Wednesday, May 21, 2014

2014 Annual Retreat on Cancer Research In NJ: Public Forum Personalized Cancer Therapy

For the past few years, I have attended Public Forums that are part of the Annual Retreat on Cancer Research in NJ. Today's forum on Personalized Cancer Therapy held a special interest for me.

I have always wondered how my cancer was different from other women who were diagnosed with Stage 3 serous papillary epithelial ovarian cancer (high grade). Why did my tumors respond so well to chemotherapy treatments? Why was I able to go into remission for a second time for a longer period of time than my first remission?  Well, there are researchers in NJ who are asking the same questions. They are looking beyond the organ and histology but looking at the genetics of tumors. 

You may recall that last year I was asked to participate in a clincial trial in which tumor tissue from my initial diagnosis and my recurrence well as my blood would undergo genetic sequencing.  I learned a bit more about that process today at the public forum. 

Dr. Shrindar Ganesan, Rutgers Cancer Institute of NJ ( RCINJ),  and the lead investigator of the trial I participated, in welcomed everyone to the forum. He explained that genome sequencing is generating a large amount of information and what must now be done is to transfer that into useful knowledge for patients. He also said that each patient has a unique response to treatment be it chemotherapy, immunotherapy or targeted therapy. He then went on to introduce each of the other speakers. 

Dr. Kim Hirshfield ( RCINJ ) began "Next-Generation Sequencing for Every Generation:Everything you Need to Know but Didn't Know to Ask"  by telling us that "one size fits all" in cancer treatment does not work due to differences in individuals and tumors. She went on to explain about chromosomes, genes and how proteins are involved in the growth, proliferation , death and movement of cells. She described oncogenes and tumor suppressor genes and how they can cause cancer. There are also different type of mutations: germline mutations which are mutations you are born with and  somatic mutations those which are acquired later in life. 

Dr Hirshfield then went on to describe the Precision Medicine Initiative in which researchers are trying to understand the biology and mutations of tumor cells in order to offer patients the best treatment. Tumor samples are evaluated for 236 genes. The data from the evaluation is presented to a Molecular Tumor Board which helps determine the treatment. So far 100 patients have taken part in the Initiative. Twenty percent have been prescribed treatment based on their evaluation, another 20 percent have treatment plants but have not yet been prescribed the treatment due to the fact that they are stable or are in remission at this time. For the remainder of the patients some are no longer participating in the study for various reasons and for some there are no current drugs or trial drugs available for their specific mutations. In the 100 patient tumor samples tested there was an average of 3.6 mutations. 

Hetal Vig, a genetic counselor at RCINJ, presented "Capturing the Spectrum of Hereditary Cancers:A Moving Target in the Setting of Targeted Therapy.  She spoke about family pedigrees and germline mutations. Women with BRCA1 mutation have a 60% risk of developing ovarian cancer while those with the BRCA2 mutation have a 25% risk of developing ovarian cancer. She then went on to mention Li-Fraumeni Syndrome ( I had not heard about this syndrome before and will have to look into it further.) This syndrome is linked to the p53 mutation. Hetal also said that all cancers are genetic but not all cancer is hereditary.  

Although the last speaker, Dr Janice Mehnert (RCINJ), spoke mainly about melanoma I found her presentation very exciting because of the progress that has made in less than 10 years in Melanoma treatments. In 2006 there was no good treatment for melanoma. Then they found that they could target the BRAF and MEK genes with some success (Vemurafenib). There has also been success with immunotherapy by targeting the PD1 and PDL1 genes. It may be possible to use targeted therapy and immunotherapy together but clinical trials are needed since more targets may translate into the treatment being more toxic to the patient.  Dr Mehnert then said that "Your tumor is your life" and the focus should be on the understanding each patients tumor. 

During the question and answer period I learned that:
The more suppressed the immune system the more cancer.
When using immunotherapy there may be an increase in tumor size due to inflammation but if the therapy is effective subsequent shrinkage will  occur. 
The researchers agreed that more advocates are needed to raise awareness of the importance of participation in clinical trials.  

I am so pleased to see such important research being done right here in NJ. I also urge my readers to consider participation in a clinical trial. It is through clinical trials that the knowledge we need to better understand how to target our individual cancers can be found. 

Dee
Ever Day is a Blessing!


Wednesday, May 14, 2014

PCORI - A Focus on Patient Centered Research


Recently, I had the privilege of being a patient reviewer for the Patient-Centered Outcomes Research Institute (PCORI). Due to a confidentiality agreement I made when I agreed to be a reviewer, I can’t discuss details of the process. I would though like to share more information about PCORI and make patients aware that researchers are listening when we voice concern over not having enough information to make an good decision.  PCORI insures that there is strong science to support the decisions we have to make.

PCORI was authorized by Congress to provide patients with evidence based research results. PCORI funds what is known as comparative effectiveness research (CER). “Comparative effectiveness research is designed to inform health-care decisions by providing evidence on the effectiveness, benefits, and harms of different treatment options.”(The US Department of Health and Human Services) This information enables patients and their health care providers to understand the science and make the best prevention, treatment and care decisions.

 PCORI’s vision is also focused on the patient.
“Patients and the public have information they can use to make decisions that reflect their desired health outcomes.”

Research that PCORI funds answers these questions:
1. “Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”
2. “What are my options and what are the potential benefits and harms of those options?”
3. “What can I do to improve the outcomes that are most important to me?”
4.  “How can clinicians and the care delivery systems they work in help me make the best decisions about my health and healthcare?”

Answers to these questions are so important. I can tell you that during my treatment for ovarian cancer I wish there was more information to help me make treatment decisions especially when I recurred and there was no “Gold Standard” of care.

PCORI is interested in having patients and stakeholders involved in a variety of ways. Please check out the “Get Involved” page of their website for more information.( http://www.pcori.org/get-involved/landing/). 

Researchers interested in applying for PCORI funding should check their funding opportunities page (http://www.pcori.org/funding-opportunities/funding-center/). 

If you(patients , stakeholders or researchers)  have questions about PCORI  feel free to e-mail them at info@pcori.org .

I came home from the PCORI review happy to see patients working with researchers and stakeholders to make a difference in the lives of others.

Dee
Every Day is a Blessing!

Tuesday, May 6, 2014

Know Your Body, Know Your Risk

Valisia LeKae is a star. She played Diana Ross in the Broadway show Motown: The Musical. That performance earned her Grammy and Tony Award nominations and a Theater World Award.

Valisia LeKae is also an ovarian cancer survivor and advocate who recently completed chemotherapy. When Valisia  first announced that she had been diagnosed I reached out to her on her twitter account. We have tweeted back and forth a number of times and I followed her as she entered treatment. She is an awesome Woman of Teal who has spent many days these past few months raising awareness about ovarian cancer.  Please watch the PSA she recently made for Mount Sinai Hospital. (I am having technical issues embedding the video on this page so I hope you will click on the link below and see Valisia's message.)

https://www.youtube.com/watch?v=Een8_qoaFF8

Thank you Valisia for all you have done and will continue to do to raise awareness of Ovarian Cancer.  I hope to see you performing on Broadway very soon.

Dee
Every Day is a Blessing!




Wednesday, April 23, 2014

Help Support the DOD Ovarian Cancer Research Program

I received an e-mail this morning from OCNA regarding the appropriations for the Department of Defense Ovarian Cancer Research Program  for fiscal year '15 .  I was happy to read that the author of the Senate Letter of Support for the $20M appropriation bill was no other than my NJ Senator , Robert Menendez. He has always been a strong supporter of cancer research.

If you are an ovarian cancer survivor, caregiver of an ovarian cancer survivor or family or friend of a survivor,  please click on this link (http://capwiz.com/ovarian/issues/alert/?alertid=63148556 ) , fill out this form ( a letter is already written for you) and send an e-mail to your Senator. Hurry... the Senator's signatures are required by 5pm on May 1st.

Thank you on behalf of all women diagnosed with ovarian cancer.


Dee
Every Day is a Blessing!

Tuesday, April 22, 2014

Tick Tock - 5 years

In September 2008, I gave a talk about ovarian cancer to the nursing students at Seton Hall University. I had such a nice time sharing my story as a Stage III Ovarian Cancer survivor. I also shared information about the symptoms of ovarian cancer, the risks for the disease and the disease's survival statistics with those future nurses. As I told my story I remember telling the group that the 5 year relative survival rate for ovarian cancer that has spread to distant organs was about 30%. I was at 3 years out from my initial diagnosis so I told the group that I hoped to be in that 30%. At the time I gave the talk, I didn't know that I had recurred and had disease on my liver and spleen. I would learned that a few weeks later after having a CT scan. As many of you know I had surgery in November of 2008 and started chemotherapy in 2009. At the time I wasn't sure that I would make that initial 5 year mark.

On April 22, 2009,  I had my last chemotherapy treatment. I hit 5 years from my initial diagnosis in 2010 but I had recurred. So I restarted that 5 year clock on the day I had my last chemotherapy.

Tick, Tock...2010
Tick, Tock...2011
Tick, Tock... 2012
Tick, Tock... 2013

Tick, tock... April 22, 2014 Five years!!

Feeling extremely blessed today and every day.

Dee

Every Day is a Blessing !

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.