Saturday, July 28, 2018

13 years? Yes it is.

I remember waking up from surgery on July 29th, 2005 to the words " You have stage 3B ovarian cancer". And then the words," I will do everything to make you well".

My life changed with those few words in so many ways. If you have followed this blog since 2007 you know that it hasn't always been easy. But I have made it through with the help of my outstanding physicians and nurses at Rutgers Cancer Institute of New Jersey,  the help of my best friend and husband Nick, the support of my children and their spouses, the love of my grandsons, supportive family and some of the best friends anyone could ask for.

Have there been side effects? Sure. Do I still have neuropathy in my toes? Yes. Do I still experience chemobrain? Yes. If I am multi-tasking my word recall diminishes dramatically which at times could lead to a few good laughs. Have I had some really stressful times? Absolutely. To this day, about a week before my scans and blood work, until I hear my test results, my anxiety level goes through the roof. Does my mind still go to cancer whenever I have an ache or pain? Honestly, even now, yes it does. Does it stay there for long? Usually not. 

But most of the time I am having fun living my life and trying new experiences. How can cancer bring you good things you ask? For me, having an ovarian cancer diagnosis lead me to become an ovarian cancer research advocate. I have been able to take part in projects to increase cancer research funding. I've attended medical conferences as a voice for ovarian cancer patients. I  have traveled to Chicago, Maryland, Washington, DC and Lisbon. I've been a panel member for three ASCO Guidelines, and co-authored a book and journal articles. ( And another one is in the works.) And I have met so many amazing patients, physicians, researchers and writers along the way.

And these extra years have let to new experiences too. There have been weddings, graduations, births and trips to some spots on my bucket list. I started painting when I was in chemotherapy and I continue to find it a very calming activity. I paint mostly animals - dogs usually but a few cats and birds too.  And I love painting quilts ( I'm not so good at sewing quilts but love the symmetry in the designs. ) After my recurrence, I learned how to do agility with my dog, Amber.  I'm not fast - Amber is- but I love spending time with Amber and being around people who love their dogs.

So thanks for taking this journey with me. And now a special shout out to Dr Lorna Rodriguez and Dr Darlene Gibbon. My life savers for making this all possible.

Dee
Every Day is a Blessing


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Friday, July 20, 2018

Blogs and A Decision

For the past few weeks I have spent most of my time with my children and grandchildren. It was a fun time swimming and exploring new things, drawing and creating things with them. Now that they have headed to their new home, I have time to get back to writing posts for this blog. But I had a problem. What do I write about? Seems that for the past week I have had "bloggers block". 

Then yesterday, in a Facebook group I belong to, I ran across a post by a women with ovarian cancer who shared a link to her latest Cabernet and Carboplatin Blog post "Identity". As I read the post I could relate to how she was feeling and I loved how Carol wrote. I thought to myself that her blog would be a great one to add to the list of ovarian cancer blogs I created on Listly.ly (https://list.ly/list/NRQ-gynecologic-cancer-blogs ). There is a link to the list in the right column of this blog. 

The list I created a few years ago includes blogs written by women diagnosed with ovarian cancer or their loved ones. It does not include single blog posts by patients, survivors or caregivers appearing on other independent, patient or awareness organization websites. It had been so long since I did an update that I had to look up the password to access the list.  I added Cabernet and Carboplatin. Then I "googled" ovarian cancer blogs and found two other blogs that I was not familiar with but liked the posts I read. So I added these blogs written by young women, Finding Cyril - The Musings of a Young Woman Diagnosed with Ovarian Cancer and Let's Kick Ovarian Cancer - A Journey with Ovarian Cancer at Age 26 , to my list.

After making the adds I started going through the list. Afew of my survivor friends, including a few from the UK are still writing.  Then I found a few blogs in a row where new posts haven't been made for over two years. Why did these women choose to stop writing their blog? In one case I am friends with the woman on Facebook so I know she is doing OK. But in many of the other cases the last post related to decisions about hospice and facing death or posts from family members. I was overwhelmed with sadness that after so many years so many women's lives are still  lost to ovarian cancer.

Now I am in a quandary. Do I leave those blogs where women haven't posted in a number of years? Or do I delete those blogs from my list?

Then I thought about my "On this Day"  that showed up this morning on Facebook.

Eleven years ago my friend Courtney had posted:

"Hey Dee... just wanted to say hello and thank you for the cards you've sent my way. They've made me smile :) Hope you're having a good summer! "

She passed away in 2011, yet this morning I read that memory and I smiled and thought how blessed I was to have known this dynamic and amazing young woman. 

So for now I will be leaving those blogs in my list. My way of never forgetting the women whose journey ended but who lives blessed so many of us.

Every Day is a Blessing!

Dee



 
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Sunday, June 17, 2018

Healing Hope and Survivorship

Last weekend, I attended the 2018 Rutgers Cancer Institute of New Jersey's Survivor's Day. Over the past 10 years, I have attended a number of Survivor Day events and heard many wonderful advocate/speakers from Valisia LeKae to C Vivian Stringer to Bruce Feiler.



This year the keynote speaker was survivor, physician and cancer advocate Wendy S. Harpham (http://www.wendyharpham.com/). During her keynote speech I found myself shaking my head in agreement. You see she was talking about hope - Healing Hope in particular - an  how we can be healthy survivors. 



Many of the points she made were part of her latest book- Healing Hope Through and Beyond Cancer. As part of the day, we were each given a copy of the book to take home. The book includes graphics to describe each topic.

Over the past few days I have been working my way through the book. This page, Don't Wait and See ... Live and See, is one that I felt really spoke to those of us survivors who worry as we wait for scan results.




"I have today.While waiting for news or anything else I'll live and see"


Great advice!

 If you are a survivor or a caregiver I strongly recommend that you purchase a copy. You can find it on Amazon by visiting here.

 Dee
Every Day is a Blessing!
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Tuesday, June 5, 2018

#ASCO18 Twitter Highlights June 4, 2018

Many gyn cancer research topics as well as survivorship issue  were covered on Monday at the ASCO Annual Meeting.

If you were at the meeting and think I missed any important developments please share a link to it in my comments section below.

Genetics / Genetics Counseling




Risk Reducing Surgery




CA-125


Endometriosis and Cannibis Treatment
Mindfulness

Neuropathy


Patient Reported Outcomes- Pain
Enodmetrial Cancer- Posters

Ovarian Cancer - Posters

Fertility Preservation

Metformin in Cancer Treatment

HIPEC

Palliative Care

Recurrent Ovarian Cancer

Neoadjuvant Chemotherapy - OC

 Further details may be found at 
https://meetinglibrary.asco.org/record/160515/abstract

Cediranib and Olaparib for recurrent OC
Further info may be found at
https://meetinglibrary.asco.org/record/160525/abstract


Thank you to all the researchers , advocates, and cancer centers who tweeted from this year's Annual Meeting.

Dee
Every Day is a Blessing!


 
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Monday, June 4, 2018

#ASCO18 Twitter Highlights June 3, 2018

What do you do on a windy, cloudy, raining Sunday in NJ?
Follow tweets from the ASCO of course.

My Twitter news stream was filled with comments on these two non-gyn cancer studies.

Breast Cancer -
The Adjuvant Chemo and 21 Gene Expression Assay study reported at ASCO by Dr J Sparano may be found in this NJEM article https://www.nejm.org/doi/10.1056/NEJMoa1804710.
"Investigators “found that gene tests on tumor samples were able to identify women who could safely skip chemotherapy and take only a drug that blocks the hormone estrogen or stops the body from making it.” From the ASCO Cancer in the News e-mail  .

Lung Cancer - Keytruda Study (Pembroluzimab)
Keytruda "boosts the immune system outperforms chemotherapy in fighting advanced lung cancer, a new trial shows. Keytruda (pembrolizumab) extended life four to eight months longer than chemotherapy in lung cancer patients whose immune systems had been duped by their cancer cells.
"This trial shows that pembrolizumab used alone improves survival as opposed to chemotherapy," said lead researcher Dr. Gilberto Lopes, a medical oncologist with the Sylvester Comprehensive Cancer Center at the University of Miami Health System." From HealthDay / ASCO Cancer in the News e-mail.
https://consumer.healthday.com/cancer-information-5/lung-cancer-news-100/cancer-drug-keytruda-a-new-weapon-against-advanced-lung-tumors-734492.html


Now on to the gyn Tweets/ Studies.
OVARIAN CANCER :

Keynote - niraparib and pembrolizumab
(Median duration response rate of 9.3 months)
 

Vaccine Trial


Genetic Testing

HPV / Cervical Cancer

Immune environment
Trial Design


 Communication

Cancer Prevention

Will check into the #gyncsm and #ASCO18 tweet streams a few times today to catch more news from the meeting. If you are there feel free to use those hashtags or tag me @womenofteal in your posts.

Dee
Every Day is a Blessing!
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Sunday, June 3, 2018

#ASCO18 Twitter Highlights June 1 & 2, 2018

What does the first weekend in June mean for oncologists and cancer researchers throughout the world? It means it is time for the  ASCO Annual Meeting in Chicago. I was not able to attend the ASCO Annual Meeting in person this year so I am following the tweets my friends who are attending are sharing.  I was able to take part in a Guideline meeting held at the Meeting on Saturday afterbiib via Webex. So I was there in a sense.
As i the past I will be following the meeting via tweets by doctors , researchers and advocates who are attending. It is not as much fun or exhausting as being there in person but it allows me to keep up to date on the latest results. I'll share the Tweets I found most interesting in the next few blog posts.

I also have been getting e-mail updates from ASCO regarding breaking news and important topics from the meeting. Below the tweets you will find some articles from the ASCO Daily News and ASCO Post that you may find of interest.

First the Tweets:

MATCH TRIAL
Lynch Syndrome:

Survivorship
Endometrial Cancer

Clinical Trial Participation:

ASCO POST or DAILY News Articles:

Lynch Syndrome:
www.ascopost.com/News/58898

Patient Communication:
https://am.asco.org/addressing-patient-communication-challenges

Patient Survivorship Care:
https://am.asco.org/patients-moderate-severe-anxiety-or-depression-symptoms-recognizing-assessing-referring-and

IMPACT Trial :
http://www.ascopost.com/News/58897?email=865aa94a58f0b27b9edd2aa71d80e9a99b924971f7ce90316a0d742b2e9c9b1c

Patient Education and Quality of Care:
https://am.asco.org/patient-education-essential-element-quality-cancer-care
Economics and Value Discussion:
https://am.asco.org/bringing-economics-back-value-discussions

I'm looking forward to the next few days when there will be a greater emphasis on Gynecologic Cancers.

Dee
Every Day is a Blessing!



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Friday, May 25, 2018

2018 Annual Retreat on Cancer Research in NJ - Public Forum focus on HPV Cancers

Yesterday,  I attended this year's Annual Retreat on Cancer Research in NJ. I usually attend the Public Forum only but this year I registered for the entire day. This gave me the opportunity to network with more researchers during the poster sessions  listen to the keynote given by Dr Doug Lowy (Deputy Director of the NCI) and listen to my gynecologic oncologist present research on precision medicine and disparities in Latino populations.

Here are some highlights of what I found most interesting:

Public Forum
Preventing HPV Related Cancers: Advances and Challenges

Welcome and Overview - Dr Epstein
  • Cervical Cancer is a worldwide problem.
  • In Australia , they have an 83% vaccination rate of young girls which has lead to a decrease in cervical cancer diagnosis. 
  • In the UK , all 12 year old girls get vaccinated in school. 
  • In the US, only 40% of the girls eligible to be vaccinated are. National Goal is 80%. 
  • "HPV should be considered a routine vaccination." 
HPV Related Cancers in Sexual Minority Men: Missed Opportunities for Prevention - Drs Halkitis and Kapadia
  • Sexual minority men with HIV are at a higher risk for HPV.
  • "Poor people have poor health outcomes." 
  • Frank discussions about sexuality are needed.
  • In a cohort study for HIV in men they looked at HPV vaccination rates and found vaccination rates for HPV were low. 
  • Direct messaging of the signs and symptoms of anal cancer are needed

HPV Vaccinations for the Low Income and Uninsured Populations in New Jersey - Dr Tsui
  • There is no mandate in NJ to have young girls and boys receive the HPV vaccination. 
  • Only 45% of young girls who get TDAP vaccination get the HPV vaccination. 
  • Northern counties of NJ have lower vaccinations rates the the rest of the state. 
  • With programs to assist those without insurance to get health care services has led to young girls 11-12  without insurance to have higher rates of HPV vaccination that those with medicaid or insurance. 
  • The vaccination requires 2 doses ( 2 visits) and many are not returning for 2nd dose. 
 Keynote
 Preventing HPV Associated Cancer Through Vaccination and Screening - Dr Lowy
  • 70% of vaginal and vulvar cancers are due to HPV
  • The HPV test detects HPV but many women will not need treatment or develop cancer.
  • It takes years from HPV infection to develop into cervical cancer. 
  • Cervical cancer  develops in women who are HPV + and their  infection does not clear. 
  • Costa Rican study showed level of antibody sufficient from single dose of vaccine ( 7 yrs). Trial of 2 vs 1 dose is ongoing now in Costa Rica.
  • Poor countries use an ascetic acid screening test.   
  • Studies confirm the HPV vaccination is safe. Article reporting dangers of vaccine has been retracted. 
My take away from listening to these HPV focused talks:
We have a foolproof way of preventing cervical cancer - and other HPV cancers ( anal, vaginal, vulvar, throat cancers)
We need to better educate parents on the benefits of the HPV vaccine as a cancer preventer.
We need to better equip pediatricians, PCPs and family physicians with tools to have the conversation regarding the vaccine to insure that young girls and boys are getting vaccinated.


Interested in learning more about HPV ad the vaccine?
Check these resources
https://www.cancer.org/cancer/cancer-causes/infectious-agents/hpv/hpv-and-hpv-testing.html

https://www.cancer.gov/types/cervical/pap-hpv-testing-fact-sheet


Dee
Every Day is a Blessing

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