Wednesday, June 28, 2017

Research in Your Backyard - NJ

PhRMA ( the Pharmaceutical Research and Manufacturers of America) released their report on clinical trials in NJ today. Research in Your Backyard: Developing Cures, Creating Jobs, Pharmaceutical Clinical Trials in New Jersey (RIYB)was presented at a Roundtable event co-hosted by the  HealthCare Institute of New Jersey (HINJ)  and We Work for Health NJ (WWFH-NJ) at Rutgers Cancer Institute of New Jersey.  I attended the event and was honored to share my experience with clinical trials with those in attendance. 

Below are highlights from the report presented by Emma Van Hook, Directory of Policy & Research, PhRMA :
  • Since 2004 there have been 4,967 clinical trials completed in NJ. 
  • There were 314 cancer clinical trials during that time period. 
  • 25,127 New Jersey patients participate in clinical trials around the state, generating $617 million in economic growth.
  • The average cost of developing a new drug is ~ 2.6 billion dollars. 
  • Half of the cost of developing drugs ( ~$1.3B) is clinical trials.  
  • The biopharmaceutical industry supported more than 378,000 jobs in NJ.
For more report details please see:

Dean Paranicas, President and CEO of Healthcare Institute of New Jersey shared information on the biopharmaceutical industry in NJ.
  • New Jersey is home to more than 3000 life sciences companies. 
  • Thirteen of the top 20 research-based biopharmaceutical companies in the world are headquartered or have a significant presence in NJ. 
  • There is a long history of collaboration between local academic and health care institutions in the state.
  • It takes 8-12 years to develop a drug, complete clinical trials and receive FDA approval.
  • 12% of drugs that start the development process are successful.
You can find additional information at

Additional speakers included Michele Sharr, Director, Oncology/Hematology, Celgene Corporation who spoke on Industry Research in NJ and Shridar Ganesan, M.D., Ph.D., Associate Director for Translational Science and Chief, Molecular Oncology, Rutgers Cancer Institute of New Jerseywho spoke about A View of Academic Research in NJ.

"Clinical trials are beneficial to patients, the economy and science. "- RIYB
I have been blessed with almost 12 years of survivorship and participating in clinical trials has been an important part of the survivorship.

Every Day is a Blessing!

Thursday, June 22, 2017

Our Way F>>ward - Survey Summary

Between April and May of 2017 a survey was conducted online on behalf of TESARO, Inc. by the Harris Poll. This One Way Forward survey included 254 women living with ovarian cancer and 232 physicians who treat ovarian cancer patients. The survey was developed with input from OCRFA and NOCC.

Here are some highlights from the survey:

  • 53% of the women said their diagnosis had a severe or very severe impact on their lives.                                                           
  • 87% of the women who had experienced a recurrence said the thought of cancer returning was overwhelming 
  • 34% of the health care providers were unsure if or did not feel that they give their ovarian cancer patients all the information they need  about Ovarian Cancer

Most interesting to me was the survey results when it came to communication.

  • 91% of health care providers said they discuss expectations of treatment often or at every visit while 40% of the patients reported they had the discussion.                                                      
  • 69% of health care providers said they discussed recurrence often or at every visit while  38% of the patients said they discussed recurrence often or at every visit.

It appears that we have a ways to go to make sure patients have the information and support we need, when we need it most. 

You may find additional information on the website

Every Day is a Blessing! Thank you TESARO for researching the needs of the ovarian cancer community.  


Monday, June 5, 2017

#ASCO17 Twitter Highlights

I was not able to attend this year's ASCO Annual Meeting in Chicago so instead I followed the latest oncology news from the meeting via Twitter (#ASCO17).  I appreciate all the attendees who used the #gyncsm hashtag too.

Below find the tweets I found most interesting in the areas of gynecologic cancers, social media and survivorship.

Let's start first with how to read cancer related news:
Patient Reported Outcomes Leads to Improved survival
Impact of HPV vaccinations:

PD-1 Pathways in Gynecologic Cancers: 

Progress in High Grade Serous Ovarian Cancer:

Liquid Biopsy

Parp Inhibitors in Ovarian Cancer:

Resection of Recurrent OC:

"ICON6 is designed to evaluate the safety and efficacy of platinum-based chemotherapy in combination with cediranib in women with platinum-sensitive relapsed ovarian cancer . Cediranib is an oral targeted small molecule inhibitor of a key signalling molecule Vascular Endothelial Growth Factor (VEGF) which is an oral inhibitor of tyrosine kinase (TK) activity and acts through blockade of the TK receptor. Cediranib (AZD2171)" source :

OC risk reduction w/ BRCA mutation:

BRCA testing - ovarian cancer:

Endometrial Cancer and Genetic Testing:
Homologous Recombination Deficiency:

Germline Testing:

Abstract 1524

from this study


Screening for OC:

Fallopian Tube /Ovarian Cancer:

Based on this study:

Social Media:

session description-
Li-Fraumeni Syndrome:

Cost of Care:

I hope I'll get the opportunity to report live from ASCO 2018.

Every Day is a Blessing!

Wednesday, May 31, 2017

When News Triggers That Old Fear

By now most people have heard that Olivia Newton-John's breast cancer has returned this time in her lower back. (USA Today) It has been 25 years since her initial diagnosis. Breast cancer metastasizes and it is not unusual for women to be disease free for five, ten, fifteen years and have the disease return. There is a organization METAvivor whose focus is to do just that and to support women who are living with disease. 

Did you know that Ovarian Cancer can recur - months and years later? I know women who have dealt with single recurrences and some with multiple recurrences. Some women are in constant treatment just like those with metastatic breast cancer.

Yes, there are new drugs being developed to treat the recurrences and target specific mutations but just like with breast cancer, more research is needed. But being diagnosed with a disease that can recur at any time brings along with it other issues to deal with too.

My first reaction to hearing about Olivia Newton-John was sadness and then the fear took hold. I could feel that strange tightening in the pit of my stomach. And then my thoughts took off to a place that I try very hard to keep in check. Damn. I could recur at any time.

I've been really tired lately.  ( Could be my allergies.)
My lower back started hurting a few days ago. ( Could be bending to pick up my grandsons.)
My digestive system still isn't right since the stomach bug I had two weeks ago. ( Could just be it is taking that long to clear up.) 

I take a deep breath. And then another and finally slowly get hold of myself.  I know that my gyn onc will see me in a few months for my regular check-up. I know that if these symptoms continue for two more weeks I can always give her a call and see her early. Alright I have a plan. Once I have a plan I am good.

Being disease free is not being worry free. That is a side effect that can come on at any time.
How do you handle your fears of recurrence?  

Every Day is a Blessing!

Friday, May 26, 2017

2017 Annual Retreat on Cancer Research Public Forum Highlights

I was pleased to have the opportunity to attend yesterday's Public Forum segment of the 2017 Annual Retreat on Cancer Research in New Jersey presented by the Rutgers Cancer Institute of New Jersey (RCINJ) and the New Jersey Commission on Cancer Research. This years Forum topic was Precision Medicine. The Event took place at the Rutgers College Avenue Student Center.

After an introduction and welcome by Shridar Ganesan, MD, PhD (RCINJ),  Dr. Kim Hershfield spoke on The Promise and Practice of Precision Oncology. After a short review of the structure of the cell and DNA, she described how oncogenes and tumor suppressor genes work. In the past, treatments were based on the organ where the cancer was found and the cancer's histology. Today knowledge of a tumor's gene mutations can lead to the use of a targeted therapy. Knowledge of the mutations that can cause a cancer has increased in the past few years and researchers like those at RCINJ are working to understand the impact of those mutations and develop targeted therapies for them.

Another avenue of recent study is the use of a  liquid biopsy. With a liquid biopsy, a blood sample is examined for circulating DNA from a cancer tumor.

As Dr. Hershfield mentioned Precision Medicine is at the "toddler" stage.  But every day researchers are looking to develop new treatments, test combination therapies, understand and reduce side effects, understand pathways, all with the goal of providing the best treatments for cancer patients.

The second speaker was Hetal Vig, MS a genetics counselor from RCINJ who spoke on Capturing the Spectrum of Hereditary Cancers: A Moving Target in the Setting of Targeted Therapy. Cancer may develop due to mutations that are germline ( hereditary) or sporadic. When examining a patient's family history it is important that both the maternal and paternal sides of the family are examined.

As an example, Ms Vig mentioned how BRCA mutations increase a person's risk for breast, ovarian and pancreatic cancers. Every person has two of each gene. When you have a germline mutation the mutation comes from the egg or sperm. If you are born with a BRCA mutation in one gene and over time you should develop a BRCA mutation in the second gene you can develop cancer. When you have a sporadic cancer  you are born with no mutations in either gene but over time for some reason both your genes develop a BRCA mutation which can lead to cancer. So there are less steps to go through when you start out with a hereditary mutation to develop cancer. And it also explains why most sporadic cancers develop later in life since it takes more time for the mutations to occur.

Ms Vig also talked about incidental findings on genetic testing results. A framework needs to be developed regarding how to share those findings with patients. Interpreting the complex genetic test results many patients receive should be done by a trained genetic counselor.  (I agree 100%.)

The final speaker of the morning, Dr Eric Singer , RCINJ spoke on Ethical Issues in Precision Oncology. Dr Singer's talk began with a discussion of clinical trial design and informed consent. Do patients really know that the trial they are taking part in is for research and may not offer them any benefit? Dr Singer also mentioned incidental findings and how those findings should be shared with patients. Dr Singer mentioned that is is important that health care providers protect patients from misinformation.

He also stressed the need for oncologists to know their patient's goals. Part of the discussion could include the cost the patient will have to bear when taking new expensive targeted therapies.The patient / health care provider discussion could include: Will the treatment extend survival? Will the treatment have toxic side effects? What patient reported outcomes have other patients provided? Is the decision to use the treatment performance-based or value-based?

I was happy to see in each of the presentations the patient being central to the treatment decision. 

After the Forum I took some time to view the posters outside the Multi-purpose room. Here is one of particular interest to those with ovarian cancer.

Impact of Body Mass Index on Ovarian Cancer Survival Varies by Stage
Elisa Banderas et al
This study looked at the impact of obesity on ovarian cancer survival
It included over 1100 women with epithelial ovarian cancer diagnosed between 2000-2013 at Kaiser Permanente Northern California. "There was no evidence of an association between BMI( body mass index) on overall or ovarian cancer-specific survival" but they found a strong association by stage.
Conclusion: "Associations of obesity with ovarian cancer survival differ by stage, with decreased survival among those with localized disease and increased survival among those with late-stage disease. "

I look forward to next year's Retreat.

Every Day is a Blessing! Thankful for the doctors, researchers and staff throughout the state of NJ who are striving to understand cancer and make their patient's lives better. 

Tuesday, May 9, 2017

Public Forum - 2017 Annual Retreat on Cancer Research in NJ

The Annual Retreat on Cancer Research in New Jersey is hosted by the Rutgers Cancer Institute of NJ and the New Jersey Commission on Cancer Research. The event includes poster sessions and mini-symposium on research by expert NJ researchers.

The day also includes a Public Forum. I have been lucky to have attended a few of the public sessions over the past few years. Last year's public forum topic was Survivorship. This year, the topic is Precision Medicine.

The topics of discussion will be:
The Promise and Practice of Precision Oncology
Capturing the Spectrum of Hereditary Cancers: A Moving Target in the Setting of Targeted Therapy
Ethical Issues in Precision Oncology.

This years event will take place on May 25, 2017  (8:30-10:00 am) at the Rutgers College Avenue Student Center.

Registration is free.
Please register on the following website:

I've already registered for the event. How many of my fellow advocates and survivors will join me?

 See you on the 25th!

Every Day is a Blessing!

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.

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.

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.

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
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 
So thankful for a glimpse via tweets of research that can change the future of women with gynecologic cancers.

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


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. 

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. 


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

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. 
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 .

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 ...

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.

Every Day is a Blessing!