Celebrating Hope and Giving Back to The Cancer Institute of New Jersey

In July of 2005, I heard the words “ You have Stage 3 ovarian cancer”. My gynecologic- oncologist at the Cancer Institute of New Jersey ( CINJ) told me that I should not look at the survival statistics for ovarian cancer because statistics are just that statistics not individuals. Then she told me she would do her best to make me well.

Well, here we are in 2012 almost seven years later and the doctors at CINJ have made me well not just in 2005 but again in 2008. Currently, I am disease free. I am certain that taking part in the CINJ clinical trial lead by Dr. Lorna Rodriguez and the outstanding treatment and follow-up care by Dr. Darlene Gibbon has made the good health I experience today possible.

In the past I have asked you to donate to other organizations in support of ovarian cancer awareness and research. This year during the month of February, Ovarian Cancer Awareness Month in New Jersey, I am asking you to directly support the ovarian cancer research that is taking place at CINJ by donating to the Cancer Institute of NJ Foundation through my personal fundraising campaign. I hope to raise $5000 so the doctors and scientists can continue their research to better understand ovarian cancer, develop new treatments and find a cure .

As a special thank-you, I will mail a note card of my painting called “Hope” to the first forty-five donors. You can see a photo of the note card on my donor page at

http://cinjfoundation.donordrive.com/event/deesparacio/ . If you prefer you may also go to that page and print out a form and mail in your donation.

Thank you in advance for your donation.

Sincerely,

Dee

PS- The relative five year survival rate for late stage ovarian cancer is 30%. )

Dee

Every Days is a Blessing!

Second Painting in my Life Quilt Series- Courage

I completed the first painting in the series I call Life Quilts last year. The series combines quilt square designs with cancer awareness colors and ribbons. The first painting is called Hope and uses teal, the ovarian cancer awareness color. I wrote about it here . I will be using that painting in a future fundraising campaign for the Cancer Institute of New Jersey . More details about that campaign tomorrow. Please check back.

Yesterday, I finished the second in the painting series. This one is called Courage and incorporates pink the color for breast cancer awareness.

I painted Courage in honor of my sister ,Roberta and also 5 friends recently diagnosed with breast cancer. Roberta faced her cancer diagnosis and treatment with Courage and she showed me the path to follow. Thank you , Bert.

Dee

Every Day is a Blessing!

Glycobiology Research

A friend and fellow ovarian cancer survivor sent me a link to the article "Attacking "bad carbs" to fight ovarian cancer" which appeared in Beaker , the Sandford-Burnham Medical Research Institute's blog. . The article reports on glycobiology research by Michiko Fukuda, Ph.D. and her team.

Glycobiology is the study of glycoproteins. Glycoproteins are molecules made up of carbohydrates and proteins. The surface of epithelial cells are protected by carbohydrates. When a cell becomes cancerous the surface carbohydrates are altered and may contribute to cell growth and metastasis. Dr Fukuda and her postdocs worked with a monoclonal antibody (HMOCC-1) that attaches itself to the surface of malignant Ovarian Cancer cells. They developed a biochemical method to determine which modified carbohydrate the antibody attached itself to. The complete research article was published in the Journal of Biological Chemistry . Click here for a link to the article.

The more we understand the structure of ovarian cancer cells the better we can develop treatments.

Dee

Every Day is a Blessing!

In One Word

Yesterday I read an article in U.S. 1 magazine about a project done by Westminster Choir College called "Giving Voice to Community". "Giving Voice to Community" is based on NPR's "Story Corps" and "Anthropological Wordsmith Picture Show". The project asks those attending Westminster Choir College concerts to be photographed with one word of their choice. Those who participate are not given any guidance as to what the word should represent. See some photos here.

That article got me thinking of what word I would choose.

The first word that popped into my mind was "SURVIVOR". But does that word make cancer the focus of my life? I admit that many times it is. I call myself a cancer advocate so I am reading about cancer, talking to other survivors , trying to raise awareness of ovarian cancer , volunteering with ovarian cancer organizations and raising funds for cancer research. That happens just about every day.

I am also a survivor who worries. This week I worried that my port might not function correctly. It functioned like brand new. I worried as I waited to see my doctor. And when her nurse practitioner came in to do the exam because my doctor had to see a newly diagnosed patient I was a bit hesitant. But then I thought to myself " You are 3 years out of surgery for your recurrence and 2 and a half years out of chemo , your CA-125 is 11 isn't it time to move on?" . The exam went well. So I am good for 3 more months.

So yes, I am a survivor. But I would choose the word

MORE

I am more than just a cancer survivor , I am a wife, mother, grandmother, friend, advocate, engineer, teacher, blogger , crocheter, painter, Disney fan & dog owner. And I hope to add more to life in the years ahead.

Dee

Every Day is a Blessing

Access to Cancer Research Should Remain Free

I often call myself a research "Hound" . I love sniffing out the latest ovarian cancer research. One of my favorite sources is PubMed which is a free archive of research papers that were published by NIH-funded scientists. Articles are posted one year from their original publication date.

When I gave a talk at the Cancer Support Network of Central New Jersey I used the site to find research papers I could present as examples. I also provided the link to my audience so that they themselves could look up the latest cancer research on their particular types of cancer. I did try to use sample research articles from the New England Journal of Medicine but that would have required me to subscribe at $169 per year for the magazine or $139 for the online version. That is a bit of a steep price to pay. Some other journals will allow you to download a pdf version of an individual journal article if you pay $35. To be fair there are usually 1-2 articles per issue that they offer the entire content online for free but they are usually not on a topic I am interested in.

US Representatives Darrel Issa and Carolyn Mahoney have introduced bill H.R. 3699 the "Research Works Act" that will make it illegal for other federal agencies to offer the same free access. And based on my reading of the text , the bill would also roll back the law that allows free access to NIH-funded articles. Now that part makes me very unhappy.

As a cancer survivor interested in understanding the research that is taking place that can affect my life I urge every member of the House committee on Oversight and Reform to prevent this bill from ever reaching a House Vote. If any of the Committee members were from NJ, I would be sending them an e-mail. Check the site and write your representative if he/she is on the committee.

Dee

Every Day is a Blessing!

Are there really that many different types of Ovarian Cancer?

After writing the last post about CA-125 I started to think about what causes the differences between ovarian cancer tumor cells. Why is cancer antigen CA-125 ,a protein , not elevated (or not being produced at the same level by my cancer tumor cells) as compared to other women who have been diagnosed at the same stage.

When I attended the ASCO meeting, I learned that there are many different subtypes of ovarian cancer. Many more than those I was initially aware of. So I put together a list of the different types of ovarian cancer.

What type/ histology is your ovarian cancer tumor?

Epithelial

• serous
• mucinous
• clear cell
• undifferentiated
• mixed epithelial
• endometrioid

Germ Cell

• teratoma
• dysgerminoma
• yolk sac tumor
• embryomal
• choriocarcinoma

Sex Cord Stromal

• granulosa cell
• Sertoli-Leydig

Check out the source of my list at

John Hopkins Pathology ( http://ovariancancer.jhmi.edu/home.cfm). The site offers excellent description of each of these different types and subtypes.

So it seems that even if you have the most common type of ovarian cancer, epithelial, your cells may be different than a friends since you may have a different sub-type. The ovarian cancer cell type along with the stage is important in determining the type of treatment you will be offered, so knowing that information is important.

I know what subtype I am. What subtype are you? Check your pathology report or ask your doctor. It is good knowledge to have.

Dee

Every Day is a Blessing!

HopeNet Social Network to be Discontinued- 1/1/12

As many of you know I volunteer with the Cancer Hope Network and speak to other ovarian cancer survivors throughout the country. For the past year I have also been the moderator of the trial online service of Cancer Hope Network known as HopeNet Social Network's Gynecologic Cancer Survivors and Supporters group. I recently e-mailed this message to members of the group.

Hello Gynecologic Cancer Survivors and Supporters Group,

Thank you so much for being part of this group. As you may have heard Cancer Hope Network’s social network, HopeNet, will be shutting down Feb 1^st 2012.

This service was begun as a trial to increase awareness and knowledge of Cancer Hope Network's core service: one-on-one matching with another cancer survivor. Analysis of the site’s usage and quantity of membership indicate it is not achieving results consistent with what we hope to achieve in our mission and vision. Therefore, the decision has been made to discontinue this aspect of Cancer Hope Network's web services. Please note, the web site is still completely active – only the HopeNet tab will be deactivated.

If you would like to stay in touch with Cancer Hope Network, please join them on Facebook or follow themon Twitter. Also, if at any point you would like to be able to speak one-on-one with a fellow cancer survivor, please contact Cancer Hope Network by email atinfo@cancerhopenetwork.org or phone at 877-HOPNET (877-467-3638) and they can try to match you with one of their support volunteers.

It has been a pleasure getting to know so many of you. You may contact me through my Blog, Women of Teal( womenofteal.blogspot.com).If you are interested in online groups you may want to join Inspire (www.inspire.com) or the ovarian cancer mailing list at ACOR (http://www.acor.org/) . I have been a member of both these groups for five years now and found them very helpful.

May the New Year bring you good health and happiness.

Wishing you all the best,

Dee

Dee

Every Day is a blessing!