She Gave Many Hope

I first spoke with Lois Myers in early 2007.  She had been diagnosed in 1998 with stage 3 ovarian cancer and although she had a recurrence in 2005 she was disease free then. I had reached out to her to talk about getting involved with the Kaleidoscope of Hope Foundation. The Foundation raises funds for research and awareness of ovarian cancer and was founded in 2000 by Lois, Gail MacNeil and Patty Stewart-Busso. I went to the 2007 Awards Gala and later joined the Board. When I recurred in 2008 Lois supported my decision to have surgery first  and insisted that I remain on the Board through treatment.

 2009 KOH Awards Gala (Lois, Dee, Carole)

Lois was a driving force in NJ and even in Washington DC as she raised awareness and funds for an early detection test for ovarian cancer and ultimately a cure for the disease. She also gave me hope that I could live a long life. We left the KOH Board around the same time ( I rejoined the Board earlier this year) and we stayed in touch via e-mail and Facebook.

Sadly those occasional messages have come to an end. Lois passed away yesterday, November 29, 2016.

Over 18 years as an Ovarian Cancer Survivor.  She will be missed by her community of Teal Sisters and the entire ovarian cancer advocacy community. 

Rest in Peace Lois.

Dee
Every Day is a Blessing!

ASCO 2015 - Connections and Knowledge

Last night I returned home from attending the ASCO Annual Meeting in Chicago. The theme of the 2015 meeting was Illumination and Innovation. As a patient advocate who attended the largest oncology meeting in the world ( 30,000+ people) my theme for the meeting would be Connections and Knowledge.

Over the next week or so I will write a series of posts about my experience and the knowledge I learned. The topics will be:

Connections: 
Patient Advocates and Physicians
Hashtag Communities

Knowledge: 
Genomics
Immunotherapy
Big Data (CancerLINQ)
Value / Cost of treatments
Clinical Trials (Patient Reported Outcomes)
Survivorship

Please be patient as I gather the enormous amount of information I heard and posters I saw over the five days of the meeting and condense it into a reasonable length post. This will not be an easy task but an important one because what I heard gave me hope.

Dee
Every Day is a Blessing!

Biases and Cancer

A few days ago Dr Rick Boulay sent me a tweet with a link to his TEDx Lehigh River talk "Cancerism:  Confronting The Biases We Share". ( Dr Boulay is one of #gyncsm's healthcare advisors.) I watched the video and found myself saying "oh, that's me" and " I get it." and agreed that yes, we(patients) need hope. Please take a few minutes to watch this moving talk.



I knew the pain and suffering cancer caused as I watched family and friends go through treatment and die from the disease. I carried biases about the disease. So it isn't surprising that those biases were apparent when I was diagnosis.

My sister would vomit after chemotherapy. So when I heard I had ovarian cancer and would also need chemotherapy, what was I worried about?  Vomiting. That was it. I told my doctor I would do chemotherapy as long as I didn't have to throw up. She told me not to worry there were many new drugs to alleviate the vomiting that came with chemotherapy. And she was right except for one time which occurred right before my severe allergic reaction to carboplatin.

When I was in treatment I would not plan more than a month in advance.  I was living in 3 week segments. On week one I had chemotherapy then I had 2 weeks off and started all over again. I wasn't even sure I would get the chemotherapy treatment on time. My platelets or my white count could be low and then everything was pushed back. I had no control of my time. There were days I never got out of bed so those days just disappeared. When the weather started getting cold and my husband suggested I buy a new coat I said "no!". Why?  I was afraid to buy one. I had heard about Gilda Radner and she didn't make it. Chances were I wouldn't make it either. Why would I buy a coat I will never get a chance to use. It took me almost a year after finishing treatment to be able to plan more than 6 months in advance.


All of us - patients and healthcare providers alike - have preconceived notions about the disease. Patients are afraid and feel vulnerable. I know I was. What can we do to offer hope?

Dee
Every Day is a Blessing! 

Dee

ASCO - Patient and Survivor Care

Part four in my ASCO report. 

I spent time chatting with researchers and reading many posters related to patient survivorship issues at ASCO. It pleased me that researchers were spending time looking at quality of life, anxiety , sexual function , support efforts, hope, obesity and improving side effects. 

Obesity

The researchers looked at obesity and survival in ovarian cancer patients. They compared 130 obese vs 240 non-obese women with the disease. The time to recurrence was identical at 15 months in both groups. They concluded that obesity does not impact time to recurrence. (Abstract 5049)

Quality of Life/ Hope 

This longitudinal study by researchers from the Cancer Treatment Centers of America studied whether changes in quality of life could predict survival in ovarian cancer patients treated in an integrated model. There were 137 patients in the study and included newly diagnosed and those with recurrences. Quality of Life questionnaires were completed at initial visits and at 3 months of treatment. Preliminary evidence showed that patients with improved quality of life at three months had significantly longer survival. (Abstract 5049)

Researchers from Germany used a questionnaire to study sexual function in ovarian cancer patients. The study included over 700 women. Half of the women reported they were not sexually active. Results showed that sexual activity was impaired in women with ovarian cancer but that it did not impact their quality of life. The researchers concluded that a shift in priorities regarding anxiety due to cancer survival may have impacted the results.(Abstract 5051)

A longitudinal study by MD Anderson researchers studied ovarian cancer patients at MD Anderson, an academic cancer center and a community hospital. Results showed that underserved patients in the community hospital setting had poorer quality of life and that the future depended on “luck” or “others”. than those at the cancer centers. ( Abstract 9134) This is the poster of the work Dr L Ranondetta described at the Grand Rounds at St Peters University Hospital in May.

The Lance Armstrong Foundation researchers fielded a LiveSTRONG Survey for People Affected by Cancer. The survey looked at post treatment concerns and treatment summaries. Results showed that only one third of the patients received a treamtnet summary. Those patients that did receive a summary had a variety of positive outcomes. ( Abstract 9136)

Therapy management/ Anxiety

A German Study surveyed 676 ovarian cancer patients  regarding their expectations and needs about their therapy and doctor /patient communications. They found there is a high need of patients to discuss all details of treatment options and clinical management. the three most important aspects were “More time for discussion”, “therapy should not lead to hair loss” ad “therapy should be more effective”. 

(5044)

Side Effects/ Hair loss

This prospective study of chemo induced hair loss with and without scalp cooling was done by researchers in Canada. Researchers studied 130+ women with and without a scalp cooling device.  The study used  a survey and photos were taken before treatment,at 3 cycles and at the end of treatment. The result showed 49% of women who used the scalp cooling described their  “Success” as none or little hair loss . While 4% of women who did not use the scalp cooling had “Success”.   Hair stylists reported “success at 34% for those using the cooling device (Abstract 9138)

Dee

Every Day is a Blessing!

Celebrating Hope and Giving Back to The Cancer Institute of New Jersey

In July of 2005, I heard the words “ You have Stage 3 ovarian cancer”. My gynecologic- oncologist at the Cancer Institute of New Jersey ( CINJ) told me that I should not look at the survival statistics for ovarian cancer because statistics are just that statistics not individuals. Then she told me she would do her best to make me well.

Well, here we are in 2012 almost seven years later and the doctors at CINJ have made me well not just in 2005 but again in 2008. Currently, I am disease free. I am certain that taking part in the CINJ clinical trial lead by Dr. Lorna Rodriguez and the outstanding treatment and follow-up care by Dr. Darlene Gibbon has made the good health I experience today possible.

In the past I have asked you to donate to other organizations in support of ovarian cancer awareness and research. This year during the month of February, Ovarian Cancer Awareness Month in New Jersey, I am asking you to directly support the ovarian cancer research that is taking place at CINJ by donating to the Cancer Institute of NJ Foundation through my personal fundraising campaign. I hope to raise $5000 so the doctors and scientists can continue their research to better understand ovarian cancer, develop new treatments and find a cure .

As a special thank-you, I will mail a note card of my painting called “Hope” to the first forty-five donors. You can see a photo of the note card on my donor page at

http://cinjfoundation.donordrive.com/event/deesparacio/ . If you prefer you may also go to that page and print out a form and mail in your donation.

Thank you in advance for your donation.

Sincerely,

Dee

PS- The relative five year survival rate for late stage ovarian cancer is 30%. )

Dee

Every Days is a Blessing!

Live,Laugh, Learn at CINJ's Survivors Day Celebration

Yesterday I attended the Cancer Institute of New Jersey's (CINJ) Survivor Day celebration called Live,Laugh, Learn. I did Learn at the sessions on Vitamins, Minerals &Herbs and Relax to the Max. And I did Laugh as Bruce Feiler, cancer survivor and author of The Council of Dads told his story at lunch . Live, well I would change that word to Hope. Let me explain.

One of the sessions I signed up for was called "Under the Hood". It was a laboratory tour and presentation by two researchers at CINJ.

One lab we toured was that of Kathleen Scotto, PhD. Her research focuses on agents that target the genes on the surface of tumor cells that cause drug resistance. She is working with cell lines from Henrietta Lacks ( The Immortal Life of Henrietta Lacks,) known as HeLa cells. HeLa cells have a unique trait that allows them to be grown in the lab. And that is just what has been taking place since the mid-1950's. HeLa cells were used by Jonas Salk to develop the polio vaccine. I was thrilled that Dr Scott allowed us use a microscope in her lab to see these cells.

The other lab we toured was that of Hatem Sabaawy, MD,PhD. He is using Zebrafish to study the genes mutations that develop in blood cancers and prostate cancer. Zebrafish grow in a matter of days so results are quicker than studies done using mice. He also is raising "Casper" zebrafish that stay transparent to better see tumor growth when it occurs. There are about a dozen or so Zebrafish labs in the entire country completing these types of studies. And here is one at CINJ.

So I think this session was a session of Hope - hope for the future-right here in my backyard.

Dee

Every Day is a Blessing!

Hope and a Teal Tea

Yesterday was the Teal Tea foundation's 5th annual Teal Tea and the third year I attended. The funds raised will support ovarian cancer research at CINJ and Fox Chase Cancer Center.

This year I agreed to be a Table Captain. What did that involve? It meant that I had to decorate the table according to the theme of the year. This year it was Teal Cities of the World. I wasn't sure which city to pick- Rome ? London? . In addition to the city theme the decorations were to include the color TEAL.

I decided to pick London. I wanted to honor the British women who are my friends through this blog and through a group I belong to on Facebook. The feelings, hopes, treatments and concerns you have as an ovarian cancer survivor are the same no matter where in the world you live.

I spent the past month or so collecting different items to represent London. Then I decided to build a model of Westminster Abbey ( scene of the wedding of William and Kate). I finally found a balsam wood kit of the Abbey and aa telephone booth at Michael's Craft store. It took me a while to put the models together but a few days before the Tea they were done. And the finished product is what you see above.

The event yesterday was wonderful. Ann Gutos , survivor and Jenny Allen survivor and actress shared their stories of survivorship with courage and humor. During the invocation my doctor shared the definition of hope. I don't remember the exact words she used but one definition is "the feeling that what is wanted can be had." Yesterday was a day of Hope . My hope is that this tea will help find a cure.

Dee

Every Day is a Blessing. I was blessed to share the day with so many survivors including my friends Pam, Lynn.Lynn,Deirdre and my cousins Marion,Ali and Erica