Online #coronavirus Information for Cancer Survivors

There is a lot of information available on the internet about the COVID -19 virus ( #coronavirus ) and what we know changes daily. Those with underlying conditions such as heart, lung  or kidney disease and compromised immune systems are at greatest risks. .

The best place to get your information is directly from the CDC. The page is updated regularly.
https://www.cdc.gov/coronavirus/2019-nCoV/summary.html
The CDC has a special page for People at Risk for Serious Illness from COVID-19
https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

The WHO  ( World Health Organization) provides information at https://www.who.int/emergencies/diseases/novel-coronavirus-2019 .

Cancer.net has a page with advice for cancer patients ( https://www.cancer.net/blog/2020-03/coronavirus-2019-what-people-with-cancer-need-know) as do a number of cancer centers. Here are a few website,

Fred Hutch  - Corona Virus : What Patients Need to Know
https://www.fredhutch.org/en/news/center-news/2020/03/coronavirus-what-cancer-patients-need-to-know.html

Memorial Sloan Kettering Cancer Center - Novel Coronavirus(COVID-19) What You Should Know
https://www.mskcc.org/experience/become-patient/novel-coronavirus-covid-19

MD Anderson Cancer Center  - 2019 Novel Coronavirus Precautions
https://www.mdanderson.org/patients-family/becoming-our-patient/planning-for-care/coronavirus-protections.html?intcmp=HPFaces1_coronavirus_03052020

If you are like me and are interested in a visual way to see data regarding COVID-19 cases you may view Coronavirus Global Cases by Johns Hopkins CSSE at https://gisanddata.maps.arcgis.com/apps/opsdashboard/index.html#/bda7594740fd40299423467b48e9ecf6

You may also want to check to see if your county has specific information about COVIS-19 for their residents like my county in NJ.(http://www.mercercounty.org/departments/division-of-public-health/coronavirus-disease-2019-covid-19-outbreak ) 

Remember to follow this advice:

 If you have symptoms ( Fever, Cough, Shortness of Breath) or questions regarding your specific situation, please contact your Health Care Provider .

Dee
Every Day is a Blessing!

ASCO Releases the Germline and Somatic Tumor Testing in Epithelial Ovarian Cancer Guideline

On January 27, 2020, ASCO released the Germline and Somatic Tumor Testing in Epithelial Ovarian Cancer Guideline.  

© 2020 American Society of Clinical Oncology, all rights reserved.

Recommendations from the ASCO website include:

"All women diagnosed with epithelial ovarian cancer should have germline genetic testing for BRCA1/2 and other ovarian cancer susceptibility genes

In women who do not carry a germline pathogenic or likely pathogenic BRCA1/2 variant, somatic tumor testing for BRCA1/2 pathogenic or likely pathogenic variants should be performed. 


Women with identified germline or somatic pathogenic or likely pathogenic variants in BRCA1/2 genes should be offered treatments that are US Food and Drug Administration (FDA) approved in the upfront and the recurrent setting. 

Women diagnosed with clear cell, endometrioid, or mucinous ovarian cancer should be offered somatic tumor testing for mismatch repair deficiency (dMMR). 

Women with identified dMMR should be offered FDA-approved treatment based on these results. 

Genetic evaluations should be conducted in conjunction with health care providers familiar with the diagnosis and management of hereditary cancer. First- or second-degree blood relatives of a patient with ovarian cancer with a known germline pathogenic cancer susceptibility gene variant should be offered individualized genetic risk evaluation, counseling, and genetic testing. 

Clinical decision making should not be made based on a variant of uncertain significance. 

Women with epithelial ovarian cancer should have testing at the time of diagnosis. "

You may read the complete guideline with recommendations and evidence from the 19 studies reviewed for the guideline at https://www.asco.org/research-guidelines/quality-guidelines/guidelines/gynecologic-cancer#/142631 

Dee
Every Day is a Blessing.

Sharing the Best of Cancer Communities on Twitter

Earlier this month I traveled to Houston, invited to speak at the NRG Oncology Semi-Annual Meeting during a Social Media Workshop.

I was a bit nervous but also excited to share with oncologists and other cancer professionals: what is community, how cancer hashtags were developed, how cancer communities were founded on Twitter, the benefits of cancer communities and how we can learn what patients need from these communities.

Did you know that most Twitter cancer communities were founded by patients and that many of their moderators are oncologists? Did you know that many of these communities hold regular chats?
Did you know that both #bcsm and #gyncsm have had papers published based on their community members needs and support they find in these communities.

• #bcsm published Twitter Social Community is an Effective Tool for Breast Cancer Patient Education and Support: Patient -Reported Outcomes by Survey  (https://www.jmir.org/2015/7/e188/) in the Journal of Medical Internet Research in 2015 and concluded that patients perceived knowledge increased and anxiety decreased after participation in a Twitter Social Media support group. 
• #gyncsm published in the Journal of Patient Centered Research and Reviews in an article titled, The Needs of Women Treated for Ovarian Cancer: Results from a #gyncsm Tweet Chat (https://digitalrepository.aurorahealthcare.org/jpcrr/vol5/iss2/3/) . Authors found that women felt more vulnerable and had increased emotional concerns after treatment ended while during treatment women were more concerned about side effects and physical concerns during treatment. 

I finished up my talk with these comments/recommendations.

I hope that more oncologists and patients will participate in these communities - we have so much to learn from each other.

I want to than NRG Oncology ( @NRGonc),  Dr T. Julian ( @TBJulianMD) and Dr Becca Previs (@BeccaPrevisMD) for the opportunity to share my knowledge of Twitter Cancer Communities with you.


Dee
Every Day is a Blessing!

Beginning a New Decade

Welcome to 2020!

I wish all my readers a very Happy and Healthy New Year.

At the start of every year I always find it amazing that I am still here. In 2005 when I was diagnosed with stage 3 ovarian cancer I really wasn't sure I would make it to 2007 yet here I am. It may sound cliche but I feel very blessed.

As many of you know I do not make New Year Resolutions. Instead I make a list of things I aspire to do during the upcoming year.

In last year's list I wrote: 

• I aspire to consistently attend yoga class.

I signed up for a yoga class at a local studio called One Yoga and a friend who was training to be a yoga instructor ( she just got certified) also invited me to her house for a few sessions. I found taking yoga was beneficial to me - better breathing, less stress and much better posture. I wish that I had started it sooner. The owner of the yoga studio I attend shared her message for 2020 and in it she said to be open to good energy, focus on the positive and keep what is good. Pretty good advice I would say .

What else do I aspire to do in 2020?  When I looked over last year's list I see a few things that have been on my list for  many years. I'll just keep them here and keep trying to make them happen.

• I aspire to continue to support women diagnosed with ovarian cancer through this blog and the  #gyncsm  community, to share my story as an ovarian cancer survivor and to promote ovarian cancer research. (I have had this aspiration for 5+ years)
• I aspire to travel to Maine in 2019.  ( This has been on my list since 2016. But I'll keep trying .)
• I aspire to build an even better bond with my dog Amber so we can improve our work at the masters level in agility. (This one has also been on my list for years and as long as we have fun doing agility it will stay here.) 
• I aspire to go kayaking.

• I aspire to spend more time doing watercolor paintings. I tried pastels, it was one of the things I aspired to last year, and enjoyed it but I am going to change this one up a bit. This year I will concentrate my watercolor painting. My son and daughter-in-law gave me water color brushes for Christmas so I am psyched to give them a try.
  
• I aspire to step away from social media for a period of time each week and make connections in person - call or visit. MaryAnne, Florence and Linda I promise to reach out soon. 

What do you aspire to do in 2019?

Dee
Every Day is a Blessing! 

12 Years a Blogger

This post will be my last one of 2019 and it marks my twelfth year writing this blog. This blog has opened doors to so many other advocacy activities and I am grateful for those opportunities.

I had some wonderful advocacy opportunities this year.

I continued to blog for Globeathon. My latest post was advice on Holidays Past .

I have become more active as an ASCO member, too. In June, I spoke with Dr Elizabeth Dickson at the ASCO Annual Meeting in Chicago on the needs of gynecologic cancer patients (http://womenofteal.blogspot.com/2019/06/asco-reporting.html). And in late September, I traveled with other ASCO members to ask Congress for support of three bills that could impact the lives of people diagnosed with cancer (http://womenofteal.blogspot.com/2019/10/asco-advocacy-summit.html). I also became the patient representive on ASCO's  Clinical Practice Guidelines Committee and the Social Media Workgroup.

I continue to  serve on the Scientific Review Board at Rutgers Cancer Center of New Jersey and am also a patient advocate on the Community Advisory Council. In September, I presented my story as an ovarian cancer survivor at the Gynecologic Cancer Awareness event at RCINJ as well as to a class of social work students at Rutgers University. 

Working with other Twitter Cancer Community leaders and social media experts,  I helped author Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities 
JCO Clinical Informatics  https://ascopubs.org/doi/full/10.1200/CCI.18.00124


I also continued to co-moderate the #gyncsm Community on Twitter chats with Christina Lizaso and covered some really important topics such as  Maintenance therapies, PARP inhibitors and the origination of high grade serous ovarian cancer. 


I look forward to seeing what 2020 will bring to my advocacy, this blog and the future of ovarian cancer research. 


Dee
Every Day is a Blessing!

Holiday Wishes

I want to wish my followers and friends the Happiests of Holidays. Whether you celebrate Christmas, Hannukah or Kwanzaa may this season be one of Peace, Love and Light.

 

Every Day is a Blessing! 

Dee

A Virtual Gift of Resources

It is hard to believe that it has been a month since I last posted. Life can certainly keep one busy.

As I prepare for the holidays, I thought about doing something for my readers.

Here is my virtual gift to you - my choices of the best, most useful, reliable and sound sources of information and support for women diagnosed with cancer.

 Dee's Best Resources List

Best General Cancer Information Sites:

Cancer.net https://www.cancer.net/

NCI Cancer Types https://www.cancer.gov/types
American Cancer Society https://www.cancer.org/cancer.html

Best Ovarian Cancer Information Sites:

Foundation for Women's Cancer   https://www.foundationforwomenscancer.org/
NCI Ovarian cancer site https://www.cancer.gov/types/ovarian
American Cancer Society https://www.cancer.org/cancer/ovarian-cancer.html
OCRA https://ocrahope.org/


Best Support Platforms:
Online Membership required
Inspire (OCRA) https://www.inspire.com/groups/ovarian-cancer/
Smart Patients https://www.smartpatients.com

SHARE  https://www.sharecancersupport.org/
LiveSTRONG https://www.livestrong.org/we-can-help
Cancer Support Community https://www.cancersupportcommunity.org/online-cancer-support
Survivorship Toolkit https://www.sgo.org/clinical-practice/management/survivorship-toolkit/ 
Support Connection https://supportconnection.org/

Best Hereditary Cancer Information
FORCE https://www.facingourrisk.org (Includes Peer support)
Sharsheret https://sharsheret.org/
National Society of Genetic Counselors http://aboutgeneticcounselors.com/

Treatment Guidelines and Information
NCCN : https://www.nccn.org/patients/guidelines/ovarian/index.html
CA-125 Information https://www.foundationforwomenscancer.org/wp-content/uploads/FWC-CA-125-Levels-Your-Guide.pdf