Friday, November 22, 2024

University of Washington Ovarian Cancer Research Study - CHANCES

Dr Elizabeth Swisher at the University of Washington Fred Hutch Cancer Center and her team at the Swisher Lab are currently conducting a research study titled "Clonal HemAtopoiesis iN CancEr Survivors (CHANCES)” and is seeking participants. This study will help better understand the connection between ovarian and other solid cancers, its treatments, and the development of serious secondary cancers such as AML ( acute myeloid leukemia) and MDS (myelodysplastic syndrome)This study is funded by the National Cancer Institute.  

You are eligible to participate in the study if you live in the United States, have had recurrent ovarian, fallopian tube, or peritoneal carcinoma with any treatment history OR  a history of ovarian cancer (on or off treatment) who has any of the following:  

  • Has been treated with more than 1 chemotherapy regimen (including if given for a different cancer type) or  
  • Has received at least 4 months of a PARP inhibitor or  
  • Has had low blood counts requiring referral to a hematologist for work up or  
  • Had known MDS, AML or clonal hematopoiesis  

The duration of the study is 3 years.  You will be asked to complete a short survey every 6 months and provide one or more blood samples ( at a lab of choice near you) over 3 years. You will receive a $50 gift card after completion of 6-month questionnaire.  

Visit www.swisherlab.org/chances for more information about the study, eligibility, and the scientific team behind this research.

Please direct any questions to the Swisher Lab, via email (swisherlabrc@uw.edu) or phone (206-321-6648) . 

Please share this info with others who may be interested in participating in this trial. 


Dee and Christina 

Co-founders #gyncsm 

Thursday, October 17, 2024

#gyncsm Survey 2024 Results Are In!

While the number of responses to this year's #gyncsm Survey was not as high as in 2019 (11 vs. 33),  Christina and I wanted to summarize the results and share them with the community. 

Of the eleven responses, the majority were gyn cancer patients, followed by caregivers, healthcare providers, a previvor, and cancer researcher. When asked what cancer diagnosis a patient/survivor/caregiver was dealing with the majority (6) were ovarian cancer, with one with endometrial cancer, one with vaginal cancer and one other cancer. Those who responded in the health care field represented cancer researchers, a therapist, a nurse and two in the other category. 

When asked how they found the #gyncsm chat and community, most responded that they stumbled upon it on X/Twitter while one responded they joined us from the Inspire(/OCRA) community. The eleven respondents participated in our community in the following ways: 

When asked if they visited our blog in the past year the majority of respondents read the blog post before or after the chat while others visited it to check the resources. Forty-five percent did not know we had a website/blog. 

When asked about the most important topics that we have covered in the past two years, Advocacy and Survivorship were the most popular topics while there were no choices for urogynecology . 

When asked how they used what they learned in our chats the majority shared that they advocated for themselves or their loved one, followed by recommending or using the resources we provided. The results for this question were similar to results from our 2019 community survey (see: 2020 ASCO Annual meeting survey results abstract https://meetings.asco.org/abstracts-presentations/187383). 

Suggested topic ideas for the future included:

  • Finding clinical trials in your area 
  • Cancer induced infertility
  • PTSD and fear of recurrence
  • Long term survivorship - is it Luck?
  • How close are we to a screening test 
  • Staging of disease - should it be revised
  • Mental health 

Respondents preferred quarterly meetings at 8pm on the second Wednesday of the month.  Three respondents would like to see the #gyncsm community on Facebook. 

Thank you so much to all the survey participants for taking part in this survey and for everyone's continued support and use of the #gyncsm hashtag.  

See you in December when we chat about cervical cancer. 


Dee and Christina 

Co-moderators of the #gyncsm 



Wednesday, September 11, 2024

Sept 11, 2024 : So You Want To Be An Advocate - Personal, Legislative & Research

This month we celebrated our 11th anniversary as a community and chat on X. 

Christina and I appreciate the support provided to us by patients and caregivers, our health care moderators, advocacy and medical organizations, chat guests, researchers, social workers and navigators as well as. 

We were so pleased to have representatives from GRASP and OCRA join us as we discussed various types of advocacy from personal to research. You may find our transcript here and analytics here.

Here are some highlights from chat:

T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?

  • I advocate for gyn health by using/sharing resources from OCRA, like our educational materials and support services. Education empowers us to advocate for ourselves & our loved ones. Check out our site for resources for patients & caregivers: ocrahope.org/resources-supp Advocating for your own health means being informed and proactive. Ask questions, share what matters to you, connect with knowledgeable communities, and seek second opinions when possible.
  • I try - not always successfully - to write down my main concerns and questions before each appointment so I can get the most out of the short time in the visit.
  • read up! Find research to answer potential questions, distill it to basics and ask doctors to explain it in context to the patient.
  • Empowering patients is critical in shared decision making. Each patient is different and therefore recommendations should be tailored to each patients. Simplifying terminology to help patients and families understand diagnosis and treatment is a crucial first step.

T2: What are some tips and resources for being an effective advocate for yourself or your loved ones in the healthcare system? 

  • Find the right online resources, connect with cancer organizations, and seek out others with similar diagnoses.
  • A key to being your own best advocate? Be proactive! Know your health history, ask questions & seek second opinions if needed. Resources like OCRA’s "Find a Doctor" tool can help locate gyn-oncs, specialists & treatment centers in your area: ocrahope.org/resources-supp
  • Many of the disease organizations like @ocrahope @GYNCancer @CancerDotNet
  • have Questions to Ask Your Doctor lists and other great resources. You are not alone and education helps empower. @ECANAwomen @SHARECancerSupt @ucan2020
  • having a list of questions can be very helpful to guide the discussion and make sure all of your questions are answered; having something to take notes and refer back to, inviting a friend or family/caregiver to be an extra set of ears and review is also good.
  • Patients are experts in their own bodies. If a patient or family member is concerned about a symptoms then we need to make sure those concerns are addressed. Always always always listen to the patient.
T3: What does being a "research advocate" involve? What are some of the ways people can get involved with cancer research - like grant review, clinical trials design, research dissemination, and/or conferences?
  • Being a research advocate means bringing the patient experience into the research process. Your insight is invaluable. Get involved and make your voice heard.
  • Being a research advocate involves providing patient insights into the experience of clinical trials. This can include making a trial easier to understand or improving patient feedback procedures. Connect with orgs like OCRA for opportunities: ocrahope.org/get-involved/v.
  • Online training programs can help you start your journey as a research advocate. Learn the science, but remember: YOU are the expert in your experience.
  • Want to get involved in cancer research? Start by connecting with organizations like GRASP that offer training and opportunities to collaborate with researchers
  • #gyncsm did a past chat with
  • @RANAdvocate
  • focused on Research Advocacy - here's the recap with some info and links: http://gyncsm.blogspot.com/2016/12/getting-involved-in-research-advocacy.html
  • There are multiple organizations where patient advocates can get involved in research including
  • @NRGonc You can also talk to your doctor. Patient voices & community perspectives are essential in research. Working together to improve patient outcomes and experiences.
  • Coursera offers a great program on the biology of cancer.
  • @AACR has a Scientist to Survivor Program
  • Reach out to the Advocate collaborative @AdvocateCollab advocatecollaborative.org A great group for support, education and information.
  • consider talking to your own Onc team- many GYN oncologist are involved in research and could potentially use a patient advocate on their teams! @NCIResearchCtr NCI designated Cancer centers often have community and patient research advocacy options for engagement!
T4: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?
  • OCRA is the largest charity in the world devoted to ovarian & related gynecologic research, having invested $122 million to date. Keep up with the impact, results, and major breakthroughs of this research and learn more about our grantees here: ocrahope.org/research/impac
  • There are a number of groups that share information in lay terms. @theNCI
  • has a glossary cancer.gov/publications/d. You don’t need to understand all of it. But you are the expert. 
  • I signed up for emails from @CancerNetwrk and also keep up with@ASCOPost . Their summaries of the journal articles are well written for a general audience to understand. 
  • More and more healthcare conferences do include patient advocates and can be a great experience. And organizations like @ocrahope @gyncancer @facingourrisk have conferences just for patients
  • Of course, follow the #gyncsm on X during the @ASCO @SGO_org @IGCSociety @myESMO
  • annual meetings and you will learn the latest research being presented. And it is OK to ask questions of the poster if you don't understand the research.
  • Follow gyn onc groups on social media, podcasts, conferences. There are special rates and many times there are funding sources to help patients and advocates attend conferences.
  • #gyncsm following major organizations can help pts explore research and consider opportunities for engagement at meetings @GYNCancer @SGO_org @IGCANetwork
  • Join the SGO, FWC and ASCO. These organizations are great with providing up-to-date info. Conferences are also a great way to stay informed."
  • @MedicalwatchBCMedWatch has a newsletter you can sign up for specific gyn cancers news medical.watch
T5: What are some tips when it comes to reaching out to Congress or your local legislatures about cancer research? What has shown to be effective?
  • @CancerAdvocacy just posted today about applications for their Cancer Policy & Advocacy Team (CPAT) canceradvocacy.org/get-involved/c
  • When reaching out to legislators, be clear/specific, provide personal stories and data to illustrate impact, and follow up consistently. Build relationships and participate in advocacy events, such as OCRA’s Advocacy Day. Learn more here: ocrahope.org/advocacy/becom
  • Want to be more involved year-round? OCRA’s Advocate Leaders program trains/supports advocates across the country to develop relationships w/ elected officials & fight for expanded federal resources. Applications for the 2025 cohort open Sep 25 ocrahope.org/advocacy/becom
  • @HealthUnion has a wonderful blog with many relevant topics for healthcare advocates: socialhealthnetwork.com/stories/advoca     https://socialhealthnetwork.com/guest-expert/the-evolution-of-health-advocacy
  • I have worked in politics most of my career. I have worked in a Congressional district office. Familiarize yourself with your elected officials local, state, and national. From that perspective when there is legislation that impacts cancer patients send your member a personal message explaining why you are for or against it. Make sure to mention you are a constituent. That is taken much more seriously than a petition with lists of names. There is much more you can do, but that is by far the easiest way to engage with your elected officials.

T6: For gynecologic cancers, what are the barriers in raising awareness and advocating for improvements in care? What issues do you think it's important for the #gyncsm community to advocate around? 

  • Barriers to raising awareness include lack of education & limited funding. Advocating for improved care involves addressing gaps in research & funding for gyn cancers, as well as disparities in access to quality care. Join the fight/take action ocrahope.org/advocacy/sign- #
  •  reach out to your local state legislators from your own district, find out if they have a cancer caucus #gyncsm Consider aligning with larger organizations such as @ASCO @SGO_org @ACSCAN
  • I feel like things have come a long way in terms of the stigma of "down there" cancers. That lays the foundation to spread even more education. Thanks to everyone who is using this awareness month to spread #gyncsm facts and information.
  • Spreading the word about gyn cancers during #GCAM has become easier and I love the teal ribbons but knowleddge about rarer type of gyn cancers , clear cell OC, Low Grade , Vulvar, Vaginal in the general public is still low. Education is key.
  • barriers and disparities along race, ethnicity geography and SES are along the whole continuum of care in #hpvvaccine #genetictesting #access to GYN oncologists; #Clinicaltrials
  • I think more awareness of hereditary mutations that lead to gyn cancers needs greater awareness. Impact on family - daughters AND sons is so important. #gyncsm
  • T6: Spreading information. Addressing misinformation. Discussing HPV vaccination. Evaluating post menopausal bleeding. Cervical cancer screening. Talking about signs & symptoms of cancer. Financial investments in research. We have come a long way but have a long way to go
  • #gyncsm addressing barriers, also means ensuring that there is diversity and representation in all forms of advocacy, including research advocacy. @BCancerCollab1 @KDRichardson924 is a leader in this space!  

We invite you to help us plan future chats by taking our community survey at https://forms.gle/4vABT5nt4RqbVR8x5 . The Survey is open until Sept 30, 2024. 

Remember you can continue our discussion about advocacy on @smart_patients by joining Smart Patients at https://www.smartpatients.com/partners/gyncsm .

See you in December when we are joined by Cervivor to discuss Cervical Cancer. 

Dee and Christina 

Co-moderators

Saturday, September 7, 2024

So You Want To Be An Advocate - Personal, Legislative & Research - Sept 11, 2024 Chat

This quarter, our chat occurs during Gynecologic Cancer Awareness Month (#GCAM). What better time than this to have the #gyncsm community chat about the different types of advocacy. 

We are happy that we will have representatives join us from OCRA (Ovarian Cancer Research Alliance @ocrahope) and GRASP (Guiding Researchers and Advocates to Scientific Partnerships @GRASPtweets). We will discuss how you can be an advocate for yourself, how you can advocate at the state and national level to fund research and ensure that gyn cancer patients have access to the best treatments, and how you can be a research advocate. 

Join us on Wednesday, September 11, 2024 at 8pm ET (7pm CT, 5pm PT). Below are the topic questions that will guide our chat.

T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?


T2: What are some tips and resources for being an effective advocate for yourself or your loved ones in the healthcare system? 

T3: What does being a "research advocate" involve? What are some of the ways people can get involved with cancer research - like grant review, clinical trials design, research dissemination, and/or conferences?

T4: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?

T5: What are some tips when it comes to reaching out to Congress or your local legislatures about cancer research? What has shown to be effective?

T6: For gynecologic cancers, what are the barriers in raising awareness and advocating for improvements in care? What issues do you think it's important for the #gyncsm community to advocate around? 

In addition to it being #GCAM, this month we celebrate our 11th anniversary as a community and chat. We have so many of you to thank for our success. We appreciate each of you!


Note that we will be sharing a Google Form Survey at the end of the chat, and in the summary chat blog post, so you will be able to share your thoughts and ideas about how #gyncsm can best serve patients, caregivers and health care providers. 

 

We hope to see you on Wednesday night!

Dee and Christina

Wednesday, June 12, 2024

June 12, 2024 Gyn Cancer Research News

Tonight the #gyncsm community discussed Gynecologic Cancer Research News presented at the SGO (Society of Gynecologic Oncology) and ASCO (American Society of Clinical Oncology) annual meetings. You may find our transcript here and analytics here

Highlights from our chat: 

T1: What #SGOmtg presentations/posters did you find most interesting?

  • I attended #SGOmtg virtually this year and found a large number of studies focused on endometrial cancer and immunotherapies >> Combo’s like dostarlimab + chemo in the ENGOT-EN6-NSGO/GOG-3031/RUBY Trial showed improved OS
  • One Recurrent OC study with Antibody drug conjugates (ADC)s the CDH6 directed Raludotatug deruxtecan (R-DXd) showed promising response in early studies Duration of response was 11 months #gyncsm #

T2: Which #ASCO24 studies do you think may be of most interest to patients?


  • ASCO, one Trial for recurrent OC, AGO-OVAR 2.29 using Atezolizumab showed OS atezo arm 14.2 months vs 13.0 placebo arm, No better than without atezo , AE's higher in Atezo arm too. #ASCO24 #gyncsm
  • ASCO published these notable studies for 2024 including: advanced epithelial ovarian cancer may safely avoid having their lymph nodes removed during cancer surgery without it impacting survival. https://society.asco.org/practice-patients/patient-resources/breaking-cancer-news-patients#CARACO
  • T2 or this study People vaccinated for HPV have lower chances of developing HPV-related cancers, especially head and neck cancer in men and cervical cancer in women 
T3: In the last year, have there been any practice-changing gyn cancer studies patients should know about? Combo treatment studies, immunotherapy and antibody drug conjugate studies? Rare cancer therapies?

  • Use of biomarkers to target the best therapies to treat women with gyn cancer was talked about repeatedly at SGO.> Repair Assisted Damage Detection (RADD) as a potential predictive biomarker for immunotherapy response in ovarian cancer reported on by Dr Rocconi 
  • T3 Use of ctDNA was also a topic of interest at SGO and ASCO 1 study for cervical cancer Circulating #HPV 16/18 DNA detectable with 100% sensitivity in higher stage and 50% in low stage cervical cancer & at time of recurrence

T4: What are some of the "hot topics" in gynecologic cancer research currently? Will AI play a role? 

  • AI to predict homologous recombination deficiency in OC from histopathological images. #5578 deep neural networks (DNN), can provide a rapid/ scalable solution for HRD prediction, …model could significantly enhance efficiency, reduce the turnaround time and cost” #gyncsm
  • T4 Machine learning used in a study cfDNA fragmentomics - New Classification test for endometrial ca, reported sensitive even for early stage cancer
  • more emerging data and use in ongoing trials and practice in Her2 low endometrial with trastuzumab deruxtecan
  • T4 It was good to see research for low grade serous OC treatments: MAPK assoc tumors better outcomes. Endocrine treatment studies, MEk inhibitors and CDK 4/6 inhibitors being researched. #gyncsm
T5: Once again, cancer drug shortages were highlighted at both #SGOmtg and #ASCO24. What resources for health care providers and patients are available?
T6: Are there recent studies surrounding palliative care, survivorship, and psychosocial research that could help gyn cancer survivors?

Thanks to everyone who joined us. Remember you can continue our discussion about research on @smart_patients by joining Smart Patients at https://www.smartpatients.com/partners/gyncsm.

Our next Chat will be on September 11, 2024 at 8pm ET. See you then!

Dee and Christina


Monday, June 10, 2024

Gyn Cancer News June 12, 2024 #gyncsm chat

We are happy to once again be sharing the latest Gynecologic Cancer Research News as we cover studies from 2024's #SGOmtg and #ASCO24 annual meetings. Join us on Wednesday, June 12, 2024 at 8pm ET (7pm CT, 5pm PT) as we discuss how recent findings may impact gynecologic cancer care.

Society of Gynecologic Oncology Annual Meeting on Women’s Cancer (SGO) news round-up via Cancer Network
https://www.cancernetwork.com/conference/sgo

ASCO Annual Meeting: Gynecologic Cancer news round-up via Cancer Network
https://www.cancernetwork.com/conference/asco-gynecologic-cancer

We will discuss topics in gyn cancer research presented at both meetings which oncologists and patients found most interesting, focusing on which of these studies could make the greatest impact on patient lives.
T1: What #SGOmtg presentations/posters did you find most interesting?
T2: Which #ASCO24 studies do you think may be of most interest to patients?
T3: In the last year, have there been any practice-changing gyn cancer studies patients should know about? Combo treatment studies, immunotherapy and antibody drug conjugate studies? Rare cancer therapies? 
T4: What are some of the "hot topics" in gynecologic cancer research currently? Will AI play a role? 
T5: Once again, cancer drug shortages were highlighted at both #SGOmtg and #ASCO24. What resources for health care providers and patients are available?
T6: Are there recent studies surrounding palliative care, survivorship, and psychosocial research that could help gyn cancer survivors?

What studies were of most interest to you? 

See you Wednesday evening. 

Dee and Christina 

Wednesday, March 13, 2024

March 13, 2024 Using Immunotherapies to Treat Gyn Cancers

We were pleased to have Dr. Katie Kurnit (@KatieKurnit) a gynecologic oncologist from the University of Chicago (@UCCancerCenter) join us for our chat on Using Immunotherapies to Treat Gyn Cancers. 

Below is a sampling of the responses to our topic questions. You may find the transcript here and analytics here

T1: What is immunotherapy? How is it different from other gyn cancer treatments (surgery, chemo, radiation)? How many types of immunotherapy are there? 

  • via@AmericanCancer Immunotherapy is treatment that uses a person's own immune system to fight cancer. Immunotherapy can boost or change how the immune system works so it can find and attack cancer cells.
  • T1: Immunotherapy is a cancer treatment that works with the person’s immune system to fight cancer. This makes it different from chemotherapy which focuses more on killing cancer cells directly. (1/2)
  • T1: Both immunotherapy and chemo can travel throughout the body, rather than focusing on a specific area of the body like radiation or surgery. And there are lots of different immunotherapy treatments emerging now! (2/2) #gyncsm
  • This graphic from the @AACR Cancer Progress Report shows the different types of immunotherapies


T2: Which gyn cancers have immunotherapy treatments approved by the FDA? Are there immunotherapies in trials now that show promise? 
  • T2: Currently, both #cervicalcancer and endometrial cancer have tumor type-specific @FDA approvals. Each of these indications requires some molecular testing on the tumor to help determine which regimen would be best. (1/2) 
  • T2: There are also broader approvals that are based on a molecular test result, such as mismatch repair deficiency or high tumor mutational burden, that have immunotherapy approvals for any type of cancer . (2/2) 
  • Excellent review of immunotherapies in this @ASCO publication  ascopubs.org/doi/10.1200/ED Immunotherapy in Gynecologic Cancers: What We Know Now and Where We Are Headed  
  • Here's another excellent one specific to #ovariancancer #gyncsm ascopubs.org/doi/full/10.12 Cervical Cancer immunotherapies include vaccines like Gardasil-9® for HPV , ADC like Tisotumab vedotin and ICI Pembrolizumab  cancerresearch.org/cancer-types/c
  •  Immune response very critical given #cervicalcancer and other #hpvcancers are viral mediated! Would just clarify the #hpv vaccine is available for primary prevention but not tx but others are for therapy of recurrent disease currently

T3: How is it determined if immunotherapy is an appropriate treatment option for an individual?

  • Your general health is considered. What kind of cancer; size of tumor; stage. Have you had prior treatment?
  • T3: The individual and doctor would discuss the pros/cons of both the immunotherapy and the other treatment choices. Certain medical conditions, like some autoimmune diseases, may make it less safe to use immunotherapy.
  • T3: There is a need to improve access to molecular tests, especially in developing countries. This limits the decision to use immunotherapy.
  • T3: Even if no immunotherapy is approved, remember that many other immunotherapies are being tested in clinical trials 
  • T3: currently FDA approval in #gyncsm is in endometrial and cervical depends on specific molecular testing; testing can also help clarify immunotherapy alone vs with other drugs ex. Pembro/lenvima vs Pembro only in #endometrialcancer recurrence

T4: What is the immunotherapy treatment experience like? What are the common side effects with immunotherapy and how do they differ from other gyn cancer treatments?

  • T4: In general, I've found that many people feel well while receiving treatment with an ICI, and may end up staying on this treatment for several yrs if it works well. Side effects are different than chemo
  • T4 One different one that I heard of was blurry vision on Mirvetuximab soravtansine. Certain eye drops were prescribed for use during the treatment. But it was not a long term effect.
  • yes! being aware of side effects seen in #clinicaltrials of these newer drugs allows us to be prepared and have a plan in place to treat symptoms when they arise 
  • T4: Like any cancer treatment, side effects vary widely between individuals. It important to stay in communication with your healthcare team about side effects and there are many options to try to mitigate various side effects. 
  • T4: Side effects are different from traditional chemo, and are often due to inflammation by the immune system; so-called “-itis” es. Ex colitis (inflammation of the colon), thyroiditis (of the thyroid), hepatitis (liver), etc.

T5/6: What advice would you give to others considering an immunotherapy treatment or trial? What are some resources for learning more about immunotherapy in treating gyn cancers? 

Remember you can continue our discussion about immunotherapy treatments on Smart Patients by joining Smart Patients at https://www.smartpatients.com/partners/gyncsm

We are chatting quarterly this year. See you June 12, 2024 at 8PM ET as we discuss the latest research news from the #ASCO24 and #SGOmtg . 

The Society for Gynecologic Oncology @SGO_org is hosting their meeting March 16-18. So stay tuned over the next few days to #SGOMtg for updates on immunotherapy and all things gyn cancer related. We'll do a #gyncsm research update chat this summer.

Dee and Christina
#gyncsm Co-founders

Additional Resources 
Cancer Research Institute resources on immunotherapy 

CancerDotNet Side Effects

American Cancer Society - Side Effects 
Monoclonal Antibodies 
Immune Checkpoint Inhibitors

NCI general immunotherapy pag