Monday, February 28, 2022

Rare Disease Day 2022

Rare Disease Day

February 28th is Rare Disease Day®

Ovarian Cancer is a Rare Disease!

Rare Disease Day is an annual awareness day dedicated to raising the understanding of rare diseases and calling attention to the special challenges faced by patients and the community. 

These gynecologic cancers,

are considered RARE by NIH's Genetic and Rare Diseases Information Center. In the US, diseases that affect less than 200,000 people are considered rare. In 2022, roughly 19,880 women in the US will be diagnosed with Ovarian cancer. 

Why is this Day important? 

Research funding to develop screening tests or treatments in rare diseases may be more limited than more common diseases. Due to the limited number of people with the rare diseases accruing to clinical trials is difficult. Trial designs need to be changed so these trials can take place. As a person with a rare disease, especially people of color and indigenous people, it may be more difficult to find emotional support. This is where online communities are helpful. 

You may find additional information about Rare Disease Day on the  NORD - National Organization for Rare Disorders, Inc website

Do you have a rare disease? What would you like others to know about your disease? 

Dee
Every Day is a Blessing!

 

 

 

 

Monday, January 31, 2022

STRIDE Dashboard Launched

Since my diagnosis, I have followed the statistics for those diagnosed with ovarian cancer. When I was initially diagnosed in 2005,  ACS estimated that the number of women diagnosed with ovarian cancer in NJ would be  ~ 700.  But I often wonder if the number has changed since I was initially diagnosed. I also wondered  where women diagnosed with ovarian cancer lived in NJ.  Were women in some counties being diagnosed more frequently than in other counties? What about women diagnosed with cervical cancer or endometrial ( uterine ) cancer? Did their diagnosis vary by county?

I recently received an email from Dr Anita Kinney (Director of the Cancer Health Equity Center of Excellence)  announcing the launch of the STRIDE Interactive Data Dashboard by the Rutgers Cancer Institute of NJ Community Outreach and Engagement Team and the Cancer Health Equity Center of Excellence. 

"Surveillance, Tracking and Reporting through Informed Data Collection and Engagement (STRIDE) is an interactive data and visualization dashboard (public and institution versions) that includes clinical trials enrollment, biospecimen inventory, tumor registry analytic cases, catchment area information related to the cancer burden, behavioral and environmental risk factors, and demographics.

Features include :

"Cancer Surveillance: Incidence and mortality rates on state and county levels. Cancer screening rates and risk factors are also featured on STRIDE.

User Input Customization: Users can easily filter data to create interactive visualizations. 

Interactive Mapping: Interactive maps include census tract level population and environmental data."

To access the public side of the website please visit  https://published.cinj.rutgers.edu/content/86251f79-09a0-4c9a-b388-361e700af7bf/

I used the site to find data for cancer of the ovary incidence and mortality rate in NJ and downloaded this graph.

 

 

I invite you to check out STRIDE as well as the NJ Cancer Registry website ( https://www.cancer-rates.info/nj/) for information such as incidence per county in map form. I grabbed a screenshot of the cancer of the ovary Incidence Rates (2000-2018). As you can see some counties have higher incidence rates of cancer of the ovary than others. Similar maps will be available on STRIDE.

 

Then I looked at cancer of the cervix for the same years and you can see how the incidence rates in the counties differ from ovarian cancer.


What measures can we take to reach people to raise awareness and treat those diagnosed in those counties?  What causes those counties to have higher rates? Environmental issues?  Socio-economic issues? 

This data will help researchers target areas of my state where services and education need to be increased. 

Does you state have cancer data sites like this one? 


Dee 

Every Day is a Blessing!

Wednesday, January 5, 2022

Guest Post by Nancy's List - Meet Suleika Jaouad

I have been following Nancy's List for a few years. Nancy is an ovarian cancer survivor and founder of a non-profit to support persons living with cancer called Nancy's List. Her website( https://nancyslist.org/)  includes many valuable resources. She is @NancyNovack on Twitter. I invite you to check out her website and Twitter account.

A recent email from Nancy not only included an introduction to survivor and author Suleika Jaoud (@suleikajaouad) but also one of her exercises.  In her piece Suleika states that she reframes "the concept of New Year’s resolutions by writing my way through a five-part series of lists.  I hope you enjoy the read, lists and writing prompts as much as I do. Enjoy !

Thank you Nancy for allowing me to share this with my followers. 

Dee

Every Day is a Blessing ! 

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From Nancy's List  email: 
I am honored to introduce you to Suleika Jaouad. I befriended Suleika many years ago and have always have been inspired and enlightened by her beautiful writing and most importantly, her soul. I want to share her very moving exercise that she shared today.

But first, a little about this lovely woman ...
Suleika’s career aspirations as a foreign correspondent were cut short when, at age 22, she was diagnosed with leukemia. She began writing her New York Times column “Life, Interrupted” from her hospital room at Sloan-Kettering, and has since become a fierce advocate for those living with illness and enduring life’s many other interruptions.

Suleika's essays have appeared in The New York Times Magazine, The Atlantic, The Guardian, Vogue, and NPR, among other publications. A highly sought-after speaker, her mainstage TED Talk was one of the ten most popular of 2019 and has nearly five million views.

She is the creator of the Isolation Journals, an artist-led community and publishing platform that cultivates creativity and fosters connection in the challenging times of the Covid-19 pandemic. She wishes to help others convert isolation into artistic solitude. Suleika calls it "transforming life-interruptions into creative grist." Over 100,000 people from around the world have joined.

Born in New York City to a Tunisian father and a Swiss mother, Suleika attended The Juilliard School's pre-college program for the double bass. She earned her BA with highest honors from Princeton University and an MFA in writing and literature from Bennington College.

Suleika is the author of the instant New York Times best-selling memoir, Between Two Kingdoms.

Suleika has been cancer-free for many years. But her leukemia has returned and she is likely facing another bone marrow transplant. She is in my heart.

And now, to Suleika ...

Hi friend,
In our household, the New Year is the most spiritually, creatively rich season. Jon and I both have rituals around it. In the days leading up, he always squirrels away in his studio with a sheepskin rug and some water for a period of fasting, and I recommit to my daily practice of breathwork and journaling — shocking, I know!

Right now, amid this newest wave of the pandemic, as I begin my second round of chemo, these practices continue to be a lifeline. This has been a seemingly endless season of difficulty and uncertainty for everyone — and yet, as is always the case, it has also contained so many moments of beauty and joy. Journaling is how I make sense of these contradictions and the countless ambiguities of life. It’s how I come to understand the world and my place in it, how I learn to carry all of it — the hard things as well as the wondrous ones. As for breathwork, it’s what keeps me from caterwauling and rending my garments while waiting in a multi-block covid test line.

At the threshold of a new year, I often find myself ruminating about the things I didn’t get done, what I wish I had accomplished, where I need to improve. It’s the voice of my inner critic, a voice I know all too well. To drown out her chatter, I crack the spine of a new journal and reframe the concept of New Year’s resolutions by writing my way through a five-part series of lists.

I start with an inventory of things that I’m proud of, big or small, to savor and celebrate all that unfolded in the last year.

I move on to a second list—of what I’m yearning for. Often in the process, I uncover desires not yet known.

The third list is a tough one but a cathartic one. I write down all the things that are causing me anxiety, from the most mundane inconveniences to looming existential dreads.

My fourth list is a toolkit of sorts. I reflect on all the hard things I’ve gotten through and jot down the resources, skills, and practices that saw me through and that I can return to and rely on in the new year.

My fifth and final list is my favorite: my wild ideas list. I set a timer for five minutes, and in a completely unedited stream of consciousness, I jot down every wild scheme, every grand plan, every creative idea that comes to mind, no matter how harebrained or unrealistic.

These lists are celebratory, energizing, exorcising, reassuring, and motivating. They quell my inner critic, reminding me that I’ve accomplished so much, that I know what I want, that I can face it all, that I have everything I need, and that I can dream as big as I dare.

Your prompt for the week:
In place of resolutions, journal your way into the New Year with five lists.
What in the last year are you proud of?
What did this year leave you yearning for?
What’s causing you anxiety?
What resources, skills, and practices can you rely on in the coming year?
What are your wildest, most harebrained ideas and dreams?

To know more about Suleika ... check out https://www.theisolationjournals.com/about

Disclaimer ... David and I did this exercise out loud and it was very exciting. Just thought you might be interested … 

With immense love and gratitude and wishes to Suleika for her deep healing,
Nancy

 




 

Sunday, January 2, 2022

A spark...


 

We made it through 2021!  

Every year in January I write a post about aspirations. In last year's (Uncharted Waters ) post I was unsure of what the year and the Covid Pandemic would bring our way. While waiting for the vaccine,  I aspired to travel to Maine, finally visit family and friends I hadn't seen since 2019, work with my dog, create more art and continue to advocate for cancer research. In 2021, I put off that trip to Maine but continued my advocacy work by attending conferences virtually.  I did have two vaccine shots and a booster which made me more comfortable going out with my mask on.

As we begin 2022, we sit in the middle of the Omicron variant spike. So once again we are a bit unsettled as to how meetings and travel will be affected this year. But I am hopeful to do some in-person conferences. 

As for other things - I aspire to paint and sketch more. My Christmas present this year was a drawing desk. I am thrilled to have a dedicated place to work . 


Above the desk now hangs a print of the Disney character Figment. Figment in the Disney World Ride "Journey into Imagination" uses his senses and imagination to do all sorts of things. 


The Ride theme song " One Little Spark" lyrics start off-

One little spark, of inspiration
Is at the heart, of all creation
Right at the start, of everything that's new
One little spark, lights up for you

I hope this print sparks me to look at details and helps me create anew.

Now on to 2022 with all its potential!

Dee

Every Day is a Blessing!


Thursday, December 30, 2021

Blogging for 14 years

 

I-Stock graphic

 

 It seems like only yesterday when I wrote, 

"Today I took the plunge and decided to make this blog. I guess you could say it is an early New Year's resolution. In addition to sharing my thoughts on this journey, I will post links and information relevant to women diagnosed with ovarian cancer in New Jersey."

It was December 30, 2007, fourteen years ago.

This year as in 2020 meetings and conferences were virtual so many of my posts dealt with what I learned in those virtual meetings. I admit I miss meeting in person the researchers, gynecologic oncologists and advocates I respect and admire. I hope as more people are vaccinated and boosted and omicron lessens we can go back to meeting face to face.

When I looked at my stats for this year, I found my blog was viewed 33,000 times in 2021. My top five most viewed posts in 2021 include:


As I look back,  I see that during certain years,  I wrote more frequently than at other times. It seems as my advocacy roles on Review Boards, Data Review Committees, Citizen Scientist Committees, presenting at meetings and moderating the #gyncsm Community with Christina grew, the number of blog posts dropped. I am not sure what 2022 will bring, but  I will continue to strive to stay true to that original statement as long as my followers find the information helpful.

I'll catch you in January with my aspirations for 2022 .
Stay Safe and Stay Well!

Dee
Every Day is a Blessing!

Thursday, December 16, 2021

Let's talk about Secondary Cytoreductive Surgery DESKTOP results and more...

As many of you know when I recurred on my liver and spleen, I chose to have surgery followed by chemo. I made that decision after being offered three options.  Option 1 surgery first then chemo ( carbo /taxol). Option 2 chemo first then surgery.  And a clinical trial (GOG 213 ). I chose surgery first followed by chemotherapy.

The question about the benefits of a second surgery on recurrence has been ongoing. Last year at the SGO meeting there was a excellent discussion of the pros and cons given by Dr Gardner and Dr Coleman during the Education Forum. See this blog post

Two of the trials that were discussed during the Forum included SOC-1 and GOG-213 .

SOC 1 

"Eligible participants were randomly assigned (1:1)... to undergo secondary cytoreductive surgery followed by intravenous chemotherapy (six 3-weekly cycles of intravenous paclitaxel [175 mg/m2] or docetaxel [75 mg/m2] combined with intravenous carboplatin [area under the curve of 5 mg/mL per min]; surgery group) or intravenous chemotherapy alone (no surgery group)."

The reported results showed a median progression-free survival (PFS) of 17.4 months in patients who had surgery and 11.9 months among those who did not have surgery. The trial has not yet reported Overall Survival (OS) numbers. 

Conclusion: "Secondary cytoreduction followed by chemotherapy was associated with significantly longer progression-free survival than was chemotherapy alone in patients with platinum-sensitive relapsed ovarian cancer,..."

GOG 213 

"The GOG-0213 trial is an open-label, phase 3, multicenter, international, randomized clinical trial designed to assess two clinically relevant hypotheses: that bevacizumab added to paclitaxel and carboplatin chemotherapy followed by maintenance bevacizumab improves overall survival (chemotherapy objective) and that secondary surgical cytoreduction in platinum-sensitive, surgically amenable patients improves overall survival (surgical objective)."

This study did not show any significant difference in PFS or OS in those who had secondary surgery and those who did not.

Conclusion:

"In this trial involving patients with platinum-sensitive, recurrent ovarian cancer, secondary surgical cytoreduction followed by chemotherapy did not result in longer overall survival than chemotherapy alone."

DESKTOP

 Earlier this month, the DESKTOP trial results was reported in the NEJM.  https://www.nejm.org/doi/full/10.1056/NEJMoa2103294

This trial involved "first re- lapse after a platinum-free interval ... of 6 months or more to undergo secondary cytoreductive surgery and then receive platinum-based chemotherapy or to receive platinum- based chemotherapy alone. Patients were eligible if they presented with a positive Arbeitsgemeinschaft Gynäkologische Onkologie (AGO) score, defined as an Eastern Cooperative Oncology Group performance-status score of 0 (on a 5-point scale, with higher scores indicating greater disability), ascites of less than 500 ml, and complete resection at initial surgery."

In the study the median OS was 53.7 months for those who had surgery and 46.0 months in those that did not have surgery.  Patients with a complete resection (all visible disease removed) had a median overall survival of 61.9 months.

Conclusion: 

"In women with recurrent ovarian cancer, cytoreductive surgery followed by chemotherapy resulted in longer overall survival than chemotherapy alone. "

An editorial written by Drs Gardner and Chi ( also in the NEJM) regarding the DESKTOP trial and the SOC and GOG trials provides an excellent analysis of the differences in trial design, patient selection, quality of surgery and use of bevacizumab. https://www.nejm.org/doi/full/10.1056/NEJMe2116353

I may be biased, since my second surgery has kept me disease free for years, but I hope going forward secondary surgery, where appropriate, is included in all discussions between women with recurrent ovarian cancer and their gynecologic oncologists. 

Thank you Drs Lars Henning (@mdlhenning) and Maria Kfoury (@kfoury) for the Twitter discussion on the DESKTOP results.

Dee
Every Day is a Blessing!

 

Thursday, November 11, 2021

Advocacy - the Good and the Loss

Since my last post, my advocacy work has been time consuming but worth it since I felt good about the "work" I was doing. There were two Scientific Review Board meetings, two ASCO Evidence Based Medicine Committee meetings, two #gyncsm chats ( Genetic Testing and Gyn Cancers , Talking to Family and Friends about Cancer and Cancer Risk), two Citizen Scientist Workgroup meetings, a Community Cancer Action Board meeting and support calls for Cancer Hope Network. I also was involved in submitting two journal articles.  I can't wait to share them early next year. 

Those were the good things. But with those comes the sad parts. During a support group meeting in October the moderator asked me why I didn't write about those sad parts.At that time it was too difficult.

I met Nadia through Twitter. In December 2020, she reached out to me via direct message on Twitter.   She had been diagnosed with stage 3 high grade serious ovarian cancer.  Nadia Chaudhri was a neuroscientist in Canada. She taught, had a lab and mentored students. She was married with a young son. We didn't speak too much about treatments except for maintenance therapies. But we did talk about emotional issues. How to find a new way to live after ovarian cancer,  sharing the best times with our loved ones and talking to children about our cancer. In February, she told me the lesion was gone . We talked about savoring that good news. In DMs, we talked how I plot my CA-125's and how much to this day I still get anxious when I need to go for that blood test.

She shared on her public Twitter account about ovarian cancer, her treatments and hospitalizations, and her family. She gained thousands of followers.  In May, she learned her cancer had recurred. In a Tweet , she shared how she told her son she was dying of cancer.  GMA published her story Mom gets outpouring of love from Twitter after revealing she has to tell her son she is dying (https://www.goodmorningamerica.com/wellness/story/mom-outpouring-love-twitter-revealing-son-dying-77674650). In a DM, I shared that my mother passed away when I was young and how I thought that telling her son was a loving act.

In September , Ovarian Cancer Awareness month, she shared her story on the GMA website to raise awareness of symptoms in  Mom dying of ovarian cancer shares what she wants women to know about the deadly disease (https://www.goodmorningamerica.com/wellness/story/mom-dying-ovarian-cancer-shares-women-80167654) . She also raised funds to support underrepresented scholars in her research area.

On October 5th, at the age of 43 Dr Nadia Chaudhri died. 

I read a tweet saying she had passed and sat at my desk and cried. I never met Nadia in person yet her life affected me so, so strongly. I had a hard time explaining to my husband as he saw me crying how a women I only met because we had ovarian cancer could have such an strong affect on me. I still can't explain it except that Nadia was an extraordinary woman. 

Dee
Every Day is a Blessing!