Showing posts with label cervical cancer. Show all posts
Showing posts with label cervical cancer. Show all posts

Wednesday, December 11, 2024

December 11, 2024 Final #gyncsm chat - Advances in Cervical Cancer Treatment

We had sixteen participants join us for our final #gyncsm chat. We were pleased to have our community's long term supporter, Cervivor (@IamCervivor) as our guest. Thank you Morgan Newman for representing Cervivor. You may find the chat transcript here and analytics here. 

        T1: Before we dive into treatment advancements, let's cover some important                         #cervicalcancer basics: 
What are the current cervical cancer screening guidelines?

Did you know? New draft guidelines were published by the USPSTF this week. Check them out here:  https://www.uspreventiveservicestaskforce.org/uspstf/sites/default/files/file/supporting_documents/cervical-cancer-screening-draft-rec-bulletin_0.pdf. Stay informed and stay empowered!


Know your options! Some individuals may need more frequent screening or different tests. Talk to your healthcare provider about your individual needs!
 
What are the recommendations for receiving the HPV vaccine?

Get vaccinated! The HPV vaccine is recommended for all kids by age 11 or 12 (even as early as age 9), but adults up to 45 can also get vaccinated! 
Let's prevent #cervicalcancer together! 

T2: What are some of the recent advances in the treatment of #cervicalcancer in the areas of immunotherapy, targeted therapy, radiation therapy, etc?

Breakthroughs in #cervicalcancer treatment: Concurrent immunotherapy and chemoradiation improves survival for stage III-IVA disease

Targeted therapy is also making waves! New meds are targeting specific cancer cells, reducing side effects. Radiation therapy advances include more precise targeting and fewer sessions. #Cervivor #TargetedTherapy #RadiationTherapy

But that's not all! Other advances include minimally invasive surgeries, robotic surgeries, and new chemo combos. Treatment is always evolving and we are staying hopeful! #Cervivor #CervicalCancer

T3: Have there been advancements in the treatment of recurrent #cervicalcancer?

Recurrent #cervicalcancer treatment has new options! Immunotherapy, targeted therapy, and precision medicine are offering new hope. 

Clinical trials are crucial and often extend patients' lives! They offer access to the latest cutting-edge treatments. To patients on the fence, please ask your doctor about trials! #ClinicalTrials

But treatment isn't just about meds! Palliative care, pain management, and emotional support are vital to quality of life. Discussions on this have been becoming more visible which is important!

T4: How can #cervicalcancer patients stay up-to-date on the latest treatments and what is the best way to find a clinical trial? 

Our advice is to follow reputable sources like @NIH for the latest on #cervicalcancer treatments and clinical trials. Start a conversation with your care team to decide what's best for you! 

Did you know? clinicaltrials.gov is a comprehensive database of clinical trials for #cervicalcancer. Search by location, condition, or intervention to find trials near you.

Stay ahead of the curve! Join our community to connect with other #cervicalcancer patients, survivors, advocates, and experts. Share knowledge, resources, and support. #Cervivor

T5: What are the WHO initiatives regarding #cervicalcancer and global efforts to reduce disparities and eradicate cervical cancer? What can we do locally to reduce disparities?

The 73rd World Health Assembly adopted a global strategy to eliminate #cervicalcancer as a public health problem by 2030! 
 Goals: 
90% of girls vaccinated against HPV by 15 
70% of women screened by 35 & 45 
90% of women with pre-cancer/cancer treated

Did you know?
@WHO's Cervical Cancer Elimination Initiative focuses on improving access to life-saving services in low- and middle-income countries. Support global efforts to reduce disparities!

Local action = global impact! Join us in advocating for increased access to #cervicalcancer screening, treatment, and support in your community. Together, we can eliminate cervical cancer disparities.

T6: Please share #cervicalcancer resources that you have found helpful.

For some basics see the #gyncsm blog Resources section gyncsm.blogspot.com/p/resources_9.

Empowered patients, empower their communities! Our website offers expert-approved info on #cervicalcancer diagnosis, treatment, and survivorship. Explore and share with your networks: cervivor.org.  Connect with others who understand! Our online community and support groups offer a safe space to share experiences, ask questions, and find support. Join us: cervivor.org/support/Follow our social media for personal stories, expert insights, and updates on #cervicalcancer support programming, events, and advocacy efforts: linktr.ee/Cervivor.  JOIN US: at our upcoming Cervical Cancer Summit: bit.ly/3YQm8BB. #Cervivor #GYNCSM


 

We ended our chat with thank yous:  

Thank you Christina @btrfly12 for being my partner. You are the absolute best chat moderator and community partner I could have asked for. 

We want to thank our current and former moderators: 
@ShannonWestin @NitaKarnikLee @DrBeckerSchutte and @journeycancer ( 2013-2020) Don S. Dizon, MD (2013-2015) @DrMarkham (2013-2018) @temkins (2018- 2022) 

Then #gyncsm community is grateful for the strong support of @subatomicdoc ,  @SGO_org @smart_patients and tonight’s guests Cervivor @iamcervivor

We can’t forget the social media gurus who we joined with to study hashtag communities including @subatomicdoc @pfanderson @audvin @mtmdphd Dr Deanna Attai and others. See studies and publications involving cancer hashtag communities: gyncsm.blogspot.com/p/publications

Thank you Teresa Hagan Thomas,  @UPMC @HeidiSDonovan @LHavrilesky , & Lauren Cooper Hand for working with us and publishing the studies on the needs of women w/ ovarian cancer, the needs of caregivers and PARP decision making gyncsm.blogspot.com/p/publications

We appreciate the numerous guests - individuals and organizations - who have shared their expertise on gyn cancers through the years. #gyncsm x.com/i/lists/197793

Thank you to the numerous #gyncsm patients, survivors, caregivers that have joined our chats the past 11 years. You are why we started this community. We hope we have provided a safe place to share, ask questions and learn.

Thanks to the countless gyn, med, & rad oncs, nurses, social workers, therapists and other health care providers who participated in the chats sharing knowledge. We appreciate the info you shared from @ASCO @SGO_org and other annual meetings.

A special shout out to all the researchers who have shared their published journal articles , answered questions and listened to the patients/survivors in our community.

You can continue discussing Cervical Cancer and other gyn cancers by joining Smart Patients at www.smartpatients.com/partners/gyncsm . Our blog  gyncsm.blogspot.com will remain open so that our community can have access to its resources and chat summaries. Dee will continue to share information using the #gyncsm hashtag and @gyncsm handle. 

Wishing wellness and safety for all. It has been an honor and a privilege to be in community with all our participants and supporters. 

Dee and Christina
Co-founder and Co-moderators #gyncsm chat 


Wednesday, December 4, 2024

FINAL #gyncsm chat December 11, 2024 - Cervical Cancer Advancements in Treatment

The #gyncsm community started in 2013 after both Christina and I took part in a #bcsm chat on dealing with recurrence. 

After eleven years, we have made the difficult decision to cease hosting the #gyncsm chat. Our last chat will be on Wednesday, December 11, 2024 at 8pmET with guest and long-time supporter, Cervivor (@IamCervivor).

Our decision is based on a number of reasons including the change in the X/Twitter platform since we held our first chat in 2013, the reduced number of chat participants - especially patients and survivors over the past year (see survey summary) - and the migration of health care providers, organizations, and cancer advocates like the Advocates for Collaborative Education (ACE) to alternate platforms. Dee will continue to use the #gyncsm hashtag on X. We hope that others will continue to use the #gyncsm hashtag to share research studies, research results, highlights from oncology meetings, and to connect with others. We will leave the @gyncsm profile page open on X but will not be updating it. 

We want to take this time to thank our current and former healthcare moderators:
Dr. Shannon Westin (2015-2024)
Dr. Nita Lee (2024)
Dr. Ann Becker-Schutte (2013-2024)
Dr. Sarah M. Temkin (2018-2022)
Dr. Rick Boulay (2013-2020)
Dr. Merry J. Markham (2013-2018)
Dr. Don S. Dizon (2013-2015)
 
We are also grateful for for the strong support throughout the years from Dr. Matthew Katz, the Society of Gynecologic Oncology/Foundation for Women's Cancers, Smart Patients, and Cervivor.

We thank the researchers including Teresa Hagan, Dr. Laura Harvelisky, and Dr. Lauren Hand who joined with us to learn about the needs of women with ovarian cancer, the needs of caregivers, and PARP decision making for patients. You can find those published articles here on our blog at http://gyncsm.blogspot.com/p/publications.html


We can’t forget to thank the social media gurus who we joined with to study cancer hashtag communities including Dr. Matthew Katz, Patricia Andersen, Audun Utengen, and Dr. Mike Thompson. Thank you! You can also find those articles here on our blog at http://gyncsm.blogspot.com/p/publications.html


We appreciate the numerous guests through the years who have shared their expertise on gynecologic cancers, as well as emotional and physical support topics. Thank you to the countless gynecologic oncologists, medical oncologists, radiation oncologists, nurses, social workers, therapists, and other health care providers who shared their knowledge and helped our community. We also appreciate the information you shared from ASCO, SGO, and other annual meetings. A shout-out to all the researchers who have shared their published journal articles, answered questions, and listened to the patients/survivors in our community


And finally we want to thank the the numerous #gyncsm patients, previvors, survivors, and caregivers that have joined our chats the past 11 years. You are why we started this community. We hope we have provided a safe place to share, ask questions, and learn.


We'll see you on December 11th for our final chat. Below are the questions that will guide our discussion:

T1: Before we dive into treatment advancements, let's cover some important #cervicalcancer basics: 
What are the current cervical cancer screening guidelines?
What are the recommendations for receiving the HPV vaccine?
T2: What are some of the recent advances in the treatment of #cervicalcancer in the areas of immunotherapy, targeted therapy, radiation therapy, etc?
T3: Have there been advancements in the treatment of recurrent #cervicalcancer?
T4: How can #cervicalcancer patients stay up-to-date on the latest treatments and what is the best way to find a clinical trial?

T5: What are the WHO initiatives regarding #cervicalcancer and global efforts to reduce disparities and eradicate cervical cancer? What can we do locally to reduce disparities?

T6: Please share #cervicalcancer resources that you have found helpful.


Dee and Christina 

Co-founders and co-moderators

Wednesday, September 13, 2023

9/13/2023 How do we #MoveTheMessage? Raising Awareness of Gyn Cancers


As we celebrated our 10th Anniversary as a Community on X/Twitter we were happy to be joined by Foundation for Women's Cancer, Cervivorand Powell-Drescher Ovarian Cancer Research Foundation to discuss how to raise awareness of gynecologic cancers.

We had 19 participants and 1.2 million impressions. You may find more analytics here and the transcript here

Here are some tweets that highlighted key points mentioned during the chat.  

T1 What are some of the things you, or your organization, do to raise awareness of GYN cancers? Are there things you've tried in expanding your reach to underserved communities? 

 


T2: What are some of the key points to share when raising awareness about #CervicalCancer? What do you wish others knew? #gyncsm #MovetheMessage 

 


T3: What are some of the key points to share when raising awareness about #UterineCancer and #EndometrialCancer? What do you wish others knew? #gyncsm #MovetheMessage 


T4: What are some of the key points to share when raising awareness about #OvarianCancer? What do you wish others knew? #gyncsm #MoveTheMessage

T5: Vaginal, vulvar, and several other gyn cancer types are rare. With fewer advocates and organizations to speak about these cancers, how can we educate more people? What is most important to know? #gyncsm #MovetheMessage

You can visit the #gyncsm community blog Resources page to find links to some of the groups and/or info for the rarer forms of gyn cancer gyncsm.blogspot.com/p/resources_9.

We'd love your feedback on these three #gyncsm community questions. Feel free to comment in the box below or on Twitter.

Question 1 : Approximately how long have you followed the #gyncsm hashtag? What has the cancer community on this platform meant to you?

Question 2: How are you feeling about the cancer community on this platform now? Do you have back-up plans if/when this platform is no longer a good fit for you?

 Question 3: What chat topics have you found most helpful? What topics would you like #gyncsm to cover in future chats? 


Note there is no #gyncsm chat in October. Stay tuned for information about our next chat in November on Wednesday, November 8th at 8pm ET. 

Thanks again to all our health moderators and supporters through the years.

Dee and Christina 

Wednesday, March 9, 2022

March 9, 2022 Cervical Cancer Updates and Global Impact

The #gyncsm community was pleased to have Morgan Newman, MSW, Community Engagement Liaison for Cervivor (@IamCervivor) join us to chat about Cervical Cancer Updates and Global Impact. We had eighteen participants join us for the informative discussion.

Below are samples of the responses to our chat topic questions. You may view the complete transcript here. You may also find links to resources at the end of the post.

T1: What are the current HPV vaccination guidelines? What have been some of the main changes and how do these affect different age groups?
  • T1: HPV vaccine works best when given before any exposure to HPV. Currently recommended are: - 2 doses for Age 9-14 (routinely 11-12) - 3 doses for Age 15-26 - Shared-Decision-Making w/ patient on whether to vaccinate Age 27-46. More via @CDCgov: cdc.gov/vaccines/vpd/h…
  • A1: You'll see the ages have changed recently for the HPV vaccine to start early at 9 and 10. We love this resource from @HPVRoundtable that maps it out: 


T2: What are the current cervical cancer screening guidelines? What are some concerns around the updates?
T3: What are some of the recent treatment advances for cervical cancer? How can patients stay up-to-date and also learn about clinical trials?
  • A3: There have been more options for #clinicaltrials for metastatic/recurrent #cervicalcancer being approved: immunotherapy treatments, including activated T-cells (that can recognize and kill cancer cells), therapeutic vaccines, and immune checkpoint inhibitors. 
  •  The latest #CervicalCancer Treatment guidelines (Jan2022) from @NCCN are available: https://t.co/d7OdABRFLg NCCN Guidelines are a good place to start so you can ask questions about your doctor's plan for your care and discuss any variations from the guidelines.
  • A3: We know finding information on #clinicaltrials can be daunting so we put this together: https://t.co/aAid1v4Luw. We are also fortunate to have great community partners like doctors at @NIH volunteering their time to navigate options and organizations like @Ancora_AI
  • T3: Patient groups like @IamCervivor @StopHPVCancer and others can help with information on the latest #cervicalcancer treatments and provide guidance of finding clinical trials.
  • A3: immunotherapy in cervical cancer nejm.org/doi/full/10.10…
  • @ASCO guidelines for management of invasive Cervical cancer were updated in 2021 https://t.co/Yd1l5bRfGO #gyncsm "Clinicians may offer upfront pembrolizumab and chemotherapy with or without bevacizumab"
  • A3: Ask your healthcare team about clinical trials. Get a second opinion even you like your healthcare team and want to stay with them. There is always something to learn. 
T4: How has HPV vaccination and cervical cancer screening and treatment been impacted by the pandemic?
T5: What is the research showing about disparities in prevention, screening, diagnosis and treatment for cervical cancer? 
T6: Yesterday was #InternationalWomensDay. What new initiatives are WHO and others bringing to global efforts to reduce disparities and eradicate cervical cancer?
  • @WHO is committed to eliminating #cervicalcancer by attaining: *90% of girls fully vaccinated by 15 *70% of women screened using a high-performance test by the age of 35 (again by 45) *90% of women with pre-cancer treated & 90% of women with invasive cancer managed 
  • T6: Cervical cancer presents an amazing opportunity because we actually have the science to, in many cases, prevent it plus catch and treat it in the pre-cancerous stage.
  • T6: In 2018, the WHO Director-General announced a global call for action to eliminate cervical cancer and in 2020 the World Health Assembly adopted the Global Strategy for cervical cancer elimination https://www.who.int/initiatives/cervical-cancer-elimination-initiative
  • We were shining a light on cervical cancer with @WHO as they formally launched a global strategy to eliminate #cervicalcancer. We continue to advocate in solidarity by sharing our stories: https://www.youtube.com/watch?v=0HPcWZSSrCo . #GYNCSM #GlowTeal
  • @ASCO has put out and recently updated Resource-Stratified Guidelines for the treatment of cervical cancer - with tiers to match guidelines with available resources in different areas.

    We will not be chatting in April but we look forward to having you join us on Wednesday, May 11, 2022 for out 2nd Annual Digital Health Fair. If your organization would like to join us please DM us on Twitter (@gyncsm) or email us at gyncsm@gmail.com .

    Thank you to all those who shared info about our chat. 

    Happy Spring,

    Dee and Christina

    ADDITIONAL RESOURCES

    Think You’re Too Old to Get the HPV Vaccine to Prevent Cancer? Maybe Not 

    Nearly One-in-Five Women Diagnosed with Cervical Cancer Over Age 65

    Cervical Cancer Treatment in Rwanda

    Advancing NIH Research on the Health of Women 2021 Conference  (Click on presentation tab to access videos) 

    Previous decline in cervical cancer incidence begins to reverse in low-income U.S. counties and stall in high-income counties