Thursday, May 29, 2014

It Was Only A...

Stomach bug.
I know that now but I still went through a few days of worry.

Last Friday I woke up tired. And I can't say that I had a sleepless night. Rather I felt rested but after a mid-day lunch with ladies from my community I came home and took a nap. Maybe I should say I went back to sleep for almost 2 hours. And I thought - gee I felt really tired right before I was diagnosed the first time. Did I think I had cancer then? No. But here I was tired and the first thing that came to mind was cancer. The second thing I thought of was the high pollen counts and how maybe I was tired due to allergies.

The next morning my stomach was upset and I  didn't feel like eating but I told myself "get up and out and you might feel better". And that is what I did even though I didn't feel energetic at all. We went to evening Mass and I ate breakfast food ( scrambles eggs / french toast) for dinner just because I didn't want to eat anything to heavy. But within an hour  I got what I call, "grumbly in my tummy",  and had some abdominal pain and cramping and felt even more sick to my stomach and ,well,  let's just say I visited the bathroom more times than usual.

Of course when I woke up on Sunday feeling full and not wanting to eat because I was nauseous my thoughts once again went straight to - bloating , feeling full quickly, upset stomach- the symptoms of ovarian cancer. Oh cr*p, I thought. Just when I thought I was out of the woods. Then of course I started calculating if it was a recurrence would I be done with treatment before my son gets married next year. And I started thinking about how I might have to cancel my attendance at MedX in September. See how my mind works and worries. I spent the day reading and my diet was tea and toast and a little plain pasta for dinner.

Monday I woke up feeling pretty darn good. And now, well,  I feel back to normal.

In a few online groups that I participate in the topic of worrying about a recurrence at the least bit of abdominal discomfort comes up quite frequently. So I know that other women go through the same anxious periods. So even five years out from finishing chemo for my recurrence my thoughts still go directly to another recurrence any time my stomach is upset. Not sure if and when these thoughts might go away forever but I am glad to put this incidence behind me. I just keep having to tell myself - give the symptoms time ( at least 2 weeks ) before I get too nutty.

Every Day is a Blessing! Blessed by a husband who deals with my recurrence fears with a smile.

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. 

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.( 

Researchers interested in applying for PCORI funding should check their funding opportunities page ( 

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

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.

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.)

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.

Every Day is a Blessing!