Saturday, December 14, 2019

A Virtual Gift of Resources

It is hard to believe that it has been a month since I last posted. Life can certainly keep one busy.

As I prepare for the holidays, I thought about doing something for my readers.

Here is my virtual gift to you - my choices of the best, most useful, reliable and sound sources of information and support for women diagnosed with cancer.

 Dee's Best Resources List

Best General Cancer Information Sites:
NCI Cancer Types
American Cancer Society

Best Ovarian Cancer Information Sites:
Foundation for Women's Cancer
NCI Ovarian cancer site
American Cancer Society

Best Support Platforms:
Online Membership required
Inspire (OCRA)
Smart Patients

Cancer Support Community
Survivorship Toolkit 
Support Connection

Best Hereditary Cancer Information
FORCE (Includes Peer support)
National Society of Genetic Counselors

Treatment Guidelines and Information
CA-125 Information

Wednesday, November 13, 2019

All About PARPS

Over the past few weeks many questions about PARP inhibitor use in the treatment ( front line, recurrent and maintenance) therapies for Ovarian Cancer were asked in many of the  private online groups that I participate in.  I can understand the questions and confusion because of the different PARPs available for women diagnosed with ovarian cancer - Olaparib ( Lynparza) , Niraparib ( Zejula) and Rucaparib (Rubraca) and their uses. 

In this blog post I will describe what a PARP inhibitor is, and provide all the FDA approval information and a few articles that compare the different types.

Let's start with this definition provided by the NCI.

PARP inhibitor
"A substance that blocks an enzyme in cells called PARP. PARP helps repair DNA when it becomes damaged. DNA damage may be caused by many things, including exposure to UV light, radiation, certain anticancer drugs, or other substances in the environment. In cancer treatment, blocking PARP may help keep cancer cells from repairing their damaged DNA, causing them to die. PARP inhibitors are a type of targeted therapy. Also called poly (ADP-ribose) polymerase inhibitor."

I'm more a visual person so here is a video by Dana Farber that you might find helpful.

Now lets look at each PARP and when , who and why it was approved. The FDA pages include references to the clinical trials that the approval was based on. Remember there are still clinical trials enrolling that may use a PARP in combination with other treatments. 


FDA Approval Summary: Olaparib Monotherapy in Patients with Deleterious Germline BRCA-Mutated Advanced Ovarian Cancer Treated with Three or More Lines of Chemotherapy.

On Aug. 17, 2017, the U.S. Food and Drug Administration granted regular approval to olaparib tablets (Lynparza, AstraZeneca) for the maintenance treatment of adult patients with recurrent epithelial ovarian, fallopian tube, or primary peritoneal cancer, who are in a complete or partial response to platinum-based chemotherapy.

Prescribing info


On March 27, 2017 , the U.S. Food and Drug Administration approved niraparib (ZEJULA, Tesaro, Inc.), a poly ADP-ribose polymerase (PARP) inhibitor, for the maintenance treatment of adult patients with recurrent epithelial ovarian, fallopian tube, or primary peritoneal cancer who are in complete or partial response to platinum-based chemotherapy.

Here is additional information from an article in the AACR Journal

On October 23, 2019,the Food and Drug Administration approved niraparib (ZEJULA, Tesaro, Inc.) for patients with advanced ovarian, fallopian tube, or primary peritoneal cancer treated with three or more prior chemotherapy regimens and whose cancer is associated with homologous recombination deficiency (HRD)-positive status. HRD is defined by either a deleterious or suspected deleterious BRCA mutation, or genomic instability in patients with disease progression greater than six months after response to the last platinum-based chemotherapy.

Rucaparib: Rubraca

On December 19, 2016, the U.S. Food and Drug Administration granted accelerated approval to rucaparib (RUBRACA, Clovis Oncology Inc.) for treatment of patients with deleterious BRCA mutation (germline and/or somatic) associated advanced ovarian cancer who have been treated with two or more chemotherapies.

On April 6, 2018, the Food and Drug Administration approved rucaparib (Rubraca®, Clovis Oncology Inc.), a poly ADP-ribose polymerase (PARP) inhibitor, for the maintenance treatment of recurrent epithelial ovarian, fallopian tube, or primary peritoneal cancer who are in a complete or partial response to platinum-based chemotherapy.

This NCI  blog post PARP Inhibitors as Show Promis as Initial Treatment for Ovarian Cancer pulls together the use of PARPs for initial treatment.

While this 30 minute webinar is geared toward medical professionals, it provides an overview of all three PARP inhibitors and their use.

If you have other resources you would like to share on PARP inhibitors please leave a link the the comment section and I will update this page.

Every Day is a Blessing! 

Tuesday, October 15, 2019

A Multitude of Feelings

September came to an end at here we are at almost the midpoint of October. I had been thinking about this post for quite a long time now but was unsure of how to even begin.

In a book I was reading by Elizabeth Berg one of the characters stated she had a multitude of feelings and I thought to myself that is just what I need to call my post about September.

September brings a multitude of feelings to me. I love the Fall so the crisp cooler air is wonderful.  The September of 2005 I was just getting my head around being diagnosed with stage 3b ovarian cancer. I was in 2nd / 3rd cycle of chemotherapy and I remember the windows being open and hearing kids outside playing while I rested.

September also brings out the teal ribbons and walks and other events to raise awareness of ovarian cancer. I have seen an increase in the number of buildings that turn teal so many times during September and that makes me happy.

 At one event I to took part in I told a story about how the support group at my cancer center started and I felt proud to be a part of exactly the type of support other women diagnosed with ovarian cancer need. I was so happy to talk about my gyn oncs who spearheaded my advocacy work by pointing me toward the LiveSTRONG organization.  But during the talk I also mentioned my sister who died from breast cancer in 1995. Right as I said those words I knew I was tearing up.  I had to stop take a big deep breath and continue. Yes,  all these years later I still miss picking up the phone and talking to her.

At the final KOH walk, while walking along the Jersey shore boardwalk I was overwhelmed by the fact that here it was 2019 and I was alive. I had beat the odds and in the 35% of women diagnosed with late stage ovarian cancer who lived 5 years. And I felt grateful for my family and friends and especially my "teal sisters"  who walk this cancer journey with me. They understand how years later I can still be anxious and even scared when I need bloodwork or have a doctor visit. Sure I deal with neuropathy , digestive issues and chemo brain but gosh darn it I am still here!

I was glad going into the last event a fundraiser to support research in Ovarian Cancer at my cancer center. This one was run by my friends at Graceful Hope Foundation. Seeing the support and old friends was wonderful. But there is always that time during the dinner when we have to remember those women who died due to ovarian cancer . And they mentioned Dawn. And it hit me again I shook my head up and down and teared up as I thought we lost yet another wonderful mother , sister and friend . It is sad to think back to all the women brought together by this disease who were my friends -  Gail, Lois, Patty, Sharon, Pam, Rita Kay, Carole, Janice, Corinne, Linda Ellen, Jayne and many more.

Even after so many years I experience a multitude of feelings in September.

Every Day is a Blessing!

Tuesday, October 1, 2019

ASCO Advocacy Summit

I am a patient advocate member of ASCO and last week I joined oncologists and members of ASCO in Washington, DC as part of the ASCO Advocacy Summit. We had training  sessions on Wednesday and on Thursday we visited our Senators and members of the House of Representatives.
ASCO On the Hill.

I was paired with Dr Charles Miller from Hawaii so we visited the offices of both NJ and Hawaii legislators.

Visiting with Congressman Case (Hawaii)
The bills we asked our legislators to support:
HR 913 Clinical Treatment Act - We stressed the importance of participation by Medicaid patients in clinical trials and the stumbling blocks to participation they currently experience. Meidcaid insures one-fifth of the US population. Yet only 12 states currently allow Medicaid coverage of clinical trial routine care. In those states that cover clinical trials there has been a minimal effect on overall care costs. We asked that patients on Medicaid receive coverage for routine care when enrolled in a clinical trial.

HR 3107  Improving Senior Timely Access to Care Act - Seniors on Medicare Advantage plans are  experiencing delays in  medically necessary testing and treatment due to slow prior authorization policies. Denials are sent without explanations of the determination. We asked that a uniform e- authorization be created for Seniors on these plans and that an explanation of denial be provided so that timely access to care can take place.

HR 2279 / S 2546 Safe Step Act -  Step therapy protocols requires patients to try and fail medications suggested by the payer before the medication prescribed by the doctor can be used Allowing this process in cancer care would delay access to the best treatment for cancer patients and also increase side effects and reduce quality of life. I was happy to learn that Rep Bonnie Watson Coleman (NJ)  has already co-sponsored the House Bill. 

While I did not speak to Senators Booker, Menendez or Congresswoman Watson Coleman in person their aides were very interested in hearing how these bills would effect the people in New Jersey.

You may not be able to travel to DC to speak to your legislators but if any of these bills are important to you it is easy to reach out to your Senators or Congressmen via e-mail or phone and ask them to support the bills that are important to you.

Thank you ASCO for allowing me to be the voice of cancer patients in NJ.

Every Day is a Blessing! 

Tuesday, September 17, 2019

You Need to Know That...

An estimated 22,530 women will be diagnosed in the U. S. in 2019 
An estimated 13,980 women will die from the disease in 2019. 

There is no screening test for ovarian cancer.

There are symptoms:
Feeling Full quickly, 
Frequent Urination, 
Abdominal/ Pelvic Pain, 

A women's risk of ovarian cancer in the U.S. is 1 in 7. 

The risks to develop ovarian cancer are :
Middle age or older ( half of the women diagnosed are over 63 yrs.)
BRCA mutation or Lynch Syndrome
Eastern European or Ashkenazi Jewish 
Have endometriosis
Never gave birth

Sources: CDC, American Cancer Society , OCRA

I hope you will consider sharing this information and donating to support ovarian cancer research. Thanks! 

Every day is a Blessing!

Wednesday, August 28, 2019

What Will You Do During Ovarian Cancer Awareness Month?

September is right around the corner.

Did you know that September is Gyn Cancer Awareness Month in the US? Gynecologic cancers include Ovarian  Cervical, Vaginal, Vulvar, Endometrial/Uterine, Primary Peritoneal and Fallopian Tube cancers.

During September things can get really busy as the number of awareness events increases exponentially.

On Wednesday, September 11th the #gyncsm community, which I co-founded with Christina Lizaso, will celebrate the community's 6th Anniversary. Our topic will be The Breast and Ovarian Cancer Connection. Join us and a representative from the National Society of Genetic Counselors at 9pm Eastern Time.

This year there are a number of awareness and fundraising events in NJ that you can participate in.

I already mentioned the Rutgers Cancer Institute of New Jersey Patient Education event on September 12thin the previous blog post. Check it out here.

There is an Education event sponsored by Summit Medical Group on September 7, 2019. For more info and to register  call 908-277-8889 or sign up online at: 

 As for walks I will be doing the Kaleidoscope of Hope Ovarian Cancer Foundations walk in Bradley Beach on September 28, 2019. They also hold a walk in Morristown ( Sept. 15) and Lyndhurst (Sept. 22) . Check their website ( for research they have supported.
If you would like to donate to the walk please visit

The NJ Chapter of NOCC is joining the Downtown West Orange Alliance for the  Mayor's 5 K and Walk. You can find more information at

The Teal Tea is holding Falling For Teal Fashion Show on Sept 22nd. You may find more info at .

Graceful Hope will be holding their 6th Annual benefit dinner to benefit Rutgers Cancer Institute of NJ in Elizabeth on September 28th. See their Facebook page for more information.

For my Central and South Jersey Friends , the Sandy Rollman Foundation is holding a number of events in September including an Ovarian Cancer Awareness night at the Phillies (9/12) , a General Hospital Philly events (9/14) and OvaryAct Gala (9/20). Please check their website for more information ( ).

Of course you can help raise awareness by hanging teal ribbons. See the Turn the Towns Teal website for how you can help ( ).

If you are holding an event in NJ to raise awareness or funds for research . Please let me know and I will update this post.

Every Day is a Blessing!

Monday, August 12, 2019

Gyn Cancer Education Session - Sept 12, 2019 , NJ

I am honored to have been asked to speak at this patient education program on Gynecologic Cancer Awareness on September 12, 2019. The program is free and dinner is included. See graphic for information on how to complete the required registration.

I hope to see some familiar faces in the crowd.

Every Day is a Blessing!