Wednesday, July 8, 2020

July 8, 2020 - Gyn Cancer Research News and Reading Scientific Posters Chat

This month's chat was organized in two parts. During the first part we discussed gynecologic cancer study results presented at this year's virtual ASCO meeting. During the second part we welcomed Kimberly Richardson @KDRichardson924, creator of the Survivors Advising Scientists Educational Program (SASEP), as well as the SASEP Program presenters @UICMSTP, graduate students Benjamin Gordon, Tova Bergsten and Casey Blaha from the University of Illinois at Chicago as they shared with our community How to Read Scientific Posters using two posters from the virtual ASCO Annual Meeting. We had 26 participants and 1.7 million impressions. You may read the transcript here and the analytics here

Some highlights of the chat are provided below. 


T1: Whether or not a woman should have a second surgery for ovarian cancer continues to be debated. What does the most recent research suggest and what do women need to consider?
  • Two presentations at #ASCO20 - Complete Cytoreductive surgery is crucial in improving outcomes (Desktop III and SOC Studies) Patients with surgery and incomplete resection had worse outcomes (median 28.8 months). https://meetinglibrary.asco.org/record/185438/abstract
  • Three trials have looked at this question all with slightly different patient enrollment in different environments. To distill the results the decision for secondary cytoreduction for women with #ovariancancer comes down to careful patient selection.

T2: PARP inhibitors took center stage again in the care of women with ovarian cancer. With one study reaching its goal and one that did not, what do women need to know?
  • The final overall survival (OS) results from SOLO2/ENGOT-ov21 maintenance olaparib study showed an improvement of 12.9 months in median OS vs placebo. 1/2
  • These patients all had germline BRCA mutations and only 38% of the patients receiving placebo went on to receive a parp later. This leaves HUGE questions about the sequencing and timing of parp inhibitors for women with #ovariancancer.
  • 2/2 A phase III PARP study compared olaparib to cediranib /olaparib to standard platinum chemo (SOC) in recurrent platinum-sensitive #ovca . Cediranib /olaparib demonstrated similar activity to SOC in relapsed platinum -sensitive ovca but did not meet the primary endpoint of improved progression free survival.
In other news from ASCO, the #gyncsm community had an online #ASCO2020 abstract: Abstract e14113 Social media and gynecologic cancers: The impact of Twitter https://meetinglibrary.asco.org/record/187383/abstract .

Note: In the coming months, we’ll have the chance to discuss more gyn cancer research as we chat about endometrial cancer (Aug 12) and rare ovarian cancers (Sept 9). 

Moving on to the Survivors Advising Scientists Educational Program (SASEP) . 

T3: What is the "Survivors Advising Scientists Educational Program”? What led to its development?
Survivors Advising Scientists is a program initiative I [Kimberly Richardson] developed while participating in NCCS ELEVATE Ambassador Program last year.


T4: What topics do the SASEP modules cover? Where can patients go to learn more about the program? 
  • The topics are designed to introduce important scientific concepts so cancer research advocates and patients can participate in scientific dialogue and important decision making. The modules cover the following:
  • 1.Scientific Hypotheses 2.Components of a Hypothesis 3.Exp. Variables 4.Confounding Variables 5. Exp. Errors 6.Stat Significance 7.Types of Clinical Studies 8. Bias and Randomization 9. Read Scientific Poster 
  • Additionally, we are currently looking for more content ideas. Please email us at SASEP@UIC.edu for any suggestions. You can access the videos here: https://sasep.typeform.com/to/kyOKes
T5: Let’s talk about the module on “How to Read a Scientific Poster”. What are the main points patients/advocates should consider when reading a scientific poster presented at an annual meeting like ASCO or SGO?
  • the direction in which sci. posters are typically read is from top to bottom, left to right. Some conferences will have requirements that all research presenters must follow. For ASCO’s conference, all main findings must be placed in the middle of poster.
  • The next and one of the most important pieces of a poster is the hypothesis which is usually found in the top left corner. The hypothesis is the an educated guess the researchers use to try to answer a scientific question.
  • Some of the more interesting parts of a poster are the results or data, which are usually found in the center column/s of a poster. This section shows readers what information the researchers gathered/learned as a result of their experiments.
  • If you’re overwhelmed reading a poster, another good place to look is the conclusions section, usually found in the bottom right corner (for ASCO, in the center column). This area summarizes the results of the study and may point out what is left to do.

T6: This poster from #ASCO2020 reports on the low rate of BRCA testing for patients with ovarian cancer. 

Using this as an example, can you walk us through how an advocate/patient/survivor could read and understand it?
  • Some posters may be intimidating with jargon and lots of numbers/data. But following simple steps can help break concepts down so you can begin to understand the “big picture” of the study.
  • Title: the title of this poster makes it clear the topic is about the low rate of testing for BRCA1/2 mutations in ovarian cancer patients, but we need to read a little more to get more information.
  • In this poster, the next big section that catches your eye is the paragraph in the center. You would most likely read this summary first to get the “take home” message, then continue to read the poster normally.
  • Background: this section gives a brief introduction to ovarian cancer and the two genes of interest. Here we learn these genes increase the risk of likelihood of developing ovarian cancer.
  • Methods: this section has a flow chart explaining the process of data collection. This is not the most important part if you’re reading to find results, but it can provide a lot of information about how well the study was designed.
  • Method 2: You’ll also see a demographics table on the far right of the poster. This information could be considered part of the methods, since it is describing the body of patients included in the study.
  • Results: this section is in the bottom left - which is a little unusual but looks like it was done for spacing purposes. There is also a large results box in the middle of the poster - designed to draw attention to the “take home” message quickly.
  • Discussion: this section is describing the results or conclusions of the research. This is also sometimes called “conclusions”, but it is very important because it shares results and puts them into context.
  • Discussion 2: This poster shows that only a very small percentage of patients with ovarian cancer had a documented test for BRCA1/2 mutation, even though guidance suggests that all patients should receive this test.
T7: Here is another poster from #ASCO2020 discussing early-line treatment for endometrial cancer. 

Using the tips from your module, what are the key points to learn from this poster? 

  • Title tells us that a drug combination (Lenvatinib + Pembrolizumab) is being tested as early treatment for endometrial cancer. If these therapies r unfamiliar to you, you can ask the presenter for more information or look them up on google scholar or pubmed.
  • The goal of the study is to evaluate the safety and efficacy of this drug combination. They use the word “post hoc” analysis, which means the clinical trial has already been performed and now they are analyzing the data.
  • Post-hoc means they are not stating a hypothesis as they would if they were currently designing the clinical trial (eg, combination therapy will lead to increased overall survival compared to standard chemotherapy in patients with endometrial cancer).
  • Methods: Here we see the researchers are analyzing data from KEYNOTE clinical trial (NCT02501096). The “overall population” is the larger group of patients with endometrial cancer. Subgroup 1 is small subset of those patients who haven’t received much treatment
  • Methods 2: This study is using post-hoc (after trial completion) analysis to compare the effect of the treatment in subgroup 1 and the overall population to determine if it would work as an early-line treatment.
  • Results: Efficacy is the key word for this poster (bottom left corner) - did the drug combination being tested work? U can see that 36% of the overall population had a response to the treatment - or the treatment worked to improve disease state in 36% of patients
  • Safety: Since this poster is about a clinical trial, this section is important to include information for both clinicians and patients. The safety profile of the subgroup population matches the overall population and no new safety concerns were found.
  • Conclusions: The conclusions are found right in the middle in large font - designed so that they are easy to find. 
  • Conclusions 2: The conclusion is that the treatment (lenvatinib + pembrolizumab) seems to work in this study for this population (advanced endometrial cancer that is not MSI-H or dMMR) as a method of early-line treatment.And 26% of patients in subgroup 1 responded.
We were honored to feature one of these great new SASEP modules during this chat. Thank you Kimberly Richardson, Benjamin Gordon, Tova Bergsten and Casey Blaha for taking the time to join us and share such helpful information with the #gyncsm community. You may find the modules at https://sasep.typeform.com/to/kyOKes

Save the date for our next #gyncsm chat Wed Aug 12 at 9pmET on Endometrial Cancer - Risks, Symptoms, Treatment.

See you then - Stay safe. 

Dee 
#gyncsm Co-founder

Thursday, July 2, 2020

Gyn Cancer Research News and Reading Scientific Posters Chat July 8


During this month's #gyncsm chat (Wednesday, July 8, 2020 at 9pm ET) we will discuss gynecologic cancer research presented at this year's SGO and virtual ASCO meetings as well as learn about How to Read Scientific Posters.

To lead the second part of the chat, we are pleased to have Kimberly Richardson @KDRichardson924, creator of the Survivors Advising Scientists Educational Program (SASEP), as well as the SASEP Program presenters @UICMSTP, graduate students Benjamin Gordon, Tova Bergsten and Casey Blaha from the University of Illinois at Chicago joining us.


They will share information about SASEP and then provide participants with tips on how to read a scientific poster. We'll use posters from #ASCO20 that provide gyn cancer information as examples.

We hope you can join us on Wednesday, July 8th at 9pm ET (8pm CT, 6pm PT) for this informative chat.

Topic Questions
T1: Whether or not a woman should have a second surgery for ovarian cancer continues to be debated. What does the most recent research suggest and what do women need to consider?

T2: PARP inhibitors took center stage again in the care of women with ovarian cancer. With one study reaching its goal and one that did not, what do women need to know?

T3: What is the "Survivors Advising Scientists Educational Program”? What led to its development?

T4: What topics do the SASEP modules cover? Where can patients go to learn more about the program?

T5: Let’s talk about the module on “How to Read a Scientific Poster”. What are the main points patients/advocates should consider when reading a scientific poster presented at an annual meeting like ASCO or SGO?

T6: This poster from #ASCO2020 reports on the low rate of BRCA testing for patients with ovarian cancer. Using this as an example, can you walk us through how an advocate/patient/survivor could read and understand it?

T7: Here is another poster from #ASCO2020 discussing early-line treatment for endometrial cancer. Using the tips from your module, what are the key points to learn from this poster?

Dee
#gyncsm co-founder

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

Wednesday, May 13, 2020

May 13, 2020 Chat - Side Effects of Surgery / Radical Hysterectomy

Tonight's chat topic was Side Effects of Surgery / Radical Hysterectomy. We welcomed twenty seven participants, some regulars and a few new to chats, to discuss this important topic. You may read the complete transcript here and find analytics here.

Below you will find some highlights for each topic question. Resources can be found at the end of the post.

T1: Most gyn cancers are treated with surgery. What types of surgeries can women diagnosed with, or at high risk for, the different gynecologic cancers expect?

T2: What are the differences between Minimally Invasive Surgery (MIS) and Open surgery? How does the type of surgery impact outcomes and side effects?
  • Minimally invasive surgery is either laparoscopic or robotic surgery. It means small incisions, less blood loss and fewer complications. But this has to be balanced with long term oncologic outcomes. We still want patients to get the best possible cancer surgery. #gyncsm
  • Yes patient factors must be considered as well - prior surgery, location and size of the tumor. Surgical plans should be individualized. #gyncsm.
  • There is now a lot of data supporting that for most women with #cervicalcancer minimally invasive surgery leads to worse survival - the evidence is from many sources including clinical trials and population data. #gyncsm.
  • Some surgeons are still advocating for MIS for cervical cancer and in certain cases this might still be an appropriate decision. But this requires shared decision-making. And of course if your surgeons recommendations don't sound right get a second opinion! #gyncsm
  • T2 balancing long term goals of surgery
  • T2: There are no foolproof tests to detect uterine #leiomyosarcoma before surgery. Women face greater risk of metastasis & death if they have MIS with power morcellation. Less research on tumors cut by hand. #gyncsm

T3: What are some important things for women to consider before surgery?

T4: Many women experience early menopause after having their ovaries removed during surgery. What are ways to manage menopause symptoms?
  • I've heard too many stories of women who were completely unprepared for surgical menopause and their care team hadn't really covered it. Really important also in previvor care and decision making.
  • T4. Ice packs & a sense of humor #gyncsm
  •  Some women may still be candidates for menopausal hormone therapy even after a gyn cancer diagnosis if their ovaries have been removed. It's worth discussing with your doctor.
  • surgical menopause- very critical/should be a very important part of consent process; address what to expect and how you could address specific symptoms ex. sexual function; vasomotor/hot flashes; etc; medical vs non medical interventions depending on surgery indication
  • T4: Some women may be able to take hormones, for those whom hormones are not safe management can be difficult. Some antidepressants can help, accupuncture may be worth a try and no one ever likes this answer but... exercise may be helpful. #gyncsm
  • elimination of foods. Having a fan bedside to help with hot flashes. Air conditioning. Layered clothes. Acupuncture possibly.
  • 4: Women with low-grade endometrial stromal #sarcoma may go on Megace or other drugs to control their hormones.
  • T4: #gyncsm ; great info for women and cancer ;menopause ; sex and cancer; and much more ⁦@drmonicaxmas⁩ ⁦@WomanLab_⁩ ⁦@stacylindau⁩ ; love these resources , MDs and team! https://womanlab.org/menopause-can-be-complicated-non-hormonal-treatments-shouldnt-be/
  • T4: A lot of women who have radical hysterectomies will need to use dilators to keep their vaginas from shrinking. Don't have sex if it's painful (unless you're into that). Lubricant is your friend. #gyncsm

T5: What are some of the physical side effects, both short-term and long-term, from surgery related to gyn cancers? What methods and therapies are recommended for dealing with these side effects?
  • #gyncsm numbness, bleeding, infection, lymph edema, bowel obstruction, dietary concerns, One can recommend Palliative Care, medication, nutritional consult, spiritual, and find a social worker to navigate, facilitate and organize.
  • Yes, palliative care really important. These are just the surgery side effects... also can be dealing with chemo, radiation, and more...
  • There are some pelvic Physical therapy exercises that can help . I had GI issues for a long time after my surgery. Diet changes ( higher fiber) helped me with that. #gyncsm
  • T5: Incontinence is my very least favorite side effect.
  • Lymphedema can be quite difficult to manage and is typically worse for women who have had pelvic surgery and radiation. physical therapy can help but is a commitment
  • T5. INSOMNIA also #gyncsm
  • many patients have sexual side effects (low libido, painful intercourse) but patients often feel uncomfortable discussing this with their physicians. a physical therapy referral for this can be very helpful. #gyncsm
  • T5. I like https://lmsdr.org/ for info on #leiomyosarcoma, including gyn primaries. I think it's harder to get info on other gyn sarcomas. But women can turn to peer support programs such as @fflcancersprt, @ImermanAngels & @MDAndersonNews' MyCancerConnection.
  • T5: For those of us who had vaginal cancers and were single, the thought of dating can be daunting. Now that I'm 61, however, I find men are less picky.

T6: What are some of the emotional side effects from surgery related to gyn cancers?  What are some helpful resources and tips for these?

T7: Have there been impacts from COVID-19 on surgeries - timing, type recommended, length of surgery, special precautions, other impacts?
  •  I know that a lot of prophylactic surgeries were either cancelled or delayed. #gyncsm
  • T1 In Maryland, many surgeries were delayed or postponed due to the crisis. #gyncsm
  • A7: I have not personally been affected but know some who have had their preventive surgeries (i.e., BSO) delayed. Also, others have told me their fertility preservation has been delayed/postponed due to COVID-19. #gyncsm #ayacsm #familyplanning #HealthComm

We end all our chats with TIL - Today I Learned. Here are a few from tonight.
  • TIL: About lymphedema after GYN cancer surgery, the long term physical and emotional side effects of surgery, and once again the lack of communication with some about early menopause. I appreciated all of your thoughts so much tonight! #GYNCSM
  • TIL that we as health professionals have some work to do to make sure that women are fully aware of the long lasting effects surgeries (and other treatments) may have. #gyncsm


There will be no #gyncsm chat in June. Save the date for our next chat Wednesday July 8, 2020 at 9pm ETWe also invite you to check out these other great healthcare conversations happening on twitter: http://gyncsm.blogspot.com/2019/01/looking-for-cancersocialmedia-chat.html #bcsm #btsm #lcsm #mmsm #ayacsm #PANCChat #hpm #hcldr #cureconnect #wegohealthchat #patientchat


Wishing wellness and safety for all!

Dee and Christina 


RESOURCES

Foundation for Women’s Cancer @GYNcancer Postoperative pain management https://www.foundationforwomenscancer.org/wp-content/uploads/2019-FWC-Patient-Education-Handout-Postoperative-Pain-Management-10.21.19.pdf 

@BasserBRCA preparing for surgical menopause. https://www.basser.org/news-and-media/blog/2019/23/what-you-need-know-about-surgical-menopause

"Racism in Healthcare Is Putting Black Women's Lives at Risk" https://www.oprahmag.com/life/health/a23100351/racial-bias-in-healthcare-black-women/

@CancerDotNet - cancer surgery side effects https://www.cancer.net/navigating-cancer-care/how-cancer-treated/surgery/side-effects-surgery

Post hysterectomy exercise https://www.livestrong.com/article/396141-what-exercise-can-you-do-after-hysterectomy/ @livestrong

Patients Speak Up About Gynecologic Cancer Side Effects https://www.curetoday.com/publications/cure/2019/womens-cancers/under-the-spotlight-patients-speak-up-about-gynecologic-cancer-side-effects



Friday, May 8, 2020

Side Effects of Surgery / Radical Hysterectomy #gyncsm Chat May 13, 2020



This month the #gyncsm community will be discussing the Side Effects of Surgery and Radical Hysterectomy during our May 13, 2020 (9pm ET) chat. Most gyn cancers are treated with surgery.

Patients with a gyn cancer may have surgery to diagnose cancer, to stage cancer, to remove cancerous tissue or to alleviate side effect caused by tumors. While some surgery requires large incisions, there are also minimally invasive surgeries such as laparoscopic surgeries used for gyn cancers. (Cancer.net)

During Wednesday's chat we will cover the following topic questions:

T1: Most gyn cancers are treated with surgery. What types of surgeries can women diagnosed with, or at high risk for, the different gynecologic cancers expect? 

T2: What are the differences between Minimally Invasive Surgery (MIS) and Open surgery? How does the type of surgery impact outcomes and side effects? 

T3: What are some important things for women to consider before surgery?

T4: Many women experience early menopause after having their ovaries removed during surgery. What are ways to manage menopause symptoms?

T5: What are some of the physical side effects, both short-term and long-term, from surgery related to gyn cancers? What methods and therapies are recommended for dealing with these side effects?

T6: What are some of the emotional side effects from surgery related to gyn cancers?  What are some helpful resources and tips for these?
T7: Have there been impacts from COVID-19 on surgeries - timing, type recommended, length of surgery, special precautions, other impacts?

Christina and I look forward to having you join us on May 13th.

(updated 5/13/2020)

Dee
#gyncsm Co-Founder

Wednesday, April 8, 2020

April 8, 2020 Open Mic on COVID19

Thank you to everyone who joined us tonight for our Open Mic chat on COVID-19.

We were happy to have the co-chairs of the SGO COVID-19 Task Force, gyn-oncologists Amanda Nickles Fader, MD (@amandanfader), Joshua Kesterson, MD (@KestersonJoshua), Bhavana Pothuri, MD, MS (@BPothuri) and patient advocate and Task Force member Annie Ellis (@stigetta) join us for this important discussion. 

You may find the transcript here and the analytics here.

We covered a number of different areas related to COVID-19 and the gyn cancer patient experience. 

Concerns and Difficulties  

  • I’m having a really hard time deciding whether to go for my next blood test and then infusion during COVID-19 risk. I skipped one infusion already
  • I am concerned about surgery delays in light of COVID 19
  • Every surgical procedure potentially exposes the patient and a dozen HCW to #COVID19. #PPE is still an issue in many places. And access to testing has been an issue as well.
  • Not too bad since doing chemo gave a taste of isolation. But i miss going outside to stay active 
  • Many lynch syndrome patients get annual tests, especially colonoscopies, so having them put off by even a few months can be stressful 
  • The human connection is so important and what I love about caring for patients. With social distancing, it is challenging. 


SGO Task Force - Guidelines and Care

  • @SGO_org COVID-19 Task Force has been working around the clock to develop strategies for doctors to continue to provide the very best care possible to their patients during these difficult times 
  • Goal is to keep patients safe and in this current crisis, that involves avoiding an infection with no cure. SGO COVID 19 Task Force developing guidelines so no patients left behind/forgotten.
  • The SGO COVID-19 Task Force guidelines are specific for GYN cancers. https://www.sgo.org/clinical-practice/management/covid-19-resources-for-health-care-practitioners/
  • Hang in there! Cancer care is still being prioritized, but changes are being made to minimize patients' risk of exposure - especially important as we recognize that cancer patients may be at high risk for becoming quite ill from COVID-19. 
  • Please understand that you all are very important and we are making the best decisions we can during this time of greater infection risk and increased resource limitations. Thank-you for your patience and understanding #COVID19 #GYNcsm #SGOCOVID19


Treatment / Follow-up Care

  • Depends on how you are feeling and what your treating #MD thinks whether risks are greater than benefit; These are hard decisions and need to be individualized.
  • I think the issue is that we don't know how long this is going to last - and we certainly want to keep you on track for your treatment. It's a difficult decision 
  • Agree they can be stressful, but know it is more risky to come in now for a screening test.
  • Delays in cancer screening and health check ups should only be temporary. Trying to balance risks of medical care with exposures to COVID-19. 
  • Yes in high #COVID burden areas this is the case. But even in these areas we are able to do cases that we deem are necessary. Working hard to maintain care so it does not impact outcomes. 

Telemedicine

  • But telemedicine allow us to keep very close tabs and communicate regularly with our cancer survivors. 
  • Agree, @temkins. Telemedicine is a great alternative to deliver care for our patients and cancer survivors. 
  • Something good has to come out of the COVID crisis and telemedicine and the improved patient access and convenience is going to be one of those positives.
  • Hope we will also see sustainable improvement in accessibility of second opinions with reimbursement for televisits. 
  • Telemedicine is one option but there are different laws/regulations across states 
  • This is important! We are limited in #telehealth by regulations - we need legislators to learn from this issue and expand our ability to provide care across state lines 
  • Language differences are also a challenge; interpreting clinic appointments is often challenging baseline, still need to find more #equitable solutions in order for telemedicine to not create/increase disparities imo 

Disparities

  • As we hear more about the rates of infection/deaths of African Americans with COVID19, I worry we will continue to be excluded from clinical trials due to existing comorbidities.
  • #clinicaltrials are the key to innovation in oncology and enrolling a representative patient population is good science. 
  • I hope this COVID crisis draws attention to the disparities in outcomes for African-Americans as well as based on economic status, geographic location, etc. and serves as a call for equality for all
  • In light of the high mortality rates, the financial health disparities will also become a factor as they will be faced with paying for costs of burial for those without insurance.
  • And no, we shouldn’t wait to address this when it’s all over, as some suggest. We should tackle it now. We should recognize there are certain communities that are in greater need for resources, testing, access now. Should not accept these worse outcomes are inevitable. 

Genetics Counselors

  • Genetic counselors across U.S. have been shifting our clinics to telephone/video & finding creative work-arounds to help patients access recommended genetic testing; we're doing our best to keep everyone safe, but missing in-person support of patients & families 


Support 


Survey 

Patient survey: Any person w/ #ovariancancer #fallopiancancer or #peritonealcancer is invited to complete this survey from research advocate @Stigetta on survivors' experiences during the COVID-19 pandemic. https://www.surveymonkey.com/r/OvcaCV19



Additional resources shared during the chat may be found at the end of this blog. 

Save the date for our next #gyncsm chat: 
Wed May 13, 2020 9pmET .
Topic: Side effects of Surgery

We'll end this blog with Tweets from two participants. 

I want to give the biggest of thanks to all the health care providers and medical staff. You guys are amazing each and every day! In Irish, thank you is “go raibh maith agat” which means “may you have goodness” I wish all the goodness for you! ❤️ 

Please spread the word to stay home to #flattenthecurve #GYNcsm #SGOCOVID19

Wishing wellness and safety for all,

Dee and Christina 


OTHER RESOURCES SHARED:
Covid19 resources for gyn cancer patients: Foundation for Women’s Cancer @GYNcancer
https://www.foundationforwomenscancer.org/news-stories/covid-19/
https://www.foundationforwomenscancer.org/covid-19-helpful-resources/

Questions? Comments? Concerns? for @SGO_org & @GYNCancer? You can leave a post FWC’s Facebook page! https://www.facebook.com/foundationforwomenscancer/

The @SGO_org website is a great resource for #COVID19 
https://www.sgo.org/clinical-practice/management/covid-19-resources-for-health-care-practitioners/ 

Covid19 webinars this week for cancer patients
Join @CancerAdvocacy Thursday, April 9, Noon ET: https://register.gotowebinar.com/register/3253972083140234252 
Join @SHAREing and @GYNCancer on Friday, April 10 at 2pm ET https://register.gotowebinar.com/register/8945691880708190222 #gyncsm

@DrMarkham- What People With Cancer Need to Know
https://www.cancer.net/blog/2020-04/coronavirus-and-covid-19-what-people-with-cancer-need-know on @CancerDotNet

@SHAREing COVID-19 Updates for Gynecologic Cancer Patients
https://www.youtube.com/watch?v=5z4umo0VYLc&feature=youtu.be

@FacingOurRisk has put out some great resources: 
Coping with Hereditary Cancer During the COVID-19 Pandemic
https://www.facingourrisk.org/about-us/about/covid-19.php 
A second helping of stress: Coping with hereditary cancer during the COVID-19 pandemic - register to view https://register.gotowebinar.com/recording/4410816644974202125 

@CancerAdvocacy Coronavirus and Cancer Resources for Survivors 
https://www.canceradvocacy.org/blog/coronavirus-cancer-resources-for-survivors/?mc_cid=d94d24cb7d&mc_eid=14aaa5ca15 

How long is it safe to delay gynecologic cancer surgery? By @RobinsonRossiGO 
https://www.mdedge.com/chestphysician/article/219514/coronavirus-updates/how-long-it-safe-delay-gynecologic-cancer-surgery/page/0/1 

Practicing self-care during the Time of Coronavirus @JBBC for @power4patients
 https://powerfulpatients.org/2020/03/24/practicing-self-care-in-the-time-of-coronavirus-how-to-mind-your-mental-health-and-well-being-during-covid-19/ #gyncsm #patientchat

Livestrong @livestrong Tips and Tools for living with Cancer during Covid-19 
https://blog.livestrong.org/tips-tools-for-living-with-cancer-during-covid-19-7c1ac49ea260?gi=f945388c302f

International Gynecologic Cancer Society @IGCSociety 
https://igcs.org/covid-19/

Here's what the FDA has to say so far re: clinical trials during COVID 19 
https://www.fda.gov/regulatory-information/search-fda-guidance-documents/fda-guidance-conduct-clinical-trials-medical-products-during-covid-19-pandemic?utm_source=&utm_medium=&utm_campaign= 

For AYA’s, check out @ElephantsTea ‘s #COVID19 resource page https://www.elephantsandtea.com/covid-19/
I love @DansHouseofHope, @LacunaLoft, and @MDAndersonNews Cancer 180 program also for additional resources! 

@CancerDotNet Coronovirus info
https://www.cancer.net/blog/tags/coronavirus

OCRA Covid19 info for ovarian cancer patients
 https://ocrahope.org/patients/information-on-covid-19-for-ovarian-cancer-patients/



Saturday, April 4, 2020

Open Mic on Covid-19


With the ongoing global coronavirus pandemic, we decided to "host" an Open Mic on Covid-19 instead of our original April topic about communicating with your health care professionals. We hope to host a chat on that topic later this year.

We know from our interactions on Twitter, Facebook and other patient platforms that gynecologic cancer patients and survivors have concerns about risks and questions about how Covid-19 will impact their care. From delaying a port flush or follow-up scan to delaying treatment. Women are also wondering about clinical trial participation in the ever changing Covid-19 environment.

We are excited that the co-chairs of the SGO COVID-19 Task Force - gyn-oncologists Amanda Nickles Fader, MD (@amandanfader), Joshua Kesterson, MD (@KestersonJoshua), and Bhavana Pothuri, MD, MS (@BPothuri), and patient advocate Annie Ellis (@stigetta), will be joining us on Wednesday, April 8, 2020 at 9pm ET.


Please join us as we gather to share about Covid-19 and those impacted by gyn cancers. Bring your questions and share what's on your mind:
  • What are your greatest concerns surrounding the Covid-19 pandemic?
  • Has Covid-19 impacted your treatment and follow-up care? 
  • Have you used Telemedicine to communicate with your health care provider? 
  • Is being a gyn cancer patient/ survivor putting you at increased risk for Covid-19?
  • Has clinical trial enrollment / participation been impacted during the Covid-19 outbreak? 
  • What measures have you taken to reduce the emotional issues related to the Covid-19 outbreak?
  • Where can you find the best online support and information available for cancer patients related to Covid-19? 
  • What can the #gyncsm community do to help patients and healthcare providers through this difficult time?
We look forward to being able to spend time with each other while sharing important resources. See you Wednesday.

Dee
#gyncsm Co-Founder