OCNA Conference and Ovarian Cancer Capitol Hill Day

The Ovarian Cancer National Alliance is holding its 11th Annual conference in Washington DC on July 8-10, 2008 at the Omni Shoreham Hotel . It should be a very interesting time to meet other survivors , listen to reports on the latest research and celebrate those who have made a difference in the lives of other.


July 10th is Ovarian Cancer Capital Hill Day. Training takes place the night before. Capital Hill visits are scheduled from 9 -3 that day. It is so important that Senators and Congressmen are given the opportunity to put a face - our face - on this disease.

LiveStrong
Dee

Two Thoughts

The past week I picked up a fortune cookie and a mint from Chick-fil-A. Here are the words of wisdom they contained.

Fortune cookie
It is up to you to create your own adventures today!

Sometimes on this cancer journey we need to remind ourselves that it is ok to have a little adventure. For me, during treatment a walk in Donaldson Park sometimes gave me the opportunity to watch the Rutger's crew teams row. That unexpected treat was an adventure.


Chick-fil-A
"We never realize our greatest potential until we perform our very best"

LiveStrong
Dee

Senate Passed GINA on April 24th

The US Senate passed the Genetic Information Nondiscrimination Act (GINA) on April 24th. GINA prohibits discrimination on the basis of genetic information with respect to health insurance and employment. The bill is being sent to the House for a vote. President Bush has already said he will sign the bill into law.
This will help high risk women feel more comfortable about getting tested for BRCA1 and BRCA2 mutations.

A Great Doctor Visit

Today was my 3 month visit at CINJ with my gynecological oncologist, Dr Darlene Gibbon. She once again went over my CT results. ( There were no changes since the December scan.) . We talked about the results of the clinical trial I was in that Dr Rodriguez reported on in San Diego earlier this month. We also talked about the new Yale marker test and I asked about Dr Wicha and his cancer stem cell research. Then it was exam time. Everything looks good! Hurrah! So I asked Dr Gibbon if I could make my next appointment in 6 months. Now I really enjoy speaking with Dr Gibbon about various topics-not always cancer related. But her answer was no - once I am 3 years out of treatment( that will be March 2009) then I can go to every 6 months. So I will get a chance to see her and her staff in July.

Continuing to LiveStrong
Dee

Help with a LiveStrong Day Project

A fellow LAF volunteer is doing a special project for LiveStrong Day -May 13, 2008.In her e-mail she says:
"I have committed to the Lance Armstrong Foundation that I will obtain 10,000 signatures supporting the requirement that cancer should be a national priority. My goal is to submit these signatures to state and federal legislatures on May 13 -- Livestrong Day."
So please visit her website and sign the petition- I did!


LiveStrong
Dee

Ovarian Stem Cells

I received a calendar of events from SHARE . They are having a a speaker Dr. Max Wicha speak on May 2. His topics is The role of stem cells in the cause and treatment of cancer. So I went on-line and found a NY Times article written this past December on his research. His research looks at cancer stem cells- those cells that make tumors.

"Although many scientists have assumed that cancer cells are immortal — that they divide and grow indefinitely — most can only divide a certain number of times before dying. The stem-cell hypothesis says that cancers themselves may not die because they are fed by cancerous stem cells, a small and particularly dangerous kind of cell that can renew by dividing even as it spews out more cells that form the bulk of a tumor. Worse, stem cells may be impervious to most standard cancer therapies."

Today I looked at my own blog page's News section and I found an article article "Ovarian Cancer Stem Cells Identified, Characterized" based on research done at Yale. At the AACR conference, Dr. Mor presented his research that "identified, characterized and cloned ovarian cancer stem cells"and showed that these stem cells may be the source of ovarian cancer's recurrence and its resistance to chemotherapy."

University of Michigan researchers also presented info as reported in this article; "Secrets of Cellular Signaling ..." . Their research looks at how these stem cells communicate via the Notch pathway and that a drug developed for Alzheimers patients by Merck is being tested on breast cancer patients in a trial.

Maybe these stem cells really do hold the answer to the question of why some women become resistant and recur so quickly and some after a long time and some not at all. Interesting research!

LiveStrong
Dee

It's Good!

Right after dinner Deanna, my oncology nurse from CINJ, called to give me my CT scan report. My chest and pelvic scans were clear and the spots on my liver are unchanged. Now that is GOOD NEWS! She made my day.

Continuing to LiveStrong!
Dee

A Loss for Northern NJ NOCC

Today I learned that a fellow Northern NJ NOCC member, Ann Hall , passed away yesterday. Ann was a wife, mother and restaurateur. She and her husband owned the Ship Inn and Brewery in Milford, NJ. She would come to our NOCC meetings ready to make a difference in the lives of others. While she felt well she kept the chapter's web page up to date. She was such a dynamic and beautiful woman and she will be missed by many.

Services will be held at the Countryside Funeral Home in Three Bridges, NJ (RT 202) . Tentative date April 25th.

LiveStrong
Dee

Remembering Last Year - a Parent's Thoughts

I remember getting a call on my cell from my daughter( in South Carolina) -"Mom, turn on the TV there has been a shooting at Tech". Due to a severe rain storm our house telephone line was out of service, school was canceled and I was home.

We had just returned from visiting my son in Switzerland. He was in Riva San Vitale participating in the Virginia Tech study abroad program. We listened to the town's Holy Saturday Concert , attended Easter Mass in this small town of 2000 residents, and had Easter dinner in the Villa Maderni with all the students and Elizabeth and Annette.

I turned on CNN.Then the call came from Matt.He asked "What do you know , what is going on?" They had no TV in the Villa so the only contact they had was the internet, two office phones that could call the US and the few cell phones- like Matt's -that could phone home. We relayed what we knew at the time. Two student's were shot in West Ambler Johnson and there was a gunman on campus. Matt lived on the 7th floor of WAJ the previous semester. When word came that Ryan Clark, band member and as Matt described him "Mr. Tech" was killed my heart ached. But what about Norris Hall and the gunman?

I was ready to get in the car and drive the 8 hours to Blacksburg to help. If Matt had been on campus that is exactly what I would have done. But we just kept watch at home, prayed for the students, their parents and the university administration and relayed info to Matt. I e-mailed a few of his friends and checked the away messages of others. I thanked God that they were all ok. Matt called to tell us, that a fellow crew member had been shot but was out of surgery- and we choked up again.

I could not find any words to comfort my son. I was in dire need of being able to give him a big hug but that was impossible he was too far away. I could not wait for him to come home. I remember the call "Mom they found us here in Riva. The CNN truck is parked across the street. They want to know how we feel." A parent never wants a child to have to experience this loss, this type of pain. We received an e-mail from the Riva program letting parents know how they were dealing with the situation. I was comforted. A few days later Matt posted his photo of the memorial the students in Riva created to honor their friends in Blacksburg. ( The photo above is the memorial in Riva taken by Matt.)

The more we learned about the situation the sadder I became. I could not imagine how the parents felt. Yet I was also proud - proud of the Hokie students and the Hokie nation , proud of communities around the nation who showed support. I was happy that Matt was a Hokie.

Now it is a year later. This morning at St Paul the Apostle Church( Highland Park , NJ) we said as special prayer for the VT students. I write this as I listen to the webcast of the University Commemoration. Stopping to listen to the comments about the 32. They were incredible individuals.

Nikki Giovanni said:
We will continue to invent the future
Through all our blood and tears
Through all this sadness
We are the HOKIES
We will prevail!
We will prevail!
We will prevail!
WE ARE VIRGINIA TECH!

LiveStrong!
Dee

A Women's Health Care Summit on Ovarian Cancer

This morning I attended the Women's Health Care Summit on Ovarian Cancer at the Morris Museum in Morristown. Congressman Rodney Frelinghuysen(Morris County) , a co-sponsor of Johanna's Law, worked with the HeathCare Institute of NJ to make this program happen. It was a very informative morning. Somerset Medical Center, St Barnabas Health System, Atlantic Health Care and St Clare's offered free health screenings. While Bristol Myers,Novartis, sanofi-aventis,Pfizer, J&J and BD provided cancer and drug information and gifts for attendees.

The best part was the Speakers program. After a welcome by Congressman Frelinghuysen and Honorable Bob Franks, president of the HeathCare Institute of NJ, we listened to the Survivor's Stories of Lois Myers and Gail MacNeil. They spoke of their work with Kaleidoscope of Hope Foundation to raise funds for ovarian Cancer research. ( I am a board member of KOH).

The Keynote speaker was Dr Elise Kohn from the National Cancer Institute. She discussed the properties of a good OC screening test. She said the test must be easy to do, specific for OC , sensitive to OC and get effective intervention. She presented information on the latest clinical trials at NCI and NIH for Ovarian Cancer which include studies with Avastin, Nexavar and dasatinib. She spoke to us in terms the mostly lay audience could understand. I got the chance to chat with Dr Kohn after the Summit was over and I found her to be a very thoughtful and dedicated researcher.

After a short break there was a panel discussion led by Dr Darlene Gibbon from CINJ. The doctors on the panel , Dr.Tobias, Dr. George, and Dr. Nehra presented information about ovarian cancer symptoms and treatment. Janice Berliner, a genetic counselor, presented information on when genetic testing would be recommended and steps to be tested. There were so many questions for these experts that we went 15 minutes over the scheduled time . Personally, I would have like the session to continue for another half - hour.

Now if only we could have one of these Summits in central NJ. Maybe that will be on my next LAF action plan.

LiveStrong
Dee

Thanks Professor Randy Pausch

I got home in time last night from my KOH meeting to watch the Last Lecture a Love Story for your Life.

I had watched the lecture on You-Tube and I wanted to see more. I knew Randy worked at Carnegie Mellon in computer science but did not realize until the show that he developed the Alice Language. I taught AP Computer Science so I was familiar with the language and the impact the language made on computer science education. He was an expert in his field!

I found the show fascinating. As I watched I kept thinking how great is it that this man is talking about cancer and survivorship and death on national TV . I watched and thought- Yup I feel that way - or -He knows about that "tingly" feeling from neuropathy- just like me. He showed his CT scans and I thought - Gee I had one of those today. He worries about his children, just like I do. And he loves Tigger. I am a Pooh person myself but I would often remark that I felt like Eeyore when my treatments would be postponed.

His wife Jai was wonderful too. She offered the caregivers perspective and I looked over at Nick who was shaking his head in agreement as she spoke.

Thanks for sharing your love story and life with the world, Professor and may your always LiveStrong!

Dee

A CT Scan in Record Time & the Last Lecture

This morning I was scheduled for my 6 month CT scan. Following the usual routine, I arrived at CINJ at 8:30am for my 8:45am port access. Fanina accessed it quickly , printed out my blood results and then I drank another one of those super delicious ;) EZ- Cat drinks.

I strolled across the street to RWJUH around 9:10. I went into admitting which printed out my bracelet and thenI went to the ground floor Radiology department. Once there I filled out the requisite CT history- mine is quite long - this was my 8th chest/ab/pelvic scan. When I got back from my visit to the rest room( all of you who have had a CT with contrast knows the thrills involved in preping for it) the technician was there to bring me down the hall for the test. I had the scans done on a 128 slice Siemans machine. It gives instructions with a British accent which I still find funny. The instructions are to "Take a deep breath and hold " the machine does the scan and then it tells you to " Carry on Breathing" . Yup "Carry on " is exactly what I will do. Anyway I was finished with the scans in about 10 minutes. They called a nurse in to flush and remove my port access and off I went. I was all finished before my 9:45am scheduled appointment time. Wow! Usually I wait a good 45 minutes to and hour and a few times almost 3 hours to get the scan done. I guess today was a slow day in the emergency room and on the hospital floors. Good for me.

Tonight I plan on watching the Last Lecture : A Love Story for your Life . ( ABC news 10 pm)It is about the last lecture of Professor Randy Pausch at Carnegie Mellon. Randy is a pancreatic cancer patient.

LiveStrong
Dee

Gyn-Onc Is Reporting on my Clinical Trial at AACR meeting

Dr. Lorna Rodgriguez, my gynecological oncologist at the Cancer Institute of NJ will be making a presentation at the American Association of Cancer Research Annual Meeting in San Diego on April 16th. She will be reporting on the clinical trial I took part in during my treatment in 2005 and 2006.
Her presentation
" Prevention of carboplatin resistance by selenium a phase I trial in women with gynecological malignancies"
is part of the Individualized Cancer Therapy Session. There were early studies done, at Rutgers my alma mater, on mice that showed that Selenium inhibited carboplatin drug resistance. So the doctors at CINJ developed this phase I trial to study the effects of selenium on carboplatin pharmacokinetics ( the process where a drug is absorbed, used,metabolized and gotten rid of ) in women with ovarian cancer. Another part of the study was to find a surrogate marker of the selenium effect. Well it turns out that selenium at the levels tested were well tolerated and did not effect the carboplatin pharmacokinetics. The study also found a possible marker of Se activity in the prevention of carboplatin resistance. Congratulations to my team of doctors- Dr Rodriguez , Dr. Gibbon, Dr. Nieves and Dr. Vaidya on such great work. They truly help me LiveStrong!

Dee

A Successful KOH Gala

Last night the Kaleidoscope of Hope Foundation held its annual Gala and Silent Auction. The event was held at the Westin Governor Morris Inn in Morristown, NJ. Over 200 people attended the gala and there were over 40 silent auction items. Bids for the personal tour of the White House , the Mac laptop and tickets to the Colbert Report and the Daily Show were especially popular. Although I did not win any of the auctions I did purchase a beautiful silver KOH bracelet.

Novartis - this year's Founders' Award winner was presented with a teal kaleidoscope.
Research Awards were presented to Dr. Karuppaiyah, Ohio State; Dr. Cairns, Fox Chase Cancer Center,and Mr Rosati, Ovarian Cancer Research Fund. The final award went to the Cancer Institute of NJ and Dr Vaidya to support her fellowship in gynecological-oncology.

To date KOH has awarded over $1 million in grants for ovarian cancer research and awareness . It makes me very proud to be a part of this wonderful organization. I am confident that we will find a screening test and cure for this disease!

LiveStrong
Dee

Disney Trip

Spent the past few days in Florida where the weather was wonderful and warm. Hence the lack of blog entries.
We stayed at the Saratoga Springs Resort by Downtown Disney. Most of the time we spent at the annual Flower show at Epcot. There were beautiful flowers, topiaries, butterflies and garden displays. We did visit Animal Kingdom to ride the safari ride and the Magic Kingdom to ride Buzz Lightyear, Space Mountain and Small World.

After my diagnosis and surgery I wasn't sure how many other trips I would be able to make, so every trip is a real treat!

LiveStrong
Dee