Monday, December 15, 2014

Ovarian Cancer Facts for NJ

Today I made a presentation about ovarian cancer to the members of the Hunterdon Mercer Chronic Disease Coalition. I thought I would share some facts with my readers.

In 2011 there were 699 cases of Ovarian Cancer diagnosed in NJ.
  •  Hunterdon County  7 
  •  Mercer County 28
In 2011 in NJ there were 483 deaths due to Ovarian Cancer
  • Hunterdon County 6 
  • Mercer County 21
I found the information on the NJ Cancer Registry site at www.cancer-rates.info/nj/index.php   
Information about how to use the site can be found here. It is a three frame window and takes some time to load. 
A link to a report of Cancer Incidence & Mortality in New Jersey, 2007-2011 can be found at 
http://www.state.nj.us/health/ces/documents/report07-11.pdf

I appreciate the opportunity to present the information for all the Coalition members. 




Dee
Every Day is a Blessing!
 

Sunday, December 7, 2014

Losses and Friendship

friend

noun \ˈfrend\
: a person who you like and enjoy being with
: a person who helps or supports someone or something (such as a cause or charity)
 
 
That is the definition I found in the online Merriam-Webster.com dictionary. 

Since the day before Thanksgiving four women I know have died due to ovarian cancer. Only one of them have I actually met in person and that was only for about an hour. But I reacted to their deaths as if they were friends from work or church or my neighborhood.

I have heard people remark that you can not be close to people you only know online and you can't be friends. I will admit I get a bit annoyed when people say that. Three of the women were members of two different groups for ovarian cancer survivors on Facebook and one I met on Twitter first and then friended her on Facebook and eventually met her in person. One woman lived in Engand. Another was the mother of Cynthia ( also an ovarian cancer survivor). But for me my online friends fit the second friend definition of "helping and supporting someone." These women were no different than women I have met in person at various ovarian cancer awareness or education events. or at conferences or courses. Afterward we stay in touch through e-mail, support groups or phone calls.

We meet because of our disease but bonded as we supported each other and shared information about treatments, side effects or  how to emotionally handle the stress of scan time. And as with other friendships along the way you learn other things about the person such as the shows they like to watch on TV, books they like to read, where they were born, what work they do, where they went to college and what their hobbies are. So it really is the same process of building a friendship as if you had met in person.

I value each and every one of the women I have met in person as well as those I only know on social media. Our numbers are not as large as those diagnosed with other cancers but we are strong and want to make connects in person and online and their is value to both.

RIP - Benita, Cheryl, Elaine, Barbara I was honored to have known you.


Dee
Every Day is a Blessing!



Well

Saturday, November 22, 2014

OC News : Bevacizumab, Rucaparib, Trebananib

During the past few weeks there have been a number of developments in Ovarian Cancer  treatment and research in the news. Below are my top three picks.

Bevacizumab (Avastin) for Recurrent Ovarian Cancer

The FDA approved Avastin, a VEGF inhibitor made by Genentech, for treatment of persistent, recurrent or late stage Ovarian Cancer. Avastin can be used with paclitaxel, pegylated liposomal doxorubicin or topotecan chemotherapy.
FDA announce may be found here
Genentech Press Release and results of the Phase III AURELIA study can be found here.

6th EORTC-NCI-AACR  Symposium on Molecular Targets and Cancer Therapeutics in Barcelona, Spain News

Researchers identified a biomarker that can predict which women will respond to rucaparib, a PARP inhibitor. Rucaparib is an oral drug. Dr Elizabeth Swisher said "good responses to rucaparib in women with ovarian cancers exhibiting a form of cell damage called genomic loss of heterozygosity (LOH), in which an entire chromosomal region on one copy of the genome is lost" as well as in those who have BRCA1/2 mutations. (http://www.medicalnewstoday.com/releases/285788.php)

Trebananib Fails to Improve Overall Surviva

The trial, TRINOVA-1, tested  Amgen 's drug, trebananib along with Placitaxel. Results show that there was not a significant improvement in overall survival trebananib was used.
Reuter's article - http://www.reuters.com/article/2014/11/04/us-amgen-study-idUSKBN0IO1EW20141104?feedType=RSSfeedName=healthNews


Dee
Every Day is a Blessing !


Monday, November 17, 2014

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

Friday, November 7, 2014

The Words I Use

Over the past few weeks I have taken part in a number of tweet chats and Facebook discussions that revolve around the words we use when we are diagnosed with cancer.

People diagnosed with cancer and those who treat them often use the term "survivor". The NCI definition of survivor is:

 "One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.".

When I was in treatment I called myself a cancer patient. When I finished treatment I called myself a survivor and that word choice was solidified when I attended the LiveSTRONG Survivors Summit in 2006. Then I recurred, I wasn't sure what to label myself- I was a cancer patient and a survivor.  At the time I was on my cancer center's Survivorship Day planning committee.  I even questioned whether or not it was OK that I be a committee member since I had recurred and was back in treatment. The chair told me she considers everyone from the day of diagnosis as a survivor. Since that day whether I am in treatment or not I have called myself a survivor.

I know there are women with recurrent ovarian cancer or metastatic breast cancer who don't like the term survivor. Susan Gubar shares her thoughts on words like survivor in this article from 2012.
( http://well.blogs.nytimes.com/2012/09/06/not-a-cancer-survivor/?_php=true&_type=blogs&_r=0 ) Women are looking for a different word to describe their situation. What to you say when you are living with cancer? What about women who are living for long periods of time with stable disease and are not in treatment? I have read that some use the word "thriver" . That is an interesting word - thriving while in treatment and thriving between treatments.

In other online discussions, I have found people do not like using words that relate cancer to terms of war such as battle or fighter. When I was in treatment I felt I was in a battle. I was in a battle for my life. And my weapons were the chemotherapy drugs I took and the support I had and the prayers I said. I visualized the chemo traveling via my blood into the cancer cells and killing them. Yes, I fought cancer. And I would not have been able to do that without the expertise of my doctors and their surgical skills and their ability to offer me clinical trials and chemotherapy options. Will I recur? I'm not sure but if I do I will fight again.

Do I think any less of women like Pam, Sharon, Rita Kay, or any of the other women from my support group who died because of their disease. No. Do I think they didn't fight hard enough? Heck NO! If their families want to say they "lost their battle" I am OK with that.  And if you are in cancer treatment and you disagree with me that's OK you may have your opinion and I have mine. Two pieces, one by Aria  Jones (http://www.mcsweeneys.net/articles/an-open-letter-to-people-who-use-the-battle-metaphor-for-other-people-who-have-the-distinct-displeasure-of-cancer  ) and one by Kate Granger (http://www.theguardian.com/society/2014/apr/25/having-cancer-not-fight-or-battle ) offer the opposing view. This article "Fighting Battles and the Language of Cancer"in  Journeying Beyond Breast Cancer  discusses metaphors and feelings of guilt in those with terminal disease (http://journeyingbeyondbreastcancer.com/2014/11/06/fighting-battles-and-the-language-of-cancer/) but suggests the metaphors are important as a tool to handle our experiences . You may make up your own mind as to which terms work best for you.

I know by putting my thoughts and opinions on this page I open myself to people who will disagree with me. That is fine as long as you do so while respecting my opinion of the words I choose to describe my journey with cancer.

Dee
Every Day is a Blessing!

Tuesday, October 28, 2014

A Symptoms Worksheet

My friend and fellow ovarian cancer survivor, Tina Rangel founded an ovarian cancer awareness organization called Teal Tender Hearts for Ovarian Cancer Awareness. You can read her story on the #gyncsm blog.
 
Tina developed this awesome symptom sheet as part of the Break the Silence on Ovarian Cancer Campaign. By using the sheet women can keep track of the symptoms ( bloating , frequent urination, feeling full quickly and abdominal or pelvic pain) of ovarian cancer, list their cancer history as well as that of family members. This sheet can then be shared with the women's healthcare provider.







Teal Tender Hearts for Ovarian Cancer Awareness can be found on Facebook. Thank you Tina for all you and your family do to raise awareness.


Dee
Every Day is a Blessing!

Monday, October 6, 2014

Ending a long term relationship

Today was a big day for me. After 9 years and 57 days I had my port removed.

My husband drove me up to Robert Wood Johnson University Hospital (RWJUH), I registered for the procedure and went downstairs to Interventional Radiology (IR) . This was the exact place where my port was inserted on August 9, 2005. It seemed like ages ago.

The IR nurse checked my history and confirmed my meds. All my previous surgeries have taken place at RWJUH so most of the information was already available so all I had to do was confirm it. (BTW: I was asked if I had traveled outside the US in the past 3 months.)  I then dressed in one of those stylish gowns with the wide open backs and got ready to be taken in. The PA who was doing the procedure also came to see me and went over exactly what she would be doing and asked if I had any questions.

As other patients were being treated I laid there thinking about what was actually taking place. I was giving up my port. I was ready. In the past I have been fearful to get the port removed. Afraid that if I took out the port my cancer would return . My veins are not the best and I have always been concerned about having to have IVs through my veins. But now that I am down to one CT scan a year I am ok with the uncomfortable sensation and pain I get when an IV is inserted. And now that I am 5 years from my recurrence  I am ready to say that I might not recur any time soon. 

 My nephew's friend, a nurse in that area, rolled me into the procedure room and stayed with me during the procedure. As I was moved onto the table and being covered with a warm blanket in walked the doctor who had inserted the double port 9+ years ago. He was happy to see that I was getting the port out and wished me luck.

As the PA injected the anesthetic into the area where my port has resided for the past few years she apologized for causing me discomfort. I told her that compared to accessing my port without any lidocaine cream this wasn't painful at all. She continued with the procedure asking me how I was diagnosed, who was my gyn-onc and who did my spleen and liver surgery. We chatted while my nephew's friend held my hand. I felt pulls and tugs and then she said it is out. WOW! She then asked one of the techs to clean it so I could take it home. Yes, I had asked to take this part of me home.

She stitched me up, put on the dermabond and I thanked her for doing the procedure with such care.

Back in the recovery room I was given my discharge instructions and my port in a small plastic container. As I left the nurse turned to say goodbye and told me she hopes she doesn't ever have to see me again. I hope so too.


Dee
Every Day is a Blessing! Blessed to be treated at RWJUH.