March 8, 2023 Open Mic and 100th Chat

What better day than International Women's Day to celebrate our 100th Chat. We had fifteen participants join us. You may find our transcript here and additional analytics here.

We began the chat by sharing our updated logo.  

The colors now reflect more gynecologic cancer awareness colors. 

We shared how #gyncsm chat sessions have been used in three different journal articles. You can view links to these as well as links to articles that reference cancer hashtag communities on our blog's  Publications page: http://gyncsm.blogspot.com .

Next we talked about our chat topics through the years. Check our Chat Topics page (http://gyncsm.blogspot.com/p/chat-topics.html) on our blog to see other topics. Here are three chats mentioned. 

• "Research Advocacy" with @RANAdvocate
• "Immunotherapy" with@CSHinrichsMD and patients @SurvivorSueWDC @mandmsportsmom who shared directly about being in a trial.
• "Reading Scientific Posters" with @KDRichardson924 and SASEP team

Next we discussed the OCRA Ovarian Cancer Screening and Symptom Awareness Consensus Statement . 

"#gyncsm re use of symptoms; important of course for early care advocating for work up but it is important re nuances also bc many pts coming blaming themselves for not knowing or coming in earlier when sometimes not be possible. I liked this summary,"

Two participants shared projects or campaigns they are working on. 

We are a nonprofit raising funds for #ovariancancer research, and promoting scientist/survivor collaboration in research. Sending 2 advocates to AACR next month to participate in SSP. #gyncsm

— Powell-Drescher Ovarian Cancer Research Foundation (@PowerOvarian) March 9, 2023

I'm starting a non-clinical gynecologic oncology patent navigator practice. I've been busy applying for grant funding. I will also handle financial matters. #gyncsm

— Codemo Writing Services (@roberta_codemo) March 9, 2023

We closed our chat in the usual way asking for TIL "Today I learned" and @gyncsm began by sharing:

From #gyncsm Chat #1:
TIL: This community is fantastic. I have high hopes for us - and glad to have found all of you. @drmarkham

TIL: A new way to connect and share with a community of people living with, advocating for and caring for GYN cancers! awesome! @eberrygynonc

— Christina Lizaso (@btrfly12) March 9, 2023

There is no chat in April but Save the date for our next #gyncsm chat on Wednesday, May 10th, at 8pmET to talk about “Urogynecology and Pelvic Health”. 

Dee

Open Mic and 100th Chat March 8, 2023

 

Christina and I are happy to invite you to #gyncsm's Open Mic and 100th Chat on Wednesday March 8. 2023 at 8pm ET. It seems like only yesterday when together with three gynecologic oncologists, Drs Dizon, Markham, and Boulay, we held our first chat in September 2013. 

To celebrate our 100th chat, we updated our logo.  

We've added three intersecting ovals (teal, peach, purple) to represent the intersection of those impacted by different gyn cancers into one community.

We thank each and every guest host and health care provider and researcher for providing important information to countless patients, survivors, advocates and caregivers through these chats. Our topic list is lengthy, but we focused our chats on the gyn cancers and their risks, advocacy, caregiving, quality of life, clinical trials, research results, news from medical conferences, genetics and personalize medicine, emotional and physical support, survivorship issues, recurrence, and how to work best with your doctor. Have a look at them all here.

On Wednesday we will open the floor to questions from this broad community in this 8th edition of an "Open Mic" chat. 

What's on your mind? 

• Do you want to discuss OCRA's  recent consensus statement on fallopian tube removal to reduce risk of ovarian cancer? Or how to participate in OCRA's program free genetic testing program? 
• Do you want to share your experience in a clinical trial? Or how to discuss clinical trials with your doctor?
• Do you want to discuss the latest research in treating endometrial cancer?
• Do you want to know what you can do to improve equity of treatment?  
• Do you want to discuss the  use of mirvetuximab soravtansine-gynx, Elahere,for women with recurrent ovarian cancer? 
• Do you want to know if others are experiencing QOL issues like yours? 
• Do you want to discuss low-dose aspiring use for ovarian cancer risk reduction? 
• If you are a health care provider, do you want to know where your patients get information? 
• Do you want to talk about getting involved in advocacy? 

 

What better day to join with other patients, survivors and health care providers that on International Women's Day. We hope to see you on Wednesday. 

Dee and Christina

#gyncsm co-foudners

Dec. 11, 2019 Survey Results and Open Mic

What a nice way to end 2019, by sharing the results of our Community Survey followed by an Open Mic night. We were happy to have 17 participants. It was great to see some regulars and to welcome some new folks to the evening's chat. You may find additional analytics here. A complete transcript may be found on Symplur.

We shared five graphics showing some of the results of our survey.

Who responded to our 2019 survey?

How did participants interact with the community?

What was learned and used by survey participants?

 What were the most important topics covered in #gyncsm chats? 

How can #gyncsm do better? 

We then moved on to the Open Mic portion of the hour. We opened the floor for comments or questions from the community. Comments and responses may be found below. 

1. The difficulties women with ovarian cancer have getting into phase 3 clinical trials and recruiting minorities to clinical trials. 

• Clinical trials are tough as each one is so different and finding even the right contact person at each site is a challenge. @power4patients and others have good resource collections but still daunting
• You can find all the clinical trials open in the country on https://clinicaltrials.gov/  You can search under ovarian cancer. Or often times your local health networks will have them on their website.
• Is it based on location, I wonder, or other factors about age, stage, and treatment? I wonder if that will change when a PARBs more readily available earlier no matter what BRCA status?
• Women get frustrated by exclusion criteria too. Very disheartening for those who feel they’ve run out of options.
• Helping Cancer Patients Navigate #ClinicalTrials #gyncsm #ovariancancer Via ⁦@biospace⁩ https://www.biospace.com/article/helping-cancer-patients-navigate-clinical-trials/

2. It still seems that minority pops are overlooked in clinical trials, yet the data from these groups is crucial. Minority participation still stand at around 4%, well below the national averages. Why is this? 

• That's a great question. My cancer center just opened a Health Disparities center to try to understand and increase numbers of minorities who participate. As for why - I'll start with Language barriers, travel, child care,
• Black and Hispanic women are definitely under-accrued to clinical trials in ovarian cancer but this disparity is less pronounced in endometrial and cervical cancer
• That question has been explored quite a bit. There are a number of findings. The first is language barriers make it difficult to explain studies to nonEnglish speaking people. The second are cultural barriers formed by mistrust of The medical establishment.
• Those are some real issues, especially the issue of trust. But that places a lot of the ownership on the populations, not the industry. I'd include the fact that clinical trial orgs often use the old pipelines for trials & are not inclusive and they need to be.
• Enrollment of Racial Minorities in Clinical Trials: Old Problem Assumes New Urgency in the Age of Immunotherapy | American Society of Clinical Oncology Educational Book https://ascopubs.org/doi/full/10.1200/EDBK_100021#_i6

3. Surgery for Recurrence Ovarian Cancer Does Not Improve Survival    https://www.cancer.gov/news-events/cancer-currents-blog/2019/ovarian-cancer-surgery-recurrent-survival

• I’m still assuming that additional surgery is good for women who don’t respond well to chemo..?
• That's disheartening. I'll have to read it later. I wonder if that conclusion applies to all cell types and grades of ovca.

4. Research and ovarian cancer advocate @Stigetta was involved in this paper that just came out: A Priorities Assessment Tool to Support Shared Decision Making, Maximize Appointment Time, and Increase Patient Satisfaction in Women With Ovarian Cancer

https://ascopubs.org/doi/abs/10.1200/JOP.19.00455?utm_source=Email&utm_medium=Email&utm_campaign=JOP+ETOCs+9.4.19+Ongoing&email=865aa94a58f0b27b9edd2aa71d80e9a99b924971f7ce90316a0d742b2e9c9b1c&

5. Did you see this Nature article: Both fallopian tube & ovarian surface epithelium are cells-of-origin for HGSOC https://www.nature.com/articles/s41467-019-13116-2#Sec10

Please join us in January - one week later than usual - on Wednesday Jan 15, 2020 for our chat about “Goals of Care throughout the Cancer Experience” . 

Happy Holidays everyone! 

Dee

#gyncsm Co-founder 

Resource links shared, but not included above:

Coping with the holidays while in treatment for cancer - http://globeathon.com/blog/holidays-past/

Social Media Hashtags - https://www.sgo.org/social-media/social-media-hashtags/

Summaries of all #gyncsm chats - http://gyncsm.blogspot.com/p/chat-topics.html

Patient Empowerment Network Clinical Trial Resource Pages - https://powerfulpatients.org/hub/generalhealthinfo/general-health-information-treatment-clinicaltrials/

The generalizability of NCI-sponsored clinical trials accrual among women with gynecologic malignancies - https://www.gynecologiconcology-online.net/article/S0090-8258(16)31432-9/abstract

Why Are Uterine Cancer Rates Rising So Drastically in Black Women? - https://www.self.com/story/uterine-cancer-black-women

#gyncsm Survey results and Gyn Cancer Open Mic Chat - Dec 11,2019

We will end our chat year with a discussion of the results of the #gyncsm Community Survey we conducted in September and also allow our community to ask questions.

Some of the information we will provide about the survey is:

• Who responded to our survey?
• How did respondents interact in our community?
• What was learned and how was what was learned use?
• What were the most important chat topics we have discussed over the past few years?
• How can we have a better community? 

For the remainder of the chat hour we will hand the "mic" over to you to bring up topics of interest. This is our 4th "open mic" chat and we always enjoy the chance to bounce around where the topics take us. You may feel free to ask us about future #gyncsm chat topics (we are working on our 2020 schedule), about something you heard in the news that you found interesting or are curious about, about what questions others ask their nurse or doctor, or anything related to this community and the cancers that impact it. If we don't have an answer, we will happily research it for you and get back to you. We hope sharing your experiences and questions may help others in their experience.

We hope you can join us on Wednesday, December 11, 2019 at 9pm ET. 

See you then,

Dee 

Co-Founder #gyncsm 

What's on your Mind? #gyncsm Open Mic Night -July 12, 2017

We didn't have a set series of topic questions for this month's chat but rather allowed our participants to share what was on their minds. We had nineteen participants and over 1.4M impressions. You may find more analytics from Symplur here.

The hour's discussion revolved around these main areas:

Emotional support of women after treatment

• I'm struggling in post treatment life. Unknowns, grief, plus effects from chemo, rads. :/
• Post-treatment is really tough for so many people. It's tough to go from the intensity of treatment to the uncertainty of after. 

A petition to make July Sarcoma Awareness Month which led to a discussion of - What is sarcoma? Which are gynecologic?

• Via @suziesiegel Sarcoma is a cancer of connective tissues. The main types of gyn sarcoma are leiomyosarcoma ,low- & high-grade endometrial stromal sarcoma, & undifferentiated uterine sarcoma. Some include carcinosarcoma
• Risk factors include exposure to radiation & use of Tamoxifen, plus genetic issues such as Li-Fraumeni Syndrome

Educating the public about the importance of HPV vaccination

• Caleb's Feet Foundation http://www.calebsfeetfoundation.org/ brings information about cervical cancer and the HPV vaccination to the community. 
• studies show pediatricians have a huge influence on whether kids get vaccinated - parents do listen to doc rec
• good to focus on doc's and then community influencers - churches, centers
• The @GlobalGenes site has some amazing free toolkits for health advocates. Can also check out blogs from @JBBC re: health marketing 
• HPV vaccination could reduce global deaths from #cervicalcancer by as much as two-thirds

Support for women cancer researchers 

• I really want to (1 day) discuss the lack of funding 4 female researchers, tasked w/ post BrCa Dx research
• Issues affecting women's health still does receive equitable share in research dollars. It's time that changes
• Awarding rates 4 female applicants (14.9%) are systematically lower than those for male applicants (17.7%) 

The science behind the connection between genetic mutations (other than BRCA) and how they may raise the risk of  Breast, Ovarian Color Cancer 

• I'm in a FB group for CHEK2 and many previvors reporting getting ovaries out though science isn't there yet on that.
• CHEK2 is the name of a gene...when there is an inherited change (mutation) in CHEK2 = some increased risk for specific cancers
• Risks to removing ovaries in these young women-->early menopause w/o known cancer risk reduction benefit

There is now more detail about Lynch-syndrome related ovarian cancer risk (also shows how little we know)! #gyncsm #gencsm pic.twitter.com/CUS0Vy4YoI

— Erica Bednar (@EMBOSU) July 13, 2017

You may find the complete chat transcript here.

Please scroll down for Resources mentioned during the chat.

Remember you can always join our discussion on the Smart Patients Platform. (https://www.smartpatients.com/partners/gyncsm )

Be sure to join us next month on Wednesday August 9, 2017 at 9pm ET | 8pmCT | 6pmPT  as we discuss "You never heard of Primary Peritoneal Cancer or GTDisease?".

Remember to tweet things of interest to our community by using the #gyncsm hashtag.

See you in August!

Dee
#gyncsm Co-founder

RESOURCES:

Petition to make July Sarcoma Awareness Month
https://petitions.whitehouse.gov/petition/officially-designate-july-sarcoma-awareness-month

Calebs Feet Foundation
http://www.calebsfeetfoundation.org/

Magenta Study Genetic testing study at MD Anderson
https://magenta.mdanderson.org/magenta_mobile/index.html

Sex Bias in Surgical Research
http://www.physiciansweekly.com/sex-bias-in-surgical-research/

@nccn guidelines for "Hereditary Colorectal Cancer"
https://www.nccn.org/about/news/ebulletin/ebulletindetail.aspx?ebulletinid=294

What's on your Mind? #gyncsm Open Mic Night

This month we are opening the discussion to topics our participants want to discuss.

What is on your mind?

Are you considering a PARP and want to know more? 
Are you interesting in taking part in a clinical trial but have questions? 
Do you want to know if others are experiencing Quality of Life (QOL) issues like you are?
Do you have questions about seeing a Genetic Counselor for genetic testing?  
Do you want to discuss the results of the Our Way Forward Survey? 
Do you want to discuss how to communicate with your health care team?
Did you see the latest research on obesity and ovarian cancer and wonder if it applies to you? 
If you are a health care provider, do you wonder how much information your patient wants to hear about their condition?

Join us on July 12th at 9pmET | 8pmCT | 6pmPT and bring your thoughts, questions and comments for our third "Open Mic" #gyncsm session.


Dee
Co-Founder #gyncsm Chat

Oct 14,2015 Open Mic Chat

This Open Mic chat focused on topics of interest to our participants. It was great to see our regulars and some new faces. It was a lively hour with 35 participants and 406 tweets in the hour. You may find the transcript here and additional analytics here.

The initial question was about returning to work.

I'm going back to work for the first time in 6 weeks on Monday. Worried about energy/endurance. Advice? #gyncsm

— Elizabeth Anderson (@MathTeacherEA) October 15, 2015

Advice included recruiting students to help, drink lots of water, take breaks, eat high energy snacks such as nuts, raisins and to take a nap when she got home.

Then a good source on immuno-oncology was shared along with some comments on Lynch Syndrome.

Want "basics on up" re immuno-oncology, new drugs Opdivo and Keytruda, trials? Try new the new IKCC website http://t.co/Wkqt2YIXrr #gyncsm

— Robin Martinez (@RobinSmrtPtient) October 15, 2015

@RobinSmrtPtient Very true - tumors w MSI (microsatellite instability) respond to PD-1 inhibitors. MSI is common in #Lynch Syndrome #gyncsm

— Shannon Westin (@ShannonWestin) October 15, 2015

Lynch syndrome information and resources via @shewithlynch http://t.co/DyrCslkfGf She also blogs for @cure_magazine #gyncsm

— Christina Lizaso (@btrfly12) October 15, 2015

The discussion then turned to IP chemotherapy for ovarian cancer. Studies show IP chemotherapy provides an improved overall survival compared to IV chemotherapy.

The Underutilization of Intraperitoneal Chemotherapy for #OvarianCancer : Why? #gyncsm @Medscape http://t.co/nct6PzLDBg

— Lisa M Guzzardi, RN (@LguzzardiM) October 15, 2015

@LguzzardiM @btrfly12 Centers need to get the training to feel comfortable/competent/safe giving the IP treatment #gyncsm

— Shannon Westin (@ShannonWestin) October 15, 2015

The recent report on the safety of Hormone Replacement Therapy for epithelial ovarian cancer survivors was shared and discussed.

Adjuvant Hormonal Therapy Is Safe in Epithelial #OvarianCancer #gyncsm Via @CancerTherAdvsr http://t.co/VtoZMbp4Zk

— Lisa M Guzzardi, RN (@LguzzardiM) October 15, 2015

Next the topic of annual pelvic exams and a possible U.S. Preventive Services Task Force recommendation was brought up.

The debate on whether we need annual pelvic exams is in the news again and gov report looming http://t.co/IHLM2Xg2l9 - thoughts? #gyncsm

— Christina Lizaso (@btrfly12) October 15, 2015

ACP says no need for annual if no symptoms, history. ACOG came back with caveats, feels up to pt and dr to decide. #gyncsm

— Christina Lizaso (@btrfly12) October 15, 2015

We also discussed screening, family history, gyn awareness month activities, a timeline chart of long-term side effects post-chemo & radiation, risk of ovarian cancer in young women, surgical menopause and which supplements are recommended after BSO(bilateral salpingo-oophorectomy). 

 A link to a Brief survey for Cancer Survivors: How do you prefer to receive test results?buff.ly/1VTe1tm was also shared.

Remember you can continue our conversation on Smart Patients (https://www.smartpatients.com/gyncsm)

We look forward to seeing you again next month on November 11, 2015 at 9pmE/8pmC/6pmP as we talk about Exercise and Nutrition. We are lining up some guests to share their expertise so the hour should be filled with helpful information. See you then!

Dee
Co-Moderator

Resources

IKCC website 10forio.com Understanding Immuno-oncology for Kidney Cancer

The Underutilization of Intraperitoneal Chemotherapy for #OvarianCancer medscape.com/viewarticle/85…

Adjuvant Hormonal Therapy Is Safe in Epithelial Ovarian Cancer cancertherapyadvisor.com/gynecologic-ca…

Do Women Need an Annual Pelvic Exam pbs.org/newshour/rundo…

 Book: 100 Questions & Answers About Ovarian Cancer by @drdonsdizon @womenofteal  jblearning.com/catalog/978128…

@NCICancerStats #OvarianCancer fact sheet: go.usa.gov/yUpP

What’s an Ashkenazi woman to do? Jewish Telegraphic Agency jta.org/2015/10/14/lif…

Open Mic - October 14, 2015 Chat

This month we are opening the discussion to topics our participants want to discuss.

What topics do you want to discuss?

What did you do in September to raise awareness or funds for gynecologic cancer research?
What it is like taking part in a clinical trial?
Quality of Life (QOL) issues?
The latest research on HRT and ovarian cancer?
Beta Blockers and ovarian cancer?
Why your son should get an HPV vaccine?
Has the pink ribbon gone too far?

Join us at 9pmET | 8pmCT | 6pmPT and bring your thoughts, questions and comments. See you on the 14th.


Dee
Co-Founder #gyncsm Chat

Open Mic Chat : December 11, 2013

Thank you to our moderators, survivors, caregivers, health care providers and "lurkers" who participated in our Open Mic chat. We covered a number of interesting topics including support groups, fertility discussions, when to see your PCP vs your oncologist, survivorship, etc. Here is a link to the transcript from tonight's  #gyncsm chat.

Next month's chat topic ( 1/8/14 at 9pm EST) is cervical cancer.

Resources shared during the chat:

Pancreatic Cancer Action Network –Vision of progress

http://www.pancan.org/section_about/vision_of_progress/

Woman to Woman

http://nyp.org/services/oncology/woman-to-woman-support-group.html

Stupid Cancer

http://stupidcancer.org/

Bright Pink

http://www.brightpink.org/

Sharsheret

http://sharsheret.org/

Cancer Schmancer

http://www.cancerschmancer.org/

Ovarian Cancer Discovery Deepens Knowledge of Survival Outcomes

http://www.sciencedaily.com/releases/2013/12/131209105230.htm?utm_content=bufferdfc96&utm_source=buffer&utm_medium=twitter&utm_campaign=Buffer#.UqZg3FkFCAQ.twitter

Ovarian Cancer Survivor Jill Pall Continues Fundraising Efforts to Help Kicking For The Dream Fight Ovarian Cancer

http://www.prweb.com/releases/2013/11/prweb11356230.htm

Tweet handles shared  

@ImermanAngels

@teaminspire

@CancerHopeNet

We at #gyncsm wish you all a Happy and Health Holiday. 

Dee

Co-moderator