Thanks a Million!

(press release from Cycle for Survival)

Memorial Sloan-Kettering’s Cycle for Survival Raises More Than $1 Million to Support Research on Rare Cancers

NEW YORK -- January 29, 2009 -- More than 1,500 indoor cyclists and supporters joined together at Cycle for Survival on January 25 to raise more than $1 million in support of research on rare cancers at Memorial Sloan-Kettering.

The event took place at Equinox fitness club in Midtown and at satellite locations worldwide.

Fundraising surged dramatically just before the event, with participants and donors rallying to raise over $400,000 in the final week. “In the final push, people really came through,” said Jennifer Goodman Linn, event founder and participant. “Cycle for Survival was an inspiring success and an exciting experience -- a day that brought so many people together to support the cause and share their hope for the future. It was truly overwhelming.”

Proceeds from the first two Cycle for Survival events helped underwrite a clinical trial that has led to a new chemotherapy regimen more effective at shrinking tumors in patients with some forms of rare cancer.

Dr. Robert Maki, associate attending physician and co-director of the Adult Sarcoma Program in Memorial Sloan-Kettering's Department of Medicine, acknowledged the need for continued research. “The standard drugs we have used for the first fifty years of the history of medical oncology are toxic and not always particularly effective,” said Maki. “By gaining a better understanding of the basic biology of these types of cancers, we hope to develop more precise treatments that focus on specific targets in the cancer cell...”

more here

more STABLE news

Dear FDA:

We (sarcoma patients) want you to know that in our world STABLE means GREAT NEWS... (open letter to be continued)

Michelle has results from her exams :-)

"Today was my 12th week on the clinical trial for Brivanib. I met with Dr. Maki & he gave me good news that my tumors are stable, there is no change from my last MRI... "
continue here

bake sales help

interview with Dr. Demetri (Dana-Farber) extracted from article in curetoday.com Winter 2008
.... Another clinical trial hurdle comes in the form of funding. Because of its relatively simple genetics, sarcoma is a good model for studying other cancers, and in the past it was studied at a rate larger than the proportion of cancer patients who have sarcoma. Recently, however, the reverse has been true.

“Just when the country stands most poised to take advantage of 50 years of biomedical research, the funding for cancer research generally is decreasing in real terms, and the funding for sarcoma has been disproportionately hit,” Dr. Demetri says. Although the funding cuts are dispiriting, Dr. Demetri is encouraged by the fundraising efforts of the sarcoma community. “We are blessed with patients and caregivers who recognize that there is a lack at the federal level and are stimulating philanthropy to try to fund our field. Bake sales help,” he says. more here

Fernanda passed away yesterday. I have been trying to write but I am still too sad and too upset... and I have no right words.

This photo makes me smile. I was at Memorial Sloan-Kettering recovering from surgery # two. My cousin Fernanda knew better than anyone how I was feeling. Besides being a nurse she had been diagnosed (with breast cancer) in the same year as I was. She was also a mother.

This photo was taken in a cold January day in 2002, just like today, but we were younger and still at the door step of this cancer world.

If you look closely you will see what she was doing. Only Fernanda would think of transforming a hospital room into a spa. We laughed when we heard the lady in the next bed asking: what is this smell? There was a heavy nail polisher scent in the room. Ah don't make fun of my hairdo. Fernanda had just helped me wash it.

My cousin was a lot braver than I will ever be. The only comfort I have is knowing that I have her example to follow.

I give you this one thought to keep -
I am with you still - I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sunlight on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush,
I am the sweet uplifting rush,
of quiet birds in circled flight.
I am the soft starts that shine at night.
Do not think of me as gone -
I am with you still in each new dawn.

Native American Prayer

Kung Hei Fat Choi

Bom Ano do Búfalo
Happy Year of the Ox

Chinese New Year predictions here

Brivanib or Placebo 800mg

I just took the pills. I took them the same way I do every night, with food and a little after 10pm. Anderson Cooper 360º is on and I am already in bed. My laptop on top of my belly. If this is the study drug I will fall asleep in 10 minutes. If it is a placebo I will write another post tonight ;)

Inconclusive News

Elsa just saw the doctor. She is going on, but since there was some growth and not reduction, she is being randomized. She may be getting the placebo or the drug for the next few weeks.

Still, it's better than getting kicked off. The rate of growth is much less than usual. Usually it is obvious that the drug does not work. In this case, because of the amorphous nature of the tumors and the fact that she cannot take IV contrast, the measurements are hard to take, so that small differences are not immediately obvious. The key is the amount of growth is NOT OBVIOUS.

So we take it the way it must be taken- positively.