Eleven Years of Supporting and Educating the Gynecologic Cancer Community

In 2013, Christina Lizaso and I founded the #gyncsm chat and community on Twitter/ X. This year, eleven years later, we made the difficult decision to cease hosting the #gyncsm chat. You can read more about our decision on the #gyncsm blog.  Our last chat will be Wednesday, December 11, 2024 at 8pm ET with special guest and long time #gyncsm chat supporter, Cervivor. 

 We have done so much - in addition to changing our logo through the years.

We held a total of 108 chats (including this December chat).  We covered many topics including risk factors, caregiving, parenting, working while being a cancer patient, personalized medicine, treatment side effects, how to work and communicate with your health care team and survivorship.  These chats were possible because of the many individuals, organizations and groups that supported us. 

We had support from gynecologic oncologists who volunteered their time to be our  health care moderators and others who joined the chat as guests sharing their expertise. We had researchers join us to talk about their research and new treatments available to women diagnosed with gynecologic cancers. We chatted multiple times about every gynecologic cancer including the more rare types such as vulvar, sarcomas, GTD and primary peritoneal cancer. We held two digital health fairs and invited cancer support organizations to share the resources they provide to cancer patients and their caregivers. We've talked to cancer health equity experts about how to best provide cancer health care to all women. We've had chats focused on the emotional impact of a cancer diagnosis, fear of recurrence and how to talk to your children and family about your diagnosis. We've talked with genetics counselors about hereditary cancers, genetic testing and mutations. We raised awareness of pelvic health, pre-habilitation and nurse navigators. We discussed types of advocacy from research advocacy to advocating for yourself or your loved one. We talked frequently about clinical trials from the types of trials to how to search for and enroll in a trial. Annually, we shared the latest research news from the ASCO and SGO annual meetings. And we can't forget about the insights gynecologic cancer patients provided to each other and to researchers during our chats.

Personally, I have been blessed to be part of the  #gyncsm chat. I am so grateful to have worked with Christina these past 11 years to bring support and education to the gyn cancer community. Working on the chat and sharing information has opened doors for me to expand my advocacy work. I not only meet some of the top gynecologic cancer researchers in the world but have had the opportunity to work with them. I've co-authored a book, presented at oncology meetings, and worked on SGO, ASCO and NCI committees. I also have had the opportunity to be a patient advocate on a number of clinical trials. And  I learned from the gyn cancer patients and caregivers in our community- what a courageous and motivated group. I am sad to see the chat end but so appreciate the opportunities provided to me by the chat. 

I will continue to share research information on X using the #gyncsm hashtag and our blog will remain active so that members can have access to the resources and chat transcripts. 

You can find me here and as womenofteal on X, , Facebook, Instagram, Threads and Bluesky. 

 

Dee

Every Day is a Blessing

A Teal Sister's Story - Pieces of Me, Perfectly Imperfect

I have know Kimberly Simmons-Emory for over 10 years. She is a fellow ovarian cancer survivor and amazing advocate. We met in person in 2017 and I knew she had a strong faith, loved her family and  generously gave of herself supporting other women through the Georgia Ovarian Cancer Alliance.  Recently, she published her memoir, Pieces of Me Perfectly Imperfect .

 

In her book, she shares details about her adoption, how she met her husband, found and met her sisters and faced the loss of people she loved. She poignantly shared what it felt like to be diagnosed with ovarian cancer at a young age and the friendships she formed with fellow survivors as a cancer survivor.  She highlighted her friendship with Benita, an ovarian cancer survivor. I smiled to myself as I read that section because I was blessed to have met Benita in person during a visit to Atlanta for a survivorship conference.  Kimberly did a marvelous job describing the caring Benita I knew.

I don't often read a book and underline sentences that touch me but if you picked up my autographed copy of the book you will find many underlined sections.  I hope these quotes will entice you to read  Pieces of Me Perfectly Imperfect.

"The requirement to love, protect, and guide is for the adoptive parents, other family members have a choice. In my case, I cannot recall being recognized as the "adopted" daughter ; I was Dot and Mitchell's daughter."

"We have well played tunes in our heart that make us dance to the beat, but we are occasionally interrupted because life plays its own songs."

"Sometimes we have been too hard on ourselves...We decline to see ourselves through God's eyes ...God abstracts the good, bad and ugly parts of our lives and renders every part good. "

"Change can not be controlled, but holding on to control can be changed."

"Love yields gratitude and forgiveness."

So you see this book was more than just Kim's story it offered glimpses of her faith, thoughts, emotions and advice. You will find the broken pieces of her life as well as the joys. You will see challenges, support and love. At the the back of the book you will find the  Treasured Traditions section, a place where Kimberly shares family recipes. I can't wait to try Thelma's Glorious Lemon Pound Cake.

On the book's website , Kimberly writes "I pray you will reevaluate those moments that crushed you and find beauty, courage, strength, and peace within the pieces". I hope everyone, not just cancer survivors will read this book and find the value in it that I did. 

Happy Birthday Kim and thank you for sharing yourself with all of us. 

Every Day is a Blessing!

Dee

Early Clinical Investigators - crucial to ovarian cancer research

Last week, I was invited to speak about my advocacy work and my experience with ovarian cancer during the DOD Ovarian Cancer Academy . The Academy began in 2009 through the Congressionally Directed Medical Research Program Ovarian Cancer Research Program (CDMRP  OCRP). Dr. Michael Seiden stated  “the amount of science that needs to be covered to really get a global understanding of ovarian cancer is massive...it brings special opportunities for researchers... because there’s a lot of room to make a difference, but it also requires the ovarian cancer community to work hard to recruit young scientists, young clinical researchers into the field because we need more individuals to commit their time, energy, and talent to the problem.” The Academy is a virtual career development process which provides early clinical investigators (ECI) from the US and abroad with mentors, networking and peer support.  The leaders of the Academy (Dr Ronny Drapkin and Dr Kenneth Nephew) serve as a resource and foster collaboration among mentors and early investigators. 

On Wednesday,  I shared my story as a survivor and advocate along with advocates and survivors, Katy Loewy, and Rebecca Esparza.  I was honored to be given an beautiful advocacy award from the Academy. 

 

While I can't share the research ideas presented during the Academy, many of the proposals were basic research proposals that did not involve patients in clinical trials but research that took place in the lab using different models. There was an interesting discussion among the Academy leaders, mentors and ECIs regarding the use of different ovarian cancer cell lines, mouse models and patient tissue from tissue banks. I learned that it can take over two years to develop these models and this development is not covered by the grant proposals but must be funded by other means.

On Thursday,  I took part in a mock grant review. We reviewed an early investigator's grant proposal and then presented our evaluation as we would during an actual grant review meeting. I found the research avenues taken by these early career investigators can have a major impact on the lives of women with ovarian cancer. The mentoring by experienced investigators will help to keep a pipe-line of ovarian cancer investigators full and it gives me great hope for the future. I can't thank Drs Drapkin and Nephew for this amazing opportunity.

It was a beautiful day on Thursday. That afternoon I had the chance go to the top of the Space Needle. Spectacular views!

 

What a way to end such an amazing trip. 

Dee 

Every Day  is a Blessing!

Walking Alone But With A Purpose

September is ovarian cancer as well as gynecologic cancer awareness month. Each year since my diagnosis, I commit to doing an activity related to raising awareness and funds for research. This year on Sept 8th I registered for and walked the Kaleidoscope of Hope Ovarian Cancer Foundation Walk in Morristown, NJ. Since 2006, I have been involved with KOH through walking, serving on the Board of the Foundation and donating to support research. 

It was a cool crisp September morning with a beautiful blue sky when I arrived at the park to walk. I said hello to a number Board members and other supporters I have known for years. This year, I was planning to walk with a friend who is currently in treatment for a recurrence of ovarian cancer but she was unable to join me.  As the DJ played music and the Board members welcomed everyone to the event the families and teams including dogs wearing teal gathered at the starting line.  

I waited behind a bit and then I started to walk by myself. I got passed a few times by others but I continued to walk the paved path through the woods. There was so much to see!  

There was a great blue heron that flew over, a white heron by one of the three ponds I passed,  a golden retriever puppy being trained in the open area by the pond, different types of wild flowers  trees, and fungus. The time alone gave me time to reflect. I thought how walking alone - though surrounded by lots of other people - was similar to facing  an ovarian cancer diagnosis. Even though we can have a wonderful caregiver, and support from family and friends, we face our diagnosis alone. We may discuss with our doctors treatment options but we ultimately make that final decision. We get brought into surgery by ourselves. We enter the CT machine by ourselves. We may even read our test results on the portal by ourselves. The choices we have to make are not always easy but women make the best decisions they can. 

I got about 2 miles from the start and decided it was time to turn around. I walked a short way back and ran into a friend and his son. His wife died from ovarian cancer a few years ago. It was good to catch up with them. And I thought to myself how good it is to have the support and love of family and friends when you are diagnosed with cancer even if we face so much alone.

Special thanks to my family and friends who donated over $500 in support of ovarian cancer research.

Dee

Every Day is a Blessing!

Words That Changed My Life

Nineteen years ago today I heard the words, "I'm sorry Dee you have stage 3 B ovarian cancer and I will do everything to make you well." I would not be writing this blog if not for my diagnosis. What path would my life have taken if I had not heard those words? I will never know.

On this cancerversary, I am ever grateful to the two women gynecologic oncologists who brought me through two of the toughest moments of my life - my cancer diagnosis and my recurrence. Thank you Dr Lorna Rodriguez  and Dr Darlene Gibbon for your surgical skills, for offering me a clinical trial on initial diagnosis and for prompting me to apply to attend the LiveStrong Survivors Summit in 2006. Yes, all the advocacy work I have been able to accomplish is all because of these two amazing physicians. Their support through the years has been invaluable to me. 

I am thankful too for the wonderful advance practice nurses, infusion nurses and the pharmacists at Rutgers Cancer Institute of New Jersey. They listened to my concerns, answered my questions and comforted me when I was anxious. 

When I was initially diagnosed I was tested for mutations in the BRCA 1 and 2 genes. Today we know that BRCA mutations cause 10% of the ovarian cancer diagnosed. Just this year, a study in Nature  titled Identification of potentially actionable genetic variants in epithelial ovarian cancer: a retrospective cohort study included this table of other mutations associated with ovarian cancer. 

Look at how extensive that list is today! We know so much more about risk factors and the mutations that cause ovarian cancer. Researchers have given me hope as they report at SGO and ASCO meetings  progress on the development of novel treatments that have led to FDA approvals the drugs bevacizumab, parp inhibitors and antibody drug conjugates for Folate receptor alpha + expressing tumors.

While my life has changed in so many ways, one thing has remained the same after nineteen years.  There is NO screening test for ovarian cancer. There have been many good efforts but not one test has turned out to be specific and sensitive enough to detect ovarian cancer. We have more work to do but I know the dedicated ovarian cancer researchers I have met through the years will continue working to find a test and therapies to extend life. 

Here's to seeing what the future will bring for me and all women diagnosed with ovarian cancer!

Dee

Every Day is a Blessing!

A Powerful Memoir - Between Two Kingdoms

The first time I read the writings of  Suleika Jaouad was in her the NY Times column  "Life Interrupted" . She wrote about her leukemia diagnosis and treatments.  In 2022, I shared in this blog a piece Suleika wrote for Nancy's List ( https://nancyslist.org/). That post mentioned her best selling memoir, Between Two Kingdoms , A Memoir of a Life Interrupted.  Back then I added it to my Goodreads "Want to Read" list.

A few weeks ago while browsing a bookstore in Princeton, I saw the book, bought it and started reading it.

In the first few chapters I got to know more about Suleika's family and background. She attended Princeton University, right across the street from the Labyrinth bookstore where I purchased her book. As I read further along I started to dog ear the pages. I tend to do that with books I own so I can come back and reread or share the words. As you can see, I frequently dog eared pages in this book. 

 

Suleika's story as a young cancer patient and survivor is a powerful one. She found the perfect words to describe how she felt both physically and emotionally from diagnosis , through the various treatments and as a survivor. We are thrown into a system we know nothing about so we try to learn as much as we can. We are fatigued from treatments yet we want to still "do" things.   I remember feeling how life went on for others while I couldn't get out of bed. Or that others were annoyed over someone cutting the line at the food store while I wished I could get out there to the food store. Suleika stated is as - " The world is moving forward and I am stuck." So many times as I read the book I thought to myself - " I felt that way" even though my diagnosis was different and I was diagnosed at an older age. 

" To be a patient is to relinquish control- to your medical team and their decisions, to your body and its unscheduled breakdowns. Caregivers have a similar fate." The way in which Suleika described how her diagnosis, treatment and survivorship  affected her mother, father, brother (who provided the bone marrow for her transplant) and boyfriend was especially poignant. We survivors experience the disease, tests, treatments alone - yet our family is equally affected both emotionally and physically.    

Suleika described feelings of loss - facing infertility due to chemotherapy and a bone marrow transplant. She shared the decision and the process to harvest her eggs. She was like so many young women diagnosed with ovarian cancer I have spoke who face infertility.

Especially moving was Suleika's description of the relationships that developed with other young adult  patients, in particular those who died because of their disease. " I think of how the Taj (MAHAL) embodies both love and grief. So did my friendship with Melissa . In life, I'm realizing, you don't get one without the other. "  I understand that so well with the loss of friendships that developed only because we were Teal sisters. I still miss and think about Rita Kay, Carole, Pamela, and so many more.

Suleika faced what so many of cancer patients do regarding being told we are NED ( No Evidence of Disease) and the fear of recurrence.  " The nagging voice in my head that whispered: Don't get too comfortable because one day I'm coming back".

I loved how Suleika learned to drive and took a cross country trip with her dog, Oscar,  to visit strangers who wrote her after reading her NYT column. I couldn't stop reading about each stop and the people - planned and unplanned - she met along the way . "May I be awake enough to notice when love appears and bold enough to pursue it withoug knowing where it will lead." 

As I read Suleika's website I learned she began painting while in the hospital and continues to paint. I started painting too when I in chemotherapy. She is having an art exhibit at the ART yard June 22 - September 22, 2024 in Frenchtown NJ. I regret having waited so long to read this book but I will make a point of going to see her art work. 

 This book  is a keeper and I highly recommend it. 

Thank you Suleika Jaouad for sharing your experience with all of us.

Dee

Every Day is a Blessing! 

Some Thoughts on Quality of Life , Patient Reported Outcomes and Clinical Trials

A few days ago @DrYukselUrun shared on X the ORR ( objective response Rate) and CRR (Complete Response Rate and OS (overall survival) for the  Phase 3 CLEAR trial ( combo of Lenvatinib and Pembrolizumab in advanced renal cell carcinoma).  

 In response,  @StrijbosMichiel posted "Most impressive results from the CLEAR trial: the percentage of patients that have to endure grade 3-4 toxicities....82.3% in the 2021 NEJM publication. Yes you live longer....but at a very very hefty price. "  

Deb Maskens (@DebMaskens) a kidney cancer patient advocate posted: "Please do not post Efficacy numbers without posting what is equally important to patients: Quality of Life! Not just how long we live, but HOW we live. TY" (my emphasis)

What followed was an interesting discussion about QOL when testing new treatments and how they are measured and reported.  What is tolerable for one patient may not be tolerable for another. The fatigue one patient experiences may mean they feel tired for another it may mean they are unable to move out of bed or stand to take a shower.  Trials will report the AE's (Adverse Effects) as recorded by the clinicians and investigators or another person involved in the study. Occasionally patient reported outcomes (PROs) are included as part of the trial.  At oncology meetings there is usually a slide reporting the % of patients enrolled in the trial who experienced AE's from grades 1-4, but the focus when presenting the data is usually on the ORR, PFS or OS.  

It is important that patient reported outcomes become a standard part of the clinical trial process in oncology. The FDA issues a Draft Guidance on Core Patient-Reported Outcomes (PRO) in Cancer Clinical Trials in June 2021.  The guidance includes various tools that can be used to measure patient reported outcomes in the areas of disease related symptoms, systemic adverse events, overall side effect measures , physical function and role functions. It also shows the frequency at which those measures shoe be recorded. The FDA considers PRO's( Clinical Outcome Assessments)  as part of the COA's of a trial (https://www.fda.gov/science-research/focus-areas-regulatory-science-report/focus-area-patient-reported-outcomes-and-other-clinical-outcome-assessments). 

I've been thinking about the tools to measure PROs. There is a specific one for ovarian cancer called FACT-O (Functional Assessment of Cancer Therapy – Ovarian (FACT-O). The Assessment covers physical well-being, social/family well-being, emotional well-Being, functional well-being. Patients are asked to respond to statements that have been found to be important by others diagnosed with cancer with one of 5 responses from "not at all" to "very much". What about those issues not listed in the items others found important. There are vision issues with some anti-body drug conjugates now used to treat ovarian cancer but vision is not listed. Others including myself have had dental/ mouth issues during treatment which affect QOL and may fall under other categories but dental issues are not specifically mentioned. There is no space on the questionnaire to enter concerns that are not listed.  I understand it is difficult to capture all of the patient experience in a single questionnaire. 

At the recent ASCO 24 Annual Meeting there were multiple sessions and a keynote speech about artificial intelligence (AI). Can we use AI to read text from patients for example in a treatment diary or in an open ended question on a QOL form? Could those open ended responses be read by the study team in real time - not just for study analysis- so they can be responded to quickly?  How difficult would it be to implement that analysis in all clinical trials in ovarian cancer and other cancers going forward? I don't have the an answer for these questions but I am sure their are other experts who could provide some information. I also would like to see the conclusion slide of each presentation at oncology meetings include those QOL measurements and not a simple statement that there are " no new safety signals" . What were the old signals? 

We have work ahead but patient advocates, the FDA, Pharmaceutical companies and clinicians can work together to insure the patient experience and voice is recorded and used when considering approving treatments.

I'd love to hear from those in AI about the feasibility of implementing AI analyzed textual PROs or those with other ideas on how we can advocate for a greater use of PROs.

Dee

Every Day is a Blessing !