Grateful for Ten million , five hundred and ninteen thousand, two hundred minutes

The song, Seasons of Love from the Broadway show, RENT is a favorite of mine. 

"Five hundred twenty-five thousand six hundred minutes.
Five hundred twenty-five thousand moments so dear.
five hundred twenty-five thousand six hundred minutes.
How do you measure,
Measure a year?"

For this year's Cancerversary the verse might read...

"Ten million , five hundred and nineteen thousand, two hundred minutes.

Ten million , five hundred and nineteen thousand, two hundred moments so dear.

Ten million , five hundred and nineteen thousand, two hundred minutes. 

How do you measure, 

twenty years?"

Here's how I would measure the past twenty years. 

It all started counting on July 29, 2005.  I woke up from surgery and heard Dr Rodriguez, my gynecologic oncologist say to me " I am sorry Dee, you have stage 3B ovarian cancer. I will do everything I can to make you well. " My plans for my future changed in an instant on hearing those words. 

Those early months included a phase 1 clinical trial,  nine cycles of chemotherapy, fatigue, neuropathy, loosing my hair and so many blood tests and scans. My chemo schedule took over my life. I never knew if low blood counts would cause chemo to be postponed and how that would impact time with family and friends.   I missed out on many family gatherings.  I worried if I would survive a year, let alone five years. (Only 30% of women diagnosed with late stage ovarian cancer live five years. ) I was thrilled when I was able to attend my niece's wedding in May of 2006.   I finished treatment disease free with the help of my wonderful gynecologic  oncologists, Drs. Rodriguez and Gibbon and the caring nurses and staff at Rutgers Cancer Institute. My family and friends were there every step of the way. 

In 2006, Dr. Gibbon set me on the path of ovarian cancer advocacy by suggesting I attend the LiveStrong Survivors Summit in the Fall of  2006.  I came back with a plan to start a gyn cancer survivors support group at my cancer center , started writing this blog and began volunteering with a local non-profit , Kaleidoscope of Hope Ovarian Cancer Foundation to raise funds for research and awareness of the disease. 

Hanging teal ribbons at the Cancer Center

I went back to my high school teaching job. I was happy to work at a school where I had the support of the administration and  fellow staff members during my treatment and on my return.  

After missing so many family gatherings during treatment, the next  two and a half years included many wonderful times.  We visited my son in Switzerland where he spent his Junior year abroad. There were also graduation celebrations including my son graduating college, my daughter graduating with her masters degree and latter that May she was married.

At the two year mark my follow-up plan was to have a CT scan , CA-125 blood test and check-up every 6 months. In late 2008, a follow-up CT scan, showed a recurrence on my liver and spleen even though my CA-125 was normal at 17. At the time, I was upset knowing I would once again be disrupting the family schedule and plans with my treatments. But I also felt somewhat at ease since I was familiar with the cancer center nurses and staff and knew the side effects of taking carboplatin and taxol.  I decided to have surgery to remove my spleen and resection my liver in November followed by 6 rounds of carboplatin and taxol chemotherapy starting in January. I experienced one stumbling block though during chemo.  On my second chemo (eleventh chemo overall) I had a severe allergic reaction to carboplatin where I ended up in the hospital and had a Cardiac catheterization.  Thankfully my heart was functioning properly.  I finished the last four chemo cycles with taxol only even though it caused an increase in the neuropathy in my toes and led to toe nail loss.  In the spring of 2009, I was disease free once again. My husband and I celebrated by going on a cruise to Alaska with our Rutgers Football tailgating friends. 

As time progressed, I wondered when my CA-125 would rise to 35 , a signal my cancer may have returned or when a CT scan  would show a recurrence. I stressed at every scan and follow-up oncology appointment.Scanxiety is real!  Many survivors talk about finding a new normal. For me I think of it as a different normal. 

Being diagnosed with ovarian cancer and being in treatment was hard, scary and physically challenging. My faith helped me through so many rough patches as did so many of the survivors I met online especially those ladies on the ACOR listserve.  I won't say having cancer was good or a blessing. Rather my cancer diagnosis lead me to travel down a different path that of cancer research advocate.

 

 

Connections to other LiveStrong advocates led me to the Research Advocacy Network and MedX. A friend started #bcsm ( Breast Cancer Social Media) on Twitter ( now X). I met Christina Lizaso , an ovarian cancer advocate on a #bcsm chat about fear of recurrence and together we started the #gyncsm ( Gyn Cancer Social media ) chat and community on Twitter. We offered support, shared information and connected cancer survivors, caregivers and gyn oncs, researchers and other health care providers during chats.  Interacting and working with some of the top ovarian cancer gyn oncs on Twitter/X opened doors I didn't know patients or survivors could open. The #gyncsm community partnered with researchers and published papers on the needs of women with ovarian cancer,  gynecologic cancer caregiver support services and the needs and perspectives when considering PARP inhibitors. I provided the patient voice for two editions of a book I co-authored with Dr Don Dizon. I became an ASCO ( American Society of Clinical Oncology) member and served on the clinical practice guideline committee as well as on three ASCO guideline panels (Anti-emetics, Neoadjuvant Chemotherapy for OC and Germline and Somatic testing). I joined SGO and served on their Communication Committee. Some of the best moments in my advocacy work was presenting at two ASCO Annual meetings (a Fireside chat and a Social Media as an Educational Tool presentation) and working with other advocates on two abstracts accepted for presentation at the SGO Annual meetings in 2023 and 2024. 

After my Fireside Chat presentation with Dr Dickson at ASCO 2019.

 

Since my recurrence, I have been able to be a part of so many joyful and fun events.   I shared the joy of the birth of my two grandsons, my son's wedding and when he was awarded his PhD. My children led me to travel more too. I visited Australia with my son when he gave a presentation there and flew to Fiji to visit my daughter when she lived there with her family. 

In 2010 we welcomed Amber a mixed breed dog into our home. Her high energy level lead to our participation in dog Agility. It was a sport I knew nothing about but it has lead to amazing friendships. 

As you can see from reading this post that I have been blessed to measure twenty years. 

Today, July 29, 2025 I am most grateful for the compassionate, excellent care provided by my gynecologic  oncologists and their nurses, the love and support of my husband, my children, their spouses and grandsons and the prayers and support of my friends. 

Dee 

Every Day is a Blessing.  

The Needs of Cancer Survivors in NJ

I am pleased to serve as a member of the NJ State Cancer Coalition Survivorship Workgroup. This month we have been sharing a information about survivorship, quotes from survivors and resources on social media ( Facebook, X, BlueSky, Instagram) Our group is committed to addressing the needs of cancer survivors and their caregivers in our state.  

To help us better understand those needs, we invite survivors and caregivers in NJ to share your perspectives in a short 3-5 minute survey. We are interested in learning what types of information, resources and support you find meaningful as well as the topics that matter most to you. 

The survey is completely voluntary and confidential. Your responses will be anonymous, used for planning purposes only and no identifying information will be collected.

For this Survey, survivorship is defined as beginning at the time of diagnosis and continuing throughout your lifetime.

 

http://healthsurveys.nj.gov/NoviSurvey/n/zz4hf.aspx 

 

 

 

 Thank you for participating. 

 

Dee

Every day is a Blessing !  

 

 

Looking Back at #ASCO2025 Research

It has been a busy June for me with family and personal commitments. I was able to attend the ASCO annual meeting virtually and have picked studies I found interesting to share with you.  I'll start with two studies that were not gyn cancer focused.  

1) A randomized phase III trial of the impact of a structured exercise program on disease-free survival (DFS) in stage 3 or high-risk stage 2 colon cancer: Canadian Cancer Trials Group (CCTG) CO.21 (CHALLENGE).  lba 3510 

This was a phase 3 trial of 889 patients with stage III and high-risk stage II colon cancer. Half the patients received a structured exercise program working with a physical activity consultant twice a month for coaching sessions and supervised exercise sessions . After six months they met with the consultant once a month. The other half of the group received educational materials on exercise and nutrition. 

Conclusion:" ... exercise program initiated shortly after completion of adjuvant chemotherapy improves disease free survival, overall survival, patient-reported physical functioning, and health-related fitness. Health systems should incorporate structured exercise programs as standard of care for this patient population." 

My Take:  I'm happy to see a randomized clinical trial of exercise show results that improved overall survival. More info https://www.asco.org/about-asco/press-center/news-releases/movement-medicine-structured-exercise-program-challenge

 

2) Glucagon-like peptide-1 receptor agonists (GLP-RAs) and incidence of obesity-related cancer in adults with diabetes: A target-trial emulation study.

The study of 85,015 adult patients from 43 U.S. health systems investigated whether GLP-1RAs reduce the risk of obesity-related cancer in adults with diabetes and obesity compared to dipeptidyl peptidase-4 inhibitors (DPP-4is), a weight-neutral class of diabetes medication. 

Conclusion: GLP-1RAs were associated with a lower risk of obesity-related cancer compared with DPP-4is in a large, real-world cohort of patients with diabetes and obesity. 

 My take: Women in the study who used a GLP  had an 8% less chance of developing obesity related cancers. Could use of GLPs impact the number of women diagnosed with endometrial cancers? https://www.moffitt.org/endeavor/archive/glp-1-drugs-may-lower-risk-of-obesity-related-cancers-in-people-with-diabetes/

 

3) ROSELLA: A phase 3 study of relacorilant in combination with nab-paclitaxel versus nab-paclitaxel monotherapy in patients with platinum-resistant ovarian cancer (PROC) (GOG-3073, ENGOT-ov72).

Relacorilant is an investigational, oral, selective glucocorticoid receptor antagonist (SGRA) that increases tumor sensitivity to chemotherapy-induced apoptosis.Patients were randomized  to either relacorilant (150 mg the day before, day of, and day after nab-paclitaxel) + nab-paclitaxel (80 mg/m² on days 1, 8, and 15 of each 28-day cycle) or nab-paclitaxel alone. 

Patients in the Relacorilant arm had progression free survival(PFS) of  6.54 months compared to patients in the nab-paclitaxel arm with PFS of 5.52 months. At the Interim analysis the overall survival (OS) for those in the Relacorilant arm was 15.97 months  versus the nab-paclitaxel arm of 11.50 months, which is clinically meaningful. It was found that patients in the relacorilant arm had less ascites. Adverse events:

 

 

Conclusion  "Relacorilant + nab-paclitaxel is the first treatment regimen to demonstrate a PFS and OS benefit in patients with PROC compared to a weekly taxane, the most efficacious comparator. These positive efficacy data and a favorable safety profile position relacorilant + nab-paclitaxel as a new standard for patients with PROC, without the need for biomarker selection."

 

My take: So many studies show good PFS numbers but then end up at final analysis showing no significant difference in overall survival. While there is a meaningful difference  at this point, and it looks promising we'll have to wait for those final numbers to say if this will change care. 

 

 

4) A phase II trial of pembrolizumab and lenvatinib in recurrent or persistent clear cell ovarian carcinoma ( CCOC) (NCT05296512).

This study was a single-arm two-stage phase 2 trial to investigate the clinical activity of the combination of the PD-1 inhibitor pembrolizumab with the anti-angiogenic tyrosine kinase inhibitor lenvatinib in patients with CCOC. The study combined an immune checkpoint inhibitor and an anti-VEGFR inhibitor. There were  Seventeen of the 30 patients enrolled were alive and progression free at 6 months. No Grade 4/5 adverse events. 

 

Conclusion :"The combination of pembrolizumab/lenvatinib demonstrates encouraging evidence of clinical activity in CCOC, with 9 pts experiencing a confirmed response and 16 pts alive and progression-free at 6 months. "

 

My Take: CCOC is a rare cancer and this combination seems promising. I look forward to the results of a Phase 3 trial. 

 

5) TRUST: Trial of radical upfront surgical therapy in advanced ovarian cancer (ENGOT ov33/AGO‐OVAR OP7). LBA5500

This study was an international randomized multicenter phase III trial in patients with stage IIIB-IVB OC and good performance status (ECOG 0/1) comparing primary cytoreductive surgery (PCS) followed by 6 cycles of intravenous (iv) chemotherapy to 3 cycles of neoadjuvant iv chemotherapy (NACT) followed by interval cytoreductive surgery (ICS) and 3 further iv cycles.  Medium PFS was 22.1 months for the PCS arm and 19.7 for the ICS arm. Medium OS was 54.3 for the PCS arm and 48.3 for the ICS arm. 

QOL:

 

 

Conclusion "In expert centers with proven surgical quality, PCS followed by iv chemotherapy resulted in a significantly longer median PFS and a numerically longer OS compared to NACT/ICS in non-frail OC pts." Statistical significance in the primary endpoint  which was overall survival was not reached. 

My Take: It has been known for some time that having surgery by a gyn onc at an expert / NCI center provided better results for women diagnosed with ovarian cancer. Better results were also found when the smallest amount of disease is left after initial surgery (R0). As stated during the study distillation by Dr Barber maybe there  are subpopulations that could benefit - age, tumor size, molecular factors, stage III vs IV? I have a personal bias since I had surgery first on my stage 3 initial diagnosis and also again on my recurrence. But I feel the decision whether or not to have surgery first should be made between with the patient and her gyn onc based on the patients health, age and preference. 

~~~~~~~~~~~ 

6) Since there is no screening test for ovarian cancer , I am always looking for abstracts about early detection methods. This poster discusses work to develop and validate a high-throughput Ovarian Cancer detection test based on plasma extracellular vesicle (EV)-associated biomarkers. (Carlos Salomon, Abstract 5582/Poster 480). Plasma from 1553 women ( healthy ,benign and ovarian cancer) was used to develop the test. The test achieve a sensitivity of 77% and a specificity of 99.6%. Though more validation work needs to be done these results are an improvement over the CA-125 and has promise in my opinion. 

Every year after attending ASCO, in person or virtually, I hopeful for the future of cancer patients. 

 Dee

Every Day is a Blessing!  

 

 

What I Wish I Knew

Last week I had the privilege to present at an online session of the Community Cares and ECHO Survivorship  Program.Joining me on the panel were two amazing advocates, a prostate cancer survivor,  Ralph Stowe and a breast cancer survivor, Yakima Deloach. The session began with a presentation by Dr S Manne on fear of recurrence.

Here is my response to a question we were asked.

What do you wish you knew then that you know now about your cancer experience?

This is a great question. For me  I wish I would have had a better idea of what to expect after treatment was over.  The nurses and my gyn oncs prepared me pretty well for what to expect after surgery and during chemotherapy treatment. But I felt like a rudderless ship after treatment ended.

·     They told me I would lose my hair in 14 days. I did. But losing your eye lashes and eyebrows and the hairs in nose took a bit longer.  No one told me just how long till hair other than what I call "peach fuzz" would grow in or when it would stop being so curly and go back to being straight like before treatment. 

·      I had neuropathy in my toes.  At times, I felt like someone was stabbing me in my toes. I learned to wear warm boots in the winter and shoes with rounded toe boxes. The neuropathy has stayed with me.

·      I was told I would be fatigued from the chemo but no one told me how long I would feel fatigued after finishing treatment. I went back to work 6 months after treatment and every day I got home I needed to take a nap. 

·      The hardest part though was that I found it hard to remember the names of things. I needed to describe an  object such as icicles by describing it - "water that is frozen and hangs off of gutters".  Or "white stuff you use to make a cake but not sweet" for flour.   I would write a blog post and leave blanks then come back later to fill in the words. Multitasking made remembering words and my chemo brain worse. 

 

I became impatient with myself that I wasn’t bouncing back quicker which leads to a second piece of advice I would give myself - be honest with myself and others. I needed to be honest about what I was feeling, emotionally and physically to get the help I needed.  I needed to be honest about being anxious or sad or fearful or vulnerable or tired or in pain or even happy to be here.  

 

If you are a cancer survivor what do you wish you knew? 

 

My next post will be a list of some of the Ovarian Cancer research being presented at ASCO this year. 

 

Dee

Every Day is a Blessing! 

Cancer Research That Caught my Eye

Two emails, I received from the NCI this week contained studies that caught my eye.  

Aged and BRCA mutated stromal cells drive epithelial cell transformation

https://aacrjournals.org/cancerdiscovery/article/doi/10.1158/2159-8290.CD-24-0805/754132/Aged-and-BRCA-mutated-stromal-cells-drive 

https://www.cancer.gov/news-events/cancer-currents-blog/2025/ovarian-cancer-stic-high-risk-mscs?cid=eb_govdel

We now know that precancerous growths called serous tubal intraepithelial carcinoma (STIC) lesions in the fallopian tube lead to high grade serous ovarian cancer. This study found STIC lesions in the ovary develop with the aid of a specific type of stem cell called high-risk mesenchymal stem cells (MSCs). The MSCs are found in the stroma ( tissue ) under the STIC lesions. When researchers inserted MSC's and healthy fallopian tube tissue into mice the mice developed ovarian cancer. It appears from this study that there is involvement of MSCs in the development of ovarian cancer although more research will need to be done. 

Expanding Research on Dormant Cancer Cells Aims to Prevent Metastasis  

 

https://www.cancer.gov/news-events/cancer-currents-blog/2025/metastasis-dormant-cancer-cells-immune-system?cid=eb_govdel_cancerinfo 

 

I often wonder why some people can go years after a cancer diagnosis and treatment before a recurrence occurs. Could it be that cells go dormant? Then what activates them to grow? This article looked at the latest dormant cancer cell research. Both of these studies used breast cancer mouse models.

The first study mentioned in the article discusses how breast cancer cells that migrated to the lungs stay dormant due to immune cells. Alveolar macrophages express transforming growth factor (TGF)-β2 and along with macrophage-cancer cell interactions via the TGF-βRIII receptor keep the cancer cells in a dormant state. ( https://pubmed.ncbi.nlm.nih.gov/39378878/). 

A second study used three mouse models. It was found that Natural killer (NK) cells was required to keep the breast cancer cells dormant. The dormant cells resemble cancer stem cells. (https://aacrjournals.org/cancerres/article/84/20/3337/749081/Natural-Killer-Cell-Regulation-of-Breast-Cancer) 

I know of ovarian cancer (OC) survivors who recurred more than 10 years after their initial diagnosis. It makes me wonder if there are dormant OC cells in the pelvis and abdomen long after treatment who are kept in check by immune cells. Could the work currently being done on the tumor microenvironment help us understand if there is an OC stem cell kept in check by our own immune system. 

 

Dee

Every Day is a Blessing!

 

 

 

From a Distance: SGO Annual Meeting 2025 - Ovarian Cancer Highlights

I was unable to attend the SGO Annual meeting this year due to a family commitment but I did follow along on X(Twitter).

To kept on top of the action, I followed SGO Social Media Ambassadors Social Media Ambassadors on X- @RiosDoriaMD , @nicoleflemingmd, @meddles28, and @ShannonWestin and others.

Here are some of their ovarian cancer research posts I found most interesting :

Trop-2 is a cell surface protein expressed by cancer cells 

ADC Antibody Drug Conjugate 

Stomatitis is inflammation of the mucous membranes of the mouth . 

58 patients in the study

Dr Rubinstein presenting novel Trop-2 ADC at 3mg/kg dose led to 80% disease control rate in plat-resistant #ovariancancer. Most common toxicity stomatitis which can be managed with early intervention. #SGOMtg #SGO2025 pic.twitter.com/vBqb7Hus5n

— Nicole D. Fleming MD (@nicoleflemingmd) March 15, 2025

 

GOG 3066/DENALI 

Azenosertib an enzyme inhibitor that binds to called Wee1 and disrupt cell reproduction. 

Cyclin E1 is a protein is encoded by the CCNE1 gene.

 

#SGOMtg- on the scene with Dr Fiona Simpkins to discuss impact of her work exploring WEE1 inhibition in CCNE1-expressing #ovariancancer #gyncsm #SGO2025 @nicoleflemingmd @RiosDoriaMD @meddles28 pic.twitter.com/jmNi8qk8Cv

— Shannon Westin, MD, MPH, FASCO (@ShannonWestin) March 15, 2025

Exciting data by Dr Simpkins from GOG 3066/DENALI study showing activity of Azenosertib in plat-resistant #ovariancancer stratified by cyclin E1 IHC overexpression. ORR 35% in cyclin E1 biomarker positive! #SGOMtg #SGO2025 pic.twitter.com/mlPRIc6AmM

— Nicole D. Fleming MD (@nicoleflemingmd) March 15, 2025

 GOG 3044

Afuresertib inhibitor of the serine/threonine protein kinase Akt (protein kinase B) . No significant difference in progression free or overall survival.

 

Dr. Herzog presenting @GOG PROFECTA-II/GOG-3044 trial of paclitaxel +/- afuresertib for platinum resistant ov cancer. Negative trial, but identified targets! @SGO_org @GOG #SGO2025 #SGOMtg pic.twitter.com/ZRz5NbAuPv

— erin medlin (@meddles28) March 15, 2025

Starting day 2 of scientific presentations @SGO_org! Dr Herzog presents data from GOG 3044 showing no benefit adding Afuresertib to weekly Taxol in plat-resistant recurrent #ovariancancer. #SGOMtg #SGO2025 pic.twitter.com/up5P6Zb0SZ

— Nicole D. Fleming MD (@nicoleflemingmd) March 15, 2025

EWOC-1 was a study of three different chemotherapy regimens . Use of carboplatin alone was associated with poorer survival.

Congratulations ⁦@JudeNawlo⁩ on ⁦evaluating post-EWOC practice patterns in elderly cohort #ovarinacancer pts! Pts w single agent carbo had worst outcomes- impt@to use platinum doublet when feasible. ⁦@SGO_org⁩ ⁦@GOG⁩ ⁦@IGCSociety⁩ @gyncsm ⁦ pic.twitter.com/efZNiyyP29

— Bhavana Pothuri (@BPothuri) March 15, 2025

 

 Mirv MIRASOL Study of ocular events.

During the #SGOMtg, Tashanna Myers, MD from Baystate Medical Center (@BaystateHealth) presents results from the phase 3 MIRASOL study, which tested the impact of treatment-emergent ocular events on health-related quality of life in patients with FRα-positive platinum-resistance… pic.twitter.com/UxE92NmdaD

— Moffitt Cancer Center (@MoffittNews) March 17, 2025

RAINFOL-01 study (NCT05579366)  

Rinatabart sesutecan (Rina-S) a novel folate receptor alpha (FRα)–targeted antibody-drug conjugate (ADC). The treatment in  heavily pretreated patients with platinum-resistant ovarian cancer  showed activity regardless of folate receptor alpha (FRα) expression level.

Rina-S Generates Durable Responses in Advanced Platinum-Resistant Ovarian Cancer @EKLee_MD @DanaFarber @SGO_org #SGOMtg #SGO2025 #gyncsmhttps://t.co/4Fpsbj40Js

— OncLive.com (@OncLive) March 17, 2025

 Low Grade Serous Ovarian Cancer 

Combo of Avutometinib  a Ras-Raf-MEK-ERK signaling inhibitor and Defactinib is small molecule inhibtor of focal adhesion kinase (FAK) for KRAS + recurrent low grade OC.

Avutometinib/Defactinib Combo Drives Responses in Recurrent Low-Grade Serous Ovarian Cancer @SGO_org #SGO2025 #SGOMtg #ovcahttps://t.co/LnYiBw2Vb4

— OncLive.com (@OncLive) March 17, 2025

Please let me know if I missed anything you felt was important for patients/ survivors. 

 I was happy to see ways that patient advocates, researchers and clinicians were able to   #MultiplyYourImpact ! 

Thank you Dr Fader (@amandanfader)  for your leadership!  I look forward to your vision for the future,  Dr Karen Lu (@karenluMD) !

Dee

Every Day is a Blessing! 

Aspirations for 2025

Wishing you all a Happy and Health 2025. 

It's time once again to put together my list of what I aspire to do in 2025. 

• Let's start off with something that has been on my list since 2014. Yes, Visiting Maine remains on my list. Maybe this year?
• Amber is going to be 15 years old this year. I hope to continue to take her on those long walks.
• I will continue to create art - watercolor in particular.
• Exercise is on my list. I'll continue taking lessons and playing Pickleball and dancing in Jazzercise class.
• As the #gyncsm chat on X/Twitter came to a close I started thinking more about the types of advocacy work I am involved with. My ovarian cancer experience, now twenty years old is valuable on some levels but is out of date in other areas. I have no experience with any of the new treatment options. So some activities - updating this blog with the latest ovarian cancer research news, reviewing cancer research grant applications and being a patient advocate advising clinical trials and mentoring other women diagnosed with ovarian cancer will continue.  Slowly, I will scale back other time commitments. I will finish the terms of my appointments on different committees but I will not accept new positions in 2025.
• I look forward to spending more time with Nick, my children, their spouses, my grandsons and friends.
  

I think my word of the year will be SILENCE. The world is a noisy and busy place. I tend to be on the move a lot. So I'll make an effort to just be quiet - no TV, no social media, - just be. 

Dee 

Every Day is a Blessing!