Reaching a milestone - This Blog's 10th Anniversary

It is hard to believe that on this day in 2007 I created this blog and wrote my very first blog post. I was inspired through friends I met at the LiveSTRONG Survivors Summit to write a blog as a way to share my story with other women diagnosed with ovarian cancer.  I also provided information on ovarian cancer awareness organizations in NJ and their local events.

Through the years I have covered many topics related to what I experienced as a patient and survivor. Some posts were about the physical aspects of being a survivor but I also shared the emotional aspects of treatment and survivorship. I wrote about my recurrence in 2008, from hearing my cancer had returned, to the surgery to remove my spleen and resection my liver, to the chemotherapy and the allergic reaction to carboplatin that required a hospital stay. I have written about dealing with "scanxiety" as I wait for test results, the sadness and guilt when my  friends pass away from ovarian cancer, the frustration from chemo brain and the peripheral neuropathy in my toes.

I also shared the happy occasions, the graduations, weddings and births and wonderful family trips. Writing this blog also opened doors for many other advocacy avenues. Through my activities on the Twitter account of this blog,  I co-founded the #gyncsm ( Gyn Cancer Social Media ) Community. I  co-authoring the book "100 Questions and Answers about Ovarian Cancer", and wrote blogs posts for SGO, SHARE and Cancer Hope Network and my cancer center's newsletter.

As my advocacy work expanded to research advocacy, my blog posts evolved to be a way for me to explain in layman's terms the latest ovarian cancer research. Now I write about new clinical trials and trial results reported in peer reviewed journals. I blog and Tweet about the ovarian cancer research when I attended ASCO annual meetings in person.

I've never kept close track of the statistics for this blog. Usually once a year, on this blog's anniversary I look back at what I wrote during the previous year. In 2017, I wrote 54 posts including this one. I have published a total of 1060 posts in the past 10 years. Some years I wrote more blog posts than other years but I continued to blog. This blog's pages have been viewed 356,827 times.

My top five posts since 2010 (when Blogger started keeping track)  are:

What I Wish I Knew Before My First Chemo

May 9, 2011

2209 views

ASCO 2015 Part I : Connections

Jun 5, 2015

1760 views

ASCO 2015 - Connections and Knowledge

Jun 3, 2015

1635 views

No Berry Smoothie Flavored Readi-CAT for Me

Aug 17, 2011

1564 views

Book Review: Making Sense of Medicine

Sep 11, 2016

1406 views

I have enjoyed sharing my story and educating others about ovarian cancer through this blog. I hope that women diagnosed with ovarian cancer, their caregivers and others who follow this blog have found it helpful. I do believe - Every Day is a Blessing !

See you all in 2018!

Dee
Every Day is a Blessing!
PS : This blog may look different when you check back in January. 

Happy Holidays!

With Christmas fast approaching I will be taking a break from posting to this blog for the next week. Be sure to check back on the 30th for a special post.

I wanted to be sure with wish everyone...

Dee
Every Day is a Blessing!

Off Balance

A few weeks ago I was watching the TV show This is Us and the young character said she felt "off balance".

For some reason those words stayed with me. After the show ended I kept thinking back to how it feels to be "off balance". I will admit I have felt off balance many times after my cancer diagnosis.  It is a bit hard to describe how that feels but I'll give it a shot.

During treatment, I was not doing the things I had regularly done. I wasn't working. My husband and daughter cleaned the house, went food shopping and made all the meals. I learned over time that it was OK to put myself first and to ask for help. But it took some time to get that balance back.

There were times when I was in treatment when I would go out with long-time friends for dinner. I was happy to be there, yet I was off balance. I sat there with my scarf on and looked at their hair. I heard them talk about making plans for vacations or redesigning their kitchen or complaining about traffic. But I was in treatment. It didn't feel right to share how I felt so exhausted that I didn't get out of bed for two days. How my scalp actually hurt - as if my hair had been in a pony tail for days. It was like I was watching them from afar. Maybe I was a bit jealous that they could make plans because I wasn't planning past my next chemo treatment. It was like I couldn't be in the real world while I was in the "cancer world".

Then I finished treatment. Great. I should be happy. And in a way I was but at the same time I was scared. So I was off balance again. I could never go back to normal so I would have to find a new normal. But what was that? I tried but never achieved the old normal. But eventually I had a good new normal going along with the occasional bout of anxiety over CT scans , Ca-125's and doctor appointments.

There are times to this day that having had a cancer diagnosis makes me feel off balance. When I hear of a women I call friend who will be entering hospice or when a clinical trial I hope will show amazing results in treating ovarian cancer comes back equal to the current treatment I feel off balance.

I am thankful for my health care team, my husband, family and friends who help me get  my balance back.

Dee
Every Day is a blessing! 

Chemo Induced Peripheral Neuropathy - Participating in a Clinical Trial

   
Recently my friend, Lynn, shared with me what she had learned during the Foundation for Women's Cancer Ovarian Cancer Survivors Course held in October at the Summit Medical Group. One session on chemotherapy induce peripheral neuropathy was presented by Timothy Marshall, PhD a Professor of Physical Therapy at Kean University ( Union, N.J.). Knowing I have experienced neuropathy she thought I might be interested in a clinical trial he was running and she sent me his contact information.  I contacted Dr Marshall in November to learn more about his trial Chemotherapy-Induced-Peripheral Neuropathy (CIPN), Gait and Fall Risk.

Chemotherapy induced peripheral neuropathy can be numbness, tingling, pins and needles and pain in the toes and fingers. I experience this in my toes and have mentioned it in a few entries in this blog. Dr. Marshall sent me the Informed Consent form for the trial and we set a date to be evaluated in December. 

Last week I went to the Kean University Campus to take part in the trial. This was a relatively easy trial - as trials come -  to participate in. I shared with Dr. Marshall the chemotherapy drugs I had received, their dosage and the number of cycles I had during my initial and recurrence chemotherapy treatments. He asked about the level of exercise I currently take part in and measured my height and weight.

Then the actual evaluation started. The first test was to measure my hand grip strength.  I was asked to squeeze a handgrip dynanometer (3 times in each hand). 
Next after taking off my shoes and socks I was asked to sit on a table. and close and cover my eyes.  Dr. Marshall touched my feet and toes using a Jamar Microfilament - a very thin bendable wire, to assess sensation in my feet.   I was told to respond when I could feel the filament touch various parts of my foot. 

After putting my shoes and socks back on, a BTS G-Walk system was fitted to my waist. The BTS G-Walk system is a wireless tri- axial accelerometer. An accelerometer is an electromechanical device that measures acceleration forces. The system included EMGS placed on both my calves front and back. Electromyography (EMG) is a way to assess how well the muscles are working while I walk. I walked from one side of the room to the other a few times, all the time the Walk system was gathering data.  Lastly, I was asked to perform a ‘Timed-up and-Go' test, in which I had to stand up from a chair, walk about 9 feet, turn around and walk back to the chair and sit back down; this assessed fall risk. 

And in one hour the trial tests were complete.

I enjoyed talking to Dr. Marshall about his research including this study published in the Journal of Cancer Research and Practice Chemotherapy-Induced-Peripheral Neuropathy (CIPN), Gait and Fall Risk in older adults following cancer treatment. 

This trial is currently recruiting so if you are a physician and would like to refer a patient who is experiencing the impact of CIPN or a cancer patient/ survivor who continues to experience CIPN years after treatment or is experiencing CIPN while undergoing treatment, feel free to contact Dr. Marshall at marshati@kean.edu or call 908-737-6177. 

Thank you Dr. Marshall for doing research crucial to improving the survivorship of cancer patients. 

Dee
Every Day is a Blessing! 

Where does Ovarian Cancer originate?

In the past it was thought that fallopian tube cancers were precursors to ovarian cancer. In October, in the Journal Nature Communications research supporting that hypothesis was presented in the article, High Grade serous ovarian carcinomas originate in the fallopian tubes.  

Researchers used whole exome sequencing (a technique for sequencing all of the protein-coding genes in a genome) and  copy number analyses ( process to analyze DNA chromosomes number variations) to study fallopian tube lesions, ovarian cancers and metastases from women with high grade serous ovarian cancer. The fallopian tube lesions were examined for p53 signatures, serous tubal intraepithelial carcinomas(STICS) and fallopian tube carincinomas. TP53, BRCA1, BRCA2 oor PTEN specific alterations found in the ovarian cancer tumors were present in the serous intraepithelial carcinomas (STICS). Analysis revealed that the p53signatures and the STICS are precursors of ovarian carcinoma.

Using a mathematical model researchers determined that it took an average of 6.5 years for the earliest development of a fallopian tube lesion to become ovarian cancer. They also found that metastasis followed rapidly after the ovarian cancer carcinoma was initiated on average 2 years. Though the number of women whose samples were tested in this study was small(5), the results suggest that ovarian cancer is originates in the fallopian tubes.


To read the complete study please visit https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5653668/

Additional articles on this research are available at:
NCI
https://www.cancer.gov/news-events/cancer-currents-blog/2017/ovarian-cancer-fallopian-tube-origins
Science Daily
https://www.sciencedaily.com/releases/2017/10/171023094404.htm
Futurity
http://www.futurity.org/ovarian-cancer-fallopian-tubes-1583362-2/

This research may lead to improved screening tests. 

Dee
Every Day is a Blessing!
 

A Hobby Begun During Treatment

When I was in treatment in 2005 a friend of my son's gave me an acrylic painting kit.  That kit started the hobby I have enjoyed the past few years. I hope you enjoy these dog paintings as much as I enjoyed creating them.

Dee
Every Day is a Blessing!

A Day on the Hill

Along with other gynecologic patient advocates, I had the privilege of joining gynecologic oncologists from the Society of Gynecologic Oncologists in Washington, DC on Friday for their Capital Visit Day.

Thursday evening we had a training session during dinner. This training allowed us to learn the best way to ask our Senators and Congressmen/women to support funding for gynecologic cancer research.

On Friday, I headed to Capital Hill with Dr Ginger Gardner, a gynecologic oncologist from Memorial Sloan Kettering Cancer Center. We visited with the legislative assistants for Senators Menendez (NJ), Booker (NJ), Schumer (NY) and Gillibrand (NY) and Representatives Watson Coleman (NJ-12), Maloney (NY-12) and Frelinghuysen(NJ-11). 

As we introduced ourselves to each assistant I was able to share a bit about my ovarian cancer diagnosis and my participation in clinical trials. Then we moved on to our "asks".

Increased funding for gynecologic cancer clinical trials at the NCI/NIH 
In the past few years there has been a decrease in the number of NIH clinical trials available to women with gynecologic cancers.In 2012 there were 56 trials for gynecologic cancers while in 2016 there were 18 trials.
Here is the information sheet we left during our visits.

Preserve the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense
The Senate version of the National Defense Authorization Act of 2018 contains 4 sections (733, 891, 892, 893) which would basically eliminate the CDMRP. The CDMRP includes the Ovarian Cancer Research Program (OCRP). The House version of the bill does not include those sections.

There are currently 850,000 active duty female service members, wives and adult daughters. Approximately 11,800 will be diagnosed with ovarian cancer in their lifetimes at a cost of $971 million. 
The OCRP also includes the Ovarian Cancer Research Academy which  helps to develop young investigators to become lifelong ovarian cancer researchers.


We left this brochure, 

 (http://cdmrp.army.mil/ocrp/pbks/ocrppbk2017.pdf ) with each assistant. I recommend you read through it to see the groundbreaking basic research being done at the the OCRP.

I urge you to reach out to your Senators and the Congressman/woman from your district and ask them to support these crucial research programs. Thank you!


Dee
Every Day is a Blessing! 

I Took a Break

September,  Ovarian Cancer Awareness month is a very emotionally and physically draining month for me. I spend a good deal of time thinking about and talking about ovarian cancer - symptoms, treatments, statistics. I posted to this blog every day as well as shared information from other organizations  in daily promotions on Facebook and Twitter. I attended fundraising walks and other events to raise funds for ovarian cancer research.

In the middle of the month I had an appointment with my gyn onc for my 6 month check-up. I also had a CT scan since my CA-125 has been creeping. I dealt with so many emotions including the fear I might have recurred. The exam and CT report were good so I am set for 6 more months.

But during this month of ovarian cancer, I remembered. I remembered women who became my friends over the past 12 years who have died because of this disease - like Janice, Carol, Jane, Sherry and the list goes on. It made me angry and sad.

I know that when that happens I need to take a break. And that is what I did. I stepped away and concentrated on family ( visits with kids and grandsons)  and other non-cancer things such as beginning work on two paintings. I recharged my batteries to begin my advocacy work again.

And then last week,  I got this in the mail !

As a Patient Advocate Member of ASCO I was chosen as a 2016 Advocacy Champion - Speaker's Club for legislative advocacy work ( e-mails , tweets and blog posts)  that I did for ASCO on cancer research and funding issues in 2016. I don't do what I do to be recognized but it felt good to be appreciated.

If you are a patient advocate you should consider joining ASCO. You will be able to network with the top oncologists in the world and stay on top of the latest research in precision medicine.  Check out this membership page for more information https://www.asco.org/membership. 

I'll be posting more ovarian cancer research news in a few days.

Dee
Every Day is a Blessing!

Day 29 A month of Teal : Your Verse - My Verse

"What will your verse be? 

Each of us has something to share. A voice, a passion, a perspective. The potential to add a stanza to the world's story.   ..."

Take a few minutes to watch this ad. Don't skip it - listen to the words and look at the images.

Apple - iPad Air - TV Ad - Your Verse from EPC Group.net on Vimeo.

Apple ran this series of advertisements for the Apple iPad Air in 2014 . I thought I might want to write a blog post based on my verse so I jotted this idea down on my blog topics sheet.

As we come to the end of Ovarian Cancer Awareness month I thought this would be the perfect time to talk about my verse.

I have always been interested in science. When I graduated high school the quote going with my yearbook photo was - To the Moon and Beyond. I thought I would become and astronaut.  I never did become one, I became a chemical engineer and teacher, but the science I learned helped me many times on my life's journey.

When I was diagnosed I didn't know a lot about ovarian cancer and I hadn't met anyone with ovarian cancer. I reached out to Cancer Hope Network and talked to a support volunteer who was a 5 year ovarian cancer survivor. Then my gynecologic oncologist recommended I reach out to the Kaleidoscope of Hope Ovarian Cancer Foundation and the LIVESTRONG Foundation. Both organizations gave me the tools to learn more, empowered me to share my story, allowed me to network with other women diagnosed with the disease and gave me hope.

In the time since my initial diagnosis I have spent a great deal of time learning about ovarian cancer from genetics to pathology to histology to immunotherapy to targeted therapies. I have been given amazing opportunities to interact with oncologists, genetic counselors, researchers and other women advocates. I have shared my story with small groups of women and with audiences filled with health care providers and cancer researchers. 

I am blessed to have been given the opportunity to survive ovarian cancer and my verse must include being the voice of those women whose lives were taken too soon by a disease where an effective screening test has still not been developed.

So what is the  stanza I have added to the world's story -

Hearing the word cancer,  
My knees are weak.
With family, faith and expert doctors 
I remain in this world.
Now I take what I love and 
share my "voice,  passion, and perspective" 
so all will know about this disease and 
those women whose life's journey include
ovarian cancer. 

What is your verse?


Dee
Every day is a Blessing!

Day 28 A month of Teal :My Top Picks for Brochures and Links about OC

Over the years there have been certain websites and brochures that have been my "go to" places for ovarian cancer information. As we close in on the end of Ovarian Cancer Awareness Month I want to share them with you.

Foundation for Women's Cancer ( SGO):
Find a Gyn-onc http://www.foundationforwomenscancer.org/find-a-gynecologic-oncologist/
Ca-125 CA 125 Levels: Your Guide (2017)
Ovarian Cancer - Ovarian Cancer: Your Guide (2017)

NCCN:
Guideline for Patients with Ovarian Cancer https://www.nccn.org/patients/guidelines/ovarian/index.html

NCI:
https://www.cancer.gov/types/ovarian

NIH:
https://www.nih.gov/news-events/nih-research-matters/detailed-look-ovarian-cancer
statistics: https://seer.cancer.gov/statfacts/html/ovary.html

Cancer.net (ASCO):
http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer

ACS
https://www.cancer.org/cancer/ovarian-cancer.html

National Advocacy Organizations 
OCRFA- https://ocrfa.org/
NOCC - http://www.ovarian.org/

Dee
Every Day is a Blessing!

Day 27 A Month of Teal: 50 States of Teal

The report 50 States of Teal Ovarian Cancer Care Across America is an undertaking of the OCRFA.
The Report  "evaluated the performance of each state in connecting women to quality ovarian cancer care through 10 metrics. These metrics span the entire continuum of care, including prevention, diagnosis, treatment, survivorship and end-of-life care.  We awarded states one point for each metric they met, for a maximum of 10 points. The last update to the report was in 2015.

I was interested in seeing how NJ, my home state,so I searched the site and found this.

 

Read more at http://www.50statesofteal.org/state/NJ/#kZR3EKpoedUHyPaU.99

How did your state do? 

Dee

Every Day is a Blessing!

Day 26 A Month of Teal : Twitter Images for Advocacy

I use twitter to raise awareness of ovarian cancer both as an individual and as the co-moderator of the #gyncsm ( gyn cancer social media) chat.  Over the past few weeks I have compiled a few Tweets which shared informative images. Thank you OCRFA, SGO, NOCC, Foundation for Women's Cancer and the Sandy Rollman Ovarian Cancer Foundation for these images.

1 in 75 women will develop #ovariancancer in her lifetime. RT to raise awareness. Full infographic: https://t.co/zwyObnxGFP #30DaysofTeal pic.twitter.com/Y5Cp5A37uU

— ocrfa (@ocrfa) September 13, 2017

Full image

Know the risk factors of ovarian cancer. Retweet this graphic to save a life! #knowovarian #nocc pic.twitter.com/xOXNqowO9l

— Natl Ovarian Cancer (@NOCC_National) September 18, 2017

We are proud to join the @NOCC_National to help bring awareness to the deadliest of all gynecological cancers. #KnowOvarian #OvarianCancer pic.twitter.com/No5JPODPvX

— Stand Up To Cancer (@SU2C) September 11, 2017

Not enough women know the signs and symptoms of ovarian cancer. Share this image to save a life! #knowovarian #nocc pic.twitter.com/F7aqi6u5gT

— Natl Ovarian Cancer (@NOCC_National) September 4, 2017

Do you know the five main gynecologic cancers? #sharethepurplelove #GCAM #EndWomensCancer pic.twitter.com/YqtwCCvygV

— FdtnForWomensCancer (@GYNCancer) September 15, 2017

Do you know the symptoms of #ovariancancer? #sharethepurplelove #EndWomensCancer #GCAM pic.twitter.com/vDSl8Z3CPq

— FdtnForWomensCancer (@GYNCancer) September 11, 2017

Celebrate the survivor in your life during Gynecologic Cancer Awareness Month (#GCAM) https://t.co/LGlpcKA6vU

— SGO (@SGO_org) September 7, 2017

#Philly don't miss this sight one week from today as #boathouserow goes teal for Ovarian Cancer Awareness Month! It's breathtaking! pic.twitter.com/ypXuDcJ0BM

— Sandy Rollman FDN (@srocf) September 13, 2017

Ladies. This Stat is Shocking! @srocf @RobinSCohen Want U 2 Know! RT RT RT Until blue in the Face. pic.twitter.com/eW9TkvxRSw

— William deVry (@WilliamdeVry1) September 11, 2017

Have you seen any photos or graphics that you feel have helped to raise awareness this month? Please share a link in the comments below.  

Dee
Every Day is a Blessing!

Day 25 A Month of Teal: OC Around The World

Women are at risk for ovarian cancer around the world.

Ovarian Cancer is the 7th most common cancer worldwide.

 *

There were 239,000 new cases of ovarian cancer worldwide in 2012.

 *

The rate of ovarian cancer was 2 times higher in Central and Eastern Europe than in Eastern Asia.

*

The highest incidence of ovarian cancer was in Europe and Northern America; 

and the lowest incidence in Africa and Asia 

*

About 58% of ovarian cancer cases occurred in less developed countries.

 *

The highest death rates from ovarian cancer were found in 

Lithuania, Ireland, Latvia, Poland and Norway

Sources:

http://www.wcrf.org/int/cancer-facts-figures/data-specific-cancers/ovarian-cancer-statistics

https://academic.oup.com/annonc/article/27/11/2017/2467050/Global-trends-and-predictions-in-ovarian-cancer

Dee
Every Day is a Blessing

Day 22 A Month of Teal: Gene Mutations and Ovarian Cancer

Most ovarian cancers are sporadic. They are caused by somatic mutations.

But about 20 to 25 percent of women diagnosed with ovarian cancer have a hereditary tendency to develop the disease. This tendency is called Hereditary Breast and Ovarian Cancer Syndrome (HBOC). HBOC may be diagnosed if your family history shows multiple members of the same side of your family being diagnosed with breast and/or ovarian cancer.
Cancer.net lists these situations as indicative of HBOC

• 1 or more women are diagnosed at age 45 or younger
  
• 1 or more women are diagnosed with breast cancer before age 50 with additional family history of cancer, such as prostate cancer, melanoma, and pancreatic cancer
  
• There are breast and/or ovarian cancers in multiple generations on the same side of the family, such as having both a grandmother and an aunt on the father’s side both diagnosed with these cancers
  
• A woman is diagnosed with a second breast cancer in the same or the other breast or has both breast and ovarian cancers
  
• A male relative is diagnosed with breast cancer
  
• There is a history of breast cancer, ovarian cancer and/or pancreatic cancer on the same side of the family
  
• There is a history of breast and/or ovarian, pancreatic, or male breast cancer in a family of Ashkenazi Jewish ancestry
  

What germline mutations are linked to Hereditary Ovarian Cancer?
"Between 65 and 85 percent of germline mutations are in the BRCA1 or BRCA2 gene. The lifetime risk of ovarian cancer in women with a BRCA1 gene mutation is 40 to 60 percent, and the lifetime risk in women with a BRCA2 gene mutation is 20 to 35 percent."

"A significantly increased risk of ovarian cancer is also a feature of certain rare genetic syndromes, including a disorder called Lynch syndrome. Lynch syndrome is most often associated with mutations in the MLH1 or MSH2 gene and accounts for between 10 and 15 percent of hereditary ovarian cancers."

Are there other mutations linked to  ovarian cancer? 
Yes, other mutations  include:

• AKT1
• BARD1
• BRCA1
• BRCA2
• BRIP1
• CDH1
• CHEK2
• CTNNB1
• MLH1
• MRE11
• MSH2
• MSH6
• NBN
• OPCML
• PALB2
• PIK3CA
• PMS2
• PRKN
• RAD50
• RAD51C
• RAD51D
• STK11
• TP53 Li-Fraumeni Syndrome (LFS)

Source:NIH  https://ghr.nlm.nih.gov/condition/ovarian-cancer#genes  

It is recommended by the Society of Gynecologic Oncology that all women diagnosed with ovarian cancer have genetic testing. (https://www.sgo.org/wp-content/uploads/2012/09/PB-182.pdf)
The SGO also has available a Genetics Toolkit 2016  online.

Additional information on HBOC may be found on the FORCE website http://www.facingourrisk.org/index.php 

My next post for Ovarian Cancer Awareness Month will be on Monday Sept 25th. 

Dee
Every Day is a Blessing! 

Day 21 A Month of Teal : Your Treatment Team

In the past few posts I have discussed different treatments that women diagnosed with ovarian cancer may undergo . You might think the only members on your health care team are a gynecologic oncologist or surgeon, oncologist and oncology nurses. That is what I thought too initially. But I was wrong.

I learned in a very short period of time that there were other very valuable members of my team.

On my team was my pharmacist who helped me create a schedule for taking my medications to prevent nausea, constipation and pain without interfering with other prescriptions I was taking.

On my team was my social worker who was there when I needed a shoulder to cry on or a technique to keeping me calm while waiting for test results or when my treatment was delayed due to low white blood counts.

On my team was my nutritionist  who gave me tips on what to eat to try to get my hemoglobin higher and how to eat smaller meals through the day.

On my team was my genetic counselor who I spoke to before ( we put together a pedigree/ family tree) and after having genetic testing ( we discussed the results).

On my team was my pathologist who even thought I never meeting him/her in person provided me with information that impacted the treatments I had.

On my team was my radiologist who let me know when my tumors were shrinking and when I was disease free. I was lucky enough to meet one radiologist in person.

On my team was my clinical trial nurse who gave me her cell phone so I could reach out to her at any time with questions and concerns.

On my team were the oncology treatment nurses who made sure I was administered the correct chemotherapy.

On my team was the cancer center staff who greeted me warmly as I signed in for chemo and scheduled port flush and  follow-up appointments.

All of these people played a role in my life for months at a time.

You may read more about your treatment team on the Patient Resource Page
http://www.patientresource.com/Ovarian_Cancer_Team.aspx 
and
Cancer Care
https://www.cancercare.org/publications/59-your_health_care_team_your_doctor_is_only_the_beginning


Dee
Every Day is a Blessing!  

Day 20 A month of Teal : Radiation Therapy Treatments

Instead of using chemicals, radiation therapy uses high energy particles such as x-rays to destroy cancer cells.  A radiation oncologist is specially trained to deliver this therapy.

While radiation therapy is not usually given for initial treatment of ovarian cancer there may be times when a women experiencing a recurrence may be offered radiation for small localized areas such a lymph nodes or small lesions in difficult to operate areas.

Most radiation treatments are given using external radiation but for some gynecologic cancers internal radiation therapy or brachytherapy is used. 

Side effects include

• fatigue, 
• mild skin reactions, 
• upset stomach
• loose bowel movements.

For additional information please visit
http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/cervical/diagnosis-and-treatment/radiation-therapy/

or print out this brochure from ASTRO.
http://radonc.ucla.edu/workfiles/gyn07.pdf 

Dee
Every Day is a Blessing! 

Day 19 A Month of Teal: Treatments for Recurrence - Chemotherapy/ targeted therapies

Depending on how your disease presents itself on recurrence you may be offered surgery, chemotherapy or a clinical trial. I was offered surgery and chemotherapy or a clinical trial. A majority of women will have chemotherapy but I strongly urge women to consider a clinical trial.

Below is a list of drugs you may be offered:

Chemotherapy Drugs for Recurrence platinum sensitive:

• Cisplatin or carboplatin + paclitaxel 
• Carboplatin + gemcitabine
• Carboplatin + pegylated liposomal doxorubicin
• Carboplatin + epirubicin
• Cisplatin + doxorubicin + cyclophosphamide  ( recurrence 12+yrs)

Carboplatin and Taxol are considered the standard for first time platinum sensitive recurrence

Chemotherapy Drugs for Recurrence Platinum Resistant

• Paclitaxel
• Topetecan
• Gemcitabine
• Pegylated liposomal doxorubicin
• Pegylated liposomal doxorubicin + trabectedina 
• Etoposide
• Hexamethylmelamine (Altretamine)
• Irinotecan
• Oxaliplatin
• Vinorelbine
• Fluorouracil and capecitabine
• Tamoxifen
• Pemetrexed
• Bevacizumab
• The U.S. Food and Drug Administration has approved the use of bevacizumab ( Avastin)  in combination with pegylated liposomal doxorubicin, paclitaxel, or topotecan.  Two trials OCEANS and AURELIA showed the improvement in PFS ( progression free survival).
• Olaparib (PARP inhibitor)- maintenance (9/12/17 FDA Approval) / after 3 or more chemotherapy treatments and a BRCA mutation (2014 FDA approval)
• Rucaparib ( BRCA mutations, 2 or more chemotherapy treatments, 2016)
• Niraparib(Maintenance therapy BRCA mutation not required)

For additional information about each of these treatments and evidence for their use  please see
https://www.cancer.gov/types/ovarian/hp/ovarian-epithelial-treatment-pdq#link/_789 
https://www.cancer.gov/news-events/cancer-currents-blog/2017/fda-olaparib-ovarian-cancer-maintenance?cid=eb_govdel

or the NCCN guideline page
https://www.nccn.org/patients/guidelines/ovarian/index.html#63/z 

Dee
Every Day is a Blessing ! 

 

 

Day 18 A Month of Teal : Ovarian Cancer - Recurrence is Common

Recurrence was one thing I tried not to think about when I was initially diagnosed. But more than 80% of women diagnosed with ovarian cancer ( or fallopian tube or primary peritoneal cancer ) have a recurrence after completing initial treatment

Most likely once you finish front line treatment for ovarian cancer your doctor will follow up with you on a regular basis. He/she may ask you to have your CA-125 level checked every 1-3 months . Increases over time in your level of CA-125 may signal a recurrence. A trial by the Medical Research Council (MRC) and the EORTC  showed there was no benefit to women in detecting and treating a rising CA-125. If your CA125 rises you may be asked to have a CT scan.

Patients with confirmed recurrent disease are separated into two groups:

• Platinum resistant or platinum refractory recurrence is when a women 's disease will progress while on initial treatment or when the disease returns within 6 months of completing initial treatment.  A women will usually begin treatment with a drug other than the carboplatin/cisplatin taxol combination that she was given originally.
• Platinum sensitive recurrence  is when the disease recurs more than  6 months from finishing initial treatment. In this case, most women are given a platinum drug and another chemotherapy agent. 

Sources:
NCI
https://www.cancer.gov/types/ovarian/hp/ovarian-epithelial-treatment-pdq#section/_82
OCRFA
https://ocrfa.org/patients/about-ovarian-cancer/recurrence/

Over the next two days  I will share more information on the chemotherapy and targeted therapy treatments a women might receive after a recurrence.

Dee
Every Day is a Blessing!

Day 15 A Month of Teal : Chemotherapy Side Effects and Cold Caps

The chemotherapy women take to treat ovarian cancer may cause a number of side-effects including

• Nausea*
• Loss of appetite
• Mouth sores
• Increased chance of infection
• Bleeding or bruising easily
• Vomiting*
• Hair loss**
• Fatigue
• Constipation
• Diarhea

* ASCO recently released a guideline for prescribing anti-nausea medication called Antiemetics:ASCO Clinical Practice Guideline Update. You may read the full text here> http://ascopubs.org/doi/10.1200/JCO.2017.74.4789 

**Recently, the FDA has approved a cold cap (DigniCap and Paxman cooling systems,) that can be worn during chemotherapy which prevents  hair loss. See this ACS page for more information.
https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/hair-loss/cold-caps.html


Be sure to notify your doctor or nurse if you should experience any of these side effects.

I'll be back on Sept 18th to share more information with you. 

Dee
Every Day is a Blessing!

Day 14 A Month of Teal: Chemotherapy on Initial Diagnosis

The section below is an excellent description of the chemotherapy drugs used for ovarian cancer. It can be found in full on the  Cancer.net website sponsored by ASCO.

Ovarian, Fallopian Tube, and Peritoneal Cancer: Treatment Options

http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/treatment-options

"Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ 
ability to grow and divide. Chemotherapy is given by a gynecological oncologist or a medical oncologist, a doctor who specializes in treating cancer with medication.
Systemic chemotherapy gets into the bloodstream to reach cancer cells throughout the body. Common ways to give chemotherapy include an intravenous (IV) tube placed into a vein using a needle or in a pill or capsule that is swallowed (orally).
A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time.
Most of the chemotherapy options described below apply to epithelial ovarian cancer, as well as fallopian tube cancer and peritoneal cancer. The type of the chemotherapy used depends on several factors.

• Adjuvant chemotherapy. This is done to destroy cancer remaining after surgery. This treatment typically consists of carboplatin (Paraplatin) given with paclitaxel (Taxol) or docetaxel (Docefrez, Taxotere) intravenously (IV), which is through the vein. Most of these drugs are given every 3 weeks. 
  Another approach is called “dose-dense” chemotherapy. This is when the drugs are giving weekly instead of every 3 weeks. Some studies show that using dose-dense paclitaxel with carboplatin may improve survival rates compared to giving the drugs every 3 weeks. Talk with your doctor about which scheduling option is best for your situation. (The  recent ICON 8 study reported on at #ESMO17 found no difference in survival between dose dense and every 3 week chemotherapy http://www.esmo.org/Conferences/ESMO-2017-Congress/Press-Media/Press-Releases/ICON8-Trial-Reaffirms-Standard-Dosing-in-Ovarian-Cancer-Chemo)
  
  
  In addition, a third way to give adjuvant chemotherapy is to infuse it directly into the abdomen. This is called intraperitoneal or “IP” chemotherapy. This approach can be considered for women with stage III disease after a successful surgical debulking procedure. In previous studies, IP treatment was more effective when compared to intravenous treatment on the every 3-week schedule.
  
  Studies comparing dose-dense (weekly) IV chemotherapy with carboplatin and paclitaxel to IP chemotherapy with the same drugs show similar outcomes. Doctors are discussing whether the more intense IV approach can replace the use of IP chemotherapy.
  
  With each of these approaches, doctors consider a variety of factors, such as age, kidney function, and other existing health problems.
  
  Research studies are underway to see if additional medications, such as PARP inhibitors, should be used. Several studies have evaluated whether adding bevacizumab (Avastin), which is an anti-vascular or “blood vessel growth blocking” antibody, to standard chemotherapy following initial surgery is helpful. In general, bevacizumab used for ovarian cancer has prolonged the time in some patients before the cancer returns; see Latest Research."
  
  
  Additional information on chemotherapy may be found on these pages:
  https://www.nccn.org/patients/guidelines/ovarian/index.html 
  http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/ovarian/chemotherapy/
  
  
  Dee
  Every Day is a Blessing!
  
  

Day 13 A Month of Teal : OC Treatment- Surgery

Surgery is the main treatment for ovarian cancer.

Surgery for ovarian cancer should done by a gynecologist oncologist. A gynecologic oncologist is a physician who specializes in diagnosing and treating cancers that are located on a woman’s reproductive organs. Studies have found that women diagnosed with ovarian cancer  have better outcomes when the surgery is done by a gynecologic oncologist.(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046749/)

For the most common ovarian cancer, epithelial,  surgery is done for staging and debulking. Debulking surgery removes as much of the tumor as possible wherever it may be in the abdomen.  The goal is to achieve optimum debulking or no visible tumors.

Surgery may include:
Hysterectomy
bilateral salpingo-oophorectomy ( both ovaries and fallopian tubes). A Unilateral salpingo-oophorectomy may be done if a woman wishes to have children.
omentectomy ( removal of the tissue covering the organs in the abdomen) .
Lymph nodes ( Lymphadenectomy )
Debulking surgery may include removing tissue from other organs, such as the spleen, gallbladder, stomach, bladder, or colon. 

Most ovarian cancers are treated by surgery and chemotherapy. The order of those treatments depends on the stage at diagnosis. If a women is diagnosed late stage - III or IV your doctor may give you chemotherapy, then complete the surgery and then give you more chemotherapy.

Check the sources below for more information and diagrams. 

Tomorrow I will share information on chemotherapy treatments on initial diagnosis.

Dee
Every Day is a Blessing!

Sources:
https://www.cancer.gov/types/ovarian/patient/ovarian-epithelial-treatment-pdq#section/_184
https://www.cancer.org/cancer/ovarian-cancer/treating/surgery.html
http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/treatment-options

Day 12 A Month of Teal : My Ovarian Cancer Tumor Got a Grade?

Yes, your tumor is given a grade.

A pathologist will look at your tumor and fluids (such as ascites) under a microscope and give it a grade.

Most epithelial ovarian cancers are graded as:
LGSC -- low-grade serous carcinoma
or
HGSC -- high-grade serous carcinoma.

For other histologic types of ovarian cancers (see Day 8 post) pathologists assign a grade of 1, 2, or 3. Grade 1 is most like normal healthy tissue. Well-defined or differentiated are other terms you may hear for Grade 1. Grade 2 more cells abnormal than normal. They call this moderately differentiated. And grade 3 which is most irregular or poorly differentiated.  Grade 3 is believed more likely to spread.

Source: http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/stages-and-grades

Dee
Every Day is a Blessing!

Day 11: A Month of Teal- Staging Ovarian Cancer

I took the weekend off from posting. I attended the Kaleidoscope Of Hope Ovarian Cancer Foundation's Morristown, NJ walk on Sunday. It was amazing to see so many people dedicated to raising awareness and funds for research. 

Ovarian Cancer Staging

The staging of ovarian cancer follows an international system called the FIGO (International Federation of Obstetrics and Gynecology) staging system.  Staging usually occurs at surgery.

Stage I: The cancer is only in the ovaries or fallopian tubes.

Stage II: The cancer involves one or both of the ovaries or fallopian tubes and has spread below the pelvis, or involves peritoneal cancer.

Stage III: The cancer involves one or both of the ovaries or fallopian tubes, or peritoneal cancer. It has spread to the peritoneum outside the pelvis and/or to lymph nodes in the retroperitoneum (lymph nodes along the major blood vessels, such as the aorta) behind the abdomen.

Stage IV: The cancer has spread to organs outside of the abdominal area.

These stages may include subsets , such as Stage IIIB . For complete descriptions please see the Cancer.net page. http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/stages-and-grades

or this information from the SGO https://www.sgo.org/wp-content/uploads/2012/09/FIGO-Ovarian-Cancer-Staging_1.10.14.pdf
 

Dee

 Every Day is a Blessing! 

Day 8 A Month of Teal -Types of Ovarian Cancer Tumors

I never realized until the end of my treatment that there were different types of ovarian cancer (OC) tumors. My tumor type,  epithelial ovarian cancer is the most common at 95%.

Epithelial OC tumors come from the surface of the ovary. There are 5 subtypes of epithelial OC.

high grade Serous 70%

mucinous 3%

clear cell 10%

endometrioid 10%

low grade serous < 5%

Germ Cell Ovarian Cancer forms in the egg cells of the ovary.

Teratoma - Mature cystic terotoma, Immature teratoma

Mondermal teratoma

Dysgerminoma

yolk sac tumor

embryomal carcinoma

Choriocarcinoma

 

Sex Cord Stromal forms in the sex cord/ ovarian follicles

granulosa cell

Thecoma

Sertoli

Sertoli-Leydig

Fibroma / Fibrsarcoma

Sclerosing stromal

 

To learn more please visit these sources:  

Pathology and claissification of ovarian tumors 

http://onlinelibrary.wiley.com/doi/10.1002/cncr.11345/pdf

 

New Insights into Ovarian Cancer Pathology

https://academic.oup.com/annonc/article/23/suppl_10/x111/205997/New-insights-into-ovarian-cancer-pathology 

 

John Hopkins Pathology website 

http://ovariancancer.jhmi.edu/typesca.cfm

Dee

Every Day is a Blessing!

 

Day 7 A Month of Teal - Ovarian Cancer Statistics

When I was in treatment in 2005 someone told me to not look the statistics for ovarian cancer because I was a person not a number. But it is important to know the statistics so everyone understands how important research is and why better treatments and ultimately a cure are so important to so many women and their families.
 
An estimated 22,440 new cases of ovarian cancer will occur in 2017, which is 1.3% of all new cancer cases.
     60% of all cases are women with distant disease (metastasized cancer )
     20% of all cases has spread to lymph nodes (regional)
     15% of all cases are found only in the ovary ( localized)
     ~ 6% of all cases are unstaged

Rates for new cases of ovarian cancer has dropped 1.9% each year for the last 10 years.

Ovarian cancer will cause the deaths of 14,080 women in 2017, which is 2.3% of all cancer deaths.

In 2014, 222,060 women were living with ovarian cancer.

The percent of women surviving after 5 years is  46.5% ( 2007-2013)
But the percentage of women varies depending on the stage at diagnosis. ( More on staging tomorrow.)
95% of all women diagnosed at early stage ( localized) disease are alive at 5 years.
73% of all women diagnosed with regional disease are alive at 5 years.
28.9% of all women diagnosed with distant disease are alive at 5 years.

The median age at diagnosis is 63 years.

Source: Seer DATA https://seer.cancer.gov/statfacts/html/ovary.html
Dee
Every Day is a Blessing!

Day 6 A Month of Teal - Reduce Your Risk of Ovarian Cancer

There is no known way to prevent ovarian cancer. 
But there are ways to reduce your risk of ovarian cancer.

Take birth control pills for 3 or more years

Have your ovaries and fallopian tubes removed

Have your tubes tied ( tubal ligation)

Give Birth

Breastfeeding

This information is taken from the CDC (https://www.cdc.gov/cancer/ovarian/basic_info/prevention.htm)and Cancer.net websites ( http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/risk-factors-and-prevention).

If you know you have a genetic mutation that increases your risk of ovarian cancer talk to your doctor about risk reducing surgery. You may also want to talk to a genetic counselor about your risks. Check the National Society of Genetic Counselors page for more information. http://aboutgeneticcounselors.com/

Dee
Every Day is a Blessing!

Day 5: A Month of Teal - Ovarian Cancer Risk Factors

1 in 75 women develop ovarian cancer 

Risk factors for epithelial ovarian cancer ( the most common type) include: 

• Increased Age 
• Genetics :  BRCA 1 or 2 Mutation, Lynch Syndrome, Peutz-Jeghers syndrome, Nevoid basal cell carcinoma syndrome, Li-Fraumeni and Ataxia-Telangiectasia (http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/risk-factors-and-prevention )
• A family history of epithelial ovarian cancer, fallopian tube cancer, peritoneal cancer, premenopausal breast cancer and/or male breast cancer
• Endometriosis
• Being of Ashkenazi Jewish heritage
• Being post menopausal
• Infertility, never having children
• Obesity
• Using menopausal hormone therapy

For more information please see:
https://ocrfa.org/patients/about-ovarian-cancer/risk-factors/ 
http://www.cancer.net/cancer-types/ovarian-fallopian-tube-and-peritoneal-cancer/risk-factors-and-prevention


Dee
Every Day is a Blessing! 

Day 4: A Month of Teal - You Experience Symptoms. Now What?

Yesterday I wrote about symptoms. What if you have those symptoms? What do you do?

I recommend reaching out to your gynecologist for an appointment. Be sure to mention the severity and duration of the symptoms you feel. The gynecologist will most likely:

• do a PAP test ( if you haven't had one )
• perform internal pelvic exam
• get your family history ( let her know about any breast, ovarian, colon  cancer in your family - both mother and father's side). Ovarian cancer and breast cancer have a hereditary link (BRCA mutations) as does colon cancer ( Lynch Syndrome).
• if your doctor has concerns she may send you for a transvaginal ultrasound and also run a CA-125 blood test. 

 For graphics of the pelvic exam and transvaginal ultrasound mentioned above please see this page ( https://www.cancer.gov/types/ovarian/patient/ovarian-screening-pdq#section/_12)  on the NCI website.

If your results show the possibility of ovarian cancer please ask for a referral to see a gynecologic oncologist. Studies have shown that women treated by gynecologic oncologists have better outcomes. See The Relevance of Gynecologic Oncologists to Provide High-Quality of Care to Women with Gynecological Cancer for more information - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712269/ .

Dee
Every day is a Blessing!

Day 3 - A Month of Teal - There ARE Symptoms!

Yesterday, I wrote that there is no screening test for ovarian cancer. Since that is the case every woman and her loved ones should be aware that there are symptoms of the disease.

Bloating

Feeling Full Quickly

Pelvic Abdominal Pain

Frequent Urination

Less common symptoms include:

Fatigue
Back pain
Menstrual irregularities
Constipation
Pain with intercourse

If these symptoms last for more than two weeks please see your gynecologist.

Source: http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/ovarian/symptoms/

Dee
Every Day is a Blessing! 

A Month of Teal- Is there a Screening Test for Ovarian Cancer ?

NO !
There is no screening test for ovarian cancer.

You may have heard about the CA-125 blood test. This test is not specific enough to be used on the general population to detect ovarian cancer.

You can learn more about CA-125 by reading this newly updated brochure, CA-125 Levels: Your Guide  by the Foundation for Women's Cancer.

The PAP test does not screen for ovarian cancer - it screens for cervical cancer.

Dee
Every Day is a Blessing!