Monday, December 30, 2019

12 Years a Blogger

This post will be my last one of 2019 and it marks my twelfth year writing this blog. This blog has opened doors to so many other advocacy activities and I am grateful for those opportunities.

I had some wonderful advocacy opportunities this year.

I continued to blog for Globeathon. My latest post was advice on Holidays Past .

I have become more active as an ASCO member, too. In June, I spoke with Dr Elizabeth Dickson at the ASCO Annual Meeting in Chicago on the needs of gynecologic cancer patients ( And in late September, I traveled with other ASCO members to ask Congress for support of three bills that could impact the lives of people diagnosed with cancer ( I also became the patient representive on ASCO's  Clinical Practice Guidelines Committee and the Social Media Workgroup.

I continue to  serve on the Scientific Review Board at Rutgers Cancer Center of New Jersey and am also a patient advocate on the Community Advisory Council. In September, I presented my story as an ovarian cancer survivor at the Gynecologic Cancer Awareness event at RCINJ as well as to a class of social work students at Rutgers University. 

Working with other Twitter Cancer Community leaders and social media experts,  I helped author Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities 
JCO Clinical Informatics

I also continued to co-moderate the #gyncsm Community on Twitter chats with Christina Lizaso and covered some really important topics such as  Maintenance therapies, PARP inhibitors and the origination of high grade serous ovarian cancer. 

I look forward to seeing what 2020 will bring to my advocacy, this blog and the future of ovarian cancer research. 

Every Day is a Blessing!

Monday, December 23, 2019

Holiday Wishes

I want to wish my followers and friends the Happiests of Holidays. Whether you celebrate Christmas, Hannukah or Kwanzaa may this season be one of Peace, Love and Light.

Every Day is a Blessing! 


Saturday, December 14, 2019

A Virtual Gift of Resources

It is hard to believe that it has been a month since I last posted. Life can certainly keep one busy.

As I prepare for the holidays, I thought about doing something for my readers.

Here is my virtual gift to you - my choices of the best, most useful, reliable and sound sources of information and support for women diagnosed with cancer.

 Dee's Best Resources List

Best General Cancer Information Sites:
NCI Cancer Types
American Cancer Society

Best Ovarian Cancer Information Sites:
Foundation for Women's Cancer
NCI Ovarian cancer site
American Cancer Society

Best Support Platforms:
Online Membership required
Inspire (OCRA)
Smart Patients

Cancer Support Community
Survivorship Toolkit 
Support Connection

Best Hereditary Cancer Information
FORCE (Includes Peer support)
National Society of Genetic Counselors

Treatment Guidelines and Information
CA-125 Information

Wednesday, November 13, 2019

All About PARPS

Over the past few weeks many questions about PARP inhibitor use in the treatment ( front line, recurrent and maintenance) therapies for Ovarian Cancer were asked in many of the  private online groups that I participate in.  I can understand the questions and confusion because of the different PARPs available for women diagnosed with ovarian cancer - Olaparib ( Lynparza) , Niraparib ( Zejula) and Rucaparib (Rubraca) and their uses. 

In this blog post I will describe what a PARP inhibitor is, and provide all the FDA approval information and a few articles that compare the different types.

Let's start with this definition provided by the NCI.

PARP inhibitor
"A substance that blocks an enzyme in cells called PARP. PARP helps repair DNA when it becomes damaged. DNA damage may be caused by many things, including exposure to UV light, radiation, certain anticancer drugs, or other substances in the environment. In cancer treatment, blocking PARP may help keep cancer cells from repairing their damaged DNA, causing them to die. PARP inhibitors are a type of targeted therapy. Also called poly (ADP-ribose) polymerase inhibitor."

I'm more a visual person so here is a video by Dana Farber that you might find helpful.

Now lets look at each PARP and when , who and why it was approved. The FDA pages include references to the clinical trials that the approval was based on. Remember there are still clinical trials enrolling that may use a PARP in combination with other treatments. 


FDA Approval Summary: Olaparib Monotherapy in Patients with Deleterious Germline BRCA-Mutated Advanced Ovarian Cancer Treated with Three or More Lines of Chemotherapy.

On Aug. 17, 2017, the U.S. Food and Drug Administration granted regular approval to olaparib tablets (Lynparza, AstraZeneca) for the maintenance treatment of adult patients with recurrent epithelial ovarian, fallopian tube, or primary peritoneal cancer, who are in a complete or partial response to platinum-based chemotherapy.

Prescribing info


On March 27, 2017 , the U.S. Food and Drug Administration approved niraparib (ZEJULA, Tesaro, Inc.), a poly ADP-ribose polymerase (PARP) inhibitor, for the maintenance treatment of adult patients with recurrent epithelial ovarian, fallopian tube, or primary peritoneal cancer who are in complete or partial response to platinum-based chemotherapy.

Here is additional information from an article in the AACR Journal

On October 23, 2019,the Food and Drug Administration approved niraparib (ZEJULA, Tesaro, Inc.) for patients with advanced ovarian, fallopian tube, or primary peritoneal cancer treated with three or more prior chemotherapy regimens and whose cancer is associated with homologous recombination deficiency (HRD)-positive status. HRD is defined by either a deleterious or suspected deleterious BRCA mutation, or genomic instability in patients with disease progression greater than six months after response to the last platinum-based chemotherapy.

Rucaparib: Rubraca

On December 19, 2016, the U.S. Food and Drug Administration granted accelerated approval to rucaparib (RUBRACA, Clovis Oncology Inc.) for treatment of patients with deleterious BRCA mutation (germline and/or somatic) associated advanced ovarian cancer who have been treated with two or more chemotherapies.

On April 6, 2018, the Food and Drug Administration approved rucaparib (Rubraca®, Clovis Oncology Inc.), a poly ADP-ribose polymerase (PARP) inhibitor, for the maintenance treatment of recurrent epithelial ovarian, fallopian tube, or primary peritoneal cancer who are in a complete or partial response to platinum-based chemotherapy.

This NCI  blog post PARP Inhibitors as Show Promis as Initial Treatment for Ovarian Cancer pulls together the use of PARPs for initial treatment.

While this 30 minute webinar is geared toward medical professionals, it provides an overview of all three PARP inhibitors and their use.

If you have other resources you would like to share on PARP inhibitors please leave a link the the comment section and I will update this page.

Every Day is a Blessing! 

Tuesday, October 15, 2019

A Multitude of Feelings

September came to an end at here we are at almost the midpoint of October. I had been thinking about this post for quite a long time now but was unsure of how to even begin.

In a book I was reading by Elizabeth Berg one of the characters stated she had a multitude of feelings and I thought to myself that is just what I need to call my post about September.

September brings a multitude of feelings to me. I love the Fall so the crisp cooler air is wonderful.  The September of 2005 I was just getting my head around being diagnosed with stage 3b ovarian cancer. I was in 2nd / 3rd cycle of chemotherapy and I remember the windows being open and hearing kids outside playing while I rested.

September also brings out the teal ribbons and walks and other events to raise awareness of ovarian cancer. I have seen an increase in the number of buildings that turn teal so many times during September and that makes me happy.

 At one event I to took part in I told a story about how the support group at my cancer center started and I felt proud to be a part of exactly the type of support other women diagnosed with ovarian cancer need. I was so happy to talk about my gyn oncs who spearheaded my advocacy work by pointing me toward the LiveSTRONG organization.  But during the talk I also mentioned my sister who died from breast cancer in 1995. Right as I said those words I knew I was tearing up.  I had to stop take a big deep breath and continue. Yes,  all these years later I still miss picking up the phone and talking to her.

At the final KOH walk, while walking along the Jersey shore boardwalk I was overwhelmed by the fact that here it was 2019 and I was alive. I had beat the odds and in the 35% of women diagnosed with late stage ovarian cancer who lived 5 years. And I felt grateful for my family and friends and especially my "teal sisters"  who walk this cancer journey with me. They understand how years later I can still be anxious and even scared when I need bloodwork or have a doctor visit. Sure I deal with neuropathy , digestive issues and chemo brain but gosh darn it I am still here!

I was glad going into the last event a fundraiser to support research in Ovarian Cancer at my cancer center. This one was run by my friends at Graceful Hope Foundation. Seeing the support and old friends was wonderful. But there is always that time during the dinner when we have to remember those women who died due to ovarian cancer . And they mentioned Dawn. And it hit me again I shook my head up and down and teared up as I thought we lost yet another wonderful mother , sister and friend . It is sad to think back to all the women brought together by this disease who were my friends -  Gail, Lois, Patty, Sharon, Pam, Rita Kay, Carole, Janice, Corinne, Linda Ellen, Jayne and many more.

Even after so many years I experience a multitude of feelings in September.

Every Day is a Blessing!

Tuesday, October 1, 2019

ASCO Advocacy Summit

I am a patient advocate member of ASCO and last week I joined oncologists and members of ASCO in Washington, DC as part of the ASCO Advocacy Summit. We had training  sessions on Wednesday and on Thursday we visited our Senators and members of the House of Representatives.
ASCO On the Hill.

I was paired with Dr Charles Miller from Hawaii so we visited the offices of both NJ and Hawaii legislators.

Visiting with Congressman Case (Hawaii)
The bills we asked our legislators to support:
HR 913 Clinical Treatment Act - We stressed the importance of participation by Medicaid patients in clinical trials and the stumbling blocks to participation they currently experience. Meidcaid insures one-fifth of the US population. Yet only 12 states currently allow Medicaid coverage of clinical trial routine care. In those states that cover clinical trials there has been a minimal effect on overall care costs. We asked that patients on Medicaid receive coverage for routine care when enrolled in a clinical trial.

HR 3107  Improving Senior Timely Access to Care Act - Seniors on Medicare Advantage plans are  experiencing delays in  medically necessary testing and treatment due to slow prior authorization policies. Denials are sent without explanations of the determination. We asked that a uniform e- authorization be created for Seniors on these plans and that an explanation of denial be provided so that timely access to care can take place.

HR 2279 / S 2546 Safe Step Act -  Step therapy protocols requires patients to try and fail medications suggested by the payer before the medication prescribed by the doctor can be used Allowing this process in cancer care would delay access to the best treatment for cancer patients and also increase side effects and reduce quality of life. I was happy to learn that Rep Bonnie Watson Coleman (NJ)  has already co-sponsored the House Bill. 

While I did not speak to Senators Booker, Menendez or Congresswoman Watson Coleman in person their aides were very interested in hearing how these bills would effect the people in New Jersey.

You may not be able to travel to DC to speak to your legislators but if any of these bills are important to you it is easy to reach out to your Senators or Congressmen via e-mail or phone and ask them to support the bills that are important to you.

Thank you ASCO for allowing me to be the voice of cancer patients in NJ.

Every Day is a Blessing! 

Tuesday, September 17, 2019

You Need to Know That...

An estimated 22,530 women will be diagnosed in the U. S. in 2019 
An estimated 13,980 women will die from the disease in 2019. 

There is no screening test for ovarian cancer.

There are symptoms:
Feeling Full quickly, 
Frequent Urination, 
Abdominal/ Pelvic Pain, 

A women's risk of ovarian cancer in the U.S. is 1 in 7. 

The risks to develop ovarian cancer are :
Middle age or older ( half of the women diagnosed are over 63 yrs.)
BRCA mutation or Lynch Syndrome
Eastern European or Ashkenazi Jewish 
Have endometriosis
Never gave birth

Sources: CDC, American Cancer Society , OCRA

I hope you will consider sharing this information and donating to support ovarian cancer research. Thanks! 

Every day is a Blessing!

Wednesday, August 28, 2019

What Will You Do During Ovarian Cancer Awareness Month?

September is right around the corner.

Did you know that September is Gyn Cancer Awareness Month in the US? Gynecologic cancers include Ovarian  Cervical, Vaginal, Vulvar, Endometrial/Uterine, Primary Peritoneal and Fallopian Tube cancers.

During September things can get really busy as the number of awareness events increases exponentially.

On Wednesday, September 11th the #gyncsm community, which I co-founded with Christina Lizaso, will celebrate the community's 6th Anniversary. Our topic will be The Breast and Ovarian Cancer Connection. Join us and a representative from the National Society of Genetic Counselors at 9pm Eastern Time.

This year there are a number of awareness and fundraising events in NJ that you can participate in.

I already mentioned the Rutgers Cancer Institute of New Jersey Patient Education event on September 12thin the previous blog post. Check it out here.

There is an Education event sponsored by Summit Medical Group on September 7, 2019. For more info and to register  call 908-277-8889 or sign up online at: 

 As for walks I will be doing the Kaleidoscope of Hope Ovarian Cancer Foundations walk in Bradley Beach on September 28, 2019. They also hold a walk in Morristown ( Sept. 15) and Lyndhurst (Sept. 22) . Check their website ( for research they have supported.
If you would like to donate to the walk please visit

The NJ Chapter of NOCC is joining the Downtown West Orange Alliance for the  Mayor's 5 K and Walk. You can find more information at

The Teal Tea is holding Falling For Teal Fashion Show on Sept 22nd. You may find more info at .

Graceful Hope will be holding their 6th Annual benefit dinner to benefit Rutgers Cancer Institute of NJ in Elizabeth on September 28th. See their Facebook page for more information.

For my Central and South Jersey Friends , the Sandy Rollman Foundation is holding a number of events in September including an Ovarian Cancer Awareness night at the Phillies (9/12) , a General Hospital Philly events (9/14) and OvaryAct Gala (9/20). Please check their website for more information ( ).

Of course you can help raise awareness by hanging teal ribbons. See the Turn the Towns Teal website for how you can help ( ).

If you are holding an event in NJ to raise awareness or funds for research . Please let me know and I will update this post.

Every Day is a Blessing!

Monday, August 12, 2019

Gyn Cancer Education Session - Sept 12, 2019 , NJ

I am honored to have been asked to speak at this patient education program on Gynecologic Cancer Awareness on September 12, 2019. The program is free and dinner is included. See graphic for information on how to complete the required registration.

I hope to see some familiar faces in the crowd.

Every Day is a Blessing!

Sunday, August 11, 2019

Blog Hop Challenge

A cancer advocate I admire, Nancy Stordahl, writes the blog Nancy's Point about breast cancer and loss. Every summer she holds a blog challenge. This year it is a blog hop challenge.

From Linky Tools : "What is a blog hop?
A blog hop is a linky list that is SHARED ON MULTIPLE BLOGS. When several blogs put the same linky list code on their blog, the exact same list appears on each blog. Blog readers see the same list on each blog, and can "HOP" from blog to blog seeing the same list of links to follow: BLOG HOP!"

 I am up for the challenge so here goes:

2019 Blog Hop Challenge Questions
1.  Who are you? If applicable, share anything you want about your cancer (type, stage, when diagnosed, whatever.) Share something about yourself such as where you live, the name of your blog and it’s “mission” (no links here, though, or you might end up in spam), a challenge you have faced or are facing now, or whatever you want.
I am an ovarian cancer survivor and research advocate. I have been writing this blog since 2007 not as frequently as I did in the beginning but I try my best to stay on top of new research developments and share them and other news with my followers. I love dogs and painting.   

2.  Have you ever participated in a blog hop before?
Nope, first timer. 

3.  What’s your favorite sort of blog post to write and/or read – personal story, informational, how to, controversial, political, opinion, rant or other?
I like to read personal stories and informational blogs especially about new research like CAR-T and new screening tests.

4.  Describe yourself in three words. Yes, just three!
organized, kind, resilient 

5.  Name three of your favorite books from your youth (whatever age that means to you.) that had an impact on you.
Cheaper by the Dozen, Call of the Wild, Island of the Blue Dolphins 

6.  What are you reading right now, or what’s on your to-read list for when you have time?
 Memory Man BaldacciI have about 20 books on my to read list on Goodreads.

7.  What’s your favorite dessert of all time?

8.  Tell us about a special pet you have, had, or would like to have. (Never wanted a pet, that’s okay too.)
Amber,  an awesome All-American dog . She loves to jump and do agility.

 9.  What’s something people don’t know about you and might be surprised to learn?
 I wanted to be an astronaut when I was in high school.  

10.  Do you believe healthcare is a privilege or a right?
Most certainly it is a Right.

11.  What’s your favorite thing about blogging and/or reading blogs?
Being able to share information about cancer and the emotions I have experienced as an ovarian cancer survivor.

12.  What’s something you really suck at?
card games

13.  What’s something you’re pretty good at?

14.  How do you escape from cancer (or life in general) worries?
Reading, painting landscapes and animals, spending time with my family and dog.

Thanks for reading!

Every Day is a Blessing

Thursday, August 8, 2019

A Long life and What I Forgot

On July 26, my husband and I drove up to Westchester County to see my dear mother-in-law. She has been in a nursing home a number of years dealing with Alzheimers.  She was a few months shy of her 100th birthday and her health was declining. I used that visit to show her photos of her great-grand sons, to tell her how important she was in my life and how awesome a mom, grandmother and great-grandmother she was. I am so glad I had that opportunity.

The next day in the afternoon we received the call that she had passed away. The next few days were spent getting things in order for her services and funeral. My son and daughter decided to fly in so we made a trip to the Philly airport  to pick them up - they arrived within 5 minutes of each other in the wee hours of the morning last  Wednesday. The next two days were spent in Brooklyn for the services. Spending time with my husband's family (many who flew in from out of state) and old friends was special. I value the years I have been a part of this wonderful family and I was happy to have so many memories when we celebrated her life. While we were busy celebrating her long life many of our friends and family helped to made our life easier. They sent mass card, condolences and food. Others helped take in the mail, put out the garbage and walk the dogs.

Our children flew back to their spouses and kids on August 6th and for the past few days my husband and I have been catching up on sleep and getting back to the things we had put to the side for the past ten days.

When I got back to my advocacy on Twitter, I  saw Christina's post that #gyncsm is almost 6 years old. It was then that  I realized that I had totally forgot my cancerversary.

On July 29th I celebrated 14 years as an ovarian cancer survivor.  I so appreciate my doctors at Rutgers Cancer Institute of New Jersey for making these years possible and I can't thank my family and friends enough for being by my side during treatments and for so many years after.

Deeply grateful,

Every Day is a Blessing

Tuesday, July 9, 2019

#CANCERSM Chat topic 11-Jul-2019: Basics of Biomarker Testing

A number of cancer Twitter communities( #gyncsm, #bcsm, #btsm,#lcsm etc) are joining together for a chat on Biomarkers on Thursday, July 11, 2019 I hope some of my followers will join that chat at 8pm ET. pPathologist Dr. Timothy Craig Allen (@TimAllenMDJD) will be moderating the chat.Learn more by reading the post below by Janet Freeeman-Daily.

#CANCERSM Chat topic 11-Jul-2019: Basics of Biomarker Testing
Until just a few years ago, chemotherapy was often the only option for some cancer patients. In just a
few short years, molecular therapies and immunotherapies have become commonplace as treatments
for cancer patients. But determining whether a particular cancer patient is a candidate for these new,
often very expensive, molecular and immunotherapies requires molecular biomarker testing. For manycancer patients and their families, the role of molecular biomarker testing in their diagnosis is a
unfamiliar and confusing. How is testing performed? How is the test result analyzed? What is involvedin getting helpful answers from biomarker testing? Does liquid biopsy have a role?
Pathologists are specialized doctors responsible for answering these questions. They identify any cancercells in the biopsied specimen, and guide the patient’s biomarker testing. Unfortunately, pathologists donot typically speak with patients, so patients and families–and even some doctors–often do not have aclear understanding of the role of molecular biomarker testing in the diagnosis and treatment ofcancers. Learning more about the basics of biomarker testing can help patients and families cut throughthe hype about biomarker testing, understand the patient’s specific disease more thoroughly, and learn what biomarker test results mean to the patient’s cancer treatment.

Please join moderator and pathologist Dr. Timothy Craig Allen (@TimAllenMDJD) at 8 PM Eastern Time
on Thursday, July 11, 2019, for a discussion about the basics of biomarker testing, a subject potentially
affecting all cancer patients and doctors. We will cover the following topics:
• T1: What is a biomarker and how is it identified?
• T2: What is biomarker testing and what is it used for?
• T3: What treatment options can be identified through biomarker testing?
• T4: What biomarker tests should be run for which types of cancers? What is a liquid
biopsy and when is useful?
• T5: Can and should patients pursue biomarker testing for treatment options if their
doctor does not offer it?

Please remember to include #cancersm in ALL your tweets so the other chat participants can see them.
If you need a refresher, read the #LCSM primer on participating in a Twitter chat (the hashtag in your
tweets will be #cancersm, not #LCSM). Note that some tweetchat apps (like will not display
tweets longer than 140 characters. Hope you’ll join us!

Every Day is a Blessing!

Saturday, July 6, 2019

Hashtag Collections and Communities - JCOCCI Article

I am so pleased to have co-authored and to have the #gyncsm community and chat be a part of a newly published article in the JCO Clinical Cancer Informatics journal.

Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities  

"Cancer tag ontology evolved from patient-centered, disease-specific, Twitter-based chats as a cooperatively designed system that has grown in use from 2011 to 2017. This article provides guidelines, challenges, and opportunities for using hashtags to develop online communities of interest."

Thank you Matt Katz, MD for spearheading this important work for physicians, patients and health care providers. 

Dee                                                                                                                                                      Every Day is a Blessing! 





Saturday, June 8, 2019

#ASCO19 Opening Session - Focus on Patients

The theme of this year's ASCO Annual meeting was
Caring For Every Patient, Learning From Every Patient

This theme was exhibited in many sessions I attended and highlighted in the Opening Session starting with Dr Bertagnolli, in her President's Address.You may read her complete speech at

Dr Ang, a medical oncologist from Aukland, New Zealand spoke next.

Having read two books Dr Atul Gawande wrote,  I was thrilled to be able to hear him in person.

 As I heard these next words I thought of how it matched with what I would be saying later that afternoon in the Fireside Chat with Dr Dickson.

It was a privilege to speak at this year's ASCO meeting and Tweet from the meeting.
I was moved by the dedication of the over 40,000 health care providers -surgeons, oncologists, nurses, social workers, and researchers from around the globe who attended the meeting to learn how to improve cancer patient care. Thank you to each and every one of them.

Every Day is a Blessing!

Friday, June 7, 2019

Oral Abstracts at #ASCO19

The Oral Abstract session took place on Monday June 3.
I was able to listen the first three abstracts presented before I left for the airport.

You may search the abstracts available online at
for information on the other studies presented during that session. 
5503 NACT compared to chemoradiation in cervical cancer
5504 Recurrence rates in cervical cancer abdominal vs minimally invasive surgery
5505 Niraparib and Bev vs niraparib alone in recurrent plat sensitive OC
5506 Olaparib monotherapy vs chemo for germline BRCA plat sensitive relapsed OC
5507 CLIO study on olaparib monotherapy vs chemo in plat sensitive OC
5508 EWOC-1 Three different first line chemo regimens for vulnerable elderly women with OC

5500 Powell -  Ph 3 Paclitaxel + carbo vs Paclitaxel + ifosfamidein chem naive patientswith carincosarcomea of the uterus or ovary
5501 Antill - Duralumab in adv endometrial cancer accroding to mismatch repare status PHAEDRA Study
5502 Konstantinopoulos  Ph2 avelumab in patients with microsatellite stable(MSS)  ,microsatellite instable (MSI) and polymerase epsilon mutated  (POLE)recurent endometrial cancer

My last post on ASCO19 will be about the Opening session.

Every Day is a Blessing! 

Thursday, June 6, 2019

Education Sessions related to Communication at #ASCO19

I chose to attend two education sessions that dealt with communication. One Professional Development education session on Friday titled Tweets Chats and Posts: Using Social Media to Transcend Boundaries and Create Opportunities for Patients and the other a Pediatric Education session on Monday titled Navigating a New Cancer Diagnosis : Guiding Communication and Education. Below are some tweets and comments on each session

5/31/2019 Tweets Chats and Posts: Using Social Media to Transcend Boundaries and Create Opportunities for Patients 

Dr Subbiah, A Big World Made Small Using Social Media to Optimize Patient Care
I have followed Dr Subbiah on Twitter for a few years now so it was very nice to meet her in person.Dr Subbiah spoke on how to use Social Media effectively.

Dr Meisel, Using Social Media to Improve Clinical Trial Access and Opportunities
Dr Meisel mentioned how some health care providers may see social media as one more thing to do in their already busy day but went on to show the benefits of participating in social media such as recruiting for clinical trials. 
Dr Hamilton, The Metastatic Breast Cancer Project

Dr Knoll, The Patient Perspective : Improving Patient Engagement in Clinical trials

6/3/2019 Navigating a New Cancer Diagnosis : Guiding Communication and Education

Dr Dobrozi Multidisciplinary Communication and Education Milestones Following a Cancer Diagnosis
Dr Mack Communication a New Cancer Diagnosis : From the Lense of the Patient and Caregiver

Dr Rosenberg Novel Approaches to Enhance the Educational Process and IMprove Patient Engagement

Some of the best advice to health care providers I heard at ASCO. 

Every Day is a Blessing!

Wednesday, June 5, 2019

Gyn Cancer Education Sessions at #ASCO19

Here is a short summary( Tweets) and notes from the Gyn Cancer Education Sessions I attended at this year's ASCO Annual Meeting. Please note these sessions were not necessarily only ovarian cancer sessions.
Abstracts are available online at

6/1/2019 Pharma to Table
Levinson  - Immunotherapy in Gyn Cancers

Rubin- Recognizing and Managing Immun-related Toxicities
irAE = immun-related Adverse Events
Events could include - cough, colitis, endocrine issues, pneumonitis
With adverse events is was recommended to not reduce the dose but rather hold the dose

Moore - Response Predictions and Signatures for Immuntherapy
Tumor Burden is number of mutations in a tumor.

Dorigo - The Future of Immunotherapy in Gyn Cancers
TIL - Tumor Infiltrating Lymphocytes
Trials ongoing with HPV positive ovarian cancer ( yes , HPV can cause more than cervical and head and neck cancers. ) , CAR-T cells and vaccines
Trials like this one opening soon.
6/2/2019 Are We Hitting the Bull's -eye with Targeted Therapy
Clinical Science Symposium
This session reviewed a number of Abstracts.
Abstract 5509 - Sex hormone, Insulin and insulin-like growth factors in High stage endometrial cancers
Drs Huang, Bae-Jump

Abstract 5010 - Phase 2 trial ribociclib and letrozole in ER positive ovarian and endometrial cancers Drs  Colon-Otero and Mackay

Abstract 5011 - Phase 2 avelumab plus entinostat or placebo in epithelial ovarian cancer
Drs. Cadoo and Hays

6/2/2019 Wanna Get Away - Continuous treatment vs Treatment Holidays in Gyn Cancers
Dr Buckanovich - Successful Maintenance?

Dr  Oza - Maintenance Standard of Care

 Dr Rustin - Maintenance - Not Ready for Prime Time

Dr. Trent - Sarcoma Perspective

6/2/2019 Gyn Cancers is it Time to Put Away the Knife? 
For this session I did not have a good view of the screen so here are the high points from my notes.

Dr. Duska  - Adv OC -Time to Put Away the Knife?
NACT ( Neoadjuvent chemotherapy) is a viable option for a certain population of patients with ovarian cancer

Dr Pfisterer  We need a sharper smarter knife
Residual Tumor is an independent prognostic indicator. The Goal is R0 ( no visible disease left) . What prevents R0 . Factors that influence R0 are Inoperability (sugery not tolerated), Insufficiency (surgeon not capable of performing surgery . Patient survival better when surgery is done by a gyn onc.) Irresectability ( surgery not possible due to location of tumor.)

Dr Ramirez Has Laparoscopy Sung its Final Song in Cervix Cancer
Reported on LACC Study (  Study found that radical hysterectomy by MIS (minimally invasive survery ) lead to lower rates of disease free survival compared to open hysterectomy.

Dr Boggess - There is still a Role of MIS in Cervical Cancer 

6/3/2019 The More Things Change the Ovarian Cancer Edition
Monk - Is It Time to Change Upfront Chemotherapy For Ovarian Cancer

Dr Randall HIPEC: Standard of Care or Hype

Dr. Grisham - Low Grade Ovarian Carcinoma: Fitting the Square Peg in the Round Hold

 Tomorrow  I will share information from sessions dealing with communication ( Tweets Chats & Posts and Navigating a New Cancer Diagnosis).

Every Day is a Blessing!

Tuesday, June 4, 2019

Reporting On This Year's ASCO Annual Meeting

I returned recently from the ASCO 2019 Annual Meeting. This meeting was one of the best I have attended. I had the opportunity to met in person for the first time advocates, physicians and nurses I had interacted with online - Facebook or Twitter.  I also met a number of advocates and health care providers from around the world - Australia, Canada, England, and Nigeria to name a few.

Dr Dickson and I - #ASCO19
I was invited to speak during a ticketed session titled A Fireside Chat What Patients Want From Providers in Gynecologic Cancer on Saturday afternoon.  My partner was Elizabeth Dickson-Michelson, a gynecologic oncologist. I shared what the gyn cancer patient needs and how to advocate for yourself and others while Dr Dickson focused on how health care professionals could provide the services both emotional and physical that patients need. We also shared the results of two studies, The WOCC Every Women Study and the Needs of Women Treated for Ovarian Cancer : Results from a #gyncsm Chat . I am extremely appreciative of the support provided to me by Rutgers Cancer Institute of New Jersey which allowed my attendance at this meeting.

Before and after my presentation I was able to attend a number of very informative sessions in gynecologic cancer, communication and social media. If you didn't catch my live tweets from the meeting, over the next few days I will share information I learned on this blog. I will cover the Gyn Cancer Education Sessions  (Pharma to Table, Are We Hitting the Bulls Eye with Targeted Therapy,Wanna Get Away -Continuous vs Treatment Holidays, The More things Change OC Edition and Gyn Cancers: Is It Time to Put Away the Knife ) and two sessions dealing with communication ( Tweets Chats & Posts and Navigating a New Cancer Diagnosis), as well as an overview of the Gyn Cancer Oral Abstract Sessions and the Poster Discussion sessions. 

So Stand by --- or sit ---  more info is on its way.

Every Day is a Blessing!


Tuesday, May 28, 2019

2019 Annual Retreat On Cancer Research in New Jersey

This year's retreat was as informative and interesting as in years past.

The morning began with the Public Forum on ScreenNJ - Cancer Prevention , Education and Detection. Dr A Stroup started off the session talking about cancer burden in NJ. 
NJ Cancer Burden

Cancer Disparaties

Dr M Steinberg talked about Lung Cancer screening and treatment. Lung cancer is the leading cause of cancer death in women. He also made note of the fact that smoking affects nearly every organ of the smokers body. If a smoker stops smoking,  over time the risk of heart attack and stroke will drop. If you have 30 pack years of smoking ( smoke one pack a day for 30 years) then  Low Dose CT screening is available to you as a screening tool.

Screening option

Dr Natalie Pereira discussed Colorectal Screening and noted that it takes about 10 years for a abnormal polyp to become malignant cancer. The risks for colorectal cancer are age, family history, polyps, Lynch Syndrome and eating high quantities of fat or red meat.

Symptoms of colorectal cancer

Screening Recommendations

Dr Kinney shared information on the ScreenNJ Statewide program. Less than 60% of the eligible population in NJ has been screened for colorectal cancer and 10% of the eligible population in NJ has had lung cancer screening. We need to educate residents of NJ that these screening tests are available to them.

The Keynote speech was by Dr Steve Rosenberg, Chief of Surgery at the NCI. He presented an overview of the development of cell transfer therapy. There are a number of Immunotherapies using immune cells to recognize and kill cancer cells . He then focused on using those therapies to treat epithelial cancers. Epithelial cells are found in the linings of most organs - ovaries are one of those organs. Cell transfer therapy has had durable regressions in melanoma and in recent research in other epithelial cancers.

After lunch I listened to a short talk on Nanotechnology Approach for Precision Targeted Therapy for Ovarian Cancer by J Sapiezynski, a student at the Earnest Mario School of Pharmacy, Rutgers. He used liposomes as a dose delivery system for cisplatin and SiRNA.

During the poster session I was able to chat with researchers who presented the results of the  Gynecologic Cancer Patients' and Supporters' Reports of Sharing (and Holding Back)Cancer-Related information during Onoclogy Visits Study. Eighteen patients ( during cycles 2 and 5 of their treatment)  and sixteen caregivers took part in the study. The theme that "Everything is easy to share" showed that patients found it easiest to discuss side effects with their oncology team. Yet there was also a theme of "Nothing held back...except" when patients or caregivers felt uncomfortable sharing some information - such as embarrassing information or prognosis.

I am so pleased to see that important research is taking place right here in my home state.

Every Day is a Blessing! 

Saturday, May 4, 2019

Comment Period -Germline and Somatic Tumor Testing in Epithelial Ovarian Cancer guideline

ASCO develops practice guidelines for cancer treatment and care. Currently draft recommendations for the Guideline for Germline and Somatic Tumor Testing in Epithelial Ovarian Cancer  is open for comment. The public is invited to comment on the draft.

Here is information from ASCO  if you would like to read and comment on the draft rerecommendations -

ASCO invites interested stakeholders to submit comments on draft recommendations from the Germline and Somatic Tumor Testing in Epithelial Ovarian Cancer: ASCO Clinical Practice Guideline. 
To participate, interested reviewers can download the confidentiality agreement and email a signed copy to to receive access to the survey containing the guideline recommendations. Comments will be accepted through Thursday, May 16. Learn more at
Advocates, patients and caregivers may comment too.

Every Day is a Blessing!

Wednesday, April 24, 2019

Upcoming Public Forum on ScreenNJ - May 2019

For the past few years I have attended a number of public forums as part of the Annual Retreat on Cancer Research in NJ. You may read about the one I attended in 2018 on HPV cancers here  and  the one I attended in 2017 about precision medicine here

If you are an cancer advocate or just a resident interested in learning more about screening I invite you to register for this year's Public Forum about ScreenNJ - Cancer Prevention Education and Detection. Presentations this year include Cancer Burden in NJ, Colorectal Prevention and Detection, Lung Cancer Screening , and information on the ScreenNJ State Program. This year's forum is on May 23, 2019 from 8:30 am - 10:00 am at the Rutgers Student Center in New Brunswick, NJ.

Registration is free and may be found at:

I hope to see you there!

Every Day is a Blessing!