Thursday, March 28, 2024

5 STARS - Rebel Health ... A Book Review

I first met Susannah Fox at MedX in 2012 and have followed her career and blog ever since. Susannah learned from patients and online communities as she directed the PEW Research Center's Internet Project health portfolio, was  entrepreneur-in-residence at the Robert Wood Johnson Foundation and as former Chief Technology Officer for the Department of Health and Human Services under the Obama Administration.  When I heard the she was writing a book I couldn't wait to read it. Rebel Health is not just about advancements in health care but rather as it states on the cover it is A Field Guide to the Patient-led Revolution in Medical Care. How have patients when given a health challenge can lead a revolution?  They ask "how might I improve my device?" ... "Get the support I need?"... "Find others with my rare disease" etc  and then go do it!

I placed a hold on the book at my local library when it was published in February of this year.  I picked up the book and read it. Then I went on Amazon and bought my own copy so I could highlight portions I found most interested. There are a lot of highlighted sections, by the way.

Some sections of the book dealt with patient-led developments in cancer care such as the cancer hashtag communities on X/Twitter. But I also found interesting sections on other health issues. One condition highlighted was insulin dependent diabetes. The book describes how Dana Lewis (who I also met at MedX) wanted her glucose monitor to have a louder alarm. She needed access to her monitor's data but the device companies said no. So she networked with others and built a custom solution.  The book also includes examples of caregivers and rare disease survivors who made a difference in their lives or the lives of their loved ones by being leaders in the patient-led revolution

Like Lewis and Liz Salmi, a brain cancer survivor and founder of the #btsm community, others are leading the revolution and becoming experts. Fox classifies these expert patient advocates as four arche-types:

Seeker  - Go on the hunt when things are not right

Networker - "Connection is the antidote" 

Solver - attack the problem, identifies the problem, tests and develops a solution

Champion - takes ideas and scales up the innovation

I describe myself as both a Seeker and as a Networker. I consider myself a cancer research "hound"(Seeker)  and along with Christina Lizaso we bring people diagnosed with gyn cancers together with researchers and clinicians in the #gyncsm community on X (networker). Which archetype are you?

If you are a patient, caregiver or advocate don't shy away from a challenge rather read this book be inspired and guided to lead your own revolution, solve problems, give hope and make a difference in your life or the lives of others. 


Every day is a Blessing! 

Tuesday, March 19, 2024

2024 Annual SGO Meeting Monday March 18, 2024

This was the final day of the 2024 SGO meeting.

I caught the tail end of the SGO Business meeting which included the passing of the gavel from this years President , Dr Angeles Alvarez-Secord to Dr Amanda Fader.


The next session, Doctor as Patient:Michael Frumovitz, MD,MPH,MS,CPXP was a moving presentation. Dr Frumovitz shared with his medical colleagues what his experience was as physician and  stage 3 pancreatic cancer patient. He mentioned how cancer patients run the gamut from those who are private to those who are public about their experiences.  

The Rapid Fire Poster Optimizing Surgery, Recovery and Survivorship followed.
Endometrial Cancer Assessment



 Heated IP chemotherapy (HIPEC)  during interval cytoreductive survery was associated with imporved survival.

 Criteria to determine need for ileostomy. 

Comparison of 2 drugs used to prevent venous thrombosis. 

Using Text messaging to measure PRO. 

Barriers to fertility preservation

Memory Impairment in post menopausal women was associated with increased age and comorbidity not chemotherapy. 

Another advocate presentation on peer support for Black women with endometrial cancer.  


The Fireside Chat: Critical Issues in Gyn Cancers and the Power of Shared Purpose panel included representatives from other gynecologic cancer organizations. They see the need to work together in many areas including improving recruitment of underrepresented peoples to clinical trials. I was pleased to see Annie Ellis, Patient Advocate and Survivor approach the mic at the end and share her thoughts. 

There was a moving tribute to former SGO President , Dr Wendy Brewster who passed away from pancreatic cancer. 

 Dr Secord gave her Presidential address. She certainly helped to grow SGO with now over 3000 members. 


Poster session 2 included the abstract that survivor/advocates Annie Ellis, Lynda Ryan, Adrienne Moore and I , submitted.   It was so exciting to have our abstract accepted for this poster session.

The final session I attended was Scientific Plenary V Late Breaking Abstract Session 2 .

Endometrial Cancer  

Another Patient presenting her experience in the DUO trial.

Ovarian Cancer Duo trial using Durvalumab , Bev and Olaparib

Chinese study of Niraparib maintenance and Individualized Dosing

The use of a P-53 reactivator in a PH 1 trial. 


Thanks SGO,  especially Dr Pothuri, Dr Powell and the entire planning committee for such a well run and informative meeting. Thanks again for going our of your way to including so many survivor-advocates in  important meeting presentations, on panels and presenting their posters.

Hope to see you next year in Seattle. 


Every Day is a Blessing! 

2024 SGO Annual Meeting Sunday March 17th Session Review


I started the day off attending an ISS ( Industry Sponsored Symposium) which reviewed the use of ADC's ( antibody drug conjugates ) in gynecologic cancers. The session included patient case reviews where the audience and speakers were asked what treatment they would choose for a patient with a specific treatment experience and co-morbidities. It was very interesting to "listen in" on the discussion. 

The next session was a review by the editors of Gynecologic Oncology and Gyn Oncology Reports of their magazines in terms of readership, reviews and future expansion of clinical guidelines. 

The Presidential Invited Speaker was Erin Diehl who presented on  "F" Words at Work. With a bit of improv she talked about failure, #failfluence and the importance of reframing the failure to improve ourselves.

Focused Plenary IV on ctDNA was an interesting group of abstracts all dealing with using circulating DNA for prediction of disease.


This study included a new term for me - Fragmentomics -  the investigation of fragmentation patterns of cell-free DNA (cfDNA). 

This was an interesting proof of concept study

 I also attended the Late Breaking Abstract Session.  

This was an interesting study of using Avutometinib plus defactinib ( Kinase inhibitors)  for Low Grade Serous Ovarian Cancer.

This study did not reach the endpoint expected so the study was ended. We may want all the studies to be successful but we can always learn from studies that are not working. 

Focusing on ARID1A in ovarian clear cell and endometriod endometrial cancers. 

This study compared different diagnostic tests for ovarian cancer in post-menopausal women. 


I was pleased to see the rarer ovarian cancers being discussed.

Thanks to Dr.Monica Avila (@MAvilaMD) and CrozrX (@CrozrX) for sharing their insights into the studies presented. 


Next post will be what I learned on Monday the last day of the meeting.


Every Day is a Blessing!


Monday, March 18, 2024

2024 SGO Annual Meeting Saturday March 16th Session Review


I virtually attended five sessions on day one of the SGO Annual Meeting -  the Opening Ceremony, News We Can All use (Plenary), Moving the Needle (Plenary), Science to Drive Purpose(Plenary)  and Together We Tackle Cancer Rapid Fire Poster Sessions. (Saturday March 16,2024.)

Please be patient while reading this post since it may take some time for all the X posts and photos to download. 

I'm going to start this post by giving a shout out to the patients and advocates involved in presenting on Saturday.  Check out Susan, Linda, Shawn and Jennifer!

Here are just a few of the 60 tweets & retweets I shared during the Saturday meeting.  

Endometrial Cancer

Ovarian Cancer 

HER -2 Expressing Tumors 

Cervical Cancer

Ovarian Cancer 

Endometrial Cancer

Ovarian Cancer

 Recurrent Endometrial, Ovarian, Fallopian Tube, or Primary Peritoneal Cancer

Ovarian Cancer

Endometrial Cancer

Together We Tackle Cancer Session:

I'll keep you updated on what I learned on Sunday and Monday in the next few days.   


Every Day is a Blessing!

Tuesday, March 12, 2024

Preparing For This Year's SGO Annual Meeting

I will be attending this year's SGO Annual Meeting virtually. It is being held in San Diego, March 15-March 18, 2024. On Friday, March 15th the 2024 Patient and Advocate Education Forum will also be held, in San Diego. The Forum is sponsored by the Foundation for Women's Cancer. I attended last year's forum and it was informative and allowed time to network with other patients , advocates and caregivers.



I received the link to the meeting app today so I started making my schedule and looking at sessions I'm interested in listening to. I will be posting on X using the #gyncsm from the sessions that occur in the main hall (F) as they occur live. Other segments of the meeting will be available for me to look at online after they are held and I will catch up on those after the meeting. 

I am happy to see many sessions include patient advocates including my friend Susan Leighton, presenting on Effectiveness of “Survivors Teaching Students®”: A patient-centered experiential educational model of ovarian cancer for rising healthcare professionals.  Thanks SGO and FWC!

I am also pleased to share that an abstract that Annie Ellis, Adrienne Moore, Linda Ryan and I submitted will be presented during the poster session on Monday, March 18th (Hall GH). I'll share more about that poster titled

Do it!': Gynecologic cancer clinical trial participants' advice to others and perspectives

on the day it is presented.

Here are some of the sessions I look forward to listening to:


Scientific Plenary I: News We Can All Use 
  • Efficacy and safety of trastuzumab deruxtecan in patients with HER2-expressing solid tumors: biomarker and subgroup analyses from the cervical, endometrial, and ovarian cancer cohorts of the DESTINY-PanTumor02 study
Scientific Plenary II: Moving the Needle Together  
  • Patient-Reported Outcome Results from Phase III MIRASOL Trial of mirvetuximab soravtansine vs. Investigator’s Choice of Chemotherapy in FRα Positive Platinum-resistant Ovarian Cancer 
  • Efficacy and safety of alpelisib plus olaparib versus chemotherapy among patients with platinum-resistant or refractory high-grade serous ovarian cancer without BRCA mutation: Primary analysis of the EPIK-O trial 
  •  A phase II/III study of cediranib and olaparib combination compared to cediranib or olaparib alone or standard of care chemotherapy, in platinum-resistant ovarian cancer (NRG-GY005)


Presidential Invited Speaker: Erin Diehl: "F" Words at Work Supported by the Wellness Committee and N.E.D. 

Focused Plenary IV: CtDNA: Molecular Mirrors & Markers 

  • The Prognostic Value of Circulating Minimal Residual Disease in First-Line Treatment of Ovarian Cancer 
  • Utility of ctDNA as an early predictive biomarker of response to radiation in gynecologic malignancies 
  • Monitoring Minimal Residual Disease Using Circulating Tumor DNA in Patients Treated Long-Term with PARP Inhibitors for Ovarian Cancer 

Scientific Plenary IV: Late Breaking Abstract Session 1

  • Clinical activity of tazemetostat, an EZH2 inhibitor, among patients with advanced endometrioid endometrial cancer and ovarian clear cell carcinoma with and without ARID1A mutations (NRG-GY014)


Doctor as a Patient: Michael M. Frumovitz, MD 

Tribute to Dr. Brewster – Stephanie Blank, MD, Amanda Nickles Fader, MD, S. Diane Yamada, MD, and Angeles Alvarez Secord, MD

Presidential Address: Angeles Alvarez-Secord, MD
Scientific Plenary V: Late Breaking Abstract Session 2 - The Turning Point Don't Be Left Out
Additional sessions I'll view online include those addressing disparities, ADCs( antibody drug conjugates), and clinical trial design. 
Now I just have to remember the three hour time difference so I don't miss any live sessions.

For those attending in person, please us #gyncsm in your posts on X so I can hear what you find valuable.  "See" you all next weekend.

Every Day is a Blessing!


Monday, February 26, 2024

Rare Disease Day 2024



February 29th is Rare Disease Day®.

Rare Disease Day is an annual awareness day dedicated to raising the understanding of rare diseases and calling attention to the special challenges faced by patients and the community. Worldwide 300 million people are living with rare diseases.  To learn more about rare diseases and to read stories of those living with rare diseases visit the Rare Disease Day website at .

These gynecologic cancers,

are considered RARE by NIH's Genetic and Rare Diseases Information Center

In the US, diseases that affect less than 200,000 people are considered rare.In the EU a disease is rare if it affects no more than 50 per 100,000 people.  In 2023, roughly 19,710 women in the US were be diagnosed with Ovarian cancer. Ovarian Cancer is a rare disease!

Why is Rare Disease Day important? 

Research funding to develop screening tests or treatments in rare diseases may be more limited than more common diseases. Due to the limited number of people with the rare diseases accruing to clinical trials is difficult. Trial designs are being modified to better understand rare diseases. As a person with a rare disease, especially people of color and indigenous people, it may be more difficult to find treatment centers and emotional support at diagnosis.Raising awareness through this day is important in the US and globally.

You may find additional information about Rare Disease Day on the  NORD - National Organization for Rare Disorders, Inc website

Do you have a rare disease? What would you like others to know about your disease? 

Every Day is a Blessing!


Thursday, January 25, 2024

Memories and Change

One thing I can say on this journey with cancer is that Change is Inevitable. 

In 2006,  after I finished treatment for ovarian cancer,  I started attending a gyn cancer support group at  The Wellness Community of Central New Jersey which later became the Cancer Support Community of Central NJ  and is now Crossroads 4 Hope. I was so happy to be with other women who had been diagnosed with a gynecologic cancer. They "got it". I would drive from Edison to Bedminster to touch base with some amazing and inspiring women.  I attended art classes that were offered, educational sessions and my favorite presentation "Bogeyman in the Closet "dealing with the worries of recurrence.

I stopped attending the group during my recurrence and started up again when I finished treatment.

As my advocacy work grew, I not only attended the support group but also made presentations to other cancer survivors too. In 2008, after attending two LiveSTRONG Survivor Summits, I presented Advocacy 101. In 2011, I spoke on Reading Between The Lines in which I offered advice on how to critically read cancer research news.  In March 2012, I presented Survivor to Survivor: Understanding Cancer Research, on understanding how researchers report trial results in journal articles. 

After moving further from Bedminster,  I missed a number of in-person meetings but managed to attend a few every year. I loved this group. There were a few women who had been going for a number of years like me and a new group but it didn't really matter because there was always an atmosphere of strong support and understanding. 

When the Covid Pandemic started all the groups were switched to online Zoom meeting. I once again joined in.  The women in this group were newly diagnosed ovarian cancer and endometrial cancer survivors. I was the "old timer". We spent time talking about treatments, and genetic testing along with Covid testing, masking, vaccinations and our higher risk of contracting Covid. We lost two women during Covid. Although I never met them in person, I still felt their loss. 

In December,  the last meeting of the gyn cancer support group was held. There were 3 women in person and two of us online. The five of us were the core group on Zoom during Covid. There is hope to have some special programs for gyn cancer survivors in the future. In the meantime we can stay in touch through email. I am sad but understand the reasons for stopping and I appreciate the opportunity to have met so many amazing women and their families too, through this support  group.

Today as I was checking my contact list on my cell phone for a friend's number,  I ran across Lois's number, then Dawn's , then Carol's , then Rosemary's, then Diane's.  All these women were friends and their lives were cut short due to ovarian cancer. Some of them almost 10 years ago some two years ago.   I hesitated for a little bit as I came across each name. I thought of the impact they made in my life as survivors, advocates and friends. Wonderful memories of fundraising events sharing delicious food, meetings in the diner, support group meetings and KOH walks. We were all very different and I am not so sure our paths would have crossed if we had not all had a cancer diagnosis but I am so glad they did. 

Then I hit delete. I don't need their numbers, I just need the memories of having them in my life. 


Every Day is a blessing.