Showing posts with label social media. Show all posts
Showing posts with label social media. Show all posts

Tuesday, December 10, 2024

Eleven Years of Supporting and Educating the Gynecologic Cancer Community

In 2013, Christina Lizaso and I founded the #gyncsm chat and community on Twitter/ X. This year, eleven years later, we made the difficult decision to cease hosting the #gyncsm chat. You can read more about our decision on the #gyncsm blog.  Our last chat will be Wednesday, December 11, 2024 at 8pm ET with special guest and long time #gyncsm chat supporter, Cervivor. 

 We have done so much - in addition to changing our logo through the years.


We held a total of 108 chats (including this December chat).  We covered many topics including risk factors, caregiving, parenting, working while being a cancer patient, personalized medicine, treatment side effects, how to work and communicate with your health care team and survivorship.  These chats were possible because of the many individuals, organizations and groups that supported us. 

We had support from gynecologic oncologists who volunteered their time to be our  health care moderators and others who joined the chat as guests sharing their expertise. We had researchers join us to talk about their research and new treatments available to women diagnosed with gynecologic cancers. We chatted multiple times about every gynecologic cancer including the more rare types such as vulvar, sarcomas, GTD and primary peritoneal cancer. We held two digital health fairs and invited cancer support organizations to share the resources they provide to cancer patients and their caregivers. We've talked to cancer health equity experts about how to best provide cancer health care to all women. We've had chats focused on the emotional impact of a cancer diagnosis, fear of recurrence and how to talk to your children and family about your diagnosis. We've talked with genetics counselors about hereditary cancers, genetic testing and mutations. We raised awareness of pelvic health, pre-habilitation and nurse navigators. We discussed types of advocacy from research advocacy to advocating for yourself or your loved one. We talked frequently about clinical trials from the types of trials to how to search for and enroll in a trial. Annually, we shared the latest research news from the ASCO and SGO annual meetings. And we can't forget about the insights gynecologic cancer patients provided to each other and to researchers during our chats.

Personally, I have been blessed to be part of the  #gyncsm chat. I am so grateful to have worked with Christina these past 11 years to bring support and education to the gyn cancer community. Working on the chat and sharing information has opened doors for me to expand my advocacy work. I not only meet some of the top gynecologic cancer researchers in the world but have had the opportunity to work with them. I've co-authored a book, presented at oncology meetings, and worked on SGO, ASCO and NCI committees. I also have had the opportunity to be a patient advocate on a number of clinical trials. And  I learned from the gyn cancer patients and caregivers in our community- what a courageous and motivated group. I am sad to see the chat end but so appreciate the opportunities provided to me by the chat. 

I will continue to share research information on X using the #gyncsm hashtag and our blog will remain active so that members can have access to the resources and chat transcripts. 

You can find me here and as womenofteal on X, , Facebook, Instagram, Threads and Bluesky. 

 

Dee

Every Day is a Blessing


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Wednesday, June 5, 2024

Saturday at #ASCO24 - Science, Opening Session and My Social Media Panel Presentation

Over the next few days I will share my experience at #ASCO24 , the science I learned , amazing people I spoke to and of course my presentation on social media. 

Late in the day on Friday,  I finally got to McCormick Place. The traffic from the airport was dreadful but I arrived in time to pick up my badge from the Faculty Lounge. Then I headed to my favorite sushi place - Nui Sushi for dinner.

Rapid Oral Abstract Session Highlights. (I missed some sessions as I had scheduled a time to practice my presentation. )

Ovarian Cancer: AXL expression can be used as a biomarker in OC. Those with high AXL expression had improved PFS and OS when treated with Bateraxcept in combo with taxol.

Ovarian Cancer: Use of suvemcitug, an anti-VEGF drug with chemo,  met PFS goal 5.49 months vs placebo at 2.73 months.

Ovarian , Fallopian, Peritoneal Cancers: Oral cyclophosphamide can be used together- Objective response rate 40%

President's Speech and Invited Speakers

Dr Lynn Schuchter,President of ASCO, inspiring speech.  

Jonathan Carlson, Microsoft Health Futures, spoke on AI use in medicine

Abraham Verghese , Stanford spoke next relating to the meeting theme Art and Science

Clinical Science Symposium Novel combinations across the gyn cancer spectrum

Ovarian Cancer combinations:

Cervical Cancer mTOR inhibitors

Ovarian Cancer - overcoming PARP resistance , HRD status did not impact response

A review of combos:

Endometrial cancers CTK4 inhibitors 

Future Endometrial Cancer work

I finished the day participating in a panel with Dr Gil Morgan and Dr Gil Lopez  on Harnessing the Power of Social Media. What an honor! Below are a few tweets from the audience. Dr Morgan spoke on using social media to improve global oncology and the The OncoAlert Consortium. Dr Lopez spoke on using social media to advance research and professional development. I spoke on social media to educate patients with cancer and clinicians.


Check back to read posts highlighting Sunday's Session and the connections I made at ASCO with researchers, clinicians and other advocates. 

Dee

Every Day is a Blessing!

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Friday, May 24, 2024

Gynecologic Cancer Sessions at #ASCO24

 

From May 31st to June 4th the ASCO Annual Meeting will be held in Chicago. The theme this year is The Art and Science of Cancer Care: From Comfort to Cure. This meeting brings to McCormick Place more than 30,000 oncologists, researchers, allied science professionals and patient advocates from around the world.

I will be attending in person and posting/tweeting to X from various sessions using the #gyncsm and #ASCO24 hashtags.

The complete program may be found at  https://s3.amazonaws.com/files.oncologymeetings.org/prod/s3fs-public/2024-05/AM24-Program.pdf )

Below  is a list of the Gynecologic Cancer sessions ( Scientific & Education).

Saturday June 1, 2024 
8am Rapid Oral Abstract Session  E-451   
I  can't wait to hear more about:
Abstract 5518: Relationship of cancer stem cell
functional assay and objective response rate of patients
with recurrent platinum-resistant ovarian cancer in a
randomized trial.
Abstract 5520: Secondary cytoreduction followed by
chemotherapy versus chemotherapy alone in platinum-
sensitive relapsed ovarian cancer (SOC-1): A final overall
survival analysis of a multicenter, open-label, randomized,
phase 3 trial.


1:15pm Clinical Science Symposium -  Stronger Together: Novel Combinations Across the
Gynecologic Cancer Spectrum , E-451 
I  can't wait to hear more about:
Abstract 5509, A phase 1/2 study of the TORC1/2 inhibitor onatasertib combined with toripalimab in patient with advanced solid tumors: Cervical cancer cohort.
Abstract 5510, Combination ATR and PARP Inhibitor(CAPRI): A phase 2 study of ceralasertib plus olaparib in patients with recurrent, platinum-sensitive epithelial
ovarian cancer (cohort A).
Abstract 5511, A phase II study of fulvestrant and abemaciclib in hormone receptor positive advanced or
recurrent endometrial cancer.


Sunday June 2, 2024 
8:00am Oral Abstracts Hall D-2
 I  can't wait to hear more about:
Abstract LBA5500: Final results of BrUOG 354: A
randomized phase II trial of nivolumab alone or in
combination with ipilimumab for people with ovarian and
other extra-renal clear cell carcinomas.
Abstract LBA5501: Atezolizumab versus placebo in
combination with bevacizumab and non-platinum-based
chemotherapy in recurrent ovarian cancer: Final overall
and progression-free survival results from the AGO-OVAR
2.29/ENGOT-ov34 study.
Abstract 5502: Vibostolimab coformulated with
pembrolizumab (vibo/pembro) for previously treated
advanced mismatch repair–deficient (dMMR) endometrial
cancer: Results from cohort B1 of the phase 2
KEYVIBE-005 study.
Abstract 5503: Trends in phase 3 gynecological
clinical trials of targeted therapies: Study oversight and
pharmaceutical involvement in the past 12 years.
Abstract 5507: Endometrial cancer and obesity trends in
the United States in the 21st century.
First Author: Alex Andrea Francoeur, MD
 
Case Based Panel Optimizing the Therapy Sequence in High-risk Endometrial Cancer - E451a (11:30am -12:30pm CT  )  
Molecular analysis, patient guidance and clinical trial perspective for Endometrial cancer will be discussed.
 
Education Session - Exploring the Uncommon: What's New in Rare Gyn Cancers  
Low-Grade Serous Ovarian Cancer, Melanoma of the Gynecologic Tract, and Neuroendocrine Gynecologic Cancer will be discussed. 

Monday June 3 ,2024
9am Poster Session Hall A 
Posters by Topic
Biologic Correlates: Board(s) 392-396
Cervical Cancer: Board(s) 397-413, 492a-493b
Ovarian Cancer: Board(s) 414-458, 494a-500b
Uterine Cancer: Board(s) 459-488, 501a-503a
Other Gynecologic Cancer: Board(s) 489-491, 503b

Poster sessions provide the opportunity to speak directly to researchers about their research results and to learn about early phase research.  With well over 100 posters in the gyn cancer category,  I will concentrate on ovarian cancer posters. Here are a few that piqued my interest.
 
Abstract TPS5635: A randomized, multicenter, open-
label phase III trial of hyperthermic intraperitoneal
chemotherapy in platinum-resistant recurrent ovarian
cancer (KOV-HIPEC-02). #396
Abstract 5544: Tumor-informed ctDNA as an objective
marker for postoperative residual disease in epithelial
ovarian cancer. #415
Abstract 5546: Differences in physical and emotional
distress amongst patients undergoing neoadjuvant
chemotherapy versus surgery for advanced ovarian
cancer: Patient-reported outcomes at diagnosis. #417
Abstract 5547: Use of cell-free DNA from ascites to
identify variants and tumour evolution in a cohort of
patients with advanced ovarian cancer #418
Abstract 5551: The efficacy and safety of RC88 in
patients with ovarian cancer, non-squamous-non-small-
cell lung-carcinoma and cervical cancer: Results from a
first-in-human phase 1/2  #422
Abstract 5553: Evaluation of a novel extracellular
vesicle (EV) based ovarian cancer (OC) screening test in
asymptomatic postmenopausal women #424
Abstract 5563: The BEV1L study: Do real-world
outcomes associated with the addition of bevacizumab
to first-line chemotherapy in patients with ovarian cancer
reinforce clinical trial findings? #434
Abstract 5573: Feasibility of using the handheld MasSpec
pen technology for intraoperative identification of ovarian
cancer during tumor reductive surgery. #444
Abstract 5578: Artificial intelligence to predict
homologous recombination deficiency in ovarian cancer
from whole-slide histopathological images. #449
Abstract 5585: Germline genetic profiles of women with
ovarian malignancies: A Myriad Collaborative Research
Registry study. #456
Abstract TPS5625: REJOICE-Ovarian01: A phase 2/3
study of raludotatug deruxtecan (R-DXd) in patients with
platinum-resistant ovarian cancer (OVC). #494a
Abstract TPS5635: A randomized, multicenter, open-
label phase III trial of hyperthermic intraperitoneal
chemotherapy in platinum-resistant recurrent ovarian
cancer (KOV-HIPEC-02). #499a


1:15-2:30pm  Education Session:  State of the Art in Gyn Cancer :New Drugs and Companion Diagnostics S 100a   
Immunotherapy, Anti-body drug conjugates and PARP inhibitors will be discussed

3:00-4:15 pm Educations Session: Controversies in the Surgical Management of Gyn Cancer :Balancing the Decision to Operate or Hesitate E450b 
Challenges in gynecologic cancer Surgery, minimally Invasive for fertility-sparing Treatment , and the timing of debulking surgery will be discussed.


Although not specific to gyn cancers, this session on June 3rd is another one I will try to add to my schedule or watch after the meeting.
9:45 AM-11:00 AM Education Session
Solving Decades of Drug Shortages in Oncology: What, Who,
and When?
Location: S100a 


Lastly, In addition to sharing on X presenations from the meeting I will be presenting during the Harnessing the Power of Social Media: Elevating Global Oncology Practice, Research, and Education education session on June 1, 2024 (3-4pm CT) . The topic of my presentation is Social Media as an Educational Tool for Patients and Clinicians. I am so excited that I will get to meet Drs Gil Morgan  and Gilberto Lopez, the other panelist in person . I have followed them for years on Twitter and respect the work they have done on social media.  I hope to see you in room S402!

 I look forward to taking a stroll through the Exhibit hall and  spending time in the Patient Advocate Lounge meeting with other advocates.  I want to give a special shout out to Jill Feldman, Lung Cancer Patient and Advocate on her Patient Advocate Award!   Congratulations, Jill !

If you are attending ASCO which sessions are on your "can't miss" list? 

See you in Chicago!
 
Dee
Every Day is a Blessing
 
 


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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.

 



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Saturday, January 18, 2020

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!

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Thursday, June 6, 2019

Education Sessions related to Communication at #ASCO19

I chose to attend two education sessions that dealt with communication. One Professional Development education session on Friday titled Tweets Chats and Posts: Using Social Media to Transcend Boundaries and Create Opportunities for Patients and the other a Pediatric Education session on Monday titled Navigating a New Cancer Diagnosis : Guiding Communication and Education. Below are some tweets and comments on each session

5/31/2019 Tweets Chats and Posts: Using Social Media to Transcend Boundaries and Create Opportunities for Patients 

Dr Subbiah, A Big World Made Small Using Social Media to Optimize Patient Care
I have followed Dr Subbiah on Twitter for a few years now so it was very nice to meet her in person.Dr Subbiah spoke on how to use Social Media effectively.




Dr Meisel, Using Social Media to Improve Clinical Trial Access and Opportunities
Dr Meisel mentioned how some health care providers may see social media as one more thing to do in their already busy day but went on to show the benefits of participating in social media such as recruiting for clinical trials. 
Dr Hamilton, The Metastatic Breast Cancer Project

 Dr Knoll, The Patient Perspective : Improving Patient Engagement in Clinical trials

6/3/2019 Navigating a New Cancer Diagnosis : Guiding Communication and Education

Dr Dobrozi Multidisciplinary Communication and Education Milestones Following a Cancer Diagnosis
Dr Mack Communication a New Cancer Diagnosis : From the Lense of the Patient and Caregiver


Dr Rosenberg Novel Approaches to Enhance the Educational Process and IMprove Patient Engagement

Some of the best advice to health care providers I heard at ASCO. 

Dee
Every Day is a Blessing!
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Friday, August 4, 2017

#FF follow the #HIT100

I had heard about the #HIT100 a few years ago. Each summer people in the health care social media community on Twitter are asked to nominate their peers who are active in various aspects of healthcare information technology. Some are entrepreneurs and journalists while others are researchers and physicians and policy makers yet they all share information of value with the community.

Imagine how I felt when a tweet showed up in my notifications that I was choosen along with fellow #gyncsm Twitter Community co-founder/co-moderator Christina Lisazo, as one of  2017's #HIT100. To be named along side of  Colin Hung (@Colin_Hung), Regina Holliday (@ReginaHolliday),   Marie Ennis-O'Connor ( @JBBC), Mandi Bishop (@MandiBPro) and others is a true honor. 

You can find the complete list here
http://www.emrandhipaa.com/emr-and-hipaa/2017/07/28/our-final-2017-hit100-list/


Since today is # Follow Friday I recommend that you take a look at this list and pick a few of these individuals to follow. You won't be sorry.

Dee
Every Day is a Blessing!
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Friday, June 26, 2015

Science , Communities and Life with Cancer- The 3rd Annual AstraZeneca Bloggers Summit

On June 24th,  I attended the 3rd Annual AstraZeneca Bloggers Summit.  The day gave me an opportunity to meet other bloggers and to learn about social media and topics of interest to cancer patients and survivors.

What I learned at the Summit can be separated into three areas-science, communities and life with cancer.

The Science:
Photo provided by AstraZeneca
Deborah Torgersen-Paul, PhD (Executive Medical Science Liaison, AstraZeneca) presented the Evolution of Science and Understanding Cancer. Dr Torgersen-Paul began her presentation with a discussion of how the Human Genome Project changed our understanding of cancer.  She then went on to explained the role of oncogenes, tumor suppressor genes, cell death from chemotherapy and apoptosis( a cells normal death). She described driver mutations and how small molecules (such as Parp inhibitors) are used. She also discussed immunotherapy (which I heard a lot about while at the ASCO meeting this year). Some cancers don't stimulate the immune system as well as others so if we can find ways to boost our body's immune system the better we can destroy the cancer cells.  She also described work going on in immuno-oncology in which chemotherapy and immunotherapy are given together.  Lastly, she spoke of the research into circulating tumor DNA (ctDNA) , also  called a liquid biopsy,  and its role in screening for different cancers.

 After the presentation we took a tour of the Phase 1 laboratories at MedImmune where the Summit was held.
Oncology Bloggers at the Summit had the opportunity to see the MedImmune Phase1 labs.

Our Communities:

Photo provided by AstraZeneca
Ciaran Blumenthal (@momfluential) , a social media and marketing expert provided insight into "The Story of Us: Best Practices for Growing Communities Online". We ( the oncology bloggers)  were all at the summit because we share our story with a community of followers. Ciaran began by defining a community and the differences between online and "in real life" communities. She then talked about how characters can develop the community - content creators, experts, influencers and supersharers. She stressed the importance of the Hashtag in social media. From my own experience, the #gyncsm hashtag has been important in growing and sharing information among members of the gynecologic cancer community especially between our monthly chats. She then went on to discuss online platforms - blogs, Instagram, Twitter, YouTube, Pinterest and the strategies that can be used to grow a community. She stressed how content is key!

Life with Cancer:

Photo provided by AstraZeneca
Sage Bolte PhD, director of Life With Cancer,  presented the afternoon sessions geared toward different aspects of living with cancer.

Did you know that patients should be asked their distress level at each doctor visit? Studies have shown that 50% of all cancer patients experience a high level of distress ( emotional , mental, social, spiritual) during treatment. Lung, pancreatic and brain cancer patients report the highest levels. One in four cancer patients will experience depression. It has also been found that patients with lower quality of life experience more depression. When a person has situational depression it has been found that as the stressors patients experience subside so does the depression . When clinical depression occurs medication and therapy( cognitive or behavioral) may be prescribed.

Then Dr. Bolte talked about anxiety and fear.  I could definitely relate. To this day when I have to have a CA-125 test or CT scan my anxiety level shoots through the roof.  And it was good to see some of the things I use to calm down were listed in Dr Bolte's list of things to do to deal with anxiety.
  • Stillness- prayer, mediation, allow to grieve, acknowledge ( I have a favorite mantra.)
  • Motion- exercise, journaling, etc ( I love to paint when I am  anxious.)
  • Ignore- this is ok for short periods of time ( When I learned my friend had passed last month I did choose to ignore it for a few hours. )
For the last session of the day, Dr. Bolte talked about Sexuality and Intimacy. Health care providers are as reluctant as patients to discuss the impact surgery and treatment have on the sexual life of their patients. A number of sexual challenges occur when a person has cancer:
  • Cancer itself
  • Psychological Distress
  • Cancer Therapy
  • Side Effects
  • Alterations in relationships
One of the physical problems associated with the instant menopause many women enter into after gynecologic cancer surgery or due to cancer treatment is vaginal stenosis- a narrowing of the vaginal canal. There are a number of techniques ( dialators, lubricants ) that can be used when the condition develops.

As I was listening to Dr Bolte I noticed that the key word she kept using was communication. Cancer patients / survivors should communicate with their partner, spouse, family, friends and physician so everyone is aware of what you need and don't need. I can agree with that 100%.

One of the best parts of the Summit was being able to spend time with the other bloggers. Since I follow most of the bloggers online it was wonderful meeting them in person. Below is a list of my fellow blogger's names as well as links to their blogs and twitter handles. 

Katie Brown - Lung cancer
Website/blog: www.lungevity.org & www.iamkatiebrown.com 
Twitter @LUNGevity & @brownbeansprout
 
Dian “CJ” Corneliussen-James - metastatic breast cancer
Blog http://www.metavivor.org/blog/
Twitter @METAvivor

 Katherine O'Brien - metastatic breast cancer
Website https://ihatebreastcancer.wordpress.com/
Twitter @ihatebreastcanc

Jennifer Campisano- metastatic breast cancer
Blog http://www.boobyandthebeast.com/
Twitter @Jcampisano

Alana Ray Osborne  - general cancer
Blog: http://www.powerfulpatients.org/blog/
Twitter @alanaray40

Thank you AstraZeneca and MedImmune for such an informative day!

Dee
Every Day is a Blessing!




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Wednesday, August 7, 2013

#gyncsm - A Gynecologic Cancer Community on Twitter

In January this year I wrote a post titled "New Years Aspirations" for the SGO Blog page. The post  listed what I aspired to do in 2013. One of those aspirations was to help set up and participate in a regular tweet chat for gynecologic cancer survivors. I have taken part in a number of #bcsm (breast cancer social media) chats and thought it would be helpful to have a chat for women with gynecologic cancers.

In early July, I read an ASCO Connection article, "Hashtag Folksonomy for Cancer Communities on Twitter" by Matthew S. Katz, MD.  Dr Katz, who also participates in #bcsm, was thinking along the same lines I was in January. In the article, he speaks about developing a hashtag nomenclature for building online cancer communities and for sharing information and news. I recommend reading that article and the comments provided by advocates and health care professionals to learn more. You might also be interested in reading Hashtags:High Time or Half-baked.

Over the past few days I have been a part of an interesting conversation among a number individuals 
(      ) interested in developing a community for those diagnosed with gynecologic cancers.I am excited to announce that we are moving forward with a gynecologic cancer community on Twitter.  @btrfly12 has set up a twitter account for @gyncsm and the hashtag  #gyncsm ( gynecologic cancer social media) will be used for the online community of gynecologic cancers including cervical, endometrial, ovarian, primary peritoneal uterine, vulvar, and vaginal. There is still work to do regarding moderators, topics, date, time etc. so the start date for the Tweet chat is not yet finalized. If you are on Twitter be sure to follow @gyncsm for more information.  I will post additional information on this blog also.

Social media like Twitter is wonderful for sharing experiences, news and other information but there are drawbacks. Things posted on Twitter are public so there may be women who will refrain from participating due to a lack of privacy. Also a single tweet is 140 characters so at times it may be difficult to convey a complex topic but posting links may allow sharing of this type of information. I feel in the long run that the benefits will outweigh the negatives an I look forward to the first chat.


Dee
Every Day is a Blessing!
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Tuesday, January 8, 2013

I'll be a Panelist at e-Pharma

I am very excited to have been invited to participate in the 12th Annual e-Pharma Summit in NYC as part of a panel discussion session titled " Social Media for Pharma: A Match Made in Heaven or Hell?". The panel is made up of health activists like myself who use social media to raise awareness of illnesses. We will be discussing whether or not the educational social media programs of pharmaceutical companies actually affect health outcomes. 

 The 12th annual ePharma Summit, takes place on March 4 – 6 . ePharma is attended by pharma folks and the content includes interesting case studies and  keynote presentations. This year the Summit includes insights into healthcare reform and its effect on pharma and a panel on Electronic Health Records. Industry leaders including Dan Lyons, formerly of Newsweek and Fast Company and Chris Frank of AmEx and author of Drinking from the Fire Hose: Making Smarter Decisions without Drowning in Information are among the speakers.


What’s unique about the Summit's format is its' collaborative nature . This means the better the quality and diversity of the audience, the better the conversation and more valuable the outcome for all those attending. 
If you are interested in attending please Click here to visit the website and my personal discount code for 20% off the registration rate is XP1806SPKDS . 




Dee
Every Day is a Blessing!
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