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 !