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.

NJ's Regional Moonshot Summit

Yesterday hundreds of researchers, oncologists, advocates,  insurance and pharmaceutical industry representatives met at Howard University in DC for the Cancer Moonshot Summit.

Here in NJ running concurrently with the DC meeting we held a regional Cancer Moonshot Summit.  As in DC advocates, insurance and pharmaceutical industry representatives, oncologists and others met at the Cancer Support Community Central New Jersey (CSCCNJ) to discuss the initiative. Cancer Support Community is a partner in the Moonshot Initiative lead by VP Joe Biden. The Regional Summit was co-sponsored by Rutgers Cancer Institute of NJ. This regional Summit was an excellent way for individuals to share their ideas and provide input to the  White House Cancer Moonshot Initiative.

The NJ Summit included watching VP Biden's speech from DC and a panel discussion. The panel included D. Toppmeyer, MD Rutgers Cancer Institute of NJ, U. Dugan, MD, PhD Bristol Myers Squibb, E. Levine LCSW, W. Wengel III Aetna, D. Gonzalez, US Dept of Health and Human Services and myself.

Panel participants .
Photo courtesy of @RutgersCancer

We discussed putting patients at the center - how to improve the experience of patients when initially diagnosed, after treatment as well as those treating cancer as a chronic illness as well as how to insure the information patients read online is accurate.  We also discussed the best way for oncologists in a community setting to be on top of the latest treatments and clinical trials. We ended with a short discussion of how to recruit patients to clinical trials and dispel the myths associated with clinical trials.

I was honored to be a part of this initiative. I am usually the one Tweeting from conferences but multitasking at this event was a bit of a challenge. So I share this Tweet with you. 

Regional #CancerMoonshot summit: Dee Sparacio patient advoc. & survivor talks about the patient experience #CanServe pic.twitter.com/ye3D5jLTdN

— RutgersCancerInstNJ (@RutgersCancer) June 29, 2016

I have also submitted ideas to the Cancer Moonshot through the website. Do you have an idea? The site is live until July 1,2016 

As VP Biden said "This is Urgent" and I agree . This initiative gives me hope that we will develop a screening test.

Dee
Every Day is a Blessing!

Your Immune System and Cancer Treatment - Cancer Support Community Free Progam

Research into developing  immunotherapy treatments for various cancer has increased dramatically over the past few years. Here is a link to an article on the immunotherapy treatments for advanced melanoma and cervical cancer that were highlighted at the 2014 ASCO Annual meeting. 

In an effort to inform patients about immunotherapy treatments a free workshop on your immune system and immunotherapy as a cancer treatment will be presented in NJ.

Thursday , April 16, 2015

6:00-8:00 PM 

Bridgewater Manor

1251 US 202/206 

Bridgewater NJ

Dinner will be served.

Registration is required . Please contact Cancer Support Community Central Jersey at (908)-658-5400 to register (www.cancersupportcnj.org) .

Please click on the image above for speaker information and sponsors of the event.

Dee
Every Day is a Blessing! 

As September Comes To An End

It is hard to believe that September 2014 is coming to an end. I was away for the first half of the month so I missed doing my usual awareness activities. 

I did though still hang my teal ribbon flag and join Graceful Hope for their walk. And on Thursday, I went to the Lunch and Learn at the Cancer Support Community of Central New Jersey. Dr Tchabo, Atlantic Health, spoke about the latest research and treatments for ovarian cancer, cervical cancer and uterine cancer. Although I missed a few events, I experienced a lot of what September as ovarian cancer awareness month means to a survivor- learning about the disease, raising awareness, honoring fellow teal sisters and remembering the lives cut short by the disease.

This morning I was thinking to myself how things have changed in the past 9 years. It has been a gradual change but I think a change for the better. Teal ribbons on trees are no longer rare thanks to thousands of  Turn the Towns Teal Foundation volunteers throughout the state and country. This year more news channels had segments focusing on ovarian cancer like this segment on channel 7 featuring my friend, Valisia LeKae.

More newspapers throughout the country shared stories about walks and focused on stories of survivors. 

Kaleidoscope of Hope Avon, NJ Walk- photo:J. Flaherty

Buildings and bridges in places like Philadephia, Birmingham, Huntsville and around the US were bathed in teal lights. 

Boathouse Row Philadelphia, PA - photo Sandy Rollman Ovarian Cancer Foundation

Even with this awareness the 5 year relative survival rate (SEER data) for ovarian cancer is 44.6% and for women with late stage disease the rate drops to 27%. 

What can I do? What can you do? September may come to a close but I will not stop raising awareness of this disease. I hope you won't stop either. I will continue sharing information about symptoms. I will continue to stress that women, diagnosed with ovarian cancer, be treated by gynecologic oncologists. I will still tell women that every woman is a risk. And I will continue all year long to advocate for more funding for ovarian cancer.

In another 9 years I want to be able to write "The 5 year relative survival rate for ovarian cancer has risen dramatically from  44.6% to over 80% ". 

Dee

Every Day is a Blessing! 

Two Women of Teal Can Make a Difference

On Monday, I attended a Lunch with a "Twist of Teal" held at the Cancer Support Community - Central New Jersey in Bedminster, NJ. A lunch of delicious wraps and salads was served to participants who met in the comfy main house. The meeting was billed as a time to share ideas about future programs for gyn cancer survivors at CSC.

This luncheon occurred because of two women, Lynn Franklin and Carole Fagella. Two survivors who cared enough about their fellow gynecologic cancer survivors to approach Ellen Levine, program coordinator at CSC and ask about having a gathering of survivors and possibly reinstating the gynecologic cancer support group that had been discontinued because of low of attendance. (I attended this group regularly when I finished treatment in 2006 and continued until 2010 when I moved an hour away from CSC.)

More than 15 gynecologic cancer survivors shared a meal and their stories. The hour long lunch lasted almost 2 hours as the women introduced themselves, shared advice, information about dealing with side effects and clinical trials. When Ellen asked if the women would like to meet again there was a resounding "YES!".

I am thrilled that gynecologic cancer survivors will once again have an support group  at the CSC. They will meet the 3rd Monday of each month. Call 908-658-5400 for more information.

Thank you Carole,  Lynn. And Thank You Ellen and the staff of  CSC for providing a place for gyn cancer women to meet and share !

Dee
Every day is a blessing!

Lunch with a Twist of Teal

Calling all NJ gynecologic cancer survivors...

Click on the image for a larger version.

I plan on attending and hope to see some new faces and some old friends too.

Dee
Every Day is a Blessing!

A Weekend of Butterflies and Lipstick

This past weekend was great one for survivors in NJ.  The weather was great and the feeling of connectedness to other cancer survivors was strong.

Saturday:
 I attended the Wings of Hope event in honor of National Cancer Survivors Day at the Cancer Support Community-  Central New Jersey in Bedminster. I have participated in CSC-CNJ programs since 2006. The day began with a Walk for Hope.  Origami butterflies purchased to honor or in memory of a loved one diagnosed with cancer were displayed on sheer curtains There were tables of crafts for children, a drumming circle, a basket auction and lots of water and Rita's ice. The sun was bright and the temperatures were in the 80's.

I was thrilled that my two good friends and ovarian cancer survivors Carole Fagella and Lynn Franklin received this year's Spirit of Courage Award for their work as advocates raising awareness of ovarian cancer. Congratulations Carole and Lynn!

Spirit of Courage awardees

Sunday:
The Cancer Institute of NJ's National Cancer Survivors Day Celebration took place at the Hyatt Regency in New Brunswick on Sunday morning.

I was so excited to see so many survivors in the ballroom. And was thrilled that so many oncology nurses and social workers came to celebrate with us.  The event began with a delicious buffet meal and a welcome by the Director of Oncology Nursing Services Janet Gordis-Perez. She introduced the keynote speaker Geralyn Lucas. ( Check out Geralyn's video about getting a mammogram .)

Geralyn Lucas

Geralyn is a seventeen year breast cancer survivor and author of the book Why I Wore Lipstick to my Mastectomy. She told us how she found her "inner cleavage" and described the interaction she had with her cab driver on the way to her mastectomy. She made us laugh and she made us tear up when she invited other breast cancer survivors up to the stage to put on lipstick and share how they celebrate life.

I think this was my forth or fifth time at the CINJ Survivors Day celebration. And the first one where i felt a bit sad at the end.  Last year the ladies from my support group and their caregivers filled a table.This year it was Nick and I and one other ovarian cancer survivor.  I sure do miss Pam, Rita Kay and Ann.

Dee
Every Day is a Blessing!

From Family to Frankly Speaking to Patient Centricity

It sure has been a busy week for me. We returned home from seeing my daughter and her family in Kansas early in week. It was great attending my son-on-law's change of command ceremony

and being able to spend time playing and reading to my grandson. They will be moving in two weeks to California for Andy's next assignment.  I thrilled that I will be able to visit them in sunny California later in the year.

Then I jumped right back into  my role as a survivor and advocate. On Wednesday,  the Cancer Support Community - Central New Jersey invited my gyn-onc,Dr Gibbon to present a noontime Frankly Speaking about Gynecologic Cancers presentation. There were about a dozen women in the audience so it was very easy for it to be more of a chat with questions and answers than a lecture. Dr G did a great job making the science of ovarian cancer and it's treatments understandable. Some of the topics she spoke about were risk factors, current treatments, genetic testing, precision medicine, vaccine therapy and parp inhibitors. 

Thursday I spent time prepping for my participation at the 10th Annual Patient Summit USA 2013. I was invited by Wego Health to be part of a panel discussing patient centricity. 

The Summit day arrived on Friday.  I drove the hour into Philadelphia to the  Hilton and was able to attend the morning sessions which included talks on understanding your patient as the end-user, proving the value of patient programs and an excellent presentation by Emily Freeman, Pfizer on Shared Treatment Decision Making(STD). STD brings the patient on an equal standing to the physician regarding treatment for chronic illnesses. Then a bit of deja vu occurred when Walter Berghahn spoke about supply chain safety with a focus on drug packaging. ( I worked in packaging for a number of years.) He highlighted ways to achieve better patient adherence. 

At lunch I met up with the Wego Health team and health activists. I am in awe of the advocacy work and endevours of these activists. Then it was time to take the stage with Melissa Barnhardt, Wego Health, Tiffany Westrich an autoimmune rheumetoid arthritis activist ( www.iaamovement.org)  and Scott Benner a diabetes activist (www.ardensday.org). 

I offered the following recommendations to the audience from the pharmaceutical industry:

• Patient centricity is about treating the whole person not just the disease.
• Speak to patients in laymen's terms.
• Use infographics to explain information and processes
• Reach out to Advocacy groups to diseminate information.

I am so pleased to have been a part of the movement to give patients a voice. Thank you Wego Health.

Dee
Every Day is a Blessing!

Frankly Speaking About Gynecological Cancers ~May 1, 2013

Frankly Speaking About Gynecological Cancers

Wednesday, May 1, 12 -1:30 pm

Guest Speaker:  Darlene Gibbon, MD, Clinical Director of Gynecologic Oncology, Cancer Institute of New Jersey

Dr. Gibbon will offer information on the latest research, treatments and side effect management to optimize your quality of life during and after cancer treatment.  A light lunch will be served.

Preregistration required. Contact elevine@cancersupportcnj.org or 908-658-5400

I hope to be able to attend this program presented by my gyn-onc. I hope to see you there. 

Dee

Every Day is a Blessing!

CSC-CNJ Program: Frankly Speaking About Gynecological Cancers

Frankly Speaking About Gynecological Cancers

Wednesday, May 1, 12 -1:30 pm

Guest Speaker:  Darlene Gibbon, MD, Clinical Director of Gynecologic Oncology, Cancer Institute of New Jersey

Dr. Gibbon will offer information on the latest research, treatments and side effect management to optimize your quality of life during and after cancer treatment.  A light lunch will be served.

Preregistration required. Contact elevine@cancersupportcnj.org or 908-658-5400

Cancer Support Community Central New Jersey

3 Crossroads Dr.

Bedminster, NJ 07921

I have been to this program in the past and always come away having learned something new. 

Dee

Every Day is a Blessing!

Word Games are Good !

Playing Words with Friends ® is not only fun but may help with the "chemobrain" I have been experiencing.

That is just one of the many interesting things I learned last night during the program "Am I Just Forgetful or is it Chemobrain? A Discussion of Post-treatment Cognitive Changes" presented by Sheri Suozzo, RN at the Cancer Support Community -  Central New Jersey. Sheri is an oncology nurse and shared information available on the  Oncology Nurses Society website. Here are highlights from the talk and the handout she provided:

• "Chemobrain" is the laypersons term for cognitive impairment. Cognitive impairment (CI)  is defined as "a decline in function in single or multiple domains of brain function, such as attention and concentration, executive function, information processing, languag, visuospatial skill, psychomotor ability learning and memory". 
• 11-80% of cancer patients in treatment report incidences of CI. 
• 20-30% of cancer survivors report CI well after treatment is completed. Many patients see an improvement in CI approximately 12 months after finishing treatment.
• There is no standard neurological test for CI in cancer survivors.
• There is no standard treatment for CI in cancer survivors. 
• The mechanisms of CI  include neurotoxic effects, oxidative stress, hormonal changes & immune dysregulation. 
• Anemia, fatigue, sleep disturbancce, anxiety, depression have been correlated with CI.  
• Although the effectiveness has not been proven there has been some use of ADHD drugs and Aricept ( used for Alzheimers) to treat CI in cancer survivors. 
• The use of Erythropoietin -stimulating drugs (Procrit) is not recommended due to cardiovascular issues. 
• Exercise, spending time outside and vitamin E has been helpful for some survivors. 
• While some cognitive training programs and games like Sudoku®, Words with Friends®, word search games, memory games , Luminosity Brain Trainer , etc  have been found to improve cognitive function, other studies did not show an improvement.  ( I think I will keep playing those games on my I-Phone. ) 

Although I am not thrilled that I am 3+ years out of treatment and still experiencing "chemobrain" , I am glad that cognitive impairment in cancer survivors is being recognizing and research to understand the mechanisms and treatment are taking place.


For further information please visit the these sites:

http://www.thecancerjourney.org/side/se-18

http://www.ons.org/Research/PEP/cognitive

http://ons.metapress.com/content/b33028u8651l312n/fulltext.pdf

Dee
Every Day is a Blessing!

CSC Launches "Open to Options" program

Those of you who read my blog regularly know that I have been an active participant as well as a speaker for Cancer Support Community of Central NJ (formerly the Wellness Community of Central NJ). That is why it pleases me to write this post regarding a new program by the Cancer Support Community ( CSC)  and the Amgen Foundation .

Open to Options^TM  was created to improve communication between patient and physicians  and make the patient feel comfortable making treatment decisions. We all know how difficult it is to make treatment decisions when we are still processing the fact that we have been diagnosed with cancer. I knew I relied on the help of the librarian at the resource center at my cancer center to help me find information that applied to my treatments. This program will help patients throughout the country understand their options and find the best way to communicate their decisions and needs to their doctors. Patients work with counselors to generate a list of personalized questions and concerns to take to their oncologist appointments. It is available to those newly diagnosed and those having recurrences. 


Vicki Kennedy, Vice President of Program Development & Delivery at the CSC says  “The goal of Open to Options is to help people affected by all cancers evaluate their options so they can feel more confident and communicate clearly with their doctor so a decision is made that best fits their individual desires and goals.” While Jean Lim Terra, president of the Amgen Foundation said,  “The resources that the Cancer Support Community provides individuals and families helps to ensure that those affected by cancer have the knowledge and support they need to make the right decisions at the right time.”


A CSC study found that a majority of cancer patients feel unprepared to make decisions about their care. A pilot program with the Center for Disease Control found that patients using the program  had less anxiety and more informative appointments with their doctors.


The Open to Options program is available through its Cancer Support Helpline at
1-888-793-9355, through select affiliate locations and by visiting http://www.cancersupportcommunity.org/open2options.  We in NJ are please to have the program available locally at  CSC Central New Jersey (Bedminster, NJ)  (908) 658-5400 .


Thank you to CSC and the Amgen Foundation for developing a program to assist cancer patients with such difficult decisions.  


Dee
Every Day is a Blessing 

Survivor to Survivor: Understanding Cancer Research

I cordially invite you to attend my upcoming talk at the Cancer Support Community of Central New Jersey (3 Crossroads Drive, Bedminster, NJ).

Survivor to Survivor: Understanding Cancer Research

Thursday, March 15 • 6:30–7:30 pm Guest Speaker: Dee Sparacio, CSC Participant, Ovarian Cancer Survivor and Research Advocate Cure for Cancer Found–News at 11! What do the cancer research sound bites on the evening news mean for you? Learn how to read and interpret cancer research results from posters to journal articles. Find out which Web sites are reputable sources of cancer research information.

Please call 908-658-5400 to register.

Dee

Every Day is a Blessing!

March is National Social Worker Month

When people think of health care providers they see during their cancer journey do they think of social workers? I don't have the results of a scientific study ( would be interesting though) but my impression is that they would not. I certainly would rank them high on my list. In my almost seven years as a cancer survivor I have come to know a number of social workers both at the Cancer Institute of New Jersey(CINJ) and at the Cancer Support Community of Central NJ and they have helped me in countless ways.

So what are some things that cancer social workers do?

• Facilitate support groups
• Work with individuals and families from those newly diagnosed to those trying to find a new normal
• Provide helpful information and resources from transportation to financial resources to disease specific information
• Educate patients in how to reduce stress
• Clarify options and assist in various decisions facing cancer survivors during and after treatment

So thank a social worker this month, National Social Worker Month. They share our joy, help calm our nerves, help us figure out what to do next and have a box of tissues ready for those really tough times.

My thanks go out Julie, Barbara and Rose, at CINJ and to Ellen and Karen at the Cancer Support Community of Central NJ.

Dee

Every Day is a Blessing! The blessings of the social workers in my life are countless.

CSC -CNJ Embrace Hope Luncheon

Embrace Hope Luncheon

A Luncheon to Support Cancer Support Community Central NJ

Tuesday, April 24, 2012 at Hamilton Farm Golf Club

Featuring Motivational Speaker

Deborah Morosini, MD
sister/sister-in-law of the late
Dana & Christopher Reeve

Event Cost: $100 per person (includes lunch and valet parking)

For tickets and more information http://www.cancersupportcnj.org/embrace-hope/

Thought my readers in NJ might be interested in this event. The Cancer Support Community of Central NJ offers networking and support groups, educational programs and lifestyle classes to improve the lives of survivors of cancer. Dee Every Day is a blessing

Cancer Support Community Website Relaunch

The Cancer Support Community is relaunching their website and blog in the next few days. Over the past 6 years, I have taken part both as a participant and a workshop provider in many Cancer Support Community Central NJ programs. I was pleased to learn that the CSC blog will include my Women of Teal blog in their blog roll. Thank you CSC.

You can find the new site at

http://www.cancersupportcommunity.org/

and their blog at

http://blog.cancersupportcommunity.org/.

CSC has so much to offer news, downloadable tools, and support groups, both online and at their affiliate facilities. In NJ there are four affiliates.

• CSC Central New Jersey, Bedminster ( formerly known at the Wellness Community)
• CSC Northern Jersey Shore , Eatontown
• Gilda's Club Northern NJ, Hackensack
• Gildas Club South Jersey, Linwood

Click here for addresses, maps etc.

If you are a cancer survivor or caregiver I am sure you will find information about survivorship, support and guidance at the CSC. I know I have.

Dee

Every Day is a Blessing!

Cancer Research for the Layperson

As you may know I have been preparing information for my "Reading Between the Lines: What Cancer Research Means for You" talk for the past few weeks. My goal was to make cancer research results more understandable to the lay person.

I was thrilled when I entered the comfy, living room like setting of the CSC-CNJ to see seven women ready to hear me speak. Because of the informal setting it was easy to have a real conversation with these women. I shared information I had learned about clinical trials and they asked questions about protocols. I relayed questions that medical journalists should ask when writing articles and we turned it in to questions survivors should ask themselves when they hear cancer research news in the media. We talked about the words used in articles about cancer and they added to my list. We discussed experimental versus observational studies. I spoke about the format of peer-reviewed journals. I happened to pick a 2008 phase III study for small cell lung cancer as the example and it included a drug one of the women had been on, so that lead to an interesting one-on-one discussion with her at the end of my talk. I was happy to spend the hour with these survivors.

Thank you to The Cancer Support Community Central NJ (CSC-CNJ) for giving me the opportunity to share what I learned about cancer research as a Research Advocacy Network Focus on Research Scholar.

Dee

Every Day is a Blessing!