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 Immunotherapy in Gynecologic Cancers: What We Know Now and Where We Are Headed  
  • Here's another excellent one specific to #ovariancancer #gyncsm Cervical Cancer immunotherapies include vaccines like Gardasil-9® for HPV , ADC like Tisotumab vedotin and ICI Pembrolizumab
  •  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

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

Friday, March 8, 2024

Immunotherapies to Treat Gyn Cancers - March13, 2024

We invite you to join us at 8pm ET (7pm CT, 5pm PT) on Wednesday, March 13th as the #gyncsm community chats about Using Immunotherapies to Treat Gyn Cancers. The last time we chatted about immunotherapy treatments was 2018. We've seen the treatment landscape for gynecologic cancer change as new immunotherapy treatments have received FDA approvals. 

From Cancer-dot-net we learn that:

"Immunotherapy is a type of cancer treatment. It uses substances made by the body or in a laboratory to boost the immune system and help the body find and destroy cancer cells. Immunotherapy can treat many different types of cancer. It can be used alone or in combination with chemotherapy and/or other cancer treatments."

Join us as we describe and share how monoclonal antibodies, CAR-T therapies, immune checkpoint inhibitors, vaccines and cytokines are used to treat gynecologic cancers. 

The video from the National Cancer Institute describes how the immune system fights cancer. 

Guiding our discussion will be the following Topic Questions (T#:)

T1: What is immunotherapy? How is it different from other gyn cancer treatments (surgery, chemo, radiation)? How many types of immunotherapy are there?
T2: Which gyn cancers have immunotherapy treatments approved by the FDA? Are there immunotherapies in trials now that show promise?

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

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?

T5: What advice would you give to others considering an immunotherapy treatment or trial? What are some common patient concerns? How do patients contribute to research?  

T6: What are some resources for learning more about immunotherapy in treating gyn cancers, keeping up with what's new, and finding what trials are open?


We look forward to seeing you on March 13th!

Dee and Christina

Co-founders #gyncsm 

Friday, February 23, 2024

The #gyncsm Community Partners with Smart Patients

We are proud to share information about our renewed partnership with Smart Patients, an online peer-to-peer support forum for patients and their families. This partnership will allow our community to extend its ability to help those impacted by gynecologic cancer by adding virtual social and emotional support to our current presence and chat on X (formerly Twitter). Patients and families affected by gynecologic cancers can join the Smart Patients gynecologic community for free to share, interact and learn from each other in a safe, supportive environment. 

Patients/family members are invited to join the gynecologic cancer community through this link: Smart Patients GYNCSM Community. Individuals can join the community by securely sharing their email addresses and setting up a free personal account. Once the account is confirmed participants will have access to information and resources and be able to participate in community conversations on topics of interest. 

Smart patients is an online community where patients and their families affected by a variety of illnesses learn from each other about treatments, side effects, clinical trials, and how it all fits into the context of their experience. While providing patients with safe and high-quality peer support, they help the healthcare system learn from patients in order to serve them better. 

Follow Smart patients on these platforms:
Facebook: /smartpatientscommunity
X: @smart_patients
Instagram: @smart_patients_community

We look forward to seeing you on Smart Patients and at our next chat, March 13, 2024 at 8pm on X. 

Dee and Christina

Tuesday, February 20, 2024

Let's Chat in 2024

Since we started this community and chat in 2013, the world of social media has changed including X, formerly Twitter. Since many of the chat platforms we used on Twitter are no longer available for use with X - or are only available if you are a premium member - we wanted to provide an update on how you can join us. See the box on the right for the dates for this year's chats. 

What is a Chat?

A Tweetchat (or maybe now called an X-chat?) is a virtual gathering of people discussing a particular subject in real-time online. Using a unique hashtag helps identify the tweets that belong to the discussion. If you join the #gyncsm community for one of their chats (8pm ET) you will add the hashtag #gyncsm to each post. The conversation happens in real-time and can take place at a fast pace.

You may follow along any chat online by placing in your browser. Note, that if you want to participate fully and comment on posts, you will need to sign up for an X account and create a handle. You may find us by searching our handles: @gyncsm for gyncsm, @btrfly12 to follow Christina, and @womenofteal to follow me. And of course use hashtag #gyncsm for chatting and sharing information important to our community. 

Follow our hashtag at any time by following the steps below.

Follow a Hashtag

1. Log into X.

2. In the search box on the right place #gyncsm. The window will look like this. 

3. Click Latest in the menu at the top of the page. This brings you to a window that shows the most recent stream of posts using the #gyncsm hashtag.  See example below. 

The #gyncsm hashtag (and those for other cancer communities like #bcsm for breast cancer and #lcsm for lung cancer) are used all the time - not just during chat time - to share information of interest to our respective communities.

So what happens on a #gyncsm chat night?
The #gyncsm chat takes place at 8pm EST. A few minutes before the 8pm EST sign into X. You will see that some of us have already tweeted using the hashtag to remind our followers to join us. 

The  #gyncsm Chat Format

Introductions  (8:00-8:10 pm EST)
Moderators will introduce themselves. We will then ask those who feel comfortable doing so to introduce themselves. Remember to add the #gyncsm hashtag each time you post. 
Don’t worry if you feel like just “eavesdropping” on the conversation - that is OK. You can always just post to us directly (@gyncsm) or post a simple statement such as "#gyncsm I'm listening". You can also e-mail us ( with questions/comments after the chat is over.

Questions/ Discussion (8:11- 8:49pm ET) 
Each chat will have a specific overall discussion topic. The moderators and our guests will be prepared to share links and information that relate to our night’s topic. The discussion will revolve around 4-5 questions regarding the night’s topic. As we post each topic question everyone is invited to comment. We ask that you be sure to use T1, T2, T3, etc at the beginning of your post so that we know which question you are responding to. When we have special guests (authors, advocates, researchers or social workers) join us for a chat the format may be modified for those occasions. During chats we mostly ask participants to please refrain from asking questions about your own personal health issues. Rather - jot those questions down and call or speak to your doctor at your next visit. 

Summary /Closing Remarks (8:50- 9:00pm)
During this time we will ask you to share what you learned by starting your post with "TIL" standing for "Today I Learned ". We will also remind you of the date, time, and topic of our next chat plus how to check for a summary and transcript of the chat on this blog. 

Chat Tips
Here are some things to keep in mind if you are new to chats:
  • You may use 280 characters per tweet.
  • The pace may be quick at times with participants commenting but please don’t be discouraged. You can scroll back in the conversation to catch up. For most health related chats, transcripts are available on the communities website ( for gyncsm) or on Symplur, part of Real Chemistry website. ( 
  • Please try to stay on topic. Side conversations are distracting and will make a crowded discussion more difficult to follow.
  • Try to keep retweets to a minimum so that the discussion can flow smoothly. 
  • The chat is not the place to promote your project / book / event/ fundraiser. We know you are all doing wonderful things but please feel free to share with all after the chat is completed.
  • Be mindful that although we may all be dealing with a gynecologic cancer, the experiences we have may not be the same. Please do not criticize another person's treatment decision.

We look forward to having you join us this year! 

#gyncsm Co-founder 

Monday, January 15, 2024

A New Year and News

Welcome to 2024! 

We have decided to chat four times in 2024. We will remain available on X between chats to share research news and to offer support to those impacted by gynecologic cancers. Our June chat will review gyn cancer research news since last year, including the SGO Annual Meeting in March and ASCO Annual Meeting in June.

We are pleased to welcome Dr Nita Lee as one of our Health Care Moderators. Dr Lee is an Associate Professor of Obstetrics and Gynecology at the University of Chicago Comprehensive Cancer Center and the Associate Director of the University of Chicago Comprehensive Cancer Center Community Outreach and Engagement. She specializes in the diagnosis and treatment of gynecologic malignancies. In addition, in her patient-centered research, Dr Lee, studies survivorship, disparities and the psychosocial needs of gyn cancer survivors. She has been named Top Doc in Gynecologic Oncology by Chicago Magazine. Welcome Dr Lee!

Remember to keep posting on X using the #gyncsm hashtag. See you in March! 

Dee and Christina

Wednesday, November 8, 2023

11/8/23 Patient Navigation in Gyn Cancers

We were pleased to have Roberta Codemo (@roberta_codemo), Patient and Financial Navigator and Debra Rundles (@RundlesDe), Oncology Nurse Navigator join the #gyncsm community for tonight's chat about patient navigation. 

You may find our transcript here and analytics here. Resources shared during the chat may be found at the end of the post. Below is a sampling of the responses to our topic questions. 

T1: What is a patient navigator? Are there different types? Do all patients have nurse navigators?

  • There are lay (non-clinical) navigators and nurse navigators. The primary distinction between the two are that nurse navigators hold a RN license.
  • from@OncNav ONNs (Oncology Nurse Navigators) patients “navigate” the healthcare system and help them get timely care and helps reduce disparities 
  • "Navigation is the process of helping patients overcome healthcare system barriers and providing them with the timely access to quality medical and psychosocial care from before cancer diagnosis through all phases of their cancer experience"
  • UCAN serves as patient navigators. We find sevices that are available beyond what we are able to do for patients. We also bring in nurses and doctors to help give advice during our support sessions to help navigate as well.
  • Patient navigators work as part of the health care team and help patients overcome barriers to care and help them understand the health care system. Barriers to care include transportation, child care, food insecurity, and housing
  • Oncology Nurse Navigator: A professional RN with oncology-specific clinical knowledge who offers individual assistance to patients, families, and caregivers to help overcome healthcare system barriers. throughout all phases of the cancer continum
  • Oncology Patient Navigator: A professional who provides individualized assistance to patients and families affected by cancer to improve access to healthcare services. A patient navigator may work within the healthcare system
  • Oncology Social Work Navigator: A professional social worker with a master’s degree in social work and a clinical license (or equivalent as defined by state laws) with oncology-specific and clinical psychosocial knowledge who offers individual assistance to patients

T2: What are some of the types of things that patient navigators do for patients? Do they also support caregivers?
  • Yes navigators support caregivers. Navigators rely on the patient to discuss who their support system and team will be and receive direction on what role each caregiver has in their treatment plan.
  • Patient navigators work with patients and their families to ensure that patients get the care that they need from diagnosis through survivorship.

T3: At what stage in a patient’s diagnosis does a navigator most often play a role?
  • Starting at the time of diagnosis, navigators will meet with patients and do an assessment to understand what a patient's needs are be it housing, transportation, child care or food insecurities.
  • Once a patient's needs have been assessed, navigators will refer patients to resources so they can get the help that they need and ensure that patients will be able to move forward with their care plan.
  • Navigators can help from initial diagnosis through survivorship: The Role of the Nurse Navigator in Women's Health from @oncnav

T4: Are there certifications for patient navigators?
  • Academy of Oncology Nurse & Patient Navigators (@OncNav) has a certification program for nurse navigators. 
  • In addition to formal patient navigator certifications, there is a cool certification program via @socialhealthnet Patient Leader Certification Program
  • I have Certificates of Completion in Patient Navigation and Financial Navigation through George Washington University. There are no formal training programs.
  • Yes. Currently there are Certification ONN-CG (Oncology Nurse Navigator Certified Generalist) and OPN-CG (Oncology Patient Navigator- Certified Generalist) Certifications occur via AONN.

T5: Where can a patient find navigation services?
  • Most major cancer centers have navigators on staff, though not all. There is a huge demand for navigators. You can also go to Advo Connectionand the National Association of Healthcare Advocacy websites to find private navigators.
  • Based on the conversation with those diagnosed with Uterine cancer we hear that they were offered no navigation services. I wasn't either back in 2009.
  • Since patient navigation is still emerging, I would imagine anywhere online patients gather - like through cancer centers or sites like @smart_patients @InspireIsHealth- is one of the best places to get referrals for navigators if your cancer center does not offer.
  • Usually through the organization but the initial contact can be through the medical provider.
  • services can be found at physician offices, hospitals, and some resource organizations. Sometimes patients and medical professionals are not aware of the value of navigation. Resource: CONQUER magazine"

Note there is no #gyncsm chat in December. Stay tuned for information about our 2024 chats. 

Happy Thanksgiving and Happy Holidays!

Dee and Christina


Friday, November 3, 2023

Patient Navigation in Gyn Cancers - November 8, 2023


We hope you can join us on Wednesday November 8, 2023 at 8pm ET (9pm CT, 5pm PT) for the last #gyncsm chat of 2023. Out topic of discussion will be Patient Navigation. 

The American Cancer Society states that "Patient Navigators can help with practical needs, physical needs and social and emotional needs". We will have patient navigators Roberta Codemo and Debra Rundles joining us to share more details about the role navigators play in the lives of gynecologic cancer patients. 

Questions guiding our chat will include:

T1: What is a patient navigator? Are there different types? Do all patients have nurse navigators?

T2: What are some of the types of things that patient navigators do for patients? Do they also support caregivers?

T3: At what stage in a patient’s diagnosis does a navigator most often play a role?

T4: Are there certifications for patient navigators?

T5: Where can a patient find navigation services?

If you have been helped by a patient navigator we hope you can stop by and share your experience with our community. 

We hope you can join us on X on the 8th! 

Dee and Christina 
#gyncsm Community Co-founders