Thursday, September 16, 2021

Mixed Feelings During Ovarian Cancer Awareness Month

September is Ovarian Cancer Awareness Month. 

There is so much more information available today for women to learn and be aware of the disease than back in 2005 when I was first diagnosed .Ovarian cancer organizations are doing awareness campaigns and raising funds for research this month and throughout the year. I makes me so happy to see graphics like these on social media. (NOCC, OCRA, Sandy Rollman Ovarian Cancer Foundation, Michigan Ovarian Cancer Alliance and  Norma Leah Ovarian Cancer Initiative






 


Don't get me wrong I am so happy there is a month to highlight Gynecologic Cancers and  Ovarian Cancer in particular. But being a survivor during this month can be difficult. It brings a wide range of emotions from happiness to sadness to feelings of anxiety and gratefulness. It doesn't help that September is also the month for my annual visit to see my gyn onc.

It is a time where thoughts of my diagnosis, recurrence and treatments are front and center - every single day. 

It brings back memories of what it felt like to hear I had stage 3 ovarian cancer. I remember the issues I had  recovering from surgery, all the side effects from chemo and trying to find a new way to live as a cancer survivor. I think about feeling good about having a normal CA-125 yet finding out that a  CT scan showed a recurrence. I think about the decision I made to do surgery first and then chemo when I recurred. I think about the time I spent in the hospital when I had a serious reaction to the Carboplatin I took during recurrence.  I think about my feelings while in the hospital when I realized that I could no longer use a treatment that was the best for me. 

I am sad when I think about women who lost their lives to ovarian cancer through these past 16 years as I continued moving forward:

Gail, Lois, Sandy, Grace, Erika, Pamela, Rita Kay, Carol, Jean, Janice, Terry W, Shari...

I think of the women I have spoken to as a peer to peer support person for Cancer Hope Network. There  are some I no longer have to call or email. The connections are strong even if the only thing we had in common was our disease.

I think of my fellow survivors who deal every day with side effects from treatment and fear of recurrence.  There are those who have had multiple recurrences and have had multiple different types of treatment We support each other because we "get it". Thank you to each and every one of them in my little network in NJ and online. 

 I am grateful for the gynecologic oncologists, nurse practitioners, social workers and pharmacist who treat women. And lastly I am grateful for all those researchers who chose to make their life's work understand how ovarian cancer develops and spreads and the best way to treat it. 

So as I work through these feeling during this year's awareness month, I wish you good health. 

Take care,

Dee

Every Day is a blessing! I am blessed to have family by my side through it all.

 



Sunday, September 5, 2021

2021 Blogger Challenge - Nancy's Point

As we close in on the unofficial end of summer I am happy to take part in Nancy's blogger challenge. I have been doing it since 2018. 

 2021 Summer Blogging Challenge Questions:

1. Who are you? Tell us your genre, how long you’ve been at it, who or what inspires you or whatever you want us to know.

I wear a number of different hats but for this blog I am a cancer research advocate. I started writing this blog in December of 2007 with the goal of sharing my story as an ovarian cancer survivor. Through the years it has morphed into where I not only share my story but I report on cancer research, clinical trials and share what I learn from oncology conferences I attend.  
 
I am inspired by the researchers who spend years of their lives in search of better treatments and cures for cancer.

2. What’s been your biggest blogging roadblock this year and did you come up with a way to get around it? (If you didn’t, that’s okay too. We’re here to support you.)

Roadblock? Yes, there were quite a few but finding the time is top on the list. I took on the roll of President of my homeowners association so that has taken a big chunk of time every week. I also have commitments on two Boards at my cancer center. Family commitments have started to ramp up again as more folks get vaccinated agains COVID. 
 
In a way with COVID  being center stage for so much of the past year coming up with other topics was a challenge too.

3. What’s something you accomplished with your blog this year that you’re proud of?

I made sure all the links on my resource page were correct. I last did a check in 2019.

4. What are a couple of your best blogging tips?

Be sure to review you post - check links and spelling and grammar. I like to write a post as a draft, leave it for a few hours and come back and reread with fresh eyes. 
 
Keep writing! Even if it is once a month.  You never know who will read what you post. What you share may mean that person has a better day. 

5. How do you handle negative feedback or comments?

How I handle it depends on the type of negative comment. I ignore some. While others I will respond once but only once.

6. Share a link to a favorite post you’ve written RECENTLY (since last year’s challenge perhaps) that you want more people to read.

One hat I wore last year was co-author of a book for women who are diagnosed with ovarian cancer. Read about it here>  http://womenofteal.blogspot.com/2021/07/and-fourth-edition-is-published.html. 

Check below for some of the other blogs that chose to take part in Nancy's challenge:


Dee 
Every Day is a Blessing!

Monday, August 16, 2021

Tips for Tweeting from a Live or Virtual Oncology Conference

Last week, Kim Richardson, fellow cancer advocate, asked me about the template I use when I  report information from cancer meetings and conferences. I realized I had never actually shared the process I use when I Tweet from an ASCO, SGO or OCRA meeting. I concentrate on sharing information on Twitter but feel free to adjust the process a bit if you are disseminating information on other  social media platforms.

Prior to the meeting

Register for the meeting in advance of the meeting, if possible. This will allow you time to download and become familiar with the meeting app, if there is one. Even from year to year you might have to update the app. 

Review the agenda to see which sessions you want to attend. Make yourself a schedule. If the meeting app allows you to create a personal schedule take advantage of that and add sessions to your personal schedule. Or keep a word or excel document listing the date / time / session / presenter name/ trial name . This will make it easier to copy and past the session name, presenter name into a Tweet. Even if sessions conflict,  add them to the app or your list. This way you can listen to those sessions at a later date.

Read abstracts as they become available so you are familiar with the data that will be presented and adjust your schedule as needed.

Set up Tweet Deck or a similar application so that you can follow the meeting #hashtag.  If you don't want to use an app you can use Twitter itself. (Search for the meeting hashtag and look under the "latest" tab.) If the meeting has oncologists live tweeting, such as ASCO Featured Voices, follow them ahead of the meeting. They may list sessions they are important and look forward to attending. Their tweets will show up in your feed or the meeting hashtag's feed too. No need to create original content from all sessions of the meeting.  It is OK to  retweet other reliable researchers tweets. Such as this one from Dr Dizon at #ASCO21

Day of the meeting

Log into the meeting/app 10 minutes or so before the start of the session. This way if there are updates to the app or the schedule you have time to make adjustments. If you are attending a live meeting try to sit in an area by the presenter or a large screen that will show the presenter's slides.  

Open Twitter and search for the meeting hashtag.  Choose the latest tab. If you are using Tweetdeck or another app make sure the column you created for the meeting app is located in view. ( I follow a few hashtags regularly, so I may have to shuffle the columns around a bit.)

Prepare tweets I copy and past the presenter and session name along with the meeting hashtag and trial name if there is one into a blank tweet. If you are using Twitter, you can add a tweet to the original one so you only have to add the names once and provide more info that what you could fit in 240 characters. If I add tweets, I try to number the tweets 1/4, 2/4 or 1/n.  This is a start of a tweet from this year's ASCO meeting.

Oral Abstract Session
Gynecologic Cancer #ASCO21 #gyncsm 
@rodrocconi Novel GEM vaccine vs placebo

Listen and Compose tweets with pertinent info such such as disease type and trial outcomes or concerns about the trial. I always add #gyncsm to my tweets for gynecologic cancers.

Screen shot interesting slides (if sharing is allowed) to use in Tweets during or after the session has ended. I usually concentrate on trial outcome graphs or conclusion slides.

If sessions include discussion of a few presentations,  I will try to take a screen shot of the group of scientists discussing the research and comment on any new information. Such as this one from ASCO on HPV vaccination rates.

After the meeting 

Blog or share your tweets on  other platforms . Simple go to the tweet you want to add to your blog and click on the ... in the top right corner. Click on embed tweet. Go to the html page of your blog and paste the text on to the page. 

Let me know if you give any of my steps a try. Plus, I'd love to hear if you have other tips too.

Dee
Every Day is a Blessing




 



Thursday, July 29, 2021

A Different Kind of Sweet 16

In 2019, my sister sent me an old photo from my Sweet 16 party. It was a small party at my home with a few friends from high school. In the photo were Kathy, Karen, Patty, Ilene, Mindy and Debbie who were   fellow twirlers and classmates. Everyone in the photo was smiling. I remember it was a fun day. 


Today, July 29th, I celebrate another Sweet 16. 

On this day in 2005, I woke up from surgery to hear my gynecologic oncologist say " I am sorry Dee, you have stage three B ovarian cancer but I will do everything I can to make you well. " I am here writing this blog sixteen years later because of the treatments I received at the Rutgers Cancer Institute of NJ , the care provided by Dr Rodriguez, Dr Gibbon and their team, the support of my family and friends and my faith. 

Today I am thankful for these Sweet 16 years of life. 


Dee

Every Day is a Blessing!


Thursday, July 15, 2021

And the Fourth Edition is Published !

In 2005, shortly after my diagnosis,  I picked up the second edition of a book titled 100 Questions and Answers about Ovarian Cancer. I referred to it through out my intial diagnosis and recurrence and used post-it notes to mark important topics. 

In 2015, Dr Dizon asked me to share my voice and experience in the 3rd edition. I was honored to be a part of the publication. 

Fast forward to 2019 the Drs Don Dizon and Vance Broach asked me once again to work on the 4th edition of 100 Questions and Answers about Ovarian Cancer ( Jones & Bartlett Learning).  I was thrill to be part of the updated edition. The book includes the latest information on front line and recurrence treatments including PARP inhibitors, as well as maintenance therapy information and coping strategies. See this on Twitter last Saturday made my day!

 

The book is available through Jones and Bartlett ( https://www.jblearning.com/catalog/productdetails/9781284183115) or  Amazon (https://www.amazon.com/Questions-Answers-About-Ovarian-Cancer-dp-1284183114/dp/1284183114/ref=dp_ob_title_bk). Be sure to check that it is the  new 4th edition so you get the most up to date information. 

I hope those who read this edition find it as helpful as the 2nd edition was to me.

Dee

Every Day is a Blessing!

Thursday, June 10, 2021

#ASCO21 Cancer Disparity Sessions

The theme for this year's ASCO annual meeting was EQUITY: EVERY PATIENT EVERY DAY EVERYWHERE.  I attended a number of sessions including  Equality in Care for All Women: Addressing Disparities in Gynecologic Malignancies and Social Determinants, Not Biology: Time to Reappraise Genetics- Based Theories of Racial/Ethnic Cancer Outcome Disparities and More Than the Patient: Structural Racism and Cancer Disparities.

Here are the tweets I posted during the sessions.

https://twitter.com/womenofteal/status/1400889490294648837?s=20 

Equality in Care for All Women: Addressing Disparities in Gynecologic Malignancies

Opening Session

 

Social Determinants, Not Biology: Time to Reappraise Genetics-Based Theories of Racial/Ethnic Cancer Outcome Disparities 

 

More Than the Patient: Structural Racism and Cancer Disparities

 

There are so many areas where we all can improve the care for "every patient everywhere" and these open  and honest discussions can make these needed changes happen.  

 

Dee

Every Day is a Blessing! 

Tuesday, June 8, 2021

ASCO 2021 Oral Abstract Session - GYN Cancers

I'll begin my coverage of the #ASCO21 Annual  meeting I have been attending virtually with comments and tweets from the Monday June 7th Gyneocologic Cancer Oral Abstract session. 


 

Not all the studies report were "blockbuster", not all provided results the researchers expected but in each and every one of them we - researchers, clinicians and patients learned something. 

 Here is my tweet summary:  

OVARIAN CANCER

PDL1 inhibitor / Neoadjuvant chemo plus Bevacizumab

GEM vaccine  (Gemogenovatucel)

Bevacizumab 15 months vs 30 months 

Agent given to highlight tumors with overexpression of folate receptor Alpha during surgery

Mirvetuximab plus Bev for recurrent OC

Adavosertib w and w/out Olaparib

Endometrial Cancer 

Intensive Follow-up after endometrial cancer treatment

mTOR inhibitor and Anastrozole 

Pertuzumab and Trastuzumab in uterine cancer patients with ERBB2/ERBB3 

 

Over the next few days I'll be sharing tweets from the disparity, plenary ( cervical cancer study)  and poster sessions. Stay tuned. 


Dee

Every Day is a Blessing!