Monday, April 14, 2014

Of SGO and AACR

SGO

The Society of Gynecologic Oncologist held its annual meeting in Tampa in March. There were a number of studies whose results were presented that are of interest to ovarian cancer patients. The SGO also issued a clinical practice statement recommending genetic testing for all women diagnosed with ovarian cancer and endometrial cancers. The #gyncsm(gyn cancer social media)  chat ( of which I am co-moderator) discussed SGO News during their April 9th Chat. To see the topic questions, read the transcript of the chat or refer to the resources presented during the chat,  please see their blog page. If you want to read through the abstracts from the meeting please visit https://www.sgo.org/wp-content/uploads/2014/03/ABSUPP_3.14.14.pdf

This Foundation for Women's Cancer video shares news from the meeting.



The American Association for Cancer Research  held their annual meeting early this month in California. While this annual meeting presented research for all cancers there were a number of interesting studies related to ovarian cancer. ( Search abstracts here.) A prospective study of of over 14,000 women in the Child Health and Development study found an association between irregular menstrual periods and the diagnosis of serous ovarian cancer . In  Irregular Menstruation May Predict Increased Risk of Death From Ovarian Cancer.  published online by AACR, 

“It is notable that the 2.4-fold increase in risk of ovarian cancer death we observed for women with irregular/infrequent cycles in this study is close to the threefold increase in risk observed for women with a family history of ovarian cancer in a first-degree relative,” explained Cohn. “Our study finding could lead to better understanding of the 90 percent of ovarian cancers that occur in women with no family history of ovarian cancer and with no known high-risk inherited mutations.”

The results were independent of race, age or weight. I know that my menstruation was very irregular when I was young and again about 5 years prior to my diagnosis. 

It may be too soon but I wonder if irregular menses needs to be added to our discussion of symptoms of ovarian cancer.   

Dee
Every Day is a Blessing!


Monday, April 7, 2014

Stay the Course

For the past two weeks time seems to have been flying by. We are having some painting done in our home so my normal routine and place I work on the computer has been disrupted.

Most of my time was spent reviewing grants/ proposals  for two organizations. Some of the proposals are on subjects other than cancer so I needed to take extra time to do the review. I am learning a tremendous amount though I still experience issues with remembering what I just read. If I read one proposal and wait till the next day to write my final review I have to go back and reread the information. Then my reviews were reviewed and suggestions for rewrites were send . Even with pages of notes that I took as I read about the research I still needed to reread ( now for a 3rd & 4th  time) the sections where changes were suggested.  A bit frustrating to say the least but I got through it all. I understand that if you  "exercise" your brain, the cognitive impairment - "Chemo brain" will get better.

If you are an advocate for cancer or diabetes or heart disease or autism or any health related issue look for opportunities to share your experience / knowledge as a grant reviewer. It is hard work but a great experience and many organizations are looking for the voice of the patient or caregiver in evaluating grant proposals.

I also worked on an application for a scholarship to the ASCO annual meeting in Chicago. Of course my brain tricked me again and I thought I had read I had till Thursday afternoon. So I thought I would just shoot it off after I came home from my port flush on Thursday. Well, when I went to the original packet of information to find the e-mail address to send the app to I read the time the app was due was 11:59 am . I missed the time by less than an hour. I was disappointed in myself but I figure I will try next year.

The good news is that my application to attend the Biennial Cancer Survivorship Research Conference in June was accepted. I am honored to be attending this conference in June and look forward to sharing what I learn on Twitter and this blog.

I did spend some time having fun too. I took part in a class last Monday my community held called  Art Journaling. What a fun time we had at this class taught by local artist and children's book author, Dar Hosta. I love to take the time to be creative.


Dar wrote about our class in her blog "Monday #33:Fun Shows"

So even though it has been busy and I don't post every day,  I "Stay the Course" and continue to share with all of you.

Dee
Every Day is a Blessing! Blessed to share time with my neighbors being creative.

Sunday, March 23, 2014

Upcoming Awareness and Fundraising Events

I am busy doing grant reviews so I apologize for the lack of posts the past week or so. I hope to start up posting more regularly shortly.

In the mean time here are some great events you might want to participate in this spring to help raise awareness of ovarian cancer or to raise funds for research.

Teal Tea Foundation Events: 
Click on the image for more details or visit  https://www.tealtea.org/events for ticket information. 


Saturday, March 29 – Guys & Dolls Bingo
Elks Club, Morrisville, PA

Sunday, April 13 – Zumba Party!
East Brunswick Jewish Center
East Brunswick, NJ




Sunday, May 4, 2014 – 8th Annual Teal Tea
John Henry’s Stone Terrace
Hamilton Township, NJ 



NOCC Northern NJ Events:
For more info contact Barbara Geiger at northernnj@ovarian.org

April 7, 2014 
Cloverleaf Fundraiser

June 6, 2014 
NJ Jackals Baseball Game 




Sandy Rollman Ovarian Cancer Foundation Events:
For more information please visit http://www.sandyovarian.org/events-calendar/ 

April 26, 2014

10th Annual Sandy Sprint 5k/10k Superhero Run/Walk

Philadelphia Museum of Art

June 14, 2014

2nd Annual Teal Leisure Olympics

Mermaid Lake; 1002 Jolly Road, Blue Bell PA 19422




Hope you have fun at these events!

Dee

Tuesday, March 11, 2014

Putting It Away

When I was first diagnosis with ovarian cancer in 2005 my cancer center gave me a binder with sections set aside for reports, treatment information, test results and insurance. The initial binder was 1 inch wide. Before finishing treatment, I had to buy a larger 2 1/2" binder to hold all the papers I was collecting. I took it with me to every gyn-onc appointment, treatment appointments, port flushes, PCP visits, CT scans, PET scans and hospital stays. In between the times it was out and about with me, it would sit next to the dresser in our bedroom. When I finished treatment I took out a majority of the papers that related to treatment and put those in a manila folder in my file cabinet.

When I recurred in 2008 I added pocket pages to the binder to hold the CD's that I asked for every time I had at CT scan and to hold the graph print out of my CA-125 results . Did I ever tell you that I keep track of my CA-125 results on a Excel spreadsheet? Well I do and I even create line graphs so that I can see the slope of the line created by my results. Nerdy? I know but I find it comforting to watch the line level off. And once again the binder went everywhere with me.  Halfway through treatment I had to buy a new binder when the cover broke off. When I visited my son, I bought a maroon Virginia Tech binder. I also found a pretty way of transporting that binder back and forth to all my visits, inside a Vera Bradley Tote. After finishing chemo I once again  removed the treatment papers and put them in another manila folder in my file cabinet.

When we moved to our new home the tote came with me and took its place next to the dresser in our new bedroom. I continued to bring the binder and tote to each and every follow-up visit.

Today, almost 5 years since finishing treatment for my recurrence I took that trusty binder and tote and put it in the closet. I won't need it until August.

Dee
Every Day is a Blessing!

Thursday, February 27, 2014

Research News : Aspirin and Oophorectomies

ASPIRIN

Feb 6,2014 Journal of the National Cancer Institute

Chronic inflammation has been shown to increase the risk for cancer.Aspirin is known to possess  anti-inflammatory properties. Using data from 12 large epidemiological studies (8000 women with ovarian cancer and 12,000 without the disease) researchers at the NIH studied whether aspirin, non-aspirin NSAIDs (non-steroidal anti-inflammatory drugs) or acetaminophen had a lower risk of ovarian cancer.


Conclusion:  Daily use of low-dose aspirin was found to reduce the risk of ovarian cancer by 20-34% depending on the dose and frequency. The same low dose aspirin regime has show Cardiovascular  benefits.


My Take: Further prospective randomized studies are needed to verify this research.
There are risks to taking aspirin such as gastrointestinal bleeding but this may be a readily available low cost was to reduce a women's risk for ovarian cancer. .


OOPHORECTOMY 
Feb 24 Journal of Clinical Oncology

This study included over 5000 women with BRCA1 & 2  mutations who had their ovaries removed. The goal of the research was to estimate the reduction in the risk of developing ovarian, fallopian and peritoneal cancers by the age the women had their ovaries removed.The study also looked at the impact the surgery had on the women's mortality. 

Conclusion: Preventative oophorectomy in women with BRCA1 mutations reduces the risk of ovarian cancer by 80%. The study also found a 77% reduction in deaths by any cause by the age of 70 when women had the surgery. 

Recommendation: Women with BRCA1 mutation should  have their ovaries removed by age 35.  Waiting to a later age for the surgery increases the risk of being diagnosed with ovarian cancer. 

My Take: This study verified the importance of ovary removal at age 35 for women who carry the  BRCA1. Having to deal with menopause at an early age is not easy but women who are BRCA1 should discuss this surgery with their doctors . 


Notes:  Risk is the chance a person has of developing cancer over their lifetime. The risk of a woman developing ovarian cancer is 1.37 or 1 in 73 women. Data from ACS.


Dee
Every Day is a Blessing!

Friday, February 21, 2014

Not for Six Months

Yesterday, I had an appointment with my gynecologic oncologist. It was originally scheduled for last Thursday but my cancer center was closed that day due to the snow storm .

My Gyn-Onc always starts her appointments with asking how I feel and how my family is doing. She asked to see photos of my grandkids, so out came my iPhone and of course I shared the good news that my son had gotten engaged. She was so happy to hear the news and to see the photos. Then the conversation turned to the blog post I had written for the SGO blog. We both agreed that I would not be the advocate I am today if she hadn't recommending that I apply to attend the LiveSTRONG Survivors Summit back in 2006. Yes,  she is ultimately to blame for all this blogging.

Then we got down to business. First we talked about how my CA-125 had dropped back down to 13 from 21 back in October. I had been a bit worried that the results might continue going up instead of down, a sign I could be recurring. Next, we discussed the results of the genetic testing I had done for one of the Center's clinical trials. The results included recommendations for future treatment if  I should recur. Having a plan for if and when I should recur sure makes me feel good. Then it was exam time.  I won't go into the details here but many of my readers know exactly what that is like. Everything looked good. What a relief!

Next she turned to me and said "When do you want to see me again? Six months?". I said, "Well I'll miss seeing you but sure I can do six months". And six months it is.  Life is good.

Dee
Every Day is a Blessing! Blessed to have such a caring gynecologic oncologist on this journey with me.





Saturday, February 15, 2014

The Love of Grandchildren

My grandchildren live on the west coast so in person visits don't happen very often.  Image how surprised I was when the less than typical Valentine's Day card arrived in the mail. I teared up quickly as I slowly unfolded this life-sized card.




I never thought I would be around to experience the joys of being a grandmother. It sure is a sweet experience.

Peace and Love to all my Teal Sisters.

Dee
Every Day is a Blessing!