Thursday, April 28, 2011

If You Only Knew...

When you or someone you love finds a lump in her breast this is what happens: Your hand stops over the lump and a sharp, deep, fear strikes in your gut. You run your  hand over it again, hoping it wasn't there and you were somehow wrong. But it is still there. Your mind and heart begin to race. You cannot control your thoughts. You imagine the worst and you think about dying.

After a few moments  pass, the thoughts of death are joined by the prospect of horrifying surgeries, chemotherapy, losing your hair, losing your way of life. Your future seems wiped out completely. Every plan you made suddenly disappears.

An hour passes. Maybe you have called a friend or told a family member. Hopefully, you have called a doctor and made an appointment. This is filled with its own terror, because it would mean that what you fear may be confirmed and you will be strapped into a roller coaster ride from hell. You don't know how long the ride will be, if you will survive it, if it will ever end and who you will be when you get off it.

In all this time, to all the people you have reached out to, to the doctor's scheduling nurse, you never once said, " I found a lump on my ta ta." or "My boobie has a lump." No. You said, "I have a lump on my breast." Your hand rests upon it as you say those words. The memories of your adolescence when they first developed rush in. Your child nursing from it makes you weep. A part of you has something inside it that will change your life forever. It isn't pink. It isn't a cute slang word. It isn't sexy. It is terrifying, devastating and incredibly sad.

For those of us who have experienced this, you won't see us prancing around proclaiming we had boobie cancer or our ta ta's are about to be removed. No. We know better. And no matter how much pink gross grain thrown at us, nothing can ever bring us back to the day before we found that lump in our breast. Nothing.

Wednesday, April 27, 2011

New Drug Combo for Metastatic Disease

An early-phase study showed that the new taxoid, cabazitaxel (XRP6258), is not only safe but has significant activity when combined with capecitabine in patients with metastatic breast cancer previously treated with paclitaxel-like agents. This is a new drug combo with great promise that women who have Stage 4 disease can use in their arsenal against their cancer.

Eur J Cancer. 2011 May 1;47(7):1037-1045, C Villanueva, A Awada, M Campone, JP Machiels, T Besse, E Magherini, F Dubin, D Semiond, X Pivot



Background: Most patients with metastatic breast cancer (MBC) progress after chemotherapy. Cabazitaxel (XRP6258) is a new taxoid that is active in chemotherapy-resistant tumour cell lines. The objectives of this phase I/II study were to assess the maximum tolerated dose (MTD), safety profile, pharmacokinetics, and activity of cabazitaxel plus capecitabine in patients with MBC who had been previously treated with taxanes and anthracyclines.

Patients and Methods: In part I, we used a 3 + 3 dose–escalation scheme to assess the MTD of intravenous cabazitaxel (day 1) with oral capecitabine twice daily (days 1–14) every 3 weeks. In part II, we evaluated the objective response rate (ORR) at the MTD.

Results: Thirty-three patients were enrolled and treated (15 in part I; 18 in part II). Cabazitaxel 20 mg/m2 plus capecitabine 1000 mg/m2 was the MTD. Pharmacokinetic analysis showed no apparent drug–drug interaction. In all patients, the main grade 3–4 toxicities were asthenia (n = 5), hand–foot syndrome (n = 5), neutropenia (n = 21), neutropenic infection (n = 1), and neutropenic colitis (n = 1). One patient had febrile neutropenia. Antitumour activity was observed at all dose-levels with two complete responses, five partial responses (PRs), and 20 disease stabilisations (seven unconfirmed PR). At the MTD, 21 patients were evaluable for efficacy. The ORR was 23.8% (95% CI: 8.2–47.2%). The median response duration was 3.1 months (95% CI: 2.1–8.4 months), with four of five lasting for more than 3 months. Median time to progression was 4.9 months.

Conclusions: Cabazitaxel combined with capecitabine is active, has a safety profile consistent with a taxane plus capecitabine combination and warrants further investigation in patients with MBC.

Monday, April 25, 2011

Grow Your Own

Gardening Tips from our sister blog, The Best is Yet to Come, can be found here.
Book mark us!

Monday, April 18, 2011

It's Gone

This is a follow-up to the post from last month regarding the mansion that inspired F. Scott Fitzgerald's  description of Daisy Buchanan's home.

The man who purchased the property let it fall into a state of disrepair so bad that it had to be razed. He said the days of cocktail parties overlooking the Sound are over and it is time to make way for five new houses.  He destroyed a Stanford White masterpiece to make way for  plastic McMansions fabricated with the very best Home Depot has on sale....

Medicaid- is YOUR state like Indiana?

I have a friend and fellow breast cancer sister who lives in Indiana. Because of cancer, she lost her job and her health insurance. She was forced to get her treatment through Indiana Medicaid. She was diagnosed with a type of breast cancer known as Triple Negative breast cancer.

This means that it is
1. not responsive to estrogen
2. not responsive to progesterone 
3. not fueled by the Her2  oncogene.

If you have cancer that responds to estrogen or progesterone, you can take drugs following the end of your course of chemotherapy and radiation that "turn off" or block these hormones from feeding any future cancer. Women take these drugs for five years or more. Women who are Her2 positive have the benefit of Herceptin and a few newer drugs to keep this protein from encouraging more cancer growth.
All of these women, who are considered "positive" are also considered "in treatment" by virtue of the fact they are taking the drugs mentioned.

When a woman has triple negative breast cancer, there are no drugs to take. Since her cancer is not fueled by hormones and she does not carry the Her2 oncogene, she does not require anything further after her chemotherapy and radiation are completed. However, triple negative breast cancer is very aggressive and it has a high rate of recurrence. Because of this, doctors watch their triple negative patients very closely for the first few years post treatment to ensure that if anything should recur, they will catch it at its earliest stage.

Except if you live in Indiana and you are on Medicaid.

Indiana Medicaid tells its triple negative breast cancer patients that since they are not taking a drug for their cancer, they are no longer in treatment. That means that no follow up mammogram, breast mri, sonogram, PET scan, bone scan or any other screening tool required to follow these women will be covered. If you are on Medicaid, you cannot afford insurance. That would mean that you don't have the means to pay upwards of $1,500 for a PET scan out of pocket, either.

What is to become of these women? Are they being left out in the cold simply because their more aggressive cancer has no drug for them to take to help them fight recurrence? Women who are fortunate enough to benefit from post-treatment drugs, can have all the screenings they require, simply because they are considered "in treatment."

If you are on Medicaid and you are triple negative and about to complete treatment, you had better check to see if your state is like Indiana. If all the states in the union follow this logic, then it is time for us to rise up and demand that women who are under insured and rely on the Medicaid system, need to be followed by their doctor to help them stay alive. And Medicaid has to pay for the screening they require.

Thursday, April 7, 2011

We Want to Know

Will you take a moment to answer this survey?

1. Are you happy with the current layout of :
The Website
The Message Forum
The Blog

If not, which one needs work and how would you change it?

2. Is it easy to learn about your cancer on our main Website, meaning, can you find what you need quickly?

3. Are you aware of our main program, the Before Forty Initiative? Did it come to your attention quickly on the main Website, or did you have to hunt for it?
How would you change the way we promote our main program?

4. What service would you like us to offer that we do not?

5. Would you like us to list, anonymously, the questions that people email Edge, so you can see what is concerning our members? NOTE: NO Identifiable information will be revealed- it would appear as a plain question on the TOPIC only.

6. Did you know we have a Research Grant Program and have since our inception?

7. How often to you read the main website?

8. What can you do to help us spread the word about us?

9. How many people do you know who have been helped by us, whether they post on our support forum or not?

10. Should we offer a separate website for the Before Forty program?


Tuesday, April 5, 2011

Are You In? Your Life May Depend on It

AACR Seeks Public Support to Protest Funding Cuts

Elsevier Global Medical News. 2011 Apr 4, S Worcester

ORLANDO (EGMN) - The American Association for Cancer Research is rallying support for an outcry against proposed budget cuts by Congress that could cut funding to the National Institutes of Health by up to $1.6 billion.
The AACR is asking its membership of approximately 33,000 cancer physicians and researchers - as well as numerous other groups and the community in general - to voice their concerns on April 6 at 2 p.m. Eastern Time. 

Cuts to the National Cancer Institute amounting to about $300 million would drastically affect research grant funding and would stymie the current unprecedented level of progress and innovation in cancer research, Dr. Jon Retzlaff said at a press conference during the AACR's annual meeting. Dr. Retzlaff is managing director of the AACR's Office of Science Policy and Government Affairs in Washington, D.C.
The organization is asking that at the designated time, "every single patient, every cancer researcher call or e-mail members of Congress ... so they hear that it is crazy to go down this path," Dr. Retzlaff said. 

"We have to make our voice heard in ways we've never done before," he said, noting that the AACR has sent numerous alerts to members, and is working with various other groups to enlist their support in this effort.

The $1.6 billion in cuts to the NIH is part of the $61 billion in proposed cuts by the U.S. House of Representatives. The Senate has proposed $33 billion in budget cuts. As Congress grapples with the budget as well as the possibility that the government will be shut down in the coming days if a compromise is not reached, cancer researchers are left wondering if all their current research projects are in jeopardy.

"It's all about patients - about finding cures, and improving health," Dr. Retzlaff said, adding that there is an important economic development component that must also be considered: The investments in the NIH contribute greatly to economic development and innovation, which are priorities for the country - and which are imperative for its success in the future, he said.
The proposed cuts would likely mean reduced funding for major research programs and for cancer centers across the country, as well as the discontinuation of many grant programs that scientists rely on to pursue their research.

"We completely agree there have to be some tough choices, but ... let's not put our deficit on the backs of patients who are looking for hope and researchers who think they have wonderful opportunities to make a difference," he said.

To Find Your Congressperson's Email Address Go HERE

Monday, April 4, 2011

How Many CT Scans are Too Many?

Photo credit: Getty Images

"Doctor, do I need a CT scan, or can we do a different test?" 

The following article may help you remember to ask that question.




Japan nuke woes raise radiation awareness

The vastly expanded use of such medical tools as CT scans since the 1980s has led to a sharp spike in a typical American's radiation exposure, studies have shown.

Japan's nuclear plant crisis, while posing no threat here, "will hopefully make us more aware of the very different radiation-related issues that we face in this country," said David Brenner, director of the Center for Radiological Research at Columbia University Medical Center.

The average American is exposed to twice as much radiation annually -- 620 millirems -- as 30 years ago, though that amount remains far below the safety limit set for workers near radioactive material.

Most of that increase has come from an explosion in the use of computerized tomography -- CT scans. In 1980, Americans got about 3 million CT scans; now, more than 70 million a year are performed, according to Brenner.

Too much radiation, which can cause mutations in DNA, has been linked to cancer, including leukemia and thyroid cancer. Experts differ on the degree of health risks associated with medical radiation, but agree caution is warranted.

Brenner stressed "the CT scan is a wonderful tool that has saved countless lives." But he has also estimated 20 percent to 40 percent could be avoided if clinical guidelines are followed. Patient demand and doctors' worries about getting sued for not ordering tests are helping drive the increase.

"There is a very strong body of evidence that too many CT scans are being done in this country and many should not be done at all or should be replaced by something else," Brenner said.

A CT scan machine is essentially a computerized X-ray device that rotates, making three-dimensional cross-sectional images, or slices, of organs and body parts, and providing greater detail than conventional X-rays. Instead of a single beam, multiple X-rays are sent simultaneously from different angles, generally boosting the overall dosage.

The U.S. leads the world in CT scans per capita -- twice the average of other developed nations, according to the Organization for Economic Co-operation and Development. The American College of Radiology acknowledges their widespread use has led to more radiation exposure and has repeatedly said that unless the medical benefit outweighs the risk, such tests should not be performed.

Big dose from CT scans
About half of the average American's radiation comes from our natural environment, depending on where you live, according to the Nuclear Regulatory Commission. Residents of Long Island, near sea level, get less cosmic radiation than those in mile-high Denver, for instance.

The remaining average annual exposure is attributed to the increase in use of medical devices, especially CT scans.

A single heart CT scan delivers about 2,000 millirems. A chest scan averages 700 millirems, 70 times as much as a chest X-ray. A dental X-ray is only about 0.5 millirems.

International standards allow nuclear materials workers to be exposed to up to 5,000 millirems annually.

The NRC estimates that 50 percent of a population would die within 30 days after receiving a dose of between 350,000 to 500,000 millirems to the whole body over a period of a few minutes to a few hours.

Doses of less than 10,000 millirems spread out over years don't cause an immediate problem to body organs. The effects of this level of radiation, if any, occur at the cell level and would not be observed for 5 to 20 years after exposure, the NRC said.

A National Cancer Institute researcher, Amy Berrington de Gonzalez, and others calculated in a 2009 study in the Archives of Internal Medicine that CT scans performed in the U.S. in 2007 could lead to 29,000 future cases of cancer and 14,500 deaths.

The risk to any individual is likely small, the researchers said. But with CT scans so heavily used, even small risks "could translate in a considerable number of future cancers," especially in children.
The American College of Radiology has questioned the findings, but said it was still safer "to act as if low doses of radiation may cause harm."

Researchers also found a wide variation of radiation doses between CT scans. In the same Archives issue, Berrington de Gonzalez and others looked at scans at four San Francisco facilities and discovered routine chest CT scans emitted anywhere from 200 to 2,400 millirems.

The researchers blamed the lack of a national standard. Except for mammography facilities, the federal government has not regulated the use of X-ray devices.

Change coming in 2012
That will change next year when any nonhospital facility that offers CT scans and receives Medicare must be accredited by the American College of Radiology. That process includes ensuring doctors and technicians have the needed training and equipment works properly. ACR has called for hospitals that bill Medicare for medical imaging and radiation oncology to be accredited too.

In New York, the state health department requires facilities to ensure radiological imaging machines are properly used and deliver the right doses. It recommends, but doesn't require, accreditation.
ACR has accredited 404 CT facilities in New York. Neither ACR nor the health department knew the number of unaccredited facilities.

The U.S. Food and Drug Administration last year launched an effort to work with manufacturers and doctors on safeguards to ensure CT scans don't deliver more radiation than necessary.

Radiology groups like ACR have developed awareness campaigns to alert other medical professionals who order tests of the need to reduce unnecessary radiation exposure, especially duplicative scans.
Doctors must learn to ask, "Do I need this CT scan or can I do something else?" said Bill Robeson, radiation safety officer for the North Shore-LIJ Health System.

In the meantime, few patients -- or their doctors -- keep track of cumulative lifetime exposure to medical radiation, experts said. Keeping a record is a good idea.Dr. John Pippin, a Dallas cardiologist and senior medical and research adviser for Physicians Committee for Responsible Medicine, offers this advice: "The best question to ask [your doctor] is, 'What's the risk of having this done and the actual risk I would have the disease you're looking for?' "

Saturday, April 2, 2011

Breaking the Code

The next time someone asks, "Where is the cure?" consider the following: Breast cancer is not one disease. Further, as new research clearly illuminates, its mutations are multitudinous.

Genomic research into the DNA of breast cancer cells will lead us to better treatments, however, it will be a long time before a cure can be found. But they are certainly getting closer, however long the road ahead may be - God's Speed, dear researchers!



DNA of 50 breast cancer patients decoded

Published: Saturday, April 2, 2011 - 09:33 in Health & Medicine

Matthew J. Ellis, MD, PhD

In the single largest cancer genomics investigation reported to date, scientists have sequenced the whole genomes of tumors from 50 breast cancer patients and compared them to the matched DNA of the same patients' healthy cells. This comparison allowed researchers to find mutations that only occurred in the cancer cells. They uncovered incredible complexity in the cancer genomes, but also got a glimpse of new routes toward personalized medicine. The work was presented at the American Association for Cancer Research 102nd Annual Meeting 2011.

In all, the tumors had more than 1,700 mutations, most of which were unique to the individual, says Matthew J. Ellis, MD, PhD, professor of medicine at Washington University School of Medicine in St. Louis and a lead investigator on the project.

"Cancer genomes are extraordinarily complicated," Ellis says. "This explains our difficulty in predicting outcomes and finding new treatments."

To undertake the massive task, Washington University oncologists and pathologists at the Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine collaborated with the university's Genome Institute to sequence more than 10 trillion chemical bases of DNA — repeating the sequencing of each patient's tumor and healthy DNA about 30 times to ensure accurate data.

"The computing facilities required to analyze this amount of data are similar in scale to those of the Large Hadron Collider, used to understand the workings of sub-atomic particles," Ellis says.
The DNA samples came from patients enrolled in a clinical trial that Ellis is leading for the American College of Surgeons Oncology Group. All patients in the trial had what is called estrogen-receptor-positive breast cancer. These cancer cells have receptors that bind to the hormone estrogen and help the tumors grow.

To slow tumor growth and make the tumors easier to remove, patients received estrogen-lowering drugs before surgery. But, for unknown reasons, this treatment does not always work. Twenty-four of the 50 tumor samples came from patients whose tumors were resistant to this treatment, and 26 came from patients whose tumors responded. Comparing the two groups might help explain why some estrogen-receptor-positive breast cancer patients do well with estrogen-lowering drugs and others poorly.

Confirming previous work, Ellis and colleagues found that two mutations were relatively common in many of the patients' cancers. One called PIK3CA is present in about 40 percent of breast cancers that express receptors for estrogen. Another called TP53 is present in about 20 percent.

Adding to this short list of common mutations, Ellis and colleagues found a third, MAP3K1, that controls programmed cell death and is disabled in about 10 percent of estrogen-receptor-positive breast cancers. The mutated gene allows cells that should die to continue living. Only two other genes, ATR and MYST3, harbored mutations that recurred at a similar frequency as MAP3K1 and were statistically significant.

"To get through this experiment and find only three additional gene mutations at the 10 percent recurrence level was a bit of a shock," Ellis says.

In addition, they found 21 genes that were also significantly mutated, but at much lower rates — never appearing in more than two or three patients. Despite the relative rarity of these mutations, Ellis stresses their importance.

"Breast cancer is so common that mutations that recur at a 5 percent frequency level still involve many thousands of women," he says.

Ellis points out that some mutations that are rare in breast cancer may be common in other cancers and already have drugs designed to treat them.

"You may find the rare breast cancer patient whose tumor has a mutation that's more commonly found in leukemia, for example. So you might give that breast cancer patient a leukemia drug," Ellis says.
But such treatment is only possible when the cancer's genetics are known in advance. Ideally, Ellis says, the goal is to design treatments by sequencing the tumor genome when the cancer is first diagnosed.

"We get good therapeutic ideas from the genomic information," he says. "The near-term goal is to use information on whole genome sequencing to guide a personalized approach to the patient's treatment."
This work builds on previous collaborations between Washington University oncologists and the Genome Institute. In a study published last year in Nature, they reported the complete tumor and normal DNA sequences of a woman with "triple-negative" breast cancer, a particularly aggressive type that is difficult to treat and more common in younger women and African-Americans.

While many mutations are rare or even unique to one patient, Ellis says quite a few can be classified on the basis of common biological effects and therefore could be considered together for a particular therapeutic approach.

Ellis looks to future work to help make sense of breast cancer's complexity. But these highly detailed genome maps are an important first step.

"At least we're reaching the limits of the complexity of the problem," he says. "It's not like looking into a telescope and wondering how far the universe goes. Ultimately, the universe of breast cancer is restricted by the size of the human genome."