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.   


Dee 

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:

Saturday

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)

Sunday

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)

Monday 

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.

Dee
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 https://www.rarediseaseday.org/ .

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? 

Dee
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. 

Dee

Every Day is a blessing.

 

Wednesday, January 3, 2024

So Long 2023 - Welcome 2024 !

For those of you have followed this blog know that I don't make resolutions for the new year but rather I make a list of  aspirations.  When I was thinking about what aspirations should be on my list this year,  I realized I still have not visited Maine.  How long has visiting Maine been on my list? I went back and checked my posts and Visiting Maine shows up for the very first time in my first post of 2014. 

From Only In Your State website

It has appeared on the list every year since then - 10 years! And it will stay on the list this year too, along with :

Spend more time with my children, their spouses and grandchildren.
Practice more watercolor painting.
Spend less time on social media and more time connecting in real life.
Continue to play Pickleball, practice Yoga and dance in Jazzercise class 
Continue to take long walks with my dog Amber - a great quiet time in my day.
Continue to do the advocacy work that brings me joy - grant reviews and learning about and sharing research news

What do you aspire to do?  Remember it might not happen right away  but we can always reach for it. 

I've seen some folks pick a word of the year.  I thought that silence would be a good one - sometimes I am so busy doing things that I never experience silence except for when I take a walk with my dog.  I read a list of words a friend share with me and thought boundaries would be a good word too. I need to set better boundaries when it comes to advocacy vs other aspects of my life. Then I thought I would try using a word of the year generator and it gave me :

PROSPER

I like it! I can aim to prosper in so many different areas of my life. Have you picked a word?

Happy New Year! 

Dee
Every Day is a Blessing!


Sunday, December 31, 2023

Ending Another Year of Blogging

 

On December 30, 2007 , I started writing this blog. It began as a place to share my story, support women diagnosed with ovarian cancer in New Jersey and to raise awareness of the disease. It has developed over time to be a place where I not only share my personal news but also share all aspects of cancer research from bench studies to clinical trial results. I have also reported news about latest treatments after attending oncology meetings.

This year's popular posts were 

Ten Years as a Community and Chat 

ASCO23 Day 4 (6/5/23) Gyn Cancer Posters, Poster Discussion session & Misc topics

The Importance of Obstacles - 18 Years Later

Authoring this blog has opened doors for me in cancer advocacy and I appreciate all of you who have read it through the years. It has been a privilege.
 
Wishing you good health and happiness in 2024!
See you next year.  
 
Dee
Every Day is a Blessing!

 

 

 

 

 

 

 

 

Monday, December 25, 2023

Joy and Peace 2023

Today my family and I celebrate Christmas, the birth of Christ. Whether you celebrate Christmas or Hanukkah or Kwanzaa or Diwali or another holiday, I wish you Joy and Peace this Season.  


 












Dee

Every Day is a Blessing!