Preparing for ASCO

Tommorrow I head out to Chicago for the ASCO meeting. I am looking forward to meeting other ovarian cancer advocates and interacting with researchers and drug manufacturers regarding the latest breakthroughs in cancer research.

This year I will be bringing my Nook tablet so I hope to tweet and post here from the meeting. I'm still getting used to this device so the initial posts may be shorter than normal but I will be sure to fill in the blanks on my return.

<>Thank you to the Conquer Cancer Foundation for the opportunity to attend again this year.

DEE Every day is a blessing!

An Aid for Dealing with a Cancer Diagnosis

Recently I have thought more about the psycho-social effects of an ovarian cancer diagnosis especially dealing with recurrences and the fear of a recurrence. Many of my survivor friends, after years of no evidence of disease, are now in treatment for recurrences.

After reading some online reviews about books that offer psychosocial support for cancer patients I decided to order The Human Side of Cancer- Living with Hope, Coping with Uncertainty by Jimmie Holland  MD and Sheldon Lewis. I started reading it as soon as it arrived and finished a few days ago.

The book was published in 2001 but that does not mean that the advice offered is no longer relevant. As a matter of fact the numerous patient stories about their feelings of anger, sadness, uncertainty and hope and the advice given by Dr Holland are timeless.

I found the most interesting chapters to be:
Coping- which includes a great list of Do's and Don'ts about coping
The Human Side of Cancer Treatments- the psychological side effects of surgery and treatment
All Medicine doesn't Come in a Bottle- mind-body techniques and counseling
The Goal is Control- living with a chronic illness

The book is very useful for survivors but also includes advice for caregivers and will allow a caregiver to understand some of the cancer survivor's reactions to different aspects of their cancer journey. So I recommend that you borrow it from the library. Or if you are like me,  and doggy-ear pages or underline helpful parts,  buy yourself a paperback copy of the book.

This book offers hope for all stages of a cancer diagnosis.


Dee
Every Day is a Blessing!

Cancer and Obesity

Yesterday, I attended the 2012 Annual Retreat on Cancer Research in NJ at the University of Medicine and Dentistry of NJ Medical School in Piscataway. The conference was presented  by the Cancer Institute of NJ (CINJ) and the NJ Commission on Cancer Research. This year's sessions for medical professionals focused on areas such as Cell Death, Genomic Instability,Tumor Progression, Cancer Pharmacology, Preclinical Therapeutics and Clinical Investigations.

I attended the Public Forum again this year.( Last year's event was on Survivorship.)  The forum was titled Kids and Cancer:  the Obesity Connection but it offered information about adult obesity too.

After welcoming the standing room only crowd Peter Gillies, Ph.D, NJ Institute for Food, Nutrition and Health shared these facts.

• 1 in 3 children are obese
• 2 in 3 adults are obese
• We spend 190 Billion dollars a year because of obesity
• NJ is one of the worst states in the US in terms of obesity

John Milner, Ph.D, Chief Nutritional Science Research Group at the NCI, was the keynote speaker. What an informative lecture ! He spoke about the myths of cancer and obesity with facts and studies. Here are a just few myths he mentioned:

• Risk of obesity has plateaued Not true- obesity in the US will continue to increase unless we do something now.
• All people are equally susceptible to obesity . Not true. African Americans are more prone to obesity than Hispanics who are more prone to obesity than Caucasians.
• We all respond identically to food items. Not true. In studies some people who used olive oil gained weight , some people lost weight.
• Food availability and not genetics makes me eat Not true. Sure having lots of sweets available in our environment may make us eat more of them but how our individual bodies break them down , use and stores them may be genetic.

There are many things that influence obesity. The amount of food we eat, the types of food we eat , the amount we exercise, our genetic make-up including hormone level are important so controlling our weight ( loss or gain ) should be approached in a more personalized manner. One diet does not fit all.

Dr Milner's talk was followed by these related topics.

• Elisa Bandera, M.D., Ph.D an epidemiologist from CINJ spoke about Childhood Obesity and Timing of Puberty :Implications for Future Health and her current study Jersey Girls. Jersey Girls hopes to answer the question whether or not girls with earlier puberty become obese? 
• Chung Yang, Ph.D ( Rutgers University) clarified  Does Vitamin E Prevent or Promote Cancer in his studies of Vitamin E (Tocopherols). He  found that Alpha molecules like those found in vitamin E tablets were good nutritionally but failed to prevent  cancer while the gamma and delta molecules showed preventative properties.  
• Tracy Anthony, Ph.D (Rutgers) introduced Dietary Macro nutrients and Their Influence on Appetite and Weight Control with how the USDA guidelines for good nutrition have changed from the food pyramid to MyPlate. She spoke about amino acids, which make up proteins like leucine,  and their role in good nutrition and the need to spread out our protein intake throughout the days meals not just at dinner. 

After the talks were complete, I spent time looking at posters on CD-44 and Vitamin D,  chronic care and health beliefs in older breast cancer survivors, and sun protection and exposure behaviors among Hispanics.

On my drive home I reflected on all the information I had heard from NJ's very own researchers. What a benefit it is to live in a state in which there is such a wonderful collaboration between CINJ cancer center researchers and academic researchers especially those at Rutgers University ( my alma mater).

Dee
Every Day is a Blessing!

Third Painting in my Life Quilt Series- Strength

Just the other day I finished painting my third Life Quilt painting. I started painting after my initial diagnosis in 2005.

The colors in this painting which I titled Strength are purple the awareness color for pancreatic cancer and grey the awareness color for brain cancer . I chose to use those colors in memory of my cousin Charlie S who had brain cancer and family friend Roy D who had pancreatic cancer. Both men showed such strength when facing their cancers.

The quilt design is called friendship star. 

You can view my other quilt paintings here and here.

I'm going to take a break and paint a landscape but will be back painting quilts very soon. 

Dee

Every Day is a Blessing!

PS For those who noticed a little blog layout change what do you think? 

Precision Medicine at CINJ

Recently there has been a stress on personalized medicine in the treatment of cancer. We know that cancer although the same type, such as epithelial ovarian cancer ( the most common ovarian cancer), may vary from patient to patient due to the cancer's unique molecular makeup.  Standard treatment that may work for one woman may not work for another and the cancer will progress. What is needed is an understanding of the molecular and genetic makeup of each individual's cancer to best treat the disease.

The Cancer Institute of New Jersey has begun an initiative called Precision Medicine. This initiative which includes the use of bioinformatics will allow researchers to collect both clinical and genetic information to determine diagnosis, prognosis and best course of treatment in a more targeted manner than in the past. This is good news for cancer patients.

What makes me especially happy is that this initiative will be lead by Lorna Rodriguez, MD, PhD  chief of gynecologic oncology at CINJ since 2000, one of my gyn-oncs and lead investigator of the selenium clinical trial I participated in. It is because of her many investigator-initiated trials into cancer metastasis and drug resistance that makes her the perfect person to lead this research.

To read further about this program please click here.

Dee
Every Day is a Blessing! I am especially blessed to be treated at a center that is at the forefront of cancer research.

Grand Rounds and the Well-being of Ovarian Cancer Survivors

A few weeks ago I came across the community calendar for St Peter's University Hospital. In the Save the Date section was a listing for the Rosenzweig Lecture "Coping and Hope in Ovarian Cancer". The talk was to be given by Lois Ramondetta, MD. I thought the name sounded familiar so I went to my bookshelf and sure enough she wrote the book The Light Within ~The Extraordinary Friendship of a Doctor and Patient Brought Together by Cancer. I bought and read  the book in 2009 on a recommendation from another blogger. The book is about the relationship between Lois and her ovarian cancer patient Deborah Rose Sills , a professor of religion.

I thought I might want to attend the Lecture and also have Dr Ramondetta sign my copy of her book. When I called St Peter's to ask if it was ok for a survivor to attend I was told they would love to have survivors in the audience. I shared the info with my support group and my friend Sandy said she'd come with me.

When we arrived this morning to the Sr Marie de Pazzi Conference Center we learned that this Lecture was part of the Grand Rounds for the Department of Obstetrics and Gynecology Continuing Medical Education . Grand Rounds is "designated to update obstetricians, gynecologists and sub-specialists on clinical issues and current trends in medicine".  I thought we might feel out of place since Sandy and I were the only ones in the room not in white coats but Abby from the Department made us feel very welcome.

Dr Carlson began the Rounds by thanking the family of Toby Rosenzweig for their support of the lecture series and then he introduced Dr Ramondetta  who is from The University of Texas M D Anderson Cancer Center. Dr Ramondetta presented "Meaning and Peace : Physicians and Patients Coping with Cancer".  She spoke about the importance of the spiritual well-being of patients especially those with ovarian cancer. In order for doctors to take care of the spiritual well-being of their patients Dr Ramondetta  said we needed a definition of spirituality. She uses the  2009 Consensus Statement Definition of Spirituality ( found below) in her work.

Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.

A survey showed most doctors are not questioning their patients about their spirituality or well-being. Dr Ramondetta mentioned a number of different methods to determine patient needs. She stressed to the med students that they might not need a formal surveying instrument and that they should listen to their patients since what a patient says may open the door to a discussion.  She referenced a study in which cancer patients reported it was very important to have their psychosocial needs met .

Dr Ramondetta has been studying the well-being of patients with ovarian cancer at three locations- MD Anderson Cancer Center , an academic medical center and a community hospital. Her results will be presented at an ASCO poster session. I will be sure to view her poster when I am in Chicago.

Since stress can impact a patient's well-being and immune system  Dr Ramondetta also discussed the work of Dr Sood (MD Anderson) on stress and ovarian cancer.  There is currently an open clinical trial in which newly diagnosed ovarian cancer patients are receiving beta blockers along with chemotherapy.

When the lecture was over Sandy and I went over to talk to Dr Ramondetta. I introduced myself as an ovarian cancer survivor and she was kind enough to sign my book.  I thanked her for the advice she gave to the med students about seeing the whole patient not just the disease.

I only chatted with Dr Ramondetta for a short time but I could see why Deborah developed such a close friendship with her.

It makes me feel good to have a gyn-onc who treats all of me not just my disease and one I call friend. Thank you Doctor Gibbon.


Dee
Every Day is a Blessing!

Public Forum NJ Cancer Retreat May 24th

UPDATED: Realized the links and photos were not working correctly.Please go directly to the site for more information.

The Annual Retreat on Cancer Research in NJ is where cancer researchers in NJ share their research results and discuss. Last year I attended the Public Forum which was on Survivorship and also spent time reading  posters.This year's public forum is on obesity and from the schedule is will be an informative session.  I'll be attending again this year and hope you will too! Check out the website
http://www.njcancerretreat.org/
for more information.

Dee
Every Day is a Blessing!

Celebrate Survivorship at Relay for Life

The ACS will be honoring all cancer survivors at its Relay for Life Events. Check out the various locations in NJ and be sure to RSVP if you plan on attending the reception.

Thanks ACS

Dee

Every Day is a Blessing!

Calling all Health Bloggers- Media in Medicine Course

 

The Medicine in the Media course offered by the NIH's Office of Disease Prevention teaches evidence-based health reporting. 

This year’s course, to be held October 14–17, 2012, at the Bolger Center in Potomac, Maryland, is open to bloggers, reporters, and editors who provide the general public with news stories about health and healthcare via print, broadcast, or online media. While participants should be eager to enhance their skills in medical science reporting, they need not have extensive experience or a background in medical journalism. The course  teaches attendees to:

•                    Interpret and evaluate research findings, including statistics.

•                    Select stories that hold meaningful messages for the public.

•                    Place stories in their appropriate context.

Please note: The deadline to apply is June 1, 2012, at 5 p.m. ET.

For more information, including FAQs and alumni testimonials, visit the Medicine in the Media website:http://prevention.nih.gov/medmediacourse/

This course is FREE and accommodations are provided too! So fellow health bloggers if you can get yourself to DC this will be the place to be in October.

I regret I will be unable to attend since  I know I would enjoy the sessions on evaluating research findings.   Hopefully I'll be able to attend next year. 

Dee

Every Day is a Blessing!

Blue Claws Game to Support LiveSTRONG

Have fun at the July 29, 2012 Lakewood Blue Claw's  baseball game and help Jersey Shore Area for LiveSTRONG support LiveSTRONG which provides navigation services to cancer survivors and caregivers.

Find more information on the flyer below or at http://jerseyshorearea4livestrong.wordpress.com/2012/04/21/lakewood-blueclaws-livestrong-themeawareness-night-flyer/.

Be sure to wear yellow!Over 300 tickets have been sold so call soon if you want to show your support. 

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 

Teal Tea 2012

Once again this year I was a table captain for the Teal Tea Foundation's annual Teal Tea. This year's theme was Turn the World Teal : Every Month of the Year. I chose Teal March Madness to best present the theme. It was fun gathering and creating the centerpiece.

Teal Stars on each chair

 Basketball net,Wood floor,Sneakers,Teal Star T-shirt ,teal basketballs and brackets 

Dr. Michael Seiden President/CEO Fox Chase Cancer Center- Keynote

It was a wonderful and fun way to support ovarian cancer research.

Dee
Every Day is a Blessing!

Belleville ,NJ Event to Benefit OCRF

Event:	A Tribute to Lydia Estrada & to All Mothers: Belleville, NJ
When:	05/12

Description

A Tribute to Lydia Estrada & to All Mothers

When:

Saturday, May 12, 2012

6:30 p.m. - 11:00 p.m.

Where:

St. Peter's School Auditorium

152 William Street

Belleville, NJ 07109

Please join FLP Care and Mentoring Center for a fundraising event to support ocrf and the missionaries of the Franciscans of Our Lady of the Poor. The event will be open to the public.

Ovarian Cancer Research Fund will be a beneficiary of this fundraiser, held in tribute to Lydia Estrada.

For more information, please send an email to:

flpcmc@gmail.com

Cancer Clinical Trials - A New Resource

On April 26th, I  posted information about a  Cancer.net podcast on Clinical Trials.

In response to that post Tomasz Beer, MD (a medical oncologist from Oregon's Health and Science University ) left a comment asking me to take a look at his  book  Cancer Clinical Trials A Comprehensive Guide to Experimental Cancer Therapies and Clinical Trials.

and related blog http://www.cancer-clinical-trials.com/  to see if I thought it was helpful.

So I spent some time recently reading an excerpt from chapter 2 titled "What are Clinical Trials" and some blog posts . The  book excerpt was excellent and included much of the same information I have provided in my talks on Understanding Cancer Research at the Cancer Support Community. Other topics in the book include how trials are designed, standard versus experimental therapy, types of clinical trials, costs, insurance, oversight of studies, and a section on how to decide if a clinical trial is right for you. There is a even a section in which Dr Beer discusses misconceptions about clinical trials. I'm interested enough in this book that I will purchase a copy.

The blog is a great companion site. The posts are informative and written in a way that the average cancer patient will find easy to understand.  I recommend a read of "Practical Tips on Choosing a Clinical Trial" . There are links on the Home page to Resources,Video, Audio, and my favorite "Clinical Trials in Cartoons" featuring cartoons created by Larry Axmaker . Those cartoons will make you laugh.

This book will become an  invaluable tool for any cancer survivor and their caregivers who want to know more about clinical trials or who might be considering clinical trials. I hope you will take the time to read Dr Beer's blog and you will find a link to his blog on my resource page.

Dee
Every Day is a Blessing!

It Never Is Easy

It is never easy to lose a friend.

Ann came into my life when she joined the Gynecologic Cancer Support Group at the Cancer Institute of NJ. She joined our group when she was diagnosed with endometrial cancer. The treatments for endometrial cancer involve surgery, chemotherapy and radiation and are a bit different than for ovarian cancer but we were happy to have her join us.

I learned a lot from Ann. I learned about Brachy therapy. I learned about the strength we can muster when faced with cancer as well as other medical issues. Ann asked tough questions of her doctors and expected answers that covered all aspects of her care. She coordinated the care provided by her gynecologic-oncologist , her surgeon, her kidney specialist,  her radiation oncologists and did it with courage and  humor.

We both attended the June 2009 CINJ Survivors Day event with our husbands and celebrated our survivorship. Over time we started to call, write e-mails or text in between our monthly support group meetings. We talked about treatments and  scan results, but we also shared stories about our children and our houses and our cars. I visited her when she was in the hospital with a broken leg. She offered words of advice and support via e-mail when I was in Kansas when my grandson was first born and spent time in the NICU unit.

I texted her on the 21st- "Thinking of u wearing the necklace u made me to a fundraiser in New Brunswick. Hugs" . Yesterday Ann lost her battle with cancer. You can read more about Ann here.

I was blessed to have Ann be a part of my life. My thoughts and prayers are with her husband, Don, and children.

Dee
Every Day is a Blessing!