12 Years a Blogger

This post will be my last one of 2019 and it marks my twelfth year writing this blog. This blog has opened doors to so many other advocacy activities and I am grateful for those opportunities.

I had some wonderful advocacy opportunities this year.

I continued to blog for Globeathon. My latest post was advice on Holidays Past .

I have become more active as an ASCO member, too. In June, I spoke with Dr Elizabeth Dickson at the ASCO Annual Meeting in Chicago on the needs of gynecologic cancer patients (http://womenofteal.blogspot.com/2019/06/asco-reporting.html). And in late September, I traveled with other ASCO members to ask Congress for support of three bills that could impact the lives of people diagnosed with cancer (http://womenofteal.blogspot.com/2019/10/asco-advocacy-summit.html). I also became the patient representive on ASCO's  Clinical Practice Guidelines Committee and the Social Media Workgroup.

I continue to  serve on the Scientific Review Board at Rutgers Cancer Center of New Jersey and am also a patient advocate on the Community Advisory Council. In September, I presented my story as an ovarian cancer survivor at the Gynecologic Cancer Awareness event at RCINJ as well as to a class of social work students at Rutgers University. 

Working with other Twitter Cancer Community leaders and social media experts,  I helped author Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities 
JCO Clinical Informatics  https://ascopubs.org/doi/full/10.1200/CCI.18.00124


I also continued to co-moderate the #gyncsm Community on Twitter chats with Christina Lizaso and covered some really important topics such as  Maintenance therapies, PARP inhibitors and the origination of high grade serous ovarian cancer. 


I look forward to seeing what 2020 will bring to my advocacy, this blog and the future of ovarian cancer research. 


Dee
Every Day is a Blessing!

Holiday Wishes

I want to wish my followers and friends the Happiests of Holidays. Whether you celebrate Christmas, Hannukah or Kwanzaa may this season be one of Peace, Love and Light.

 

Every Day is a Blessing! 

Dee

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:

Cancer.net https://www.cancer.net/

NCI Cancer Types https://www.cancer.gov/types
American Cancer Society https://www.cancer.org/cancer.html

Best Ovarian Cancer Information Sites:

Foundation for Women's Cancer   https://www.foundationforwomenscancer.org/
NCI Ovarian cancer site https://www.cancer.gov/types/ovarian
American Cancer Society https://www.cancer.org/cancer/ovarian-cancer.html
OCRA https://ocrahope.org/


Best Support Platforms:
Online Membership required
Inspire (OCRA) https://www.inspire.com/groups/ovarian-cancer/
Smart Patients https://www.smartpatients.com

SHARE  https://www.sharecancersupport.org/
LiveSTRONG https://www.livestrong.org/we-can-help
Cancer Support Community https://www.cancersupportcommunity.org/online-cancer-support
Survivorship Toolkit https://www.sgo.org/clinical-practice/management/survivorship-toolkit/ 
Support Connection https://supportconnection.org/

Best Hereditary Cancer Information
FORCE https://www.facingourrisk.org (Includes Peer support)
Sharsheret https://sharsheret.org/
National Society of Genetic Counselors http://aboutgeneticcounselors.com/

Treatment Guidelines and Information
NCCN : https://www.nccn.org/patients/guidelines/ovarian/index.html
CA-125 Information https://www.foundationforwomenscancer.org/wp-content/uploads/FWC-CA-125-Levels-Your-Guide.pdf

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. 

Olaparib:Lynparza

2014 
FDA Approval Summary: Olaparib Monotherapy in Patients with Deleterious Germline BRCA-Mutated Advanced Ovarian Cancer Treated with Three or More Lines of Chemotherapy. https://www.ncbi.nlm.nih.gov/pubmed/26187614

2017
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.
 https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-olaparib-tablets-maintenance-treatment-ovarian-cancer

Prescribing info
https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/208558s000lbl.pdf

Niraparib:ZEJULA

2017
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.
https://www.fda.gov/drugs/resources-information-approved-drugs/niraparib-zejula

Here is additional information from an article in the AACR Journal
https://clincancerres.aacrjournals.org/content/24/17/4066

2019
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.
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-niraparib-hrd-positive-advanced-ovarian-cancer

Rucaparib: Rubraca

2016

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.

https://www.fda.gov/drugs/resources-information-approved-drugs/rucaparib

2018
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.
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-rucaparib-maintenance-treatment-recurrent-ovarian-fallopian-tube-or-primary-peritoneal

This NCI  blog post PARP Inhibitors as Show Promis as Initial Treatment for Ovarian Cancer pulls together the use of PARPs for initial treatment.
https://www.cancer.gov/news-events/cancer-currents-blog/2019/parp-inhibitors-ovarian-cancer-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.

Dee
Every Day is a Blessing! 

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.

Dee
Every Day is a Blessing!

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.

Dee
Every Day is a Blessing! 

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:

Bloating, 

Feeling Full quickly, 

Frequent Urination, 

Abdominal/ Pelvic Pain, 

Fatigue

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! 

Dee
Every day is a Blessing!