Advances in Personalized Medicine for Gyn Cancers - May 13,2015

Forty-five participants joined us for our May chat as we discussed Advances in Personalized Medicine. We were grateful to have Dr. Scott Richard (@sdr2md), Director of the Division of Gynecologic Oncology at Hahnemann University Hospital, and Kelly Mellott and Dr. Juan Avila from Helomics™ Corporation (@HelomicsCancer) share their expertise on this important and timely topic. Other participants included our health care moderators, researchers, health care providers, survivors and advocates. Chat analytics may be found here.

I've highlighted just a few of the tweets in response to our discussion questions.

T1A: What are some misconceptions you've heard about personalized medicine?

T1. Misconception: That tumors are genomically static and studying 1 sample (eg biopsy) will be informative for later line decisions #gyncsm

— Angela Alexander (@thecancergeek) May 14, 2015

T1A: Another big misconception is that these methods are too expensive and unaffordable for real patients #gyncsm

— Helomics (@HelomicsCancer) May 14, 2015

T1B: What personalized medicine options are currently available to gyn cancer patients? What is tested - tumor tissue, blood?

A1B: Current options include blood tests for genetic risk like BRCA, MyRisk, and Lynch Syndrome testing #gyncsm

— Scott Richard (@sdr2md) May 14, 2015

T1B: Our product, ChemoFx, is a treatment marker which tests a patient’s cancer cells response to various chemotherapeutic agents #gyncsm

— Helomics (@HelomicsCancer) May 14, 2015

Some orgs active w/ GYN cancer Precision Med @HelomicsCancer @ClearityFnd @FoundationATCG @myriadgenetics @carisls @AmbryGenetics #gyncsm

— Christina Lizaso (@btrfly12) May 14, 2015

T2: How does genetic testing impact treatment decisions? What genetic tests are recommended for gyn cancers?

Genetic testing not just for risk assessment and family knowledge, with PM genetic testing results factor into treatment decisions. #gyncsm

— Christina Lizaso (@btrfly12) May 14, 2015

T2 BRCA testing should be done on all ovarian cancers and can open new treatment options PARP inhibitors otherwise not available #gyncsm

— Rick Boulay,MD (@journeycancer) May 14, 2015

T3: How can I discuss personalized medicine options with my cancer care team? What if my doctor doesn't believe in these options?

A3: If your Doc doesn’t believe or use personalized tests, then ask her or him if they would want this information for their mom #gyncsm

— Scott Richard (@sdr2md) May 14, 2015

T3 Personalized medicine can mean different things to different folks. In speaking to clinicians make sure you are on the same page. #gyncsm

— Rick Boulay,MD (@journeycancer) May 14, 2015

T3: Remember, it is ALWAYS okay to seek a second opinion. It’s your treatment and your life – your doctor is part of your team #gyncsm

— Helomics (@HelomicsCancer) May 14, 2015

T4A: How do you think the President’s Precision Medicine Initiative will affect patients/ research?

T4 The Precision Medicine Initiative will bring research funding and interest into the topic. #gyncsm

— Rick Boulay,MD (@journeycancer) May 14, 2015

T4 - am hoping the president's PM initiative also covers personalized immunotherapy and not just genomics driven targets therapies #gyncsm

— Andy (@AndytweetM) May 14, 2015

T4B: What are the challenges to bringing the benefit of personalized medicine to gyn cancer patients? How will patient care change?

@gyncsm as ppl become thr own advocates of demanding good care from HCP. slowly u c personalized medicine. Findg ur voice #gyncsm

— Ann Wax (@annwax) May 14, 2015

If you want to read more of this informative discussion you may find the transcript here .

A list of resources shared by participants during the chat may be found at the end of this post.  

We hope you will join us on June 10, 2015 as we join with #hpm for a chat on Palliative Care. And be sure to watch for #gyncsm in tweets reporting the latest from the ASCO Annual meeting (#ASCO15, May 29-June 2).

Dee

#gyncsm co-founder and co-moderator

RESOURCES:

Precision Medicine and Targeted Therapy overview via @theNCI: http://t.co/OvBNHgBinH

Overview of immunotherapy tactics and trials for cervical and ovarian http://t.co/50EGJ4929S

@myriadgenetics: Companion Diagnostics Visit http://t.co/vjcgk78Kne

Personalized Cancer Therapy - MD Anderson https://pct.mdanderson.org/

Organizations active w/ GYN cancer Precision Medicine @HelomicsCancer @ClearityFnd @FoundationATCG @myriadgenetics @carisls @AmbryGene

Research explores new, personalized #ovariancancer treatments http://t.co/uGCZXNadXD

National Society of Genetics Counselors http://t.co/HJ6EgbJjxa

ASCO 2015 abstract PM and endometrial cancer- more to learn http://t.co/oJFl6EV8IG
ASCO abstract for PM and cervical cancer http://t.co/eSL3RnIXCv
ASCO abstract for ovarian cancer and PM http://t.co/PimP9Mx6aX

@CancerTodayMag article lists good questions to ask your Doctor http://t.co/zZrCctRxml

How to Talk so your Doctor Will Listen (not specific to PM) http://t.co/2VFICJBQDO

Patient resource for PM / olaparib treatment for #ovariancancer http://t.co/ovlGNH2J5F

Helomics™ Corporation :
patient section currently http://t.co/2vzrfni8gF
questions for your doctor for #ovariancancer: http://t.co/IllLM0Mav4
checklist to talk to your doctor for #endometrialcancer or #uterinecancer: http://t.co/gPQgDPYGmx

@myriadgenetics
“Personalizedmedicine is a game changer – it’s the future of medicine.”video   http://bit.ly/1OUi62f
#ovariancancer patient discussing PM http://t.co/8V7qPTjAtN

@permedcoalition The Case for Personalized Medicine - 4th Edition w/ Drugs/Relevant Gene Chart http://t.co/aYvmmjKmY3
Pg 6: % pts whose tumors driven by certain mutations could be targets for specific drugs, by cancer type http://t.co/Nm6Fg0wgLg

Bombarded w/Changes in Health Care & Beyond, Gyn Oncologists Prepare for the Challenges Ahead http://t.co/JcftUtVO0…

Fact Sheet President's Precision Medicine Initiative : https://t.co/A85dgI6S0E

#PARP inhibitors: A new era of targeted therapy #ovariancancer  http://t.co/73WAO2zmlM

Image of key pathways in #ovca  http://t.co/qR4qXxJBJS

Immune-Based Treatment Shows Promise against Metastatic Cervical Cancer http://t.co/4y4nFEGqkF

ovarian cancer FANG vaccine http://t.co/QXUAKclm6d

SGO genetic testing in gyn cancers: ovarian cancer https://t.co/lp5gWgW8FD
SGO Lynch testing statement for endometrial cancer https://t.co/lp5gWgW8FD
SGO statement on Next Gen multi- gene sequencing panels https://t.co/Mu8zBe3Y8r

Saving Tumor Tissue @OCRF Webinar http://t.co/FeYvQbk7Rq

@OncLive Search for Immune-specific biomarkers is in full swing: http://t.co/JXZRr00vPG

Imprecise marketing of precision medicine: Advertising may be running ahead of science http://t.co/cl1SKHbOvQ

Lecture by Dr. Funda Meric-Bernstam  MDACC https://t.co/n6w6exQQEf

Liquid Biopsies may change cancer care #gyncsm http://t.co/VD3MutGt78

@WSJhealth : A New Way to Use Old Tools Against #OvarianCancer http://t.co/L8dFeYl5h5

May Chat : Advances in Personalized Medicine for GYN Cancer

Our October 2013 chat topic was "Genetics and Personalized Medicine". Many new developments and initiatives have occurred since then. During our May 13, 2015 (9pm EST) chat we will provide an update on advances made in personalized medicine and how they impact the care of patients with gynecologic cancers.

In addition to our regular Health Care Moderators, Dr. Scott Richard (@sdr2md) Director of the Division of Gynecologic Oncology at Hahnemann University Hospital and Kelly Mellott and Dr. Juan Avila from Helomics™ Corporation (former known as Precision Therapeutics; they will be tweeting as @HelomicsCancer) will join us for this important discussion. Helomics™ Corporation is a healthcare company that develops innovative diagnostics for the oncology field. PLEASE NOTE: Helomics' participation in this chat is NOT an endorsement of the company's products or services by the #gyncsm community or our health care moderators.

The discussion questions are:

T1A: What are some misconceptions you've heard about personalized medicine?
T1B: What personalized medicine options are currently available to gyn cancer patients? What is tested - tumor tissue, blood?
T2: How does genetic testing impact treatment decisions? What genetic tests are recommended for gyn cancers?
T3: How can I discuss personalized medicine options with my cancer care team? What if my doctor doesn't believe in these options?
T4A: How do you think the President’s Precision Medicine Initiative will affect patients/ research?
T4B: What are the challenges to bringing the benefit of personalized medicine to gyn cancer patients? How will patient care change?

To prepare for our discussion you may read  President Obama's Precision Medicine Initiative Fact Sheet . Additional articles/resources may be found on the CDC's Public Health Genomics page and on the NCI's Precision Medicine and Targeted Therapy page.

We look forward to having you join our discussion or come and "lurk and learn".

Dee
#gyncsm co-founder and co-moderator

World Ovarian Cancer Day - May 8, 2015

The #gyncsm community is pleased to once again partner with the cause World Ovarian Cancer Day (WOCD).  WOCD will be held this year on May 8, 2015. This year’s theme is “Celebrate Women”.

WOCD, was first held in 2013. It unites organizations from around the world in their efforts to raise awareness of ovarian cancer. The reasons a special day is crucial for the effort include the lack of an early detection test for the disease, symptoms similar to less serious illnesses, and high mortality rates.  

Many of our followers know the stats for the US. An estimated 22,000 women will be diagnosed with ovarian cancer and 14,000 women’s lives lost each year. (http://seer.cancer.gov/statfacts/html/ovary.html) 

Do you know the global impact?

A quarter of a million women are diagnosed worldwide with ovarian cancer and the disease is responsible for 140,000 deaths each year. While 89% of the women diagnosed with breast cancer survive five years only 45% of women diagnosed with ovarian cancer survive that long. 

What can you do?

Celebrate the women in your life by visiting the www.ovariancancerday.org.  While on the site you can pledge your support of WOCD and share information about the disease and the Day with five of your friends.  Read the personal stories of women from around the world at http://ovariancancerday.org/personal-stories/

Follow WOCD on facebook at https://www.facebook.com/WorldOvarianCancerDay), 

Follow WOCD on Twitter https://twitter.com/OvarianCancerDY and share tweets such as these:

• By signing the pledge, you join the global movement to raise awareness of ovarian cancer on May 8 http://bit.ly/WOCDpledge  #WOCD 
• May 8th is #WOCDawareness and education for #ovca . Visit ovariancancerday.org and build one voice for every woman. #UnbreakableBond
• Learn the facts about #ovca - raise awareness of the disease for women everywhere. Visit ovariancancerday.org  #WOCD #UnbreakableBond

Thanks for joining our efforts to raise awareness of ovarian cancer worldwide and don't forget to wear teal on May 8^th.

Dee

#gyncsm co-founder

Survivor's Story: GTD and Me – A Story of Diligence, Persistence, and Grace

During the recent tweet chat (#CancerFilm) which took place during the viewing of the documentary the Emperor of All Maladies, Christina conversed with Katie Smith, who was diagnosed with GTD (Gestational Trophoblastic Disease). Gestational trophoblastic disease (GTD) is defined by the National Cancer Institute (NCI) as a group of rare diseases in which abnormal trophoblast cells grow inside the uterus after conception. Trophoblast cells help to connect the embryo to the uterine wall and help to form the placenta. GTD, in most cases, is benign but some cases may be malignant and spread to nearby organs. Please see the NCI site for additional information. We are pleased to have Katie share her story with our community. 

GTD and Me

A Story of Diligence, Persistence, and Grace

I was 28 years old in the winter of 2005.  I had a beautiful one year old son that my husband and I had waited on for almost four years, a new job, and was excited about possibly having more children in the future.  Little did I know my world was about to be turned upside down.

After having my son, my monthly menstrual cycles became quite painful.  But, I just attributed it to getting older.  I also began having a thick discharge, but attributed it to post nasal drip (I have horrible allergies and thought that was the culprit).  In February 2005, I went to the doctor about the painful periods and an ultrasound was performed.  The doctor saw something in my uterus, but stated it was a fibroid.  Traditionally, fibroids can cause intense periods so this made sense.  I was sent home.

The next month, I noticed that my “pregnancy nose” had returned.  You know – that ability to smell someone eating a cheeseburger in the neighboring town.  At that point, I got a little scared.  While I wanted more children, I wasn’t prepared to have one now.  When I took a home pregnancy test, it showed faintly positive.  So, off to my OB/GYN doc I went.

The blood pregnancy test indicated that I had been pregnant but had a miscarriage.  This was devastating!  According to the doctor, my HCG levels were low which indicated that there may still be remnants in the fallopian tubes.  I was given a very light dose of Methotrexate to help flush out any remaining items.  I was again sent home, but was asked to come back in a couple of days for another HCG level check.

But, when I came back a couple of days later, my HCG levels were starting to creep up.  I was asked to come back in two more days for another check.  This went on for about 1 ½ months (including a stronger dose of Methotrexate thrown in there).  For some reason, my levels would not go down.  At this point, my OB/GYN doctor became concerned.  She said, “I really don’t think this is cancer, but I want you to go see my doctor.  He is a Gynecological Oncologist who can rule out cancer and figure out what this is.”

Dr. Don Hall, the Gynecological Oncologist, immediately sent me for an ultrasound.  The Ultrasound Tech stated, “I see a fibroid in there.  That’s it.”  But, Dr. Hall had a feeling that this was more than just a fibroid.  After multiple urine and blood tests, along with a PET scan, the diagnosis was found.  While all of this was going on, I became engrossed in finding out what this could be.  I stumbled across a Gynecological Disease website and found something called “Gestational Trophoblastic Disease”.  The symptoms sounded like the ones I had been experiencing.  Could it really be cancer?

It was a Friday afternoon and I was called in for my results.  With my mother on one side of me and my husband on the other, Dr. Hall delivered the news.  I had a Placental Site Trophoblastic Tumor, which is in the GTD family of cancers.  Less than ½ of 1 percent of women have this type of tumor, and it forms where the placenta attaches to the uterus.  He had already scheduled my hysterectomy for the following Wednesday.  I would be in the hospital for 3 days and on leave for 6 weeks minimum.  I would have a long scar starting from my belly button down, and they may have to remove part of my intestine.  The PET scan had indicated the tumor had protruded through the uterus and was wrapped in the intestine.

Part of me was relieved to have a diagnosis but the other part of me was terrified.  In addition, our insurance was completely maxed out (this was in the day of annual maximum amounts and before the ACA).  We would have to pay for the entire surgery and any other treatments that I would have to go through.  Funny enough-I didn’t worry about the money part.  I just wanted to be alive to see my son grow up.

When Dr. Hall went in to do the surgery, he discovered that the tumor had not protruded but was fully contained in the uterus.  It was removed and sent off for growth rate testing.  If the growth rate was low, no further treatment would be necessary.  If the growth rate was high, I would have to take chemotherapy and radiation.  In addition, it was discovered I had really bad endometriosis and one of my ovaries was removed because it was badly damaged. 

The results of the growth rate testing showed that the tumor was growing at a slow rate.  However, I had to come back every month for HCG testing.  Each time I went it, I would get very anxious.  I had ghost symptoms constantly and stayed panicked.  But, the first year went by with no increase in HCG.  In July 2015, I will be 10 years cancer free. 

There is a very slight chance it could recur as lung cancer, with an even slighter chance of breast cancer occurrence.  But, thanks to God, the concern of my OB/GYN doctor Rebecca Walker and the diligence and persistence of Dr. Hall,  I’ve been able to experience 11 years of bliss with my son. 

What can you take from this story:  Listen to your body.  It will tell you when something is wrong.  If something is wrong, don’t blow it off.  Have it checked out – it might just save your life.

- Katie Smith (@katielizsmith)

Thank you so much Katie for sharing your story with us. 

Dee 

#gyncsm co-moderator 

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