/loved one.

Heed Kathy's advice " to be easy on yourself. " because you know it is being with those you love that is what is important this Christmas not how many cookies you baked or ornaments you put on the tree.

Dee

Every Day is a Blessing!

An Early Christmas Gift-Hope Concert V

Lately , my husband and I have had a difficult time coming up with Christmas gifts for each other. So a few weeks ago when I heard about the Hope Concert V to benefit CINJ ( where I have been treated) we decided that would be a good gift to give to each other and a gift to those very people who have helped keep me alive to be here to celebrate Christmas 2011.

What a fun gift it was.

After eating a delicious meal at TEAK in Red Bank, we headed over to the Count Basie Theatre. The event was sold out. I did manage to run in to my gyn-onc and her husband and friends and the head of communication and her husband.

The Count Basie theatre is a smaller venue and our seats were perfect - end of the row , in the back but with a clear view of the stage. The show began with an introduction to CINJ through its video " What Does a Minute Hold at CINJ". I admit that I got a bit teary eyed as I saw nurses and doctors who played a roll in my treatment. And I was thrilled to see the $175,000 check presented to Dr Di Paola, director of CINJ and my friend Leanne Kochy , Director of Special Events for the CINJ Foundation. Also on stage was Ed McKenna , a CINJ Foundation Board member, who I had met a few years ago at the CINJ Gala.

Now back to the concert. The list of marvelous entertainers and musicians who donated their time included Tim McLoone and the Shirleys, Brian Fallon,Nicole Atkins, The Jersey Shore Rock-n-Soul Revue, Bobby Bandeira ( who helps organize the performance) , Gary U.S. Bonds , South Side Johnny and drum roll please .... Jon Bon Jovi! Yes, folks he is alive and well . He even joked that if he were dead then "Heaven looks a lot like New Jersey"

I apologize for the quality of the phone video.

We sang and clapped and stood and danced during the performances. I still can't decide if my favorite Bon Jovi song was "Who Says You Can't Go Home" or his rendition of "Blue Christmas". A fabulous time was had by all.

I want to send out a special Thank You to each performer , the stage hands, sound and lighting crew and the Count Basie Theater for volunteering their time and facility to support CINJ this year. There is a nice article about the concert here.

It sure was a fabulous Christmas present . Thanks Nick

Dee

Every Day is a Blessing!

Ixabepilone and Sunitinib - Pre-Clinical trial results

After producing a new cell line of chemotherapy-resistant ovarian cancer cells, researchers at the Mayo Clinic used the combination of Ixabepilone and Sunitinib to treat the cells. The Ovarian Cancer cells exhibited a 70% cell death when the combination was used. Researchers believe that the drugs activate the molecule RhoB which leads to cell death.

Drug info:

Ixabepilone - IXEMPRA is produced by Bristol Myers Squibb and is FDA approved for metastatic breast cancer. Ixempra attaches itself to the tubes inside cancer cells that are used during the replication and division of the cells.

Sunitinib - Sutent is produced by Pfizer and is approved for Kidney Cancer, GIST and some forms of pancreatic cancer. Sutent is a kinase inhibitor that interfers with cancer cell reproduction and the formation of blood vessels by the cancer cells.

Abstract of the article may be found here.

This is an interesting line of research on serous ovarian cancer . I look forward to hearing about the first human studies.

Dee

Every Day is a Blessing!

Meetings Make for a Busy Week

Have you been missing my posts? Well, it sure has been a busy advocacy week for me.

Meeting 1 - One Force to Make a Difference

One Force is a collaborative of ovarian cancer organizations in NJ whose mission is to develop synergies that will effect increased education and awareness about ovarian cancer; improved support for survivors; and better resources for survivors and caretakers. One Force to Make A Difference supports and participates in fund raising and other events that contribute to innovative, cutting- edge ovarian cancer research. We have offered symposiums in the past and during this call-in meeting we began the initial planning for the 3rd Annual One Force To Make a Difference Symposium. Yours truely will be one of the co-chairs. Lots of work ahead but all in support of women with ovarian cancer and their caregivers.

Meeting 2- Mercer County Cancer Coalition

This was the second quarterly meeting I have attended since moving to Mercer County and joining this Coalition. I wore three hats for this meeting - one as a Teal Tea Representative, one as a One Force representative and one as Me- Women of Teal blogger. I have posted on this blog about events run by Coalition There are many excellent opportunities in the county to raise awareness cancer and healthy lifestyle choices that help prevent the disease. Coalition members run cancer awareness and fundraising events and health / wellness events such as the Run for Dads which takes place each year on Father's Day to raise awareness of prostate cancer. If you live in NJ and are interested in attending your Cancer Coalition meetings check this page for more information.

The meeting was held at the new Capital Health Center in Hopewell NJ. It recently opened and the facility is bright , the people are friendly and helpful and the shops - on general and one for mothers and newborns were chock full of nice and unique gifts. Parking is free and there is even free valet parking.

Meeting 3 - CINJ Survivors Day

Well, I can't write too much about this event since we are firming up the keynote speaker and the format but this will be one CINJ Survivor's Day you do not want to miss.

I know I need to limit what I am involved in but it is hard for me to say "no " to any request that means helping others with cancer. So as exciting as it was to be asked , I decided recently to not apply to be an LAF leader from NJ and to not apply to be an advocate at the 2012 Survivorship Research Conference.

In 2012, I will concentrate on fundraising for CINJ ( more to come about this in February) , co-chairing the One Force to Make a Difference symposium in May, speaking to other ovarian cancer survivors as volunteer with Cancer Hope Network, serving as a Teal Tea Table Captain and my research advocacy work.

After all, I need time to write this blog , create a few more Quilt paintings and have fun with my family.

Dee

Every Day is a Blessing!

Cancer Survivorship Studies Are Not Created Equal

When I was at the ASCO meeting in June I attended a few survivorship presentations. I was happy to see these studies were being done especially in the area of side-effects and survivorship plans. I did wonder though why it seemed the few that I attended all talked about survivorship studies for breast cancer survivors. Cancer survivorship research is a relatively new research area and there are a large number of breast cancer survivors, so it did make sense to me that breast cancer was the first to be studied.

In 2008 there were only 177,578 women alive with a history of ovarian cancer ( diagnosed, in active treatment or cured(?) of the disease. While there were 2,632,005 breast cancer survivors. (Data is from the NCI SEER website. )

Just the other day I ran across a news article on the National Coalition for Cancer Survivorship (NCCS) website titled "Some cancers under-represented in survivorship research, study finds ". Guess what The Ohio State University study found ? Forty percent of the survivorship studies are with breast cancer survivors who make up 22 percent of all survivors. On the other hand, only 5 % of the studies are with prostate survivors who make up 20 percent of the survivor population. My initial observation in June seems to have been proven by this study.

The report printed in the Cancer Epidemiology, Biomarkers and Prevention journal also mentioned that gynecologic cancers are also in the under-represented group. I don't have access to the entire article so I can't give you the exact numbers.

So not only do ovarian cancer survivors need to advocate for more research dollars to find a screening test and better treatments but we also need to advocate for more money to study our survivorship issues. We have our work cut out for us!

Dee

Every Day is a Blessing

ASCO Blueprint for Research

"We can no longer think of cancer as one disease"

Michael P Link, President of ASCO

That is the reason why ASCO ( American Society of Clinical Oncologists) has published a blueprint to transform clinical and translational cancer research.

The ASCO Vision includes :

"Defining Cancer Based on Characteristics, Not Solely by Location in the Body, Molecularly-Driven Diagnostic and Therapeutic Development, More Robust Biomarkers, New methods of Cancer Prevention, Diagnosis and Treatment"

I also agree with the recommendation that there be more collaboration on the development of therapeutic agents, a focus on smarter, smaller more focused ( molecularly) clinical trials and the use of electronic medical records.

It is an interesting read and I highly recommend it.

Don't take my word for it, download Accelerating Progress Against Cancer at

http://www.asco.org/ASCOv2/Department%20Content/

Cancer%20Policy%20and%20Clinical%20Affairs/Downloads/Blueprint.pdf

I'm curious to see what you think.

Dee

Every Day is a Blessing.

Fertility Issues Impact Our Lives

The other day I ran across the post Sometimes you can't "save the ta-tas" on Salon.com. The subject was the decision by reality star Guiliana Rancic's to treat her breast cancer and preserve her fertility by having a double mastectomy instead of further lumpectomies, radiation and anti-estrogen therapy . Mary Elizabeth Williams, author and cancer survivor, states " And regardless of our relationship statuses or the size of your family, there’s a whole different set of unexpected feelings to deal with when you’re facing cancer, a profound change in your body and a possible screeching halt to your fertile years." .

How true. It is difficult to visibly see your body change. Learning that preserving fertility might not be possible is heartbreaking.

Women diagnosed with ovarian cancer do not deal with loosing a visible body part. Instead, we loose multiple internal organs - our uterus, fallopian tubes, ovaries, and many times our cervix. And let's not forget the removal of our omentum ( the fatty layer that covers the organs of the abdomen) during the debulking part of our surgery .

We are not all women in our 60's and 70's when we are diagnosed. Many of us are women who are diagnosed well in advance of menopause. Many of us are diagnosed at later stages which makes it almost impossible to preserve our fertility. We have surgery and are thrown into instant menopause. The joy of hot flashes with the drop in estrogen while facing the loss of our hair from chemotherapy. Even though I had two children, I mourned the loss of my fertility. I am saddened by the loss of fertility for young ovarian cancer survivors like my friend's niece , Nicole. So we are dealing with the physical effects of menopause while dealing with the emotional side of being unable to have children.

Here are a few resources that provide cancer patients with information about fertility:

• Livestrong Female Infertility web page (http://www.livestrong.org/Get-Help/Learn-About-Cancer/Cancer-Support-Topics/Physical-Effects-of-Cancer/Female-Infertility).
• Oncofertility Consortium http://myoncofertility.org/
• Women's Cancer Network http://www.wcn.org/articles/quality_of_life/fertility/overview/
• ASCO recommendations http://jop.ascopubs.org/content/2/3/143.full

Dee

Every Day is a Blessing!

RWJF Health Care Disparities Report -

Robert Wood Johnson Foundation has recently issued a Health Policy Brief appearing in HealthAffairs.org. Achieving Equity in Health discusses the health care disparities experienced by ethnic and racial minorities in the United States. Some improvements in the area of quality of health care for minorities compared to whites have been made but much work on this complex issue still needs to be done. There are still disparities in minority mortality rates as well as a higher prevalence of diabetes, stroke and preventable diseases. The report describes the causes of the disparities to be education, geography and neighborhood, environment, stress, inadequate access to health care, inability to navigate the system and provider ignorance or bias. One portion of the report noted that in 2000-2004 black women experienced 8.8 more deaths per 100,000 people than white women. Please read the report for more details.

All women are at risk for ovarian cancer and other gynecologic cancers. Many organizations are reaching out to minority women to educate them about ovarian cancer.

Here is a link to a spanish Ovarian Cancer Tutorial on Medlineplus :

http://www.nlm.nih.gov/medlineplus/spanish/tutorials/ovariancancerspanish/htm/index.htm

Also the American Cancer Society has a booklet What is Ovarian Cancer? in Spanish

http://www.cancer.org/Espanol/cancer/ovario/Guiadetallada/cancer-de-ovario-what-is-what-is-ovarian-cancer

Heart to Hearts - Educating Women in NJ

Recently I learned about a New Jersey non-profit organization called Heart to Hearts.

Its mission is to "educate women and their families about important issues that affect their health and well-being .We believe that education is the key to empowering women to make positive changes in their lives that will result in healthy lifestyles for them and their families. "

They offer programs, classes and seminars to support their mission. One program offers a comprehensive wellness evaluation from personal history , to eating types, metabolism and nutrition. They also offer classes in fitness, stress management and laughter.

Please visit their webpage ( http://www.hearttohearts.org/ ) for more information or to volunteer.

Dee

Every Day is a blessing!