Wednesday, April 12, 2017

Speaking Out About NIH Budget Cuts

I was invited by Rutgers Cancer Institute of New Jersey to speak at the press conference Senator Bob Menendez  was holding after he toured the Cancer Center.  The press conference highlighted the impact cutting the National Institutes of Health budget by 18% would have on researchers, oncologists and patients.

Here are the main points I made during the speech.


I am here today because of cancer research funded by the National Institutes of Health. The successful treatment of my cancer at the Rutgers Cancer Institute of New Jersey has been key to my survival. I was first diagnosed with stage three ovarian cancer in 2005, one of over 700 women diagnosed that year in NJ. After my surgery, I took part in a clinical research trial and after nine chemotherapy cycles, I was told I was disease free. When the tumor returned in 2008 I had surgery, 6 more rounds of chemotherapy and was once again disease free. The treatments I underwent were available to me because of research supported by the NIH.

In the almost 12 years since my diagnosis I have seen major developments in treating cancers like mine – all due to research funded by the federal government.

In 2006, a study was released that said intra peritoneal chemotherapy offered a survival benefit for women with ovarian cancer. We know this because of NIH funded research.
  
In 2011, the Cancer Genome Atlas, a project funded by the NIH, identified new mutations linked to ovarian cancer. This knowledge has led to new treatment strategies. We know this because of NIH funded research.

We saw the FDA approve a number of new therapies that specifically target ovarian cancer, reducing toxicity and maximizing anti-cancer efficacy.
We have these treatments because of NIH funded research.

Today work continues to develop immunotherapies to treat ovarian cancer.
We have these new developments because of NIH funded research. 
Progress is being made and now is not the time to reduce NIH funding.

A proposed 18% reduction in funding would stagnate key research and reduce the number of investigators trying to understand the causes of the disease and developing cures for many types of cancer. This in turn will impact the lives of many residents in NJ who have been or will be diagnosed with the disease in the future. 

As a Board member of the local Kaleidoscope of Hope Ovarian Cancer Foundation I have seen the impact grants can make in the career development of young cancer investigators. Many researchers supported by KOH have gone on to receive grant awards from the NIH. The Federal government’s support of cancer researchers, especially young investigators who wish to study rare cancers, is very important to me and other women who may develop gynecologic cancers in the future.

Cancer is not partisan, it does not care what religion you are, what the color of your skin is, what your age or sexual preference is. The only way we as a country will learn how to reduce our risk for disease, find better treatments, find a cure and  support survivors is through cancer research funded by the National Institutes of Health.  Thank you.


 Dee
Every Day is a Blessing! 


Monday, March 27, 2017

Cancer Support Community and Rutgers Cancer Institute of New Jersey Programs

I want to share with my readers two programs brought to you by the Cancer Support Community of Central NJ and Rutgers Cancer Institute of New Jersey .

A New Support Program:



This other program being offered I took part in a few years ago when I finished treatment for my recurrence. I learned exercise techniques and nutritional tips during Cancer Transitions that I still use today. You should definitely consider joining the 6 week series.




Dee
Every Day is a Blessing! Blessed that the needs of cancer survivors are being  addressed.

Wednesday, March 15, 2017

SGO Meeting Highlights via Twitter ~ Day 4, March 15

Updated with additional tweets 7:32 pm 3/15/17.

Today was the last day of The Society of Gynecologic Oncology (@SGO_org) Annual Meeting (#SGOmtg). Believe it or not as I type this the snow is falling again.

Here are some tweets I found interesting today.

Patient Preferences:
WRITE Symptoms Study (GOG 259):









Palliative Care:
Ovarian Cancer:

Cervical Cancer

A big shout out to all the researchers, gyn oncs, advocates  and others who tweeted from the meeting.Thanks! 

I look forward to April's  #gyncsm chat (April 12, 2017 at 9pm) recapping this year's meeting.

Dee
Every Day is a Blessing!



Tuesday, March 14, 2017

SGO Meeting Highlights via Twitter ~ Day Three, March 14, 2017

I am at home watching the snow fall and following Tweets from The Society of Gynecologic Oncology (@SGO_org) Annual Meeting using the hashtag #SGOmtg.

Here are some tweets fromTuesday, March 14,2017 ( Pi day!)

Other sources of Meeting coverage:
Endometrial Cancer
Ovarian cancer
GOG-3003 Compares pegylated liposomal doxorubicin (PLD) to PLD in combination with motolimod (a new type of investigational drug that stimulates the immune system)
     SOLO2 Trial studied LYNPARZA as maintenance treatment for women with BRCA-mutated metastatic ovarian cancer
GOG-212
Stress
Uterine Carcinosarcoma

Cervical Cancer
AXAL :Phase 2 study axalimogene filolisbac (AXAL), in patients with persistent or recurrent metastatic (squamous or non-squamous cell) carcinoma of the cervix 
General
So thankful for a glimpse via tweets of research that can change the future of women with gynecologic cancers.

Dee
Every Day is a Blessing!



Monday, March 13, 2017

SGO Meeting Highlights via Twitter ~ Day Two, March 13, 2017

More news from the The Society of Gynecologic Oncology (@SGO_org) Annual Meeting. I am at home and have been following Tweets from the meeting using the hashtag #SGOmtg.

Here are some tweets I found of interest today-  Monday, March 13th.

Endometrial Cancer:



Burnout in Gynecologic  Oncologists


Patient Centered Assessment Tool - Great work done by my friend and fellow advocate Annie Ellis.



IP Chemotherapy


Circulating DNA

 Niraparib
 Rucaparib

Genetic Testing

 GPI -  Glucose-6-phosphate isomerase

Neoadjuvant Chemotherapy


Slides from a Sunday presentation on  PARP

Thanks for all those tweeting from the meeting especially these folks

Looking forward to Tweets from tomorrow's meeting.

Dee Every Day is a Blessing!

Sunday, March 12, 2017

SGO Meeting Highlights via Twitter ~ Day One, March 12, 2017

The Society of Gynecologic Oncology (@SGO_org) is holding it's Annual Meeting March 12th -15th, 2017. I'm unable to attend in person, but I will be following hashtag #SGOmtg to catch the latest news and developments. My plan is to compile noteworthy tweets each day of the meeting and share those in a blog post. 

Here are some tweets I found of interest today-  Sunday March 12th.







So thankful for the advocates, gyn oncs and researchers sharing what they learn via Twitter. 

Dee
Everyday is a Blessing! 

#Trials4GynCancerNow - An SGO Campaign to Increas Gyn Cancer Clinical Trials

I wrote this blog post for the #gyncsm blog.  But I thought this topic is so important I needed to share it with my readers and others who may not be on Twitter. 

The SGO (Society of Gynecologic Oncology) is conducting their Annual Meeting March 12-15, 2017. You can follow research presented at the meeting by following the hashtag #SGOMtg on Twitter. Note that we'll discuss SGO Meeting highlights during our April 12th #gyncsm chat

During their annual meeting, SGO will be conducting a social media campaign to advocate for gynecologic cancer clinical trials. #gynscm is please to support this campaign and we hope you will join us.

There has been a steep decline in the number of clinical trials in gynecologic cancer since the restructuring of the NCI-sponsored cooperative groups in 2012.  Information about the campaign can be found in this SGO document.

You can join us as #gyncsm supports this campaign by tweeting the following starting on Monday, March 13th at 9:35am EST:
Women with #gyncancer deserve progress. Fund trials now @realDonaldTrump #Trials4GynCancerNow @SGO_org

Feel free to send additional tweets using #Trials4GynCancerNow to encourage increased funding of NCI trials. 

Thanks, 


Dee Every Day is a Blessing

Wednesday, March 8, 2017

The Threads of My Life



Graceful Hope was started by the Rocha family. Grace Rocha and her daughter Erika were both diagnosed with ovarian cancer and treated at Rutgers Cancer Institute of New Jersey,  were I was treated. Sadly Grace passed away in 2008 and Erika, initially diagnosed at the age of 16,  passed away in 2011.

I first met the Rocha family in 2012 when they asked me to share my survivor story at the 2nd Benefit. This past weekend I was once again honored to speak at the 5th Annual Graceful Hope Benefit for Ovarian Cancer Research. This year the funds raised were being presented to Rutgers Cancer Institute of NJ.

Here are portions of my speech - The Threads of My Life.

Speaking at the Graceful Hope 5th Annual Benefit

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Some survivors say Cancer is a Gift others say it most definitely is not. For me I think of Cancer as a thread in the fabric of my life and over the past 12 years many new threads have been added.

Graceful Hope has became a thread in that fabric starting in 2012 when I had the privilege of sharing my story with many of you. 
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In the late spring of 2005 I went to the ER for intense pain on the left side of my abdomen. That led to a series of tests and a referral to Dr Rodriguez at RCINJ. I woke up from surgery on July 29th to learn I had stage 3b epithelial ovarian cancer. I can still remember the words Dr. Rodriguez said to me as she left the recovery room - “ I will do everything I can to make you well.”  She offered me hope as I joined the almost 700 women who would be diagnosed in NJ that year.

She also offered me a phase 1 clinical trial of standard chemo along with selenium which I decided participated in. Nine cycles and 7 months later I was told I was disease free. The thread as survivor added to my fabric.

As my hair grew in and I became stronger I went to follow-up visits at CINJ.  I heard about the LiveSTRONG  Survivors Summit in Austin , Tx . Attending that summit weaved another thread in my story that of being an advocate.  It was an incredibly empowering experience and laid the groundwork for my involvement in a number of organizations, educating about symptoms and blogging .

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Life slowly returned to a new normal. I went back to work. I watched my son graduate college, my daughter receive her graduate degree and marry in May 2008.

In Oct that year, after a routine CT scan Dr. Rodriguez called me to say that my cancer had returned in two spots one on my liver the other on my spleen. This time I knew a lot more about ovarian cancer so I looked at the three treatment options I was offered and decided I would have surgery first – which included removing my spleen and resectioning my liver - and then six chemotherapy treatments. In the spring of 2009, I heard there was no evidence of disease.

I’ve gone back to yet another new normal, which includes spending time with family which grew by  two grandsons and a daughter-in-law , dog agility, and of course advocacy. I feel I have a responsibility to all the women diagnosed with ovarian cancer who are no longer with us to be their voice and to speak up for the needs of women dx with the disease. Since my recurrence a major portion of my time is spent on research advocacy work and supporting other survivors.

In 2013, along with another ovarian cancer advocate I cofounded the Gynecologic Cancer Social Media Community on Twitter which we call #gyncsm. And another thread was added to my life. Along with our co-moderators, three  gynecologic oncologists and a psychologist,  we hold monthly chats on topics of interest to those impacted by gyn cancers. Because of my work with gyncsm I’ve had the amazing opportunity to attended the Am Society of Clinical oncology Annual Meetings and became an advocate member of the society ...


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There are times the neuropathy in my toes bothers me.  Chemo brain frustrates me. And I still get anxious waiting for test results.  But the threads of my life have including many blessings. I’ve had the opportunity to meet amazing women diagnosed with ovarian cancer like Tina, Dawn and Terry.

In the past almost 12 years I have seen progress for women with ovarian cancer – new medicines, targeted therapies, IP chemo, recommendations that women with OC to receive genetic testing, research into immunotherapy and circulating DNA. And it is survivors, caregivers and friends  like you – those passionate about raising awareness and finding a cure that are helping make a difference. 

It is wonderful to be here as you celebrate your 5th event. The Graceful Hope family has weaved their thread into my life and my heart. Thank you.



Dee
Every Day is a Blessing!

Wednesday, February 22, 2017

CA-125xiety !

Recently there have been a number of articles written about "scanxiety".
You may read one written by an ovarian cancer survivor here.  Another was posted on Medscape aand titled Cancer 'Scanxiety' Is a Real (Terrifying) Thing. You may read it here.

In response to a tweet about that Medscape article I tweeted:

Well the past few days my CA-125xiety has kicked in.

This morning I went for the blood test so the results would be ready for my appointment with my gynecologic oncologist next week. Am I anxious? My brain says I shouldn't be nervous. I feel ok for the most part although I have been more fatigued recently. 

I've read many articles about screening using CA-125 and CT scans. One study reported last year in JAMA Oncology says, "CA-125 tests and CT scans are still routinely used for surveillance testing in patients with ovarian cancer, although their benefit has not been proven and their use may have significant implications for patients’ quality of life as well as costs".  I get it. My CA-125 result was in the normal range up a few points when I recurred in 2008. I shouldn't worry, yet I do. 

It is a funny feeling and hard to describe to one who has never been in this type of situation.  I am merrily going along in my new normal and then a sense of dread comes over me. I get anxious about finding the time to get things done. I hesitate making plans a year or two out. I start to rethink what brings me joy. What should I not be doing right now? What should be at the top of my priority list? Spending more time with family and friends goes back to the top of my list if other commitments were heading to the top.  I go on a cleaning out spree. I get rid of things I won't need if I recur. I get upset with people who "Sweat the small stuff".

I am uneasy because I know, maybe too much, about ovarian cancer. It is a sneaky disease. I know women who have gone years and out of the blue have a recurrence. Sure I can eat healthy and exercise but there is no magic pill that I can take to prevent my cancer from returning. How I wish there was.

It is difficult to get over this feeling. I try all those things that have helped me cope with this sense of apprehension in the past but I am not always successful. I will feel much better when the myQuest app sends me a notification that my results are ready to view. Good or bad at least then I will know.

Until then I will just try to enjoy each day.

Dee
Every Day is a Blessing! 

Friday, February 3, 2017

NJ/PA Spring Walks: NOCC, Sandy Rollman

 April 22, 2017 
13th Annual Sandy Sprint and SuperHero 5K/10K and Canine Sprint
Paine Park, Philadephia, PA
8am
Registration: http://srocf.convio.net/site/TR?fr_id=1040&pg=entry


May 6, 2017   
NOCC New York City and New Jersey Chapters’ 2nd Annual Tri-state Run/Walk
to Break the Silence on Ovarian Cancer®


11:00 AM  

Liberty Park,
1 Audrey Zapp Drive
Jersey City, NJ 07305


Registration: http://runwalk.ovarian.org/tristate 


If you have an ovarian cancer  walk / event you would like me to share on this blog please e-mail me the information. 
 
Dee 
Every Day is a Blessing!  

Thursday, January 26, 2017

Writing About Advocacy

I am pleased to share a piece I wrote on how to advocate for yourself and others. It appears on the SHARE Cancer Support Blog. Their mission is to create and sustain a supportive network and community of women affected by breast and ovarian cancers.

Use the link below to read A Bit of Advocate in All of Us.

https://www.sharecancersupport.org/2017/01/a-bit-of-advocate-in-all-of-us/

Be sure to check out the support programs and resources SHARE has to offer.

Dee
Every Day is a Blessing! 


Friday, January 13, 2017

NJ Events: Graceful Hope 5th Annual Benefit Dinner

 I am happy to be sharing another event in NJ to raise awareness and funds for ovarian cancer research. This dinner is being held by the Graceful Hope ovarian cancer organization. 




TICKETS ARE CURRENTLY ON SALE for GRACEful Hope's 5th Benefit Dinner to raise funds and awareness for ovarian cancer!

Date: Saturday March 4th, 2017
Location: PISC- Portuguese Instructive Social Club in Elizabeth, NJ

You may purchase them directly on link below.
link: http://gracefulhope.weebly.com/graceful-hopes-5th-benefit.html




Dee
Every Day is a Blessing!

Thursday, January 12, 2017

NJ Area Events : Teal Tea Foundation

As 2017 begins ovarian cancer foundations are planning events to raise awareness and funds for research. The Teal Tea Foundation founded by my friend, Jean Shipos, has a few early 2017 events- all teas, of course.

VALENTINE TEA
FEBRUARY 19, 2017 2:00-4:30PM
Talking Tea Cup
301 West Butler Avenue
Chalfont, PA 18914

$45 admission includes four course tea, entertainment & basket raffles
 Advance online registration required- no tickets at the door- limited seating
ALL SALES FINAL, NO REFUNDS

https://valentinetealtea.eventbrite.com

ST PATRICK TEA

MARCH 19, 2017
Talking Tea Cup
301 West Butler Avenue
Chalfont, PA 18914
 $45 admission includes four course tea, entertainment & basket raffles
Advance online registration required- no tickets at the door- limited seating
ALL SALES FINAL, NO REFUNDS
TICKETS ON SALE TIL MARCH 14, 2017

https://marchafternoontealtea.eventbrite.com

TEAL TEA

May 7, 2017
John Henry’s in Hamilton Township, NJ. 
11th Teal Tea. Theme:  The Sun Will Come Out TEAL-morrow!
Check their website in the future for information. 

  
If there are other organizations that would like me to share their events please e-mail me the information .

Dee
Every Day is a Blessing! Blessed to have so many organizations in NJ raising funds for research. 

Sunday, January 1, 2017

Welcome 2017!

Getting to start a New Year is a real blessing!

If you've read my first posts of the year going back a few years you see that I aspire to things. Some aspirations stay the same from year to year.

I aspire to continue to support other women who are diagnosed with ovarian cancer, to share my story as an ovarian cancer survivor and to promote ovarian cancer research. Some of how I do that might have to change this year because...

I aspire to spend more time with my daughter and her family and my son and his wife. In the Spring my daughter and her family will be living within 4 hours - the closest she has been since she got married nine years ago. I just can't miss the opportunity to spend time with them.

I aspire to build an even better bond with my dog Amber so we can compete at the masters level in agility.

I aspire to travel with my husband and visit at least 2 states I have not visited before. Maine is one of the two. Yes, this was on my 2016 list too. I am not sure what the other state will be.

I aspire to learn a new arts and craft technique. I love to paint so I hope to do that but I'd like to try something new too. That way I can make some more gifts for Christmas next year. 

I aspire to find a way to give back in my community or church.

I wish everyone good health , peace and joy in 2017!


Dee
Every Day is a Blessing!