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 ! 

"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!

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

Early Palliative care -Leukemia
Improved anxiety / depression with sustained benefits and improved EOL discussions
Stockler #ASCO20 #PalliativeCare pic.twitter.com/0luN6noPXH

— Dee Sparacio (@womenofteal) May 30, 2020

Early trial palliative care -
Stockler #ASCO20
EArly palliative care can help some phase 1 participants#ASCO20 #palliativecare pic.twitter.com/LBDyWlfigS

— Dee Sparacio (@womenofteal) May 30, 2020

End of Life Conversations

EMR and Serious illness
Stockler
EMR nudges increased conversations
Single study - may not be able to generalized to others #ASCO20 #Conversations pic.twitter.com/A4arNp133p

— Dee Sparacio (@womenofteal) May 30, 2020

Geriatric Assessments

Geriatric assessments- Stockler
Reduced G3-5 AE's
Supports @ASCO guidance for GA to be used #ASCO20
Feasible to do assessment
What are longer term effects? #ASCO20 #survivorship pic.twitter.com/0CeebgPDou

— Dee Sparacio (@womenofteal) May 30, 2020

Geriatric intervention Stockler
Reduced toxicity
Improved chemo toxicity recommended implementing as std of care. Requires a trained nurse practitioner. #survivorship #ASCO20 #geriatic pic.twitter.com/NEzRoMU9qW

— Dee Sparacio (@womenofteal) May 30, 2020

Geriatric Care to Reduce toxicity Stockler
Used QOL question
Early Treatment discontuation less
Less hospitalizations
Improved QOL #ASCO20 #geriatricancer pic.twitter.com/YAPCfKFZw4

— Dee Sparacio (@womenofteal) May 30, 2020

Survivorship Session Summary

Summary by Stockler -
Symptom and Survivorship
Good to see solutions are worth pursuing from early #PalliativeCare to the use of #geriatricassessment #ASCO20 pic.twitter.com/ukvIgjS26U

— Dee Sparacio (@womenofteal) May 30, 2020

The Impact of COVID-19 on Cancer Patients 

My first #ASCO20 watch party w/ #CCC19 friends.
Listening to Cancer & #COVID19 presentation by @NCIDirector. While trying to keep people safe from pandemic, we're creating issues w/ delayed/deferred care. What are long-term impacts at the population level but also at the N of 1? pic.twitter.com/5P54fN9AQP

— Stacey Tinianov (@coffeemommy) May 30, 2020

#ASCO20 @hemoncwarner presenting data from @COVID19nCCC - patients with #COVID19 and progressing cancer had more than a 5x higher mortality than patients with non-progressing cancer. pic.twitter.com/mnpC7AWc2s

— Merry-Jennifer Markham, MD, FACP, FASCO (@DrMarkham) May 30, 2020

Summary from @COVID19nCCC analysis of cancer patients with #COVID19 presented by @hemoncwarner. This data helps us better assess patients' risks & is important to have during shared decision making with our patients. #ASCO20 pic.twitter.com/XzgM7IJZXx

— Merry-Jennifer Markham, MD, FACP, FASCO (@DrMarkham) May 30, 2020

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

Dee
Every Day is a Blessing! 

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.

Technology is being used to develop new medicines faster - the energy at Breakthough will continue .@ASCOPres #ASCO20

— Dee Sparacio (@womenofteal) May 30, 2020

@ASCOPres speaks about the importance of diversity moving forward. #Truth@ASCOPres #ASCO20 @OncoAlert @SarahCannonDocs pic.twitter.com/rRaVISF6lm

— Erika Hamilton, MD (@ErikaHamilton9) May 30, 2020

and we the people with cancer are right there with you. #StrongerTogether #ASCO20 @oncoalert #bcsm #lcsm #bsm #gyncsm #crcsm #melsm https://t.co/xCV3tpQu7j

— Dr. Kelly Shanahan (@stage4kelly) May 30, 2020

Then Dr  Fajbenbaum spoke.

Listening to Dr Fajgenbaum speak about his journey as caregiver , patient and advocate. Looking forward to reading his memoir. “Life is Precious “#ASCO20 #gyncsm pic.twitter.com/LaWJ7ZfUCd

— Dee Sparacio (@womenofteal) May 30, 2020

Uniting the five stakeholders-- caregivers, patients, clinicians, advocates, and researchers: key strategy for making progress against disease from @DavidFajgenbaum #ASCO20 pic.twitter.com/b09hGBHCrE

— Jamie Holloway, PhD (@jamienholloway) May 30, 2020

#gyncsm https://t.co/72q2I5Ryv9

— Dee Sparacio (@womenofteal) May 30, 2020

#ASCO20 Dr. @DavidFajgenbaum describes having his disease relapse on the last known treatment & fail to respond to the only drug in dev. Says the world's best expert on a disease only knows as much as the world itself knows. He had reached the far limit of the world's knowledge. pic.twitter.com/JyD4j6HREK

— Tatiana Prowell, MD (@tmprowell) May 30, 2020

Connecting Patients and reserach#ASCO20 #ChasingMyCure @DavidFajgenbaum #gyncsm pic.twitter.com/SuMZNcYE6N

— Dee Sparacio (@womenofteal) May 30, 2020

Hope #ASCO20 @DavidFajgenbaum #gyncsm pic.twitter.com/wucpBNBRdS

— Dee Sparacio (@womenofteal) May 30, 2020

"You have to bring everyone together." Thank you @DavidFajgenbaum for sharing your story with all of us.

#ASCO20 #gyncsm pic.twitter.com/zK6v8cfcCx

— Dee Sparacio (@womenofteal) May 30, 2020

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!

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

#6089 Uterine cancer histology and stage at presentation in black & white women:
A cohort study of 488,000
Compared to white women black women are more likely to be dx with serous, clear cell,carcinosarcoma, leiomyosarcomas at adv stages #gyncsm #ASCO20 #OVCA #cancerdisparity

— Dee Sparacio (@womenofteal) May 29, 2020

Impact of Obesity Ovarian Cancer
e18067

"Obese patients were more likely to experience carboplatin under dosing in the neoadjuvant and adjuvant setting. No association with survival was observed for dose reduction and BMI #gyncsm #ASCO20 #OVCA #cancerdisparity 2/2

— Dee Sparacio (@womenofteal) May 29, 2020

Opiod Access / End Of Life Care 
Abstract 7005

Fleishman: Health Services Research and Quality Improvement Highlights #ASCO20
Racial / ethnic disparities in Opiod Access at EOL

Reducing implicit bias is still a challenge ; calls to pharmacy may help alleviate issue#cancerdisparity #Healthservices pic.twitter.com/Y5Kph11K5t

— Dee Sparacio (@womenofteal) May 31, 2020

Gender based disparities in clinical trials
Abstract # 2058

2/2
Of the trials lacking balance, the vast majority (80%) had under-representation of women.
Early phase > #disparity

future work: Why is there underrepresentation of women?
Is it time? child care issues? travel? Lots more to learn #ASCO20

— Dee Sparacio (@womenofteal) May 31, 2020

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

Are outcomes better if open radical hysterectomy used?
Data from Nat Cancer Database-
Black women with open radical hysterectomy have lower survival than white women who had MIS . #ASCO20 #gyncsm #disparity 2/2

— Dee Sparacio (@womenofteal) May 31, 2020

Financial Toxicity
Abstract 6079

"The cohort of women with high #financialToxicity demonstrated higher mean scores on screening measures for depression and anxiety as well as persistently lower quality of life." #gyncsm #ASCO20 #ovariancancer https://t.co/J0EGQlyjRI pic.twitter.com/Yk8lq2DO4f

— Fumiko Ladd Chino, MD (@fumikochino) May 29, 2020

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. 

I’ve been interested throughout my whole career in how to best create #equity in cancer care for all patients. So, I'm excited to introduce my @ASCO presidential theme, Equity: Every Patient. Every Day. Everywhere. pic.twitter.com/X8W3Qn8R9R

— Lori J. Pierce, MD, FASTRO, FASCO (@ASCOPres) June 1, 2020

We as advocates have a role to play to insure all patients receive appropriate and timely cancer care.

Dee
Every Day is a Blessing! 

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

Final analysis of AGO DESKTOP III/ENGOT-ov 20#6000 Secondary cytoreductive surgery(SRC) in recurrent ovarian cancer (ROC) Dr DuBois
“OS benefit >12 mos for pts with complete resection (CR) compared to pts without surgery (median 60.7 vs. 46.2 mos) #gyncsm #ASCO20 #OVCA 1/2

— Dee Sparacio (@womenofteal) May 29, 2020

Patients with surgery and incomplete resection had worse outcomes (median 28.8 months).   https://meetinglibrary.asco.org/record/185438/abstract

Secondary CRS in ROC is back to the game, good selection of your patients & high quality surgery will significantly improve survival #gyncsm... Choose them wisely & aim for complete CRS... pic.twitter.com/148HpeCGml

— خالد الوادي (@alwadikhaled) May 29, 2020

Abstract 6001

#6001 phase III trial of secondary cytoreductive surgery (CSR) in later recurrent ovarian cancer: SOC1/SGOG-OV2
Select Patients(predicted R0 surgery)extension of PFS to start of first subsequent therapy (TFST) 1/2 pic.twitter.com/6Y4hFmO9g5

— Dee Sparacio (@womenofteal) May 29, 2020

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

#6002 Final overall survival (OS) results from SOLO2/ENGOT-ov21
Maintenance olaparib provided an improvement of 12.9 months in median OS vs placebo. #gyncsm #ASCO20 #OVCA Dr A Poveda pic.twitter.com/OYyEkPXy6E

— Dee Sparacio (@womenofteal) May 29, 2020

Olaparib w/ Cediranib - Ovarian Cancer
Abstract 6003

#6003 phase III comparing olaparib or combo cediranib and olaparib to std plat chemo in recurrent plat-sensitive #ovca Dr Lui "C+O demonstrated similar activity to SOC in relapsed plat-sensitive ovca but did not meet the primary endpoint of improved PFS" 1/2 #gyncsm #ASCO20

— Dee Sparacio (@womenofteal) May 29, 2020

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

Ab 6004 Mirvetuximab soravtansine, a folate receptor alpha (FRα)-targeting antibody-drug conjugate (ADC), combo w/ bev in patients (pts) w/ platinum-agnostic ovarian cancer.
overall response rate (ORR) of 43%, high FRα expressing tumors ORR was 61% #gyncsm #ASCO20 #OVCA

— Dee Sparacio (@womenofteal) May 29, 2020

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 

6005 KEYNOTE-100 trial of pembrolizumab in patients with advanced recurrent ovarian cancer. Pembro monotherapy Increased ORR & trend to higher OS with >PD-1 expression Median OS was 18.7 months overall, Dr Matolunis https://t.co/2eRjkNFc5K#gyncsm #ASCO20 #OVCA

— Dee Sparacio (@womenofteal) May 29, 2020

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

Poster 6013:Olaparib in pts with platinum-sensitive relapsed (PSR) #ovca by BRCA mutation (BRCAm) & homologous recombination deficiency (HRD) status: LIGHT study.
Similar Olaparib efficacy was seen in the gBRCAm and sBRCAm cohorts #gyncsm #ASCO20 1/2

— Dee Sparacio (@womenofteal) May 29, 2020

In non-BRCAm patients - HRD + patients had longer median PFS and higher ORR than HRD- patients #gyncsm #ASCO20 #OVCA #goASCO20
2/2

— Dee Sparacio (@womenofteal) May 29, 2020

Imaging with PARP inhibitor - Ovarian Cancer
Abstract 6014

#gyncsm #ASCO20 Abstr 6014 (Tjokrowidjaj, et al) has an important message as well:

For women with mBRCA on maintenance PARP for platinum-sensitive recurrent ovarian cancer:

CA125 PD correlates with PD by imaging (RECIST) BUT
PD imaging seen in 40% with a CA125 in nl range: pic.twitter.com/64nN6CdYcu

— Don S. Dizon MD 🇬🇺 (@drdonsdizon) May 29, 2020

BRCA1/ 2 Testing Ovarian Cancer

Despite guidelines dating back to 2008 that all ovarian cancer patients should have BRCA1/2 testing (either germline or somatic), #cancerlinq RWE shows that only 22.6% of ovarian patients actually received testing. Huge opportunity for incr. education. #ASCO20 #gyncsm pic.twitter.com/dn0U8B0BQz

— Jamie Holloway, PhD (@jamienholloway) May 29, 2020

Niraparib and bevacizumab Ovarian Cancer
Abstract 6012

# 6012 Poster Final survival analysis of NSGO-AVANOVA2/ENGOT-OV24: Combination of niraparib and bevacizumab versus niraparib alone as treatment of recurrent platinum-sensitive #ovca —A randomized controlled chemotherapy-free study.#gyncsm #ASCO20 #OVCA

— Dee Sparacio (@womenofteal) May 29, 2020

PFS demonstrates that the niraparib-bevacizumab combination had clinically and statistically meaningful results. Trial not powered for other endpoints Dr Mirza #gyncsm #ASCO20 #OVCA pic.twitter.com/xRCwkH9PLz

— Dee Sparacio (@womenofteal) May 29, 2020

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

— Don S. Dizon MD 🇬🇺 (@drdonsdizon) May 29, 2020

Cervical Cancer
Abstract 6007

STARS study of adjuvant RT v sequential (SCRT) v concurrent (CCRT) chemoRT in IB1-IIA2 cervical ca #ASCO2020 #gyncsm #OncoAlert
1° endpoint: DFS
👉⬆️LN+ SCRT/CCRT,⬆️compliance RT alone
👉SCRT⬆️DFS, DRFS, even vCCRT! Most in HR subgroup
👉SCRT⬆️OS vRT alone
👉❌diff long-term QoL pic.twitter.com/yKC5joE1Sh

— Nat Lester-Coll, MD (@DrLesterColl) May 29, 2020

For recurrence, the main advantage for sequential chemoRT was in reducing the risk of distant recurrence. 4-year local recurrence rates <10% for intermediate risk, 10-15% for high risk in all arms.

Gr3 toxicity in sequential CRT arm< concurrent CRT #ASCO20 #gyncsm
G5/

— Matthew Katz, MD (@subatomicdoc) May 30, 2020

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

Dee
Every Day is a Blessing!