Our Way F>>ward - Survey Summary

Between April and May of 2017 a survey was conducted online on behalf of TESARO, Inc. by the Harris Poll. This One Way Forward survey included 254 women living with ovarian cancer and 232 physicians who treat ovarian cancer patients. The survey was developed with input from OCRFA and NOCC.


Here are some highlights from the survey:

• 53% of the women said their diagnosis had a severe or very severe impact on their lives.                                                           
• 87% of the women who had experienced a recurrence said the thought of cancer returning was overwhelming 
• 34% of the health care providers were unsure if or did not feel that they give their ovarian cancer patients all the information they need  about Ovarian Cancer

Most interesting to me was the survey results when it came to communication.

• 91% of health care providers said they discuss expectations of treatment often or at every visit while 40% of the patients reported they had the discussion.                                                      
• 69% of health care providers said they discussed recurrence often or at every visit while  38% of the patients said they discussed recurrence often or at every visit.
  

It appears that we have a ways to go to make sure patients have the information and support we need, when we need it most. 


You may find additional information on the website https://www.ourwayforward-oc.com/

Dee
Every Day is a Blessing! Thank you TESARO for researching the needs of the ovarian cancer community.  

 

NJ/PA Spring Walks: NOCC, Sandy Rollman

 April 22, 2017 
13th Annual Sandy Sprint and SuperHero 5K/10K and Canine Sprint
Paine Park, Philadephia, PA
8am
Registration: http://srocf.convio.net/site/TR?fr_id=1040&pg=entry


May 6, 2017   
NOCC New York City and New Jersey Chapters’ 2nd Annual Tri-state Run/Walk
to Break the Silence on Ovarian Cancer®

11:00 AM  

Liberty Park,
1 Audrey Zapp Drive
Jersey City, NJ 07305

Registration: http://runwalk.ovarian.org/tristate 


If you have an ovarian cancer  walk / event you would like me to share on this blog please e-mail me the information. 
 
Dee 
Every Day is a Blessing!  

NJ Ovarian Cancer Awareness Month Events

September is National Ovarian Cancer Awareness month and Gynecologic Cancer Awareness Month. You can raise awareness and funds for research by taking part in one of these events held throughout the state of NJ. Organization's whose events are featured in this post include: Janice Lopez Ovarian Cancer Foundation, Kaleidoscope of Hope Ovarian Cancer Foundation, The NOCC New Jersey Chapter and The Teal Tea Foundation.

If you are organizing an  event in NJ please e-mail me and I will include your information in this post.

Dee
Every Day is a Blessing!

Janice Lopez Ovarian Cancer Foundation 
Sunday Sept. 25,2016

3rd Annual Concert for a Cure - The Encore Orchestra of NJ

Purchase tickets online at http://www.jlocf.org/

~~~~

Kaleidoscope of Hope Ovarian Cancer Foundation Events:



Sunday, Sept. 18, 2016 - The Gail MacNeil Morristown Walk
Loantaka Brook Reservation, 468 South St. Entrance, Morristown, NJ
 DOGS WELCOME! 
 
Saturday, Sept. 24, 2016 -  Avon Walk
On the Boardwalk at 600 Ocean Avenue, Avon-by-the-Sea, NJ
Sorry, no dogs allowed - Special Passing The Torch presentation  (see below)

Sunday, Sept. 25, 2016 - The Diane Castle Lyndhurst Walk -
Richard W. DeKorte Park,  Valleybrook Ave., Lyndhurst, NJ
Sorry, no dogs allowed

Online registration : http://kohnj.org/walkathon.html

~~~~~
 
National Ovarian Cancer Coalition-NJ Chapter Events:

Wednesday, Sept. 7, 2016
Sky Blue FC / NOCC Night

Buy tickets on this website:
www.tiny.cc/GroupPortal
(CASE SENSITIVE) password: skybluenocc

 Friday, Sept. 9, 2016 
Music

 Sunday, Sept. 25, 2016
Mayor's 5K Run/Walk 

Registration 
http://walkforovariancancer.com/ 

~~~~ 
 
Teal Tea Foundation 

Sunday Sept. 18, 2016 

Color Me Teal Run/Walk 
Registration: https://www.eventbrite.com/e/color-me-teal-runwalk-tickets-26665500229

Spring Ovarian Cancer Awareness Walks

It's never to early to plan how you can help raise awareness and funds for ovarian cancer research. Here is information on two ovarian cancer awareness and fundraising events taking place in my area this spring.

1st Annual 5K Run/Walk to Break the Silence
NOCC NY + NJ 
April 2, 2016
Liberty State Park
Click here to register. Can't make it donations are accepted.

Sandy Rollman Ovarian Cancer Foundation 
12th Annual Sandy Sprint 5K/10K and Canine Sprint
April 23, 2016
Philadephia Museum of Art
Click here to register. Can't make it register as a Sleepwalker!

 

I appreciate the work our local awareness organizations do to raise awareness and especially the funds they raise to support ovarian cancer research.

Dee
Every Day is a Blessing!

Awareness Campaigns

There are many local and national organizations that are helping to raise awareness this month and every month. Here are some examples.

NOCC

Share this poster as a way to raise awareness. 

Go to the website ( http://ovarian.org/earlierawareness) , print out the poster and share it.

Turn The Towns Teal®

Hanging teal ribbons on trees and post signs in towns across this country. 

Photo from Turn the Towns Teal website.

I love seeing ribbons as I drive around NJ. Check out their website for more information and put it on your calendar as something to do next year! http://www.turnthetownsteal.org/

In support of Turn The Towns Teal® , Folonari wine and Frederick Wildman and Sons will donate $10,000 to Turn The Towns Teal® for the first 10,000 selfies of people wearing teal on social media that are tagged with #turnmyselfieteal  . See http://folonariwines.com/turnmyselfieteal/ for more information. 


Teal Toes

This campaign in which women ( and some men and even pets) paint their toe nails TEAL was founded by Carey Elizabeth Fitzmaurice (1968- 20015).  It is the perfect way to start a conversation about ovarian cancer. I've painted my toes TEAL every September since hearing about it.

Do you know of other unique or fun ways to raise awareness of a gynecologic cancer?
Please let me know and I will add to this page.

Dee
Every Day is a Blessing!

Subway Series, Teal and NOCC

Help raise funds to assist NOCC in it's mission to raise awareness and support women with ovarian cancer by taking part in this exciting sporting event.

A portion (15%) of the regular price tickets sold for the 4:05 pm April 25th Yankees vs  Mets baseball game at Yankee Stadium will go to NOCC.
Please click on the image below for more information or see
--> http://nocc.kintera.org/YankeesMets.

Dee
Every Day is a Blessing!

The Jolie Buzz

Over the past few days the world has been talking about Angelina Jolie's op-ed piece in the NY Times about her choice to have a preventative mastectomy.  When I read the article  and a few other pieces I learned that Jolie's mother, Marcheline Bertrand had died of ovarian cancer when she was 56. I also learned Jolie carried the  BRCA mutation. I don't remember hearing about Jolie's mother until now.

Then the hoopla started. People supported her. People opposed her decision. People said she did it cause she was famous and it was a disservice to women. The twitter stream was alive with comments. The post "Brainless and boobless actress chooses mutilation over common sense" in particular prompted many comments from breast cancer survivors. Then there were more level headed opinions such as  "Don't Judge her..." , "Angelina and Mastectomy..." and "Opinion What Angelina Forgot to mention". 

I think much confusion is caused because there needs to be a greater understanding of what risk means when it comes to cancer. If you want to learn more about the risk of ovarian cancer there is a great video produced by NOCC in their Ovarian Cancer Education Series called Understanding the Genetic Risk for Ovarian Cancer. It features Dr Kristin Zorn. It is long but worth viewing.

All I can say is that I believe that Angelina made an informed decision that was the best option for her and celebrity or not she had every right to make the decision.

If she decides to have her ovaries removed I support her 100% but would like her to think about getting her fallopian tubes removed too- more and more research is citing that Ovarian Cancer may originate in the fallopian tubes.

Dee
Every Day is a Blessing!

OC Awareness # 13 - The Impact of OC

I realized that I did not post a #13 for ovarian cancer awareness month. Here it is.

I love this simple yet affective method of seeing the impact ovarian cancer has on the lives of women in the United States.

Thank you to whyteal (http://www.whyteal.org/awareness/)  and NOCC ( http://ovarian.org/)  of this video. 

Dee

Every Day is a Blessing! 

OC Awareness #12 - OC Organizations in NJ

Do you know someone with ovarian cancer?  Do you want to help raise awareness, funds for research or provide help for women fighting ovarian cancer? There are a number of organizations in NJ that you can volunteer with or support monetarily.

GRACEful Hope
Kaleidoscope of Hope Foundation
Janice Lopez Ovarian Cancer Foundation 
Mary Mazanec Ovarian Cancer Foundation
NOCC - Northern NJ
NOCC - Delaware Valley
The Teal Tea Foundation
Teal Wings of Hope Foundation 


I have personally worked with many of these organizations or personally know many of the founders / directors.  Each and every one of them has done outstanding work to either raise awareness, donate millions of dollars to research or have supported women who need help with transportation, bill paying , pharmaceuticals etc.You can help those fighting this disease  and do it close to home.

Dee
Every Day is a Blessing!

OC Awareness #10 - Recurrences

I thought I was doing great back in 2008 . And I was . Until I had my 6month CT scan. My CA-125 was 16 up from 11. A number which is well within the range of a normal result. But the scan showed cancer on my spleen and liver. I had recurred two and a half years after finishing my initial treatment . Eighty percent of women diagnosed with late stage ovarian cancer recur.( Source: http://www.cancer.gov/cancertopics/pdq/treatment/ovarianepithelial/HealthProfessional/page6)

When a recurrence occurs within 6 months of finishing treatment the tumor is said to be refractory and the patient is said to be platinum resistant . When a women recurs after 6 months she is said to be platinum sensitive. The term platinum is used because the standard treatment for the initial diagnosis of ovarian cancer usually involves the use of carboplatin or cisplatin which are platinum chemotherapy drugs. If you are platinum sensitive you will be able to use those platinum drugs again. (Source : http://ovariancancer.jhmi.edu/treatment.cfm)

I already discussed the standard treatment for a majority of late stage ovarian cancers as surgery and then chemotherapy. There are a number of clinical trials looking at chemotherapy then surgery. This allows the oncologist to shrink the tumors before the surgery. The treatment you may be offered when you recur depends on if you are platinum resistant or sensitive you,  the location of the disease,  as well as the number and size of the lesions.

Options for women who have recurred are:
Surgery
Chemotherapy drugs
Biologic / immunotherapy
Clinical trials

In my case, I was considered platinum sensitive and I had many options open to me. I could have surgery then chemo( carbo/taxol) , chemo than surgery, or a clinical trial . This time I chose to have the surgery and then chemo. I had my liver resectioned and spleen removed in November of 2008 and finished chemotherapy April 2009. I have been disease free since then. This plan worked for me but another woman in consultation with her doctor might have chosen a different path for treatment.

There are excellent online resources ( NCI, OCNA  for women who have recurred including these brochures:
Ovarian Cancer Resource Guide for Women with Recurrent Disease- NOCC
The Patient Guide to Living with Ovarian Cancer - The Cancer Support Community ( formerly known as The Wellness Community)

Dee
Every Day is a Blessing!

Shannon Miller is a Survivor

Thank you NOCC and Shannon Miller for this video.

Dee
Every Day is a Blessing!

BEAT comes to the US

Back in February of this year I wrote about the BEAT Campaign in the UK which is the awareness campaign for OVACOME. ( Bloating, Eating , Abdominal , Talk)

I just knew it was a catchy way of remembering symptoms. OCNA, NOCC, GCF and OCRF launched a "Recognize the signs & BEAT Ovarian Cancer Campaign" ( Bloating, Eating, Abdominal , Trouble) for September , Ovarian Cancer Awareness Month in the US. See the poster above.

I hope to hear that the BEAT campaign has made a difference in raising awareness of the symptoms of OC. Women need to know what symptoms to look for- and remember all women are at risk for OC - young, middle age and mature.

Dee

Every Day is a Blessing!

Wylers Light - Supporting NOCC

Jelsert , the people who make Fla-Vor-Ice and Wylers, is supporting the National Ovarian Cancer Coalition by placing the NOCC seal and contact information on all its packages of Wylers Light. A portion of every purchase will go to support the NOCC and its mission. There a lots of flavors in canisters and single paks.

Looking forward to seeing more products displaying TEAL!

LiveSTRONG
Dee
Every Day is a Blessing!

Some Good Things and New Information

I'll begin with a new piece of information and then get in to the good things that are happening.

New Ovasure Information:
It has come to my attention through a posting on the Ovarian Cancer Alliance Support Community that the new OVASURE ( Yale blood test ) being used by LabCorp is not meant to be used by women without ovaries. This test looks at the levels of 6 markers, in addition to CA-125, found in the blood. ( I wrote about this in June and July . ) It was previously recommended for women at high risk and those at risk for a recurrence.

So I checked Labcorp's online information and it has now changed to include this line
"OvaSure™ is not indicated for a patient who is currently undergoing chemotherapy, who has had both ovaries removed, who is pregnant, or who is lactating. "

Since many women with ovarian cancer have their ovaries removed they can not use this test to indicate a recurrence. Guess we are still stuck with the CA-125 test for those of us without ovaries. Glad I didn't spend the $200 to have the test done. It might have just confused my follow-up care. More research is needed!


Edison Will Turn Teal!

Along with Chuck Lopez, I will be hanging teal ribbons again this year in my town Edison, NJ. Mayor Choi is hoping to have a press conference during the first week in September in which he will read the Ovarian Cancer Awareness Month Proclamation. Thanks to Jerry Barca, the Edison Communication Director and the Mayor's Assistant , Lori Williams for all their help with this. The Turn the Town Teal Campaign is sponsored by the Kaleidoscope of Hope Foundation, the northern NJ National Ovarian Cancer Coalition and Atlantic Health.

Woodbridge will be Teal too!
As a Board member of Kaleidoscope of Hope Foundation, I was asked to speak at the Woodbridge town meeting on September 2nd about Turn the Town Teal and Ovarian Cancer. Chuck Lopez and a number of volunteers will hang the ribbons on Main Street in Woodbridge, NJ.

Wachovia Highland Park Branch to display Ovarian Cancer Awareness Information!

In September my local branch of Wachovia will provide space for me to display information about ovarian cancer and symptom cards in the lobby. A huge thanks to branch manager Valerie for providing me this opportunity.


St Paul's Bulletin with Ovarian Cancer Information

The Sept 7th weekly bulletin for St Paul the Apostle Church in Highland Park will contain information about Ovarian Cancer. Thanks Dee C for finding space for this important information.

I've raised $760 for the LAF!

Only $240 to go to reach my goal of raising $1000 for the LAF. The team 1 Reason lead by captain Kevin Walty has raised over $3000 so far. With a few days yet to go I am positive we will raise even more. To donate please visit- http://philly08.livestrong.org/dees
I can't wait until Sunday to walk with my LAF friends.


So although I have not posted recently I have been a busy person.

LiveStrong and remember that Every Day is a Blessing.

Dee

Take The Right Path - New CA-125 website

I received the following in an e-mail from NOCC :

"Fujirebio Diagnostics, Inc., an NOCC sponsor, launched the website Take the Right Path, http://taketherightpath.com/ to communicate to patients, family members and healthcare professionals about CA125. The site features profiles and testimonials of women surviving ovarian cancer. These profiles were provided by NOCC volunteers across the country."

You need to choose the US or Other Country on entering the site. I found the site to be informative with good links to information about Ovarian Cancer and reliable sources.
The site also provides information regarding HE-4 / CA-125 which has been shown to be a better predictor of Ovarian Cancer.



Dee
Living Well and enjoying each day!