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. (

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 -

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?

Every Day is a Blessing! 


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.
( ) 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 (  ) and one by Kate Granger ( ) 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 ( 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.

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.

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.

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

Sunday, September 28, 2014

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% ". 

Every Day is a Blessing! 

Sunday, September 21, 2014

Erika's Dream - A GRACEful Hope Walk

I have been busy for much of the month of September and have not been able to take part in many of the local Ovarian Cancer Awareness Month activities. So when Margaret invited me to the GRACEful Hope 1st Annual Walk I jumped at the chance to join her and the Rocha family.

I first met Margaret, Sergio and the rest of GRACEful Hope at their 2nd Annual Benefit in 2012. They invited me to share my story and it was a very emotional experience.( You can read about it here.)  Yesterday, the temperatures were perfect for a walk and it was wonderful to see the walk path lined with teal ribbons and balloons in Warinaco Park, Roselle, NJ.

We had pre-registered so we picked up our gift bags and t-shirts. The bags were filled with info about ovarian cancer and cancer research. After putting on the walk shirt I filled out the" In Suppport of" and "In Memory Signs"and Nick pinned them on my shirt. I walked in Memory of Grace, Erika, Shari, Stella and the ladies of my CINJ support group who died because of a gynecologic cancer. After the welcome speeches by Roselle Mayor Jamal Holley, Assemblywoman Quijano, and a Union County Freeholder Sergio Granados and a moving a capella rendition of the National Anthem, the walk that Erika had dreamed of began.

The path lead you around the park , past the lake, ball fields and playgrounds. I teared-up a few times   during the day, as I finished the walk feeling blessed to still be alive after being in treatment twice for the disease and when they asked for survivors to step forward.  It was wonderful to be able to catch up with other survivors Corinne, Dores, Tina, Jill, Jes and Terry.

GRACEful Hope expected 100-200 people at the event and there were over 500 participants. That is a testament to the wide reach of GRACEful Hope's efforts. Thank you GRACEful Hope for all you do to raise awareness and funds for research. You can find out more about future events by following them on Facebook.

Every Day is a Blessing!