Friday, August 4, 2017

#FF follow the #HIT100

I had heard about the #HIT100 a few years ago. Each summer people in the health care social media community on Twitter are asked to nominate their peers who are active in various aspects of healthcare information technology. Some are entrepreneurs and journalists while others are researchers and physicians and policy makers yet they all share information of value with the community.

Imagine how I felt when a tweet showed up in my notifications that I was choosen along with fellow #gyncsm Twitter Community co-founder/co-moderator Christina Lisazo, as one of  2017's #HIT100. To be named along side of  Colin Hung (@Colin_Hung), Regina Holliday (@ReginaHolliday),   Marie Ennis-O'Connor ( @JBBC), Mandi Bishop (@MandiBPro) and others is a true honor. 

You can find the complete list here
http://www.emrandhipaa.com/emr-and-hipaa/2017/07/28/our-final-2017-hit100-list/


Since today is # Follow Friday I recommend that you take a look at this list and pick a few of these individuals to follow. You won't be sorry.

Dee
Every Day is a Blessing!

Friday, July 28, 2017

XII years

When I attended the Cancer Support Community of Central New Jersey's Wings of Hope event in June, I spent some time at the table for cancer survivors. There is a Japanese tradition that 1000 cranes will bring you luck. So survivors were able to string together origami cranes to celebrate our years of survivorship. I stood that day in a light rain stringing together my cranes.


WINGS OF HOPE 2017 -12 CRANES

Tomorrow (July 29, 2017) will mark the 12th anniversary of waking up from surgery and hearing,"You have Stage 3B Ovarian Cancer."

It is still hard for me to believe it has been that long.  When I was first diagnosed, even though I was told to not read the survival statistics, I did. I wasn't so sure I would make 5 years (30%).

When I recurred in 2008 I thought for sure I would never rid my body of the cancer. Yet, I did, due to the skills of the  amazing surgeons, gynecologic oncologists and nurses at the Rutgers Cancer Institute of New Jersey and the love and support of family and friends and other reasons I don't know. 

I am especially grateful for my husband, my children and their spouses, my grandsons and countless family and friends for their love and support these past twelve years. You have provided me with the best memories anyone could ask for. Thank you all.

Looking forward to blogging about my "cancerversary" for many years to come. 

Dee
Every day is a Blessing! 

Monday, July 24, 2017

That Feeling You Get When You Hear the Word Cancer

The other day, a women in one of the ovarian cancer Facebook groups, asked the group "How did you feel when you heard the words - You have Cancer?".

As I approach my "cancerversary" I thought I would share how I felt when I heard those words.

I had been referred to a Gynecologic Oncologist after I told my gyncecologist at my annual visit about pain in my left abdomen and an MRI showed my ovaries were enlarged. I was just shy of my 50th birthday and I thought at the time perimenopausal. 

Leading up to my gyn onc's recommendation that I have surgery we talked about what could be causing the enlarged ovaries. Yes, she did tell me about the possibility of it being ovarian cancer but at the time I thought if I would get a cancer it would be breast cancer. My sister had been diagnosed with breast cancer in the the late 1980's. At the time I didn't know about the BRCA mutation connection between breast and ovarian cancer or much about ovarian cancer at all. But I did have a family  history of cancer.  My mother, father, aunt, and uncles in addition to my sister had received a cancer diagnosis. So it  made sense that I could have cancer. Yet somehow at the time I thought that this was NOT going to be my diagnosis.  Or maybe I didn't want to think about having to deal with the treatments that would certainly follow my surgery.

When I woke up from surgery and heard the words you have Stage 3 ovarian cancer I said "OK" and then I told my gyn-onc that I didn't want my treatments to disrupt my family's life. I wanted them to continue with their lives - school, hobbies, work. That was the first thing I thought of. Maybe it was the anesthesia that numbed me to what I had just heard. When I got transferred from recovery to a hospital room and my family had all gone home for the night that is when it hit me.

Oh my God, I have CANCER!

I was laying down in bed at the time, still pretty drugged up and not really able to move much at all.  I felt a strange sensation of my legs feeling weak. I don't know if I would have actually collapsed if I had been standing since I have only felt it when I was already sitting or laying down. I was always alone and it was late at night. I felt it when I let my mind wander to that space where I considered that this cancer would kill me. I have described it to others as my Weak in the Knee reaction.

There was so much I didn't want to miss and so many things I needed to do and experience. I wouldn't be there when my children married.I wouldn't see my son graduate college.  I wouldn't meet my grandkids. I wouldn't visit all 50 states.(I had 21 more states to visit at the time.)I'd never get to visit Australia or Europe.  I wouldn't be doing any of this. Then I thought of my family. What would it be like for my husband and children? Emotionally, I was despondent.

While I can remember how I felt, it is hard for me to remember how I was able to recover from the Weak in the Knee feeling or what prompted me to become more hopeful. I know I began using a mantra to stay calm during all those medical scans but I don't recall when I started using it. Maybe the sun came up.  And with the start of a new day, I became hopeful.


If you were diagnosed with cancer, how did you feel? Physically? Emotionally?

I will sign off as I always do, 

Dee
Every Day is a Blessing!

Wednesday, June 28, 2017

Research in Your Backyard - NJ

PhRMA ( the Pharmaceutical Research and Manufacturers of America) released their report on clinical trials in NJ today. Research in Your Backyard: Developing Cures, Creating Jobs, Pharmaceutical Clinical Trials in New Jersey (RIYB)was presented at a Roundtable event co-hosted by the  HealthCare Institute of New Jersey (HINJ)  and We Work for Health NJ (WWFH-NJ) at Rutgers Cancer Institute of New Jersey.  I attended the event and was honored to share my experience with clinical trials with those in attendance. 



Below are highlights from the report presented by Emma Van Hook, Directory of Policy & Research, PhRMA :
  • Since 2004 there have been 4,967 clinical trials completed in NJ. 
  • There were 314 cancer clinical trials during that time period. 
  • 25,127 New Jersey patients participate in clinical trials around the state, generating $617 million in economic growth.
  • The average cost of developing a new drug is ~ 2.6 billion dollars. 
  • Half of the cost of developing drugs ( ~$1.3B) is clinical trials.  
  • The biopharmaceutical industry supported more than 378,000 jobs in NJ.
For more report details please see: http://phrma-docs.phrma.org/files/dmfile/RIYB_New-Jersey_2017.pdf

Dean Paranicas, President and CEO of Healthcare Institute of New Jersey shared information on the biopharmaceutical industry in NJ.
  • New Jersey is home to more than 3000 life sciences companies. 
  • Thirteen of the top 20 research-based biopharmaceutical companies in the world are headquartered or have a significant presence in NJ. 
  • There is a long history of collaboration between local academic and health care institutions in the state.
  • It takes 8-12 years to develop a drug, complete clinical trials and receive FDA approval.
  • 12% of drugs that start the development process are successful.
You can find additional information at http://hinj.org/life-sciences-new-jersey/by-the-numbers/

Additional speakers included Michele Sharr, Director, Oncology/Hematology, Celgene Corporation who spoke on Industry Research in NJ and Shridar Ganesan, M.D., Ph.D., Associate Director for Translational Science and Chief, Molecular Oncology, Rutgers Cancer Institute of New Jerseywho spoke about A View of Academic Research in NJ.



"Clinical trials are beneficial to patients, the economy and science. "- RIYB
I have been blessed with almost 12 years of survivorship and participating in clinical trials has been an important part of the survivorship.

Dee
Every Day is a Blessing!

Thursday, June 22, 2017

Our Way F>>ward - Survey Summary

Between April and May of 2017 a survey was conducted online on behalf of TESARO, Inc. by the Harris Poll. This One Way Forward survey included 254 women living with ovarian cancer and 232 physicians who treat ovarian cancer patients. The survey was developed with input from OCRFA and NOCC.


Here are some highlights from the survey:

  • 53% of the women said their diagnosis had a severe or very severe impact on their lives.                                                           
  • 87% of the women who had experienced a recurrence said the thought of cancer returning was overwhelming 
  • 34% of the health care providers were unsure if or did not feel that they give their ovarian cancer patients all the information they need  about Ovarian Cancer

Most interesting to me was the survey results when it came to communication.

  • 91% of health care providers said they discuss expectations of treatment often or at every visit while 40% of the patients reported they had the discussion.                                                      
  • 69% of health care providers said they discussed recurrence often or at every visit while  38% of the patients said they discussed recurrence often or at every visit.


It appears that we have a ways to go to make sure patients have the information and support we need, when we need it most. 


You may find additional information on the website https://www.ourwayforward-oc.com/

Dee
Every Day is a Blessing! Thank you TESARO for researching the needs of the ovarian cancer community.  

 

Monday, June 5, 2017

#ASCO17 Twitter Highlights

I was not able to attend this year's ASCO Annual Meeting in Chicago so instead I followed the latest oncology news from the meeting via Twitter (#ASCO17).  I appreciate all the attendees who used the #gyncsm hashtag too.

Below find the tweets I found most interesting in the areas of gynecologic cancers, social media and survivorship.

Let's start first with how to read cancer related news:
Patient Reported Outcomes Leads to Improved survival
Impact of HPV vaccinations:

PD-1 Pathways in Gynecologic Cancers: 


Progress in High Grade Serous Ovarian Cancer:

Liquid Biopsy

Parp Inhibitors in Ovarian Cancer:

Resection of Recurrent OC:

ICON6:
"ICON6 is designed to evaluate the safety and efficacy of platinum-based chemotherapy in combination with cediranib in women with platinum-sensitive relapsed ovarian cancer . Cediranib is an oral targeted small molecule inhibitor of a key signalling molecule Vascular Endothelial Growth Factor (VEGF) which is an oral inhibitor of tyrosine kinase (TK) activity and acts through blockade of the TK receptor. Cediranib (AZD2171)" source :http://www.icon6.org/


OC risk reduction w/ BRCA mutation:


BRCA testing - ovarian cancer:


Endometrial Cancer and Genetic Testing:
Homologous Recombination Deficiency:

Germline Testing:

Abstract 1524 http://abstracts.asco.org/199/AbstView_199_187114.html

from this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048908/

Immunotherapy:

Screening for OC:


Fallopian Tube /Ovarian Cancer:

Based on this study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048908/

Social Media:

session description- https://iplanner.asco.org/am2017/#/session/12030
 
Li-Fraumeni Syndrome:

Cost of Care:


I hope I'll get the opportunity to report live from ASCO 2018.

Dee
Every Day is a Blessing!

Wednesday, May 31, 2017

When News Triggers That Old Fear

By now most people have heard that Olivia Newton-John's breast cancer has returned this time in her lower back. (USA Today) It has been 25 years since her initial diagnosis. Breast cancer metastasizes and it is not unusual for women to be disease free for five, ten, fifteen years and have the disease return. There is a organization METAvivor whose focus is to do just that and to support women who are living with disease. 

Did you know that Ovarian Cancer can recur - months and years later? I know women who have dealt with single recurrences and some with multiple recurrences. Some women are in constant treatment just like those with metastatic breast cancer.

Yes, there are new drugs being developed to treat the recurrences and target specific mutations but just like with breast cancer, more research is needed. But being diagnosed with a disease that can recur at any time brings along with it other issues to deal with too.

My first reaction to hearing about Olivia Newton-John was sadness and then the fear took hold. I could feel that strange tightening in the pit of my stomach. And then my thoughts took off to a place that I try very hard to keep in check. Damn. I could recur at any time.

I've been really tired lately.  ( Could be my allergies.)
My lower back started hurting a few days ago. ( Could be bending to pick up my grandsons.)
My digestive system still isn't right since the stomach bug I had two weeks ago. ( Could just be it is taking that long to clear up.) 

I take a deep breath. And then another and finally slowly get hold of myself.  I know that my gyn onc will see me in a few months for my regular check-up. I know that if these symptoms continue for two more weeks I can always give her a call and see her early. Alright I have a plan. Once I have a plan I am good.

Being disease free is not being worry free. That is a side effect that can come on at any time.
How do you handle your fears of recurrence?  


Dee
Every Day is a Blessing!