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

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 

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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, Cervivor, and 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 

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Wednesday, April 14, 2021

OCRA Community Partner

Since early in our history as a community for those impacted by gynecologic cancer, the #gyncsm community has been an Ovarian Cancer Research Alliance (OCRA) Community Partner. You can learn more about Community Partners here. 

We thought it important to share this What You Need to Know About Ovarian Cancer graphic with all of you.  Feel free to share with others. 

 


Just a reminder, there will be no #gyncsm chat this month. Save the date for our next chat Wednesday, May 12, 2021 at 8pmET (new time for 2021) when we’ll discuss “Cancer Survivors: Risk of Recurrence and Other Cancers/Diseases”.


Dee

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Friday, September 11, 2020

What I Didn’t Get to Say

 

We are honored to share this post from recent chat guest Adrienne @AdrienneEcana who is a survivor of both endometrial cancer and ovarian cancer. She is a patient advocate and serves as an ambassador for the Endometrial Cancer Action Network for African Americans (ECANA).





Recently I was a guest for a live chat with #gyncsm (Gynecologic Cancer Social Media). I was honored to be asked because I had never done a live chat before, so I spent the day before writing and re-writing my answers to frame them correctly. I had a lot I wanted to say about how I felt my journey to diagnosis took longer than it needed to. I wanted to speak about how the invisible barriers that kept me from getting diagnosed sooner were just as important as the evident ones. But I soon found out that a tweet chat was not a platform that would readily support the way I wanted to tell my story. Even though I prepared for it, I quickly became flustered and started to feel a little inadequate by the lack of depth in my responses. So instead of trying to paint the bigger picture, I defaulted to one or two line answers that did little to bolster the points I was trying to make. My lack of familiarity in this space had me at a disadvantage and I couldn’t help but think that this was exactly how my cancer journey began. The countless doctors, gynecologist and emergency physicians that I readily opened my stir up supported legs to made little space for me to do the same with my mouth. My time there was always rushed and my words tripped over each other coming as I tried to describe how I felt about the changes my body was taking me through. It was dizzying.

In 2015, my body started authoring a story of menorrhagia confusion that left my head spinning. I never knew what to expect month to month. I began seeing a myriad of doctors but their level of concern never seemed to match my own. And each time I had left from being in front of one doctor with no answers, it would only leave me with more angst about having to seek out another. So, as I went from doctor’s offices to emergency rooms trying to string together words, dates, times and events that would give my story effective credibility, I began to realize that it just wasn’t going to be enough. The fact that my father died of colon cancer wasn’t enough. The fact that I had had a history of ovarian cancer wasn’t enough. The fact that I had been missing periods for months and they would then be marked by heavy bleeding for days wasn’t enough. The fact that it was almost always accompanied by debilitating pain that kept me out of work wasn’t enough. It only became enough when on March 28th 2016 I declared “This is enough”!!

I was away on a week long job orientation where the employer offered me health insurance day one of the job. I was ecstatic because I had lost insurance coverage with my previous employer of five years after the ACA allowed for businesses with less than 50 employees to have their workers find “affordable” care on the exchange. To make it work the Home Health and DME company had to separate into a two part business. The home health or nursing side kept their insurance because they had more employees but the DME side I was on was sent to the exchange. I was a young 40 something with pre-existing conditions and no dependents. It turned out to not be so affordable for me so I went without. On day two of my orientation, I woke up that morning met with a heavy flow of menstrual blood and I knew two things. The first was that I had had enough of the guessing game and two I finally had insurance to put it to an end. Admittedly, I was scared. It felt ominous and foreboding somehow, I knew this period was different because I hadn’t had one in months. I was told I was peri-menopausal and that my flows would become lighter and lighter. This didn’t look or feel like that all. For days I bled so heavily it soaked through two pads and my undergarments. Honestly, it felt more like I was having a miscarriage. Weeks later, when I was finally able to see a specialist, I was still bleeding. Despite the level of discomfort that it came with, I asked to have an internal exam anyway and held my breath listening for the words I knew would come. I breathed a sigh of relief as she said “I think it's time to schedule an ultrasound and biopsy to see if there is a possibility of cancer”. Somebody finally said it. Relief flooded over me after knowing that I wasn’t going to be coaxed or eased out the door by another conversation about fibroids or peri- menopause. For the first time I was being educated on how my high risk history coupled with my symptoms was more than likely the beginnings of what has now become my cancer chronicle. For months I had been trying to make my symptoms mean something to someone and this is what it took for someone to go the extra mile. Was it having the right amount of blood? Having the right amount of insurance or finally having the right doctor? Maybe it was the combination of all three met with the right amount of determination in my voice that this time I wasn’t walking away without a clear plan of action.

The story I’m telling however is not a new one. It’s been told by numerous others before me. So I am just one of many and whether by default or design, black women tend to share the common problem of aggregation when it comes to their reproductive health. Most of us at one time or another have been told that the culprit behind our monthly state of misery was due to the high incidence of fibroids that occur in our community. That it was likely due to our diet or DNA. We walked away with never any real plan of treatment and it was a risk factor we learned to accept even against our own self interest and to sometimes our own detriment. But for now, for me at least, I’d get some answers. Though I knew it would be nothing that I’d want to hear, I did take some solace in knowing that all the pain, all the abnormal bleeding, all the bloating and unpredictability had a name.

I was diagnosed with Endometrial Cancer stage IIIC in June 2016. I had a full hysterectomy that month to be followed by 6 rounds of carbo/taxol and 25 rounds of pelvic radiation. It’s funny that I felt almost relieved; knowing what treatment I was going to have to face felt less problematic than getting to that point. There is a settling that happens in resolution. It’s the not knowing that’s troublesome and my mind still tends to grapple with the one big problem throughout the beginning of my journey; the absence of any real urgency around what I now know were early symptoms of cancerous changes happening inside of my uterus. This begs the question of how could life threatening changes hide in plain sight from the very people I trusted to know what was going on when I didn’t have a name for it? To that end, I don’t think of it as an incidence to which one should apply blame. Only that it was a series of missed opportunities to engage in a power sharing conversation about my reproductive health and the direction of how my plan of care should evolve.

Now, in hindsight, I try to think about what more I could have done to have enriched those conversations. How I could have been more educated about endometrial cancer to where I would have been able to initiate the conversation about my own risks. If I had, would that have changed the dynamic? Would those uterine fibroids and ovarian cysts that appeared on ultrasounds somehow be seen as more menacing to the specialists? Would the heavy bleeding be given more thought provoking responses because I came more equipped in how to talk about it? Did I miss my window of opportunity by trying to paint the bigger picture when I was the bigger picture? I should have challenged them to see me, forced them to hear me, cajoled them into believing me. But if showing up as my Black self, with my high risks and cancer history; laying down my father’s death to colon cancer hadn’t gotten their attention there was not much left. Months of concern that drug me in and out of doctors offices remained void of validation that would have opened doors for questions I never considered before I had to jump feet first into the battle of my life.

As I am writing this, I realize that advocating for myself is where I should have prepared better. It’s where I should have recognized that the barriers weren’t invisible at all. They were all just the metaphorical walls of communication waiting to be scaled by my determination to fight for my reproductive health. I can see now that my cancer journey began long before I was ever diagnosed and had I known, I would have prepared for it the way I prepared for that tweet chat. I would have stated and re-stated all the important points first, using my space more wisely. I wouldn’t rush myself or care how long it took, I only would have cared that I was heard.

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Sunday, June 14, 2020

University of Pittsburgh - HELPeR Study

We are happy to support our friends at the University of Pittsburgh by sharing an opportunity to be part of the University's  HELPer (Health E-Librarian with Personalized Recommender engine)study. Dr. Heidi Donovan (@HeidiSDonovan)  and Dr. Young Ji Lee (@YoungJiLeePitt) are funded by the National Library of Medicine to develop a virtual librarian system for ovarian cancer patients and caregivers. Please find information from Dr Lee below.

Currently many patients and caregivers who sought health information on the web reported feeling overwhelmed by the vast amount of unfiltered information and unqualified to determine the quality, and relevance of the information. The goal of HELPeR (Health E-Librarian with Personalized Recommender engine) study is to build a virtual librarian system that suggest information for ovarian cancer patients and caregivers reflecting their needs. We are especially interested in what information is most valuable to you when you are searching for online information, support, and resources related to ovarian cancer.
We look forward to seeing you in July for our chat on Gyn Cancer Research News. 

See you then, 

Dee and Christina
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Wednesday, December 11, 2019

Dec. 11, 2019 Survey Results and Open Mic

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

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

Who responded to our 2019 survey?

How did participants interact with the community?

What was learned and used by survey participants?

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

 How can #gyncsm do better? 

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

1. The difficulties women with ovarian cancer have getting into phase 3 clinical trials and recruiting minorities to clinical trials. 
  • Clinical trials are tough as each one is so different and finding even the right contact person at each site is a challenge. @power4patients and others have good resource collections but still daunting
  • You can find all the clinical trials open in the country on https://clinicaltrials.gov/  You can search under ovarian cancer. Or often times your local health networks will have them on their website.
  • Is it based on location, I wonder, or other factors about age, stage, and treatment? I wonder if that will change when a PARBs more readily available earlier no matter what BRCA status?
  • Women get frustrated by exclusion criteria too. Very disheartening for those who feel they’ve run out of options.
  • Helping Cancer Patients Navigate #ClinicalTrials #gyncsm #ovariancancer Via ⁦@biospace⁩ https://www.biospace.com/article/helping-cancer-patients-navigate-clinical-trials/

2. It still seems that minority pops are overlooked in clinical trials, yet the data from these groups is crucial. Minority participation still stand at around 4%, well below the national averages. Why is this? 
  • That's a great question. My cancer center just opened a Health Disparities center to try to understand and increase numbers of minorities who participate. As for why - I'll start with Language barriers, travel, child care,
  • Black and Hispanic women are definitely under-accrued to clinical trials in ovarian cancer but this disparity is less pronounced in endometrial and cervical cancer
  • That question has been explored quite a bit. There are a number of findings. The first is language barriers make it difficult to explain studies to nonEnglish speaking people. The second are cultural barriers formed by mistrust of The medical establishment.
  • Those are some real issues, especially the issue of trust. But that places a lot of the ownership on the populations, not the industry. I'd include the fact that clinical trial orgs often use the old pipelines for trials & are not inclusive and they need to be.
  • Enrollment of Racial Minorities in Clinical Trials: Old Problem Assumes New Urgency in the Age of Immunotherapy | American Society of Clinical Oncology Educational Book https://ascopubs.org/doi/full/10.1200/EDBK_100021#_i6
3. Surgery for Recurrence Ovarian Cancer Does Not Improve Survival    https://www.cancer.gov/news-events/cancer-currents-blog/2019/ovarian-cancer-surgery-recurrent-survival
  • I’m still assuming that additional surgery is good for women who don’t respond well to chemo..?
  • That's disheartening. I'll have to read it later. I wonder if that conclusion applies to all cell types and grades of ovca.
4. Research and ovarian cancer advocate @Stigetta was involved in this paper that just came out: A Priorities Assessment Tool to Support Shared Decision Making, Maximize Appointment Time, and Increase Patient Satisfaction in Women With Ovarian Cancer
https://ascopubs.org/doi/abs/10.1200/JOP.19.00455?utm_source=Email&utm_medium=Email&utm_campaign=JOP+ETOCs+9.4.19+Ongoing&email=865aa94a58f0b27b9edd2aa71d80e9a99b924971f7ce90316a0d742b2e9c9b1c&

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


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

Happy Holidays everyone! 




Dee
#gyncsm Co-founder 


Resource links shared, but not included above:

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

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

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

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

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

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



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Wednesday, April 10, 2019

Origination of High Grade Serous Ovarian Cancer - April 10, 2019 Chat

We were very pleased to have as tonight's chat guest, Dr. Ronny Drapkin (@ronny_Drapkin), Director of the Penn Ovarian Cancer Research Center (OCRC). Dr. Drapkin joined us to discuss his research into the Origin of High Grade Serous Ovarian Cancer (HGSOC). As shared at the beginning of the chat "Of the 4 main OC types, most #ovariancancer (85-90%) falls into the Epithelial type. High-grade serous (HGSOC) is the most common subtype of ovarian cancer, making up ~75% of Epithelial ovarian cancer, which includes fallopian tube cancer and primary peritoneal cancer."

The complete transcript may be read here and the analytics please check here.
(Notes: FT = Fallopian Tube, HGSOC= High Grade Serous Ovarian Cancer, STIC serous tubal intraepithelial carcinoma, RRSOs = Risk-reducing salpingo-oophorectomy = high risk but not cancer yet removal of ovaries and fallopian tubes)

Here are Dr. Drapkin's responses to our questions:

T1. What makes HGSOC different from other sub-types in terms of the tumor itself, how it spreads, how it is treated, and its prognosis?

Point 1 (1/2):HGSOC is the most common subtype of ovarian cancer. Unfortunately, it tends to spread before detection. Once it is diagnosed, most patients get treated with surgery and chemotherapy.
Point 2 (2/2):Initially, the majority of patients will have a positive response to the treatment. Unfortunately, most will have their tumors come back.

T2. When did research start pointing to the fallopian tubes as the origin site of HGSOC? 

 Point 1 (1/4):After the BRCA genes were cloned in the mid-1990s, we began offering women at risk prophylactic surgery. That included mastectomy for breast cancer and removal of the ovaries (and fallopian tubes) for ovarian cancer.
Point 2 (2/4):The removal of the FTs along with the ovaries was surgically convenient and most of the attention was placed on the ovary. As early as 2000, reports began to emerge that some of these prophylactic specimens had abnormal looking cells in the FT.
Point 3 (3/4):Around 2005-2006, Dr. Chris Crum (my clinical mentor during residency) @BrighamWomens developed the SEE-FIM (Sectioning and Extensively Examining the FIMbriated end of the fallopian tube) protocol to get a better understanding of what was happening there.
Point 4 (4/4):That is when we realized that most of these tumors were arising from the tube rather than the ovary. Subsequent use of SEE-FIM confirmed this in publications around the world.


T3: What characteristics did you study when you examined fallopian tube lesions versus lesions of the ovary? How are BRCA mutations involved?

Point 1 (1/6): Much of that data is based on histological studies. We wanted to see if we could definitively show that these tumors arise from precursor lesions in the FTs by using next generation sequencing and advanced bioinformatic tools.
Point 2 (2/6): We identified cases of HGSOC that had precursors identified in the FT by pathologists. We then used laser-capture microdissection to carefully isolate those cells and applied whole-exome sequencing to characterize the mutations and copy number changes.
Point 3 (3/6): These efforts revealed that mutations in p53 are among the earliest defects detectable. We also found that copy number alterations (amplifications or deletions in certain genes or chromosomal regions) are also frequent, early, and involve the BRCA genes.
Point 4 (4/6): As lesions become more complex they retain the early defects (p53 mutations and copy number changes) and acquire additional ones.
Point 5 (5/6): Using computational tools we were able to develop a molecular clock. This approach showed that there are 6-7 years between the development of a precursor lesion (called a STIC) and clinically evident 'ovarian' cancer.
Point 6 (6/6): However, once the tumor cells get to the ovary, there are only 1.9 years before they spread to the rest of the abdominal cavity. Hence, the window of opportunity to intervene is the 6-7 years before the cells get to the ovary.  

T4a: Are HGSOC cancer cells found in the fallopian tube different than those found in/on the ovary? How do they differ from Fallopian Tube Cancer cells?

 While there have been many efforts to find early cancer cells in/on the ovary, no one has been able to reproducibly identify them. Since SEE-FIM, a number of systematic attempts have tried to find early precursors in the ovary but have failed.

 T5: As we look to the future: How will knowledge of where a majority of ovarian cancers originate impact women at increased risk? How might this research help in the development of an early detection test? What is the impact for women diagnosed with ovarian cancer?

(1/4): Tremendous potential here! The most obvious areas will be in prevention and early detection.
(2/4): The significant morbidity associated with removal of the FTs and ovaries (surgical menopause) has led up to 30-40% of BRCA carriers to delay or refuse risk-reducing surgery.
(3/4): For these women, there are ongoing studies looking at the effect of removing the FTs first (interval salpingectomy) and later removing the ovaries (delayed oophorectomy). One example is the WISP study by @KarenLuMD
(4/4): For average risk women there is ‘opportunistic salpingectomy’ - for example, if you are having a hysterectomy for any reason, the rec is to remove the FTs

@temkins A5: For patients it's important to know that ovarian, fallopian tube and primary peritoneal high grade serous cancers are considered the same disease for the purpose of treatment

T6:How will knowledge of where a majority of ovca originate impact women at increased risk? How might this research help in the development of an early detection test? What is the impact for women diagnosed w/ ovca?

This is the most exciting part. How does the FT matter!?! Lots of activity in this area. We are actively working with a company (nVision Medical) that has developed a modified hysteroscope that can sample the cells in the FT. It is like a pap smear of the FT. We have a phase II clinical trial open at UPenn (and other place) looking at the utility of this device.
T6: the goal of such a device/method is to detect early FT cancers before they get to the ovary. We are currently testing it in women with pelvic masses but we are already planning to test it in BRCA mutation carriers.
T6: Another approach relates to the concept of 'tissue proximal sampling'. This means that if we can get closer to the source of the cancer, perhaps we can detect it earlier. Efforts from @HopkinsMedicine are resulting in exciting results with a PapSeek test. PapSeek uses a regular endocervical pap brush to collect cells and determine if they harbor molecular defects of ovarian cancer.


Save the Date! Join us on Wednesday, May 8th at 9pmET for our discussion on Supplements/Vitamins - Are they helpful?

 See you next month, 

 Dee
#gyncsm Co-founder 

 RESOURCES

Sectioning and extensively examining the fimbriated end (SEE-FIM) of the fallopian tube in routine practices, is it worth the effort? https://www.ncbi.nlm.nih.gov/pubmed/30506766

Microscopic and Early-Stage Ovarian Cancers in BRCA1/2 Mutation Carriers: Building a Model for Early BRCA-Associated Tumorigenesis http://cancerpreventionresearch.aacrjournals.org/content/4/3/463

WISP - Women Choosing Surgical Prevention https://wisp.mdanderson.org/WISP_Mobile/index.html

Women’s cancers: how the discovery of BRCA genes is driving current concepts of cancer biology and therapeutics https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6411414/

High grade serous ovarian carcinomas originate in the fallopian tube Nature magazine https://www.nature.com/articles/s41467-017-00962-1

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Thursday, April 4, 2019

April 10, 2019 Origination of High Grade Serous Ovarian Cancer


We are so pleased that this month's chat guest will be Dr. Ronny Drapkin (@ronny_drapkin). Dr. Drapkin is the Franklin Payne Associate Professor of Pathology in Obstetrics and Gynecology at the University of Pennsylvania's Perelman School of Medicine. His research focuses on understanding the genetic, molecular and physiological factors that drive the development of gynecologic cancers. 

April's chat will focus on the origination of high grade serous ovarian cancer. In 2017, Dr. Drapkin and colleagues published the paper High grade serous ovarian carcinomas originate in the fallopian tube in Nature communications. You may read the article here. An understanding of the precursors of ovarian cancer and gene alterations can lead to the development of an early detection test.

We will use the following topic questions to guide our discussion:

T1: What makes HGSOC different from other sub-types in terms of the tumor itself, how it spreads, how it is treated, and its prognosis?

T2: When did research start pointing to the fallopian tubes as the origin site of HGSOC? 

T3: What characteristics did you study when you examined fallopian tube lesions versus lesions of the ovary? How are BRCA mutations involved?

T4a: Are HGSOC cancer cells found in the fallopian tube different than those found in/on the ovary? How do they differ from Fallopian Tube Cancer cells?
T4b: Patients/survivors - Have your pathology reports shown cancer cells in your fallopian tubes?

T5: As we look to the future:
How will knowledge of where a majority of ovarian cancers originate impact women at increased risk?
How might this research help in the development of an early detection test?
What is the impact for women diagnosed with ovarian cancer?

In this video, Dr. Drapkin discusses how this research is giving high-risk women better choices: 





We hope you can join us on Wednesday, April 10, 2019 at 9:00pm ET (8pm CT, 6pm PT) to learn more about this important research topic.

Dee
#gyncsm co-moderator

PS: New to tweet chats? Tips for taking part may be found here. 
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Wednesday, April 11, 2018

SGO Annual Meeting Research Review and Ask the Doc April 2018

Twenty-four participants shared what they had learned at the SGO Annual Meeting or asked questions about research presented at the meeting during this month's #gyncsm chat. You may find more analytics here. You may find a transcript from the chat here.

We covered a number of different research areas from treatments to survivorship to funding for research.

T1: What were the results of the study comparing minimally invasive surgery (MIS) w/ radical hysterectomy in early cervical cancer. Will the results change practice?

  • "Disease-free survival following minimally invasive procedures significantly lagged behind radical hysterectomies done by open laparotomy," -Pedro T. Ramirez, MD. I found this fascinating.
    • some suggested uterine manipulator use (not assessed in the study), also discussed immature data, early stopping.
    • Any reasons would be speculation. But I think we get bigger tissue margins with open surgery
    • data safety monitoring committee (filled with GYN ONCS) said the study should be stopped
T2: Several studies used targeted therapies to treat #ovariancancer - Which results stood out for you? Were side effects critical in any of the studies?
  • The #PARPi combinations are very exciting - responses and improved outcomes regardless of #BRCA status are encouraging
  • From our Scientific Director, Dr. Deb Zajchowski, “Exciting preliminary results for PARP inhibitors combined with immune checkpoint inhibitors — particularly in platinum-resistant patients.” (@ClearityFnd) 
T3: Which studies presented at the meeting will impact treatment of women with #endometrialcancer #uterinecancer #sarcoma?

  • The combo of everolimus & letrozole was quite successful in #endometrialcancer - this is the 2nd study to demonstrate this
  • Excited re our study (in rodents) of everolimus-eluting IUD pres by @JDottinoMD - could allow pts to avoid surgery in endo ca


  • My friend Matt Anderson, MD, PhD, presented on the genomic profiling of #uterine #leiomyosarcoma from The Cancer Genome Atlas as well as his own lab in Baylor. Data from @ALazarMDPhD was included. This is bigly important for us
  • I was not at SGO but results from the phase 2 trial looking at carbo/taxol vs carbo/tax + trastuzimab (herceptin) in uterine serous CA with Her2/neu overexpression were presented. Improved PFS w/addition of herceptin.
    • Agree... exciting abstract. Several pre-analytical issues that can affect Her2 testing results which will be important to consider for the future
T4: What research on palliative care and survivorship do you think will impact patients lives the most - or that survivors should ask their gyn/onc's about?

  • There was a study that finally measured and estimated rates of post op lymphedema which were much higher than anticipated. If we can measure it we can look for ways to reduce it. 
  •  Overall, I think it has been great to see an increase each year in survivorship studies and talk of long-term care planning and navigators/coordinators. Patients living longer and more emphasis on support.
T5: Once again studies showed less gyn cancer clinical trials and lower funding for gyn cancer research. What suggestions were made to increase enrollment and funding?
  • We MUST advocate for gynecologic cancer funding - write your Congressman and tell them that this funding must be INCREASED!!
  • the photo in this tweet shows how great the need is via @ShannonWestin
  • Outcomes are better for minorities who have access to #clinicaltrials - we need funding to ensure these trials are available 
    • I thought this was an important study. #clinicaltrials are an important part of cancer care. Many in general population still think trials are last resort and consider them "experimental" in a very negative risky way.
  • From our Scientific Director, Dr. Deb Zajchowski, “We need more funding. We also need to get the word out to enroll in the many clinical trials that are already available. There are more than 300 #clinicaltrials that #ovariancancer patients can enter.”
We have several questions/thoughts out there - feel free to now add any additional tweets re: the latest gynecologic cancer research.
  • Here is a link to a study reported at SGO on a vaccine to prevent recurrence in OC https://t.co/phQx2osDcN
  • Can you please tell us a little more about check point inhibitors and what that they’re used for in regards to #Lynchsyndrome cancers
    • Right now - they are FDA approved for any tumor that has MSI (microsatellite instability) - that includes Lynch Syndrome assoc tumors
    • Essentially the MMR in LS makes the cells more susceptible to attack by the immune cells. The checkpoint inhibitors allow the immune system to be more effective.
  • Still on #uterine #leiomyosarcoma: I'm glad the #sarcoma med oncs talked about the many lines of chemo -- I can think of at least 6 -- they might give. Some gyn oncs offer fewer
  • I was very surprised that chemo for early stage endometrial Cancer didn’t improve outcomes. Especially after last years ASCO when it was discussed that it may replace radiation.
  • Great video to share (from SGO) on clinical trial basics! https://t.co/UWjBqxQ584
  • There was a study that finally measured and estimated rates of post op lymphedema which were much higher than anticipate…
Additional resources mentioned during the chat may be found below. 

Patients and caregivers are invited to continue our discussion on the Smart Patients platform at  https://www.smartpatients.com/partners/gyncsm

Join us next month on Wednesday May 9,2018 at 9pm ET for our chat on Palliative Care - When and Why? with guest Christian Sinclair @ctsinclair (#hpm). 

See you then, 

Dee
#gyncsm Co-founder


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