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 !

An Oncology Equity Summit and #ASCO24 Connections

On Monday June 3, 2024,  I had the opportunity to attend the Pfizer Oncology Health Care Equity Summit: Models for Collaboration and Community Action by Conquer Cancer's EveryGrant®. 

After being welcomed by Dr Katherine Reeder-Hayes, we heard from Dr Aida Habtezion, Chief Medical Officer of Pfizer. After reviewing the representation by race and ethnicity in clinical trials in the US, Dr Habtezion highlighted Pfizers committment to health equity in oncology. 

 

Next, a panel of presenters including advocate Sharon Rivera-Sanchez, shared their research and experience reaching underrepresented patients. 

Brian Rivers, PhD, MPH (Morehouse School of Medicine) spoke on the Deep South Community Health Advocates Network . The Network recruits and trains lay advocates/navigators as community health workers to disseminate cancer information on risk reduction, screening, survivorship and clinical trial participation. He also spoke on a project to improve access to primary care and promote education and preventive screenings for prostate cancer among rural African American men.

Shoshana Rosenberg, ScD, MPH (Weill Cornell Medical College) spoke on the unmet psychosocial needs among adults with metastatic breast cancer in New York City. She described the intervention RAISE,which uses an employment screening tool to assist  with the employment challenges experienced by metastatic  breast cancer patients treated at NYP-Weill Cornell Medicine (Manhattan) and Brooklyn Methodist Hospital. 

Kamran Ansari, MS Pfizer Oncology division spoke on Pfizer's approach to clinical trial diversity

Sharon Rivera-Sanchez, patient advocate and founder of Trials of Color spoke on the barriers to participation in clinical trials such as logistic and financial barriers, lack of awareness of trials, eligibility criteria, mistrust and the complexity of clinical trial platforms. Solutions include education, building relationships, simplifying enrollment, inclusive eligibility, and child care support. Her final remark needs highlighting!

Kenneth W. Merrell, MD, Medical Director Global Bridges, shared  the mission of Global Bridges to mobilize a global network of healthcare professionals and organizations dedicated to advancing effective diagnosis and treatment through medical education. The progam has training 50,000 Health Care Providers in 85 countries. They have provided 17 grants in oncology in the 2024-2026 cycle in Africa. 

Yanin Chavarri Guerra, MD, MSc Instituto Nacional de Ciencias Medicas y Nutricion Salvador Zubriran , Mexico spoke on the social determinants of health and disparities in cancer care for patients with metastatic breast cancer in Mexico. Patients were recruited from 3 hospitals. The barriers related to social determinants of health in patients with metastatic breast cancer may be addressed by system-level interventions.

Salvatore Alesci, MD, PhD, National Minority Quality Forum (NMQF) shared the NMQF vision to achieve a just and fair American health system that insures equitable access to optimal care. 

Andrew E. Chapman, DO, FACP, FCPP Director of the Sidney Kimmel Cancer Center at Jefferson concluded the panel discussion . He discussed how the ACES model ( Access and Care Engagement Support) can transform cancer care at the cancer center's main and regional sites.

One of the best parts of attending ASCO are the connections and reconnections I make with other advocates and researchers. This year I was able to catch a few of those connections in photos. Great times with  Barbara, Helen, Stacey, Stephanie, Ting Ting, and Annie.  

But there were also the important connections with clinicians and researchers I have worked with through the years on developing trials, the #gyncsm community, ASCO or the NCI and Cancer Hope Network. It was wonderful meeting Drs Markham and Samantha Schrager (Cancer Hope Network),  Cervical Cancer Advocate Linda Ryan and Dr Kohn, as well as Dr Dellinger, Lou, and Dizon.

I also got to reconnect with Dr Ophira Ginsburg at the President's Reception. We first met at the ASCO Annual Meeting in 2015. 

 

This post completes my reporting from #ASCO24. There will be a bit of a break posting on this blog and  from advocacy over the summer but September - Gyn Cancer Awareness month is right around the corner. 

Dee

Every Day is a Blessing! I was blessed to have not only attended but presented at ASCO this year. 

Gyn Cancer Poster Session - Ovarian Cancer posters #ASCO24

Monday was Gyn Cancer Poster day at #ASCO24.  

Here are a few posters along with their study conclusions that I found most interesting this year. 

Tumor-informed ctDNA as an objective marker for postoperative residual disease in epithelial ovarian cancer. #5544

"The present tumor-informed dPCR SV fingerprint ctDNA approach demonstrated feasibility with remarkably high detection rates pre- and postoperatively. Postoperative ctDNA levels differed substantially based on postoperative tumor residuals. These findings suggest that this personalized approach could be used to develop a dPCR SV detection assay and may have clinical utility for postoperative MRD evaluation in patients with primary advanced HGSOC."  

Through the years there has been a lot of talk regarding detecting circulating tumor DNA in the blood of patients. This study showed ctDNA could be used  as a marker in ovarian cancer .

Differences in physical and emotional distress amongst patients undergoing neoadjuvant chemotherapy versus surgery for advanced ovarian cancer: Patient-reported outcomes at diagnosis.   #5546

"Advanced OC patients have high psychosocial needs, with NACT patients reporting severe perceived symptoms on PRO measures. The PSS-10 may be a valuable screening tool for patients undergoing NACT to prioritize supportive care services."

Use of cell-free DNA from ascites to identify variants and tumour evolution in a cohort of patients with advanced ovarian cancer. #5547

This work "demonstrated the reliability of using cfDNA from ascites for molecular profiling, allowing a liquid biopsy of ovarian cancer when tumor tissue access may be restricted. This approach improves accessibility of tumour material, allowing capture of clinically actionable mutations prior to surgery or upon recurrence, following tumour evolution."

There is a difference between cfDNA and ctDNA- "The ctDNA is the fraction of cfDNA that originates from tumor cells, which comes from three sources: apoptosis, necrosis, and active secretion. While ctDNA can come from apoptosis with fragment lengths similar to healthy patients, ctDNA is more fragmented or shorter than cfDNA [20,32,33]. "  Source : NIH

Gemcitabine plus cisplatin in recurrent ovarian, fallopian tube, and primary peritoneal cancer. #5548

"Cisplatin in combination with gemcitabine demonstrates activity regardless of platinum sensitivity status in patients with recurrent ovarian cancer. However, longer platinum-free interval is associated with improved response to this therapy".

 Evaluation of a novel extracellular vesicle (EV) based ovarian cancer (OC) screening test in asymptomatic postmenopausal women. #5553

"The OC Test is capable of highly sensitive and specific detection of HGSC in asymptomatic postmenopausal women one year prior to Dx and can detect HGSC up to three years prior to Dx with superior sensitivity and specificity compared to CA125." 

Finding a screening test for ovarian cancer is important.  This is a different approach looking at extracellular vesicles. " Extracellular vesicles (EVs) are generated and released by cells as part of various physiological and pathological processes, including the progression of ovarian cancer. "Source Science Direct

 

The BEV1L study: Do real-world outcomes associated with the addition of bevacizumab to first-line chemotherapy in patients with ovarian cancer reinforce clinical trial findings? #5563

"This real world study provides support for findings from ICON7 and GOG-0218, suggesting that the benefit of adding bev to first line chemotherapy may be limited to patients with high-risk clinical factors ( Stage IV disease or stage III disease with visible residual disease or no evidence of surgery). "

 

Association of physical activity with self-reported quality of life after primary chemotherapy for ovarian cancer. #5574

"We observed positive associations between health tracker physical activity data and pt-reported QOL. Stronger associations were observed in younger pts. Interventions aimed at increasing physical activity may have broader quality of life benefits for individuals with ovarian cancer." 

When I was first diagnosed I was told to rest during chemotherapy treatment. When I recurred a few years later I was told to try to walk each day. I'm glad that theren is now data saying that exercise has QOL benefits.

 

Artificial intelligence to predict homologous recombination deficiency in ovarian cancer from whole-slide histopathological images. #5578

"By harnessing the power of deep neural networks (DNN), we provide a rapid and scalable solution for HRD prediction, circumventing the limitations of traditional molecular assays. Successful integration of this deep learning model into routine pathology workflows could significantly enhance diagnostic efficiency, reduce the turnaround time and financial cost compared with molecular assay. " 

There were a number of talks at ASCO related to the use of AI. HRD is a marker used to manage ovarian cancer patient treatments.

 

Germline genetic profiles of women with ovarian malignancies: A Myriad Collaborative Research Registry study #5585

"Based on this large registry, our data showed that over 15% of patients with ovarian malignancies have mutations in BRCA (12.5%) or Lynch genes (2.6%) with varying prevalence by race, age, and tumor site. Noted disparities indicate the importance of universal testing in patients with epithelial ovarian malignancies."  

I knew that Lynch syndrome was associated with endometrial cancer but I did not associate ovarian cancer with Lynch sydrome. 

 

Which posters caught your eye? Share them in a comment below.

Tomorrow,  I will post about a equity symposium I attended as well as the  connections and reconnections I made at the annual meeting.

Dee

Every Day is a Blessing!

Sunday at #ASCO24 Oral Abstracts and Rare Gyn Cancers

My meeting days all started with picking up a bite to eat in the Patient Lounge. The lounge was a great place to meet up with other advocates from around the world, relax is comfy chairs  and pick up a bite to eat at breakfast or lunch. 

Sunday started with the Gyn Cancer Oral Abstract Session followed by an afternoon of meeting with clinicians I am working with as well as learning about Patient Story .

Clear Cell OC

BrUOG 354 ph 2 Nivulomab alone or w ipilimumab in clear cell OC mutation -TP53 ,ARID1A PIK3CA
10% OC cells are clear cell ,
44 patients, hypothyroidism AE.
Combo better than single agent
Nivo ORR 14month combo 33 months pic.twitter.com/HksVonCyey

— Dee Sparacio (@womenofteal) June 2, 2024

 Recurrent OC no additional benefits from adding Atezolizumab

AGO-OVAR 2.29 Atezolizumab study
OS atezo arm 14.2 months vs 13.0 placebo arm
AES higher in Atezo arm #ASCO24 #gyncsm pic.twitter.com/GXDpeF2dG7

— Dee Sparacio (@womenofteal) June 2, 2024

 Endometrial Cancer 

#ASCO24 #gyncsm KEYVIBE 005 study
vibostolimab with pembro in recurrent dMMR endometrial cancer
antiTIGIT antibody
ORR 65% w 75% response greater than 1 year
OS not reached pic.twitter.com/TuEO356CV6

— Dee Sparacio (@womenofteal) June 2, 2024

Keyvibe-005 trial-cohort 1b- anti TIGIT vibostolimab + Pembro in MMRd, IO naive #EmCA after at least 1 line platinum- ORR 65% w/ DOR 75% at >1 year. Will wait to see ongoing DOR as ORR in RUBY 77% vs NRG018 57% in this MMRd population with higher median PFS...#ASCO24 #gyncsm pic.twitter.com/DDVmOUN8Z7

— Dr.Monica Avila (@MAvilaMD) June 2, 2024

Pharma support of trials 

#ASCO24 #gyncsm Ruan : Study oversight in ph3 gyn onc trials
Pharma support of trials has increased over the past 12 years . Higher COI in US than Europe
Hispanic and Black enrollment remains low pic.twitter.com/Z3MGRyC4vP

— Dee Sparacio (@womenofteal) June 2, 2024

When Bad News Comes Through the Portal ... Education Session

#ASCO24 #gyncsm
Dr Hubbard speaking on receiving information on the patient portal.
improved knowledge , patients more engaged , review charts for accuracy . How to address anxiety? How to clinicians pic.twitter.com/Bf2v28f0TP

— Dee Sparacio (@womenofteal) June 2, 2024

#ASCO24 amazing advocate @TheLizArmy #btsm speaking now on using the patient portal and sharing her story and Open Notes #gyncsm pic.twitter.com/xQ5ki55akB

— Dee Sparacio (@womenofteal) June 2, 2024

Exploring the Uncommon: What's New in Rare Gyn Cancers  - Low grade serous , Melanoma of the gyn tract and neuroendocrine carcinomas of the cervix

Gourley discussing low grade serous OC treatments: MAPK assoc tumors better outcomes. Endocrine treatment studies being done.MEk inhibitors more work needs to be done. CDK 4/6 inhibitors possible #ASCO24 #gyncsm pic.twitter.com/qlcd50KFhV

— Dee Sparacio (@womenofteal) June 2, 2024

#gyncsm #ASCO24
Au-Yeung : Melanomas in the gyn tract -rare disease
No consensus on staging
Novel therapies being tested. pic.twitter.com/jpWTHDnitD

— Dee Sparacio (@womenofteal) June 2, 2024

#ASCO24 #gyncsm @amandanfader on neuroendocrine carcinoma of the cervix
Rare tumor cancers need collaboration between cancer centers
Most NECC are HPV related @SGO_org has guidelines for NECC .
Swog S2012 study of plat/ etoposide/ atezolizumab enrolling pic.twitter.com/0XAKsYZtwn

— Dee Sparacio (@womenofteal) June 2, 2024

Obesity and Endometrial Cancer

#gyncsm #asco2024 Great abstract reemphasizing links between obesity& #endometrialcancer &very concerning trends increasing EC younger pts.Interventions&education along the entire reproductive health tract across all age groups are needed. Pcp , OB/GYN, Gynonc, endo, bariatrics pic.twitter.com/KgDyaqWPIh

— Nita Lee (@NitaKarnikLee) June 2, 2024

Cervical Cancer

#ASCO24 RTOG 0724 results confirm the findings of GOG 274- no role for adjuvant chemotherapy to follow chemo/RT in any setting for cervical cancer. Our next question is the role of NEO-adjuvant chemo vs chemo/io - this remains a key clinical question. pic.twitter.com/KTro49kiHK

— DrKatyMoore (@DrKatyMoore) June 2, 2024

GOG0724- chemoRT followed by chemo does not meet endpoints in patients with high risk stage 1A2, IB, 2A cervical cancers after radical hyst with majority IB with 70% + PA nodes with 26% not receiving treatment in chemo addition arm due to self dc #ASCO24 #gyncsm pic.twitter.com/9WXTmnnHsS

— Dr.Monica Avila (@MAvilaMD) June 2, 2024

Metastatic disease clinical trials 

Critical points to consider to advance truly patient-centered clinical trials with outcomes that matter
By the ⁦@EORTC⁩ President Dr. ⁦@Winette_vdGraaf⁩ ⁦@csoncol⁩ pic.twitter.com/FbaUeXvS6n

— Ophira Ginsburg (@OphiraG) June 3, 2024

 Tomorrow I'll review a few of the posters as well as a round-up of the connections I made. 

Dee

Every Day is a Blessing!

Saturday at #ASCO24 - Science, Opening Session and My Social Media Panel Presentation

Over the next few days I will share my experience at #ASCO24 , the science I learned , amazing people I spoke to and of course my presentation on social media. 

Late in the day on Friday,  I finally got to McCormick Place. The traffic from the airport was dreadful but I arrived in time to pick up my badge from the Faculty Lounge. Then I headed to my favorite sushi place - Nui Sushi for dinner.

Rapid Oral Abstract Session Highlights. (I missed some sessions as I had scheduled a time to practice my presentation. )

Ovarian Cancer: AXL expression can be used as a biomarker in OC. Those with high AXL expression had improved PFS and OS when treated with Bateraxcept in combo with taxol.

Rapid Oral abstracts #gyncsm #ASCO24
AXLerate-OC GOG 3059 Ph 3 , Dr Fuh batiraxcept AVB -S6-500 w/ paclitaxel in plat recurrent OC AXL expressed in OC. pic.twitter.com/FR8cqbaRYC

— Dee Sparacio (@womenofteal) June 1, 2024

Ovarian Cancer: Use of suvemcitug, an anti-VEGF drug with chemo,  met PFS goal 5.49 months vs placebo at 2.73 months.

Rapid oral abstract #gyncsm #ASCO24 Ph 3 suvemcitug anti-VEGF with chemo, common AE’s met primary end pt pic.twitter.com/mpvDwNAofO

— Dee Sparacio (@womenofteal) June 1, 2024

Ovarian , Fallopian, Peritoneal Cancers: Oral cyclophosphamide can be used together- Objective response rate 40%

#gyncsm #ASCO24 Dr Eyada oral cyclophosphamide and Bev in recurrent OC , fallopian tube or peritoneal , retro study pic.twitter.com/MEOzbRgCUv

— Dee Sparacio (@womenofteal) June 1, 2024

President's Speech and Invited Speakers

Dr Lynn Schuchter,President of ASCO, inspiring speech.  

We will continue to fight cancer all over the world! ASCO president DR Schucter YES! #ASCO24 #gyncsm pic.twitter.com/uIp3kgY7tg

— Dee Sparacio (@womenofteal) June 1, 2024

Jonathan Carlson, Microsoft Health Futures, spoke on AI use in medicine

#ASCO24 Jonathan Carlson speaking about General AI in Medicine #gyncsm pic.twitter.com/RkAxWriruA

— Dee Sparacio (@womenofteal) June 1, 2024

Challenges are ecosystem challenges .
AI can demystify medicine for patients .
Adopt AI for oncology radiology images Carlson #ASCO24 #gyncsm pic.twitter.com/6KiWJ1VETM

— Dee Sparacio (@womenofteal) June 1, 2024

Abraham Verghese , Stanford spoke next relating to the meeting theme Art and Science

“Covenant of Water” Author and physician sharing stories highlighting Curing vs healing. A Med exam can be transforming - it can seal a patient- physician relationship.
Listen to the patient story! #ASCO24 #gyncsm pic.twitter.com/pgC7GS8L57

— Dee Sparacio (@womenofteal) June 1, 2024

Dr Rathmell , NCI Director
Make trials more accessible. #ASCO24 #gyncsm pic.twitter.com/nNxXZXorFh

— Dee Sparacio (@womenofteal) June 1, 2024

Clinical Science Symposium Novel combinations across the gyn cancer spectrum

Ovarian Cancer combinations:

#gyncsm #ASCO24
Novel combos for gyn cancers Dr Matulonis
There are successful combos.
ATR inhibitors +PARP , being tested ; olaparib and PI3K as did not see superiority pic.twitter.com/f6LtzNgV91

— Dee Sparacio (@womenofteal) June 1, 2024

Cervical Cancer mTOR inhibitors

#ASCO24 #gyncsm Dr Li
mTOR inhibitor Onatasertib &toripalimab - checkpoint inhibitor in cervical cancer pic.twitter.com/ixSqT9D4Yc

— Dee Sparacio (@womenofteal) June 1, 2024

Ovarian Cancer - overcoming PARP resistance , HRD status did not impact response

#ASCO24 #gyncsm Dr Simpkin CAPRI study ATRi and PARPi combo to overcome PARP resistance in HGSOC strong preclinical synergy, cohort A results ORR at 49%, AE’s anemia , nausea , fatigue - Dose reduced in 40% of patients
Combo exhibited response irrespective of HRD stat pic.twitter.com/AVj2VrdJTM

— Dee Sparacio (@womenofteal) June 1, 2024

A review of combos:

#ASCO24 #gyncsm review of combos vs std of care by Dr Banerjee pic.twitter.com/NLVHdoig3L

— Dee Sparacio (@womenofteal) June 1, 2024

Endometrial cancers CTK4 inhibitors 

#ASCO24 #UCAM #gyncsm
Dr Green endometrial ca incidence rising 1% a yr. CDK4 elevated in Endo ca, study abemacilib + fulvestrant ORR 44% , PFS 9.0 months , AEs neutropenia, anemia, diarrhea , responses in endometriod , copy # low had durable responses pic.twitter.com/W2eFSV4I1v

— Dee Sparacio (@womenofteal) June 1, 2024

Future Endometrial Cancer work

Dr Cobb review of endometrial cancers future work (borrowing from BC) in subgroups of Endometrial cancers - CDK 4/6 etc pic.twitter.com/SYvTnPRyqE

— Dee Sparacio (@womenofteal) June 1, 2024

I finished the day participating in a panel with Dr Gil Morgan and Dr Gil Lopez  on Harnessing the Power of Social Media. What an honor! Below are a few tweets from the audience. Dr Morgan spoke on using social media to improve global oncology and the The OncoAlert Consortium. Dr Lopez spoke on using social media to advance research and professional development. I spoke on social media to educate patients with cancer and clinicians.

Dee Sparacio @womenofteal flanked by the two Gils (Gil-squared) presents #patientadvocacy as a #ovca survivor using #SoMe to unite other patients and engage clinicians to improve awareness, advocacy and positively improve outcomes. #ASCO24 @stage4kelly pic.twitter.com/7moR2nwUHn

— Dr Joseph McCollom DO (@realbowtiedoc) June 1, 2024

Rockstar #gyncsm advocate (and @AdvocateCollab member) @womenofteal taking the stage after "Gil squared" presos (@weoncologists and @GlopesMd) to share how patients & advocates use social media: education, support, advocacy, and interaction with clinicians/researchers #ASCO24 pic.twitter.com/N8vIL1gTNS

— Stacey Tinianov (she/her) MPH, BCPA (@coffeemommy) June 1, 2024

@womenofteal discussing the birth of #gynCSM and important work and research at #ASCO24

Trying this again with correct hashtag! pic.twitter.com/v8tTFqLDYn

— Annie Ellis (@Stigetta) June 1, 2024

Check back to read posts highlighting Sunday's Session and the connections I made at ASCO with researchers, clinicians and other advocates. 

Dee

Every Day is a Blessing!

Gynecologic Cancer Sessions at #ASCO24

 

From May 31st to June 4th the ASCO Annual Meeting will be held in Chicago. The theme this year is The Art and Science of Cancer Care: From Comfort to Cure. This meeting brings to McCormick Place more than 30,000 oncologists, researchers, allied science professionals and patient advocates from around the world.

I will be attending in person and posting/tweeting to X from various sessions using the #gyncsm and #ASCO24 hashtags.

The complete program may be found at  https://s3.amazonaws.com/files.oncologymeetings.org/prod/s3fs-public/2024-05/AM24-Program.pdf )

Below  is a list of the Gynecologic Cancer sessions ( Scientific & Education).

Saturday June 1, 2024 

8am Rapid Oral Abstract Session  E-451   

I  can't wait to hear more about:

Abstract 5518: Relationship of cancer stem cell
functional assay and objective response rate of patients
with recurrent platinum-resistant ovarian cancer in a
randomized trial.

Abstract 5520: Secondary cytoreduction followed by
chemotherapy versus chemotherapy alone in platinum-
sensitive relapsed ovarian cancer (SOC-1): A final overall
survival analysis of a multicenter, open-label, randomized,
phase 3 trial.

1:15pm Clinical Science Symposium -  Stronger Together: Novel Combinations Across the
Gynecologic Cancer Spectrum , E-451 

I  can't wait to hear more about:

Abstract 5509, A phase 1/2 study of the TORC1/2 inhibitor onatasertib combined with toripalimab in patient with advanced solid tumors: Cervical cancer cohort.

Abstract 5510, Combination ATR and PARP Inhibitor(CAPRI): A phase 2 study of ceralasertib plus olaparib in patients with recurrent, platinum-sensitive epithelial
ovarian cancer (cohort A).

Abstract 5511, A phase II study of fulvestrant and abemaciclib in hormone receptor positive advanced or
recurrent endometrial cancer.

Sunday June 2, 2024 

8:00am Oral Abstracts Hall D-2

 I  can't wait to hear more about:

Abstract LBA5500: Final results of BrUOG 354: A
randomized phase II trial of nivolumab alone or in
combination with ipilimumab for people with ovarian and
other extra-renal clear cell carcinomas.

Abstract LBA5501: Atezolizumab versus placebo in
combination with bevacizumab and non-platinum-based
chemotherapy in recurrent ovarian cancer: Final overall
and progression-free survival results from the AGO-OVAR
2.29/ENGOT-ov34 study.

Abstract 5502: Vibostolimab coformulated with
pembrolizumab (vibo/pembro) for previously treated
advanced mismatch repair–deficient (dMMR) endometrial
cancer: Results from cohort B1 of the phase 2
KEYVIBE-005 study.

Abstract 5503: Trends in phase 3 gynecological
clinical trials of targeted therapies: Study oversight and
pharmaceutical involvement in the past 12 years.

Abstract 5507: Endometrial cancer and obesity trends in
the United States in the 21st century.
First Author: Alex Andrea Francoeur, MD

 

Case Based Panel Optimizing the Therapy Sequence in High-risk Endometrial Cancer - E451a (11:30am -12:30pm CT  )  

Molecular analysis, patient guidance and clinical trial perspective for Endometrial cancer will be discussed.

 

Education Session - Exploring the Uncommon: What's New in Rare Gyn Cancers  

Low-Grade Serous Ovarian Cancer, Melanoma of the Gynecologic Tract, and Neuroendocrine Gynecologic Cancer will be discussed. 

Monday June 3 ,2024

9am Poster Session Hall A 

Posters by Topic
Biologic Correlates: Board(s) 392-396
Cervical Cancer: Board(s) 397-413, 492a-493b
Ovarian Cancer: Board(s) 414-458, 494a-500b
Uterine Cancer: Board(s) 459-488, 501a-503a
Other Gynecologic Cancer: Board(s) 489-491, 503b

Poster sessions provide the opportunity to speak directly to researchers about their research results and to learn about early phase research.  With well over 100 posters in the gyn cancer category,  I will concentrate on ovarian cancer posters. Here are a few that piqued my interest.

 

Abstract TPS5635: A randomized, multicenter, open-
label phase III trial of hyperthermic intraperitoneal
chemotherapy in platinum-resistant recurrent ovarian
cancer (KOV-HIPEC-02). #396

Abstract 5544: Tumor-informed ctDNA as an objective
marker for postoperative residual disease in epithelial
ovarian cancer. #415

Abstract 5546: Differences in physical and emotional
distress amongst patients undergoing neoadjuvant
chemotherapy versus surgery for advanced ovarian
cancer: Patient-reported outcomes at diagnosis. #417

Abstract 5547: Use of cell-free DNA from ascites to
identify variants and tumour evolution in a cohort of
patients with advanced ovarian cancer #418

Abstract 5551: The efficacy and safety of RC88 in
patients with ovarian cancer, non-squamous-non-small-
cell lung-carcinoma and cervical cancer: Results from a
first-in-human phase 1/2  #422

Abstract 5553: Evaluation of a novel extracellular
vesicle (EV) based ovarian cancer (OC) screening test in
asymptomatic postmenopausal women #424

Abstract 5563: The BEV1L study: Do real-world
outcomes associated with the addition of bevacizumab
to first-line chemotherapy in patients with ovarian cancer
reinforce clinical trial findings? #434

Abstract 5573: Feasibility of using the handheld MasSpec
pen technology for intraoperative identification of ovarian
cancer during tumor reductive surgery. #444

Abstract 5578: Artificial intelligence to predict
homologous recombination deficiency in ovarian cancer
from whole-slide histopathological images. #449

Abstract 5585: Germline genetic profiles of women with
ovarian malignancies: A Myriad Collaborative Research
Registry study. #456

Abstract TPS5625: REJOICE-Ovarian01: A phase 2/3
study of raludotatug deruxtecan (R-DXd) in patients with
platinum-resistant ovarian cancer (OVC). #494a

Abstract TPS5635: A randomized, multicenter, open-
label phase III trial of hyperthermic intraperitoneal
chemotherapy in platinum-resistant recurrent ovarian
cancer (KOV-HIPEC-02). #499a

1:15-2:30pm  Education Session:  State of the Art in Gyn Cancer :New Drugs and Companion Diagnostics S 100a   

Immunotherapy, Anti-body drug conjugates and PARP inhibitors will be discussed

3:00-4:15 pm Educations Session: Controversies in the Surgical Management of Gyn Cancer :Balancing the Decision to Operate or Hesitate E450b 

Challenges in gynecologic cancer Surgery, minimally Invasive for fertility-sparing Treatment , and the timing of debulking surgery will be discussed.

Although not specific to gyn cancers, this session on June 3rd is another one I will try to add to my schedule or watch after the meeting.

9:45 AM-11:00 AM Education Session
Solving Decades of Drug Shortages in Oncology: What, Who,
and When?
Location: S100a 

Lastly, In addition to sharing on X presenations from the meeting I will be presenting during the Harnessing the Power of Social Media: Elevating Global Oncology Practice, Research, and Education education session on June 1, 2024 (3-4pm CT) . The topic of my presentation is Social Media as an Educational Tool for Patients and Clinicians. I am so excited that I will get to meet Drs Gil Morgan  and Gilberto Lopez, the other panelist in person . I have followed them for years on Twitter and respect the work they have done on social media.  I hope to see you in room S402!

 I look forward to taking a stroll through the Exhibit hall and  spending time in the Patient Advocate Lounge meeting with other advocates.  I want to give a special shout out to Jill Feldman, Lung Cancer Patient and Advocate on her Patient Advocate Award!   Congratulations, Jill !

If you are attending ASCO which sessions are on your "can't miss" list? 

See you in Chicago!

 

Dee

Every Day is a Blessing