Monday, December 19, 2011

You are never too young

Miss Venezuela, age 28, died of breast cancer today.  Twenty-eight. For anyone who doesn't realize how incredibly vital our Before Forty Initiative is, perhaps this will put it into perspective for you.


Former Miss Venezuela dies of breast cancer at 28
Published: December 19, 2011 4:51 PM
By THE ASSOCIATED PRESS


CARACAS, Venezuela - Former Miss Venezuela Eva Ekvall, whose struggle with breast cancer was closely followed by Venezuelans, has died at age 28.

Her family said Ekvall died Saturday at a hospital in Houston.

Ekvall was crowned Miss Venezuela at age 17 in 2000, and the following year she was third runner-up in the Miss Universe pageant in Puerto Rico. She went on to work as a model, actress and television news anchor.

She also authored a book, "Fuera de Foco" ("Out of Focus"), about her struggle with cancer, which included images by Venezuelan photographer Roberto Mata.

She told the newspaper El Nacional in an interview last year after the book was published that "I needed to send the message of the need for cancer prevention."

On the cover was a portrait in which she appeared with makeup and her head shaved. The book also included images of her while going through chemotherapy.

"I hate to see photos in which I come out ugly," Ekvall told El Nacional. "But you know what? Nobody every said cancer is pretty or that I should look like Miss Venezuela when I have cancer."

At the time, she was hopeful of overcoming cancer and wanted to write more.

Ekvall's family said in a statement Sunday that her remains were being cremated in Houston on Monday and that a service is to be held in Venezuela once her remains are returned to the country.

Ekvall said in a 2007 interview published in Venezuelan news media that although her mother is Jamaican and her father is American of Swedish and Hungarian descent, "I feel more Venezuelan than anybody."

She was married to radio producer John Fabio Bermudez and had a 2-year-old daughter.

Her death brought an outpouring of condolences from Venezuelans, including from some prominent artists and politicians.

One drawing posted on Twitter depicted her as an angel with white wings and a pink ribbon on her chest.

Ekvall's husband posted a photo on Twitter Sunday showing a close-up of his hand holding hers, resting on a bed, with the words "Always together ... I love you wife."

Wednesday, December 7, 2011

Updates from San Antonio

We will provide updates every evening of the 2011 San Antonio Breast Cancer Symposium.
Tonight's review:

2011 SAN ANTONIO BREAST CANCER SYMPOSIUM NEWS ROUNDUP

December 7, 2011

Today's abstracts reaffirm the benefits of using Zometa with endocrine therapy to prevent recurrence. There is now a test for recurrence risk in DCIS patients. The poor prognosis of overweight women is further studied. And, directly in line with our Before Forty Initiative, Hispanic women are diagnosed younger than non-hispanics and are more likely to develop a very aggressive, non-responsive form of Triple Negative Breast Cancer. They have a high mortality rate. Imagine if our Before Forty Initiative was able to help these women? We are working hard to do just that. Abstracts below. More to follow tomorrow.


Please go HERE for full report

Tuesday, November 22, 2011

Now it's Canada's Turn

Remember the "Task Force" that released the report last year that US women should not get early breast cancer screening, in fact, they should only begin at the age of 50 and then do it every other year? Now they are after Canadian women with the same deadly message...here
 
Our Before Forty Initiative needs your support now more than ever. Women's lives are at stake.
Help us help those who will be affected by the consequences of "waiting."


THE BEFORE FORTY INITIATIVE

Friday, November 4, 2011

An Easy Way to Help Us

Shopping online for the holidays? Searching for that perfect gift or getaway?
Please use GOOD SEARCH and GOOD SHOP and they will donate to the No Surrender Breast Cancer Foundation!
It costs you nothing, but helps us a lot!
Thank you!!

   
GoodSearch: You Search...We Give!
         

Tuesday, October 25, 2011

Natural Weapon Against Triple Negative Breast Cancer

Something so simple.... nature healing nature.... Will this be the answer like mold was to penicillin?


Oncolytic Virus Kills Tumor in Triple-Negative Breast Cancer
Caroline Helwick, Medscape


October 25, 2011 (San Francisco, California) — Laboratory studies conducted at the Memorial Sloan-Kettering Cancer Center in New York City suggest that triple-negative breast cancer (TNBC) might respond to treatment with an oncolytic agent.

The findings were reported here at the American College of Surgeons 97th Annual Clinical Congress.

"We found that [the mutant herpes virus] NV1066 is an effective oncolytic agent against triple- negative breast cancer in vitro and in vivo," said Sepideh Gholami, MD, a research fellow in the laboratory of Yuman Fong, MD, which is considered to be at the forefront in oncolytic viral therapy
research.

"Oncolytic viruses are attractive therapeutic agents that destroy tumor cells without the accompanying destruction of normal cells," she said. The mitogen-activated protein kinase (MAPK)signaling pathway is known to be important in TNBC, and activated (phosphorylated) MAPK signaling has been shown to mediate efficient replication of NV1066 through the deletion of the delta gamma(1)34.5 gene.

In other words, she said, TNBC cells have high levels of phosphorylated MAPK, a protein that promotes tumor growth and contributes to resistance to current therapies. The herpes virus specifically targets cells that overexpress this protein, which is the rationale for this approach. The study aimed to determine whether NV1066 could kill TNBC cells effectively. The researchers also examined the functional effects of NV1066 on the MAPK signal transduction pathway during viral infection.

Dr. Gholami and colleagues infected 5 different TNBC cell lines with the NV1066 herpes simplex virus. After treatment with the virus, the most sensitive cell lines demonstrated a 90% cell kill rate within 1 week; the less sensitive lines demonstrated a 70% cell kill rate.

In addition, sensitive cell lines expressed higher baseline levels of phosphorylated MAPK than resistant cell lines, and viral infection caused the downregulation of phosphorylated MAPK by 48 hours, she reported.

"TNBC cells support efficient viral replication, with over 1 million copy numbers observed, which is more than a 1000-fold increase," she said.

"Since baseline phosphorylated MAPK levels positively correlated with sensitivity to NV1066, they might therefore be used as a clinical marker for selecting patients for viral therapy," she suggested.


Tumor Regression Almost Complete
The researchers created flank tumors and injected them with NV1066 or a control compound. Within 5 days, tumor volume significantly decreased in the experimental group; within 3 weeks, they observed "near-complete tumor regression," Dr. Gholami reported.

Monday, October 24, 2011

Femara Beats Tamoxifen


Aromatase Inhibitor, Letrozole (Femara)

FRIDAY, Oct. 21 (HealthDay News) -- The breast cancer drug letrozole, marketed as Femara, may be more effective than tamoxifen at preventing the return of breast cancer and improving survival among older women with hormone-sensitive breast cancers, a new study reports.

In the study, published online Oct. 21 in The Lancet Oncology, the researchers updated data from an ongoing study of about 8,000 women, which compares the two drugs alone as well as the use of both Femara and tamoxifen sequentially.

Femara outperformed tamoxifen in terms of breast cancer recurrence and survival, the study found. Moreover, giving Femara alone to women was more effective than giving it sequentially following tamoxifen. The new study was partially funded by Novartis, the drug company that makes Femara.

The hormone estrogen feeds hormone-sensitive cancers, and blocking it may help stave off a recurrence. Femara is part of a class of breast cancer drugs known as aromatase inhibitors. These drugs block the body's production of estrogen via the enzyme aromatase. Tamoxifen is a selective estrogen receptor modulator, which means that it acts like estrogen in certain tissues, but not in others, namely the breast. Aromatase inhibitors are given alone or in combination with tamoxifen.


After an average eight years of follow-up, the team of researchers from the United States, Europe and Australia found that women who took Femara for five years after breast cancer treatment had a "20 percent reduced risk of their breast cancer coming back and were 21 percent less likely to die, compared with women given tamoxifen alone," one of the lead authors of the study, Meredith Regan of the Dana-Farber Cancer Institute in Boston, explained in a journal news release.


Neither sequential treatment of tamoxifen followed by Femara, or in the reverse order, significantly decreased the likelihood of relapse or death compared to Femara alone, the team reported.

"Femara alone is the best way to go," said Dr. Stephanie Bernik, chief of surgical oncology at Lenox Hill Hospital in New York City. "The hope was that the combination would improve survival, but this was not the case," said Bernik, who was not involved with the study.


Breast cancer survivors who are being treated with tamoxifen should discuss their options with their doctor. "Talk to your doctor about switching to an aromatase inhibitor," Bernik said. "Tamoxifen is still an excellent drug, but the aromatase inhibitors are better. If the plan was to switch drugs, you may want to talk to [your] doctor about going straight to the aromatase inhibitor," she added.

Dr. Hannah Linden, a medical oncologist at the Seattle Cancer Care Alliance, said that many women don't want to take these drugs because of a fear of side effects or the desire to put breast cancer behind them. "The study stresses the importance of taking these medications," she said. This is not to say they don't have their share of side effects; they do, she noted.

Serious side effects seen with Femara include bone fractures and increases in cholesterol levels. Some research has suggested that aromatase inhibitors may also increase the risk for heart disease. Tamoxifen side effects may include blood clots, strokes, uterine cancer and cataracts.

Dr. Maura N. Dickler, a breast cancer medical oncologist at the Memorial Sloan-Kettering Cancer Center in New York City, said that aromatase inhibitors have been her go-to drugs for women with estrogen-positive breast cancers for a while.


Some women report joint pain and other nuisance side effects from aromatase inhibitors and have to go back to tamoxifen, Dickler said. "In these cases, getting in an aromatase inhibitor for some time is beneficial," she noted. "We can individualize treatment based on the side effects and the tolerability for each woman."

Cost may be an issue for some women, but the gap in price between the two drugs is narrowing, Dickler added. Femara is now available as a generic, which helps reduce its costs, but tamoxifen is still probably less expensive, she said.

Overall, "this is an exciting update with longer follow-up," Dickler said of the study. Since last results were reported in 2005, there was a 32 percent increase in the number of women who had a relapse. "These women can do well for a long time and still relapse many years later," she said. "It just reminds us that women relapse during year five through 10 as much as zero through five. Breast cancer is an indolent disease and you can remain disease free for a long time, but relapse can still happen."

To learn more about endocrine therapy post breast cancer treatment, read: No Surrender: Hormonal/Endocrine Therapy

Friday, October 14, 2011

Our Party

On October 1st we celebrated the Second Annual There and Back: A Celebration of Survival...
Here is the video on our main web page HERE

Tuesday, October 11, 2011

Not all vitamins are good for you

From New York Newsday

Vitamin-breast cancer link eyed in studies

October 10, 2011 by DELTHIA RICKS / delthia.ricks@newsday.com
Certain supplements may prove detrimental to women who've survived breast cancer, while older women may be at a slightly elevated risk from regular use of vitamin and mineral pills, medical investigators have found in two separate investigations.

In a study of 2,300 women, researchers at Columbia University in Manhattan found women treated for early stage breast cancer and who took vitamin A, lutein or beta-carotene, supplements known collectively as carotenoids, faced a greater risk of dying from recurrent cancer -- and virtually all other causes of death.

By contrast, those treated for early-stage breast cancer who routinely took vitamins C or E had a lower recurrence risk after five years than those who didn't take the vitamins. Vitamins C and E are known as antioxidants that protect cells.

"My main take home message here is that we're seeing antioxidant supplements working in one direction and the carotenoids working in another," said Dr. Heather Greenlee, who led the examination.
A second study in the Archives of Internal Medicine involving 38,000 women reported by researchers in Finland found U.S. women 75 and older who consumed any dietary supplements, including multivitamins, folic acid, iron and copper, had a 2.4 percent increased risk of death than those avoiding the pills. There was no risk associated with calcium and vitamin D. 

Greenlee said it's unclear why vitamins C and E appeared to have a beneficial effect on cancer survivors -- if they did at all. It is possible, Greenlee said, that it wasn't vitamins C and E thwarting a recurrence, but other healthy behaviors the women shared that helped them avoid a second bout with cancer.

She said her research tried to help physicians guide breast cancer patients about vitamin use.
"We are not referring to vitamin A consumed in foods," Greenlee added. "Here, we are referring to supplements."

She noted that neither the American Cancer Society nor the American Institute of Cancer Research recommend vitamin supplements as a way to avoid cancer. A growing body of scientific evidence suggests supplements can be dangerous, Greenlee said.

Leah Pasquarella, chief clinical dietitian at Southside Hospital in Bay Shore, said the United States has evolved into a pill-popping culture where people think vitamins are beneficial without questioning how they affect the body. "I think we rely on them too much as a substitute for healthy foods and that's a problem," Pasquarella said.

Supplements, she added, are not regulated by the Food and Drug Administration, and potencies differ from one manufacturer to the next.

In Greenlee's research, findings were based on questionaires answered by women who had been diagnosed with early-stage breast cancer. More than 80 percent said they took at least one supplement containing antioxidants, either as a multivitamins or as single pill within two years of diagnosis.
Women who said they took a single supplement of either vitamin C or vitamin E six to seven days a week had a lower risk of cancer recurrence. Greenlee's analysis is reported in the current issue of the journal Cancer.

Sunday, September 11, 2011

WHY WE NEED THE BEFORE FORTY INITIATIVE!

WHY WE NEED THE BEFORE FORTY INITIATIVE! If a young woman waits to find her lump by palpation- it is a more advanced stage... read this out of the ASCO conference:

Study Supports Palpation, Mammography Regardless of Age
Originally from Elsevier Global Medical News. 2011 Sept 6, S London

SAN FRANCISCO (EGMN) - Many breast cancer patients would have more advanced disease at diagnosis and face harsher treatment if recently updated screening guidelines of the U.S. Preventive Services Task Force were widely adopted, suggests a retrospective cohort study of more than 5,000 women with breast cancer in Michigan.

Study results, being reported this week at a breast cancer symposium sponsored by the American Society of Clinical Oncology, show that nearly a third of the women's cancers were detected by palpation. The guidelines do not advocate for self-exams at all and question the usefulness of clinical breast exams after age 40.

Additionally, nearly half of the cancers in women younger than 50 years were detected by mammography, while the guidelines now recommend against this practice in the 40- to 49-year age group.

Women with palpation-detected cancers had later-stage disease and were significantly more likely to undergo mastectomy and receive chemotherapy than were those with mammography-detected cancers.
"Annual screening mammograms and evaluation of palpable breast masses are important tools in breast cancer detection," second author Dr. Jamie Caughran said during a premeeting press briefing from the American Society of Clinical Oncology (ASCO).

She declined to say whether the study's results contradict the U.S. Preventive Services Task Force (USPSTF) guidelines, as the investigators did not have adequate information on the women's screening history.

But "we take this data to conclude that you're better off if you can ... have your cancer detected by mammography - that you are more likely to have options and less likely to need aggressive treatment. So ... we would support the rest of the societies that continue to recommend annual screening mammography starting at age 40," she said.

 Additionally, this study "highlights the still-significant number of women who present with a palpable mass that shouldn't be overlooked by physicians even if they have a negative mammogram," pointed out Dr. Caughran, medical director of the Comprehensive Breast Center at the Lacks Cancer Center in Grand Rapids, Mich. "So it just continues to reinforce what we believe is inherently true."
Dr. Andrew Seidman, moderator of the press briefing and a medical oncologist at the Memorial Sloan-Kettering Cancer Center in New York City, commented that the appropriate age for starting screening mammography remains controversial.

 "A lot of the debate and focus regarding the utility of mammography have been on overall survival and breast cancer-specific survival, and I certainly think that is the most important end point," he said, noting that the study speaks to another important end point - reduced intensity of treatment.

"As a medical oncologist or chemotherapist, I think this is a very important gain, independent of any potential survival benefit," he said. "Having less disfiguring surgery and the ability to deliver less chemotherapy based on the stage at diagnosis are for me a step forward."

This newest study will not quell the debate, according to Dr. Seidman. "Undoubtedly, this area will continue to remain an area of controversy for some," he said. "But certainly, women in this age group would be well served to know about this data."

 In the study, Dr. Caughran and her colleagues analyzed data from a statewide breast cancer registry managed by the Michigan Breast Oncology Quality Initiative, identifying 5,628 women who received a diagnosis of stage 0 to III breast cancer between 2006 and 2009. Their average age was 59.4 years.
In the cohort overall, 65.5% of breast cancers were detected by mammography, 29.8% by palpation, and 4.7% by other means.

Fully 90% of the cancers detected by palpation were detected by the patient herself, although "it's unclear if the patients ... were practicing regular breast self-examination or if these were incidental findings," noted Dr. Caughran.

When analyses were restricted to women younger than 50 years of age, 48.3% of breast cancers were detected by mammography, 46.1% by palpation, and 5.6% by other means.
Palpation-detected cancers were of later stages (P less than .0001) - two-thirds were stage II or higher - and were more often treated with mastectomy (45.8% vs. 27.1%, P less than .0001) and with chemotherapy (22.7% vs. 15.7%, P less than .0001).

Dr. Caughran and Dr. Seidman reported that they had no relevant conflicts of interest.

DIRECT LINK TO ARTICLE:http://www.oncologystat.com/news/Study_Supports_Palpation__Mammography_Regardless_of_Age_US.html

Monday, September 5, 2011

Ten.

Ten years, two cancers later...
Some Lessons by Melody Gardot

"Well, I'm buckled up inside
Miracle that I'm alive
Do not think I can survive
On bread and wine alone

To think that I could have fallen
A centimeter to the left
Would not be here to see the sunset
Or have myself a time

Well, why do the hands of time
so easily unwind?

Some lessons we learn the hard way
Some lessons don't come easy
And that's the price we have to pay

Well, some lessons we learn the hard way
They don't come right off and right easy
And that's why they say some lessons learned
We learned the hard way

Remember the sound of the pavement
World turned upside down
City streets unlined and empty
Not a soul around

Life goes away in a flash
Right before your eyes
If I think real hard, well, I reckon
I had some real good times

Why do the hands of time
So easily unwind?

Some lessons we learn the hard way
Some lessons don't come easy
And that's the price we have to pay

Well, some lessons we learn the hard way
They don't come right off and right easy
And that's why they say some lessons learned
We learned the hard way."




Ten years ago today, I could have fallen a centimeter to the left or to the right. I was told I may not see too many sunsets. But for some reason, I am here. The lessons I learned,  I learned the hard way. I made decisions and changed my life so I could be here for that woman who is like I was, on the pavement with the world turned upside down. I've met the most wonderful friends in the world. I've lost more sisters and cried more tears than I ever thought possible. Their lesson to me was to keep going, keep fighting, and keep the circle growing.

Ten years ago my surgeon turned in his chair and handed me a pamphlet  and said, "Let me tell you about your cancer." Chemo, surgeries, radiation, my first book, my website, a second cancer, chemo, surgeries, radiation, my foundation, my second book, and still learning the lessons I need to know to keep on keeping on.

Thank you to everyone who has been a part of my life since that time... you know who you are. Many of you know me just as nosurrender or g. But you know me, probably better than the ones who know me as Gina.


10 Lessons Learned


1.  Never accept an absolute based on abstract, out-dated stats. You are a snowflake, unique and unlike anyone else.


2.  Learn everything you can. Read every medical book, research study and drug guide before you make any decision.


3.  Don't rely on your doctor to cover everything. Be your own best advocate. Have copies of everything.


4.  Don't rely on anyone. You can't hire someone to go through this for you. You have to do this one on your own. If you expect people will come through, you may be terribly hurt and disappointed. Expect nothing and then be surprised when someone actually shows up for you.


5.  Listen to your inner voice- it may be quiet, almost inaudible at first- but it is telling you that you CAN make it through this if you get your fear under control. You are stronger than you ever imagined you could be.


6. Take those first terror-filled weeks one second at a time. Do not project into the future. Just do what you need to do now and let tomorrow come when you are ready for it.

7.  Make plans. Plant the biggest garden ever if you are diagnosed in the Spring. If you are diagnosed in the Fall, plant as many bulbs as you can find. When your treatments are coming to a close, your victory garden will be a testament to your strength.



8.  Don't hide at home. Get out there and do things. Enjoy every part of your life. Wear pretty clothes to treatment. Pamper yourself so you will remember that underneath the surgery sites and chemo fog you are still you, a vibrant, beautiful woman.


9.  If you hear of someone who is not doing well, don't immediately put yourself into her shoes. You have your own specific pathology, your own special immune system. Stop yourself from asking the particulars of her cancer. It won't help you and it has no bearing on what your prognosis is. Be there for her. Put your arms around her and let her know she has a friend.


10.  Cancer is not pretty, pink, cute or sexy.  It is an enemy that must be destroyed. It's a knife fight, so bring a gun and  fight like hell. Never give in to it. Never let it into your heart. Never lose hope. Remember to laugh as much as you possibly can, because nothing pisses cancer off more. Love with all your heart. And above all, always and forever : No Surrender.

Sunday, August 21, 2011

Before Forty Expands It's Message to African-American Women

The No Surrender Breast Cancer Foundation's Before Forty Initiative has been working tirelessly on informing young, African-American women about their increased risk of developing the more aggressive type of breast cancer known as Triple Negative Breast Cancer. Not only do we advocate baseline screening should begin BEFORE the age of forty, a new study has shed light on another way to fight this disease from striking African-American women.

The study appeared here

African-American women who do not breastfeed their babies face a higher risk of getting an aggressive form of breast cancer than their counterparts who nurse, said a US study on Tuesday.
The analysis found that women who had two or more children faced a 50 percent increased risk of hormone receptor-negative breast cancer, one of the toughest kinds to treat.

But this higher risk was only present in women who did not breastfeed their children.
"African-American women are more likely to have had a greater number of full-term births and less likely to have breast-fed their babies," said Julie Palmer, professor of epidemiology at the Slone Epidemiology Center at Boston University.

"This study shows a clear link between that and hormone receptor-negative breast cancer."
Data for the research, published in Cancer Epidemiology, Biomarkers & Prevention, a journal of the American Association for Cancer Research, came from the Black Women's Health Study which has followed 59,000 women since 1995.

From 1995 to 2009, researchers found 457 cases of hormone receptor-positive breast cancer and 318 cases of hormone receptor-negative breast cancer among study participants.
Among those diagnosed with hormone receptor positive breast cancer, which also tends to occur more frequently in white women, there was no link to the number of children a woman had and whether or not she breastfed.

"Our results, taken together with recent results from studies of triple negative and basal-like breast cancer, suggest that breastfeeding can reduce risk of developing the aggressive, difficult-to-treat breast cancers that disproportionately affect African-American women," Palmer said.

According to the Centers for Disease Control and Prevention, about 35 percent of white women in the United States are breastfeeding their babies at six months of age compared to 20 percent of black women.

Breast cancer is expected to kill nearly 40,000 people (39,520 women, 450 men) this year in the United States, according to the National Cancer Institute. It is the second leading killer among women after lung cancer.


The No Surrender Take Home Message? Not only should screening begin at age 35 (or 30 for high risk women) but if you are a young, African-American mom, try to breast feed your baby for as long as possible.

Friday, August 19, 2011

About as Frightening As It Can Get

August 19, 2011

U.S. Scrambling to Ease Shortage of Vital Medicine

By GARDINER HARRIS/ The New York Times

WASHINGTON — Federal officials and lawmakers, along with the drug industry and doctors’ groups, are rushing to find remedies for critical shortages of drugs to treat a number of life-threatening illnesses, including bacterial infection and several forms of cancer.


The proposed solutions, which include a national stockpile of cancer medicines and a nonprofit company that will import drugs and eventually make them, are still in the early or planning stages. But the sense of alarm is widespread.

“These shortages are just killing us,” said Dr. Michael Link, president of the American Society of Clinical Oncology, the nation’s largest alliance of cancer doctors. “These drugs save lives, and it’s unconscionable that medicines that cost a couple of bucks a vial are unavailable.” 

So far this year, at least 180 drugs that are crucial for treating childhood leukemia, breast and colon cancer, infections and other diseases have been declared in short supply — a record number.
Prices for some have risen as much as twentyfold, and clinical trials for some experimental cures have been delayed because the studies must also offer older medicines that cannot be reliably provided.

On Wednesday, Dianne Nomikos, 65, went to M. D. Anderson Cancer Center in Houston for a 9 a.m. appointment to receive Doxil, a vital medicine for her ovarian cancer. She was told to go home and wait until new supplies arrived. 

“My life is in jeopardy,” she said through tears in a telephone interview. “Without the drug, who knows what’s going to happen to me?”

The Obama administration is considering creating a government stockpile of crucial cancer medicines. The Centers for Disease Control and Prevention already stockpile antibiotics, antidotes and other drugs needed in the event of a terrorist attack or earthquake.

Under one plan, the government would store the dry ingredients for cancer drugs and, in the face of a shortage, distribute them to hospitals, where pharmacists could mix them into injectable compounds.
Dr. Richard Schilsky, a professor of medicine at the University of Chicago, said the number of cancers diagnosed in a year was easy to predict. “So we ought to be able to make a pretty good estimate of the grams required to treat every patient in the country in any given year,” he said.

Legislation proposed in both the House and the Senate would give the Food and Drug Administration the power to demand that drug makers give early warnings of possible supply disruptions. Senator Amy Klobuchar, Democrat of Minnesota, said the idea behind the bipartisan bill came after she found that the agency had prevented 38 shortages last year after getting early alerts of problems at drug makers.

“I can’t say the drug companies are excited” about the proposed legislation, she said in an interview. “But we need to give the F.D.A. more time.”

A group of leading oncologists has started a not-for-profit drug company that it hopes will soon be able to import supplies of some of the missing medicines. The company will eventually manufacture the drugs itself, according to Dr. George Tidmarsh, a pediatric oncologist and biotechnology entrepreneur who will lead it. 

“We have a meeting with the F.D.A. next week,” Dr. Tidmarsh said. “This unfolding tragedy must stop, and right now.”

More than half the recent shortages have resulted because government or company inspectors found problems like microbial contamination that can be lethal on injection. Others have occurred because of capacity problems at drug plants or lack of interest because of low profits, according to the F.D.A. 

Doxil, the cancer drug Ms. Nomikos needs, is made by Johnson & Johnson. Monica Neufang, a company spokeswoman, said, “Our third-party manufacturer has had some manufacturing issues related to capacity.”

Heather Bresch, president of the generic drug giant Mylan, says the shortages grow out of a sweeping consolidation of the generic drug industry into a few behemoths that compete only on price and have foreign plants that are rarely inspected.

“The race to the bottom has led to an increase of products coming from plants in China and India that may have uncertain supply and may have never been inspected,” Ms. Bresch said. “If the F.D.A. was required to inspect foreign drug plants at the same rate it does domestic ones, we might not have so many of these shortages.” 

Ms. Bresch has helped to broker an agreement that would require the industry to pay $299 million a year for increased inspections of foreign drug plants, a deal that must be approved by Congress and one she says will prevent some shortages.

Top government officials have held a blizzard of meetings in recent weeks to tackle the shortage issue, and more are expected over the next month — including a public advisory meeting at the F.D.A. and hearings in Congress.

“Drug shortages represent a pressing public health issue, and we are actively working to understand the causes, the full scope of the problem in the U.S. and internationally, and possible solutions,” said Dr. Howard K. Koh, an assistant secretary for health.


A crucial problem is disconnection between the free market and required government regulation. Prices for many older medicines are low until the drugs are in short supply; then prices soar. But these higher prices do little to encourage more supply, because it can be difficult and expensive to overcome the technical and regulatory hurdles. And if supplies return to normal, prices plunge. 

Executives at Premier, a hospital buying cooperative, said that in April and May its members received hundreds of offers from obscure drug wholesalers to sell drugs in short supply at vastly inflated prices. Of the 636 offers that included a price, 45 percent were at least 10 times the normal rate and 27 percent were at least 20 times normal.

Such sales offers are legal as long as suppliers prove that they bought the drugs appropriately. Some wholesalers buy certain drugs in large quantities because they are betting there will be a shortage. The excessive buying can help make their predictions come true. “We never like to see a situation where people can profit off of a national crisis and engage in price gouging,” Mike Alkire, Premier’s chief operating officer, said in an interview.

Joyce Burke, 47, of Mooresville, N.C., has breast cancer and is worried that she might not be able to get Taxol, which is in short supply. A drug that might have been substituted for Taxol has a side effect that leads some patients to lose their fingernails.


“I was not looking forward to losing my fingernails,” she said.

On Thursday, she received her first dose of Taxol, and her doctor said he had secured enough of the drug to give her a second dose in a little more than a week. She will need four doses to complete the treatment.

“And I asked, ‘What happens if you can’t find the rest?’ ” Ms. Burke said. “It’s not nearly as effective if you switch drugs midway through.”

Thursday, August 18, 2011

Come Celebrate With Us


On Saturday, October 1, 2011 the No Surrender Breast Cancer Foundation is kicking off “breast cancer awareness month” with a look back at famous survivors over the centuries while celebrating women living with breast cancer today. To help set the theme, they will host their second annual “There & Back: A Celebration of Survival” at Christ’s Church in Oyster Bay. This historic church was where Teddy Roosevelt worshiped with his family. His eldest daughter, Alice, was a fashion icon, writer, designer, trendsetter and known for her indomitable spirit. She was also a breast cancer survivor. Alice Roosevelt Longworth embodies the No Surrender spirit and the party is a tribute to this incredible woman.

The event will feature the Warrior Angel Survivor Models, stunning women who are all breast cancer survivors. They will be modeling vintage fashions that reflect the clothing worn by famous survivors over the years such as Ingrid Bergman, Greta Garbo, Bette Davis, Hattie McDaniel, Betty Ford, Myrna Loy, Shirley Horn, Jennifer Jones, Rosalind Russell, Julia Child, and Nabby Adams, John Adam’s daughter who underwent a mastectomy without anesthesia 200 years ago, on October 8, 1811.

Starting from Nabby Adam’s experience, there will be a retrospective of the tremendous strides made in breast cancer surgery. What was once a disfiguring ordeal, has now become a work of art in the hands of this year’s recipient of the Alice Roosevelt Longworth Award and the gala’s Medical Honoree, Dr. Ron Israeli. Dr. Israeli has changed the lives of thousands of women through his incredible surgical talent. His empathy and unparalleled support of his patients makes the difficult journey through breast cancer a hopeful and positive experience. This is what the NSBCF strives to impart to its members and visitors. Many of Dr. Israeli’s patients are the models who make up the Warrior Angel Survivor Models.

The Foundation is privileged to announce that Miss Elizabeth Roosevelt is the Co-Honoree. A lifelong Oyster Bay resident, art historian, avid sailor and wonderful photographer, she will represent the Roosevelt family, and present the Alice Roosevelt Longworth Award to Dr. Israeli.

The party begins at 7 PM at Christ’s Church, 55 East Main Street, Oyster Bay and tickets are $100 each and $75 for those under the age of 29.

The No Surrender Breast Cancer Foundation is a 501 (C) (3) not for profit organization that helps women through their breast cancer from diagnosis to life post treatment. Their Before Forty Initiative raises awareness of the risk faced by young, African American women of developing Triple Negative Breast Cancer and is working ensure they get early baseline screening, before the age of forty, to find this aggressive type of cancer before it has a chance to spread. Their informative, comprehensive website is nosurrenderbreastcancerhelp.org.

Sponsorships and Journal participation is available. For more information about this event. For more information, contact us at nosurrenderevents @gmail.com. NSBCF, PO Box 84, Locust Valley, NY 11560

Wednesday, July 20, 2011

What About African American Women Under Forty?

The No Surrender Breast Cancer Foundation's most crucial program is our Before Forty Initiative which educates young, African American women about their increased risk of developing the aggressive form of breast cancer known as Triple Negative Breast Cancer. Young Caucasian women also develop this type of cancer as well, but not in the numbers that African American women do.  We encourage all young women to get early baseline screenings, BEFORE the age of forty. By doing this, a woman's doctor has a breast blueprint to work from for future screenings. Any slight change can mean a breast cancer caught at its earliest, most treatable stage.


This is particularly important for African American women who are disproportionately diagnosed with TNBC before age forty.

This a battle we are fighting. We have to fight doctors, insurance companies, government task forces, the American Cancer Society and other so-called breast cancer organizations. It has not been easy. But, we are No Surrender for a reason. We will not give up.

Recently, we applied for a regional grant from the Komen organization for this life saving initiative. Even though they state on their website the stats of the increased risk of African American women developing this aggressive type of cancer while they are young, they turned down our grant request because it" is against their guidelines: screening should not begin until after forty" - for everyone.

Today, Komen released a statement that they are thrilled that the leading medical organizations have reaffirmed that screening should begin at age forty, and they call it a "victory for women." We beg to differ. It is most certainly not a victory for young, African American women. In fact, this will now make our fight harder as we try to help them get insurance coverage for their baseline screenings before the age of forty.

It is simple math. It is also a proactive approach to fighting and surviving Triple Negative Breast Cancer- a very difficult cancer to beat. Why are we fighting other breast cancer organizations over this? Why don't they care about young, African American women who are being told to wait for screening that may be too late for them to survive the disease? How is this possible??

Komen has a slogan out about how Ms. Brinker "made a promise" to her sister, Susan, that she would end breast cancer. I also made a promise to my best friend, Ferne, who found her tumor too late, at 41. She was African American and had Triple Negative Breast Cancer. I promised her I would make sure that her story was told and other women like her would not put off screening so they would not have to suffer and die the way she did.

I am keeping my promise. I know that Ms. Brinker has done incredible work across the world for breast cancer- but what about women like Ferne? I would like to point out, according to a biography, Ms. Brinker, a breast cancer survivor herself, found her cancer at age 37 on mammogram. Early screening, before the age of forty, was important to her and she has survived her disease because of early detection.

I only wish Ferne had that opportunity. I know I benefited from early screening and found my Triple Negative Breast Cancer before 40. I want the same thing for everyone. No matter what color they are or what socio-economic background they are from. Ms. Brinker, I hope you will reconsider your guidelines.

Until then, we are asking all of you to please help us win this battle and make the investment in our Initiative, because we now have to fight even harder to save the lives of the young women who are risk of developing a most aggressive breast cancer that will not play fair and wait for them to turn forty before it shows up.

Please donate - we need you now, more than ever.

click HERE to Donate
click HERE to learn more about the Before Forty Initiative

Friday, July 8, 2011

Betty Ford, The Woman Who Changed Everything

Former First Lady, Betty Ford has died at the age of 93. She was an incredible woman who triumphed over  cancer and addiction. We owe her a great deal of both thanks and respect.

In 1974, just a month after her husband suddenly became president, she discovered she had breast cancer. She underwent a mastectomy and did not hide it. As a result, she took the whisper out of the words, "breast cancer." She was our first, true advocate. Because of her example, other high profile women opened up about their own personal battles. Barbara Bel Geddes had a radical mastectomy around the same time as Mrs. Ford and made sure it was included in the storyline of her hit television show, Dallas. We all watched as Miss Ellie fought her cancer and her emotions about her body image and whether her husband would still desire her. This had never been seen or discussed before.

All of this led to empowering women to speak with their doctors about getting screened themselves, a topic that was not as  open as it is today. The birth  of the breast cancer advocacy movement can be traced to Mrs. Ford and Ms. Bel Geddes. Soon, radical mastectomies were stopped and less drastic and deforming surgeries were perfected leading to the beautiful reconstructive surgery available today.

Mrs. Ford did not keep anything secret for long. She was also an alcoholic. After she overcame her addiction, reached out to those who needed to break the bonds of substance abuse. The Betty Ford Clinic is famous for the work it does and the lives it has changed... all because Mrs. Ford wanted to help others yet again.

She may not have been flashy or known for her designer outfits. She was soft spoken and stood by her best friend, her husband, through good and bad times as he stood by her through her struggles. Quietly, without looking for credit, she went beyond herself to help others conquer what she had endured before them.

A quite warrior who won many wars, she was the friend you didn't realize you had. Who among us has not in some way been touched by breast cancer or substance abuse? Because of Mrs. Ford, there is no shame or embarrassment anymore. Courage, dignity and the knowledge that you can fight any battle is her legacy to us. We are incredibly lucky she was there for us. May she rest in peace.

Thank you, Mrs. Ford.

Thursday, July 7, 2011

Proof Positive: Regular Mammograms, Especially Early Ones, Save Lives. Period.

ABC has just released the report out of Sweden that regular mammograms, particularly those starting young, save lives. There is no question about it. So the next time your doctor tells you that you are "too young" or your breast are "too dense" or that the ACS or Komen do not recommend early, regular screenings- refer them to this report.

The No Surrender Breast Cancer Foundation is dedicated to providing the vital information to young women. This study proves that not only those at risk for Triple Negative Breast Cancer will be saved, but those who will go on to develop slower growing, estrogen responsive tumors will have fewer deaths through early, long-term screening. It is imperative  to GET SCREENED BEFORE THE AGE OF FORTY and continue yearly follow-up.

We can't do it alone. Studies like this will help us. You need to help us too. Spread the word. Donate to our foundation so we have the funds to get the message out there.


We can no longer afford to have these so-called breast cancer groups dictating when a woman "should" be screened. It is a matter of surviving the disease for a long period of time over finding a tumor that is too far gone to be stopped.

Think about this, please. And if you can, help support us.

Thank you.


Mammograms Reduce Breast Cancer Deaths, Period -- Swedish Study Finds

Mammograms save lives, period, end of story. But it takes decades to appreciate just how many.
That's the takeaway from the longest-running mammogram study -- which followed more than 100,000 Swedish women for 29 years -- that many doctors believe will put the recent ruckus over the frequency of breast cancer screening to bed.


The researchers found that seven years of mammograms made for 30 percent fewer breast cancer deaths years down the road, when compared with women who didn't receive mammograms.

"I think this study indicates the absolute benefit of screening in terms of breast cancer deaths prevented," says Stephen Duffy, a professor of cancer screening at Queen Mary, University of London, and lead author of the study.

While the American Cancer Society had long recommended that women over the age of 40 receive yearly mammograms, the U.S. Preventive Services Task Force challenged this recommendation in 2009, calling into question whether the number of lives saved were worth the cost of such regular mammograms and the increased possibility of false positives. In light of the possible adverse effects of yearly screening, the Task Force recommended that women get screened every other year starting at age 50, and stop mammogram screening altogether after age 75.

But the Swedish study, published Tuesday in the Journal Radiology, suggests that when women are followed over the course of decades (in this case 29 years) instead of the seven or so years that many past studies have looked at, mammograms may save many more lives.

Among the 133,065 women studied, one breast cancer death was prevented for every 414 to 519 women screened.

"The longer follow-up period, three decades, is crucial. It is important to have this length of time to allow the benefits of screening to become apparent," says Dr. Laurie Margolies, chief of breast imaging at Mount Sinai Medical Center in New York, who was not involved in the Swedish study.

This long-term view is important, in part because certain types of breast cancer can take decades to become lethal, says Dr. Richard Ellis, co-director of the Norma J. Vinger Center for Breast Care in Wisconsin.


"A less aggressive, slow-growing cancer could take 15 to 25 years before it spreads to a vital organ, resulting in a breast cancer death," he says. "Thus, a shorter-term follow-up study will likely account only for breast cancer deaths due to the more aggressive cancers. … That is why studies with shorter follow-up … understate the true value of screening mammography."

The Swedish Study and Mammogram Debate
The recent study looked at more than 100,000 women in two counties in Sweden. Beginning in 1977, researchers randomly assigned half the women to receive seven years of regular medical care that did not include mammograms, and the other half to receive regular mammograms -- every two years for those age 40 to 49 and every three years for those age 50 to 74.

When the seven-year trial ended, the researchers followed up with the women for 22 more years. After seven years, all the women were offered mammograms, but only those cancers detected during those first seven years were included in the study's results.

The researchers found that the preventive effect of mammograms became more apparent as the years went by: 10 years after the study began, 71 lives had been saved because of the screenings; 29 years later, 158 lives had been saved, study leader Duffy says.

 

The Value of Regular Screening


Critics of frequent mammograms have generally focused on the relatively few lives saved per thousands of screenings.

According to a 2009 analysis published in the Cochrane Collection, an international health care network, one in 2,000 women will have her life prolonged by 10 years because of a mammogram, but another 10 healthy women will undergo unnecessary breast cancer treatment, and 200 women will endure significant psychological stress because of a false positive result -- they'll be erroneously told they have breast cancer when they don't.

The researchers who studied the Swedish women challenge such findings, suggesting that it takes nearly half as many mammograms to save a life, perhaps fewer if mammograms were given continually throughout middle and old age -- a rate of prevention that study leader Duffy and other breast cancer experts argue makes screenings worth the risk of possible adverse effects from radiation and false positives.

For every 1,000 to 1,500 mammograms given in this study, one breast cancer death was prevented, and if the initial screening period had lasted 10 years instead of seven, only 300 screenings would have been needed to save one life, the researchers reported.

And this was found in a population that received mammograms half as frequently as the American Cancer Society currently recommends for women in the U.S. If the Swedish women had been screened every year instead, there would have been a more "dramatic" reduction in the number of breast cancer deaths, says Dr. Peter Jokich, head of the mammography Center at Rush University Medical Center in Chicago.


Overall, breast cancer experts believe this study out of Sweden supports the message they've been sending all along: Regular mammograms save lives. Period.

Sunday, July 3, 2011

Milking It

I was at a party the other evening and the hostess had beautifully decorated cookies with frosting every color of the rainbow. She passed the platter around and asked each guest which color they wanted. When she got to me, she handed me the pink cookie and said, "We know what one you are! You're our breast cancer girl!" I put the cookie on my dessert plate and left it there, untouched.

As I looked around the table of 10 women, I realized that here on Long Island, 1 in 7 women will develop breast cancer. I was already spoken for. That left at least one or two of the women eligible for the pink cookie in the future or maybe right at that moment and they don't even know it yet.

On this rainy day before Fourth of July, I decided to take advantage of the sales advertised at Lord and Taylor because I had a gift certificate given to me for my birthday. I desperately need a new bathing suit top because I am never the same size from year to year, surgery to surgery. I was quite disappointed at the selection and walking past the cosmetic counter, near accessories, there it was, gleaming before me:  The "Promise Me" Shrine of Goods. You could buy the perfume to smell like breast cancer. There were nick knacks to make your home look more cancer-y. And of course the pink accessories to dress the part, so you, too, could someday offer a survivor a pink cookie in proper style. Note to the "Promise Me" Peeps: Breast Cancer doesn't smell like roses and jasmine. It smells like metal, from the Heparin they use to flush the port implanted in your chest;  plastic tubing; blood; disinfectant; alcohol; cardboard and salt from your tears.

Driving home, listening to NPR, there was a fascinating interview with an Egyptian Freedom Fighter. He was quite distressed about how corporations have infiltrated the fledgeling democracy to put their own spin on it and profit from it. Cleansers are advertised using photographs of the citizenry cleaning up Tahrir Square after the regime fell. A triumphant fist holding up a pair of sunglasses instead of a flag was hawking a hotel and promoting tourism. The Freedom Fighter asked, "What about the fight? The sacrifice? What these people accomplished?" Nary a billboard about that. And with that, this man, finally, found the words I have been searching for. If I take out the word he used,  "Egypt" and put in my own word, I have what I have been trying to say:

Breast Cancer Is Not A Cow. Stop Milking It.

Yes. Thank you. Shukran.

Friday, July 1, 2011

Yummy Way to Work Tumeric Into Entertaining

from the New York Times...

Lentil Pâté With Cumin and Turmeric

Lentils and curry flavors go together beautifully. This pâté tends to be dry if you overcook it, so remove it from the oven when it’s just set, before the top cracks.

1 cup brown lentils, picked over and rinsed
1 quart water
1 bay leaf
1 medium onion
4 garlic cloves, 2 crushed, 2 minced
Salt to taste
2 tablespoons peanut oil or canola oil
1/4 teaspoon cayenne (more to taste)
1/2 teaspoon ground turmeric
1 tablespoon cumin seeds, toasted and coarsely ground
1 teaspoon black or yellow mustard seeds
1 tablespoon tomato paste
2 eggs
2 tablespoons extra virgin olive oil
1/4 cup chopped cilantro
4 teaspoons lemon or lime juice

1. Place the lentils in a medium saucepan with the water and bay leaf. Cut the onion in half, and add one half to the pot along with the crushed garlic cloves. Bring to a boil, add salt to taste, reduce the heat, cover and simmer 35 to 45 minutes until the lentils are tender. Remove the onion half, and taste and adjust seasoning. Drain and set aside.

2. Preheat the oven to 350ºF. Butter or oil a 5-cup paté tureen or baking dish, or bread pan. Finely chop the other half of the onion. Heat the peanut or canola oil over medium heat in a medium skillet. Add the chopped onion and a pinch of salt. Cook, stirring often, until the onion is tender, about five minutes. Stir in the garlic and spices, and cook, stirring, until the mixture is fragrant and the spices are sizzling, about 30 seconds. Add the tomato paste, and continue to stir over medium heat until it has darkened, one to two minutes. Stir in the cilantro. Remove from the heat.

3. Place the lentils and eggs in a food processor fitted with the steel blade. Turn it on, add the olive oil and process until smooth. Add the onion mixture, and pulse to combine. Season to taste with salt and pepper. Scrape into the prepared baking dish and cover tightly.

4. Bake for 40 minutes until just set. Remove from the heat and allow to cool. For best results, refrigerate overnight. Serve at room temperature or cold.
Yield: Serves 8 to 10.

Advance preparation: This keeps for about five days in the refrigerator.

Nutritional information per serving (eight servings): 168 calories; 1 gram saturated fat; 2 grams polyunsaturated fat; 5 grams monounsaturated fat; 47 milligrams cholesterol; 16 grams carbohydrates; 6 grams dietary fiber; 26 milligrams sodium (does not include salt to taste); 8 grams protein

Nutritional information per serving (10 servings): 135 calories; 1 gram saturated fat; 1 gram polyunsaturated fat; 4 grams monounsaturated fat; 37 milligrams cholesterol; 13 grams carbohydrates; 5 grams dietary fiber; 21 milligrams sodium (does not include salt to taste); 7 grams protein

Thursday, June 30, 2011

Thank You, Medicare

Yesterday's news that the FDA hearing went south and Avastin was not going to be approved for use for advanced stage breast cancer struck fear in the hearts of all the women who are currently benefiting from the drug.

What did this mean? Where will they turn? Would insurance companies still cover it on a compassionate basis?

A major step forward happened today: Medicare announced it would continue covering it. You can read about it here.

Insurance companies: Follow their lead. DO NOT STOP COVERING AVASTIN FOR WOMEN WITH BREAST CANCER.

Tuesday, June 28, 2011

We Do What We Do FOR YOU- No one else

Shocking news hit the airwaves today as a very large, local breast cancer organization was taken down because of fraud. They raised millions of dollars and none of it went to women with breast cancer. They spent every dime on raising more money for themselves and paying themselves huge salaries. Basically, they hijacked breast cancer to make a quick, sleazy buck.

As someone who has had breast cancer twice, let me tell you this makes me more sick than any chemo I ever did. As someone who runs a non profit organization for women with breast cancer on Long Island, I am doubly disgusted. If you knew how hard it is to raise any money, much less the millions these folks raised, you would understand.

The No Surrender Breast Cancer Foundation has  vital, legitimate programs that literally save women's lives. We also get women through their breast cancer in one, strong, self-advocating, hopeful piece.

I am writing today to let you know that we do not have salaries. We do not have expensive office space. We do not drive fancy cars. Why? Because we are doing this for you. One hundred percent of your donation dollar goes directly to the foundation's programs and helping women. We run a very tight ship and as the economy tanks even further and the donations are becoming more scarce for more and more charities, it is not easy to keep things running. BUT WE DO. Because we are committed to this cause and we believe in what we do. We know how many women we have helped and how many young women's lives may be saved by our Before Forty program.

I just wanted you to know that you can feel secure in supporting us because in reality, you are directly supporting women with breast cancer. And that is why we exist. For You.

LI breast cancer charity sued on misuse of donations
June 28, 2011 by TED PHILLIPS / ted.phillips@newsday.com
A Long Island charity that collected millions of dollars of donations spent almost none of it on the breast cancer services and research for which it raised the money, the State Attorney General Eric Schneiderman alleged in a complaint filed Tuesday.

The St. James-based Coalition Against Breast Cancer spent most of its money on fundraising, according to the complaint, which was filed in New York State Supreme Court in Suffolk. Over the past five years the organization raised $9.1 million, but spent less than 4 percent, or $364,000, on charitable programs, the attorney general's office said.
Schneiderman charged the organization along with the for-profit fundraiser Campaign Center Inc. and key personnel with violations of state not-for-profit and charitable solicitation laws. The suit aims to shut the organization down.

"By using a charity as a personal cash machine, the Coalition Against Breast Cancer and Campaign Center shamelessly exploited New Yorkers' natural sympathies and generosity," Schneiderman said in a news release. "Instead of benefiting breast cancer victims and their families, millions of dollars were misused for personal benefit."

In 2009, the organization gave out $57,481 in grants, less the $73,500 salary of its director of development, Debra Koppleman, according to tax filings. That year the organization raised $1.5 million while spending $1.1 million on fundraising. The charity has been run out of the home of its treasurer, Andrew Smith, who was named in the suit along with Koppleman and Patricia Scott, a director at the organization.

The suit also names Garrett Morgan, the owner of Campaign Center, which Schneiderman said engaged in fraudulent fundraising tactics while keeping 85 cents of every dollar it raised. Morgan was an associate of nonprofit's founder and ran its fundraising operations, according to the attorney general's office.

Schneiderman alleges that Smith and Morgan launched the organization and its fundraising program together in 1995 and that it served them as a cash machine rather than help women with breast cancer.
A person answering the phone at the organization identified himself as Smith and hung up the phone when a reporter identified himself. Morgan declined to comment.

The organization has no connection with the Manhasset Women's Coalition Against Breast Cancer.

Monday, June 20, 2011

What "Average" Patient, FDA?

The Wall Street Journal
 
JUNE 20, 2011

There's No 'Average' Cancer Patient

What the late Stephen Jay Gould could teach the FDA.

On June 28, the Food and Drug Administration (FDA) will hold a hearing to decide the fate of Avastin, a drug taken by thousands of women fighting late-stage breast cancer. Many of these women have pleaded for continued access to the drug, which they consider a matter of life and death.
But this case is really about what will guide decisions on treatment options—the best judgment of doctors and their patients, or the policy preferences of the FDA.

Last year, the FDA began the process of revoking Avastin's approval for breast cancer. Some leading oncologists applauded the decision, arguing that, for the average patient, Avastin doesn't work very well and has significant side effects.

Patient advocates and thousands of women who credit their survival to Avastin argue that it's unfair for the FDA to remove one of the few available options for patients diagnosed with terminal cancer. They're right.

Avastin originally hit the market in 2004 to treat other cancers, and in 2008 the FDA conditionally approved it for breast cancer. Initial testing showed that, on average, Avastin didn't lengthen patients' overall survival time. But it did slow tumor growth, giving many patients a longer "progression-free" survival. What this means is that dying patients get a precious few extra months of quality time they can spend with family and friends, travel rather than being confined to a bed, or get their personal effects in order.

A small percentage of patients taking Avastin have been cured of their breast cancer. But the drug's permanent approval hinged on the results of two additional clinical studies focusing on the progression-free survival end-point experienced by the majority of Avastin users. As before, neither study found an increase in overall survival, but they did record modest gains in progression-free survival—about five and a half months longer than those on the alternative treatment. That wasn't enough for the FDA, so the agency moved to revoke Avastin's approval for breast cancer last July.
The weakness of the FDA's reasoning here is that averages ignore that individual patients respond differently to treatments. Particularly with life-threatening illnesses, where the downside of any treatment is relatively small, average or median survivability too often masks the fact that some patients respond very well.

When well-known scientist Stephen Jay Gould was diagnosed with a rare form of lung cancer in July 1982, he was told the diagnosis meant a median survival time of just eight months. His doctor gave up on him. But he lived another 20 years.

"Means and medians are the abstractions," he wrote in Discover magazine in 1985. "Therefore, I looked at the mesothelioma statistics quite differently—and not only because I am an optimist . . . but primarily because I know that variation itself is the reality."

Like Gould's doctor, the FDA and its technocratic supporters are giving up on breast cancer patients because of their slavish obsession with median response rates. Everyone can agree that, on average, Avastin does not extend most patients' life expectancy. But some patients have responded incredibly well, living years longer than expected. The medical community calls them "super responders." Statisticians might describe them as "outliers." But they're real people, alive because of Avastin.

In a recent letter to USA Today, Shannon Morgan of Charlotte, N.C., wrote: "I've been on Avastin nearly three years, am able to work full-time and lead an active life. I'm not alone. Every drug has side effects. The FDA seems to forget that the primary side effect of Stage 4 cancer is death."

Avastin is expensive: $56,000 to $96,000 per year. The expected value of treatment for any given patient—the abstract "median"—seems small, so a private health plan may understandably balk at paying such a tab. But cost-effectiveness calculation isn't the FDA's job, and in fact the law forbids the agency from considering anything but a product's safety and effectiveness while it's evaluated.
What is the logic of keeping terminally ill patients from potential treatments? Can't they at least go down fighting?

Mr. Conko is a senior fellow at the Competitive Enterprise Institute.
Copyright 2011 Dow Jones & Company, Inc. All Rights Reserved

Tuesday, June 14, 2011

Big Pink Says No

In loving memory of Ferne Dixon
I made a promise to someone and I told her I would do everything in my power to keep it. As a result, about a month ago, I took a trip over to the Pink Side.  I was notified that Big Pink was funding local non-profit's breast cancer programs. According to their funding guidelines, No Surrender was  a perfect fit.  I should have known. What was I thinking? I wasn't... and neither are they. They are busy concentrating on Pinking The Cure ™®©℠(patent pending).


I wrote to them because young women, particularly African American women, get diagnosed with Triple Negative Breast Cancer before the age of forty. If they wait until forty for their first screening, it can be too late, and often is. I explained what the Before Forty Initiative does and how it saves lives. I even quoted studies from their own site that African American women disproportionately  develop TNBC over Caucasian women. Here are excerpts from the request:

“...we need help with our most important program, the Before Forty Initiative. My first cancer was found at age 39 only because I had baseline screening starting at age 35. Because my cancer was TNBC, I was very lucky that it was found before it spread. However, many women who were part of No Surrender, were not so lucky. Their triple negative tumors were found too late. African American women were the majority of this group, and unfortunately, they are all gone now.

As you know, because Komen has published some of the studies, African American women disproportionately develop TNBC at a younger age. This is also true of Hispanic women and women of Ashkenazi Heritage. The current standard of screening is for women to get their first mammogram at age 40 or older. This can have deadly consequences to a young woman who has a TNBC tumor...they need to get formally screened before the age of forty...

The Before Forty Initiative is empowering, educational and ultimately, will save the lives of young, African American and other high risk women. ”

Their response?

Your project, “Before Forty Initiative” is not eligible for funding because Susan G. Komen for the Cure’s current screening guidelines are not in line with what your organization promotes.


And thus endeth the lesson.

They state on their own site that African American women get TNBC young. They say they are "fighting for us," and have raised billions of dollars for the "fight against breast cancer." But when a program as simple and pure as early screening and education about the most aggressive form of breast cancer that is attacking and killing young women asks for funding, it is denied because they believe women should not be screened until after the age of forty. Does that sound like they are fighting for you?

I ask you, my readers, fellow breast cancer warriors, friends, and supporters, the next time you sit down to write a check to the Pink, consider helping us save lives instead. We need your help and we need it now and so do the young women out there who don't even know what TNBC is and don't know that they should get checked out now, before it is too late to help them.

You see, we believe in what we promote and we promote what we believe. 100% of your donations go to helping women with breast cancer.

I made a promise to Ferne and to Lori and to Steph and to Lisa and to Vicki and to over twenty other young, beautiful women who lost their lives to TNBC because their cancer was found too late. I take my promises seriously and I will never, ever back down, I will never lose my focus and I will fight for us forever.



Monday, June 6, 2011

Radiation News from ASCO 2011

Added Regional Nodal Irradiation Cuts Breast Cancer Recurrence

Elsevier Global Medical News. 2011 Jun 4, P Wendling

CHICAGO (EGMN) - Adding regional nodal irradiation to whole-breast irradiation significantly improved disease-free survival, but not overall survival in a randomized multi-center phase III trial of women with node-positive or high-risk node-negative disease treated with breast-conserving surgery and adjuvant therapy.

An interim analysis of 1,832 women with breast cancer found that after a median follow-up of 62 months, whole breast irradiation (WBI) plus regional nodal irradiation (RNI) significantly reduced the risk of locoregional recurrence from 5.5% to 3.2% (P = .02; hazard ratio 0.8) and distant recurrence from 13% to 7.6% (P = .002; HR 0.64), lead investigator Dr. Timothy Whelan reported at the annual meeting of the American Society of Clinical Oncology.

Overall survival in the intergroup trial was 9.3% with WBI vs. 7.7% with the combined radiation regimen, but the difference did not reach statistical significance (P = .07; HR 0.76).
In view of the positive findings, the data safety monitoring committee recommended that the results be released, Dr. Whelan told reporters at a press briefing during the meeting.

He suggested that the findings could expand the pool of women offered RNI. Currently, ASCO and the American Society for Therapeutic Radiology and Oncology (ASTRO) guidelines recommend locoregional radiation following mastectomy for tumors greater than 5 cm or with more than three positive axillary nodes.

Of the 1,832 women enrolled in the National Cancer Institute of Canada Clinical Trials Group MA.20 trial, 85% had one to three positive lymph nodes, and 10% had high-risk, node-negative breast cancer. All women were treated with breast-conserving surgery plus adjuvant chemotherapy or endocrine therapy.

"Results from MA.20 suggest that all women with node-positive disease be offered regional node irradiation provided they are made aware of the associated toxicities," said Dr. Whelan, head of radiation oncology at McMaster University and the Juravinski Cancer Centre, Hamilton, Ont.
The addition of RNI to WBI significantly increased the rates of grade 2 or higher dermatitis from 40% to 50% (P less than .001), pneumonitis from 0.2% to 1.3% (P = .01), and lymphedema from 4% to 7% (P = .004). The lymphedema was primarily grade 2, Dr. Whelen pointed out.

Reporters questioned why an earlier unpublished French study did not find a benefit with RNI, while MA.20 did. Dr. Whelan responded that regional radiation in the earlier study was limited to the internal mammary lymph nodes alone, whereas MA.20 expanded the upper radiation field to include the upper internal mammary nodes, supraclavicular nodes, and high axillary nodes. He could not explain why overall survival was not improved.

Radiation dosages for WBI were 50 Gy in 25 fractions plus a boost at the discretion of the cancer center of 10 Gy in 5 fractions. The RNI dosage was 45 Gy in 25 fractions.

WBI and RNI were delivered concurrently, so the added therapy would not require additional office visits for women, and would modestly lengthen the therapy.

The researchers will continue to monitor the patients and evaluate new techniques to reduce potential side effects, he said in an interview.

MA.20 was sponsored by the Canadian Cancer Society Research Institute, National Cancer Institute/Cancer Therapy Evaluation Program, and Canadian Breast Cancer Research Alliance. Dr. Whelan and his coauthors disclosed no conflicts of interest.

Thursday, May 26, 2011

Recent Interview for SheKnows.com


5 Amazing women -- all cancer survivors

Real Life
Cancer Stories

by Kori Ellis


We had the opportunity to interview five amazing women from various parts of the country and walks of life. No matter how different these women are, they have one major thing in common – they are all cancer survivors.

Gina MaisanoMeet Gina

Gina Maisano is a two-time breast cancer survivor, founder of the "No Surrender Breast Cancer" foundation and author of Intimacy after Breast Cancer.
I was a chef/caterer in Locust Valley, New York. I had a wonderful gourmet shop and catered off premise parties from 10 people at a private home to 1,000 people on a polo field.

The diagnosis

I was very lucky to have a doctor who believed in early detection. He had me get my first baseline mammogram at age 35. At age 39, a small shadow was found and that was my first cancer. It was invasive, ductal, triple negative breast cancer. That means it was not responsive to estrogen and it is a more aggressive type of breast cancer.

The treatment

I had a lumpectomy, six months of CMF chemotherapy followed by radiation. Six years later, I found another cancer while doing a breast self-exam and that was in the opposite breast. This time it was lobular, and responsive to estrogen. Because of the location of this cancer, under the nipple, lumpectomy was not possible. I chose a bilateral mastectomy followed by tissue expander reconstruction that later on were exchanged for silicone implants. I underwent nine months of chemotherapy, Adriamycin, Abraxane and Xeloda, followed by monthly Lupron injections to put me into menopause so I could take Femara, an anti-estrogen drug that helps prevent breast cancer recurrence. I then had radiation to the chest, underarm and collarbone area because this cancer spread to four of my lymph nodes.
Because of all the radiation I had, my skin did not do very well with the silicone implants, so I had a latissimus dorsi flap reconstruction. That takes the latissimus dorsi muscle from the back and puts it where the breasts were. An implant is also used. Because there is a new blood supply, the skin no longer had problems because of the radiation damage.

Lost friends

quotation mark openEven though it may seem like I have been through a lot, the most difficult part of the ordeal has been the friends I have lost.quotation mark close
Even though it may seem like I have been through a lot, the most difficult part of the ordeal has been the friends I have lost. I started my foundation, the No Surrender Breast Cancer Foundation, to help women through their breast cancer. We have an online support forum where women can talk to each other to share their experiences and find a safe place to say whatever they want. Because it is by survivor for survivor, women can express the things that they cannot say to their families, and members of the forum truly understand because they have been through it themselves. I have become very close to these women and we have lost some beloved members over the years and it is very hard. Especially when their lives could have been saved if their cancer had been found earlier. That is why our biggest program is the Before Forty Initiative. We strongly encourage all women to get their baseline mammogram at age 35 and not at the age of 40, because so many cancers can be found at their earliest, most curable stage if they don't wait.

Advice for others

If a woman has just been diagnosed, I hope she will come to our website, nosurrenderbreastcancerhelp.org. There she will find, in English, not doctor-speak, everything that she needs to know to help her fight her cancer. Then she can jump over to the support forum and talk to her fellow sisters. What she will discover is that this journey has a beginning, a middle and an end. The beginning is terror-filled because you don't know what is happening to you and how you will ever make it through. The middle is enduring the treatments and surgeries. And the end, is when you are done with all of the doctors and treatments and the rest of your life begins. That can be so very daunting and overwhelming, which is why I wrote Intimacy after Breast Cancer -- not only does it help you regain your intimate life, but it helps your reclaim your entire life post-cancer. It helps a woman heal both psychologically and physically.
You really will get through this and you will get your life back -- maybe even a better life.

interview by Kori Ellis for Sheknows.com