Who would have thought

Those who read this blog know that I always sign off with: Every Day is a Blessing!

Yesterday was my birthday. Most adults reach a certain age and try to forget they are having birthdays. Folks don't want to think about how old they are getting. Not me. Nick came up to me in the morning and whispered " I am so happy you are here to celebrate this birthday". I was thrilled to be here to celebrate too. Honestly, a month after my birthday in 2005, I was nervous about making it through chemo no less making my next birthday in 2006. But here I am in 2011 having just celebrated another birthday.

I loved that when I logged in to my Facebook page I had received so many birthday greetings and it wasn't even noon time. Lots of those early greetings were from some wonderful teal women I know in the UK. Even though they live across the Atlantic I feel like they could be friends from my local support group. Then there were the greetings from family and friends that live near and far. Of course there were also the phone calls and cards in the mail. It all made me feel so happy.

In the late afternoon Nick , Matt and I drove down the shore, well more like east to the shore, to Bradley Beach for Vic's thin crust pizza. MMMM Good. After eating we drove a few blocks to the beach in Avon , parked and walked on the boardwalk. I had the sudden urge to stick my feet in the ocean. So off came the shoes and down the stairs I went and into the cool water I walked. Things were good until I decided to rinse off a large clam shell I found. OOPS ! the water came up and wet the bottom 3 inches of my shorts. It caught me off guard but I didn't drop the shell and I laughed all the way back to the boardwalk.

What an awesome birthday. I hope I can celebrate many more in just the same fun way.

Dee

Every Day is a Blessing!

Chemo Drug Shortages

Over the past few weeks I've been reading a number of articles on chemotherapy drug shortages. Here is just one video and article on the topic.

On June 16, 2011 Paclitaxel the generic brand of Taxol was put on the American Society of Health System Pharmacists current shortage list(ASHP). These drugs are manufactured in various milligram dosages from 6mg too 300 mg. The reasons given in the bulletin were:

Manufacturing shortage - Teva

Increased demand - APP

No reason - Bedford

There is no direct substitution for paclitaxel.

On June 23,2011 ASHP added carboplatin solution for injection to the list.

The reason for the shortage was given as:

Manufacturing shortage- Sandoz, Teva, Hospira

Discontinued manufacturing in May 2011- Bedford

These two chemotherapy drugs are the standard of care for women initially diagnosed with ovarian cancer and for many who recur. Paclitaxel is also used by women diagnosed with breast cancer and off label for other cancers.

From the ASCO in ACTION website I learned:

June 23, 2011

Drug Shortages Legislation Introduced in the House
This week, Representatives Tom Rooney (R-FL) and Diana DeGette (D-CO) introduced H.R. 2245, legislation that would amend the Federal Food, Drug, and Cosmetic Act to provide the Food and Drug Administration (FDA) with improved capacity to prevent drug shortages. As an important first step in addressing the complex issue of drug shortages, this bill is consistent with recommendations from the November 2010 Drug Shortages Summit co-convened by ASCO. The proposed legislation includes provisions that would expand FDA authority to require manufacturer notification of shortages and market withdrawals, and enhance communication among health care providers and stakeholders in the pharmaceutical supply chain about the nature and expected duration of shortages. ASCO and the Summit co-conveners provided input on this legislation and have sent letters to the sponsors thanking them for taking action on this issue and in support of the legislation.

I am happy that some action is being taken by Congress to address this issue that effects cancer patients throughout the country.

Carboplatin and Paclitaxel are just two drugs on this list. There are other chemotherapy drugs listed as well. Will lives be lost due to this drug shortage? How much worse will the impact be on patients treated at small chemo clinics?How many patients will have their treatment delayed or switched? What about Taxol? Why is there not a shortage of the name brand?

Let us hope that manufacturing rates increase in the near future.

Dee

Every Day is a Blessing!

Share Your Survivor Story

I just realized that I haven't posted in a while. It has been a busy past few days.

I have developed so many wonderful friendships during this cancer journey. Some of these new friends are survivors, some are nurses and some are even researchers. I've interacted with women from all walks of life and from all over the world. I feel strongly that people diagnosed with cancer who have found support from another survivor should return that act of kindness. I have done that for the past few years in a number of ways but mostly through my work as a volunteer for Cancer Hope Network.

On Friday morning I received a phone call from Trish at Cancer Hope Network. She told me she had a match and there was a woman whose ovarian cancer (OC) had recurred. She really wanted to talk to someone who had a remission after a recurrence. I said sure. I had some time that morning to chat with her. She gave me the woman's information.

I waited about 10 minutes and I called the OC survivor. We talked for about 30 minutes. She told me what treatment she had taken and what her CA-125 and scans showed now. I was able to share my story. How I recurred and went into complete remission ( for over 2 years now). She was so happy to hear my story . Then she told me what her proposed course of treatment was going to be. I recalled a study I learned of when I attended the ASCO meeting that used the same drugs. ( Thank you to the Research Advocacy Network for allowing my attendance at the meeting.) Again she was so appreciative of the information I provided. I'll be checking back with her in a few days.

So if you are a survivor or a caregiver who would like to share your story to provide hope to newly diagnosed or recurrent cancer patients please think about volunteering with the Cancer Hope Network. They are located right here in NJ but serve cancer patients throughout the country.

If you are a cancer patient check out their social network. You might just hear from me if you join the Gynecologic Sisters and Supporters Group.

Dee

Every Day is a Blessing! My life is blessed by these women of teal.

Joy

For the past few weeks I've been concentrating on reporting on cancer research news and shying away from more personal news. This past weekend I took a break from my advocacy work to join family in Kentucky for the baptism of my niece's son D.

The baptism took place during the Saturday afternoon mass at St Mark's Church in Richmond. The priest spoke about the joy of the Trinity and all I could think about was the joy of family. The Church family and my family. D became a member of the Church and his family was celebrating this occasion. Family drove and flew in from NJ, my daughter flew in from Kansas, friends came from the neighborhood and from as far away as Michigan.

But in a way, past members of the family were there too. Draped over his christening outfit was the family christening gown. D was a bit to big to actually wear the gown. The gown was made by my grandmother Carmella in the late 1890's for my Aunt Marion's baptism. If I understand correctly my cousin Marion and her children as well as her siblings wore it. My niece and my daughter Theresa also wore the gown. And here was D in 2011 wearing the same gown. What Joy!

Everyone smiled as the priest poured the Holy Water and then the Chrism on D's head. I knew at that time that Aunt Dora, my mother and father and Roberta where looking down on all of us an smiling too.

Dee

Every Day is a Blessing! I am blessed to have been able to share the Joy of D's baptism.

Summer Sun

Click on the image above for more info about the location , time and date of Somerset County's Free Skin Cancer Screenings . The day is part of the program "Choose Your Cover" in NJ.

With Summer right around the corner remember to wear sunscreen and sun glasses. Personally I use sunscreen on my face all year round . In the Summer I love my big floppy hats!

Dee

Every Day is a Blessing!

Turn The Towns Teal® National Campaign

June 13, 2011 Contact: Liz Thomas

856-642-6226 x13

Turn The Towns Teal® Launches National Campaign to Raise Awareness of Ovarian Cancer

BROOKSIDE, NJ –Towns nationwide are turning teal to fight ovarian cancer, the leading cause of death from gynecologic cancers in the U.S. There is no early detection test and the symptoms are subtle and often misdiagnosed. Turn The Towns Teal® is a national campaign to promote awareness of the symptoms of ovarian cancer during September, National Ovarian Cancer Awareness Month.

Founded in 2007 by Gail MacNeil of Chatham, NJ, Turn the Towns Teal consists ofvolunteers tying ribbons in town centers across the country, accompanied by the distribution of symptom cards and literature about ovarian cancer. In its first year, 2007, 40 New Jersey communities “turned teal.” In 2010, over 300 communities in 29 states participated including states as far west as California and Hawaii , as far south as Florida and as far north as Vermont.

Gail was always fastidious about her health. After raising questions about her symptoms on three occasions with her gynecologist, Gail walked away with the same answer, that her symptoms were simply the onset of middle age. In December 1997, she was diagnosed with Stage IIIC ovarian cancer.

In 2008, Gail lost her decade-long fight with ovarian cancer, but she had already begun making a difference in increasing awareness of this deadly disease. Today, Turn The Towns Teal goes forward, saving lives in her name and in her honor.

This September, volunteers from across the country will once again bring attention to this need to educate people about the symptoms of ovarian cancer by “turning their towns teal.” Interested participants may visit www.turnthetownsteal.org to order ribbons and campaign materials.

“Had Gail known the symptoms of ovarian cancer, she would have immediately sought the advice of a gynecological oncologist,” said Jane MacNeil, President of Turn The Towns Teal. “What happened to Gail is not uncommon. Most women are not diagnosed until it’s too late. That’s why recognizing the symptoms of ovarian cancer is a critical element in fighting the disease. When detected early, the survival rate is 90 to 95 percent,” MacNeil added.

Visit www.turnthetownsteal.org to sign up. Find us on Facebook atwww.facebook.com/TurnTheTownsTeal or follow us on Twitter @TurnTownsTeal.

Dee

Every Day is a Blessing!

Breast Cancer Study

Are you a Breast Cancer Survivor? Do you have opinions about services provided Breast Cancer patients? Please consider being interviewed for this study being run by a Rutgers University Graduate student.Click on the image to enlarge.

Dee

Every Day 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!

ASCO - the End Part II

All the Focus on Research© Scholars where asked to video a testimonial about their experience as an advocate at ASCO. Below is my testimonial.

I am an ovarian cancer survivor and advocate. Being part of the Focus on Research© program this year has been an honor.

The preparation offered prior to attending the conference was invaluable. Learning about biomarkers, drug development and clinical trial design has increased my understanding of cancer research. Interacting with the webinar lecturers, Drs Byers, Hong and Bemis helped to improve my communication skills and raised my confidence to discuss research topics with poster presenters and education session lecturers. Knowing the language and acronyms of cancer pathways, drugs and agents was an asset during the conference.

At ASCO the interaction with other advocates and hearing about their experiences has been both enjoyable and inspirational. I look forward to maintaining these relationships for years to come.

Another benefit of my attendance has ben an increased respect for cancer researchers and the challenges they face in both the US and internationally. I was thrilled to interact with a large number of international researchers at poster sessions and in the lecture hall. Learning about advances such as PARP inhibitors, monoclonal antibodies and other individualized medicine agents gives me hope for the future of cancer research.

I look forward to working with my dissemination partner. My goal is to share the exciting research developments I learned about this weekend in terms that are understandable by patients and caregivers.

Thank you to the Research Advocacy Network's Advocate Institute© for the incredible opportunity.

Dee

Every Day is a Blessing!

ASCO - the End Part I

It has been a very hectic, tiring past few days but I am so happy I have been able to attend so many interesting sessions here at ASCO.

After having breakfast with fellow advocates Sharon and Susan I checked out of the hotel and headed back down to McCormick Place. First stop ? Another poster session, this time on cancer prevention and epidemiology.

I had a wonderful conversation with a researcher from Memorial Sloan Kettering who presented data from a study( poster 1509) looking at testing women with high grade serous epithelial ovarian cancer for BRCA mutations. Of 79 patients with no family history of breast or ovarian cancer 19% had a detectable BRCA1 or 2 mutation. The study concluded that the number of mutations identified supports current recommendations that it is reasonable to consider genetic testing for any woman with high grade serious epithelial ovarian cancer.

Then I strolled to a session called Assessing Patients Psychosocial Needs : How to Do this In Your Busy Schedule. After a review of the risks of emotional issues for survivors, the use of the Depression Thermometer as a tool to determine psychosocial problems was discussed. Many oncology practices do not ask questions about how a survivor “feels “ emotionally. So the speaker recommended that patients be asked how they feel along with assessing their pain, temperature, & blood pressure when they come in for a visit. Use of the DT was suggested as a way to gather that information.

When that session finished I went into the exhibit hall where there were over 220 exhibitors.I decided to do a bit of personal research so that I could better understand how vascular endothelial growth factor (VEGF) inhibitors, Sorafenib ( Nexavar) by Bayer and Bevacizumab ( Avastin) by Genentech, work. Avastin is a monoclonal antibody that binds to the VEGF released by the cancer cells . Today I learned that Sorafenib is a small molecule inhibitor which blocks kinase proteins from signaling the cell to create the molecules it needs create the blood vessels. .

Before I knew it the day was over! Time to say goodbye to some very remarkable people, my new friends, the scholars of the Focus on Research Program.

Part II tomorrow.

Dee

Every Day is a Blessing! What a blessing it has been to be a participant in this program.

An ASCO Type of Sunday

I was off this beautiful Sunday morning to McCormick Place for yet more Gynecologic Posters, an Education Session on the Association of Body Weight in Cancer Populations , Lunch with Dr Rodriguez , a conversation with a Genentech Representative about Avastin and an Ethics of Early Phase Clinical Trials lecture. The day ended with a trip to the Chicago Museum of Science and Industry for the ASCO President's Reception.

The posters were on a variety of gynecological cancer topics.Here is sample of two :

Peglated liposomal doxorubicin (C-PLD)and carboplatin versus carboplatin (C-P) in platinum sensitive OC patients: treatment at recurrence and overall survival final analysis from CALYPSO Phase III GCIG trial ( #5052)- This is part of a large international study . There were roughly 500 women in each arm of the study. Conclusion : There is a better benefit to risk ratio( Progression free survival vs toxicity) of the C-PLD arm compared to the C-P arm in OC patients with platinum sensitive relapse.

Catumaximab treatment of malignant ascites in patients with chemotherapy-refractory ovarian cancer ( # 5048)-Ascites is fluid that builds up in the peritoneal cavity when tumor cells spread. Patients with malignant ascites have poor prognosis. Catumaximab is a monoclonal antibody. In this study of 40 patients the conclusion was an improvement of malignant ascites symptoms and an overall survival of 3.6 months.

During the session on Weight in Cancer Populations, Dr Ligibel reported studies with early stage breast cancer patients obesity at diagnosis suggests a link to poor prognosis.

Last day of ASCO is tomorrow.

This has been a worthwhile, enlightening and enjoyable experience. Learning about the research taking place on so many different fronts - PARP inhibitors, monoclonal antibodies and gene mapping gives me hope.

Dee

Every Day is a Blessing.

An exciting Day 2 at ASCO

It was a full day of lectures on Topics on Ovarian Cancer, Posters on Health services and Developmental Therapeutics, Novel approaches to Improve Treatment Outcomes in Ovarian Cancer and Ovarian Cancer Oral abstracts.

Big News! Two studies ICON7 and OCEANS for newly diagnosed women and recurrent women respectively and Bevacizumab ( Avastin) were presented.

In a nutshell :

ICON7 ( Carbo/placitaxel + bevacizumab) is showing continued improved progression free survival and improved overall survival. The study ends in 2013.

OCEANS ( Carbo /gemcitabene + bevacizumab ) Showed clinically meaningful benefit in recurrent ovarian cancer.

There was also a report on the effect of screening on ovarian cancer mortality based on the Prostate, Lung,Colorectal, Ovarian (PLOC)cancer randomized screening trial. Conclusion: Screening ( CA-125 + Transvaginal Ultrasound) does not reduce ovarian cancer mortality.

Dee

Every Day is a Blessing!

ASCO Day 1

This will be a short post because it is late and I have an 8am session tomorrow morning.

Education Session: Survivorship Care: Whose Job is It?

Dr Paul Han (NCI) presented the initial results of the Survey of Physician Attitudes Regarding the Care of Patients. The study is not yet published. The survey asked oncologists and primary care physicians about their attitudes regarding knowledge, and practices with regard to breast and colorectal cancer follow-up care. Over 1000 oncologists and 1000 PCP's answered the survey. Not a surprise that oncologists prefer an oncologists centered plan. While 40% of the PCP's preferred a shared care plan. ( http://healthservices.cancer.gov/surveys/sparccs/)

Gynecological Poster Session and Discussion

25 posters. Where do I begin? Here are just two that might be of interest to my readers.

The Role of Bevacizumab in combination with peglated liposomal doxorubicin in patients with platinum-resistant recurrent or refractory ovarian cancers. Phase II study.

Conclusions: Bevacizumab seemed to enhance effect of Doxorubicin in platinum-resistant recurrent or refractory ovarian cancer patients. Weekly B-D warrants further clinical study in such clinical settings.

Median progression free survival was 8 months. This is an interesting combo.

A multivariate longitudinal algorithm for early detection of ovarian cancer using

multiple biomarkers.

This study developed an algorithm to assess the risk of Ovarian Cancer using CA-125 versus a composite index from multiple biomarkers(CA125, CA15.3, CA72.4, CA19.9, and HE4 )at 98% specificity.

Conclusions: Multiple biomarkers can be combined in a longitudinal algorithm to improve detection of early stage ovarian cancer. Additional sample sets that include independent samples of longitudinally detected cancer cases will be needed to further validate the algorithm.

More exciting research results to come.

Dee

Every Day is a Blessing! I am blessed with the opportunity to talk to so many OC researchers about their work.

Gearing up for ASCO

For the past 2 months I have been preparing for the American Society of Clinical Oncologist (ASCO) Annual Meeting in Chicago. I am attending as part of the Research Advocates Network(RAN) Focus on Research program . I appreciate the opportunity RAN is providing me to hear the latest research results. My goal and the goal of the Focus on Research Program is to disseminate the information learned about cancer research. For myself I am concentrating on ovarian cancer research lectures and poster sessions. I want to thank Dena O’Malley and the Center for Cancer Survivorship at the Cancer Institute of New Jersey for being my dissemination partner.

I have been attending webinars on Biomarkers, Drug Development and Cancer Pathways and reading manuals on genomics. At times I felt like I was back at Rutgers in the Intro to Biochemistry class. I needed to relearn how cells replicate, the structure of DNA and RNA, and clinical trial design. I admit It has been a bit of a challenge . Chemobrain seems to have affected how I learn and recall information. It requires me to listen, take notes, reread and review the slides from the lecture and still at times it takes me a long time to recall the proper names. Throw some unique acronyms on top of it and at times I feel I am talking alphabet soup. But I think the extra effort will pay off in the days ahead.

I have found recently that the media, internet , TV and print , tends to run with stories of agents that can cure cancer or raise or reduce risk without putting the results in perspective. This may raise hopes for patients when in fact the drug/agent is many years away from being used on humans. Rather we should ask: Was the research on animals or humans? Has the drug/agent finished clinical trials?How large was the study? How expensive is the agent/drug/screening test. How long until the agent is available?Many times groups push for a screening test for the general population that really does not fit the criteria of being specific and sensitive. My plan is to post an update every day from the Conference but in the weeks ahead I will follow up with more detailed information which hopefully will answer the questions I posed above .

The other bonus of this trip is meeting other research advocates from around the world.

Can’t wait for the sessions to begin tomorrow!

Dee

Every Day is a Blessing.