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

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.


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:

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.



Friday, February 13, 2015

Survivor Stories: Help Keep a Sister Alive - Maggie Heim

This month we are pleased to share the story of ovarian cancer survivor, Maggie Heim. Maggie's experience with a recurrence and the shortage of the chemotherapy drug Doxil prompted her to start a blog and non-profit, Help Keep a Sister Alive.  


Helping to Keep Sisters Alive 

In July 2011, Maggie Heim had her first recurrence of advanced ovarian cancer, which was originally diagnosed in 2009. Her doctor recommended using intravenous Doxil and carboplatin to treat the recurrence. Unfortunately, no Doxil was available at that time and was still not available a month later when she started treatment with carboplatin only. While looking into the Doxil shortage, Maggie learned that many other drugs used for cancer patients were also unavailable or in serious shortage. So she and other ovarian cancer patients formed an advocacy group, which routinely engaged with the press to push for the end to the pervasive drug shortages affecting cancer patients. She also started writing a blog called Help Keep a Sister Alive to advocate for the end of the drug shortages. In February 2012, the FDA responded to the outcry against the unavailability of Doxil by permitting the importation of a generic version because the patent holder simply could not get Doxil manufactured under safe conditions in the United States. 

Maggie had another recurrences of ovarian cancer in June 2012 and went into a clinical trial instead. She has been undergoing treatment off and on for most of the five years since she was diagnosed. She was also diagnosed with breast cancer in the spring of 2013. Throughout this time, until July 2014, she was senior vice president, legal at Sony Pictures Entertainment in Los Angeles.

Maggie is currently the Founder and CEO of the nonprofit organization, Help Keep a Sister Alive  (HKASA) whose website (helpkeepasisteralive.org) assembles, in one place, information to help patients, survivors, caretakers, friends and family cope with ovarian cancer and other cancers affecting women. HKASA’s mission is to empower patients and caregivers by providing information relating to many different aspects of the cancer experience and support throughout the cancer experience. It is a partner member of the Ovarian Cancer National Alliance.

With a research PhD in Psychology (1981) and a JD from UCLA (1984), Maggie has unique experience to oversee HKASA. Her scientific research background and 30 years of practicing law give her a special insight into providing accurate and useful information about ovarian cancer.

Research shows that patients who advocate for themselves have better outcomes. Unfortunately research also shows that most patients feel they do not have the required information to talk to their doctors about treatment and clinical trials. HKASA’s mission is to empower patients and caregivers by providing reliable information in one location on the internet relating to many different aspects of the cancer experience and support throughout the cancer experience. With this information available through the internet, patients hopefully will experience that better emotional and survival outcomes.

HKASA's main program is the website www.helpkeepasisteralive.org. A constantly evolving resource, the website currently contains the following portals to provide users with the most current information: 

  • FOR NEWBIES – information for those newly diagnosed with ovarian cancer-e.g. how to find a doctor, symptoms of ovarian cancer
  • FINANCIAL INFORMATION – list of sites addressing Social Security disability (including compassionate allowances), Medicare, Affordable Care Act, General Information about Financial Assistance, Prescription Drug Assistance, Travel to Treatment Assistance
  • CLINICAL TRIALS – list of sites to help search for clinical trials, Other Information about Clinical Trials and Clinical Trial Coverage Under the Affordable Care Act
  • COMMUNITY SERVICES – list of sites in certain states, nationwide websites and websites concerning palliative care
  • CANCER RESEARCH – information about latest ovarian cancer research
  • DRUG SHORTAGES- information about current shortages affecting cancer patients
  • ENVIRONMENTAL ISSUES - list of research connecting cumulative environmental impacts and cancer, including information on particularly toxins and soon how the impacts of climate change affect health outcomes for existing and future cancer patients
  • CANCER AND WORK- list of resources on how to address workplace issues while undergoing treatment; how to apply for worker’s leave and compensation; labor rights for patients and caretakers, etc.
  • OVARIAN CANCER SUPPORT GROUPS - provides an up to date list of support groups for ovarian cancer patients and caretakers.
The constituents HKASA serves are ovarian cancer (and other cancer) patients, caretakers, family and friends, including a sizable millennial population which we believe are the children of patients looking for information to help the patient.

HKASA plans to add more legal content, clinical trials information, research content and a chat function about subjects on the website in 2015 by consulting and partnering with experts. HKASA also will expand its coverage for BRCA positive people and entries how to identify and treat ovarian cancer.

Wednesday, February 11, 2015

Care Beyond Medical Care- February 11, 2015 chat

We were so pleased to have Reimagine (@reimagine_me) with us for this month's Care Beyond Care Chat. Reimagine (https://reimagine.me/) helps people thrive following a cancer diagnosis through skills training, community, a magazine & an "online university".  Sophia Kercher (@sophiakercher), editor at @Reimagine_ME's magazine and Cindy Finch (@5thstepofcancer ), clinical therapist, instructor and writer at Reimagine also joined the chat.

Forty-four participants tweeted 534 Tweets in the hour. Additional analytics can be found here and the chat transcript can be found here

These questions guided our discussion:

T1: Many patients feel they lose control of their life while in treatment. What can help? What did you do to take control? 

T2: Did you pamper yourself while in treatment? What did you do? What did others do for you? Tips for those in treatment now? 

T3A: Dealing with a gyn cancer can cause stress. What things do you find helpful in reducing stress? What are some resources?
T3B. Did you ever feel pressured to be "happy" and "positive" ? How did you respond to people who said you needed to be.

T4: Feeling sad & experiencing depression is common for survivors. What helps you deal w/these feelings? Did you bring up w/ doctor?

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 chat No One Ever Told Me... on Wednesday, March 11, 2015 at 9pm EST.  See you then. 



"A problem with how we treat cancer -- and how to fix it” by Cindy Finch http://t.co/liNCREyWKe

Reimagine Resources:
Reduce your Stress with Meditation: https://t.co/zjp3QcwvMo
9 Reasons to Meditate:https://t.co/j5iTIm9VNB
Finding a New Normal with Cancer: https://t.co/i6Yp2Qp3yS
Why Self Care Isn't Self Indulgent:https://t.co/d8D746W4CA
5 Tips for Taking Care of Yourself When You're a Caregiver:https://t.co/VmL4qnqgX2
Things to Do When You're Stuck at Home:https://t.co/krN9oixv51
3 Ways to Feel Great About your Body in 2015: https://t.co/k5ilCzbgSB
Basic Training- 9 class course in resiliency skills:https://t.co/L3UYy66saB
Yoga Might Heal-Scientists Say So!:https://t.co/fNMywbqwy6

Journal Articles:
A Literature Review of the Social & Psychological Needs of Ovarian Cancer Survivors http://t.co/b5ezCR3Gxf

Resilience, Positive Coping, & QOL Among Women Newly Diagnosed With Gynecologic Cancer : http://t.co/EqWXKmfjms

Quality of Life in Platinum-Sensitive Recurrent #Ovarian Cancer: Chemotherapy Versus Surgery + Chemotherapy http://t.co/n1nUJtZtCp

Quality of life and patient-reported outcomes in #endometrialcancer clinical trials: a call for action! 

Improving quality of life in female cancer survivors: current status and future questions. @drdonsdizon http://t.co/JjfYeF9roz

Quality of Life in #OvarianCancer Treatment and Survivorship http://t.co/VJlGtP4sUf
American Psychosocial Oncology Society @APOSHQ info, helpline & resources http://t.co/2Q56PjeKQQ

The Road To Resilience http://t.co/lC7kS6OiH2 via @APA

Can We Maximize Both Value and Quality in Gynecologic Cancer Care? A Work in Progress @ASCO  http://t.co/U7PKVfCdkh

Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Report https://t.co/UbERG1CLb5

Cervical Cancer Survivorship: Long-term Quality of Life and Social Support. http://t.co/iIYIUANJGK

Profiles in Oncology Social Media Series: @DrMarkham & the #gyncsm chat http://t.co/SWtCB2SGTe

Other online information:
How Not To Say the Wrong Thing- Ring Theory of Kvetching: Comfort in, Dump out. http://t.co/TF4zJoH1uL

Stress Relievers: Tips to Tame Stress: http://t.co/KzjBIfDOAJ @MayoClinic

Example of UPMC's Survivorship Program: (PDF) http://t.co/HQdOn0copQ 

Cancer Depression / PTSD Info from @cancerdotnet http://t.co/YamzPwc89e

Support Connection Announces Its Next Book Group For Women With Cancer | The Yorktown Daily Voice http://t.co/2OufaiSf6F

Vulvar cancer fact sheet via @NCICancerStats : http://t.co/UWD5sBheIT

The Human Side of Cancer
Happiness in the Storm


Trips for Young Adults: @FirstDescents@athletes4cancer 
Music for Meditation: http://mysoftmusic.com/

Friday, February 6, 2015

February Chat: Care Beyond Medical Care

This month's chat will take place on Wednesday, February 11, 2015 at 9pm EST (8pm CST / 7pm MST / 6pm PST). 

Our  topic will be Care Beyond Medical Care. We will be joined by Reimagine: "Medicine treats your cancer, we help you take your life back. Take a class today."
( reimaginecancer.com | @Reimagine_ME )

For further reading on this topic, here's an OpEd piece by Cindy Finch of Reimagine.ME

Topic Questions: 
T1: Many patients feel they lose control of their life while in treatment. What can help? What did you do to take control? 

T2: Did you pamper yourself while in treatment? What did you do? What did others do for you? Tips for those in treatment now? 

T3A: Dealing with a gyn cancer can cause stress. What things do you find helpful in reducing stress? What are some resources?
T3B. Did you ever feel pressured to be "happy" and "positive" ? How did you respond to people who said you needed to be.

T4: Feeling sad & experiencing depression is common for survivors. What helps you deal w/these feelings? Did you bring up w/ doctor?

We look forward to having you join us for a lively and informative discussion. 

#gyncsm co-moderator