December 13, 2017: I've Survived - Dealing with Side Effects and Other Losses

This month, during our chat I've Survived - Dealing with Side Effects and Other Losses, we discussed physical and emotional losses experienced by gynecologic cancer patients and survivors.

We were pleased to welcome a number of new participants among the 26 people who joined us.  You may find our analytics here and a transcript here.

Below are the questions Christina used to guide our discussion along with some sample answers. Please read the complete transcript for all the comments.

T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 

• When I think of losses I think friends lost to OC, the organs that allowed me to have my children, my ability to recall words quickly.
• T1 loss of control, loss of carefree living, loss of ability to assume things are ok even if it’s a false assumption
• T1: For me, it's the faces of ovarian cancer survivors I have worked with over the years who are no longer here to advocate.
• Cancer is a string of losses - of many kinds, so of course, there is lots of grieving as well. How could there not be?

T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.

• T2 Physically- organs: repro, vagina, bladder, portions of sm & lg intestine, left kidney, nephrosis of rt kidney, gall bladder, thyroid,
• T2 Feeling the toes in my left foot, My thick hair ( after losing it twice it is thin) 
• T2 whatever physical losses, care team must take seriously their effects on function and quality of life 
• And it seems that physical losses tend to change how we see ourselves socially, emotionally...

T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 

• When you participate in disease communities, loss comes with it... And it is okay to step away from time to time and recharge
• T3 A year after my recurrence I lost 4 friends from my support group. I was devastated, guilty, and scared of recurrence. Speaking to the Social worker helped. She gave coping skills.
• T3- Yes. I have helped women as mentor locally and distance & have spoken at multiple services. Having been diagnosed as 'terminal' this has impacted me terribly, major SURVIVOR'S GUILT!!!

T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 

• It’s mind-blowing that many doctors avoid talking about fertility & sexual health. We are all adults. There’s no room for stigma, taboos. Patients need answers to pressing questions & reali life concerns.
• T4- Intimacy does NOT require being physical. Have not had 'sex' in 7+ years. But this does not mean we've not been intimate. Be adventurous. Find joy in the simplest things, a soft touch, kissing, etc. If done properly, partners can find MORE INTIMACY without sex.
• T4: Even for the tough things, good to know there are lots of resources out there when you are ready. Being open to talking about it first step..
• many of my brca+ friends who've had ooph talk about painful intercourse/vaginal dryness and feeling a loss of sexuality. Luckily they've worked with their providers to overcome those hurdles

T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 

• All of them.
• T5: As we learn more about all of the losses, research has to focus on how we support women to LIVE fully despite the loss.
• T5: The goal is to have more cancer survivors, but we have to plan for how to support them as well.
• Also more scientific research to bring therapies from bench to bedside.
• T5: I'd also love to see more research surrounding getting ahead of neuropathy. Chemo nurses have tips but nothing universal

Please scroll down to see a list of Resources shared during the chat. 

You may continue to discuss these questions with us on the Smart Patient Platform (https://www.smartpatients.com/partners/gyncsm). 

Mark your calendar for our first chat of 2018 on January 10th.  We will discuss Caregivers - their needs and wants with guest Lauren Hand, Gynecologic Oncology Fellow, Magee-Womens Hospital of UPMC.

We wish everyone Happy Holidays! See you in 2018!

Dee and Christina

Founders #gyncsm

RESOURCES

Nancy's Point There Will Be Tears at Christmas http://nancyspoint.com/will-tears-christmas/

Cancer rehabilitation @cancerDotNet https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/rehabilitation

Renewing Intimacy & Sexuality after Gynecologic Cancer   http://www.foundationforwomenscancer.org/wp-content/uploads/Sexuality-Brochure_Final.pdf

Women's Guide to Sexuality During & After Cancer Treatment

https://www.oncolink.org/support/sexuality-fertility/sexuality/women-s-guide-to-sexuality-during-after-cancer-treatment

@cancdotnet Managing menopause and side effects from treatment 
https://www.cancer.net/blog/2016-08/survivorship-after-gynecologic-cancer-managing-menopause-and-treatment-side-effects

In Shock  by Rana Awdish (book)

Society for Participatory Medicine @S4PM (organization)

Chemo Induced Peripheral Neuropathy - Participating in a Clinical Trial

http://womenofteal.blogspot.com/2017/12/chemo-induced-peripheral-neuropathy.html

December '17 Chat: I've Survived - Dealing with Side Effects and Other Losses

On various social media platforms we have heard women diagnosed with gynecologic cancers discuss the difficulties they have after diagnosis. They ask: When will I feel less tired? When will my hair grow back? When will the numbness in my hands and toes stop? When will I feel comfortable being intimate? Or they will share that they feel sad because they are unable to have children or because the friend they made during chemo has passed away. And others ask why they feel so isolated when all around them family and friends are happily celebrating the holidays. 

We will discuss these physical and emotional losses during this month's #gyncsm chat, I've Survived - Dealing with Side Effects and Other Losses on Wednesday, December 13, 2017 at 9pm ET. We welcome all those impacted by gyn cancer, wherever you are in your experience, along with previvors, caregivers, loved ones, advocates, healthcare professionals and those impacted by other cancers and serious illness.

We will use the following questions to guide our discussion:

T1: When you think of the losses you’ve experienced related to gynecologic cancer, what are the first things that come to mind? 

T2: What physical losses have you experienced? Have you talked to your provider about them? Pls share any tips that have helped you.

T3: Has the death of women with a similar diagnosis affected you? What tactics do you put into action to deal with losses of friends and family? 

T4: Women diagnosed w/ gyn cancers have said the loss of sexual intimacy has been difficult for them. What advice do you have for others? 

T5: What areas of loss (physical, emotional, social or otherwise) do you think need more research? 

We look forward to you joining us at 9pm ET on Wednesday, December 13th. 

Dee

#gyncsm Co-founder

We are Grateful

During this Thanksgiving Holiday we are especially grateful for our health moderators-  Dr. Rick Boulay, Dr. Merry Markham, Dr. Shannon Westin and Dr. Ann Becker-Schutte as well as our supporters Dr Don Dizon, Dr Matthew Katz, SGO,  and Iamcervior (Tamika Felder). Our community appreciates the sharing of your time and talents with all of us.

Dee and Christina
#gyncsm co-founders

Nov 8, 2017 #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we put the spotlight on Cancers of the Uterus. We discussed risk factors, symptoms and treatments of endometrial / uterine cancers as well as uterine sarcomas. 

We were pleased to have 24 participants join us including the Peach Society an organization devoted to raising awareness of endometrial cancer. 

You may find a complete transcript here and more analytics here. 

The following are some sample responses to out topic questions. You may find additional resources shared with the community at the end of the post. 

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role? 

• Risk factors for uterine cancers from @cancerdotnethttps://t.co/wptvJ7lIGE
• T1: uterine/endometrial cancer risks include: Age, obesity, reproductive history, hormone therapy, as well as genetics
• T1: #endometrialcancer is the malignancy most closely associated with obesity. Of course genetics #Lynch can play a role as well.
• About 3% of endometrial cancer is due to a hereditary cause, called Lynch syndrome. If you have a family history of endometrial and colon cancers,you may want to meet w/ a Genetic Counselor to learn more  
• T1: some of the genetic links are Lynch syndrome (up to 60% risk), Cowden syndrome (up to 30% risk), and a small risk with PJS
• All of these factors increase systemic estrogen which is implicated in the most common types of #endometrial cancer. 

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

• T2: Any vaginal bleeding after menopause is uterine cancer until proven otherwise.
• T2 Via Canadian Cancer Society Signs and symptoms http://www.cancer.ca/en/cancer-information/cancer-type/uterine/signs-and-symptoms/?region=on&utm_content=buffere910b&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer
• @OncLive: Dr. Haldorsen on the Role of Imaging in the Diagnosis of Endometrial Cancer  http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer
• My main symptom included abnormal bleeding.

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects? 

• @CancerDotNet website : surgery/radiation/ chemotherapy https://www.cancer.net/cancer-types/uterine-cancer/treatment-options
• T3 Most are treated surgically with up to 50% receiving radiationa as well. 10-20% receive chemotherapy.
• T3: We discussed radiation oncology during our July 2017 #gyncsm chat - recap and resource links: http://gyncsm.blogspot.com/2017/06/radiation-oncology-what-is-it-when-is.html
• Post treatment side effects are related to the type and intensity of treatments used
• vaginal brachytherapy is a kind of radiation treatment

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

• Sarcomas are more rare, and often more aggressive. They often start in the muscle tissue of the uterus
• T4: Uterine Carcinosarcoma (formerly called MMMT) - info: http://gcsproject.org/carcinosarcoma-facts/
• T4: Leiomyosarcoma is a rare type of uterine sarcoma.
• T4: Endometrial Stromal Sarcoma - Info: http://ess-sarcoma.com/
• T4 : Brittany Sullivan’s Story w/ Sarcoma https://connection.asco.org/magazine/society-member-news/conquering-sarcoma-clinical-research-doctor-and-her-patient-are-paving

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

• T5: For all the gynecologic cancers, @GYNCancer (The Foundation for Women's Cancer (FWC)) had great guides and resources.
• T5: Resource | Foundation for Women's Cancer (2017): Endometrial Cancer - Your Guide http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Endometrial-Cancer-Your-Guide-website.pdf
• For support some great organizations like @CancerSupportHQ and for one on one support @CancerHopeNet are two I would recommend.
• Short overview of uterine cancer via @gyncancer http://www.foundationforwomenscancer.org/category/blog/uterine-cancer/
• @Peach_Society: You can get more information at http://www.peachsociety.net/ 

Please join us next month on Wednesday, December 13, 2017 (9pm ET/ 8pm CT / 6PM PT) for a chat on  I've Survived - Dealing with Side Effects and Other Losses

Wish all the members of our community a very Happy Thanksgiving!

See you in December. 

Dee
Co-founder #gyncsm 

RESOURCES

@MayoGynecology video obesity and endometrial cancer https://t.co/rJcT0ryuRL

Peach Outreach symptom cards, visit: http://peachoutreach.com/symptomcards/

Imaging and endometrial cancer diagnosis http://www.onclive.com/conference-coverage/esgo-2017/dr-haldorsen-on-the-role-of-imaging-in-the-diagnosis-of-endometrial-cancer

Nov #gyncsm Chat: Spotlight on Cancers of the Uterus

This month we will be putting the spotlight on Cancers of the Uterus or Cancers of the Womb as it is called in the United Kingdom. We will discuss risk factors, symptoms and treatments of endometrial / uterine cancers. We will also discuss uterine sarcomas and how they differ from other cancers in presentation and treatment.

Guiding our discussion will be the following Topic Questions:

T1: What are the risk factors for #endometrialcancer #uterinecancer? Do genetics play a role?

T2: How are cancers of the uterus diagnosed? What are the signs and symptoms and, if diagnosed, did you experience these?

T3: What treatments are used for #endometrialcancer #uterinecancer? What are the common short and long term side effects?

T4: How do uterine sarcomas differ from other endometrial/uterine cancers? What are the types? Differing symptoms and treatment?

T5: Are there any special support services for cancers of the uterus? Where can people learn more? 

You will find helpful information on this month's topic in a booklet produced by the NCI What You Need to Know About - Cancer of the Uterus. 

We look forward to you joining us on Wednesday, November 8, 2017 at 9pm ET (8pm CT, 6pm PT).

Dee
#gyncsm Co-founder


Related Chats:
Radiation Oncology - What is is? When is it used? 2017
You never heard of Primary Peritoneal Cancer and Gestational Trophoblastic Disease? 2017
Gyn Cancer Awareness Month and Spotlight: Uterine and Endometrial Cancers 2015
 

Oct 11, 2017 #clinicaltrials - How have they changed.

We were very pleased to have ASCO, American Society of Clinical Oncology (@ASCO), join us to discuss the importance of clinical trials and their TAPUR Study as part of our chat on #clinicaltrials. This month's chat participation number was our 4th largest ever with fifty-one participants.

You can find the complete transcript here and analytics here.

To provide you with an idea of what our chat discussion was like, below you will find a sampling of the answers to our questions.

T1: What role do #clinicaltrials play in cancer treatment advances? What are some of the key trial design changes in the past 5 yrs?

• T1: #Clinicaltrials are key to helping us better prevent & detect cancer, find new & better treatments, & manage side effects
• T1: New trial designs let us study multiple cancers/treatments at the same time & learn which therapy works best for each patient
• T1: It's important for patients to understand that #clinicaltrials are NOT the treatment of last resort.
• T1: New trial design: "basket trial" offer single treatment for all cancers with specific biomarker (like ROS1 fusions)
• T1: "Umbrella" trials have multiple therapies for one type of cancer (ie ovarian) - the arm may be chosen based on molecular testing
• Immunotherapy is definitely trending as a treatment for many types of cancer and it is only in its infancy. Exciting!
• Another non- randomized Trial is the precision medicine trial know as NCI-MATCH Trial

T2: What is TAPUR? Why did @ASCO develop this trial? Who can participate? What makes TAPUR different from other trials?

• T2: #TAPUR stands for the Targeted Agent and Profiling Utilization Registry Study and is our first clinical trial ever
• T2: The study matches pts w/ targeted therapies based on tumors’ specific genomic profiles 
• http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/what-tapur-study
• T2: Our CMO @rschilsky and Past Pres. @DrJulieVose explain why ASCO developed the TAPUR study in this video: https://t.co/j9qEuIY3tY
• T2: TAPUR is for pts >12yo w/ adv. cancer & at least 1 genomic alteration targetable by a study drug. More: https://www.tapur.org/patients
• T2: TAPUR is designed to include a broader patient population than most trials & to mirror real-world clinical practice
• T2: Check out the study website https://www.tapur.org/ & FAQs https://www.tapur.org/node/31 for more details! 
• T2: TAPUR is an option for patients to access targeted drug that is approved for a different cancer than theirs
• T2: For example, patient with ROS1+ cancer that started in colon can get ROS1 targeted drug approved for lung cancer

T3: What are Patient Reported Outcomes (PRO)? What progress have you seen on ensuring that trials meet patients' needs/interests?

• T3: PROs are anything reported directly by the patient, like symptoms or emotions. They reflect how patients feel & function
• T3: PROS - patient reported outcomes help determine the impact novel treatments in a clinical trial have on #QOL (quality of life)
• T3: More trials are incorporating PROs so outcomes can be measured against pts’ needs/interests https://am.asco.org/daily-news/rise-patient-reported-outcomes-oncology
• T3: Research has shown that when patients self-report symptoms, they have better outcomes https://t.co/cjl8npOxVE
• Self-reporting symptoms can serve to make patients feel more involved and they may be more open to sharing symptoms. This is great!
• Critically important to include & capture. Preferred Dr outcomes vs patient outcomes sometimes don't align

T4a: Have you been involved in a #clinicaltrials?

• T4 my brother was in a clinical trial for stage 4 colon cancer. It looked at EGFR+ drugs +/- avastin
• T4a: My cancer progressed after two different lines of chemo/rads. Targeted therapy clinical trial had me NED at first scan!
• I've participated in some interview studies and am signing up for PROMPT re: genetic variants related to cancer. 
• I was in a phase 1 on initial DX for OC. I also have - or rather my tumor tissue has been in a few other trials
• I have been involved as an investigator in #clinicaltrials for years! Have never participated in one - but I would…
• T4a gathering tests/labs to begin immune therapy trial next week PPC 3c

T4b: If yes, what benefits or drawbacks did you experience? If no, what were some of the reasons? Were trials offered to you?

• Drawbacks of trials: hard to find "best" trial for you, may require travel & time away from family, varying level of risk
• T1b: Benefits of trials: receive AT LEAST standard of care, see top cancer docs, might help future patients as well
• my brother did well on trial, extended his life. trial helped clarify treatment. Brother also saw altruistic benefits
• T4b not offered. Have asked onc about using AI to prevent recurrence. Answer: not studied. Me: R U studying? Ans: no.
• A lot of doctors mention only the #clinicaltrials at their hospital.
• Patient communities continue to be one of the best places to find out about trials. There are groups trying to make it easier
• Because of #sarcoma & gynonc silos, women with sarcoma may not hear about trials run by different docs.

T5: Per @SGO_org, there is a crisis in gyn cancer trials. How can #gyncsm support research and encourage participation in #clinicaltrials?

• T5: #gyncsm can continue great advocacy work and spread the word about the benefit of #clinicaltrials
• T5: Educate yourself & share info with others! Online patient communities & chats like this one are a great start
• T5: Find ways to help more #gyncsm patients get molecular testing and join "basket trials" for any solid tumor type.
• Resource | Gyn Trials Crisis Fact Sheet from @SGO_org https://www.sgo.org/wp-content/uploads/2012/09/SGO-Clinical-Trial-Crisis-FINAL.pdf
• T5 @CancerDotNet has great resources on clinical trials: http://www.cancer.net/research-and-advocacy/clinical-trials
• T5: Call your congress person.
• T5: Contact your lawmakers & urge them to support research by increasing funding for @NIH and @theNCI
• T5: Consider having your #gyncsm tumor undergo broad genomic testing to help researchers identify targetable genomic drivers.
• @ClearityFnd can help with tumor profiling for #ovariancancer
• @SGO_org working on a #gyncsm specific #clinicaltrial search engine that we hope will simplify the process

We appreciate the insights and knowledge of those who participated in tonight's chat. And we hope as a community we will continue to educate women and their caregivers about clinical trials.

Additional resources from the chat are shared below. 

We hope you will join us on November 8, 2017 at 9:00pm EST for our chat on Endometrial and Uterine Cancers. See you then.  

Dee

#gyncsm Co-founder

RESOURCES:

Video | Understanding Gynecologic Cancer Clinical Trials from @GYNcancer
https://www.youtube.com/watch?v=UFGb8nQkE8c&feature=youtu.be

Understanding Clinical Trials - Your Guide from @GYNcancer
http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Clinical-Trials-Your-Guide-Brochure-web_updated.pdf
 
Diversity in Trials 
http://www.cancertodaymag.org/Summer2017/Pages/A-New-Look-for-Clinical-Trials-Diversity.aspx

ASCO guide: new trial designs & precision medicine
http://www.asco.org/research-progress/clinical-trials/clinical-trial-resources/clinical-trial-design-and-methodology

ASCO Broadening Trial Eligibility Criteria to Make Clinical Trials More Representative
http://www.asco.org/research-progress/clinical-trials/clinical-trial-eligibility-criteria 

Designing trials for adolescents 
http://www.cancertodaymag.org/Summer2017/Pages/More-Options-for-Adolescents-in-Clinical-Trials.aspx

NCI-MATCH info
https://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/nci-match

TAPUR
https://www.tapur.org/

About TAPUR on @cancerdotnet 
http://www.cancer.net/navigating-cancer-care/how-cancer-treated/clinical-trials/what-tapur-study

The National Quality Forum report on PROs
https://www.qualityforum.org/Projects/n-r/Patient-Reported_Outcomes/Patient-Reported_Outcomes.aspx

Patient Safety in Clinical Trials | Video by @theNCI 
https://www.youtube.com/watch?v=y7TDwbrD7GQ&feature=youtu.be

Patients’ willingness to participate in clinical trials
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4706669/

Physician and Patient Participation in Cancer Clinical Trials
https://www.ncbi.nlm.nih.gov/books/NBK220370/

Oct 2017 Chat: #clinicaltrials - How Have They Changed

While we have mentioned clinical trials in a few of our recent chats, we have not devoted an entire chat to the topic since 2014. On Wednesday October 11, 2017 at 9pm ET (8pm CT, 6pmPT) we will chat about "#clinicaltrials - How Have They Changed". 

We are happy that ASCO TAPUR Study Administrators will be joining us to discuss the TAPUR Study and how it differs from traditional trials.

Our topic questions are:

T1: What role do #clinicaltrials play in cancer treatment advances? What are some of the key trial design changes in the past 5 yrs?

T2: What is TAPUR? Why did @ASCO develop this trial? Who can participate? What makes TAPUR different from other trials?

T3: What are Patient Reported Outcomes (PRO)? What progress have you seen on ensuring that trials meet patients' needs/interests? 

T4a: Have you been involved in a #clinicaltrial? 

T4b: If yes, what benefits or drawbacks did you experience? If no, what were some of the reasons? Were trials offered to you? 

T5: Per @SGO_org, there is a crisis in gyn cancer trials. How can #gyncsm support research and encourage participation in #clinicaltrials?

In preparation for the chat, you can review this Clinical Trials : Your Guide brochure:  

http://www.foundationforwomenscancer.org/wp-content/uploads/FWC-Clinical-Trials-Your-Guide-Brochure-web_updated.pdf

or view this video provided by the Foundation for Women's Cancer:

Please also see this fact sheet on the Gyn Cancer Clinical Trials Crisis:

We look forward to seeing you on Wednesday the 11th at 9pmET!

Dee
Co-Founder #gyncsm

Related #gyncsm Chats
Clinical Trials Part 1 - 11/2013
Clinical Trials Part 2 - 2/2014