Tuesday, June 30, 2020

iCARE -improving Communication about cancer Risk gEnes Project

Today I am sharing information about a new project at Rutgers Cancer Institute of NJ  to help understand how patients with BRCA mutations or Lynch Syndrome share their test results with family members.Check out the information below to find out how you can participate.




Many more patients are having genetic testing and it is important to provide information and tips on how to speak to family members about your results. 

Dee
Every Day is a Blessing ! 

Wednesday, June 10, 2020

"Your Caregiver Relationship Contract" - a Book Review

In January, I met with my fellow New Jerseyan, friend and caregiver consultant, Debra Hallisey. Debra founded AD-VO-CATE FOR MOM AND DAD, LLC and her website, https://advocateformomanddad.com/ has a wealth of information about various topics including finances, caregiving support and healthcare. As we ate, we discussed how our families were doing and the relationship that cancer caregivers have with their loved ones.

As we finished our meal Debra gave me a copy of her latest book, Your Caregiver Relationship Contract. I started to read the book and put it aside due to other commitments. Then the world became all things COVID -19. 

A few days ago I picked up the book again and finished reading it. What a helpful book! If you are a family member or friend taking care of an elder parent or relative this book can assist you in developing a contract and also in having those difficult conversations that come with being a caregiver. One point that Debra makes early on in the book when talking about making a contract is the need to "co-create" a contract that works for both you and your parent.

There are chapters that cover life changes, how this time can be an emotional journey, how to have those hard conversations, setting boundaries, asking for help and where to find support for yourself as a caregiver. At the end of each chapter there are exercises that help you put into practice what you learned in each chapter.

These following points stood out as I read the book.

Don't parent your parent.

The changes you may be asking your parent to make are emotional for you and for them.

Carees and caregivers alike must learn to ask for and say "yes" to help. 

You will also find a helpful list of resources at the end of the book.

If you are a caregiver for an elder parent or even if you are a caregiver of someone with a chronic illness Your Caregiver Relationship Contract is an excellent source of information. The book is available on Amazon https://www.amazon.com/Your-Caregiver-Relationship-Contract-expectations/dp/0578543834 .


Thanks Debra for providing me a copy and I look forward to another meal together in the not so distant future.
Dee
Every day is a blessing!



Monday, June 8, 2020

Symptoms/Survivorship and the Impact of COVID-19 on Cancer Patients at #ASCO20

This post will complete my series of posts sharing some of  what I learned during the #ASCO20 Virtual Annual Meeting. Survivorship and symptom management research have been two of the important topics that I have followed through the years at the ASCO annual meetings in addition to ovarian cancer research. Below, I have also included a few highlight Tweets from the session on the impact of COVID-19 on cancer patients and survivors.

Early Palliative Care

End of Life Conversations

Geriatric Assessments



Survivorship Session Summary

The Impact of COVID-19 on Cancer Patients 



 I look forward to seeing my advocate and researcher friends next year in Chicago.

Dee
Every Day is a Blessing! 

Sunday, June 7, 2020

Inspiration from #ASCO20

On this National Cancer Survivor's Day I am sharing two very inspiring speeches from the #ASCO20 Virtual Annual Meeting. One by Dr Skip Burris who was completing his year term as ASCO president and the other by Dr David Fajbenbaum, survivor, advocate and author of Chasing My Cure.

First some tweets from Dr Burris' speech.




Then Dr  Fajbenbaum spoke.








As Dr  Fajbenbaum completed his talk I imagined what it would have been like hearing him talk while sitting in the packed large hall in McCormick.  I am sure his speech would have been interupted countless times by clapping. And I am also sure my head would have been nodding in agreement along with so many other advocates and researchers in the audience.

As an almost 15 year survivor of Stage 3 Ovarian Cancer I do have Hope that working together we canfind improved treatments and insure all patients receive the health care they need.

Dee
Every Day is a Blessing!

Wednesday, June 3, 2020

Disparity Research - #ASCO20 Virtual Annual Meeting

For the past year, I have been a member of Community Action Board at the Rutgers Cancer Institute. The Board advises the Center of Health Equity and Engagement led by Dr. Anita Kinney. The Center's role is to improve patient engagement for underserved and underrepresented communities in NJ in order to improve screening, prevention and access to treatment and clinical trials.

With that role in mind I took some time during the ASCO annual meeting to review studies related to cancer disparities. Here are just a few of the studies I viewed.

Uterine Cancer
Abstract 6089
Impact of Obesity Ovarian Cancer
e18067


Opiod Access / End Of Life Care 
Abstract 7005


Gender based disparities in clinical trials
Abstract # 2058



Survival outcomes by race minimally invasive versus open surgery
 Abstract #6029


Financial Toxicity
Abstract 6079
Geography and Cancer Care
Poster  1574
This study assessed overall survival (OS) of patients with all cancers, chronic myeloid leukemia (CML), and lung cancer while assessing distance from each county to the one (NCI-CC) in Georgia. Researchers conclude that disparity in cancer care exists between geographic conditions.




Black and white disparities in triple negative breast cancer ... Nurses’ Health Study

Poster 1655
This study examined disparities in triple negative breaset cancer by socioeconomic position, reporductive factors and diabete.  " observed racial differences in TNBC diagnoses may be at least partially mediated by differences in socioeconomic position and reproductive patterns, namely breastfeeding."
 
Breast and cervical cancer screening disparities among transgender patients
Poster 7024
About 1 million Americans identify as transgender. Limited primary care access and poor adherence to breast and cervical cancer screening are evident for transgender populations.


I look forward to next year's annual meeting whose theme was announce by incoming ASCO President , Dr Lori Pierce. 
We as advocates have a role to play to insure all patients receive appropriate and timely cancer care.

Dee
Every Day is a Blessing! 

Monday, June 1, 2020

News from the Virtual #ASCO20 Annual Meeting - Gyn Cancer Highlights

It was my pleasure and an honor to be named one of ASCO's Featured Voices for this year's annual meeting. 

Over the course of the next few days I will be highlighting the research studies presented at the #ASCO20 Virtual Annual Meeting. I will share  posters, oral abstracts and presentations on gynecologic oncology, survivorship, cancer disparities and the impact of COVID 19 on cancer patients . I will also share parts of ASCO President Skip Buris's address and the keynote address by author, physician and cancer survivor Dr David Fajgenbaum. 

Since my Voice was active on Twitter I will share the tweets I wrote as well as ones I retweeted.

Today, I will begin with gynecologic cancer studies.

Surgery on Recurrence - Ovarian Cancer
Abstract 6000
Patients with surgery and incomplete resection had worse outcomes (median 28.8 months).   meetinglibrary.asco.org/record/185438/


Abstract 6001

PFS was 18.1 m vs 13.6 m in favor of the surgery arm #gyncsm #ASCO20 #OVCA Dr R Zang


 If you want to learn more head over to this YouTube video ( https://youtu.be/22UFGOGZ9lI )  featuring Dr Coleman's ASCO “Dissecting Out Improved Outcomes.” via  #SGOatASCO.

PARP Inhibitors - Ovarian Cancer
Abstract 6002

Olaparib w/ Cediranib - Ovarian Cancer
Abstract 6003

This was an all oral non-platinum treatment trial. Cediranib is a tyrosine kinase inhibitor for VEGFR1,2,3. Protocol was amended to allow maintenance therapy.

Folate receptor - Ovarian Cancer
Abstract 6004

Ovarian Cancer exhibits a folate receptor alpha (FRα). Adverse Events included diarrhea , blurred vision , nausea , and fatigue. Dr Gilbert presented.

Pembolizumab PD-1 - Ovarian Cancer
Abstract 6005 

If you can learn more about these studies by watching this video of Dr. Banerjee’s presentation, “Stay Sharp on PARP and More.” #SGOatASCO  https://youtu.be/ZTUyn8vPZ2Q

Olaparib LIGHT Study - Ovarian Cancer
Abstract 6013


Imaging with PARP inhibitor - Ovarian Cancer
Abstract 6014

BRCA1/ 2 Testing Ovarian Cancer
Niraparib and bevacizumab Ovarian Cancer
Abstract 6012

Immunotherapy Clear cell OC
Abstract #302065

Interesting I/O poster by Klein et al. Abstr #302065
Volunteers: All with rare gyn cancers (n=43)
Intervention: Ipi+Nivo
Comparator: NA
Outcome: ORR 28%
*Clear cell cancer (n=6): ORR 33% (1 CR seen)#gyncsm #ASCO20


Cervical Cancer
Abstract 6007



There are many more abstracts and posters related to gyn cancers available in the ASCO Meeting Library.

Dee
Every Day is a Blessing!

Sunday, May 24, 2020

Getting Ready for a Different Type of ASCO Annual Meeting - #ASCO20




This is the time I would normally be getting excited about traveling to Chicago for the ASCO Annual meeting. I would be thinking about what shoes would be best to walk the many miles required in McCormick Place. I would be checking the bus route from my hotel to McCormick Place, the locations of the Patient Advocate Lounge so I could be sure to plan rest periods and the schedule for after meeting events. I would have downloaded the mobile meeting app and chosen the sessions and set up a schedule. I would be looking forward to seeing the fellow members of the ASCO Clinical Practice Guideline Committee and the ASCO Social Media Work Group. And I would be getting excited to be seeing my friends, advocate and oncologists alike,  who I interact with on Twitter over the years.

But this year it is different. I won't be traveling to Chicago since the in-person meeting has been cancelled due to the Corona virus.  Instead, I am checking the ASCO website for the #ASCO20  virtual meeting schedule so I can take part in the meeting on my lap top. Depending on the weather I may sit out on my patio or at my desk or in a chair in my sun room. The Scientific Program schedule is out now so I have started to plan my days next weekend. ( https://meetings.asco.org/am/virtual-program). I will be tweeting from the meeting using my @womenofteal handle along with the  #gyncsm  and #ASCO20 hashtags. So far I have picked out these Scientific sessions to   "attend".

Saturday, May 30:
11:30 AM ET: Highlights Sessions: Hematological Malignancies; Gynecological Cancers
2:30 PM ET: Highlights Sessions: Cancer Prevention, Risk Reduction, and Genetics; Symptoms and Survivorship 
4:30 PM ET: Special Clinical Science Symposium: Cancer Care in the time of COVID:  Assessing Impact and Future Directions
Sunday, May 31 :
1:00 PM ET: Plenary Session
4:00 PM ET: Highlights Sessions: Developmental Therapeutics; Care Delivery and Regulatory Policy

I am looking forward to the live chat available during some of the sessions. This will make it  feel more like the live sessions where attendees can interact and ask questions of the researchers after data is presented.

Have you checked out the abstracts available online here? Be sure to check out Abstract #14113 Social media and gynecologic cancers: The impact of Twitter #GYNCSM.  The #gyncsm health care moderators Drs Sarah Temkin, Shannon Westin and Rick Boulay as well as my co-founder Christina Lizaso and I submitted the abstract based on the #gyncsm Twitter Community's 2019 survey. The ASCO website provides the ability to create collections of the abstracts so that you can read them at your convenience and have available when you are taking part in the virtual meeting.  I have shared some abstracts on Twitter and plan to write about others in a blog post.

Be sure to check out the DAILY NEWS page for podcasts and commentary (https://dailynews.ascopubs.org/). I would always pick up a paper copy to see commentary on the late breaking apps and upcoming sessions.

If you are not an ASCO member you can still join in the meeting. Registration information may be found at https://meetings.asco.org/am/registration

I will miss sharing the time with fellow advocates and researchers as in 2019 ...
Research Advocacy Network advocates 2019

ASCO 2019

ASCO 2019

ASCO 2019

ASCO 2019

ASCO 2019
but I hope to connect with some virtually in real time on Twitter or maybe through the virtual networking (https://meetings.asco.org/am/virtual-networking) provided by ASCO.

The theme for this year's Annual Meeting is Unite and Conquer: Accelerating Progress Together.  I hope to see many of us uniting next weekend and sharing progress made for the improvement of care for cancer patients worldwide.

See you online at the meeting!

Dee
Every Day is a Blessing!