Tuesday, August 12, 2014

Act 3, Scene 1

(Disclaimer. This blog and the NSBCF is dedicated to fighting for our lives. We have an illness: cancer. This post is about another illness, an illness as real as cancer: depression. If you or someone you love is battling this disease, please reach out to someone or contact the suicide prevention hotline at: 1(800) 273-8255)


To be, or not to be--that is the question:
Whether 'tis nobler in the mind to suffer
The slings and arrows of outrageous fortune
Or to take arms against a sea of troubles
And by opposing end them. To die, to sleep--
No more--and by a sleep to say we end
The heartache, and the thousand natural shocks
That flesh is heir to. 'Tis a consummation
Devoutly to be wished. To die, to sleep--
To sleep--perchance to dream: ay, there's the rub,
For in that sleep of death what dreams may come
When we have shuffled off this mortal coil,
Must give us pause. There's the respect
That makes calamity of so long life.
For who would bear the whips and scorns of time,
Th' oppressor's wrong, the proud man's contumely
The pangs of despised love, the law's delay,
The insolence of office, and the spurns
That patient merit of th' unworthy takes,
When he himself might his quietus make
With a bare bodkin? Who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after death,
The undiscovered country, from whose bourn
No traveller returns, puzzles the will,
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all,
And thus the native hue of resolution
Is sicklied o'er with the pale cast of thought,
And enterprise of great pitch and moment
With this regard their currents turn awry
And lose the name of action.

Please take a moment and read Hamlet’s words as he contemplates ending his life. Shakespeare captured the tortuous moments a deeply depressed person goes through when there seems to be no end in sight.

Depression is a disease. It has some shame to it because it is “mental” and people in deep depression are often confronted with criticisms such as, “Why doesn’t he/she snap out of it?” or “He/she has everything! What do they have to be depressed about?”  Depression strikes no matter what you have going on in your life.  Over 600,000 people attempt suicide every year in the United States.

Brilliant, creative, imaginative people seem to be the most vulnerable to depression. There is something about the creative, sensitive psyche that makes you feel things more exquisitely. The same ability to have your heart race when you see an osprey overhead carrying a fish back to the nest, or to see a sunset that can move you to tears, makes you feel other things as well. Sadness. Loneliness. Despair.  You can have all the friends in the world and you can have a loving, wonderful family, but they cannot heal your spirit. Only you can do that. And it takes a lot of work.

Before you can heal, you must travel to a very, very dark place. It was perfectly described in “Ordinary People,” written by Judith Guest, and acted, with perfection, by Timothy Hutton. When young Conrad was asked what his depression was like that led to his suicide attempt, he opened up for the first time:

Conrad: “I don't know. It was like... falling into a hole. It keeps getting bigger and bigger and you can't escape. All of a sudden, it's inside... and you're the hole. You're trapped. And it's all over. Something like that. It's not really scary... except when you think back on it. 'Cause you know what you were feeling.”

His wise psychiatrist tells him later, “ Let me tell you something about feelings, Kiddo. They don’t always tickle.”

And so this leads me to Robin Williams. I keep hearing people saying, “He was so funny! How could this happen?” The person who opens their heart and makes everyone else feel good, doesn’t necessarily make himself feel better. In fact, it is a temporary tonic for them for the moment. And then they return to their lives and they are not laughing. Real life is not a stage. Real life does not include adoring fans. Real life for someone in a deep depression, who is trying to stay sober, who is facing money troubles, who has to maintain a happy face to the public, can be overwhelming. Sometimes it is just too much to be the strong, happy, brilliant, funny guy. And perhaps that is how Mr. Williams felt.

He did the only thing he felt he could do to stop the pain. It is tragic and sad. I personally loved Robin Williams. He was a genius in my mind. And geniuses fight the hardest battles.

When Christopher Reeve had his riding accident and had to get intensive therapy, Robin Williams, his roommate at Julliard, paid the expenses. He was a generous soul. He gave and gave of himself until there was nothing left to give in his mind.

In the spirit of his generous heart, if you know someone who may be suffering, reach out. It can be something as simple as, “If you ever want to have a cup of coffee or maybe just watch tv together, I would love to hang out with you.” And then, when you are together, just let them be. Don’t ask more of them than they can be. Don’t make them entertain you. Just be their friend. If you see warning signs: Lack of sleep, loss of appetite, overuse of alcohol or drugs, sleeping too much, or not caring about their appearance, seek help for them.

Suicide has been happening long before Shakespeare wrote about it so eloquently. Depression is now recognized as a legitimate disease. And people can recover from it. It takes work. And sometimes you have to feel worse before you feel better. But you can get better. So with that knowledge, if you need to hear it for yourself, believe it. Or if you need to know for a friend or someone else you love, let them know and help them find help.

Thursday, August 7, 2014

New Gene Mutation Possible Link to Triple Negative Breast Cancer and Young Women

The No Surrender Breast Cancer Foundation's Before Forty Initiative strongly advocates the importance of early screening for breast cancer in women before the age of forty and not waiting until after forty for baseline screenings. This is particularly true for women of African-American, Hispanic and Ashkenazi heritage, because when breast cancer develops in these populations, it is most often the aggressive triple negative breast cancer.

Women who have the BRCA 1 and BRCA 2 gene mutation can be tested before their cancer is found, and can take protective measures such as a prophylactic mastectomies, to reduce their risk of developing the disease.

A new gene mutation has been discovered that is most closely related to younger women and triple negative breast cancer. It is called the PALB2. The following is a report from the New York Times, detailing the findings.

Study Shows Third Gene as Indicator for Breast Cancer


Mutations in a gene called PALB2 raise the risk of breast cancer in women by almost as much as mutations in BRCA1 and BRCA2, the infamous genes implicated in most inherited cases of the disease, a team of researchers reported Wednesday.

Previous data had indicated that mutations in PALB2 were linked to breast cancer, and many genetic tests already screen for them. But it had not been clear to what extent these mutations raised a carrier’s odds of developing the disease.

Dr. Marc Tischkowitz, an associate professor of medical genetics at the University of Cambridge, and his colleagues studied 362 members of 154 families with PALB2 mutations. None had BRCA1 or BRCA2 mutations, but all had at least one family member with breast cancer and a mutation in PALB2. There were 311 women with PALB2 mutations, of whom 229 had breast cancer, and 51 men with the mutation, of whom seven had the disease. The results were published in The New England Journal of Medicine.

Over all, the researchers found, a PALB2 mutation carrier had a 35 percent chance of developing cancer by age 70. By comparison, women with BRCA1 mutations have a 50 percent to 70 percent chance of developing breast cancer by that age, and those with BRCA2 have a 40 percent to 60 percent chance. The lifetime risk for breast cancer in the general population is about 12 percent.

The breast cancer risk for women younger than 40 with PALB2 mutation was eight to nine times as high as that of the general population. 

The risk was six to eight times as high among women 40 to 60 with these mutations, and five times as high among women older than 60.

The scientists were not able to explain why younger women with the mutations were at higher risk. And there were too few men, Dr. Tischkowitz said, to make a judgment about their risk.

The data also indicated that women with the PALB2 mutations were slightly more likely to have “triple negative” breast cancer — a form resistant to hormone treatment, more aggressive, and more likely to recur than other subtypes.

Dr. Anees B. Chagpar, the director of the breast center at Yale-New Haven Hospital, who was not involved in the work, said she was impressed with the study but cautioned that other factors must be considered in evaluating a woman’s risk.

“This has to be tailored to the patients, who may have other mutations and varying family risk,” she said. “With no family history, the increase they found is 35 percent. If you have two or more family members with cancer, they found a risk of 58 percent.”

The study used data from 14 sites in eight countries but found no significant geographic variations in its prevalence. The researchers write that larger studies are needed to detect such differences, as well as to assess the role of lifestyle and hormone use on breast cancer risk in PALB2 mutation carriers. Breast cancer risk depends not just on genes, but how they interact with the environment.

Official guidelines do not recommend screening for breast cancer genes in most women, only for those with a family history of the disease. Dr. Tischkowitz said that such women should consider testing for PALB2 mutations if they are negative for BRCA1 and BRCA2 mutations.

Dr. Chagpar said: “As the testing becomes more common, we’ll hopefully end up with studies with thousands of patients in them. We’re going to start getting answers to hard questions.”

A version of this article appears in print on August 7, 2014, on page A18 of the New York edition with the headline: Study Shows Third Gene as Indicator for Cancer.
© 2014 The New York Times Company

Monday, August 4, 2014

Link Between The Pill and Breast Cancer, Another Study

This has been a debate for a long time: Does taking oral contraceptives increase your risk of developing breast cancer? Without looking at the details of the study, let's review a few facts.
Everyone has cancer cells in their body. The question is, what makes them wake up and start to divide and spread? (Cancer was named for the zodiac sign Cancer- the Crab- because of how it crawls and spreads.)

A normal breast, without medication, goes through hormonal changes depending upon a woman's menstrual cycle.  It is a natural process. When you introduce hormones to "trick" your body into a false hormonal state, a state making the implantation of an embryo impossible, the breast tissue is affected by the changes. Do these changes cause breast cancer? No one knows for sure, but when looked at it from a distance, one can see that it certainly opens the door to the possibility of it somehow changing the breast tissue. Whether or not it changes to cancer is the question, one that clearly needs to be better understood.

From the ATLANTIC:

The Link Between Birth Control Pills and Breast Cancer

By Olga Khazan, THE ATLANTIC

The birth control pill is regularly hailed as one of the greatest medical advancements for women. Breast cancer, meanwhile, is considered one of the biggest health threats.

The only problem? There’s some evidence that the first increases your risk of the second. A new study out today suggests that having recently taken birth control pills increases breast cancer risk by about 50 percent. Women who were on a formulation of the pill with an especially elevated level of estrogen nearly tripled their risk of getting breast cancer, and a pill with even a moderate amount of the hormone increased the risk by about 60 percent.

For the study, published in the journal Cancer Research, scientists at the Fred Hutchinson Cancer Research Center and the University of Washington in Seattle followed 1,102 women diagnosed with breast cancer, most of whom were in their 40s. Rather than rely on self-report data, the researchers dug into the women’s pharmaceutical records to determine the exact oral contraceptives they were taking.

They divided the types of pills into three categories: Those formulated with a low level of synthetic estrogen, or about 20 micrograms of ethinyl estradiol; those with a moderate dose, or 30 to 35 micrograms of ethinyl estradiol or 50 micrograms of mestranol; and those with a high dose, or 50 micrograms of ethinyl estradiol or 80 micrograms of mestranol. Estradiol is one of the two main chemicals in the pill, along with progestin.

Overall, women who recently took high-estrogen-dose pills were 2.7 times more likely to have breast cancer, while those who took moderate-dosed pills were about 1.6 times more likely. There was no increased risk for the low-dose pills.

Two specific types of pill formulations increased cancer risk the most: Those containing ethynodiol diacetate (which are sold as Continuin or Femulen) increased the risk 2.6 fold, and triphasic combination pills containing 0.75 milligrams of norethindrone (sold as Ortho 75) increased the risk 3.1 fold.

Estrogen acts as a signal to the breasts to stimulate the growth of epithelial cells. When there’s too much estrogen, “you're giving a higher signal than what's normally there,” said Rowan Chlebowski, an oncologist at the University of California Los Angeles and a spokesman for the American Association for Cancer Research. “Estrogen normally makes the breast proliferate—women get larger breasts. A few proliferations could allow the growth to continue in an unregulated way.” That unregulated growth, in turn, could become a cancerous tumor.

The results are consistent with past studies that have found that breast cancer risk increases slightly with some oral contraceptive pills, though other studies have not found such a link.

As with most things OB-GYN related, that’s frustratingly confusing. The pill is essential; not getting cancer is too. How do you choose what's more important—a lifetime of easy reproductive autonomy, or ratcheting down your risk of a deadly disease by marginal amounts?
The caveats to this study are in some ways just as important as the findings:

    •    The high-dose pills are incredibly uncommon. “I haven't seen a woman in 20 years who was on 50 or 80 micrograms. It's really uncommon, and it's not something that I prescribe,” Owen Montgomery, chairman of the department of obstetrics & gynecology at Drexel University in Pennsylvania, told me. Most of these women have specific medical issues that necessitate being on a high-dose pill, or they’ve found that their side-effects on other formulations of the pill are just too debilitating to keep taking them. Women might take a higher-estrogen pill if they have extreme breakthrough bleeding, for example. Only half of one percent of women were using the high-dose pills by the last phase of the study, which took place from 2005 to 2009.

    •    The cancer risk returned to normal for women who stopped using birth control pills. The elevated risk was only found for women who had taken the pill within a year.

    •    Breast cancer is already really rare—a woman’s risk of developing it at age 40 is only about 1.5 percent, and it’s only 2.38 percent at age 50. Increasing either of those numbers by even a factor of three makes a difference, but not much of one. Even the study’s author, Elisabeth Beaber, a staff scientist at the Fred Hutchinson Cancer Research Center, said the findings aren’t enough to suggest you should change your prescription if you do happen to be taking one of these high-dose pills.

    •    The pill has cancer-fighting effects, too. It’s been shown to protect slightly against ovarian and endometrial cancer. So if you have a family history of endometrial cancer rather than breast cancer, a higher-dose pill might still be worth taking.

    •    Finally, all medicines carry risks. “Every time I prescribe something for one of my patients, there's always a balance between risk and benefit,” Montgomery said. “If aspirin came with a package insert, you'd be scared to death to take aspirin.”
For Montgomery, all this study shows is that, “you have to make sure that with your patient, for her unique history, that you use something where the benefit outweighs the risk. For the vast majority, the usefulness of the pill outweighs the risk by a huge margin.”
And since the pill is still America’s most popular contraceptive method, despite decades of yes-it-does-wait-no-it-doesn’t cancer risk research, it seems many women agree.

This article available online at:
Copyright © 2014 by The Atlantic Monthly Group. All Rights Reserved.

Friday, July 25, 2014

What a night

Sunday, July 20th, 2014 had perfect weather. The bright white tent was filled with colorful table linens and fresh flowers from the gardens. Food tables were set up by the finest restaurants, caterers and bakeries in the area and we even had a big barbeque blazing on the far side.

The guests mingled, sipped drinks, ate, sat under the tent or on garden chairs set up on the sweeping lawn behind Christ Church Oyster Bay.

At 8:15 the award ceremony began and our honoree and 2014 Alice Roosevelt Longworth recipient, Marguerite Casparian, accepted her well deserved recognition for ten years of unparalleled service to the Oyster Bay Community.

This was followed by the models, our Warrior Angel Survivor Models, who were accompanied by their heroes- their caregivers. Before each model stepped onto the runway, her tribute to her hero was read. Cheers, tears, and standing ovations followed. When the last model finished, the event turned to the second theme of the evening. We were saluting the Heroes-Our Caregivers, and we were remembering what happened 45 years ago that same evening on July 20th in 1969 when man first walked on the moon. This was followed a few weeks later by a little gathering up the New York State Thruway called Woodstock, and over in London, the Beatles were busy recording Abbey Road. At the same time, Paul Simon wrote, "A Bridge Over Troubled Water." What a summer that was. Heroes, love, peace and the perfect song that epitomizes what our heroes mean to us, getting us through our troubled times.

We turned the night over to the amazing Mostly Moptop Band, and the dancing began and didn't end for a very long time....

Everyone present has reported this was the best party the No Surrender Breast Cancer Foundation ever held. We agree. We also wish everyone could have been there. To give you a taste- take a look at our party here:

A very special thank you to Christ Church, Mostly Moptop, Birch Lifestyle Boutique, JMclaughlin, Periwinkles, Christina's Epicure, Jack Halyards, Suzie Cakez, The Coach, Country Plaza Caterers, Mario's and Bagel Boss.

Tuesday, July 8, 2014

Generous Grant That Will Help Us All

As readers of this blog know, we are strong advocates of the work being done at the Cold Spring Harbor Lab. If ever there was  a research institution that holds the key that will unlock the cure to cancer and other disorders, it is this group of dedicated scientists.

A wonderful, philanthropic couple have shown their support of the lab in a big way. This money will help move the innovative research forward and will make a difference in all of our lives.

We applaud Mr. and Mrs. Simons.

Simonses give $50 million to Cold Spring Harbor lab

July 7, 2014 by Delthia Ricks, Newsday

A Long Island couple has donated $50 million to Cold Spring Harbor Laboratory in the hope of contributing to the precision analysis of an enormous amount of molecular data being generated by human genomics, tumor biology and the genetics of autism.

The gift from hedge-fund investor James Simons and his wife, Marilyn, of East Setauket, will establish the Simons Center for Quantitative Biology on the lab's campus.

Quantitative biology is an emerging interdisciplinary field that utilizes fundamental concepts from physics, mathematics, computer science and chemistry to better analyze biological data.

The gift will allow Cold Spring Harbor scientists to expand their work and explore vast areas of biology, aiding in the understanding and treatment of numerous disorders.

"It's a transformative gift, something that will really enable the quantitative biology program to recruit a lot more people than we anticipated and support their research," said Dr. Bruce Stillman, the laboratory's president.

Quantitative biology is vital, Stillman added, because it allows other areas of science to better elucidate biological findings. "We don't want to reinvent things that have already been invented, such as algorithms," Stillman said. "But we want to use algorithms to understand biology and medicine. I am hopeful that we will add to the development of new algorithms that will benefit everybody."

Renee Fister, an officer with the Society for Mathematical Biology, which promotes interaction between the math and biological science communities, said, "This is a substantial gift, and that means they have the people and the mechanisms in place to make important contributions."

David Usher, a professor of quantitative biology at the University of Delaware, also applauded the donation and explained that the discipline is adding to the understanding of a vast range of biological systems.

Pharmacokinetics, the study of how medications are absorbed, metabolized and excreted, is an area that has long benefited from advances in quantitative biology, Usher said.

Cold Spring Harbor Lab's new center will be chaired by Adam Siepel, an associate professor at Cornell University who has directed the doctoral program in computational biology. He joins the lab in September.

Stillman, meanwhile, sees the donation as filling an enormous void in scientific funding.
"Philanthropic support of science is becoming increasingly necessary and important," he said, "and gifts of this magnitude allow programs like ours to be supported."

He added that after the completion of the Human Genome Project more than a decade ago, federal money for basic biological research dropped 22 percent, which has meant a loss of funding for numerous investigators.

"In inflation-adjusted dollars, that's enormous," Stillman said, noting federal funding has remained flat for some scientific enterprises, nonexistent for others.

The Simonses' donation is the third they've made in recent years to fuel scientific enterprise on Long Island. In 2011 they donated $150 million to Stony Brook University, and in 2008 they gave the school $60 million.

James Simons was chairman of Stony Brook's mathematics department from 1968 to 1976 and is credited with discovering the so-called Chern-Simons invariants, which have had wide use in theoretical physics.

Marilyn Simons, president of their philanthropic foundation, holds a doctorate in economics. Her husband founded a hedge fund after his years in academia."Jim and I have been consistently impressed by the commitment of Cold Spring Harbor Laboratory's board, management and faculty to excellence in biological research and education," she said in a statement Monday.

"We are proud to provide financial support that allows this institution to recruit outstanding scientists like Dr. Siepel to pursue the most innovative research in cancer, neurobiology, genomics and quantitative biology."