Friday, April 3, 2015

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




    Thursday, March 26, 2015

    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

    Wednesday, March 11, 2015

    "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: 




    Top things to know about recovering from cancer
    http://thathealthsite.com/top-things-know-recovering-cancer/





    @hystersisters  HysterSisters

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

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


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


    Thursday, March 5, 2015

    March Chat: "No One Ever Told Me..."

    We invite all gynecologic cancer survivors, caregivers and health care providers to join us for our March Tweet Chat on Wednesday, March 11th, at 9pm EST ( 8pm CST / 7pm MST / 6pm PST). This month we will ask you to share your thoughts on what you (or your patients) wish you knew about gynecologic cancers, treatment and survivorship. We will also ask you to share tips that helped you through the various parts of your life as a survivor / thriver.

    We hope these topic questions will provide food for thought. 

    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?

    Remember survivors and caregivers can also join the discussion on Smart Patients - before and after the chat. You can sign up at  https://www.smartpatients.com/gyncsm .

    We look forward to having a lively discussion. 

    Dee
    Co-moderator

    Tuesday, February 24, 2015

    Additional Rare Disease Day Information

    Rare Disease Day® is February 28th! 
    We have already provided some information about Rare Disease Day® in a recent blog post.   But we wanted to share with you two additional Rare Disease Day chats that will be occurring this week along with some twitter handles to watch. Thanks again to Stephanie Fischer (@SDFatPhRMA) for providing this important information. 

    Wednesday, February 25th, 2:30-3:30pm ET: NIH will host a tweetchat to raise awareness of rare disease and promote Rare Disease Day at NIH. NIH Director Dr. Francis Collins will participate as will Dr. John Ferguson, Medical Consultant, Office of Rare Disease Research in the National Center for Advancing Translational Sciences (NCATS).
    ·         Hashtag: #NIHchat
    ·         Handles to watch: @NIH, @NIHDirector and @NCATS_NIH_GOV

    There is also a    Rare Disease Day at the National Institutes of Health: February 27th in Bethesda, MD – and available by WEBCAST.


    Thursday, February 26th, 1-2pm ET: The Center for Jewish Genetics and Global Genes will host a tweetchat to raise awareness of rare diseases.
    ·         Hashtag: #RareDiseaseChat

    ·         Handles to watch: @JewishGenetics, @GlobalGenes & @BYMRKH

    Here are some Rare Disease twitter handles to watch this week:
    ·         NORD: @RareDiseases
    ·         Global Genes: @GlobalGenes
    ·         Rare Disease Day US: @RareDayUS
    ·         World Rare Disease Day: @RareDiseaseDay
    ·         Rare Diseases Europe: @eurordis
    ·         Coordination of Rare Diseases at Sanford (hosting an event on Friday): @SanfordCoRDS



    Dee
    Every Day is a Blessing! 

    Thursday, February 19, 2015

    Survivor Stories: Dena's Story

    February is Vulvar Cancer Awareness Month. Vulvar cancer is a rare disease which accounts for 0.6% of all cancers in women. Approximately 5,000 women will be diagnosed with vulvar cancer in the US in 2015. We are pleased to share Dena's Story with our readers. 


    In the midst of this long cold winter, are you dreaming of summer? Can’t wait for sun, sand and swimming? Summer has always been one of my favorite times of the year, but sadly, not so much anymore. As a six-year survivor of vulvar cancer, summer has a whole different meaning to me now. Summertime now means sweating, itching and one miserable outbreak after another.

    This March will mark another year for me as a survivor. But what does being a survivor mean? I think of a survivor as a person who has overcome something. I haven’t overcome this yet, and I don’t know if that’s in the future for me.

    As my enemy continues to attack, I rather think of myself as a warrior still fighting the battle, not giving up, and always looking for more warriors to help me and educate me on strategies to maintain peace below the enemy line. As you sit there reading this, you’re probably asking yourself, “What is she talking about?”

    Let me explain, and shed some light on a rather dark, rarely discussed subject:
    My name is Dena; my friends call me De. I had my first surgery for vulvar cancer in March 2009. My surgeon told me I was one of the youngest patients he had treated, and that he would be surprised if I lived another four to five years. I looked at him as if he was crazy. I was thirty-eight at the time, still considered myself to be young and for the most part healthy. I could not imagine I wouldn’t be living in a few years.

    For the next few days I cried and reflected. Why me? Then I decided to prove this doctor wrong, to educate myself and fight for my life. Since then my first surgeon retired, and I have had two more surgeries.

    After I was diagnosed I did what most other women do when they are diagnosed with Vulvar Cancer, I put on a mask, smiled and hid behind that for a long time. Last year I finally proved my first surgeon wrong. I removed my mask in June and decided it was time for me to share my story with other women.

    It was difficult at first, but once I removed my mask I was given one of the best challenges I’ve ever faced. I was asked to be a speaker and share my story at a local library. I had never spoken publicly before. But thanks to a very supportive co-worker who encouraged me and stood beside me, it was that day I realized I’m a warrior. People asked questions and wanted to know more about the enemy. It came so easily to tell my story and to help them have a better understanding of what Vulvar Cancer is.

    Shortly after that speech, I felt I might have the answer to the question, why me? I was meant to share my story with others. As I was preparing for my first National Race to End Women’s Cancer, the Foundation for Women’s Cancer’s major annual awareness and fundraising event, I held a bake sale where I provided literature about all women’s below the belt cancers – what I call the enemy line.

    Women then felt comfortable coming to me with questions, and I discovered I am not alone, that there are others. I realized maybe I was my physician’s youngest patient, but there are more women out there my age or even younger who just haven’t removed their masks yet. Maybe they are still looking for other warriors, because when you stand alone it’s hard to face your enemy. When you stand with other warriors it’s a little easier.

    So now that you know a little about me, let me give you a better understanding of the enemy. My vulvar cancer was a result of HPV that was misdiagnosed for a few years. This ex-sun worshiper has a very hard time enjoying the sun now, due to periodic outbreaks of the HPV. Sweating and moisture create misery for me, including uncontrollable itching. Scratching causes a rash of small bumps, swelling and sores.

    Undergarments and pants become very uncomfortable, panty hose are worse. Ointments can help but must be used sparingly as they contain steroids that can cause the skin to thin out and tear.

    At times my enemy goes away but it’s never gone forever. The most common time for outbreaks is during my period; a week later it clears up. The key to maintenance is keeping dry. Ice packs are great to help sooth itching, also sleeping without undergarments at night can be more comfortable. No body washes or soaps containing perfumes, as these aggravate the condition.

    I hope I have shed some light on my enemy. If you have any questions, please remove your mask and ask. I’m always willing to help. You are not alone.

    I also invite you to join my team, Vulva Vixens, for this year’s National Race to End Women’s Cancer, Sunday, Nov. 8 2015 in Washington, DC. Register at endwomenscancer.org – the website will be live in March. Join the movement!

    I wish you the best in your battle.

    Warrior/Survivor,
    De

    This post originally appeared on the Foundation for Women's Cancer site and is being used with permission.
    Also find there, Dena’s Sisterhood of Survivorship essay about her diagnosis.

    Monday, February 16, 2015

    Day by Day , Hand in Hand : Rare Disease Day February 28, 2015


    The #gyncsm community has once again joined forces with rare disease patients and health care advocates in the U.S. and around the world for Rare Disease Day® on February 28th.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.

    In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments. 

    Do you know the gynecologic cancers that are considered rare diseases by the NIH's Office of Rare Diseases ResearchThey are:

    Ovarian
    Uterine,
    Endometrial,
    Fallopian tube,
    GTD (Gestational Trophoblastic Disease),
    Vaginal and
    Vulvar cancers


    There are a number of tweet chats that are being held this week that are discussing rare diseases. Feel free to join in the discussions. (Thank you Stephanie Fischer, @SDFatPhRMA, for compiling these.)

    ·         Tuesday, February 17th, at 1-2pm ET: NORD & Dr. Richard Besser of ABC News are co-hosting a chat on Conquering Rare Disease.
    o   Hashtag: #abcDRBchat
    o   Handles to watch: @RareDiseases, @RareDayUS, @abcdrbchat & @DrRichardBesser

    ·         Tuesday, February 17th, 8-9pm ET: Treatment Diaries and Give Rare will co-host a tweetchat on rare disease collaboration.
    o   Hashtag: #TreatDiariesChat
    o   Handles to watch: @treatdiaries, @giverare & @keeganj

    ·         Wednesday, February 18th at 1pm ET: Isabel Jordan will moderate a tweetchat on rare disease for the Health Care Social Media Canada community.
    o   Hashtag: #hcsmca
    o   Handles to watch: @seastarbatita & @hcsmca

    ·         Wednesday, February 18th, at 8pm ET: The Massachusetts Biotechnology Council & PhRMA will cohost a tweetchat on the State of Rare Disease Research.
    o   Hashtag: #Impact2020
    o   Handles to watc: @MassBio, @SDFatPhRMA, @AARDATweets & @NFincNE

    ·         Thursday, February 19th, at 2pm ET: Global Genes & WEGO Health will host a World Rare Disease Day Tweetchat.
    o   Hashtags: #RARETalk & #hachat
    Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.

    Watch this Rare Disease 2015 video

    For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org).  To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.


    Dee

    Co-moderator