Showing posts with label research. Show all posts
Showing posts with label research. Show all posts

Monday, September 1, 2025

September is OVARIAN CANCER AWARENESS MONTH

I am not sure where the month of August went and here we are starting September. If you have followed me for any period of time you are probably already aware that September is Ovarian Cancer Awareness Month. Teal is the awareness color for ovarian cancer. 

Teal Awareness Ribbon for Ovarian Cancer Awareness Month 

 Let me start with these important facts:

There is no screening test for ovarian cancer. 

Approximately 20,890 women will be diagnosed with ovarian cancer in the US in 2025. *

Approximately 12,730 women will die in the US in 2025 due to  ovarian cancer.* 

 

I have been an advocate for ovarian cancer research for 15+ years While we have made strides in treatments( VEGF inhibitors, Anti-body drug conjugates,  immunotherapies) there is no cure.  That is why raising funds for research is so important. 

This year due to NIH funding cuts raising awareness of ovarian cancer and more importantly funds for research take on a greater urgency. I will be posting symptom and risk information as well as other resources throughout the month in my small effort to raise awareness.  

I will be raising funds for research this year by walking on Sept 28, 2025 at the Kaleidoscope of Hope Ovarian Cancer Foundation walk at Loantaka Brook Park in Morristown. Join me, my family and friends as we walk as Team Determined. We are walking to honor the memory of a dear friend, Mary Lu, who passed away in July due to ovarian cancer. Donate to Team Determined at https://www.classy.org/team/766060

If you live in other areas of the country, check to see if there will be walks or other fundraising events being run by ovarian cancer organizations by you. Or donate to support research through OCRA or Foundation for Women's Cancer .

Thank you in advance. 

 Dee

Every Day is a Blessing!  

* https://www.cancer.org/cancer/types/ovarian-cancer/key-statistics.html

 

 

Thursday, April 24, 2025

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  
 
 
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!

 

 

 

Friday, September 27, 2024

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!

Friday, May 19, 2023

Prepping for ASCO 2023

The  ASCO Annual meeting begins two weeks from today! This year I will attend virtually. I'll miss interacting with so many amazing researchers and getting to network with some outstanding advocates in the Advocate Lounge. 

You will catch me tweeting from the Live sessions and retweeting attendee's tweets for those sessions which are On Demand. Once the On Demand sessions are over they will become available for me to watch online so I can tweet or summarize them on this blog.  

Be sure to follow #gyncsm, #ASCO23 and ASCO Featured Voices, to be announced shortly by ASCO.

Since I am registered, I was able to set up an agenda using the Annual Meeting Program Guide https://meetings.asco.org/meetings/2023-asco-annual-meeting/299/program-guide.

 Here is my schedule so far: 

Friday 

 
Saturday 

 

Sunday

Monday 


 

There are also some sessions that are not specifically about gynecologic cancer that I've added to my agenda. 

On Demand session Improving Cancer Outcomes by Addressing Social Determinants of Health

On Demand Developing Sustainable Cancer and Aging Programs

On Demand Poster Discussion -Prevention, Reduction and Hereditary Cancer

There are a number of published abstracts/ articles in the ASCO 2023 Educational Book, which you can view at https://ascopubs.org/toc/edbk/current . You might want to check out  (e10035)  Patient Advocates and Researchers as Partners in Cancer Research: A Winning Combination if you are an advocate or researcher wanting to engage advocates in your research.

Be sure to check back during and after the meeting for blog posts on the topics / sessions I mentioned above. 

Are you an advocate who is presenting or on a panel? Let me know so I can be sure to watch. 

Dee 

Every Day is a Blessing! 


Thursday, March 30, 2023

SGO Annual Mtg 2023 Highlights - Participation

I returned recently from an exciting and informative SGO Annual Meeting. Over the next few days I will highlight research results that I found most impactful to patients, survivors and caregivers.  This blog post will be on participation and will cover how other advocates and I  participated in the meeting. 

The Foundation for Women's Cancer held a Patient Education Forum on Friday. They presented information on ovarian, endometrial, cervical rare gynecologic cancers as well as information on exercise, advocacy  and other topics. Some survivors shared the story of diagnosis and treatment. The room was filled with survivors, caregivers and advocates as well as organizations that support women with gyn cancers. 

Later that evening advocates were invited to the Foundation for Women's Cancer reception. Advocates were able to meet each other as well as gyn oncs, researchers and leadership of the Foundation. 

Saturday was a busy day. As a member of the SGO Communication Committee, I had the opportunity to participate in the  Education Forum Media Readiness session. I was part of a role play session on how to use different techniques such as pivot, personalize, deflect,acknowledge, and broaden when being interviewed by the media. As an advocate I am asked to comment on new treatments or breaking news and the tips shared during the session were helpful to me.


During the very next session Annie Ellis, survivor and advocate, presented Long-term survivors speak: perspectives on progress, during a Scientific Plenary Session. Annie and I  held a roundtable Zoom meeting and also surveyed long term ovarian cancer survivors about progress,  patient needs, and what ovarian cancer survivors want their doctor to know. It was so exciting to see Annie present and to hear the applause and comments that followed!

 

 

If you have questions about our abstract, don't hesitate to reach out to me for further details. 

On Sunday, the  Patient Education Committee held a advocate poster walk in which advocates were able view posters and to listen and ask questions of the poster authors. We were also given the opportunity to vote for the  Patient Advocate Hope Award winner. It was wonderful to see so many early career clinicians and researchers present their research. 

 



 I'll continue my highlight blog posts over the next few days.


Dee
Every Day is a Blessing

Sunday, March 19, 2023

SGO Meeting Preparations

 

 

Thanks to support from my Cancer Center, I am heading south to Tampa for the SGO Annual Meeting on Friday. The theme of the meeting is Patients | Purpose | Progress. I'm so excited to be meet up with other survivors/advocates and to learn from the researchers who are making advances to improve the care of patients diagnosed with a gynecologic cancer. 

When I arrive on Friday, barring any airline delays, I hope to attend at least part of the Patients and Advocates Education Forum and Luncheon. I have attended them in the past and have always found them beneficial. This is the first once to be held in person since Covid began. 

Saturday, March 25th, will be an especially busy day for me. 

As a member of the SGO Communications Committee I will be part of a presentation on Saturday ( 2:45pm Ballroom A) . This Education Forum, Ready for Primetime: Media Readiness will present strategies of how to best respond and state your position when asked questions by the media.  

Following the Forum, the Scientific Plenary II session (East Hall, 4pm) will take place.  Survivor/advocate, Annie Ellis, will be presenting Long-term survivors speak: patient perspectives on progress, an abstract she and I co-authored. I will share more about the abstract after the meeting.

There are a number of other sessions I am looking forward to attending and am busy working on the app to set up my schedule and work in some time to meet up with some of my gyn onc friends. 

On Twitter,  be sure to follow the hashtags #SGOmtg and #gyncsm for news from the meeting. 

I'll be posting highlights here once the meeting concludes.

Dee
Every Day is a Blessing! 



Monday, November 7, 2022

Powell-Drescher Foundation - Ovarian Cancer Research, Advocacy and Education

A few weeks ago I had the pleasure of having a zoom call with Sachia Powell. Sachia is an ovarian cancer survivor, advocate and founder of the the Powell-Drescher Foundation www.powelldrescher.org. We discussed the foundation she founded with Dr Drescher and a number of advocacy and education ideas. Here are two opportunities coming up for advocates.

The Powell-Drescher Foundation is hosting a free Zoom presentation on November 20, 2022, to provide information about research advocacy.  During the Zoom presentation, ovarian cancer researcher Dr. Kristin Anderson will provide information about how to navigate a research conference, as well as details about the AACR’s Scientist-Survivor Program (SSP).  Ovarian cancer survivor/research advocate Annie Ellis will share her experience with the SSP as well as her insights as an experienced research advocate.   To apply to attend the presentation click here
 
Along with that education program the organization will provide details about their new program an opportunity for an advocate to attend the American Association for Cancer Research (AACR) Annual Conference in Orlando in April 2023.To learn more or apply click here. The deadline is December 31,2022. 

You can read more about the organization on their website:  www.powelldrescher.org or follow  them at  @powelldrescher on Instagram  and Facebook, and @powerovarian on Twitter. 
 
 
Dee
 
Every Day is a Blessing! 
 

Monday, February 28, 2022

Rare Disease Day 2022

Rare Disease Day

February 28th is Rare Disease Day®

Ovarian Cancer is a Rare Disease!

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. 

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 2022, roughly 19,880 women in the US will be diagnosed with Ovarian cancer. 

Why is this 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 need to be changed so these trials can take place. As a person with a rare disease, especially people of color and indigenous people, it may be more difficult to find emotional support. This is where online communities are helpful. 

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, September 10, 2020

OC Awareness Month and Memories

This September seems to be flying by. It is hard to believe that we are already at day 10 of Ovarian Cancer Awareness Month.

In the past, I would post almost every day about symptoms, types of ovarian cancers, genetic mutations in ovarian cancer, treatments, awareness organizations, and fundraisers. This year since I missed 10 days already, I will shoot for 4 - one per week.

This year is different in so many ways due to the COVID -19 pandemic. Educational events are postponed, cancelled or offered online. Fundraising events involving large crowds are not taking place. Instead there are banquets and auctions on Zoom. Walks, runs and rides to raise funds for research are all virtual.  I won't be walking with family and friends on the boardwalk to support research through the Kaleidoscope of Hope Ovarian Cancer Foundation. Instead I will be walking by myself, mask on, around my town on Saturday, September 26th.

While we don't yet have a screening test for ovarian cancer, I am happy to see some progress being made in treatments for women with ovarian cancer using PARP inhibitors. I am excited to see teal ribbons in towns in every state in the nation. (Teal is the awareness color of ovarian cancer.) I love to see photos of buildings and bridges outlined in teal lights. Survivors and their families are doing their best to raise funds and awareness of the disease by painting their nails and toes teal, wearing teal ribbon pins and earrings and teal t-shirts and tying teal ribbons around trees and lightposts.

To be honest with you though as much as this month makes me smile with all the teal and fundraising but it also makes me sad. Over the past fifteen years, friendships with many women who were also ovarian cancer survivors came easy. We met at in-person support groups or on Facebook or Twitter or the old ACOR listserv. We volunteered to serve on Boards of local OC awareness organizations. We sat at the same table at fundraising events and would hang awareness ribbons. Many of my friend's lives were cut short due to ovarian cancer, taken too soon from their families and their communities. Janice Lopez is one of those teal women . 

Sparacio and Lopez Families

Our families would gather together in late August to hang teal ribbons in Edison, NJ. We were both diagnosed in 2005 with similar symptoms. We sported our short haircuts together as we hung ribbons back in 2008. But on September 6th, eleven years ago ovarian cancer took her from her family. To honor her they formed the Janice Lopez Ovarian Cancer Foundation. They continue to raise funds for research  and I continue to support their mission.

This year Elie, (in the stroller in the photo) Janice's granddaughter created a PSA for her family's Foundation. Please take a moment to watch. 

I urge you to support ovarian cancer research this month. You can make a difference and save women's lives.

Dee

Every Day is a Blessing!

Tuesday, May 28, 2019

2019 Annual Retreat On Cancer Research in New Jersey


This year's retreat was as informative and interesting as in years past.

The morning began with the Public Forum on ScreenNJ - Cancer Prevention , Education and Detection. Dr A Stroup started off the session talking about cancer burden in NJ. 
NJ Cancer Burden

Cancer Disparaties

Dr M Steinberg talked about Lung Cancer screening and treatment. Lung cancer is the leading cause of cancer death in women. He also made note of the fact that smoking affects nearly every organ of the smokers body. If a smoker stops smoking,  over time the risk of heart attack and stroke will drop. If you have 30 pack years of smoking ( smoke one pack a day for 30 years) then  Low Dose CT screening is available to you as a screening tool.


Screening option

Dr Natalie Pereira discussed Colorectal Screening and noted that it takes about 10 years for a abnormal polyp to become malignant cancer. The risks for colorectal cancer are age, family history, polyps, Lynch Syndrome and eating high quantities of fat or red meat.

Symptoms of colorectal cancer

Screening Recommendations

Dr Kinney shared information on the ScreenNJ Statewide program. Less than 60% of the eligible population in NJ has been screened for colorectal cancer and 10% of the eligible population in NJ has had lung cancer screening. We need to educate residents of NJ that these screening tests are available to them.


The Keynote speech was by Dr Steve Rosenberg, Chief of Surgery at the NCI. He presented an overview of the development of cell transfer therapy. There are a number of Immunotherapies using immune cells to recognize and kill cancer cells . He then focused on using those therapies to treat epithelial cancers. Epithelial cells are found in the linings of most organs - ovaries are one of those organs. Cell transfer therapy has had durable regressions in melanoma and in recent research in other epithelial cancers.


After lunch I listened to a short talk on Nanotechnology Approach for Precision Targeted Therapy for Ovarian Cancer by J Sapiezynski, a student at the Earnest Mario School of Pharmacy, Rutgers. He used liposomes as a dose delivery system for cisplatin and SiRNA.

During the poster session I was able to chat with researchers who presented the results of the  Gynecologic Cancer Patients' and Supporters' Reports of Sharing (and Holding Back)Cancer-Related information during Onoclogy Visits Study. Eighteen patients ( during cycles 2 and 5 of their treatment)  and sixteen caregivers took part in the study. The theme that "Everything is easy to share" showed that patients found it easiest to discuss side effects with their oncology team. Yet there was also a theme of "Nothing held back...except" when patients or caregivers felt uncomfortable sharing some information - such as embarrassing information or prognosis.

I am so pleased to see that important research is taking place right here in my home state.

Dee
Every Day is a Blessing! 

Friday, September 29, 2017

Day 29 A month of Teal : Your Verse - My Verse

"What will your verse be? 
Each of us has something to share. A voice, a passion, a perspective. The potential to add a stanza to the world's story.   ..."

Take a few minutes to watch this ad. Don't skip it - listen to the words and look at the images.

Apple - iPad Air - TV Ad - Your Verse from EPC Group.net on Vimeo.

Apple ran this series of advertisements for the Apple iPad Air in 2014 . I thought I might want to write a blog post based on my verse so I jotted this idea down on my blog topics sheet.

As we come to the end of Ovarian Cancer Awareness month I thought this would be the perfect time to talk about my verse.

I have always been interested in science. When I graduated high school the quote going with my yearbook photo was - To the Moon and Beyond. I thought I would become and astronaut.  I never did become one, I became a chemical engineer and teacher, but the science I learned helped me many times on my life's journey.

When I was diagnosed I didn't know a lot about ovarian cancer and I hadn't met anyone with ovarian cancer. I reached out to Cancer Hope Network and talked to a support volunteer who was a 5 year ovarian cancer survivor. Then my gynecologic oncologist recommended I reach out to the Kaleidoscope of Hope Ovarian Cancer Foundation and the LIVESTRONG Foundation. Both organizations gave me the tools to learn more, empowered me to share my story, allowed me to network with other women diagnosed with the disease and gave me hope.

In the time since my initial diagnosis I have spent a great deal of time learning about ovarian cancer from genetics to pathology to histology to immunotherapy to targeted therapies. I have been given amazing opportunities to interact with oncologists, genetic counselors, researchers and other women advocates. I have shared my story with small groups of women and with audiences filled with health care providers and cancer researchers. 

I am blessed to have been given the opportunity to survive ovarian cancer and my verse must include being the voice of those women whose lives were taken too soon by a disease where an effective screening test has still not been developed.

So what is the  stanza I have added to the world's story -

Hearing the word cancer,  
My knees are weak.
With family, faith and expert doctors 
I remain in this world.
Now I take what I love and 
share my "voice,  passion, and perspective
so all will know about this disease and 
those women whose life's journey include
ovarian cancer. 

What is your verse?


Dee
Every day is a Blessing!

Tuesday, May 9, 2017

Public Forum - 2017 Annual Retreat on Cancer Research in NJ

The Annual Retreat on Cancer Research in New Jersey is hosted by the Rutgers Cancer Institute of NJ and the New Jersey Commission on Cancer Research. The event includes poster sessions and mini-symposium on research by expert NJ researchers.

The day also includes a Public Forum. I have been lucky to have attended a few of the public sessions over the past few years. Last year's public forum topic was Survivorship. This year, the topic is Precision Medicine.

The topics of discussion will be:
The Promise and Practice of Precision Oncology
Capturing the Spectrum of Hereditary Cancers: A Moving Target in the Setting of Targeted Therapy
Ethical Issues in Precision Oncology.

This years event will take place on May 25, 2017  (8:30-10:00 am) at the Rutgers College Avenue Student Center.

Registration is free.
Please register on the following website: http://www.mpi-evv.com/2017NJCR/2017PFReg.asp

I've already registered for the event. How many of my fellow advocates and survivors will join me?

 See you on the 25th!

Dee
Every Day is a Blessing!

Sunday, March 12, 2017

#Trials4GynCancerNow - An SGO Campaign to Increas Gyn Cancer Clinical Trials

I wrote this blog post for the #gyncsm blog.  But I thought this topic is so important I needed to share it with my readers and others who may not be on Twitter. 

The SGO (Society of Gynecologic Oncology) is conducting their Annual Meeting March 12-15, 2017. You can follow research presented at the meeting by following the hashtag #SGOMtg on Twitter. Note that we'll discuss SGO Meeting highlights during our April 12th #gyncsm chat

During their annual meeting, SGO will be conducting a social media campaign to advocate for gynecologic cancer clinical trials. #gynscm is please to support this campaign and we hope you will join us.

There has been a steep decline in the number of clinical trials in gynecologic cancer since the restructuring of the NCI-sponsored cooperative groups in 2012.  Information about the campaign can be found in this SGO document.

You can join us as #gyncsm supports this campaign by tweeting the following starting on Monday, March 13th at 9:35am EST:
Women with #gyncancer deserve progress. Fund trials now @realDonaldTrump #Trials4GynCancerNow @SGO_org

Feel free to send additional tweets using #Trials4GynCancerNow to encourage increased funding of NCI trials. 

Thanks, 


Dee Every Day is a Blessing

Thursday, December 22, 2016

Last Research News of 2016 - Rubraca and FoundationFocus™ CDxBRCA

Another FDA approval for an ovarian cancer treatment happened this week.

"Rubraca is approved for women with advanced ovarian cancer who have been treated with two or more chemotherapies and whose tumors have a specific gene mutation (deleterious BRCA) as identified by an FDA-approved companion diagnostic test." - FDA (http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm533873.htm)

Rubraca (rucaparib) is a PARP (poly ADP-ribose polymerase)  inhibitor made by Clovis Oncology. The approval is based on two trials. One of the trials is the ARIEL2 trial. In that trial the duration of response was 11.6 months. 

Along with Rubraca, the FDA also approved the  FoundationFocus™ CDxBRCA companion diagnostic to identify those women diagnosed with ovarian cancer who have a BRCA mutation.  This is the first next-generation-sequencing (NGS)-based companion diagnostic approved by the FDA. The test by Foundation Medicine, Inc.  can test for both germline and somatic BRCA mutations in tumor tissue. Germline are inherited mutations and somatic are acquired mutations. 
 
Sources :



Dee
Every Day is a Blessing! 

Monday, October 17, 2016

Ovarian Cancer Research News - Fall 2016

I am pleased to share a number of recently released research studies. The list was compiled by Sarah DeFeo of OCRFA. Links to journal articles may be found on the OCRF page describing each study.

A Mayo Clinic research team has found evidence suggesting that premenopausal women who are not at high risk of ovarian cancer should not have their ovaries removed for the purpose of cancer prevention. 
Dee's Note: Removal of the ovaries should only be considered if you have a BRCA mutation. The side effects from ovary removal may lead to other health issues - cardiac, bone etc.

According to research published this month in the New England Journal of Medicine, the PARP inhibitor niraparib improves progression free survival in recurrent, platinum-sensitive women both with and without germline BRCA mutations.
 Dee's Note: This Parp inhibitor showed significant improved progression-free survival versus placebo for women with and without BRCA mutations or homologous recombination deficiency.

A new analysis published in the American Journal of Obstetrics and Gynecology determined the impact of gynecologic surgeon volumes on patient outcomes.
Dee's Note: Previous studies showed similar results. Low volume surgeon had higher mortality rates. Have your surgery done by a gynecologic oncologist who has completed many of these surgeries. 
 

New OCRFA-funded research demonstrates how a drug already in clinical trials could be used to boost anti-tumor immunity and cause T-cells to target the cancer directly while minimizing side effects.
Dee's Notes: PDL-1 and PD-1 work to prevent T-cells from fighting cancer cells. It was found that BET ( bromodomain and extraterminal domain)inhibitors can stop BRD4 (bromodomain-containing protein 4) which contributes to PDL-1 expression. 

The European Society of Medical Oncology published a study last week that indicated the reasons for a decrease in deaths from ovarian cancer in both young women and post-menopausal women. 
 Dee's Notes: I am confused about how the deaths from ovarian cancer can decrease if the number of women diagnosed has stayed constant. Women diagnosed with ovarian cancer are no longer on oral contraceptives. Anyone have insight into this issue please leave a comment below. 

While primary cytoreductive surgery followed by chemotherapy is the standard of care for newly diagnosed women with advanced ovarian cancer, newly issued practice guidelines suggest that some patients may benefit more from first-line neoadjuvant chemotherapy (NACT) and followed by surgery.
 Dee's Notes: Newly diagnosed women with stage IIIC or IV epithelial ovarian cancer who may only achieve suboptimal debulking ( less than 1 cm) should receive chemotherapy first.


A study published recently in JAMA Oncology showed that CA-125 tests and CT scans are routinely used in ovarian cancer surveillance testing, even though evidence has shown there is no clinical benefit to using these tests
 Dee's Notes: This prospective study showed no benefit to using CA-125 / CT scans as surveillance for OC. "During a 12-month period, there was a mean of 4.6 CA-125 tests and 1.7 CT scans performed per patient" 

The Biennial Ovarian Cancer Research Symposium is presented by the Rivkin Center for Ovarian Cancer and the American Association for Cancer Research. 
 Dee's Note: Good Summary of presentations on OC screening, treatment, microenvironments and disease mechanisms. 


Dee
Every Day is a Blessing!  

Thursday, June 30, 2016

NJ's Regional Moonshot Summit

Yesterday hundreds of researchers, oncologists, advocates,  insurance and pharmaceutical industry representatives met at Howard University in DC for the Cancer Moonshot Summit.

Here in NJ running concurrently with the DC meeting we held a regional Cancer Moonshot Summit.  As in DC advocates, insurance and pharmaceutical industry representatives, oncologists and others met at the Cancer Support Community Central New Jersey (CSCCNJ) to discuss the initiative. Cancer Support Community is a partner in the Moonshot Initiative lead by VP Joe Biden. The Regional Summit was co-sponsored by Rutgers Cancer Institute of NJ. This regional Summit was an excellent way for individuals to share their ideas and provide input to the  White House Cancer Moonshot Initiative.

The NJ Summit included watching VP Biden's speech from DC and a panel discussion. The panel included D. Toppmeyer, MD Rutgers Cancer Institute of NJ, U. Dugan, MD, PhD Bristol Myers Squibb, E. Levine LCSW, W. Wengel III Aetna, D. Gonzalez, US Dept of Health and Human Services and myself.

Panel participants .
Photo courtesy of @RutgersCancer
We discussed putting patients at the center - how to improve the experience of patients when initially diagnosed, after treatment as well as those treating cancer as a chronic illness as well as how to insure the information patients read online is accurate.  We also discussed the best way for oncologists in a community setting to be on top of the latest treatments and clinical trials. We ended with a short discussion of how to recruit patients to clinical trials and dispel the myths associated with clinical trials.

I was honored to be a part of this initiative. I am usually the one Tweeting from conferences but multitasking at this event was a bit of a challenge. So I share this Tweet with you. 

I have also submitted ideas to the Cancer Moonshot through the website. Do you have an idea? The site is live until July 1,2016 

As VP Biden said "This is Urgent" and I agree . This initiative gives me hope that we will develop a screening test.

Dee
Every Day is a Blessing!





Tuesday, May 17, 2016

Mixed Emotions

Sometimes I find myself so deep in my advocacy work and spending time with family ( my son and his wife visited for a few days)  that I don't have time to write blog posts. I apologize to my readers. 

This past weekend, I attended events for two ovarian cancer organizations. The Teal Tea Foundation (TT) held their 10th Anniversary Gala on Saturday.  And the Kaleidoscope of Hope (KOH) Foundation  held their Annual Awards Luncheon on Saturday. Both NJ based foundations raise funds for ovarian cancer research and awareness.

But in the post will not be writing about the wonderful work these foundations do each and every year.  Rather, I want to share how I felt as one of the survivors in the room.

When I arrive at each one, I am proud. Proud to be involved in organizations that are making a difference.  I am hopeful. Hopeful for the future as I listen to the researchers talk about their work.  Yet, I am sad. So sad that I at times I have to hold back tears. 

Why? You're healthy you say. You should feel good. Yes,  that is true but surviving without your friends by your side is difficult at times.

My friends, three in particular, whose lives were lost due to a gynecologic cancer, were missing from these events - Anne, Shari and Carole. But do you know who was there? Their husbands - Don, Dave and Bob.

I watched the faces of these supportive caregivers as their wives were honored and again as they watched survivors receive a special gift. I glance at my husband who had that look - knowing that he was thinking how it might have been him. 

Don't get me wrong it was wonderful to see Don, Dave and Bob. They knew me during those "no Hair Days". But I got well and their wives did not. So in a way the relationship changed.

It is hard to describe the nervousness and funny feeling I get in the pit of my stomach when I first see these men.  Sometimes I worry about what I will say. Do I remind them of a time filled with pain? I'm not sure what I am feeling - survivors guilt maybe?

I haven't seen Don since last year's TT event. We reminisced over the times he brought Anne to support group because she wasn't well enough to drive herself. He told me how he loved hearing all of us laugh at those meetings as he sat in a nearby lounge. That funny feeling started to go away.  Don smiled as I told him about the heron who regularly visits the pond behind my home. Anne loved herons and asked that we think of her when we see one. I think of her a lot. 

It took me until the last 15 minutes of the TT Gala to walk up to Dave. Shari passed away July, 2014. Like Don, the last time  I saw him was last year's TT event.  I walked up to him and said, " I was friends with... " he stopped me mid-sentence and said "Sure I know who you are. Dee, how are you doing?"  and I got big hug and the funny feeling went away. We talked about our families and he repeated more than once how strongly he feels that supporting research is the only way we can make a difference in the lives of women diagnosed with ovarian cancer. I totally agree. Together we are focused on finding a cure.

I've seen Bob a number of times since Carole passed away in February. We both now serve on the Board of KOH. One of the reasons I returned to the Board of KOH was because of Carole and her dream of finding a detection test and a cure. I am happy that I will be working with Bob because we are on the same page when it comes to the importance of research . Seeing him more frequently  keeps the funny tummy feeling from kicking into high gear. 


At events like these two I especially feel the loss of these women but I am glad that I have the chance to see their husbands and families, even if it means I feel such mixed emotions.

I know there are bereavement groups but does anyone know of a group / organization the reaches out to the countless partners, spouses and family members whose loved ones lives were taken by ovarian cancer?

Dee
Every Day is a Blessing! Blessed to know that Teal Tea and Kaleidoscope of Hope Foundations are focusing their efforts on research.

Thursday, October 1, 2015

It Is More Than Pink and Teal

It is about research.

In October, I see posts online from women diagnosed with ovarian cancer and other gynecologic cancers complaining and peeved about being surrounded by pink ribbons - on TV , in stores, on shirts, etc. Even women who have breast cancer write about how they see pink ribbons on items that appear to just be a way to sell products. They note that the  percentage of money earned from these products actually going to an organization is small.There are other complaints about a large breast cancer non-profit and how so much of the money raised doesn't go to research. Women with metastatic breast cancer are asking to be "seen and heard".  They want a greater amount of funds used for metastatic breast cancer research. I can understand why each person complaining or asking for recognition of ovarian cancer feels the way they do.  And believe me I have my share of teal shirts , earrings, etc and a few pink things too.  In October 2011, I even wrote a post about the "pinking" of the NFL.

My friend Christina and co-moderator of the #gyncsm chat said this on twitter.


 

So true. But what should that action be?

My life has been impacted by cancer in many ways in addition to my ovarian cancer diagnosis. My sister at the age of 42 was diagnosed with breast cancer and had a mastectomy and chemotherapy. She had a bone marrow transplant when her cancer metastasized. She passed away five years later. It has been twenty years since her passing.  And metastatic breast cancer continues to kill women - as does ovarian cancer in the ten years since my diagnosis.

Why is that? Cancer is a very complex disease. After attending medical conferences and listening to researchers I know that.  But how does spending money on items that are pink or teal for that matter make a difference?So the next time you make a donation to an organization or buy a product check out how much of the dollars raised actually goes to research.

Let's spend money on research. Because  the only way we will be able to understand cancer - breast, ovarian, kidney, lung, pancreatic   is through research.

What will you do to support cancer research?


Dee
Every Day is a Blessing!