Saturday, January 18, 2020

Sharing the Best of Cancer Communities on Twitter

Earlier this month I traveled to Houston, invited to speak at the NRG Oncology Semi-Annual Meeting during a Social Media Workshop.

I was a bit nervous but also excited to share with oncologists and other cancer professionals: what is community, how cancer hashtags were developed, how cancer communities were founded on Twitter, the benefits of cancer communities and how we can learn what patients need from these communities.

Did you know that most Twitter cancer communities were founded by patients and that many of their moderators are oncologists? Did you know that many of these communities hold regular chats?
Did you know that both #bcsm and #gyncsm have had papers published based on their community members needs and support they find in these communities.
  • #bcsm published Twitter Social Community is an Effective Tool for Breast Cancer Patient Education and Support: Patient -Reported Outcomes by Survey  ( in the Journal of Medical Internet Research in 2015 and concluded that patients perceived knowledge increased and anxiety decreased after participation in a Twitter Social Media support group. 
  • #gyncsm published in the Journal of Patient Centered Research and Reviews in an article titled, The Needs of Women Treated for Ovarian Cancer: Results from a #gyncsm Tweet Chat ( . Authors found that women felt more vulnerable and had increased emotional concerns after treatment ended while during treatment women were more concerned about side effects and physical concerns during treatment. 

I finished up my talk with these comments/recommendations.

I hope that more oncologists and patients will participate in these communities - we have so much to learn from each other.

I want to than NRG Oncology ( @NRGonc),  Dr T. Julian ( @TBJulianMD) and Dr Becca Previs (@BeccaPrevisMD) for the opportunity to share my knowledge of Twitter Cancer Communities with you.

Every Day is a Blessing!

Thursday, January 2, 2020

Beginning a New Decade

Welcome to 2020!

I wish all my readers a very Happy and Healthy New Year.

At the start of every year I always find it amazing that I am still here. In 2005 when I was diagnosed with stage 3 ovarian cancer I really wasn't sure I would make it to 2007 yet here I am. It may sound cliche but I feel very blessed.

As many of you know I do not make New Year Resolutions. Instead I make a list of things I aspire to do during the upcoming year.

In last year's list I wrote: 
  • I aspire to consistently attend yoga class.
I signed up for a yoga class at a local studio called One Yoga and a friend who was training to be a yoga instructor ( she just got certified) also invited me to her house for a few sessions. I found taking yoga was beneficial to me - better breathing, less stress and much better posture. I wish that I had started it sooner. The owner of the yoga studio I attend shared her message for 2020 and in it she said to be open to good energy, focus on the positive and keep what is good. Pretty good advice I would say .

What else do I aspire to do in 2020?  When I looked over last year's list I see a few things that have been on my list for  many years. I'll just keep them here and keep trying to make them happen.
    • I aspire to continue to support women diagnosed with ovarian cancer through this blog and the  #gyncsm  community, to share my story as an ovarian cancer survivor and to promote ovarian cancer research. (I have had this aspiration for 5+ years)
    • I aspire to travel to Maine in 2019.  ( This has been on my list since 2016. But I'll keep trying .)
    • I aspire to build an even better bond with my dog Amber so we can improve our work at the masters level in agility. (This one has also been on my list for years and as long as we have fun doing agility it will stay here.) 
    • I aspire to go kayaking.
    • I aspire to spend more time doing watercolor paintings. I tried pastels, it was one of the things I aspired to last year, and enjoyed it but I am going to change this one up a bit. This year I will concentrate my watercolor painting. My son and daughter-in-law gave me water color brushes for Christmas so I am psyched to give them a try.
    • I aspire to step away from social media for a period of time each week and make connections in person - call or visit. MaryAnne, Florence and Linda I promise to reach out soon. 

    What do you aspire to do in 2019?

    Every Day is a Blessing! 

    Monday, December 30, 2019

    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 ( 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 ( 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

    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. 

    Every Day is a Blessing!

    Monday, December 23, 2019

    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! 


    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
    NCCN :
    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!