Friday, December 30, 2016

Nine Years Ago

Has it really been nine years? I never thought when I started this blog on December 30, 2007 that I would be writing it so many years later. But here I am so here I write.

This year was not my most productive - this is my 41st post of the year. That is an average of only 3.4 posts per month.  In July I only wrote one post. In June,  I posted more than three because I couldn't wait to share all the research news I heard at the ASCO annual meeting. Attending that meeting as a survivor/ research advocate is a real privilege and I recommend that if you are a research advocate you apply for a scholarship to attend. Then in November I  tried the WEGOHealth Health Activist Writers Month Challenge but I ended up only writing seven posts. But I enjoyed the prompts that I did respond to.

My most popular posts of 2016 were:

So why did I blog less this year than any of the previous 8 years? I think it is due to an increase in my advocacy work over the past 12 months. I continue to  co-moderate the #gyncsm chat  (2nd Wed. of the month 9pm ET) and post on the communities blog (http://gyncsm.blogspot.com/).  This year we ran a survey so I worked with Christina ( @btrfly12) developing and analyzing the data from that survey to guide our future chats.We draft questions, invite guests, develop resources and promote this monthly chat as well as sharing on Twitter important developments of interest to the gynecologic cancer community on a daily basis. 

As a member of the  Board of the Kaleidoscope of Hope Ovarian Cancer Foundation, which raises funds for ovarian cancer research I oversee the social media (Facebook, Twitter) and the Foundation's website content.  I also volunteer with ASCO, serving as a patient representative on a tumor board and guideline panels.  Then I spent time in October working on a presentation and attending the AZ Patient Summit in Portugal. 

And of course time with family( always my first priority)  cut into the time I would spend writing blog posts. There are times I question whether or not I should continue writing this blog.  But I always come back to my original goal for the blog - to help other women diagnosed with ovarian cancer. Even if I help and support one woman a year I feel I've accomplished something.

So I will keep on writing.

Dee
Every Day is a Blessing! 


Friday, December 23, 2016

Season's Greetings

As I approach the sixth anniversary of writing this blog I want my readers to know how much I appreciate their support and the time you each take to read and comment on my posts. Thank you!

I wish my readers


Dee


Thursday, December 22, 2016

Last Research News of 2016 - Rubraca and FoundationFocus™ CDxBRCA

Another FDA approval for an ovarian cancer treatment happened this week.

"Rubraca is approved for women with advanced ovarian cancer who have been treated with two or more chemotherapies and whose tumors have a specific gene mutation (deleterious BRCA) as identified by an FDA-approved companion diagnostic test." - FDA (http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm533873.htm)

Rubraca (rucaparib) is a PARP (poly ADP-ribose polymerase)  inhibitor made by Clovis Oncology. The approval is based on two trials. One of the trials is the ARIEL2 trial. In that trial the duration of response was 11.6 months. 

Along with Rubraca, the FDA also approved the  FoundationFocus™ CDxBRCA companion diagnostic to identify those women diagnosed with ovarian cancer who have a BRCA mutation.  This is the first next-generation-sequencing (NGS)-based companion diagnostic approved by the FDA. The test by Foundation Medicine, Inc.  can test for both germline and somatic BRCA mutations in tumor tissue. Germline are inherited mutations and somatic are acquired mutations. 
 
Sources :



Dee
Every Day is a Blessing! 

Saturday, December 17, 2016

Avastin ( Bevacizumab) Approval Expanded for Platinum Sensitive Ovarian Cancer

Earlier this month the FDA approved the expanded use of Avastin (bevacizumab) for platinum sensitive ovarian cancer (OC) . Being platinum sensitive means that a women has a recurrence 6 months or more from her last treatment.

Avastin may be used for:
"Recurrent epithelial ovarian , fallopian tube or primary peritoneal cancer that is
  • platinum-resistant in combination with paclitaxel, pegylated liposomal doxorubicin, or topotecan
  • platinum-sensitive in combination with carboplatin and paclitaxel or in combination with carboplatin and gemcitabine, followed byAvastin as a single agent (1.6) "
The complete label of use for Avastin / bevacizumab may be found here.

This approval is based on two phase III studies. One study, GOG-213, showed a 5 month longer overall survival for women with platinum sensitive OC when treated with  bevacizumab and chemotherapy versus chemotherapy alone. The other study, OCEANS, showed a median progression free survival of  4 months for those receiving Avastin and chemotherapy versus those receiving placebo and chemotherapy.

Avastin had previously been approved in 2014 for women with platinum resistant ovarian cancer, fallopian tube and primary peritoneal in combination with paclitaxel, pegylated liposomal doxorubicin or topotecan chemotherapy.


Dee
Every Day is a Blessing! Happy to see more options for women with platinum sensitive OC. 



Sources
Roche:
http://www.roche.com/media/store/releases/med-cor-2016-12-07.htm

Cure Today:
http://www.curetoday.com/articles/avastin-gets-expanded-fda-approval-for-platinumsensitive-ovarian-cancer 

Genentech:
https://www.gene.com/media/press-releases/14647/2016-12-06/fda-approves-genentechs-avastin-bevacizu

Wednesday, November 30, 2016

She Gave Many Hope

I first spoke with Lois Myers in early 2007.  She had been diagnosed in 1998 with stage 3 ovarian cancer and although she had a recurrence in 2005 she was disease free then. I had reached out to her to talk about getting involved with the Kaleidoscope of Hope Foundation. The Foundation raises funds for research and awareness of ovarian cancer and was founded in 2000 by Lois, Gail MacNeil and Patty Stewart-Busso. I went to the 2007 Awards Gala and later joined the Board. When I recurred in 2008 Lois supported my decision to have surgery first  and insisted that I remain on the Board through treatment.

 2009 KOH Awards Gala (Lois, Dee, Carole)

Lois was a driving force in NJ and even in Washington DC as she raised awareness and funds for an early detection test for ovarian cancer and ultimately a cure for the disease. She also gave me hope that I could live a long life. We left the KOH Board around the same time ( I rejoined the Board earlier this year) and we stayed in touch via e-mail and Facebook.

Sadly those occasional messages have come to an end. Lois passed away yesterday, November 29, 2016.

Over 18 years as an Ovarian Cancer Survivor.  She will be missed by her community of Teal Sisters and the entire ovarian cancer advocacy community. 

Rest in Peace Lois.

Dee
Every Day is a Blessing!


Friday, November 18, 2016

#HAWMC Day 17 - A Throwback Thursday Post




It was very hard to choose one post from 9 years of blogging but I knew wanted to find one that spoke about symptoms and the impact ovarian cancer has in the world. So I chose the following from May 2013:

Every Women is at Risk- World Ovarian Cancer Awareness Day !

This is truly amazing. It is a first for ovarian cancer.
Twenty seven organizations and seventeen countries around the world are celebrating World Ovarian Cancer Day today. Women in these countries are going to wear teal, the awareness color of ovarian cancer. They will  talk about symptoms and risk factors and raise awareness. Since I was diagnosed I have often thought that there are many wonderful organizations raising awareness and funds for research but we need one voice. I am so happy to see that is happening today.

Why is this day necessary?
Ovarian Cancer has the lowest survival rate of any gynecologic cancer.
All women are at risk for ovarian cancer.
Many women think that the Pap Test is a screening test for ovarian cancer. It is NOT!
Many women do not know that there are Ovarian Cancer symptoms.
The global diagnosis rate for ovarian cancer is a quarter million women.
Approximately 6500 women are diagnosed with OC in the UK every year.
Approximately 25000 women are diagnosed with OC in the US each year.
Approximately 1400 women are diagnosed with OC in the Australia each year.


What can you do? 
Share these symptoms with other women and if they last more than 2 weeks please see your gynecologist.

Bloating
Eating less
Abdominal pain 
Trouble with your bladder 

For more information:http://ovariancancerday.org/
Hope you learned something new!

Dee
Every Day is a Blessing!

Wednesday, November 9, 2016

Day 9 #HAMWC. What's your ideal day?

This one is easy.

Who would be part of my ideal day?
My husband, daughter , son-in-law, son, daughter-in-law and two grandsons.

Where would we be? 
Two choices for this one.
Close to home in Belmar spending time on the beach at the Jersey shore.
or
Farther from home we would all be together at DisneyWorld probably walking around Epcot or going on the safari ride at Animal Kingdom.

I will cancel meetings and rearrange things to spend time or visit family and friends. I once didn't attend an awards event - I was receiving the Spirit of Hope Award -  because I was moving my daughter and her husband to their new home.


Dee
Every Day is a Blessing!

Tuesday, November 8, 2016

Day 8 #HAWMC Little Engine post

I think I can be the support other women diagnosed with ovarian cancer need.
I think I can spread the word about OC symptoms through this blog.
I think I can make a difference in my small senior community.
I think I can lead others to speak up about their health care experiences.
I think I can teach others to advocate for themselves.
I think I can continue to post during the #HAWMC.
I think I can show others that the voices of patients are important in all stages of research.

I know I can make a difference through the work Christina and I  do in the #gyncsm community.
I know I can continue to exercise to help reduce my risk of recurrence.
I know I can make a difference by attending medical conferences.
I know I can get a few more agility titles with my dog. 


Dee
Every Day is a Blessing!

Sunday, November 6, 2016

Day 6 #HAWMC My Super Power

What an interesting prompt.

Super power?  My first thought was flying, super strength, super speed and x-ray vision.

But on second thought I'd rather my super power be the ability to help people overcome their fears and enjoy the life they have.

I know fear stops us from doing the things we might want or need to do.
Visit family that lives on the other coast when you are afraid of flying.
Enjoy life and plan ahead when you fear a cancer recurrence.
Gather the information and having your ovaries and fallopian tubes removed when you fear of a diagnosis of ovarian cancer because you have a BRCA mutation.
Leave a relationship that is harmful to you physically and emotionally because you fear the unknown and would need to be alone.
Stand up for what you believe is right because you fear that people won't like you.
Go back to school to get your degree because you fear having to study and take tests.

These are just a few examples of my super power at work.

Dee
Every Day is a Blessing!

Saturday, November 5, 2016

Day 5 #HAWMC My Go To Platform - Twitter

Well I had high hopes that I would write each day for the Health Activist Writer's Month Challenge but it seems I already missed two days. So I will just have to jump in when I have the time to post. Here goes with today's challenge of writing about my Go To Platform.

I started blogging as Women of Teal back in 2007, joined Twitter in 2011, joined Instagram in 2012 and lastly took Women of Teal to Facebook in 2015.

So which is my Go To platform. 
Twitter

I can honestly say I have not only enjoyed it but I have made the most connections on that platform. I have  learned so much from other survivors, researchers , physicians and organizations and yes even the federal government. (I recommend you follow @TheNCI . ) I have asked questions and gotten almost instantaneous answers. I have shared losses which are sadly very common in the ovarian cancer world and I have gotten words of support. I have cheered on others in their journey with ovarian cancer and chatted with my #bcsm sisters about BRCA mutations and metastatic disease. Is it a challenge to write in 140 characters? You bet. So you have to make every word count. My best twitter experience is when @btrfly12 and I co-moderate the #gyncsm chat. (You should join us 2nd Wed of the month 9pm ET.)

So if you aren't on Twitter give it a try. Look for me. I'm @womenofteal. And be sure to say Hi!

Dee
Every Day is a Blessing! 

Wednesday, November 2, 2016

Day 2 of #HAWMC! How I Write.

When I was first diagnosed I hadn't run across very many women who had ovarian cancer. So in 2007 I decided to share my experience and information I learned about the disease with other women through this blog. I also shared awareness events in my state (NJ) so that women could make a connection with others and get involved in a local organization. Who knew almost 9 years later I would still be writing.

What I write about now includes events and information about organizations in NJ but there is a greater concentration on research news.  I make a effort to describe research results in lay terms so the average patient and their caregivers can understand drugs and treatments in the pipeline.

I used to feel guilty if I didn't write once a week on this blog. Now I write when there is information to share or I have an experience that other women might find of interest or value.

It usually takes me a a minimum of 2 days to write a blog  post. I write a draft which in many cases includes lots of blank spaces. Many times I'm not able to recall the correct words for things. All this thanks to chemobrain from 14 chemo treatments. The next day I go back and read and complete the post.

So this writing every day all at once is a bit different for me.

Dee
Every Day is a Blessing! 


Tuesday, November 1, 2016

Day 1 of #HAWMC - What drives me...

I'm not sure I can actually complete this #WEGOHEALTH challenge but I will give it a shot again this year. 

What drives me...

When I was first diagnosed with ovarian cancer in 2005 I had not met another women with the disease. But I did know the story of Gilda Randner's diagnosis and that is not how I wanted my story to go. So I began this blog in 2007 to reach other women diagnosed with ovarian cancer so they didn't feel alone, to provide evidence based research and awareness of the disease.

Did you know that there is no screening test for ovarian cancer?Nope. That Pap test you go for is for cervical cancer.

I bet you heard that ovarian cancer is silent. Nope. Ovarian cancer can produce symptoms.
Bloating
Frequent urination
Pain in the pelvis or abdomen
Feeling full quickly

See if these occur for more than 2 weeks without stopping see your doctor. As one gyn onc I heard at a survivors meeting say - Ask your doctor to prove you don't have ovarian cancer.

I bet you thought all ovarian cancers were the same. Nope. There are many different types - epithelial, germ cell, stromal cell and these have subtypes and grades. 

I bet you thought ovarian cancer wasn't linked to any hereditary mutations. Nope. Women who have a BRCA 1 and 2 mutation are at higher risk for ovarian cancer so tell your doctor if you aunt or mother or sister or grandmother on both sides of your family had breast or ovarian cancer.

September is ovarian cancer awareness month but those with the disease try to raise awareness of the disease all year long. So if you see the color TEAL think ovarian cancer.


Dee
Every Day is a Blessing! 




Monday, October 17, 2016

Ovarian Cancer Research News - Fall 2016

I am pleased to share a number of recently released research studies. The list was compiled by Sarah DeFeo of OCRFA. Links to journal articles may be found on the OCRF page describing each study.

A Mayo Clinic research team has found evidence suggesting that premenopausal women who are not at high risk of ovarian cancer should not have their ovaries removed for the purpose of cancer prevention. 
Dee's Note: Removal of the ovaries should only be considered if you have a BRCA mutation. The side effects from ovary removal may lead to other health issues - cardiac, bone etc.

According to research published this month in the New England Journal of Medicine, the PARP inhibitor niraparib improves progression free survival in recurrent, platinum-sensitive women both with and without germline BRCA mutations.
 Dee's Note: This Parp inhibitor showed significant improved progression-free survival versus placebo for women with and without BRCA mutations or homologous recombination deficiency.

A new analysis published in the American Journal of Obstetrics and Gynecology determined the impact of gynecologic surgeon volumes on patient outcomes.
Dee's Note: Previous studies showed similar results. Low volume surgeon had higher mortality rates. Have your surgery done by a gynecologic oncologist who has completed many of these surgeries. 
 

New OCRFA-funded research demonstrates how a drug already in clinical trials could be used to boost anti-tumor immunity and cause T-cells to target the cancer directly while minimizing side effects.
Dee's Notes: PDL-1 and PD-1 work to prevent T-cells from fighting cancer cells. It was found that BET ( bromodomain and extraterminal domain)inhibitors can stop BRD4 (bromodomain-containing protein 4) which contributes to PDL-1 expression. 

The European Society of Medical Oncology published a study last week that indicated the reasons for a decrease in deaths from ovarian cancer in both young women and post-menopausal women. 
 Dee's Notes: I am confused about how the deaths from ovarian cancer can decrease if the number of women diagnosed has stayed constant. Women diagnosed with ovarian cancer are no longer on oral contraceptives. Anyone have insight into this issue please leave a comment below. 

While primary cytoreductive surgery followed by chemotherapy is the standard of care for newly diagnosed women with advanced ovarian cancer, newly issued practice guidelines suggest that some patients may benefit more from first-line neoadjuvant chemotherapy (NACT) and followed by surgery.
 Dee's Notes: Newly diagnosed women with stage IIIC or IV epithelial ovarian cancer who may only achieve suboptimal debulking ( less than 1 cm) should receive chemotherapy first.


A study published recently in JAMA Oncology showed that CA-125 tests and CT scans are routinely used in ovarian cancer surveillance testing, even though evidence has shown there is no clinical benefit to using these tests
 Dee's Notes: This prospective study showed no benefit to using CA-125 / CT scans as surveillance for OC. "During a 12-month period, there was a mean of 4.6 CA-125 tests and 1.7 CT scans performed per patient" 

The Biennial Ovarian Cancer Research Symposium is presented by the Rivkin Center for Ovarian Cancer and the American Association for Cancer Research. 
 Dee's Note: Good Summary of presentations on OC screening, treatment, microenvironments and disease mechanisms. 


Dee
Every Day is a Blessing!  

Friday, October 7, 2016

September - A Busy Awareness Month

Earlier today I realized that almost 30 days have gone by without posting to this blog. My best laid plans to keep up with posting just did not work out.

September is Ovarian Cancer Awareness Month. This year more so than in the past I spent a lot of time on Facebook and Twitter posting information about awareness events and information on ovarian cancer. I posted for myself as Women of Teal (@womenofteal) and for the Kaleidoscope of Hope Ovarian Cancer Foundation (KOH) (@koh_nj) .

In addition to the work I did at home on the computer I also attended two KOH events as well as an event that my friends, the Lopez family, held for their foundation, the Janice Lopez Ovarian Cancer Foundation.

On Sept 18th I manned the Survivors Table at KOH's Gail MacNeil Morristown Walk. There were special survivor t-shirts, beads and notebooks for survivors. I was so happy to meet eight women who had been diagnosed with ovarian cancer. I created a large kaleidoscope image that the women could sign with their date of diagnosis. Eleven women who had been diagnosed with ovarian cancer signed the image.

I also got a pleasant surprise. I was awarded the KOH Spirit of Courage Award.
Some of the many walkers at the Gail MacNeil Morristown KOH Walk

Lynn Franklin , President of KOH awarded me the Spirit of Hope Award. 

The next Saturday I attended the Avon-by-the-Sea KOH walk, once again manning the Survivor Table. The day was rainy but that did not stop over 700 walkers from walking the boardwalk at the Jersey shore to help raise funds for ovarian cancer research.

Walkers on the beach waiting for the walk to start.

Bagpipes on the Boardwalk.
I was so happy to add more names to the kaleidoscope image.



Then on Sunday, September 25th, I attended the Janice Lopez Ovarian Cancer Foundation 3rd Concert for the Cure. It was an amazing afternoon listening to the Encore Orchestra of NJ and some amazing Broadway vocalists. Once again I was blessed to be honored by the Foundation and received their first Teal Champion Award.





What a month for me!  I appreciate the awards and being able to share some fun times with my husband and friends. Yet there were times during this month that I felt sad. Sad because so many women who were my friends and advocacy colleagues were not with me at these events as they had been in the past.  I missed Carole, Janice, Gail, Pam and others. It is in their memory that the advocacy work that I do takes on a special meaning for me.


Dee
Every Day is a Blessing!




Sunday, September 11, 2016

Book Review: Making Sense of Medicine

During the 9 years I have written this blog I have read and reviewed a number of books by cancer patients, their caregivers and their physicians.  The focus of these books has always been cancer. During that time period I have also promoted the need for more patient-centered care. My definition of patient centered care is treating the person not the disease based on the individual patient's needs and situation.

When Dr. Zachary Berger, ( @ZackBergerMDPhD), a physician at Johns Hopkins, who I follow on Twitter, tweeted that he had published a new book,  Making Sense of Medicine-  Bridging the Gap Between Doctor Guidelines and Patient Preferences I was interested in reading it.  I wondered how he would describe the importance of patient-centered care from his, a physician's, perspective.

His book contains chapters on various common chronic diseases - High Blood Pressure, Arthritis and Diabetes. Within each chapter is the story of his patient's experience with illness and his interactions with those patients. Some of those interactions were funny and after reading some I was angry at the situation. I could identify with some of the stories as patients with multiple diseases dealt with the system. Although there is not a separate section for or about those living with cancer there are chapters that are useful to the cancer patient and survivor such as Depression, Surgery, Guidelines and Is Half of all Research Wrong?.

His chapter on Poverty : Making Decisions, Our Health System - And You in the Middle is very thought provoking and points out the health care disparities in the United States. Berger writes " we don't get the right treatments to exactly the right person just when and where they need it ." He goes on to say "And giving too much care is a subset of this problem."

As I read the book I underlined many phrases and paragraphs.

When I read "...The biomedical assumption that knowing what is broken will tell us how to fix it is not always justified". I thought of a friend who turned down a spinal tap to see if there was cancer in her brain because she had decided to stop treatment.

When speaking of guidelines Berger says " there is no perfect evidence that matters the same way to everyone, everywhere". That is why asking patients their needs and wants is so important.This section is the only one in which I would add that ASCO (American Society of Clinical Oncology) is including patients on all their Clinical Guideline Panels and they are having a voice as those guidelines are developed.

Reading "There will always be such situations in which the personal question outpaces the available scientific evidence." I thought of cancer patients with multiple recurrences / metastatic disease with different treatment options available to them and being in uncharted waters.

In Revisiting the Biomedical Paradigm he writes"Identifying conditions (diseases) through signs , symptoms, following them up with diagnosis and pursuing effective treatment is not the only effective path to help . " He recommends a more sensible approach "science of the individual". Yes!

I could go on but I would prefer that you read the book and find the sections that speak to you and an individual patient, doctor or caregiver .

If you are a patient, caregiver or health care provider I highly recommend Making Sense of Medicine. It will make all of you think. Patients, I hope it empowers you to ask questions and become a partner in your health care.

I appreciate the opportunity to read and review this book.

Dee
Every Day is a Blessing! 


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:
NCCN
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. 
CBC
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)."
54

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"


Dee 
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.

Dee
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 http://www.jlocf.org/

~~~~

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
 DOGS WELCOME
 
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 : http://kohnj.org/walkathon.html

~~~~~
 
National Ovarian Cancer Coalition-NJ Chapter Events:

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


 Friday, Sept. 9, 2016 
Music

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





Registration 
http://walkforovariancancer.com/ 

~~~~ 
 
Teal Tea Foundation 

Sunday Sept. 18, 2016 

Color Me Teal Run/Walk 
Registration: https://www.eventbrite.com/e/color-me-teal-runwalk-tickets-26665500229

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. 

Dee
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.


Dee
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.

Dee
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. 

Dee
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.

Dee
Every Day is a Blessing!

Additional sources of information: 
 

Monday, June 13, 2016

The Days of ASCO- Liquid Biopsies

While planning which sessions I would attend I ran across a joint AACR and ASCO session : The Next Frontier of Genomics and Clinical Trials.

One speaker was talking about big data and clinical trials. Accumulating large numbers of patient data - disease information / genetics/  treatment and response in one place will allow researchers to recognize patterns and best practices and that is a good thing.

But the session I couldn't wait to hear was Potential of Liquid Biopsies in Precision Medicine presentation by Dr Luis Diaz. I had often wondered if there was enough circulating tumor DNA (ctDNA) in the blood to measure accurately. And I wondered if you could find ctDNA from ovarian cancer tumors and maybe be able to detect ovarian cancer or a recurrence quicker.

What is a liquid biopsy? When a cancer cell dies it can shed DNA into the blood. This cell-free or circulating tumor DNA can be removed from the plasma and the genetic makeup can be studied. These DNA mutated fragments can be compared to normal alleles.

Why do a liquid biopsy? It is less invasive than a tissue biopsy. It may cost less. It may be used to follow response to treatment or signal a recurrence quicker and it can track genetic changes in the cancer. 

So on Saturday afternoon, I sat in a large standing room only session to listen to Dr Diaz. During his talk Dr Diaz mentioned a pancreatic cancer study where  ctDNA spiked along with the tumor marker CA19-9 showing that liquid biopsy could be used to track a recurrence. Another study (not sure of which cancer ) showed that a rising ctDNA signaled a recurrence which was confirmed by a CT scan.  I was tweeting from the meeting and wanted to be sure I heard correctly when Dr Diaz mentioned that liquid biopsy could only be used for somatic mutations, so I tweeted.
And got these responses 




There were also other presentations/ posters on the use of liquid biopsy.

During a Tumor Biology presentation, Dr. P. Mack shared results of a study of blood samples from over 5,000 patients with 50 different tumor types (39% lung, 14% breast , 10% colon cancers) . Some of the samples were compared to patient tumor samples. The ctDNA test found mutations in 83% of the samples. And overall 87% of the ctDNA results matched the tumor samples. You may read more about this study here.

Another abstract by Dr Tie showed that the detection of ctDNA in patients with stage II colon cancer who had undergone surgery provided direct evidence of residual disease.

Circulating cell-free DNA : The future of personalized medicine in ovarian cancer management was presented as a poster. The poster reported on a study of ctDNA in the blood of 14 women with ovarian cancer. The tumor tissue of the women underwent next-generation sequencing. The researchers found that ctDNA detected more mutations than what was found in the solid tumors. (poster abstract.).


A number of companies (including Guardant Health which was used in the Mack study) have introduced liquid biopsy equipment.

I look forward to the application of ct DNA in future ovarian cancer research/ treatment.

Dee
Every Day is a Blessing!

Sunday, June 12, 2016

The Days of ASCO: Other Gyn Cancers

This post will cover research I heard that related to endometrial and cervical cancers.

Divide and Conquer

Goodfellow- Mismatch repair mechanisms (MMR) are frequent in endometrial cancers.


The use of immune checkpoint blockade holds promise for endometrial cancers with MMR.

Surviving the Cure

McCormack - This presentation was on the late effects of radiotherapy (RT)  for gyn cancers.

 A Mayo Clinic study showed 17% of women had lower limb lymphedema after RT.
Radiotherapy can also impacted sexual function.


Oral Abstract 
Frenel  Discussed the use of pembrolizumab ( anti-PD1) in 24  women with advanced cervical cancer in a phase 1 trial - KEYNOTE trial (5515) . Pembrolizumab was well tolerated and had promising anti-tumor activity.

Soliman Discussed everolumis, letrozole, and metformin in recurrent/advanced endometrial cancer. (5506)  the study showed that 67% of the women treated with the combined therapy showed a clinical benefit. There was no difference in clinical benefit for those with the KRAS mutation. Side effects included anemia , diarrhea and fatigue.

Poster Session
5518 Clinically applicable molecular-based classification for endometrial cancers.
MMR,  immunohistochemistry (IHC), mutation status of the POLE exonuclease domain, and p53 IHC were  evaluated on a cohort of 456 endometrial  hysterectomy specimens. POLE had the best prognosis while the P53 had the worst prognosis. The "molecular classification tool can be used from time of first diagnosis and will: provide consistent categorization of tumors, improve risk stratification, identify women who may have Lynch syndrome, stratify clinical trials, and we believe ultimately improve outcomes for women with EC."

5520 Phase II study of anastrozole in recurrent estrogen (ER) / progesterone (PR) positive endometrial cancer: The PARAGON trial—ANZGOG 0903 
Women in this study showed improved quality of life ( emotional and physical function) when taking anatrozole.
The SGO shared these videos of research presented at #ASCO16 on endometrial and cervical cancers. Speaker is Dr Shannon Westin, MD Anderson and #gyncsm health care moderator. 


endometrial cancer



cervical cancer



Next post will be on liquid biopsies. 

Dee
Every Day is a Blessing!




Saturday, June 11, 2016

The Days of ASCO 16: Ovarian Cancer Research

This post will concentrate on information I learned during the gynecologic cancer sessions which focused on ovarian cancer. A future blog post will discuss research presented on other gynecologic cancers.

Intraperitoneal Chemotherapy for Ovarian Cancer: Trials and Tribulations
Presenters: Drs. Walker, Gourley, Mackay 
A discussion of GOG252 ( phase III trial) that compared IP and IV chemotherapy. All arms received Bevacizumab.
  • Arm 1: intravenous carboplatin AUC (area under the curve) 6/intravenous weekly paclitaxel at 80 mg/m2
  • Arm 2: intraperitoneal carboplatin AUC 6/intravenous weekly paclitaxel at 80 mg/m2
  • Arm 3: intravenous paclitaxel at 135 mg/m2 on day 1/intraperitoneal cisplatin at 75 mg/m2 on day 2/intraperitoneal paclitaxel at 60 mg/m2 on day 8. (Control)
This ASCO POST article  on this session also discusses the trial.

Walker  
Progession Free Survival (PFS) for all arms was similar
IP cisplatin arm had increased blood pressure with Bevacizumab
16% of the IP patients moved into the IV arm which may have influenced results
Neurotoxicity side effect in all arms were equal. All are lower than in GOG 172.
Questions asked regarding the  GOG 252 results:
    Did the dose dense paclitaxel in control make the control arm better than the control arms in the  other studies? 
    Did the addition of Bevacizumab negate the previous positive IP results? 
    Did the surveillance with CT every 6 months decrease PFS results?

Gourley
Other studies ( GOG 104,114,172) showed longer PFS using IP compared to  IV 
The subgroup of BRCA1/2 patients could benefit from IP

 Mackay
"There are still unresolved issues" regarding the use of IP chem
No evidence for combining IP/IV with Bevacizumab
No data so therefore no role of HIPEC ( hyperthermic interperitoneal chemotherapy) to treat ovarian cancer outside of clinical trial. 
Need to understand the microenvironment and biology of  OC
Would use of IP chemotherapy benefit subgroups of patients based on histologic or molecular profiles or platinum sensitivity? 

Divide and Conquer: Epithelial OC Beyond BRCA
Kristeleit, Kohn , Goodfellow 

This session discussed genes and pathways that influence the development of ovarian cancer. In addition to germline BRCA 1/2  mutations you can also find somatic BRCA 1/2 mutations, BRCA1 methylation, EMSY amplification, TP53, mutation, tumour suppressors RB1, NF1, RAD51B and PTEN ( which can lead to chemo resistance) and overexpression of MDR1.



Some clinical trials are also looking at Wee1 inhibition ( phase II), Hypoxia, combining parp inhibitors and immunotherapy, and PD1, PDL1 immunotherapy. 

Symptom Management for Patients with Gynecologic Cancers 
Le, McCormack , Mayer  
Menopause
Dr Le spoke about the impact of menopause symptoms ( hot flashes, genitourinary ) after surgery. She recommended asking patients about what menopausal symptoms they were experiencing, assess the risk of hormone therapy and refer to  gynecologist/PCP for hormonal or non-hormonal treatment. 

Survivorship Care Plans
Dr Mayer presented background information about the quality of life issues of women diagnosed with ovarian cancer. This slide shows the informational needs of ovarian cancer survivors ( Papadakos, 2012). Younger women had greater needs than older women. 


She concluded that women with gynecologic cancers can experience a number of long terms and late side effects, they have unmet needs especially fear of recurrence ,  patient reported outcomes can help identify the issues and survivorship care plans can help address those needs. 

Oral Abstracts- Ovarian Cancer

5501- Overall survival (OS) in patients (pts) with platinum-sensitive relapsed serous ovarian cancer (PSR SOC) receiving olaparib maintenance monotherapy
Patients receiving maintenance olaparib after responding to platinum therapy had an overall survival advantage. Patients with a BRCA mutation and platinum sensitive relapsed serous ovarian cancer showed a significant progression free survival benefit. Germline and somatic BRCA mutation gave the same results. 

 

5502 Hormonal maintenance therapy for women with low grade serous carcinoma of the ovary or peritoneum Low grade ovarian cancer is more platinum resistant than high grade ovarian cancer. Women with stage II-IV low grade ovarian cancer who received hormonal maintenance chemotherapy following primary treatment had a statistically significant improvement in progression free survival compared with women who were under surveillance . 

 

LBA5503 OV21/PETROC: A randomized Gynecologic Cancer Intergroup (GCIG) phase II study of intraperitoneal (IP) versus intravenous (IV) chemotherapy following neoadjuvant chemotherapy and optimal debulking surgery in epithelial ovarian cancer (EOC)After 3-4 courses of IV platinum chemotherapy followed by optimal debulking surgery women were optimized to 1) IV carbo/taxol , 2) IP cisplatin / IV taxol or 3) IV taxol/ IP carboplatinum.  The IP carboplatin based regimen, post neoadjuvant chemotherapy and debulking surgery, was tolerated and a lower number of women showed progression at 9 months compared to IV therapy. 

 

5504 Multicenter phase II study of intraperitoneal carboplatin plus intravenous dose-dense paclitaxel in patients with suboptimally debulked epithelial ovarian or primary peritoneal carcinoma Prospective study of stage II-IV OC. Chemotherapy with dose dense Placitaxel / Cisplatin  is safe and effective for suboptimal residual ovarian patients.

 

5505 The MITO8 phase III international multicenter randomized study testing the effect on survival of prolonging platinum-free interval (PFI) in patients with ovarian cancer (OC) recurring between 6 and 12 months after previous platinum-based chemotherapy: A collaboration of MITO, MANGO, AGO, BGOG, ENGOT, and GCIG  This study showed that  prolonging the platinum-free interval by using a non platinum based chemotherapy  does not improve and even worsens efficacy outcomes in patients with partially platinum sensitive recurrent ovarian cancer . 

 

5507 Performance characteristics and stage distribution of invasive epithelial ovarian/tubal/peritoneal cancers in UKCTOCS This study was first discussed at ASCO 2015 and this abstract presented a further analysis. Patients were randomized to either the Multi modal (MM) Risk of Ovarian Cancer Algorithm (ROCA) arm or ultrasound (USS)  for screening. Sensitivity of the MM was 86% with 4 operations per invasive cancer detected. Sensitivity of the USS was 63 % with 17 operations per invasive cancer detected.

 

 5508 Baseline quality of life (QOL) as a predictor of stopping chemotherapy early, and of overall survival, in platinum-resistant/refractory ovarian cancer (PRROC): The GCIG symptom benefit study (SBS) This Symptom Benefit study showed that Global Health status, Physical function,  Role Function and Abdominal/ GI symptoms were independent predictors for overall survival were significantly associated with stopping chemotherapy early. The worse symptoms the shorter survival. Assessment could help identify patients who may not benefit from palliative chemotherapy. 


Clinical Sciences Session: Leveraging the Immuno-molecular Landscape of Gynecologic Cancers - OVARIAN CANCER

5510 Kurian This study included over 95,000 women with ovarian cancer were tested using the Myriad 25 gene hereditary panel test . Personal histories were also taken. 

Most of the women had BRCA1/2 mutations.  ATM ( a mutation associated with breast cancer)  was seen for the first time . 

5511 Tanyi Mesothelin is a tumor associated antigen in ovarian cancer. This immunotherapy study was Phase 1 and included 6 women with recurrence ovarian cancer . Each women received an intravenous infusion of autologous T cells transduced to express a chimeric antigen receptor directed against mesothelin (CART-meso). The infusion was found to be safe. 

 

Education Session : Neoadjuvant Chemotherapy : Location , Location Location                    Leary and Chi  

There is a risk of progression while on neoadjuvant chemotherapy (NACT). There may also be a risk of driving chemo resistance on NACT. Previous studies showed improved survival but there was no quality control of the surgical aspect of the trials. How much disease remained after surgery? Ultimately it is the clinicians decision whether or not to use neoadjuvant chemotherapy. 

Here is an SGO video on ovarian cancer research at #ASCO16 on ovarian cancer. Presenter is Dr Shannon Westin, MD Anderson.



Dee 
Every Day is a Blessing!