Friday, March 29, 2013

OC Genetics in the News

A few days ago the results of a very large study was published. The study  by the Collaborative Oncological Gene-Environment Study (COGS) involved over 200,000 participants and hundreds of researchers from around the world. Here is a link to the overview article in Nature. It looked at the genetic markers for breast, prostate and ovarian cancer. The study was reported in 13 articles in 5 journals but I concentrated on finding just the ovarian report. 
I searched online and found the article "GWAS meta-analysis and replication identifies three new susceptibility loci for ovarian cancer" in Nature Genetics. I looked through the researcher names and out popped Dr Lorna Rodriguez-Rodriguez. I was thrilled to read that one of my gynecologic oncologists at the Cancer Institute of New Jersey was involved in the research. I allowed my tumor to be studied for the clinical trial I participated in so I wonder if my tumor was part of this large genetic analysis.  I'll have to ask Dr R the next time I see her. 

In a nutshell the Genome Wide Association Study (GWAS) found 4 locations in the DNA that were susceptible for epithelial ovarian cancer. All of the locations were associated with the serous type of epithelial Ovarian Cancer ( EOC) . In the discussion of the results the researchers report: 
"Molecular analyses of genes at these loci ( Location of a gene), combining publicly available data sets and systematic, large-scale experiments, point to a small number of candidate gene targets that may have a role in EOC initiation and development. However, the effects of the new susceptibility loci were modest, and together they explain less than 1% of the excess familial risk of EOC, with about 4% being explained by all known loci with common susceptibility alleles. " (An allele is one of two versions of a  gene.)

"Fewer common susceptibility loci have now been found for EOC than for several other common cancers, including breast, colorectal and prostate cancers28. It seems unlikely that the underlying genetic architecture for EOC susceptibility is substantially different from those of other cancers. This suggests that a key factor limiting our ability to detect susceptibility loci is sample size—the power of this study to detect risk alleles across a range of effect sizes was modest (Supplementary Fig. 12). However, EOC is less common than these other cancers and has a higher mortality rate, and recruiting extremely high numbers of cases will be difficult."

The more tumor samples researchers can examine  the more we can learn about how epithelial ovarian cancer develops. Now is the time for more women with all types of ovarian cancer to allow their tumor cells be used for studies like this one. 

I've given my tumor tissue to research . Will you?

Every Day is a Blessing  

Saturday, March 23, 2013

Lights , Action , Camera - RWJ Commercial

In early February,  I was asked if I would be willing to be in a  TV commercial that highlighted cancer services at Robert Wood Johnson University Hospital (RWJ)  in New Brunswick, NJ. I had both of my surgeries for ovarian cancer at RWJ and  Nick had had his appendix and hernia surgery there. Needless to say I am a fan of the hospital and its' staff. But I was still a bit unsure of whether or not I should participate.  I spoke to Nick, Terry and Matt about the opportunity and since they were ok with it I decided to say yes.

A few weeks ago I was interviewed by Barbara about my experience at RWJ as a cancer patient and given an appointment time.  In follow-up e-mails I was given tips on what to bring( three tops, no solid black or white or tiny patterns)  and do ( style my hair but no makeup) the day of the filming. The day of my appointment was Thursday, March 21st at 11am.

I picked out a teal blouse to wear to the hospital and then a blue blouse, teal and blue patterned blouse and light green boat collar knit top to wear over black slacks for the filming. The teal blouse I wore was one of the first teal pieces of clothing I bought after being diagnosed with ovarian cancer and only wear it for teal events.

I valeted the car at the hospital and was greeted by  Melissa, RWJ's Marketing Manager.  She introduced me to Barbara and Lauri who worked with the production company. I admit I was nervous as they took me in the room they were using to prepare the patients for their time in front of the camera. I had only been on TV once before years ago.  I had a bit of a cold and was not sure how I would look or sound.  After looking at the tops I brought Melissa and Barbara decided that the teal shirt I was wearing was perfect.  Then a young lady (whose name I wish I could remember) started to check my hair and apply makeup. She was very friendly. We chatted about the special effects makeup she has done which I found fascinating.

Then it was time for my part to be filmed. I was lead out into the lobby , mic'ed up and shown a seat in front of the camera. Lights -  Action - Camera. I  started with repeating two lines until I got the right tempo, facial expression and tone.  I slowly become more comfortable with reading the lines in front of the camera. Then the interview part started and Xander, the director, asked me to tell my story. I did fine telling the details of my story. After all I do tell it a lot. But then he asked me how did I find the strength to go through what I did and what motivated me. I told him about the support my family had provided and then I started to tear up and had to stop. I was relating to him how my son was a sophomore in college when I was first diagnosed and how I never thought I would see him graduate college  and here he is today working on his PhD.  Barbara came over with a tissue and patted my eyes.  We didn't want my mascara to run. I took a deep breath and continued. Then I remembered that my daughter had been born at the hospital when it was Middlesex General hospital and I was lucky to be alive for her wedding and the birth of my first grandson. After a few more of those initial lines with some word changes I was done. When I finished I was emotionally drained. Maybe it was because I wasn't just talking about my stage of cancer and type of surgery.  But rather, I was relating how the hospital and my gynecologic oncologists (gyn-onc) helped me live. A recent study reported at the SGO's Annual Meeting reported that many women with ovarian cancer receive inadequate care and do not have surgery done by Gynecologic Oncologists. I am so happy that I was referred to my Gyn-Oncs Dr Rodriguez and Dr Gibbon for surgery at RWJ.

I headed back to the room and the two patients there asked how it went. I told them it was good until I started crying. The woman said she cried too on camera and that made me feel better. She was a cancer patient who had gone through a bone marrow transplant and couldn't say enough good things about her experiences art RWJ. We agreed that it was about time that our local "best" hospital started sharing the good things it does with the public and how people in NJ don't have to travel far to have excellent care.

Now I have to wait to see the finished product but I 'm glad that I could be part of something that will highlight this wonderful hospital.

Every Day is a Blessing!

Monday, March 18, 2013

OC Research News- Delayed Chemo, Albumin,Cognitive Decline, Shift Work

Here are a few more links to interesting stories from the SGO meeting. Thanks to Medpage Today and Cure Magazine for providing these articles.

Delaying Chemo Ups Mortality in Ovarian Cancer
* I started my chemo 14 days after my surgery. It was hard but my docs thought it the best thing for me to do.

Low Albumin Ups Surgical Risk in Gyn Cancers
* I remember getting albumin after my surgeries.

Thirty Percent of Ovarian Cancer Survivors May Suffer Cognitive Decline After Treatment
* I have written about "chemo brain" in the past and continue to experience it.

Occupational and Environmental Medicine Journal article:
Evidence Indicates Link for Shift Work , Ovarian Cancer


Thursday, March 14, 2013

SGO Annual Meeting on Womens' Cancer

This past weekend I followed the Society of Gynecologic Oncologists Annual Meeting online, on twitter by  following #SGO2013 , on Facebook and through the news outlets. 

Here are the articles and videos I found most interesting. 

  • Here is a link to a video summary by Drs Sood and Huh of important research presented at the meeting..
  • If you are like me and want to read the abstracts of the research and posters here is a link to the meeting website. Simply scroll down and you can download the abstracts and posters. 

My hope is that next year I will be able to attend next year's meeting in Tampa so that I can hear the research reports first hand and offer the patient's perspective.

Every Day is a Blessing!

Tuesday, March 12, 2013

Interview with Dr Goli Samimi ~ Ovarian Cancer Researcher

About two weeks ago I read an article on the site entitled "Ovarian Test is Close:Researchers". The research of Dr Goli Samimi a researcher in Australia was mentioned in the article and I was interested in learning more about the DNA blood test she was developing. I searched online and found her page on the Garvan Institute of Medical Research site which is located in Australia. So after a bit of thought and a nudge by a friend I decided to e-mail Dr. Samimi and ask her if she would answer a few questions about her research for this blog. She responded to me and said she would be happy to discuss her line of research. 

I am happy to share with you Dr Samimi's responses to my interview questions. 

1.  You are currently associated with the Garvan Institute of Medical Research in Australia. What is your medical background and how did your interest in ovarian cancer research begin?
I’m not a medical doctor—I received my PhD from the University of California, San Diego in 2004. My thesis involved studying why ovarian cancer cells become resistant to chemotherapy. I then did my post-doctoral fellowship at the National Cancer Institute, NIH in Bethesda, MD. My post-doc research involved studying ovarian tumors to find new therapeutic targets.

2.  In the recent online article “Ovarian Cancer Test is Closer: Researchers” it mentioned identifying specific biological changes in DNA of women with ovarian cancer. Does your research use blood samples, tumor samples or cell lines?
Our research uses blood samples to identify DNA changes, because the hope is to develop a non-invasive test (such as a blood test) that can be used to determine which women may have early stage cancer. Once we have identified some of these changes, we will check to see if they are also present in the corresponding tumor.

3.  Please describe in layman’s terms the methods you are using to conduct your research.
We collect blood from patients or healthy volunteers. We then separate the plasma and use a commercial kit to isolate the DNA that is present in the blood. We then use another commercial kit to enrich the DNA for regions that are methylated—this is a biochemical alteration in the DNA that happens during the development of cancer. We then subject the DNA to sequencing to compare which regions are methylated in cancer versus healthy subjects. Once we get a list, we need to confirm these regions in a larger sample before it could be applied to the public. We are looking at 5-10 years down the line.

4.  What DNA changes are you looking for? Insertions, deletions, mutations?
DNA methylation is considered an epigenetic alteration, which means a change in the structure of DNA, rather than the actual sequence.

5.  How does your line of research differ from others developing early detection tests?
We are the first who are applying whole-genome sequencing to methylated DNA from blood. Most are focusing on proteins (like CA-125) or specific DNA sequences.

6.  Do you see this test being used in the general population, with women at risk for ovarian cancer or those exhibiting symptoms of the disease?
Because of the relative rarity of ovarian cancer, it’s difficult to apply these kinds of tests to the general population as you would need essentially 100% accuracy for it to be helpful. So we intend to apply this test to women at risk, so women with a family history of breast or ovarian cancer.

7.  When will your test be ready for clinical trial? What issues do you see in developing this method for widespread use?
Because the analysis of whole genomes takes some time, and the results have to be validated in larger samples before being applied in a trial, we are aiming for 5-10 years down the road.

8.  Will the cost of this test be in line with other detection tests, such as the CA-125?
Good question, I actually don’t know the answer to this. I guess it would depend on who markets it and how many women it can be applied to.

9.  What do you see in the future for women diagnosed with ovarian cancer?
We know that women who are diagnosed early have a very high survival rate (80% 5-year survival). They usually undergo surgery and may not even need chemotherapy treatment. So if we can improve early detection, we can improve the survival rate and quality of life of women diagnosed with ovarian cancer.

10. Is there anything else you would want women to know about your test for ovarian cancer?  
We still have some time before our test or others will be developed or applied, so in the meantime listen to your body and make sure to have regular check-ups.

Thank you Dr Samimi for taking time to answer these questions and all your efforts to find a early detection test for ovarian cancer. 

Every Day is a Blessing!  

Thursday, March 7, 2013

A Different Type of Conference

Yesterday I took part in a panel at the ePharma Summit Marketing in a Digital World conference in NYC. The panel organized and led by WEGO Health’s Bob Brooks was titled Social Media for Pharma: A Match made in Heaven or Hell. 

I have attended ASCO annual meetings which were geared toward cancer research results and two Ovarian Cancer Survivors Courses by the Foundation for Women’s Cancer but this was the first time I attended or took part in a conference not geared completely toward ovarian cancer or cancer research but geared toward digital pharmaceutical marketing. My audience  and a majority of the other attendees were not other survivors or researchers but marketing directors, communication executives and marketing and healthcare technology professionals.  

I arrived early to be able to listen to a few of the other speakers. There were talks on how to use real-time data, how to use Big Data ( lots and lots of data) effectively, how to engage patients and how to build a relationship with patients to improve patient compliance in taking their prescription medication. 

Notable lines:
Data beats opinion. 
How have I satisfied my customer?
Engage your customer.
Get more personal.  

I was happy to see that the theme was how companies need to listen to their consumers/patients. 

Then the afternoon rolled around and it was time to walk up on the stage with the other panelists, Michael Weiss, a Crohn’s disease activist(, Tiffany Peterson, a Lupus activist ( and Casey Quinlan, an author and breast cancer activists( They are amazing activitists going above and beyond to raise awareness of their diseases and speaking for other patients. 

My part of the panel focused on how Pharma could use social media and the internet to reach out to patients during drug shortages. Not just health care providers but patients who are on IV chemotherapy need shortage information too in order to plan their treatment going forward. I suggested that in addition to letters to physicians that pharma reach out to patients through a patient press release and infographics to explain processing steps, etc. I also highlighted the Doxil Supply page and twitter account @supplyupdate as examples of a good way to reach patients and how I wish it had been available more quickly. After the pane,l I was thrilled to have a chance to speak to Lisa, a digital marketing director from Janssen about the Doxil page.  

So yesterday I got a chance to share my feelings as a survivor and customer but I also learned. I learned that the FDA is responsible for notifying the public and patients regarding drug shortages. There are no FDA  rules for internet/ social media use by the pharmaceutical companies.  I think a new goal of mine should be how to get the FDA to better communicate information about IV shortages with us. Anyone know who I can write to at the FDA to get the ball rolling? 

Every Day is a Blessing!

Monday, March 4, 2013

IVF and Ovarian Cancer

The question of whether invitro fertilization (IVF) increases risk for ovarian , endometrial and cervical cancers has been debated for a time. It is thought that increasing the release of eggs from the ovary by IVF and the subsequent inflammation may lead to an increase risk for ovarian cancer.

An article in the March -April 2013 issue of the Human Reproduction Update journal titled

Controlled ovarian hyperstimulation for IVF: impact on ovarian, endometrial and cervical cancer—a systematic review and meta-analysis

is a study by researchers from Greece, the United Kingdom and Sweden. They examined 9 studies which included over 100,000 women. Comparing the women who underwent IVF to the population of infertile women there were no significant associations with ovarian, endometrial or cervical cancer. When they compared the general population of women with women who underwent IVF they found significantly positive association with ovarian cancer and endometrial cancers but not cervical.

I am hoping that future research will include long term follow-up ( only one study was for 10 years after).

Source: Article abstract

Every Day is a Blessing!