Sunday, January 31, 2016

My Extraordinary Healer

Over the past few years I have read CURE® Magazine. I have especially like reading the the stories written by patients about their relationships with their oncology nurses. The Magazine runs a contest in which patients nominate their oncology nurses for the Extraordinary Healer® Award for Oncology Nursing. Contest finalists attend the Oncology Nursing Society's (ONS) Annual Congress where the winner is announced.

Last year,  I decided it was time for me to write about my relationship with Carla, one of the many special oncology nurses at the Rutgers Cancer Institute of New Jersey. Although we didn't win the contest we were still honored to have my nominating essay as part of the collection shared in  CURE® Magazine's book,  extraordinary healers volume 9.  CURE® produced the book with the support of Novocare, Takeda Oncology and Amgen. Thanks Novocure, Millenium Takeda Oncology and Amgen for supporting this project.

Cover Vol 9 extraordinary healers
My essay / photo of Carla and I



My Essay page 2


Imagine how happy I was when I turned the book over and saw this quote from my essay. 

"What makes an extraordinary nurse? One who listens to their patients during their very first treatment and provides excellent oncology care - with a large dose of compassion when the unusual occurs."




Carla certainly made a difference in my chemotherapy experience. She is more than my nurse she is my friend.

If your life has been touched by an amazing, compassionate oncology nurse I urge you to nominate your nurse this year for CURE® Magazine's Extraordinary Healer® Award for Oncology Nursing.
For more information please see:  http://www.curetoday.com/extraordinaryhealer 

Dee
Every Day is a Blessing! And my life was blessed by Carla.



Monday, January 11, 2016

More than just BRCA1 & 2

Most women diagnosed with ovarian cancer have heard of the link between germline mutations in the BRCA 1 & 2 genes and ovarian cancer. The Society of Gynecologic Oncology recommends that all women diagnosed with ovarian cancer have genetic testing for those mutations. Studies have also found that Lynch Syndrome ( formerly known as “hereditary nonpolyposis colorectal cancer” (HNPCC) ) places a women at increased risk for ovarian cancer. I wrote about these germline mutations in a blog post in September 2015.

On December 30, 2015 JAMA Oncology journal published the article

Inherited Mutations in Women With Ovarian Carcinoma


This study of 1915 women looked at the importance and prevelance of other germline ( passed from parent to child) mutations associated with ovarian cancer.

They found that 18% of the women studied carried
"pathogenic germline mutations in genes associated with OC risk. PALB2 and BARD1 are suspected OC genes and together with established OC genes (BRCA1, BRCA2, BRIP1, RAD51C, RAD51D, MSH2, MLH1, PMS2, and MSH6)"

So we now have 11 genes suspected of causing hereditary ovarian cancer. (Since the article is behind a paywall I could not access the complete study.) A commentary on that research can be found here. The commentary raises the issue that the mutations to BRIP1, RAD51C, RAD51D  and BARD1 have not been well characterized and have uncertain clinical use at this time when compared to BRCA 1 & 2. 

The commentary states that investigators should look at "different paradigms for identifying key new factors and mechanisms underlying OC risk" I look forward to those studies.

Dee
Every Day is a Blessing! 
 


Additional Sources:
Ovarian Cancer Risk and Prevention
http://www.cancer.net/cancer-types/ovarian-cancer/risk-factors-and-prevention
Lynch Syndrome
http://www.cancer.net/cancer-types/lynch-syndrome
Hereditary Breast and Ovarian Cancer
http://www.cancer.net/cancer-types/hereditary-breast-and-ovarian-cancer

Friday, January 1, 2016

Here We Come 2016

I had a wonderful 2015. I attended my son's wedding, raised over $3000 for ovarian cancer research at Rutgers Cancer Institute of New Jersey, and walked a 5K at Disneyland with my daughter to celebrate my 10th cancerversary .


I spent lots of fun times with family and friends. But there were some more challenging times too. My husband had some health issues and a surgery and I dealt with a knee injury, neuropathy and chemobrain. I also said farewell to three women who I met through an ovarian cancer support group and the Graceful Hope Foundation - Jeanne, Linda and Corinne. I know this sounds corny but I do feel blessed to have lived another year. 

For the past few years my first post of the new year includes a list my aspirations for the coming year. Resolutions are so 2010. I looked back at the aspirations I made at the beginning of this year. It seems like most of the things I looked forward to doing last year (in italics) are what I still want to do this year so I'll repost the list and add some new items.
  • Continue to visit my children and grandchildren(Visiting my grandsons will be more difficult after they move overseas in May.)   
  • Visit India
  • Continue to advocate for ovarian cancer patients and research through this blog and the #gyncsm community
  • Learn more about non-profit management and social media 
  • Apply to attend the Biennial Survivorship conference and ASCO annual meeting
  • Help my dog, Amber, achieve her Excellent title in Standard Agility ( Amber did get her AKC Excellent title in Jumps with Weaves)  
  • Register Amber for UKI agility
  • Continue to increase my physical activity and flexibility so that I can be a better dog handler and improve my health
  • Continue to paint (Would love to try my hand at trompe l'oeil and pieces of furniture)
  • Visit the state of Maine
  • Take an online course - maybe art history, public health or theology
I hope the year ahead is filled with lots of adventure and few doctor visits for all.

Dee
Every Day is a Blessing!




Monday, December 28, 2015

Another Year of Blogging, My Eighth

December 30th marks my 8th year writing this blog.When I first began I knew I wanted to raise awareness of the disease, share my story with other women diagnosed with ovarian cancer and disseminate information about cancer survivorship. I wasn't sure how long I would continue posting to Women of Teal. Would I be well enough to post? Would I run out of things to write about?

This is my eighty-first post of the year, more than last year but not as high as 2009 or 2012 years in which  I wrote well over one hundred and fifty posts. When looking back over the past year's posts the majority of what I wrote related to ovarian cancer research ( SGO and ASCO annual meetings ) as well as study results reported in journal articles.

My most popular posts were:

Part 1: Using the Risk of Ovarian Cancer Algorithm for Screening - US launch

Part 2: Using the Risk of Ovarian Cancer Algorithm - UKCTOCS Study Mortality Results

ASCO 2015 - Connections and Knowledge

During the month of September I took the GCAM ( Gyn Cancer Awareness Month) Challenge. I posted each day on gyn cancer topics from ovarian cancer - risks, treatment, genetics to cervical cancer, HPV and precision medicine.  In other posts this year I've written about:
  • books I've read and the book I wrote with Dr Don Dizon
  • what I learned about the CA-125 test and the two lab processes to measure it
  • NED the Band and the Movie
  • The Astra Zeneca Bloggers Conference
  • Presentations I made to Rutgers University AMSA students and  Eye for Pharma's Patient Summit
There were times though when I wrote about more personal issues.  I miss many of my teal sisters and wrote frequently about the effect they had on my life. I look forward to continuing to write in 2016. I do this with the hopes that sharing what I learn at conferences or reporting on the latest research will be beneficial to my followers.

Thank you to all who followed, commented or e-mailed me this year I appreciate interacting with all of you. Please let me know if there are any topics you would like me to write about in 2016 .

See you in 2016!

Dee
Every Day is a Blessing!

Sunday, December 20, 2015

Part 1: Using the Risk of Ovarian Cancer Algorithm for Screening - US launch

Last June, when I attended the ASCO annual meeting I was fascinated by a presentation by Dr Usha Menon on the UK Collaborative Trial of Ovarian Cancer Study (UKCTOCS) using the ROCA (Risk of Ovarian Cancer Algorithm) test. I wrote about it here.

Results reported in this JCO article,
Risk Algorithm Using Serial Biomarker Measurements Doubles the Number of Screen-Detected Cancers Compared With a Single-Threshold Rule in the United Kingdom Collaborative Trial of Ovarian Cancer Screening
found that using the risk algorithm detected double the amount of invasive epithelial ovarian cancers, before the CA-125 alone, at a fixed, 35u/ml cutoff. .

Earlier this month I was contacted by a representative of the PR firm that is representing Abcodia, a company that develops early detection tests for cancer. On December 2, 2015  Abcodia launched the ROCA (Risk of Ovarian Cancer Algorithm) test here in the US. After finding and reading my blog, the  firm contacted me to share that the test was now available. Of course I was interested in learning more about this test that was now available in 5 states - Texas, Massachusetts, Illinois, Arizona and my home state of New Jersey. You can find the press release at http://www.abcodia.com/news_021215.php.

We conversed via e-mail and then I had a teleconference with the PR firm's representative as well as the representatives from Abcodia.  Abcodia's  responses to my questions are shown below in quotes and italics. I have permission from Abcodia to share the information provided.

  • What is the difference between the ROCA test and the CA-125, which is one component of the ROCA test? "The ROCA Test does not use CA-125 with a fixed cutoff, instead, ROCA establishes a patient’s baseline, and then evaluates her CA-125 pattern over time."  (CA-125 uses a fixed cut-off of either 35 u/ml or 20 u/ml depending on which test protocol is followed. "ROCA incorporates the CA-125 result (and all the following CA-125), and, factors in age,
    menopausal status and high risk factors, which affect CA-125 levels. ROCA takes all of this data on one patient and creates a unique profile for her.  ROCA then compares her profile to known profiles in a database of thousands of women to see if her profile more closely resembles that of  women who have cancer or women who do not have cancer.  The ROCA Test reports a
    numerical score which represents a woman’s risk of having ovarian cancer (e.g. 1 in 5,000) now. The risk score is categorized as Normal, Intermediate or Elevated as a guide for clinical decisions by your doctor."
  • Who is the ROCA test meant for and when should they have it? The ROCA test is meant for women in the general population who are "Between 50 and 85 years and have been through menopause; or"  high risk women "Between 35 and 85 years with a family history of ovarian and/or breast cancer, are of Ashkenazi Jewish descent with a known family history of ovarian or breast cancer, or have tested positively for BRCA1, BRCA2 or Lynch syndrome gene mutations." The CA-125 may be used for high risk women only. The test would be similar to "Routine testing, just like you would a physical or mammogram." Currently the CA-125 with a fixed cutoff is sometimes used for high risk women only when advised by their physicians. As many of my readers know, the CA-125 is used by gynecologic oncologists to manage the care of women who have been diagnosed with ovarian cancer. 
  • How does the ROCA test compare to the CA-125 in terms of how well it detects ovarian cancer?"When combined with appropriate clinical follow-up, the ROCA Test has been shown to detect more than twice as many ovarian cancers before the current CA-125 35U/ml fixed cutoff. As a screening tool by itself, CA-125 is not reliable and has not been shown to improve outcomes for women with ovarian cancer."
  • How does a woman go about getting the test?  She fills out a form online to see if she is eligible and orders the kit. Then she finds a referring physician (OB-GYN or primary care physician) to sign the request for the test and the blood work. "Abcodia is proactively educating OBGYNs, has a dedicated phone line and online materials specifically for healthcare professionals."
  • What is the cost of the test and is it covered by Medicare, other insurances? "The cost of each ROCA Test is $295. This includes the cost for the Iggbo blood draw service, who will have a trained phlebotomist come to a doctor’s office, a patient’s home or other location of the patient’s choice to draw blood.  Iggbo will then ship the blood sample via FedEx to Abcodia’s laboratory." Abcodia's lab is a CLIA, registered lab. Currently the test is not covered by Medicare or other insurances. "Abcodia does plan to seek regulatory and reimbursement approvals"
  • Can a woman get the CA-125 drawn at a different lab and then submit it to Abcodia? It is recommeded that the blood draw be through Abcodia's blood draw partner, Iggbo. A patient can have her blood drawn at her physician's office or a hospital if a phlebotomist is available. All samples do need to be tested at the Abcodia lab to insure there is no lab to lab variability. CA-125 test results from other labs (Quest, Labcorp) for use with the test are not accepted.
  • What happens after the initial result? "The frequency of the ROCA test will be determined by the woman's doctor based on her risk factors for ovarian cancer and the ROCA test result. Post menopausal women with no additional risk factors will likely have one test per year. Women at high risk for ovarian cancer , will complete the test more frequently, at a minimum three times per year and may include a Transvaginal Ultrasound (TVU). If the result falls outside of the normal range(intermediate or elevated) a doctor may recommend a repeat ROCA test within the next six weeks to three months. Patients may also be referred for a transvaginal ultrasound scan of the ovaries or other possible clinical assessments. "                                
  •  Does the women pay $295 each time she has a follow-up test?"After a patient takes her first test, Abcodia offers the patient several options: 1. The patient can pay per test ($295) for each test. 2.  The ROCA Test Subscription: one for high risk patients and one for the general population.  Abcodia will offer patients a 2 year subscription that includes the Iggbo blood draw, repeat ROCA tests and TVU (Transvagina Ultrasound) as a result of intermediate, elevated or severe ROCA result. 3. Interest free payment plans."
  • Why is the test available in only five states ? Starting in five states will allow the test process to be optimized. The delay with other states is due to each individual state's permit application period and process. Some are longer than others.


This video is an overview of how the ROCA test works.



I have charted my CA-125 results since my initial diagnosis. So monitoring the trends in CA-125 makes sense to me. But there is one caveat, there is a small percentage of women, like myself, who have a CA-125 result that is normal and disease may be still present. My CA-125 was normal at 17 u/ml,  when I learned via CT scan that I had recurred on my liver and spleen. So woman whose CA-125 does not rise may not benefit from this type of screening.

I still had a few questions about applying this test to the general public. I wondered if the ROCA test would find the disease at an earlier stage and if the survival would be longer for women whose disease was detected by this test.   I did not have to wait too long for some of the answers because on December 17th the results were published in the Lancet journal.

Ovarian cancer screening and mortality in the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS): a randomised controlled trial 

My next post will discuss what was reported in this article as well as responses from various ovarian cancer organizations and oncologists.  

 Dee  

Every Day is a blessing!

Updated 12/21/15



Part 2: Using the Risk of Ovarian Cancer Algorithm - UKCTOCS Study Mortality Results

In Part 1 I discussed the Risk of Ovarian Cancer Algorithm screening test and its release in five states in the US.

On December 17th,  Ovarian cancer screening and mortality in the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS): a randomised controlled trial was published in the Lancet journal. This was an answer to my question regarding improved survival for those women screened using the ROCA/ CA-125. 

Details:
ClinicalTrials.gov, number NCT00058032
Randomized Trial: 202,638 Post menopausal women 50-74  from England, Wales, Northern Ireland
Three arms:  
1. Annual Multimodal Screening (MMS) using CA-125 and risk algorithm ( 50,624 women ). I call this arm the ROCA test but will use MMS when discussing the study.
2. Annual transvaginal ultrasound (TVU) (50,623 women)  
3. No screening ( 101,299 women) .  The distribution ratio was 1:1:2.

OC was diagnosed in 1282 women of all women
630 cases in the unscreened women with 347 deaths
338 cases in the screened with CA-125 and ROCA 148 deaths 
314 cases in the ultrasound screen group and 154 death. 

One analysis showed less deaths in the MMS and TVU groups but the difference was not significant.
Mortality reduction using the Cox Model for years 0-14 showed a 15% reduction in deaths in the MMS group versus the control group. And there was an  11% reduction in mortality in the TVU group versus the control group. Graphs of the control versus MMS and control vs TVU are the same up to about 10 years. If you look at specific time periods there is a change in mortality reduction. For MMS the 0-7 time period showed an 8% reduction vs control and for 7-14 year time period  there was a 23% reduction in mortality versus the control. 

A second analysis which removed women,who had ovarian cancer before the screening of the trial began and who died early on in the study ( "prevalent cases" in which the change point in the CA-125 occurred before enrollment in the study) found that the MMS group had an average of 20% less deaths for the entire study ( 0-14 years) .

You may view watch this video ( 2hours 40 minutes) of the UKCTOCS Ovarian Cancer Mortality Results Meeting ( includes psychosocial evaluations of participants as well as mortality data ):


During this video it was stated that these early results from the UKCTOCS ( no significant p value)  is similar to the results of the late effect seen in the PSA European study( for prostate cancer) and time is needed to follow-up and confirm late effects. 


Discussion of the results:
There were media articles ( NYT)  written stating that early detection of ovarian cancer was now possible because of this test. 

Medpage- Ovarian Cancer Screening Study Falls Short 

A press release from Abcodia may be found here.

Ovarian organizations commented on the results : 

OCRF -
"While we join the researchers in their optimistic outlook and are hopeful that more positive results will be released in the future, today we must acknowledge that the results do not show that screening works."
 http://www.ocrf.org/news/research/study-results-show-ovarian-cancer-screening-doesnt-save-lives-researchers-optimistic-about-future-results

OCNA -
“These initial results are promising for the ovarian cancer community, but there is much more data analysis needed in the coming months to determine the true impact on the future of early detection testing for ovarian cancer. We are looking forward to discussions with the community in the coming months to understand how ROCA may fit into the prevention of ovarian cancer."


For me questions still remain.
What was the grade of the women that died during the study?  I know from the previous JCO article that 82% of the  women in the study diagnosed with Ovarian Cancer were high grade. How did that correlate with those who died. 

From the JCO article 41 % of the women dx with OC in the MMS arm were stage 1 or 2. How does that relate to their mortality?

What I wish I knew:
Does the ROCA / CA-125 test work on women earlier than age 50? Those that are pre-menopausal?

If you were able to look at the BRCA status of the women in the study would that effect the results? (Is the test better on those with a BRCA mutation?

As many others during the past few days have said. This is promising but more work needs to be done. 

Dee
Every day is a blessing!
updated 12/21/2015

Saturday, December 12, 2015

Hitting the DELETE button

I upgraded my phone the other day. In case the data transfer did not work correctly, I decided to go through my contacts and make sure I had all the important phone numbers.

Right up front under letter B was Jeanne Burton. We met each other at the Rutgers Cancer Institute of NJ support group . We talked a few times by phone but once she moved back to Maine it was mostly texts and e-mails.  She would text me updates- "Found a palliative care doctor", "really like my new oncologist" and " you should come visit" .  I wrote about her move to Maine  here. I regret never getting up to Maine before she passed on June 21, 2015. I wrote about the choices she made here.  I deleted her contact info.

Then under C was Courtney Clifford.  Courtney and I became friends in 2006 at the LiveSTRONG Survivors Summit. She experienced the same symptoms I did and was diagnosed a few months after I was.  The difference was she was 23 years old and I was 50. She was the youngest woman I had ever met who had ovarian cancer. We kept in touch through the years and saw each other at the 2008 LiveSTRONG Summit in Ohio her home state. I appreciated her long distance friendship. Sadly I had to write about her passing in 2012 (http://womenofteal.blogspot.com/2011/02/courtney-1982-2011.html) . I deleted her cell phone number.

I got to the letter F and there she was - Pam Favocci. I met Pam at the Rutgers Cancer Institute of NJ Support Group. Over the years we became close friends and together we took part in many awareness activities together. On December 14th she will be gone 3 years.  I honored her in A Friendship Ended Too Soon. I deleted her home number.

Then I got to J and there was Linda Juarez. A few years ago my gyn onc asked if I would talk to Linda. Out of that simple introduction a friendship grew. We both recurred in 2008 and that brought us even closer. We had late night phone calls about clinical trials and texts would arrive during her frequent hospital visits.  She passed in May this year and I  wrote about her here. I deleted her number.

I was a bit surprised when I got to T and I found Rita Kay Thomas' phone number. I forgot I had her phone number in my phone. When I was in college I first met Rita Kay - she was the Assistant Athletic Director. Who knew that our paths would cross 30+ years later. Ovarian Cancer took this amazing woman too soon in October 2012. I wrote about our friendship here. I deleted her number.

I thought about each of those women as I deleted their numbers.

I hated doing it because such a simple action triggered a deep sadness.


Dee
Every Day is a Blessing