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!

 

 

 

 

 

 

 

 

Countdown to #ASCO22 - Plans and Tips

One week from today the ASCO Annual Meeting begins. I am once again honored to be an #ASCO22 Featured Voice along with so many amazing cancer health care providers/ researchers and advocates. If you will be following the meeting on Twitter, check out my Featured Voices list on Twitter at https://twitter.com/i/lists/1529598901950488577 .

Joining me this year as advocate voices are Lee Jones (@LeeJonesMBA), Ivy Belkins (@ivybelkins,)  Patty Spears (@paspears88),  Sanford Jeames (@JeamesSailor), and Shelley Nasso (@sfuldnasso). 

I have started to prep for the meeting by using the paper program ASCO provided. Earlier this week I used the schedule on their website (https://conferences.asco.org/am/program) to plan my personalized meeting schedule. 

From the program guide you can search by day, topic or session type. After signing in you may add sessions you want to attend to your agenda. This way you can go back and check out what you have scheduled and where you need to be. 

So far my schedule includes

June 3 

Social Justice and Equity: Why Older Adults With Cancer Belong

June 4

Uterine Sarcomas: How to Navigate an Ever-Growing List of Subtypes

Poster session: Symptoms and Survivorship 

Poster session : Gynecologic Cancers 

Poster Discussion session: Gynecologic Cancers 

June  5

Education Session  Addressing Challenges in Ovarian Cancer Managemen

Education Session Strategies to Advance equity in Clinical Trials 

Plenary Session

June 6 

Oral Abstract Session - Gynecologic Cancers 

Education session - Overcoming Disparities in Ovarian Cancer Genetic Testing 

Education session - Novel Therapies in Gyn Cancer  

June 7

Clinical Science Symposium Molecular -based Treatment for Endometrial Cancer

 

 

In addition to these sessions I am looking forward to a dialog session with the FDA's Oncology group,  attending the Evidence Based Medicine Committee luncheon (as I complete my three-year term on the Committee), attending the ASCO President's reception, viewing the displays in the Exhibit Hall ( https://events.jspargo.com/asco22/Public/Exhibitors.aspx?ID=90502&sortMenu=102000 ), meeting with researchers I am working with on a number of projects and getting together with COSMO members as well as other advocates. 

 

Did you know that ASCO has a special room just for patient advocates? The Advocate Lounge ( Room S402) gives advocates a place to network, grab a bite to eat, pick up educational material and  because even wearing your most comfortable shoes McCormick Place is HUGE, you need a place to relax.  

 

Are you attending #ASCO22 in person? I hope our paths cross so we can say Hello!

 

Dee

Every Day is a Blessing!

 

 

 

Here at navigation steps by ASCO https://conferences.asco.org/am/how-navigate-virtual-meeting

Speaking Out About NIH Budget Cuts

I was invited by Rutgers Cancer Institute of New Jersey to speak at the press conference Senator Bob Menendez  was holding after he toured the Cancer Center.  The press conference highlighted the impact cutting the National Institutes of Health budget by 18% would have on researchers, oncologists and patients.

Here are the main points I made during the speech.

I am here today because of cancer research funded by the National Institutes of Health. The successful treatment of my cancer at the Rutgers Cancer Institute of New Jersey has been key to my survival. I was first diagnosed with stage three ovarian cancer in 2005, one of over 700 women diagnosed that year in NJ. After my surgery, I took part in a clinical research trial and after nine chemotherapy cycles, I was told I was disease free. When the tumor returned in 2008 I had surgery, 6 more rounds of chemotherapy and was once again disease free. The treatments I underwent were available to me because of research supported by the NIH.

In the almost 12 years since my diagnosis I have seen major developments in treating cancers like mine – all due to research funded by the federal government.

In 2006, a study was released that said intra peritoneal chemotherapy offered a survival benefit for women with ovarian cancer. We know this because of NIH funded research.

  

In 2011, the Cancer Genome Atlas, a project funded by the NIH, identified new mutations linked to ovarian cancer. This knowledge has led to new treatment strategies. We know this because of NIH funded research.

We saw the FDA approve a number of new therapies that specifically target ovarian cancer, reducing toxicity and maximizing anti-cancer efficacy.

We have these treatments because of NIH funded research.

Today work continues to develop immunotherapies to treat ovarian cancer.

We have these new developments because of NIH funded research. 

Progress is being made and now is not the time to reduce NIH funding.

A proposed 18% reduction in funding would stagnate key research and reduce the number of investigators trying to understand the causes of the disease and developing cures for many types of cancer. This in turn will impact the lives of many residents in NJ who have been or will be diagnosed with the disease in the future. 

As a Board member of the local Kaleidoscope of Hope Ovarian Cancer Foundation I have seen the impact grants can make in the career development of young cancer investigators. Many researchers supported by KOH have gone on to receive grant awards from the NIH. The Federal government’s support of cancer researchers, especially young investigators who wish to study rare cancers, is very important to me and other women who may develop gynecologic cancers in the future.

Cancer is not partisan, it does not care what religion you are, what the color of your skin is, what your age or sexual preference is. The only way we as a country will learn how to reduce our risk for disease, find better treatments, find a cure and  support survivors is through cancer research funded by the National Institutes of Health.  Thank you.

 Press Release: https://www.menendez.senate.gov/news-and-events/press/menendez-visits-rutgers-cancer-institute-of-nj-to-illustrate-the-impact-of-trump-proposed-budget-cuts-on-lifesaving-biomedical-research-that-leads-to-new-cures-treatments

 Dee

Every Day is a Blessing! 

Chicago Here I Come - ASCO 2016

I'm excited to once again be heading to the American Society of Clinical Oncology Annual Meeting at McCormick Place,  Chicago from June 3rd to the 7th. This year's theme is Collective Wisdom - The Future of Patient-Centered Care and Research.  Thank you Conquer Cancer Foundation for supporting my attendance. I learned this morning that VP Joe Biden will be speaking to the attendees on Monday afternoon and I look forward to hearing him.

I've been using the ASCO Annual Meeting iPlanner the past few day to pick out the sessions I want to attend. There are education sessions, clinical science symposiums, oral abstract sessions, poster sessions and poster discussion sessions. With so many topics to choose from I had to narrow my search field to sessions on gynecologic cancers, survivorship and cancer prevention. With over 30,000 people expected to attend and the top researchers in the world presenting, it almost guarantees that there will be overlapping sessions where I will have to pick one.  Here is just a small sample of some of the education sessions I'll attend:

• Intraperitoneal Chemotherapy for Ovarian Cancer: Trials and Tribulations
• Divide and Conquer: Epithelial Gynecologic Cancers Beyond BRCA
• Symptom Management for the Patient With Gynecologic Cancer
• Patient and Survivor Care
• Immunotherapy: Now We're Getting Personal—Using Genomics and Biomarkers to Predict Response
• Leveraging the Immuno-Molecular Landscape of Gynecologic Cancers
• Neoadjuvant Chemotherapy: Location, Location, Location
• Cancer Prevention, Hereditary Genetics, and Epidemiology      

But there is more to the ASCO meeting than just attending presentations and looking at posters. My favorite part is making connections. I can connect with other advocates at the Research Advocacy Network dinner, meeting "twiends"at the #ASCO16 TweetUp and meet researchers in the Oncology Professional's Hall and at the ASCO President's Dinner.

Advocates are provided a special advocates lounge area- a great place to catch up with others, hear exciting news about ASCO and FDA programs, have a snack and relax. It is such a welcome area between sessions.

I'll be tweeting live from the meeting using the #ASCO16 and #gyncsm has tags. So follow me on twitter at @womenofteal and I'll share the latest research news with you. 

Dee
Every Day is a Blessing!

ASCO's The State of Cancer Care in America (2016) and Clinical Cancer Advances

I have been busy spending time with family the past few weeks. The blog posts should be more regular going forward. Thanks for understanding. 

ASCO ( American Society of Clinical Oncology) produces a number of important reports each year of interest to survivors, advocates and caregivers.

The State of Cancer Care in America 2016  reports on the trends in oncology care in the US. The report found that there is a  shortage of oncologists in rural areas, there remains inconsistent insurance coverage for cancer patients and the cost of cancer care continues to rise.
Below is an infographic which summarizes the information and recommendations made in the report. You may read the full report here.

The second report of importance to survivors is Clinical Cancer Advances 2016. For the past 10 years, ASCO has been producing this annual report. Earlier this year ASCO asked advocates and survivors to share how advances in research impacted their lives. You may read the report here.  I was honored to have my story chosen to appear in this year's report . You may find it on Page 41 ( 43 in a pdf reader).

Dee
Every Day is a Blessing!

Chicago, Here I Come!

Tomorrow I will be heading to Chicago for the American Society of Clinical Oncology (ASCO) Annual Meeting "Illumination and Innovation". I will be attending as a patient advocate and representing the #gyncsm( gynecologic cancer social media) Community on Twitter which I co-founded and co-moderate with Christina Lizaso.

I will be tweeting using the #gyncsm hashtag to keep the community up to date on the latest research news for those impacted by gynecologic cancers. Due to my diagnosis I admit in advance they there may be a heavy emphasis on ovarian cancer.

In order to spend my time efficiently,  I spent time the past few days finalizing my schedule. The meeting starts on Friday afternoon and ends on Tuesday afternoon. The  iPlanner on the meeting website made this planning a bit easier. I focused on the Gynecologic Cancer sessions (education and poster sessions) as well as the Patient & Survivor  and Health Services and Quality of Care sessions. There is an app for the meeting for my phone so I can log in at any time and see my schedule, maps of McCormick ( which is huge), places to eat, shuttle locations etc. You might wonder why planning ahead is so important. Well this conference is the largest  oncology conference in the world with well over 30,000 attendees. So with a packed scheduled and long walks between locations and let's not forget the Oncology Professional Hall it sure helps to have it mapped out in advance. There were so many presentations and posters to choose from: BRCA mutations and the genome atlas to managing treatment in older women to  medical diagnostics and immunotherapy just to name a few.

 The other added benefit of planning ahead is that it insures I won't miss the sessions/ posters presented by doctors I have met in the past or followed for years on Twitter. For example, I can't wait to see Dr Matthew Katz's poster on Disease-specific hashtags for online communication about cancer care. Dr Katz has been a supporter of #gyncsm community from its inception in 2013 and helped us with the Tweet Disclaimer on our blog. Another poster I don't want to miss is the one by Roisin O'Cearbhaill on Carboplatin hypersensitivity reactions in carboplatin treatment for recurrent ovarian cancer . I met Roisin a few years ago at a Kaleidoscope of Hope Foundation dinner where she received a grant for her research and having experienced a carboplatin reaction this is of particular interest to me.

I also have set aside time to meet up with other advocates in the Patient Advocate Lounge and look forward to the Tweet-up taking place on Saturday night. Evenings will be busy to with the dinners and receptions and catching up with friends from the Research Advocacy Network.

Be sure to check back frequently for updates from the meeting and if you are on Twitter be sure to follow #gyncsm and #ASCO15 for the latest news.

Lastly, I want to thank the Conquer Cancer Foundation whose support will make this trip and my meeting attendance possible.


Dee
Every Day is a Blessing!

Grant Applicants Wanted

The Kaleidoscope of Hope Foundation is an ovarian cancer foundation based in NJ. The Foundation has awarded more than $ 2.5 Million to ovarian cancer research since its founding in 2000. I wrote about their recent research grantee, Dr George Preti recently on this blog.

If you are a cancer researcher, information on how to apply for one of KOH's 2014 grants is available here. Grant applications are due by January 13, 2014. KOH has a Scientific Advisory Committee which provides an expert preliminary review of the research grant applications and then shares their invaluable recommendations to the KOH Board who makes the grant award decisions.

Foundations like KOH and their support of cancer research make a difference in the futures of women diagnosed with gynecologic cancers. 

Dee
Every Day is a Blessing! 

Teal Walk to Teal Talk - A Perfectly Teal Weekend

A Walk - Saturday
A few weeks ago I formed Team 1 Reason and registered my husband and I to walk in the Kaleidoscope of Hope Foundation's Avon-by-the-Sea walk. KOH raises funds for ovarian cancer research. On Saturday on a beautiful autumn morning we drove east to the shore. I was thrilled that my cousins Fred, Janine, Marion and Allison joined my team and many more family and friends contributed to the walk. Although the last donations to the team are not yet posted online it looks like we raised ~$ 2900 for Ovarian Cancer research. The entire walk raised ~ $101,000 for research.

We all enjoyed a day at the shore and are already planning to attend next year.

Walkers gathering on the Avon NJ Beach before the KOH walk.

Team 1 Reason

A Talk - Sunday

I wrote about teen Kristin Gmunder's role in an Ovarian Cancer Awareness Day in my last post.

She put together a wonderful program which included these presentations:

"ovarian Cancer 101" by Wilberto Nieves-Neira one of the wonderful gyn-oncs at CINJ.

"Genetics of Ovarian Cancer"Michele Horner MS, CGC St Peter's University Hospital 

"Preventing Cancer through Nutrition" Teresa Grasso , RD,CDE St Peters University Hospital

"Advocating for Government Support" Janice Swierczek , VP- Teal Tea Foundation

I told my story as did Kristin's Aunt, Karen Herzog a survivor who is part of OCNA's Survivors Teaching Students program.

I can say I walked away learning something new from each of the courses. Did you know that you should not have more than 66 grams of fat at day if your daily intake is 2000 calories? Did you know that ovarian cancer is heterogeous? ( There is not a dominant mutation but rather many mutations.)  Did you know that you can reduce your risk of ovarian cancer by having your first child before the age of 25? Did you know you should eat multicolor fruit and vegetables to get good anti-oxidants? This was a very nice and informative day. 

Great Job Kristin!

Dee

Every Day is a Blessing!

ASCO in Manageable Pieces

As you know this past weekend I was in Chicago for the American Society of Clinical Oncologists Annual (ASCO) meeting. I was participating thanks to the support of the Conquer Cancer Foundation. ASCO is the largest oncology meeting in the world with 30,000 participants.

While at the airport yesterday , waiting for my delayed flight home,  I looked back at my itinerary for ASCO and found that I attended:

7 Education sessions
1 Clinical Science Symposium
2 Oral Abstract sessions
2 Poster Discussion sessions

 I viewed well over 100 posters on gynecologic cancer, genitourinary cancer , developmental therapeutics and tumor biology and spoke to researchers who came from the US, Germany , France, Japan and Spain. And I also met some of the most motivated research advocates in the world.

I was hoping to blog every day but since my day started at 8am and ended at 6:30 with most days including dinners that ran till 9pm I found I did not reach my goal to post a detailed entry every day. Hopefully the posts I did write gave you flavor of what the meeting sessions covered.

But I've decided that I want to convey more about the research I heard and read about. So over the next few days I will be posting more detailed entries about:

Drug Shortages
Ovarian Cancer Phase I trials
Ovarian Cancer Phase III trials
International Ovarian Cancer Research
Parp Inhibitors
Cancer Patient Survivorship
Random Things I Found Interesting

I hope you will check back to read about the topics I found most interesting. Be sure to a questions if you would like me to explain anything further.

Dee
Every Day is a Blessing!

Public Forum NJ Cancer Retreat May 24th

UPDATED: Realized the links and photos were not working correctly.Please go directly to the site for more information.

The Annual Retreat on Cancer Research in NJ is where cancer researchers in NJ share their research results and discuss. Last year I attended the Public Forum which was on Survivorship and also spent time reading  posters.This year's public forum is on obesity and from the schedule is will be an informative session.  I'll be attending again this year and hope you will too! Check out the website
http://www.njcancerretreat.org/
for more information.

Dee
Every Day is a Blessing!

Survivor to Survivor: Understanding Cancer Research

I cordially invite you to attend my upcoming talk at the Cancer Support Community of Central New Jersey (3 Crossroads Drive, Bedminster, NJ).

Survivor to Survivor: Understanding Cancer Research

Thursday, March 15 • 6:30–7:30 pm Guest Speaker: Dee Sparacio, CSC Participant, Ovarian Cancer Survivor and Research Advocate Cure for Cancer Found–News at 11! What do the cancer research sound bites on the evening news mean for you? Learn how to read and interpret cancer research results from posters to journal articles. Find out which Web sites are reputable sources of cancer research information.

Please call 908-658-5400 to register.

Dee

Every Day is a Blessing!

Glycobiology Research

A friend and fellow ovarian cancer survivor sent me a link to the article "Attacking "bad carbs" to fight ovarian cancer" which appeared in Beaker , the Sandford-Burnham Medical Research Institute's blog. . The article reports on glycobiology research by Michiko Fukuda, Ph.D. and her team.

Glycobiology is the study of glycoproteins. Glycoproteins are molecules made up of carbohydrates and proteins. The surface of epithelial cells are protected by carbohydrates. When a cell becomes cancerous the surface carbohydrates are altered and may contribute to cell growth and metastasis. Dr Fukuda and her postdocs worked with a monoclonal antibody (HMOCC-1) that attaches itself to the surface of malignant Ovarian Cancer cells. They developed a biochemical method to determine which modified carbohydrate the antibody attached itself to. The complete research article was published in the Journal of Biological Chemistry . Click here for a link to the article.

The more we understand the structure of ovarian cancer cells the better we can develop treatments.

Dee

Every Day is a Blessing!

ASCO Blueprint for Research

"We can no longer think of cancer as one disease"

Michael P Link, President of ASCO

That is the reason why ASCO ( American Society of Clinical Oncologists) has published a blueprint to transform clinical and translational cancer research.

The ASCO Vision includes :

"Defining Cancer Based on Characteristics, Not Solely by Location in the Body, Molecularly-Driven Diagnostic and Therapeutic Development, More Robust Biomarkers, New methods of Cancer Prevention, Diagnosis and Treatment"

I also agree with the recommendation that there be more collaboration on the development of therapeutic agents, a focus on smarter, smaller more focused ( molecularly) clinical trials and the use of electronic medical records.

It is an interesting read and I highly recommend it.

Don't take my word for it, download Accelerating Progress Against Cancer at

http://www.asco.org/ASCOv2/Department%20Content/

Cancer%20Policy%20and%20Clinical%20Affairs/Downloads/Blueprint.pdf

I'm curious to see what you think.

Dee

Every Day is a Blessing.