Wednesday, August 24, 2016

Between a Rock and Hard Place - Surveillance after an Ovarian Cancer Diagnosis

The Study:
A recent journal article in JAMA Oncology,  " Use of CA-125 Tests and Computed Tomographic Scans for Surveillance in Ovarian Cancer"  concluded
"CA-125 tests and CT scans are still routinely used for surveillance testing in patients with ovarian cancer, although their benefit has not been proven and their use may have significant implications for patients’ quality of life as well as costs."

I am unable to read the entire article since it is by subscription only but will summarize the information that was provided and in other articles I read regarding the research.

In 2009, a study (Rustin)  found that treating ovarian cancer recurrence on rising cancer antigen blood test CA125 increased the use of chemotherapy treatment and decreased quality of life.

This prospective cohort study of over 1200 women, in remission after initial surgery and chemotherapy, took place at 6 NCI Comprehensive Cancer Centers. They looked at the use of CA-125 and CT scan before and after 2009.

The results showed the use of CA-125  and CT scan before and after 2009 was similar. In those women whose CA-125 doubled there was not difference in re-treatment before or after 2009. The study found in a 12 month period "a mean of 4.6 CA-125 tests and 1.7 CT scans performed per patient". They found that this resulted in  "a US population surveillance cost estimate of $1 999 029 per year for CA-125 tests alone and $16 194 647 per year with CT scans added." 

The Guidelines:
Why has the use of CA-125 and CT not change since 2009? Maybe a reduction was not seen because of what is written in the NCCN Guideline for Ovarian Cancer released in 2015.
The NCCN Guideline for Ovarian Cancer recommends follow up tests every 2-4 months for 2 years then every 3-6 months for 3 years then once a year after 5 years. The tests recommended are :
Physical and pelvic exam
CA-125 if initial results were high. 
CT, MRI , PET as needed
Chest X-ray as needed
Genetic counseling if not already done.

SGO Recommendations:
In 2011 the paper
Post-treatment surveillance and diagnosis of recurrence in women with gynecologic malignancies: Society of Gynecologic Oncologists recommendations

These recommendations were made:
SGO lists  the CA-125  as optional for surveillance in previously diagnosed women.

They stated: "Until the ideal surveillance is determined, individualized patient plans that consist of a thorough assessment of symptoms and physical examination, which includes a pelvic examination,should be undertaken. The role for CA125 level monitoring should be discussed with patients. The pros and cons of imaging should be discussed with the patients who do not have an elevated CA125 level at the time of diagnosis.When a recurrence is suspected based on symptoms, examination, or CA125 level,a CT scan of the chest, abdomen, and pelvis should be obtained to determine the extent of the disease. PET scans are a useful adjunct when CT scans are indeterminate (Table 3)."

My Commentary: 

My recurrence on my liver and spleen in 2008 was picked up on a follow-up CT scan.  My CA-125 was 17 up from 13. I wasn't worried about a recurrence at the time because my CA-125 was still normal but there it was. I'm thankful that the CT scan was done so that one of my treatment options could be surgery then chemo. My CT showed only 2 distinct lesions so I chose to have surgery first.

When the 2009 study came out, I told my gyn onc that I no longer wanted to have the CA-125 test done.  We agreed that I would not begin treatment for a recurrence unless I had symptoms or something showed up on a CT scan but I continued to have the CA-125 test.

Based on my personal experience when CA-125 goes up even a little bit I get anxious and think recurrence.  I agree and understand that chemotherapy treatment should not begin on a rising CA-125 alone. But what about the fear and anxiety that a women feels during the watch and wait period?

I also know that radiation from multiple CT scans raises my risk for other cancers.  But right now there is no other way ( unless I use an MRI or PET) to determine if I am having a recurrence. With data showing the rate of recurrence in ovarian cancer is very high, what is a woman to do? 

Based on the SGO and NCCN guidelines a  personalized approach to determining surveillance is what is needed until as the SGO paper stated "the ideal surveillance is determined"

Every Day is a Blessing!

Monday, August 22, 2016

NJ Ovarian Cancer Awareness Month Events

September is National Ovarian Cancer Awareness month and Gynecologic Cancer Awareness Month. You can raise awareness and funds for research by taking part in one of these events held throughout the state of NJ. Organization's whose events are featured in this post include: Janice Lopez Ovarian Cancer Foundation, Kaleidoscope of Hope Ovarian Cancer Foundation, The NOCC New Jersey Chapter and The Teal Tea Foundation.

If you are organizing an  event in NJ please e-mail me and I will include your information in this post.

Every Day is a Blessing!

Janice Lopez Ovarian Cancer Foundation 
Sunday Sept. 25,2016

3rd Annual Concert for a Cure - The Encore Orchestra of NJ

Purchase tickets online at


Kaleidoscope of Hope Ovarian Cancer Foundation Events:

Sunday, Sept. 18, 2016 - The Gail MacNeil Morristown Walk
Loantaka Brook Reservation, 468 South St. Entrance, Morristown, NJ
Saturday, Sept. 24, 2016Avon Walk
On the Boardwalk at 600 Ocean Avenue, Avon-by-the-Sea, NJ
Sorry, no dogs allowed - Special Passing The Torch presentation  (see below)

Sunday, Sept. 25, 2016 - The Diane Castle Lyndhurst Walk -
Richard W. DeKorte Park,  Valleybrook Ave., Lyndhurst, NJ
Sorry, no dogs allowed

Online registration :

National Ovarian Cancer Coalition-NJ Chapter Events:

Wednesday, Sept. 7, 2016
Sky Blue FC / NOCC Night
Buy tickets on this website:
(CASE SENSITIVE) password: skybluenocc

 Friday, Sept. 9, 2016 

 Sunday, Sept. 25, 2016
Mayor's 5K Run/Walk 


Teal Tea Foundation 

Sunday Sept. 18, 2016 

Color Me Teal Run/Walk 

Wednesday, August 10, 2016

Neoadjuvant Chemotherapy Guideline for Advanced Ovarian Cancer

I was privileged to represent women diagnosed with ovarian cancer as the patient representative/advocate on the the joint SGO / ASCO guideline panel  that developed the recently released:

Neoadjuvant Chemotherapy for Newly Diagnosed, Advanced Ovarian Cancer: Society of Gynecologic Oncology and American Society of Clinical Oncology Clinical Practice Guideline

It was a process that took over a year, a few meetings (in-person and online), and many e-mails. During the entire time I felt that the "patient voice" was an integral part of the process. 

Thank you ASCO, SGO and Drs Alexi Wright and Mitchell Edelson, Guideline Chairs,  and the entire panel for giving me this opportunity. 

Every Day is a Blessing

Wednesday, July 27, 2016

We Talked...

Earlier this week I met my friend, Sandy, for lunch. Sandy and I first meet when we attended the Gynecologic Cancer Support Group meetings at our cancer center in 2007. We were both diagnosed in 2005 with stage 3 serous epithelial ovarian cancer. We became friends and have stayed in touch even though Sandy now lives half the year in the Florida Keys.  Since she returns to NJ for the summer, we took this opportunity to get together.

Our lunch conversation was not about politics or the heat wave. Nope we talked about our gynecologic oncologists and our nurses. Even after more than ten years, those doctors and nurses still play an important role in our lives. Both our doctors are practicing in different locations now. So we talked about what went into the decision to stay at our cancer center or follow them to their new locations. Not an easy decision at all.

Then we talked about how even 11 years out,  we still worry about a recurrence. We laughed about how we can't multi-task any longer because when we do, we forget things. We weren't talking about forgetting where we left our keys or glasses. We were talking about finding the right words / names for things. We talked about how on some days we still need to nap because we are too exhausted to function properly. We talked about how our toes are still numb and how we can literally trip over our own feet- and it is not the shoes we are wearing.  We talked about how we still get nervous when we need to have our blood drawn for our CA-125 level. We talked about gaining weight. Do you feel bloated? ( One of the signs of ovarian cancer.) We talked about how neither of us have had a CT scan in over 2 years. Should we get one? We don't want to expose ourselves to the radiation but we know that for us that is the only way we will find a recurrence. Decisions, Decisions.

I talked about my advocacy work and she talked about her paintings and recent gallery exhibits. We talked about our families. We have been blessed and we have accomplished a lot over the past 11 years.

Then we talked about Pam and Sharon and Rita Kay and others from our support group. We can't understand why we are two of the lucky ones- women who have lived ten plus years after an ovarian cancer diagnosis. Sure we try to exercise more and eat better - less red meat , more fruits and vegetables but nothing dramatic.

Honestly, we don't know why we are still alive... and why our friends are not...eleven years later.

Every Day is a Blessing! Blessed to be celebrating my 11th cancerversary on July 29th.

Thursday, June 30, 2016

NJ's Regional Moonshot Summit

Yesterday hundreds of researchers, oncologists, advocates,  insurance and pharmaceutical industry representatives met at Howard University in DC for the Cancer Moonshot Summit.

Here in NJ running concurrently with the DC meeting we held a regional Cancer Moonshot Summit.  As in DC advocates, insurance and pharmaceutical industry representatives, oncologists and others met at the Cancer Support Community Central New Jersey (CSCCNJ) to discuss the initiative. Cancer Support Community is a partner in the Moonshot Initiative lead by VP Joe Biden. The Regional Summit was co-sponsored by Rutgers Cancer Institute of NJ. This regional Summit was an excellent way for individuals to share their ideas and provide input to the  White House Cancer Moonshot Initiative.

The NJ Summit included watching VP Biden's speech from DC and a panel discussion. The panel included D. Toppmeyer, MD Rutgers Cancer Institute of NJ, U. Dugan, MD, PhD Bristol Myers Squibb, E. Levine LCSW, W. Wengel III Aetna, D. Gonzalez, US Dept of Health and Human Services and myself.

Panel participants .
Photo courtesy of @RutgersCancer
We discussed putting patients at the center - how to improve the experience of patients when initially diagnosed, after treatment as well as those treating cancer as a chronic illness as well as how to insure the information patients read online is accurate.  We also discussed the best way for oncologists in a community setting to be on top of the latest treatments and clinical trials. We ended with a short discussion of how to recruit patients to clinical trials and dispel the myths associated with clinical trials.

I was honored to be a part of this initiative. I am usually the one Tweeting from conferences but multitasking at this event was a bit of a challenge. So I share this Tweet with you. 

I have also submitted ideas to the Cancer Moonshot through the website. Do you have an idea? The site is live until July 1,2016 

As VP Biden said "This is Urgent" and I agree . This initiative gives me hope that we will develop a screening test.

Every Day is a Blessing!

Thursday, June 16, 2016

The Days of ASCO - Connections

In addition to being a medical conference where new research results and discussions take place,  the ASCO Annual Meeting is a great place to make connections with oncologists, researchers and advocates. I was able to rekindle friendships with advocates I met at the 2006 LiveSTRONG Survivors Summit and Stanford MedX 2014 and meet in real life folks I have been following on Twitter.

I stopped to say hello to Sarah from CHN. I volunteer with CHN.
I ran into one of my former RCINJ pharmacists in the Oncology Professionals Hall. 
I got to spend time with the #gyncsm Health Care Moderators, Drs Markham, Westin and Boulay at the ASCO Tweet-Up 
@corrie_painter and @womenofteal meet in person for the first time at the ASCO Tweet Up

#bcsm friends ( @stales, @DrAttai) and @SheWithLynch

@AliveAndKicknDD, @coffeemommy, @trwoodhull

So pleased I got to meet Lucy Kalanithi.(far right)  She spoke during the ASCO Book Club session about her husband, Dr Paul Kalanithi's book, When Breathe Becomes Air       

As I finish this last ASCO post I feel honored to have spent time with these amazing advocates, oncologists , physicians and researchers. I want to thank Conquer Cancer Foundation for supporting my scholarship to attend. 

Every Day is a Blessing!

Wednesday, June 15, 2016

The Days of ASCO - Biosimilars

Biologics are products that are made from living things - animals, humans, microorganisms. They are manufactured using bio-technology or other methods. They are usually large molecules, organic, complex mixtures and difficult to identify. Conventional drugs are chemical and their structures can easily be identified. Some examples of biologics are: Cytokines - interferon, Monoclonal antibodies - herceptin and vaccines. Biosimilars are biologics that are approved/ licensed by the FDA because they are highly similar to an already FDA approved drug. The FDA approved drug is called the reference product.

In the morning of Tuesday June 7,  I attended the ASCO session Biosimilars: Hear and Now
Speakers: Lemery, Weise, Esteva
Biologics have inherent molecular differences. They are not identical so they are not generics.Biotech/ drug companies with a biosimilar product must apply to the FDA for approval.
The general requirements are given below.

 Biosimilarity /interchangeability must be based on data from 
  • Analytical studies
  • Animal studies ( toxicity assessment) 
  • clinical studies ( pharmaokinetics and pharmacodynamics
If a product is given a biosimilar designation in the US than the product must be prescribed by the health care provider and should not be substituted ( by the pharmacist) without the intervention of the health care provider.

Biosimilarity is determined using the totality of the evidence. Analytical comparisons are the foundation for determining that the products are highly similar . There is no need to to re-establish safety /effectiveness of the biosimilar product.

Dr Weise provided an overview of biosimilar use in the European Union. The EU has been using a similar process to approve biosimilars for the past 10 years. The example discussed during the session was Filgrastim, biosimilar to Neupogen.

But there are challenges to biosimilars in the US. There is the need to regulate, monitor and track the safety in patients. Will the biosimilar be covered by insurance?  Will providers be willing to prescribe the biosimilar with the limited efficacy and safety data compared to the original biologic.

Dr Esteva raised another question in his presentation. Will patients accept the biosimilar drugs? As patients in the US play a greater role in their care the safety data and efficacy data of the biosimilars must be communicated with patients effectively.   Currently in the US Zarxio, a biosimilar to Neupogen,  has FDA approval. In development by Pfizer and Amgen are biosimilars to Trastuzumab ( Herceptin) .

One benefit of the use of biosimilars is a lower cost( ~30% lower) .

As I listened to this session I kept wondering what I would do if in the future I was offered a biosimilar. As someone who has had issues after being prescribed generic medications I would definitely ask my doctor to see the  clinical studies used in the approval process.

Every Day is a Blessing!

Additional sources of information: