SGO Recap & ASK the DOC - April 8, 2015 Chat

Twenty-nine participants joined us to discuss the latest research news from the SGO Annual Meeting held in March. Contributing to our discussion were Dr. Don S. Dizon and Dr. Ann Becker-Schutte, two of #gyncsm's healthcare moderators, as well as Dr. William Winter (NED the Band), Dr. Shannon Westin, Dr. Matthew Katz, Dr. Stephanie Blank and Lisa M Guzzardi, RN.

You may find the transcript here and analytics here. 

Some of the questions and responses during the chat are below:

T1: Pls comment on the study at SGO you found of most note. Was it OC FANG vaccine/ GOG 213 studies/ other?

T1: Tho study was smalll, FANG vaccine for #ovariancancer is very exciting #immunotherapy has promise - esp in maintanence setting #gyncsm
— Shannon Westin (@ShannonWestin) April 9, 2015

T1 @btrfly12 #gyncsm fang vaccine was for consolidation, i.e. after patients had had a complete response to front line chemotherapy
— Stephanie Blank (@StephanieVBlank) April 9, 2015

T1: GOG213:Avastin 4 platinum-sens #ovariancancer had similar results 2 prior studies - PFS benefit, Near OS benefit - but not quite #gyncsm
— Shannon Westin (@ShannonWestin) April 9, 2015

#gyncsm I was encouraged by the biomarkers found from the ARIEL2 study #sgo2015
— Stephanie Blank (@StephanieVBlank) April 9, 2015

Impact of @theNCI Comprehensive Cancer Centers on #OvarianCancer Treatment and Survival. #gyncsm http://t.co/6b20oHx8tH
— Lisa M Guzzardi, RN (@LguzzardiM) April 9, 2015

T2: Which ovarian cancer research results are most exciting to you? Immunotherapy? Bevacizumab? Parp inhibitors?

T2: Certainly the PARP inhibitor data are very consistent for #ovariancancer - nice results for #BRCA pts as well as select non-BRCA #gyncsm
— Shannon Westin (@ShannonWestin) April 9, 2015

T3: Pls discuss the implications of Dr Joura’s HPV study on cervical cancer & the Circulating Tumor Cells / Bevacizumab study. 

T3: The ability to monitor response to therapy with a blood marker ie "liquid biopsy" is a huge innovation #gyncsm
— Shannon Westin (@ShannonWestin) April 9, 2015

@gyncsm: studies re: BRCA 1) majority of BRCA carriers don’t have family hx 2) most ovarian cancer patients don’t know BRCA status.  

T4: How will these BRCA studies impact surveillance, ed, treatment?

#SGO2015 Ian Jacobs. Most BRCA mutation carriers don't have a family hx of cancer pic.twitter.com/M0Sp798Tqw
— Jurgen Piek (@JurgenPiek) March 29, 2015

@btrfly12 most gyn cancer centers auto referring for genetic testing after ovca dx. #gyncsm
— Don S Dizon (@drdonsdizon) April 9, 2015

T5: Now we open the chat for questions from our participants re: news they heard from the SGO mtg.

• T5: any studies reveal benefit regarding endo ca recvng maint chemo Stage IIIc2 currently NED     A:Nothing yet - we need more maintenance studies for gynecologic cancers
• T5: Question - any radiation oncology news from SGO?   A:there was very little major research on #radonc this year
• T5: Does current genetic testing for #OC include mutations like TP53,RAD51D,etc ? Or just BRCA?Is this imp ?   A:#gyncsm panel testing test for many more mutations. should speak w genetic counselor. some is imp, some for future #sgo2015   
• T5:Thoughts on how should patients/loved ones approach new study findings?   A:Open mindedness and always validate its credibility too

Our next chat will be at 9pm EST on May 13, 2015 . We will be joined by Kelly Mellott (@HelomicsCancer) as we discuss Personalized Medicine Advances for GYN Cancers. 

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


Dee
Co-moderator #gyncsm chat


Resources shared during the chat: 

Highlights from the SGO Mtg
http://www.cancernetwork.com/conference-report/top-highlights-2015-sgo-annual-meeting

@SGO_org paper on end-points in Clinical trials
https://t.co/gNiU6SUICP

Incidental power morcellation of malignancy: a retrospective cohort study. - PubMed - NCBI 
http://t.co/pJOVG9XCfr

Association of Type and Location of BRCA1 and BRCA2 Mutations With Risk of Breast and Ovarian Cancer 
http://jama.jamanetwork.com/article.aspx?articleid=2214084#.VSXXv-chiQ8.twitter

Advanced Cervical Cancer and Circulating Tumor Cells treated with Bevacizumab

http://www.targetedonc.com/conference/sgo-2015/Patients-with-Advanced-Cervical-Cancer-and-Circulating-Tumor-Cells-Treated-With-Bevacizumab-Show-Improved-OS

Postmenopausal HRT & use of estradiol plus levonorgestrel IUD is assoc with increased risk of fallopian tube cancer
http://t.co/ppFIu9EDou

Additional Resources:

SGO Highlights:

OCNA:
http://www.ovariancancer.org/wp-content/uploads/2014/04/2015-SGO-Research-Roundup.pdf

Women of Teal Blog:
http://womenofteal.blogspot.com/2015/03/sgo-from-distance.html and http://womenofteal.blogspot.com/2015/03/sgo-from-distance-part-2.html

AVASTIN GOG 213

OncLive “overall survival (OS) of nearly 5 months compared with chemotherapy alone for women with platinum-sensitive recurrent ovarian cancer, according to results from the phase III GOG0213: “

http://www.onclive.com/conference-coverage/sgo-2015/Bevacizumab-Regimen-Extends-Survival-in-Phase-III-Ovarian-Cancer-Trial

http://www.targetedonc.com/conference/sgo-2015/Bevacizumab-Regimen-Hits-New-OS-Milestone-in-Ovarian-Cancer

mixed results GOG 213 http://www.medpagetoday.com/MeetingCoverage/SGO/50720

http://consumer.healthday.com/cancer-information-5/avastin-news-806/progress-reported-in-battling-advanced-ovarian-cancer-697822.html

Surgeon vs CT results of size of tumors left behind.

http://www.medpagetoday.com/MeetingCoverage/SGO/50748

Fosbretabulin /Avastin

OXiGENE Announces Presentation of Phase 2 Data Confirming That Addition of Fosbretabulin to Bevacizumab Significantly Increases Progression-Free Survival in Recurrent Ovarian Cancer

http://investor.oxigene.com/releasedetail.cfm?releaseid=881614

Immunotherapy

http://immuno-oncologynews.com/2015/03/30/immunotherapy-delays-recurrence-of-both-stage-iii-and-iv-ovarian-cancers/

IP chemo advantages

http://www.targetedonc.com/articles/Survival-Advantage-Seen-With-IP-Chemotherapy-for-Ovarian-Cancer

Recommendations for the prevention of ovarian cancer : SGO

http://onlinelibrary.wiley.com/doi/10.1002/cncr.29321/full

Dr Brawleys commentary-http://onlinelibrary.wiley.com/enhanced/doi/10.1002/cncr.29347/

PARP inhibitor - olaparib (Lynparza)

http://www.medpagetoday.com/MeetingCoverage/SGO/50774?xid=nl_mpt_DHE_HZ_2015-04-02&utm_content&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=ST&eun=g794905d0r&userid=794905&email=robyn.kurth%40sgo.org&mu_id=6075589

diagnostic tool- bracaAnalysis

http://www.targetedonc.com/conference/sgo-2015/bracanalysis-cdx-companion-diagnostic-progresses-personalized-ovarian-cancer-treatment

FANG vaccine trial / Immunotherapy

http://immuno-oncologynews.com/2015/03/30/immunotherapy-delays-recurrence-of-both-stage-iii-and-iv-ovarian-cancers/

http://www.medpagetoday.com/MeetingCoverage/SGO/50739

https://sgo.confex.com/sgo/2015/webprogram/Paper4165.html*abstract

Endometrial Cancer -Cediranib
http://www.targetedonc.com/conference/sgo-2015/Cediranib-Monotherapy-Safe-Effective-in-Endometrial-Cancer

April Chat: SGO Annual Meeting Recap and ASK the DOC

This month's #gyncsm chat ( 4/8/15, 9pm EST) will focus on news from the SGO Annual Meeting on Women's Cancer including a segment we call ASK the DOC. 

The SGO's  (Society of Gynecologic Oncology) Annual Meeting on Women's Cancer was held in Chicago on March 27th to the 31st. The SGO " is the premier medical specialty society for health care professionals trained in the comprehensive management of gynecologic cancers" and they encourage research and provide education for women's cancer care. The agenda included presentations and poster sessions on the prevention and screening of gyn cancers, novel approaches to the management of gyn cancers, translational research, improvements in patient outcomes as well as the implications of global research. 

We will begin our chat on Wednesday by discussing research results reported at this year's annual meeting. Some of the studies include:

FANG vaccine for ovarian cancer 

GOG 213 (a randomized trial comparing carboplatin and paclitaxel with or without bevacizumab in platinum sensitive relapsed ovarian cancer patients.)

Immunotherapy

Parp inhibitors including  Cediranib and Endometrial cancer

An HPV study on cervical cancer & the CTC (Circulating Tumor Cells)  / Bevacizumab (Avastin) study  

BRCA 1 & 2 mutations: One study showed that a  majority of BRCA carriers don’t have family a family history of breast or ovarian cancer while a second study showed that most ovarian cancer patients don’t know their BRCA status. 

Benefits to being treated at a high volume hospital

Join us as we discuss how studies such as these will impact surveillance, education and treatment.

You may read the abstracts from the meeting here. While videos from the meeting including "Meet the Professor" may be found here. Some tweets related to studies reported on at the annual meeting may be found on the blog posts SGO From a Distance and SGO From a Distance Part 2. 

OCNA has provided highlights from the meeting that are of particular interest to ovarian cancer survivors here. Additional highlights provided by Cancer Network (home of the Journal Oncology) may be found here. 

Included in this chat will be our ASK the DOC segment. All chat participants (patients, survivors, caregivers, advocates, etc.) will have the opportunity to ask our docs questions related to the research reported on at the meeting. Maybe there is a research area we had not covered that you are interested in learning more about. ASK the DOC is the perfect time to get your questions answered. 

We are pleased that this month our health care moderators (Dr. Don S. Dizon, Dr. Rick Boulay, Dr. Merry-Jennifer Markham, Dr. Ann Becker-Schutte) will be joined by Dr. William Winter III, a gynecologist oncologist and lead guitarist with NED The Band. Dr. Winter will be tweeting as @NEDthemovie. 

We look forward to you joining us as we talk about the latest research on gynecologic cancers. 


Dee
#gyncsm co-moderator

She Has Lynch Syndrome

March is Colorectal Cancer Awareness month. Lynch syndrome also called hereditary nonpolyposis colorectal cancer (HNPCC) is associated with colorectal cancer but many are unaware that the syndrome is also associated with endometrial cancer and ovarian cancer. Women with Lynch syndrome have a 21-71% risk of endometrial cancer and a 3-14 % risk of ovarian cancer. Additional information regarding surveillance, risk reducing surgery, etc. may be found on the Up To Date website at: http://www.uptodate.com/contents/endometrial-and-ovarian-cancer-screening-and-prevention-in-women-with-lynch-syndrome-hereditary-nonpolyposis-colorectal-cancer.

Georgia Hurst, who was diagnosed with Lynch syndrome in 2011, is an advocate, daughter and sister of colon cancer survivors. She choose to have risk reducing surgery and following that experience started writing the I Have Lynch Syndrome website. The website's mission is "to address the possible plethora of emotional implications of a Lynch diagnosis and to encourage those that may at be at high risk to get genetically tested." We are happy to share a blog post written by Georgia for her blog in June 2013.

Christina and I would like to thank Georgia for her support of the #gyncsm community.

How to be happy after a Lynch diagnosis

I got slapped with my Lynch diagnosis on May 17, 2011. I had my radical hysterectomy on June 10, 2011 and spent the last couple years trying to figure out how to reconcile living with this emotional aspects of this genetic monster. I had to undergo lots of therapy, meds, acupuncture, meditation, books, spending time with friends, exercising, and participating in life affirming activities in order to start feeling better.

Lynch is not something you can only fret about during your annual screenings; it’s something that you must be mindful of every day. Most things I do are for my betterment, to improve or sustain my good health, and if it’s not good for me physically or emotionally, then it doesn’t get to be in my life.
Here is my list of things to do to live a happy life following a Lynch diagnosis.

1. Decide what prophylactic measures you will take/or not and then deal with that. I felt the need to take control immediately following my diagnosis and scheduled my hysterectomy. Learn all you can about Lynch; become your own health advocate and get screened religiously.

2.  Think about most things that you put into your mouth. Will it nourish you or eventually end up destroying you? Do you need to alter your diet and include more fruits and veggies and less animal products? Your diet does play a role in cancer’s development. Drink more green smoothies and be sure to incorporate things such as kale, spinach, green apples, green tea, and chia seeds into your diet. Let thy food be thy medicine!

3. Workout at least five days a week. I’ve been running for years but now I need it more than ever; first for the endorphins, second because I want to be as trim and fit as possible. Lift weights –  for me, physical strength holds implications for my mental strength. You must make exercise a priority in your life. Period.

4. Spend time with people who teach you, nourish you, love you, and are willing to listen to you. Get rid of the toxic people in your life – you have enough crap to deal with – eliminate them and make room for more positive people in your life.

5. Spend time cultivating your spirituality. I meditate – a lot, usually for an hour. Pray, meditate, whatever it is that you do and do it more frequently. Talk to yourself and tell yourself that you’re healthy, strong, and that you will not allow for cancer to manifest itself into your body. Breathe deeply. Repeat.

6. Read books about death and happiness. It’s amazing what profound words some books have written in them. I’m partial to Buddhist philosophy; it’s helped me immensely with dealing with my death anxiety. Also, reading about other people’s life issues provides you with perspective on your own life and makes you realize how fortunate you are in many ways.

7. Spend time in nature. Go for a walk, go to the beach, garden, spend more time outside. It works wonders for the soul.

8. Do at least one thing that makes you feel good every day. Period.

9. Cater to your inner child. Do things you’ve always wanted to do and keep putting off. I recently built an eight foot teepee in my basement – I’ve always wanted one since I was a kid. Are you going to wait until you’re sick and old to do them? Do them now.

10. Express gratitude, every day. Count the things that you’re grateful for and remember there is someone always worse off than you.

11. Limit your time on FB Lynch and cancer platforms. They can be highly depressing and cause your optimism regarding your own health to wane. You know you have Lynch and can take preventative measures to fight it; many of those who are suffering from cancer did not know they had Lynch until it was too late. Keep that in mind when reading their stories. You’re one of the lucky ones!

12. Make your home your sanctuary; I have peaceful looking Buddhas about the house, upbeat music playing, candles burning, and flowers in my home. It’s hard to be depressed in a lovely, calm environment.

13. Have something to take care of every day. Adopt a dog or cat from the shelter. Get a fish. Get some plants. Having living things that need to be cared for by you gives you more purpose.

14.  Leave your mark and/or create something. Do something that makes you feel as though you’ve made a difference. You don’t need to win the Noble Peace Prize, but do something you can be proud of; for me it’s been this blog and my advocacy work.

15. Connect with others who have Lynch and are not sick. Just remember, you’re not alone. If you can’t find anyone else, zap me an email, I’d be happy to talk to you.

16. Stop worrying about others in your family and whether or not they’ll be screened. You cannot control anyone but yourself. All you can do is set an example for them.

17. Be happy; if you’re doing every thing you can, exhausting all of your options, getting screened, and taking care of yourself, you should gain some solace from all of this.


And she’s off.
Namaste.
Georgia

Dee
#gyncsm Co-moderator

"No One Ever Told Me..." - March 11,2015 Chat

We are happy to have had so many survivors join us this evening. There was a lively fast paced discussion  among our forty-two participants as they answered these questions:

T1A: For patients/survivors/loved ones, share "No one ever told me  ___ ". 
T1B: For our healthcare professionals/advocates, what do patients seem to be most surprised about or even blindsided by?

T2A: Are there things you wish you knew before your (or your loved one's) treatment (incl. surgery, chemo, radiation)? 

T2B: Healthcare professionals: What are you surprised that patients don't ask about?

T3: What pre and post surgery and/or pre and post chemo tips seem to help the most or you wish someone had told you?

T4: For those who have completed initial treatment, what do you wish people told you about survivorship - physical & mental? What are the on-going care needs and issues that surprised you or you wish you had more information about beforehand?

Some of the fill-in-the-blanks for "No One Ever Told Me ... " included:

• Surgical Menopause and its effects
• Losing ALL your hair
• Chemobrain
• Emotional scars
• Energy levels
• Family History
• Fertility options
• #Scanxiety
• Radiation Effects
• I would have to be my own advocate

You may read the entire trancript here. And find additional analytics here. 

Please scroll down for a list of resources shared during our chat. 

Remember that patients & caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/dFCf1Mcahw .

Mark your calendar for next month's Society of Gynecological Oncologist Annual Meeting  Recap & Ask the Docs chat on Wednesday, April 8, 2015.  We are happy that Dr. William Winter from @nedtheband will join us to discuss news in the field to participate in the  “Ask the Docs” segment.  See you then. 

Dee 

#gyncsm co-moderator

"Find a bit of beauty in the world today. Share it. If you can't find it, create it. Some days this may be hard to do. Persevere." #lisa

Resources: 

50th Anniversary of Cisplatin- http://theconversation.com/happy-50th-anniversary-to-cisplatin-the-drug-that-changed-cancer-treatment-38382

Pelvic Physical Therapy - http://pelvicguru.com/2013/12/28/what-is-pelvic-physical-therapy-and-why-doesnt-everyone-know-about-it/

Probiotics and Radiation Therapy- http://radiationnation.com/radiation-oncology/probiotics-radiation-therapy

Top things to know about recovering from cancer

http://thathealthsite.com/top-things-know-recovering-cancer/

6 Things I Wish I Knew About Cancer - http://www.huffingtonpost.com/robyn-stoller/cancer-treatment_b_3010074.html

The Chemo Tip List I wish I Had http://thestir.cafemom.com/healthy_living/137918/the_chemo_tip_list_i

What I Wish I Knew Before My First Chemo- http://womenofteal.blogspot.com/2011/05/what-i-wish-i-knew-before-my-first.html

North American Menopause Society - http://www.menopause.org/for-women/find-a-menopause-practitioner

@hystersisters  HysterSisters

Demons of the Mind - PTSD and Mental Health Concerns July 2014 #gyncsm chat 

http://gyncsm.blogspot.com/2014/07/demons-of-mind-ptsd-and-mental-health.html

Cancerism - Confronting the Biases We Share- https://www.youtube.com/watch?v=oBSARX94-ZM

Where to Go For Support #gyncsm Chat August 2014 http://gyncsm.blogspot.com/2014/08/where-to-go-for-support-august-2014-chat.html

What I Wish I Knew When I Was Diagnosed With Ovarian Cancer - Smart 

Patients https://www.smartpatients.com/ovarian-cancer/what-i-wish