We the Patients - A Must Read

Background: When I heard that fellow advocate, Matthew Zachary wrote a book about navigating our healthcare system and patient advocacy, I knew I needed to read it. I have known Matt since the mid-2000's. We connected through the LiveSTRONG Summits and LiveSTRONG Hill Day ( which he mentioned in his book) . He has been outspoken and a driving force behind changes in health care for AYA's and other cancer groups and an influencer of cancer advocates through the years. 

We the Patients is a must read for patients, advocates oncologists , health center administrators and dare I say every Congressman and Senator ! The book provides the history of the healthcare system in the US- the good, the bad, and the ugly. I have witnessed some of the ugly that has occurred through the past 20 yearsyears. 

Matt's diagnosis with a brain tumor is the thread between the chapters. Some of the topics he discusses includes the ACA, the insurance industry, denials of care, cancer debt and the change in survivorship care.  He highlights the work of advocates such as Maimah Karmo,  and Alli Ward,  physicians,  Dr Pat Ganz and Dr Harold Freeman to name a few and organizations such as Cancer Nation, LiveSTRONG whose work has helped improve conditions for cancer survivors nationwide. He stresses how we can and need to be the voice of change.  Hill days are not enough. We need to share our stories, be engaged in policy and vote. 

"I never set out to be a cancer advocate/mouthpiece/champion/ rabble-rouser but that is exactly where I ended up. " We all should be thankful that Matt has been exactly that. This book can make a difference in every cancer patient’s , caregivers and policymakers life.  

If you want to buy a copy on Amazon, please visit https://tinyurl.com/a84npsxv

Dee

Every Day is a Blessing!  

#ASCO26 The Primary Surgery vs NACT Debate

Today I will share information from the #ASCO26  session Let's Debate: Surgery Versus NACT in Advanced Ovarian Cancer , May 31, 2026 with  Dr Mahner- Surgery  and Dr Olawaiye NACT and Dr Bixel distilling the information. 

I posted this to X the day I viewed the session.   

On Demand #ASCO26 Let's Debate: Surgery Versus NACT in Adv OC 5/31
Dr Mahner- Surgery Dr Olawaiye NACT
I wish I was in the room for this debate! Dr Bixel did an excellent job highlighting patient qualities when making the decision whether to use Surg or NACT. #gyncsm pic.twitter.com/DnP5rr2T9Q

— Dee Sparacio (@womenofteal) June 1, 2026

 

Let me share a few other slides from the debate. 

 Dr Mahner shared information about the TRUST and other trials and then looked at real world data regarding surgery and NACT to reach his conclusion that primary surgery is preferred when certain conditions exist. 

Then Dr Olawaiye spoke about NACT - neoadjuvant chemotherapy in late stage ovarian cancer and reached this conclusion to support his position. 

 

Dr Bixel distilled  the data presented during the debate. She spoke of the use of different scoring methods to predict whether surgery was appropriate or not ( Peritoneal Cancer Index and Fagotti Score / Predictive Index Value) and then drew her conclusions. 

 

(There is an article by Dr Bixel in the ASCO Education Book  - https://ascopubs.org/doi/10.1200/EDBK-26-520652   - give a read for more details. )

The Key take away for me was:  

Shared decision making is key! Patient Factors ( frailty, co-morbidities etc)  and amount and location of disease must be discussed with patients. This way each patient is receiving the best treatment for their circumstances.  

Dee

Every Day is a Blessing! 

Review of #ASCO26 - Gyn Cancer Oral Abstract Sessions, May 29th sessions

I did not attend ASCO in person this year but rather I watched sessions live.  When not available live I watched session On Demand the next day.  I continued the tradition I started when I attended meetings in person.  I posted on X (Twitter) summarizing and sharing slides from the presentations. 

The Oral Abstract Session for Gynecologic Cancers was held on Friday, May 29th. My focus what on ovarian cancer treatment research. ( Although there is one endometrial trial in this post) 

 Endometrial Cancer: Ruby Trial Dostarlimab + Chemo Abs 5501

Virtual #ASCO26 Day 1 GYN Oral abstracts long-term survival rates dostarlimab + chemotherapy (dMMR/MSI-H) endometrial cancer in RUBY trial. Matthew A. Powell, MD #gyncsm
OS benefit 16 months | Mixed cure model estimate used in study pic.twitter.com/ofZVX3nMti

— Dee Sparacio (@womenofteal) May 29, 2026

 Ovarian Cancer  NRG GY018  Abs 5502

Virtual Day 1 #ASCO26 Gyn Oral abstracts #gyncsm 5502 OS analysis pembrolizumab plus carboplatin/paclitaxel (CP) as compared to CP plus placebo (PBO) in the NRG-GY018 trial , FDA approval received for EC pic.twitter.com/aYWN5H6KlG

— Dee Sparacio (@womenofteal) May 29, 2026

Ovarian Cancer ROSELLA trial  Abs 5503

Gyn oral abstracts #ASCO26 #gyncsm
OS analyses for prior taxane use in the phase 3 ROSELLA trial of relacorilant plus nab-paclitaxel versus nab-paclitaxel monotherapy in patients OC (GOG-3073)
*Prior taxane use did not reduce effect of relacorilant, No relacorilant fatal AE's. pic.twitter.com/NxvrTN1WfQ

— Dee Sparacio (@womenofteal) May 29, 2026

 Late Breaking Abstract CHIPRO  LBA 5504

Gyn oral ab #ASCO26 #gyncsm A phase III CHIPRO study of chiauranib ( Aurora B Kinase inhibitor) plus weekly paclitaxel for platinum-resistant / refractory ovarian cancer. LBA5504
PFS 4.57 mo , OS no significant difference between arms, most AE's hematological pic.twitter.com/c3UHujM7Ae

— Dee Sparacio (@womenofteal) May 29, 2026

 Ovarian Cancer CHRONO Abs 5505

#ASCO26 Gyn Oral Abstracts #gyncsm CHRONO: A randomized ph II trial of the chronology of surgery after neoadjuvant chemotherapy for ovarian cancer. ( 3 cycles of chemo then surgery vs 6 cycles chemo then surgery.) 10% each arm HIPEC. QOL no significant difference pic.twitter.com/LG7TvyQOS7

— Dee Sparacio (@womenofteal) May 29, 2026

 

Distillation of these studies : 

#ASCO26 #gyncsm Distillation Rosella / Chipro and Chrono Dr Fuh pic.twitter.com/iDr5CQbmRR

— Dee Sparacio (@womenofteal) May 29, 2026

Ovarian Cancer Phase 2 MIRV trial Abs 5506

#ASCO26 #gyncsm Gyn Onc Oral Abstracts
5506 A randomized phase II trial of mirvetuximab soravtansine in folate receptor alpha (FRα)–high recurrent OC eligible for platinum-based chemotherapy (MIROVA/AGO-OVAR 2.34). Higher response rate did not translate to prolonged PFS pic.twitter.com/nB1tXrCzmc

— Dee Sparacio (@womenofteal) May 29, 2026

 

I'll post over the next few days other ASCO sessions including - Rapid Oral Abstracts, Surgery vs NACT, and the Poster Session. 

Dee

Every Day is a Blessing!  

Looking Forward to #ASCO26

This year's ASCO Annual Meeting runs from May 29 - June 2, 2026 in Chicago. The theme this year is "The Science and Practice of Translation:Improving Cancer Outcomes Worldwide". 

I will be attending virtually, so I know I will experience FOMO when I see the postings by other cancer advocates on social media. I will not miss the long walks to get to sessions in the various buildings at McCormick. But I will miss meeting up with other cancer advocates in the ASCO Advocate Lounge and interacting with gyn cancer researchers who through the years have become friends. 

There are a few new ASCO Voices that I look forward to following this year on X including @DrBarbiOnc, @NazliDizman ,  @Ramila, @YGaritaonaindia  and @DrSAHAddad. I recommend you follow them too, 

I recently planned my attendance to focus on ovarian cancer session. 

Friday May 29  

Gyn Cancer Oral Abstracts 3:45-4:45 (ET)  Livestream 

Sat May 30 

Gyn Cancer Rapid Oral abstract Session 9am (ET)

Opening Session  Livestream 

ctDNA in Clinical Practice 9am Livestream

Rare Gyn Cancers 5:45 

Antibody Drug Conjugates 5:45 Livestream 

Sun May 31 

Let's Debate: Upfront Surgery Versus Neoadjuvant Chemotherapy in Advanced Ovarian Cancer

State of the Art: Therapeutic Strategies on the Horizon for Gynecologic Malignancies

Monday June 1 

New Horizons for Hereditary Cancer Syndromes  

Gyn Cancer Poster session  ( posters available day of session) 

 

I'm ready to listen and learn. 

If you are attending in person please use the #gyncsm hashtag in your social media posts. I'll be posting highlights from the meeting following ASCO. 

 

Dee Sparacio

Every Day is a Blessing! 

 

 

 

Prompted by a hashtag!

For World Ovarian Cancer Day on May 8th this year, OCRA ran a campaign called #ReachForTheScars. OCRA's goal with this program was to spotlight the stories, experience and the physical visible and invisible scars of women with ovarian cancer .

We who have been diagnosed have scars that are visible - although we may choose to hide those and some scars that are invisible. Your life being on the line can be a stressful and dare I say traumatic experience for those diagnosed with ovarian cancer. So with these scars there are stories. Here is mine once again. 

For World Ovarian Cancer Day, I chose this year to do a quick watercolor painting of my scars as part of the #ReachForTheScars campaign. These scars are hidden under clothes most of the time. You will not see these scars since you won't find me wearing a bikini or crop shirts. 

The first scar was the vertical one, made in 2005. It came after an hours long surgery - hysterectomy, oopherectomy and debulking surgery for stage 3B high grade serous ovarian cancer. This one healed over time as I continued treatment with nine cycles of carboplatin and taxol. In 2006 there was no evidence of disease. 

I recurred in 2008. The lesions that appeared on my liver and spleen were discreet,  so surgery was an option. I had choices : chemo ( carbo / taxol again) first then surgery, chemo first then surgery or a clinical trial which included bevacizumab.  I chose the surgery first which was done by a surgical oncologist along with my gyn onc. That surgery is what led to my second scar, a  horizontal one.  The surgeon removed my spleen on the left side of my abdomen and resectioned the lower lobe of my  liver which was on the right side of my abdomen. Their removal at the same time is why my OC scars now look like a T. 

Along with other cancer survivors, I carry invisible scars too. I continue to fear a recurrence. The fear is not as strong as in the early years of my survivorship but there are times when news of another long term survivor recurring after 15 years brings it back into the forefront.  I deal with some neuropathy in my toes. I have learned to deal with it by buying shoes with larger toe boxes. I admit they are not the most fashionable shoes but they work for me. And let's not forget how I still forget the names of things.  Thanks chemo brain!

I had thought that those two scars would be my last but just this week I have gained a new one. In April, I pointed out a new pink rough spot on the back of my arm to my dermatologist. After a biopsy came back that the spot was basal cell carcinoma, I decided to have incisional surgery this week to have it removed . This scar will be more visible due to its location and may lead to people asking questions about it. That is OK though. Then I can tell them how important it is to check your skin and see a dermatologist if you see anything new or a spot that changes in appearance. As we head into summer -my advice is to wear sunscreen , hats and spf 50 clothing when out in the sun for a period of time. 

 Do you have hidden scars caused by ovarian cancer? Share them in the comments. 

 Dee

Every Day is a Blessing! 

 

 

News From the SGO Annual Meeting 2026

I was excited to be attending the marriage of my nephew in North Carolina the weekend of April 11th. At the same time, the SGO Annual Meeting was taking place in Puerto Rico. I have followed news from the SGO meeting for many years and been an active patient advocate member since 2020. I even attended a few annual meetings in person.  I always enjoyed learning about the latest research and making connections with gyn oncs, researchers and other advocate members. 

This year's meeting theme was "Advancing Science. Empowering Teams. Embracing Change". Since I did not attend the annual meeting in person I will share information from a number of different sources regarding ovarian cancer research presented that weekend.

MedPage 

Chemo Combo Wins in Ovarian Cancer, but Single-Agent Therapy Still in the Game-NRG-GY019

https://www.medpagetoday.com/meetingcoverage/sgo/120749  Low Grade Ovarian Cancer

 

"chemotherapy plus letrozole as standard of care for low-grade serous ovarian carcinoma (LGSOC), as letrozole monotherapy failed to meet non-inferiority requirements for progression-free survival (PFS). However, a subgroup analysis showed a 50% reduction in recurrence with single-agent letrozole in patients who had no gross residual disease after surgery. Analysis of that subgroup -- comprising almost two-thirds of the patients randomized to letrozole monotherapy -- yielded a hazard ratio (HR) within the non-inferiority range." 

 

Novel Regimen Boosts Survival for Recurrent Platinum-Resistant Ovarian Cancer

 https://www.medpagetoday.com/meetingcoverage/sgo/120748

 

"Adding the glucocorticoid receptor antagonist relacorilant (Lifyorli) to nab-paclitaxel improved median overall survival (OS) by 4 months versus nab-paclitaxel alone. The regimen received FDA approval in March on the basis of an improvement in progression-free survival (PFS)." 

 

X 

  

🚨 Updated results from the phase 2 RAMP-201 trial are here!

Avutometinib and defactinib elicited an ORR of 31%, a DOR of 31.1 months, and an mPFS of 12.9 months in patients with low-grade serous ovarian cancer.https://t.co/sDwXDQfknx#SGOAM2026 #gyncsm #OvarianCancer…

— CancerNetwork® (@CancerNetwrk) April 11, 2026

Fantastic work @NiteckiRoni @MDAndersonnews Facilitated cascade #genetictesting improved testing in families of #BRCA carriers. #SGOAM2026 @gynoncjnls #gyncsm pic.twitter.com/bqdosx29vV

— Nicole D. Fleming MD (@nicoleflemingmd) April 11, 2026

#KEYNOTEB96#Pembrolizumab + paclitaxel +/- bev 🆚 paclitaxel +/- bev

For CPS >/=1
✅ median PFS 8.3mo vs 7.2mo
✅ median OS 18.2mo vs 14.0 mo!

✅ equally as impressive numbers for the ITT population

A breakthrough for immunotherapy in #platinumresistant #OvarianCancer!

3/6 pic.twitter.com/QvPWabUhMZ

— Eric Rios-Doria, MD (@RiosDoriaMD) April 11, 2026

@NiteckiRoni @MDAndersonnews highlights how streamline medically directed #cascadetesting for #BRCA carriers leads to ⬆️ familial compliance of follow through 🧬 testing by family members. Scaled implementation takes time. HOW we deliver #gyncancancer care matters! pic.twitter.com/1XFdsbZaSy

— Dr.Monica Avila (@MAvilaMD) April 11, 2026

 

BEHOLD-1 at #SGOAM26: mocertatug reztecan, a B7-H4 ADC, showed promising activity in PROC and EC!

✅ ORR 62% in PROC
✅ ORR 67% in EC
✅ Rapid responses with manageable safety

A notable report for B7-H4–targeted therapy. @SGO_org #gyncancer pic.twitter.com/i2I0NLqg3d

— Taro Yamanaka (@TaroY_oncology) April 12, 2026

SYS6043, a B7-H3 ADC, showed encouraging activity in previously treated gynecologic cancers at #SGOAM26.

✅ ORR 45.7% in OC
✅ ORR 33.3% in EC
✅ ORR 35.9% in CC
✅ Manageable safety profile@SGO_org #gyncancer pic.twitter.com/SVxBJ34D9E

— Taro Yamanaka (@TaroY_oncology) April 12, 2026

#NRG-GY033 at #SGOAM26: Exemestane + darolutamide + leuprolide acetate in recurrent adult-type ovarian granulosa cell tumor
✅ ORR 6.25%, below the prespecified threshold
✅ Stable disease in 62.5% pts
Negative trial. How can hormonal therapy in AGCT be further advanced? @SGO_org pic.twitter.com/wErfj0WrGb

— Taro Yamanaka (@TaroY_oncology) April 11, 2026

Article from The Gynecologic Oncology Journal  @gynoncjnls

Identifying ovarian cancer with AI analysis of abdominal CT scans

https://www.sciencedirect.com/science/article/abs/pii/S0090825826007778 

Conclusion:

"Deep Learning using segmented abdominal-pelvic CT scans, particularly convolutional neural networks-based architecture, demonstrate strong potential for distinguishing Epithelial Ovarian Cancer (EOC)   from benign pelvic masses. Further studies are needed to create accurate Deep Learning models for early EOC detection. "

SGO Meeting News https://www.sgomeetingnews.org/ 

Mirvetuximab soravtansine plus carboplatin in folate receptor alpha-expressing recurrent platinum-sensitive ovarian cancer - late breaking abstract 

"The study included 125 patients with measurable, recurrent FRa-expressing PSOC and one prior line of platinum-based chemotherapy. ...MIRV plus carboplatin in recurrent  platinum-resistant ovarian cancer (PSOC) with an FRa greater than or equal to 25% can be safely administered with minor dose modifications and proactive adverse event management. It also achieved favorable objective response rates and progression-free survival rates, showed comparable efficacy to pre-poly (ADP-ribose) polymerase (PARP) inhibitor era benchmarks, and established the safety and efficacy of continuing MIRV after carboplatin for the first time.  The study suggests it can also be safe and effective to combine with carboplatin in the treatment of PROC, and to continue administering MIRV as a maintenance therapy after treatment with carboplatin."

A Clearer Signal in Ovarian Cancer 

https://www.sgomeetingnews.org/home/article/22964575/a-clearer-signal-in-ovarian-cancer 

 

"Emily O'Brien, MD, reported on the clinical performance of a ctDNA whole genome assay in patients with Stage III and IV ovarian cancer undergoing neoadjuvant chemotherapy (NACT), interval debulking surgery (IDS), and adjuvant chemotherapy (ACT).  ...The study followed 15 patients with advanced-stage, high-grade serous ovarian cancer treated between 2022 and 2024. ...Patients with persistent ctDNA positivity were more likely to have platinum-resistant or refractory disease, while one patient with platinum-sensitive recurrence demonstrated transient ctDNA clearance before becoming positive again at recurrence, suggesting ctDNA may capture evolving tumor biology in real time." 

ctDNA is still investigational and more testing needs to be done but there is promise that the clearance of ctDNA could lead to more personalized treatment. 

 If you attended the meeting please share in the comment section which studies you found most impactful to patient treatment. Thanks.

 Dee

Every Day is a Blessing! 

 

Why Do You Write?

I just read a post Tiny Stories: Why I Write by my friend, Marie Ennis-O'Connor  She wrote her piece because of a prompt suggested by Linda Caroll  https://substack.com/home/post/p-189895052 to write a tiny story no greater than 250 words. 

Here is my response to that same prompt. 

I write because back in 2005 I was diagnosed with stage three ovarian cancer. And I felt alone. I had surgery , chemotherapy, and countless scans and tests. I spoke on the phone to one survivor of  ovarian cancer during my treatment. It was almost a year later until I met in person a survivor of ovarian cancer. 

At first when asked to share my story I said no.  

Then my gynecologic oncologist shared information about the LiveSTRONG Summit with me. I was lucky to be chosen to attend. I came home feeling energized and ready to share my story and advocate for a screening test for ovarian cancer. 

In December of 2007, I started writing this blog. I  shared how it felt to be a survivor of a cancer that I had only a 30% chance of surviving 5 years. I talked about research. When I had a recurrence I shared the good and the bad - the surgery, loosing my hair again,  the severe allergic reaction to carboplatin and the neuropathy.  I wrote to share information about ovarian cancer with women in my state and the world. Through this blog, I  met women  and their caregivers in the US, UK and Canada through this blog. 

By writing , I no longer felt alone. But even better than how I felt,  I knew I was reaching other women and supporting them. 

It is now nineteen years and I am still writing and making connections and feeling a part of a larger community and I am still advocating for research to develop a screening test for OC. 

Dee

Every day is a blessing!