Friday, May 25, 2018

2018 Annual Retreat on Cancer Research in NJ - Public Forum focus on HPV Cancers

Yesterday,  I attended this year's Annual Retreat on Cancer Research in NJ. I usually attend the Public Forum only but this year I registered for the entire day. This gave me the opportunity to network with more researchers during the poster sessions  listen to the keynote given by Dr Doug Lowy (Deputy Director of the NCI) and listen to my gynecologic oncologist present research on precision medicine and disparities in Latino populations.

Here are some highlights of what I found most interesting:

Public Forum
Preventing HPV Related Cancers: Advances and Challenges

Welcome and Overview - Dr Epstein
  • Cervical Cancer is a worldwide problem.
  • In Australia , they have an 83% vaccination rate of young girls which has lead to a decrease in cervical cancer diagnosis. 
  • In the UK , all 12 year old girls get vaccinated in school. 
  • In the US, only 40% of the girls eligible to be vaccinated are. National Goal is 80%. 
  • "HPV should be considered a routine vaccination." 
HPV Related Cancers in Sexual Minority Men: Missed Opportunities for Prevention - Drs Halkitis and Kapadia
  • Sexual minority men with HIV are at a higher risk for HPV.
  • "Poor people have poor health outcomes." 
  • Frank discussions about sexuality are needed.
  • In a cohort study for HIV in men they looked at HPV vaccination rates and found vaccination rates for HPV were low. 
  • Direct messaging of the signs and symptoms of anal cancer are needed

HPV Vaccinations for the Low Income and Uninsured Populations in New Jersey - Dr Tsui
  • There is no mandate in NJ to have young girls and boys receive the HPV vaccination. 
  • Only 45% of young girls who get TDAP vaccination get the HPV vaccination. 
  • Northern counties of NJ have lower vaccinations rates the the rest of the state. 
  • With programs to assist those without insurance to get health care services has led to young girls 11-12  without insurance to have higher rates of HPV vaccination that those with medicaid or insurance. 
  • The vaccination requires 2 doses ( 2 visits) and many are not returning for 2nd dose. 
 Keynote
 Preventing HPV Associated Cancer Through Vaccination and Screening - Dr Lowy
  • 70% of vaginal and vulvar cancers are due to HPV
  • The HPV test detects HPV but many women will not need treatment or develop cancer.
  • It takes years from HPV infection to develop into cervical cancer. 
  • Cervical cancer  develops in women who are HPV + and their  infection does not clear. 
  • Costa Rican study showed level of antibody sufficient from single dose of vaccine ( 7 yrs). Trial of 2 vs 1 dose is ongoing now in Costa Rica.
  • Poor countries use an ascetic acid screening test.   
  • Studies confirm the HPV vaccination is safe. Article reporting dangers of vaccine has been retracted. 
My take away from listening to these HPV focused talks:
We have a foolproof way of preventing cervical cancer - and other HPV cancers ( anal, vaginal, vulvar, throat cancers)
We need to better educate parents on the benefits of the HPV vaccine as a cancer preventer.
We need to better equip pediatricians, PCPs and family physicians with tools to have the conversation regarding the vaccine to insure that young girls and boys are getting vaccinated.


Interested in learning more about HPV ad the vaccine?
Check these resources
https://www.cancer.org/cancer/cancer-causes/infectious-agents/hpv/hpv-and-hpv-testing.html

https://www.cancer.gov/types/cervical/pap-hpv-testing-fact-sheet


Dee
Every Day is a Blessing

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Tuesday, May 22, 2018

Another Graduation!

When telling my story on this blog, I tend to put life events in relationship to my cancer diagnosis.

I was first diagnosed right before my son, Matthew, returned to college for his sophomore year.   My husband drove him back to Virginia a few weeks after my surgery. This is one of my favorite photos from when I was in treatment. My daughter drove me to one of his crew meets. 

In the spring of 2008, I was there to see him receive his Bachelor of Arts degree. I wasn't sure back in 2005 that I would be there.

Five months after his graduation in 2008,  I had a recurrence which required another surgery and chemotherapy. Two years later in  2010,  I returned to campus to see him receive his Master of Arts degree.

 


On May 7th of this year my family celebrated once again. My son received his PhD in History. I was very emotional when I heard them say, " Doctor " as he received his hood.




It is hard to express how grateful I am to all my gyn oncs and nurses who got me to each and every graduation and to my family and friends for their unending support.  Seeing him reach his goal was amazing. And I could not be prouder. 


Dee
Every Day is a Blessing!









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Saturday, May 5, 2018

The Needs of Women with Ovarian Cancer

 


As you know, I am the co-founder and co-moderator of the #gyncsm Community on Twitter. Christina and I founded the community in 2013 for those impacted by gynecologic cancers and those who care for them.

In early 2016 we began working with Teresa Hagan Thomas and other researchers to better understand the needs of women diagnosed with ovarian cancer . We discussed those needs during the #gyncsm monthly chat, Re-envisioning Ovarian Cancer Survivorship in April 2016.

I am pleased that on April 26, 2018, "The Needs of Women Treated for Ovarian Cancer: Results From a #gyncsm Twitter Chat" was published  in the The Journal of Patient-Centered Research and Review. We are honored to be involved in this research. 

Follow this link to read the entire article.
https://digitalrepository.aurorahealthcare.org/…/vo…/iss2/3/


Dee
Every Day is a Blessing! 
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Friday, April 13, 2018

I Lived It

The other day in the car I heard the song "I Lived It" by Blake Shelton.

...Oh, you think I'm talking crazy
In a different language you might not understand
Oh, that's alright
That's just the kind of life that made me who I am...

He is talking about his time growing up but it spoke to me too- it related to how I felt- and sometimes still feel - when I talk about my experience with cancer, let alone ovarian cancer, to those who have never had it. I know my life would’ve been different if I hadn’t had ovarian cancer, but I did, and this is the life I have now. I’ve written a book , lent my voice as a patient advocate, participated in academic papers as an author, attended and spoken at conferences- these are things I would never have had an opportunity to do. Now, I am invited to join a new project for women diagnosed with ovarian cancer, that will include building a community of women diagnosed with the disease to support and learn from each other.

The Ovarian Cancer Registry was started by Larry Maxwell, INOVA Gynecology Department as part of the DOD Gynecology Cancer Center of Excellence. Women with a history of ovarian, peritoneal, or tubal cancer are invited to join and contribute data through the Registry which is a type of clinical trial. Women in the study will also be surveyed for ongoing quality of life issues and have the opportunity to learn about new studies and new initiatives. With our combined voice, I am hopeful we will be invited to participate in formative work- to guide future research questions, clinical trials, and the education that we as survivors need and want. . To learn more about the goals of the registry visit https://ocr.endgyncancer.com/ to register or read the consent form please visit https://ocr.endgyncancer.com/join/. I am pleased to join this initiative as a blogger along with Annie Ellis, Teri Woodhull, Susan Leighton, and Kristina Abalos.

The Registry, is separate from, but supports Globe-athon, the global effort to end gynecologic cancers. Globe-athon hopes "to increase awareness of women’s cancer, address disparities, and transcend barriers (i.e. ethnic, racial political, geographic, financial, cultural and religious) through educational outreach, global community engagement, and by advancing research." Part of building this community is having ovarian cancer survivors share their experience and thoughts. Our blogs will be housed here; check this page to read the blogs that are posted to date.

In the future women will also have the opportunity to have more private conversations through a partnership between the Registry, Globe-athon and Smart Patients, an online community for patients and families affected by a variety of illnesses. I'll update you all when that partnership begins.

We have so much to offer each other and I look forward to being a part of this new world wide community of women.


Dee
Every Day is a Blessing!



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Wednesday, March 28, 2018

#SGOmtg Twitter Highlights - Research Highlights Monday, March 26, 2018

Monday March 26th was another day of important presentations at the SGO Annual meeting. Some results may change treatment protocols going forward.

Here are the tweets I found of most importance.

 Cervical Cancer - Minimally invasive surgery *this one may change how early cervical cancer is treated

Ovarian Cancer Debulking Surgery


Ovarian Cancer - Niraparib and Pembrolizumab
Ovarian Cancer - Olaparib and Durvalumab



 Ovarian Cancer- Metastasis and DDR2 experssion

Palliative care
Survivorship / BMI and Risk

Lay navigation


Granulosa Cell tumors


Thanks Dr Dood, Erica Bednar, Annie Ellis, Ali Saiz, Alpa Nick, Rick Boulay, Erin Stevens and Kathleen Schmeler for sharing on Twitter during the meeting.

Dee
Every Day is a Blessing!

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Tuesday, March 27, 2018

#SGOmtg Twitter Highlights - Research Highlights Sunday March 25, 2018

Sunday was another busy day of information sharing at the SGO Annual Meeting in New Orleans.
Here are the topics that caught my eye while following the #SGOmtg hashtag.

Ovarian Cancer Maintenance Rucaparib - NOVA Study
Ovarian Cancer - Niraparib and Cost effectiveness
Ovarian Cancer - Parp inhibitor and BRCA status



Endometrial Cancer GOG 86 P Predictive biomarkers of endometrial cancer

Endometrial Cancer PORTEC3

Endometrial - GOG 249

Cervical Cancer - chemo /radiation


Thank you to Rick Boulay,MD, Jolyn Taylor, Don S Dizon, Douglas Levine MD,  Shannon Westin and Deanna Teoh, M.D. for tweeting using the #SGOmtg hashtag so those of us following from a distance can learn.


Dee
Every Day is a Blessing!

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Monday, March 26, 2018

#SGOmtg Twitter Highlights - Research Highlights Saturday March 24, 2018

Here are a few highlights from the  SGO meeting from Saturday March 24, 2018. Tweets of physicians and advocates I follow concentrated on:
LACK OF GYN CANCER CLINICAL TRIALS



OPIOID USE


IMPROVED OS OF MINORITY PATIENTS IN CLINICAL TRIALS



EVEROLIMUS/LETROZOLE IN ENDOMETRIAL CANCER


GOG244 LYMPHEDEMA STUDY


COST AND PARP MAINTENANCE


CHECK POINT INHIBITOR SIDE EFFECTS



SENTINEL LYMPH NODE IDENTIFICATION

 It was exciting for me to see an advocate - Meg Gaines - present at the meeting. We are making progress.
Thank you SGO, Amir Jazaeri, Rick Boulay MD, Kian Behbakht, Nicole D. Fleming MD, Shannon Westin, Erin Stevens, Joshua Garrett Cohen,  and Annie Ellis for tweeting from the meeting.


Dee
Every Day is a Blessing!
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