Lucky 13

chadheathcott.com

For me, 13 is a lucky number. I lived for over thirty years in a home with an address number of 13. And today, I celebrate writing this blog, all 1147 posts, over the past 13 years. 

As I approached this blogging anniversary I admit I have been thinking that it may be time to stop blogging. There have been many times over the past year when I had writer's block. I just couldn't come up with an idea that I thought would interest my readers or provide any insight into living and surviving ovarian cancer. 

Being so many years out of treatment, I was starting to feel that my experience was no longer relevant to women who now have options to use Bevacizumab or Parp Inhibitors as maintenance therapies. I could read about the different types of therapies but I never took any maintenance therapy. This year women are struggled not only with a cancer diagnosis but having treatment during Covid -19.  I did go for my annual cancer center visit in September but my appointment was never delayed or impacted in any way by COVID 19. 

Then a few things happened. 

I have had the opportunity to speak to two women on a monthly basis since July as a Cancer Hope Network volunteer. (I've been a CHN volunteer for over 10 years now.) While I can't share their stories, I will share that when I called them last week to wish them a Merry Christmas,  one had good news because of good scan results while the other had not such good news.  Yet both were glad I called so they could share their news. Both thanked me for listening and being available to answer their questions.

Then a women diagnosed with ovarian cancer reached out to me via direct message on Twitter. I answered a few of her questions and said I have written a blog for a number of years if she would like to read it and shared the link with her.  A few days later I got another DM from her and she commented on how reading a few posts were so helpful.

Lastly,  a fellow cancer advocate commented on my previous post "Stay the Course". She said "So often we think we have to do something huge or make sweeping changes. Sometimes, "staying the course" is enough. " 

So I will do just that.  I will stay the course and continue to write this blog in the hopes that I reach just one woman.

May all my readers have a Happy and Healthy and Safe 2021 !

Dee

Every Day is a Blessing.

Reflections

2020 was a different type of year that is for sure. The last trip I took was to Houston in January to give a talk at the NRG Semi-Annual Meeting. So many other meetings that should have been in person, Chicago, Washington DC, Rhode Island and others became virtual due to Covid-19. Family vacations were cancelled and our home was the safe place to be.

As I decorated the Christmas tree with ornaments from past travels, the memories provided me a way of revisiting each and every location.  Enjoy this short trip to just a few of the places I've been lucky enough to visit as my Holiday Gift to you. 

Zion National Park

San Francisco

Muir Woods

Mount Vernon

Mt Rushmore

Kansas

Yellowstone National Park

DisneyWorld

North Carolina

New Zealand

Alaska

Badlands National Park

Australia

Portugal

May this holiday season bring you good memories, joy and hope for the future. 

 Dee

Every Day is a Blessing! 

Stay the Course

 A few years ago, shortly after moving into my community I took part in an art class with Dar James, artist and book illustrator.  She taught us a painting technique and set us free to be creative. When we finished the painting, she asked us to come up with a thought or mantra we could write on the painting. I was about 3 years out from my ovarian cancer recurrence. At the time, I was anxious about another recurrence. I was nervous about every time my abdomen felt uncomfortable or I felt full or I had a headache. A wise person told me that if I am doing everything I can - exercising, eating well  and going to my follow-up doctor's appointments I am doing my best. So to remind myself to keep doing what I need to stay healthy, I chose the phrase, "Stay the Course". 

I was looking at the painting the other day and I realized that "Stay the Course"  is still appropriate for many reasons. I've continued to try my best to stay healthy. I walk, do yoga and Jazzercise and try to eat healthy.  I saw my dermatologist in June.  My appointment with my advance practice nurse at my cancer center was in September, when I also had my CA-125 check. I saw my eye doctor in October along with having my annual mammogram. And I recently had my annual wellness check-up with my PCP.

But this year I needed to do more. I need to stay the course until I receive a vaccine for Covid-19. And yes, I have read the study results from the Pfizer vaccine trial and have read about how the vaccine is made and the various components. I was actually happy to see lipid nanoparticles being use since I had spoken to a researcher at ASCO in  2019 about using those particles to deliver cancer treatments .  Even having had an anaphylactic reaction to carboplatin, I am comfortable taking the vaccine. I know that in this day an age where we get packages overnight and can find information at our fingertips waiting is not easy. But I will have to stay the course a bit longer.

So in the mean time, I will continue to wear a mask. I actually have masks in assorted colors and styles to choose from. I will continue to carry hand sanitizer with me and I will continue to wash my hands more frequently while avoiding touching my eyes and face. I will continue to avoid large crowds - even if the group is outside. If I am in a store I will continue to change directions to avoid people who may be closer than six feet.  I will continue to avoid eating inside at restaurants.

 I'll share my experience with you when I actually am able to get the vaccine. But in the mean time, I hope you will stay the course with me.

 

Dee

Every Day is a Blessing!

 

Thankful

In years past we have traveled to spend time with family and friends on Thanksgiving. We've celebrated  in Georgia, Alabama, Virginia and Kentucky. And last year, we hosted dinner in our home.Oh how I enjoy the smell of turkey roasting in the oven.

This year we had planned to gather in DisneyWorld and celebrate the holiday with our daughter and son and their families.  But with the risk of Covid 19 high and quarantine restrictions in place, staying home is the best choice for us. This year will be different for sure. Just Nick and I and the dogs intensely watching us eat turkey and stuffing and sweet potatoes.  When I was in cancer treatment and unable to make a lot of the family gatherings, I was sad but I made it through. I expect we will all make it work from a distance this year too. And I know when we do get together and give each other hugs, it will be wonderful! 

Covid has changed a lot in 2020 - no hugs, no house visitors, no trips to far away places.  But the one thing Covid-19 can not change is how much I am thankful for this year.

My husband - My rock, best friend and a wonderful caregiver.

My daughter, son-in-law and grandsons -  You make me smile even though you live half way around the world.  It was a blessing for you to stay with us for 5 months earlier this year (Thanks to Covid19.).

My son and daughter-in-law - You are amazing. Without hesitation you opened your hearts and home to another dog, Ziti, who found you as she wandered through your neighborhood. She may miss her puppies but she has a whole new wonderful family. 

Family members and friends too numerous to mention by name. Your love and support  - phone calls and texts - are a blessing to me.

My fellow cancer survivors and advocates - You inspire me and together we can make a difference in the lives of cancer patients and survivors.

My dog, Amber - She is always ready to share her unconditional love and loves to jump and weave. Walter, the pug -You can make me smile just by the tilt of your head. 

Skype, Zoom, Facebook Messenger -  Platforms that allow us in numerous states and around the world to spend some time together this holiday.

And as with every year for the past fifteen, I am especially thankful for...

the doctors, nurses and social workers at Rutgers Cancer Institute of NJ. I would not be writing this if not for the excellent care you provided and continue to provide me. 

 

 

I will end this post as I usually do - Every Day is a Blessing!

Dee

 

 

 

Catching Up On All Things Advocacy

Well, were did the time go? It is over a month since my last blog post. I'm OK and plugging along.

It appears that being home most of the time - trying to reduce my risk of COVID -19 has not meant  less advocacy work. In fact,  I think that I am busier than normal. I had to turn down two projects for November and December so I don't fall behind in projects I have already committed to. 

I had a pretty good September which is Ovarian Cancer Awareness Month. I formed a team to walk for the Kaleidoscope Of Hope Ovarian Cancer Foundation and raise funds for ovarian cancer research, virtually of course. My daughter and niece, joined me as members of team Quarantine Fifteen. I chose that name because I celebrated 15 years as an ovarian cancer survivor this year and 2020 is the year of the COVID-19 quarantine. We raised over $500. I walked my 5K with two other survivors at a park in Allentown, NJ. How I wish we could have been on the boardwalk in Bradley Beach looking out at the ocean.Hoping next year will have us back at the Jersey Shore.

For the first time ever, I was able to attend the OCRA Ovarian Cancer Conference (Sept 29-Oct 2). It was virtual this year due to COVID-19 but I still had a great time and learned new information.  I was so excited to spend some time with my survivor friends. A group of us - many who had been ACOR listserve users - all met one morning of the conference in the virtual lobby to catch up and present the Big Girl Panty award.  

Here are three examples of the excellent presentations from the Conference.

Learning about rare ovarian cancer from Dr  Gershenson

Learning about PARP inhibitors from Dr . Matulonis

Racial Disparities in Ovarian Cancer with Dr Khabele

On October 16th I took part in the online celebration of the Cure Ovarian Cancer Heroes Award. I was so excited to celebrate with two advocates I have know for a number of years and a researcher I had met at the ASCO Annual Meeting.

Andrea is an amazing advocate and survivor helping women through the @SHAREing hot line. This OC survivor is thankful for all she does. Thank you @Herzbuk for mentioning the gyn oncs who mean so much to you. @cure_magazine OC Heros. #gyncsm pic.twitter.com/qOd31Z6hjA

— Dee Sparacio (@womenofteal) October 16, 2020

Congrats Dr Deborah Zajchowski @ClearityFnd honoree at @cure_magazine 's OC Heroes Celebration.I remember the time she took to answer my questions during a poster session at an ASCO meeting a few years ago.Thx Dr Deb for helping women find their best treatment options #gyncsm pic.twitter.com/vPgjV5Qxng

— Dee Sparacio (@womenofteal) October 16, 2020

“No matter when you engage with @RobinSCohen, you quickly discover she is 100% present in the moment with you,” – Susan Leighton of @ocrahope #OvarianCancerHeroes pic.twitter.com/w8uPHT0NjN

— CURE Magazine (@cure_magazine) October 16, 2020

 Congratulations, Andrea, Robin and Dr Deb.

 I rounded out October with two Scientific Review Board meetings, an ASCO Clinical Practice Guideline Committee meeting, a Cancer Community Advocacy Board , a planning meeting for a great November 11th #gyncsm chat on PARP inhibitors and an invitation ( which I accepted) to be on the advisory board of an NCI trial on understanding and reducing racial  disparities in ovarian cancer treatment and survival.  

Over the past few months I have become pretty adept at taking part in discussions on WebX platforms as well as Zoom but I really would love to be able to give some in-person hugs.

Stay well and enjoy the color of the world around you.

Dee

Every Day is a blessing!

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!

Power outages, Goodbyes and Looking Ahead

Where did August go? 

Day 5 - working on power lines.

 

During the first week of the month we had a power outage for five days due to tropical storm Isaias. We had no electric, no internet, no landline, no cable and were missing a number of shingles off the peak of our home. Cell phone use was off and on until they installed a generator on the cell tower not far from our home. We tried to be creative making meals on our gas stove to use up all the frozen food which was thawing. To be safe though on the fifth day we still threw out a large bag of food. We spent time conserving the charge on our phones and were happy to have fully charged power backups at the start of the outage. Cold showers were not fun. But sitting outside at sunset when the fireflies came out was pretty awesome. My grandson made up a song about the fireflies and he added to the song each night. The iPads and computers were off, low on power, but no electric was needed to play a rousing game of  Crazy 8's by camping lantern. 

The second week of August was a busy time playing catch up. We were doing things we could not do during the outage : laundry, food shopping, vacuuming and catching up with online work. I got a chance to prep and participate in the August #gyncsm chat on Endometrial Cancer.

The third week of August was a time to say goodbye to my daughter and grandsons. Due to COVID-19, they traveled to the US in late March from their overseas home. During the time they were here, The international school they attend offered remote learning. So the boys spent 5 days each week ( Sunday - Thursday, due to the time difference) doing school work. I enjoyed helping them with their work, learned to use See-Saw and happily took photos and videos for them to send to their teachers. But we also  had time to play, pick strawberries, cook together, build with Legos, draw and paint. It was tough to see them leave but I am happy they are back home with their Dad.

During the latter part of August, I spoke to ovarian cancer patients as a volunteer with Cancer Hope Network, attended two of my cancer centers online webex Scientific Review Board meetings and also had a zoom call with some ovarian cancer survivors. It was so nice to hear and see these women. They are more than ovarian cancer survivors and advocates, these women are my friends, some for over 10 years.

Today I am looking ahead to next month, National Gynecologic Cancer Awareness Month. I  signed up for the OCRA's Ovarian Cancer National Conference which will be held virtually September 29, 2020 - October 2nd. Past conferences have conflicted with vacations and other events so this conferencewill be my first one and I am very excited to attend.

Christina Lizaso and I are busy planning this month's #gyncsm chat on Rare Gynecologic cancers which will be held at 9pm ET on September 9th on Twitter. Did you know that there are different types of ovarian cancer? Do you know how vulvar, vaginal or GTD are treated? Be sure to check our blog for information on how to take part in Twitter Chats. 

I also registered for this year's virtual Kaleidoscope of Hope Ovarian Cancer Foundation Walk. I have been raising funds for ovarian cancer research by taking part in a KOH walk for over 10 years. Support my efforts with KOH a or find a local ovarian cancer walk to help researchers find a screening test and better treatments for ovarian cancer.

This month threw a few curve balls my way but things in the end all worked out. See you in September!

Dee

Every Day is a Blessing!

Pets and Painting From Diagnosis to Today - 15 years

As many of you know from reading this blog, on July 29, 2005 I was diagnosed with ovarian cancer.  I woke up from surgery and heard my gyn onc say the words, " I am sorry Dee, you have stage 3B ovarian cancer." Those words sent me down a road that I would have rather not gone down. A clinical trial consisting of nine carboplatin, taxol and selenium treatments followed that diagnosis. Then I faced more surgery and chemotherapy in 2008 when the cancer recurred on my liver and spleen. But somehow with faith, family, friends and treatments by the most talented, compassionate gynecologic oncologists, I am here today to celebrate my 15th Cancerversary. Thank you Drs. Rodriguez,  Gibbon and Song and the nursing staff at Rutgers Cancer Institute of NJ for the excellent care. 

During most of the fifteen  years of survivorship, I have had a dog. When I was first diagnosed, a pug named Kona greeted me when I got home from treatments and slept on the recliner with me, most times snoring more than I was. Sadly, he passed right after I had surgery for my recurrence.  At the time, I wasn't sure how I could get through my upcoming chemo without a pug on my lap.

After a year and a half later, both my husband and I knew the house was too quiet without a dog. So ten years ago, an All American dog, Amber entered our lives. She was full of energy and loved to jump. So Joe who owned the kennel where we took Amber for puppy training, suggested we train for dog agility.  That has been so  much fun these past few years . I learned something new and I met lots of other dog lovers. It was also an activity in which I totally forgot about my cancer. Amber has been by my side in the ring and on our long walks around town. I hope this continues for many years to come.

Another activity has grown over the past 15 years too. During my initial chemotherapy my son's friend gave me an acrylic paint kit.  I had stayed home while in chemotherapy when my blood counts were low, just like now during the COVID -19 pandemic. Painting helped me pass the time, took my mind off of the side effects and kept me calm as if I was meditating. I started with quilt designs ( I can't sew very well at all) , then some landscapes but I found I enjoy painting dogs the most - big dogs, small dogs, agility dogs and family pets. 

So on this my 15th Cancerversary, I share with you my love of dogs through the paintings I have created during these past fifteen years. 

Kona -a magnificent pug

McCoy -a Viszla

Winston

Coby

Silvio - my grandpup

Chick- an agility dog

Sassy- an agility dog

Princess - a Brittany Spaniel

Bling - an agility dog

Walter - my grandpup

Cooper - an agility dog

Ginger - Bull Mastiff

Gracie - agility dog

Smitten- agility dog

Tim - grand pup ( The only watercolor painting of a dog I have completed to date.)

Amber - my best friend and agility dog

Dee

Every Day is a Blessing!

2020 Blogger Challenge

I am pleased to once again accept Nancy Stordahl's invitation to take part in her  Bloh Hop and  Challenge. 

https://nancyspoint.com/calling-all-bloggers-blog-readers-its-a-summer-blog-hop/)

Staying close to home - and enjoying picking local strawberries.

2020 Blog Challenge Questions:

1. Who are you? Tell us whatever you want about you and your blog.

I started blogging in 2007, two years after I was diagnosed with stage 3 ovarian cancer. I had a hard time finding information and support so I decided to start to write about my journey and share important information with other women diagnosed with ovarian cancer.

2. What has been your biggest blogging challenge during this pandemic, and how have you been tackling it (or trying to)?

I have only written 11 blog posts since March. I felt guilty writing about ovarian cancer news or personal posts when family, neighbors and friends were dealing with or worried about COVID-19.

It wasn’t until the virtual ASCO Annual meeting that I felt comfortable and I began writing again.  I was able to combine the two topics– COVID-19’s impact on cancer patients and survivors.  

3. What is something you’ve accomplished with your blog that you’re most proud of?

My blog opened doors for me. It led me to amazing opportunities as a patient advocate. Sharing my blog with a wider audience is what prompted me to  join Twitter ( @womenofteal) in 2012. It was the Twitter connection I made with Christina Lisazo  and some gyn oncs and a radiation oncologist that spearheaded the community for those impacted by gynecologic cancer with. Which led me to other advocacy oppo Christina and I created - #gyncsm (gyncsm.blogspot.com) . It also led to other opportunities – co-authoring a book, attending ASCO Annual Meetings and presenting at three medical conferences.

4. Share two of your best blogging tips.

First , it is ok to not click “post” as soon as you are done with writing. Save it, step away and come back to do some finishing touches. I do this because I have chemo brain. Many times, I am unable to find the right word so I usually leave blank spots and come back to it later.

Second, keep an ongoing list of interesting topics / writing prompts for just that time when you are struggling to find a good topic.

5. What is one of your blogging goals this year?

Review and update the pages on my blog.  

6. When things get hard, what keeps you blogging, even if not regularly?

Eventually a research study catches my eye or touches my soul and I say to myself – “You should share this.”

7. What is a dream you have for your blog?

My blog was a dream of mine, so I think it is more my dream of spending more time trying to explain my experience through art. I love to paint and sketch.

8. Share a link to a favorite post you’ve written that you want more people to read.

I wish more cancer patients, survivors caregivers would read about how to take part in Twitter communities and chats. There are so many awesome cancer communities ( #gyncsm , #btcm, bcsm, #lcsm, #ayacsm ) offering information , support and tips to their participants.

http://womenofteal.blogspot.com/2019/02/a-2019-guide-to-twitter.html

If you are a blogger - any  blog topic is acceptable why don't you join us.Check out how to take part in Nancy's post ( link above). And be sure to check out the other blogs in her list. 

Dee

Every Day is a Blessing!

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!