Tuesday, September 30, 2014

Agent Orange Bill Legislation Set To Run Out October 1, 2014

Everyone knows Agent Orange is bad, and exposed veterans know that it causes certain cancers and other diseases after exposure. The Department of Veterans Affairs (VA) recognizes this, and for all of these cancers and diseases, disability compensation is practically automatic. These are called “presumptive” conditions that are presumed to be caused by the military purely because of time and date in service.

Veterans’ children have long been recognized to have birth defects and diseases resulting from their parents’ exposure to Agent Orange.  Currently, the VA recognizes many such conditions in the children of women veterans, but the list for male veterans’ children is significantly shorter. It includes only spina bifida (with the exception of spina bifida occulta).

What a lot of veterans don’t know, though, is that Agent Orange exposure has also caused numerous, serious birth defects in exposed male veterans’ children, besides spina bifida. These can include:

- Crohn’s disease
- Lupus
- thyroid disease
- chronic kidney disease
- missing parts of limbs
- webbed toes

The list is much, much larger than this. For a complete list of diseases and birth defects known to have occurred in children of vets exposed to Agent Orange, please visit the Children of Vietnam Veterans Health Alliance (COVVHA).

The Agent Orange Act of 1991 went into effect for the purpose of researching the diseases and birth defects found in exposed veterans’ children, to find out what they were, and to add them to the list of VA covered conditions.

The Act began a review of conditions in 1994 which was originally scheduled to run until 2001, but later was extended till October 1, 2014. Every few years, more conditions were added to the VA’s list. On October 1, 2014, the last review will take place, so any conditions not included in this last report will probably be left out of the VA’s list for good, unless more legislation comes into play.

It is likely we will see this last report, which covers the data from 2012, 2013, and 2014 sometime in 2015.

If you are a child of an exposed veteran, COVVHA encourages you to file a claim with the VA so that your voices can start being heard.

The instructions for doing so are found at the COVVHA website and are reproduced below:


Beauty products linked to cancer, birth defects, hormonal issues

Valerie Mason-Robinson didn’t originally plan to open Eden Organix, her natural and organic beauty products store and spa in Highland Park. The chemical engineering graduate started her career in the mainstream cosmetic industry, working in the sales departments of some of the world’s largest cosmetic companies.

Her path changed when her first child’s skin issues prompted her to learn more about some of the ingredients found in beauty and personal-care products.

“A lot of (mainstream) products contain skin irritants as well as chemicals linked to breast cancer, testicular cancer, asthma, eczema, early puberty and aging skin,” says Mason-Robinson, an aesthetician who now encourages people to use beauty and personal-care products with natural ingredients instead of synthetic ones. “To me, using those products is killing yourself softly, truthfully.”

Mason-Robinson isn’t alone in her concern about the ingredients used in many mainstream beauty and personal-care products. Several nonprofit organizations, including the Environmental Working Group and the Campaign for Safe Cosmetics, are working to eliminate chemicals they believe are linked to cancer, birth defects, hormonal issues and other health problems from cosmetics and personal care products.

“Everything from deodorant to baby shampoos contains things that you shouldn’t put on your body,” says Stacy Malkan, co-founder of the Campaign for Safe Cosmetics, which recently was involved in convincing the New Brunswick-based company Johnson & Johnson to eliminate potentially carcinogenic chemicals from some of its baby shampoos. “The skin is very effective at absorbing chemicals, and in some cases, it can be an even more direct route of exposure because it doesn’t go into your digestive system.” According to the Campaign for Safe Cosmetics, the top ingredients and contaminants to avoid in personal-care and cosmetic products include triclosan, formaldehyde, formaldehyde-releasing preservatives such as quaternium-15 and dimethyl-dimethyl, parabens like methylparaben and propylparaben, synthetic musks and hydroquinone.

The Environmental Working Group tests tens of thousands of personal-care and beauty products on a regular basis and gives each product a safety rating on its Skin Deep database online. Goodguide.com offers a similar ratings service for all types of products. Malkan also encourages people to support the Safe Cosmetic Act, federal legislation introduced in July. If passed, this would remove chemicals linked to reproductive harm and cancer from personal-care and beauty products and set up a system for safety assessments of those products under the FDA. Corley believes as more information becomes readily available for consumers more companies will begin to remove chemicals linked to health risks from their products.

“People are buying more and more natural products,” he says. “A lot of people thought it was just a trend, but it has become a lifestyle for people. You are starting to see the green movement really move.” tests tens of thousands of personal-care and beauty products on a regular basis and gives each product a safety rating on its Skin Deep database online. Goodguide.com offers a similar ratings service for all types of products.

Malkan also encourages people to support the Safe Cosmetic Act, federal legislation introduced in July. If passed, this would remove chemicals linked to reproductive harm and cancer from personal-care and beauty products and set up a system for safety assessments of those products under the FDA.

Corley believes as more information becomes readily available for consumers more companies will begin to remove chemicals linked to health risks from their products.


Spread of multiple myeloma halted in mice

Novel approach now being tested in a clinical trial

In an advance against cancer metastasis, scientists at the Harvard-affiliated Dana-Farber Cancer Institute have shown that a specially developed compound can impede multiple myeloma in mice from spreading to the bones.

The findings, published in the Sept. 25 online edition of Cell Reports, suggest the compound may also be able to protect human patients from one of the deadliest effects of cancer.

The research involves a new approach to metastasis, the process by which cancer tumors spread to and colonize distant parts of the body. While traditionally research has focused on the cancer cells themselves, scientists are increasingly studying the interactions between tumor cells and the tissues around them — the so-called microenvironment. In the current study, researchers explored why errant myeloma cells often settle in bones, and whether the bones could be made less hospitable to such malignant homesteading.

“While cure and survival rates have increased for many types of cancers in recent decades, most of these gains have been made in patients with primary cancers — cancers that have not spread beyond their initial site,” said the study’s senior author, Irene Ghobrial of Dana-Farber’s Center for Hematologic Oncology. “Metastasis remains one of the most formidable complications we face as cancer researchers and physicians. Improvements in the treatment of metastatic cancers have, for the most part, not been nearly as dramatic as in primary disease.”

The current study focused on multiple myeloma because it is metastatic by nature. Myeloma cells originate in the bone marrow, depart for the bloodstream, and eventually return to the bones, where they form numerous colonies — hence the name.

Ghobrial and her team knew that a substance called stromal cell-derived factor-1 (SDF-1) is a kind of protein Pied Piper, attracting certain cells to new locations within the bone marrow. They found that mice with advanced stages of myeloma had sharply higher levels of SDF-1 at the sites in the bones where metastasis had occurred.

“We reasoned that by neutralizing SDF-1, we could change the bone marrow environment to make it less receptive for multiple myeloma cells, reduce myeloma cells’ affinity for the marrow, and thereby inhibit the progression of the disease,” said Aldo Roccaro, the study’s co-first author with Dana-Farber colleague Antonio Sacco.

Working with the German biotechnology company NOXXON Pharma, the researchers tested a substance called olaptesed pegol (a PEGylated mirror-image L-oligonucleotide), which binds tightly and specifically to SDF-1. Laboratory experiments suggested that olaptesed pegol blocked the activity of SDF-1, making it a less alluring signal for tumor cells. In mice, the researchers found that olaptesed pegol altered the bone marrow, rendering it uninviting to myeloma cells. The result was slower disease progression and prolonged survival of the animals.

It isn’t completely clear what becomes of the blood-borne myeloma cells that are prevented from metastasizing to the bones, the researchers said. “We know that myeloma cells can’t survive for long if they’re circulating in the blood and can’t adhere to other tissue,” Ghobrial noted. “We saw no evidence that they had metastasized and begun to grow in other tissue, either.

“Our findings clearly document a therapeutic effect of olaptesed pegol in a mouse model of advanced myeloma,” she continued. “It is now being tested in a clinical trial of multiple myeloma patients, with more trials to come.”

Ghobrial is an associate professor of medicine at Harvard Medical School (HMS) and Roccaro is a research associate in medicine at HMS.

The research was supported by the National Cancer Institute.


Monday, September 29, 2014

September at the Beach

September is a lovely time to visit PCB.  The kids are back in school, the beach is uncrowded, and this year the water was spectacular.

Patricia drove down for 4 nights.  (My favorite roomate!).  Much to my delight, a lifelong hometown neighbor and family friend, Rondi came down from Colorado for a couple of nights with her husband Roy.

We had a grand time.  I had a pizza delivered one night.  Then we hung out at the beach the entire next day.  It was wonderful to be with an old Ohio pal!

I was there for a couple of weeks.  Patricia and I hit our favorites....Dee's Hangout and Los Rancheros.  For the most part, I just hung out at the beach all day, then fended for myself foodwise.  I don't like to eat out alone.

Much to my delight, pals Keith and Lauren came over to spend a night.  We did some Stouffer's lasagna in the condo, Keith sprung for happy hour across the street, then we played on the beach the next morning.  (We're getting really good at ladder-golf)

This was amusing..... the gulf was loaded with stingrays.  I had done some research on them and learned that they're harmless but curious creatures.  (Unless you step on one, as Rondi's brother did a few years ago here).

From the 22nd floor, we'd watch these critters swimming towards people.  Wait for it....wait for it.....  "AHHHHHHHHHH".  They'd run screaming out of the water.  Funny.

So.... it was a wonderful 2 weeks.  Dom and I are headed back in October.  Cannot wait!

Tuesday, September 23, 2014

Dom's August Numbers.... 61 Months Complete Remission!

Thanks for all of the prayers and good vibes!

WBC:      6.5

HTC:        36.1


ANC:     56


Kappa:  19.21

Lamda:   18.72

Ratio:   1.03

ZERO M-SPIKE!!!!!!!!!!!!!!!!!

Thursday, September 4, 2014

Newer Drug Helps Myeloma Patients Who Can't Have Transplant

WEDNESDAY, Sept. 3, 2014 (HealthDay News) -- A cancer drug that targets the immune system may help improve the outlook for older adults with multiple myeloma, though a stem cell transplant remains the standard of care for relatively younger patients.

Those are some of the findings from two studies in the Sept. 4 issue of the New England Journal of Medicine.

Multiple myeloma is a cancer that begins in certain white blood cells. In the United States, it accounts for about 1 percent of cancers, and for those who develop it, it's often deadly. About 45 percent of Americans with the disease are still alive five years after diagnosis, according to the U.S. National Cancer Institute.

For years, the standard treatment -- at least for patients younger than 65 -- has involved removing blood-forming stem cells from the patient's bone marrow or bloodstream, then using high-dose chemo to kill off the myeloma cells. Afterward, the stored stem cells are infused back into the patient, where they aid in recovery.

That extends people's cancer remission, but it's not a cure, said Dr. David Avigan, who treats myeloma patients at Beth Israel Deaconess Medical Center in Boston.

In the past five to 10 years, Avigan said, "novel drugs" have arrived on the market, and in studies they've sent some patients into complete remission.

"That's raised the question, are transplants still needed?" said Avigan, who wrote an editorial published with the studies. "Or can you get everything you want with these newer drugs? That's an important question, and one that patients often ask."

The answer, based on one of the new studies, is that transplants remain the best option for patients younger than 65. (Because transplants carry substantial risks, they aren't usually done in older or sicker patients.)


Chemotherapy and stem-cell transplant for multiple myeloma remain superior

1. Patients with multiple myeloma treated with high-dose chemotherapy and autologous stem-cell transplantation consolidation therapy had significantly longer disease-free survival, overall survival, and hematologic adverse events compared to those treated with a combination of melphalan, prednisone, and lenalidomide.

2. Patients treated with lenalidomide maintenance therapy had a significantly longer disease-free survival but not a significantly improved overall survival compared to patients treated with no maintenance therapy.

Evidence Rating Level: 1 (Excellent)

Study Rundown: The current standard of therapy for newly diagnosed multiple myeloma in patients under 65 years of age is high-dose chemotherapy plus autologous stem-cell transplantation. This regimen has been shown to prolong progression-free survival and overall survival in these patients. Given the recent success of immunomodulatory drugs in treating patients with multiple myeloma, there has been growing interest in comparing the standard treatment to the newer and less toxic, oral medications.

In this open-label, randomized study, patients under 65 years of age with newly diagnosed multiple myeloma were treated with one of two consolidation therapies: high-dose melphalan plus autologous stem-cell transplantation or a combination of melphalan-prednisone-lenalidomide (MPR). Patients in the high-dose chemotherapy and stem-cell transplant group had significantly longer progression-free survival and improved 4-year overall survival, but also had significantly higher numbers of adverse events including neutropenia, thrombocytopenia, and infections. The authors also compared maintenance therapy with lenalidomide versus no maintenance therapy and found that the former group had a significantly longer progression-free survival, though there was no significant difference in overall survival rates. There were also significantly higher levels of adverse events including neutropenia and infections in the lenalidomide maintenance therapy group.

The greatest strength of this study is the use of a well-powered randomized study design to address an important clinical question in the management of newly diagnosed multiple myeloma. Major drawbacks include the fact that only 68% of the originally enrolled subjects were eligible for randomization to the consolidation therapy groups, largely due to inadequate induction therapy responses. This means that the final study population is biased towards patients with treatment-responsive multiple myeloma. Secondly, the study does not address the efficacy of bortezomib, a proteasome inhibitor that has shown utility in the treatment of multiple myeloma.


“In the era of novel, effective agents, autologous stem cell transplantation confirmed its superiority over chemotherapy with novel agents in young patients (< 65 years of age) with multiple myeloma, prolonging both progression-free survival and overall survival. Therefore, transplantation should be used at diagnosis, and not delayed until relapse as is currently done in several centers.

In addition, maintenance therapy with lenalidomide further improved progression-free survival and marginally overall survival. Thus, the optimal strategy for young patients is a sequential approach that includes induction with novel agents, followed by transplantation and then maintenance therapy.”

Tuesday, September 2, 2014

Agent Orange and VA battles

Wife recounts years of struggles for late husband to finally receive benefits

Francesca Cesare sat behind a stack of her husband's medical records at her spotless town house and told how wounds from the Vietnam War ate away at the man she loved for nearly 50 years.

The Malta woman met Robert Cesare on his birthday in a Troy nightclub in 1965, the year he graduated from Colonie's Shaker High School and enlisted in the Army to fight in Vietnam. After 13 months in the war zone, he came home a changed man on St. Patrick's Day in 1967.

Over the following decades, he suffered from cysts and boils on his body and post traumatic-combat stress that nearly tore his family apart. He sought disability benefits for exposure to Agent Orange — a blend of chemicals used by U.S. armed forces in Vietnam to eliminate foliage that provided cover for the enemy — but the Department of Veterans Affairs repeatedly rejected his claims until days before he died, according to records.

"He was denied so many years until he was on his deathbed," Francesca Cesare said from her home in the Luther Forest development. "What good is that? At the end of his life, they finally admit it."

It's a time of recognition for some Vietnam veterans in the Capital Region, but not for all. On Friday, a group gathered in Saratoga Springs to kick off a series of events commemorating the 50th anniversary of the war in which 2.7 million Americans served from 1964 through 1973. In Albany, the Tri-County Council of Vietnam Era Veterans, who have worked to restore the Albany County Vietnam Veterans Memorial near the state Capitol, will rededicate the site at a Sept. 20 ceremony. But the legacy of Agent Orange still haunts many who served in the war, and their families.

The United States sprayed 20 million gallons of herbicides in Vietnam between 1962 and 1971. Many veterans experience health problems that they attribute Agent Orange, and the VA recognizes dozens of diseases linked to the chemical defoliant.

"That's been a struggle for us forever, and we're still battling," said 65-year-old Ned Foote of Queensbury who lost his leg in combat and is president of the New York State Council Vietnam Veterans of America.

Francesca Cesare, who is 67, said she wanted to recount her family's nearly half-century struggle because she feels other veterans aren't receiving compensation from the VA for wounds they suffered like her husband's. "I have to be his voice because it needs to be heard," said the widow, who in 1958 immigrated from southern Italy and settled in Watervliet.

Growing up in Latham, Bob Cesare liked music and "cars were his passion," his wife recalled. He was one of the first Shaker graduates to volunteer for Vietnam. Cesare was an infantryman with the 2nd Battalion, 79th Field Artillery near An Khe and then Pleiku. Francesca Cesare wrote to Bob every day.

"I wanted him to know he had something to come back to," she said. The soldier asked her to marry him in a letter from Vietnam. He mailed her a coffeepot with hundreds of dollars for his father to buy her an engagement ring.

In Vietnam, Cesare and others in his unit complained about neck and skin irritations that worsened when they shaved, Francesca said. "He knew he was sprayed with Agent Orange," she said. When Cesare returned, his family picked him up at the Albany airport where he kissed the asphalt, but Francesca Cesare said they were shocked at his physical condition. He was gaunt and there was a distant look in his eyes.

"His mother said, 'Oh, my God, that's not my son,'" Francesca Cesare recalled.

Veterans exposed to Agent Orange are eligible for disability compensation. Under a "presumptive policy" instituted by Congress in 1991, vets who served in Vietnam between Jan. 9, 1962, and May 7, 1975, need not prove a direct service connection to their illness, as they must with other wounds. The policy was designed to simplify the process of applying for compensation for diseases the VA links to Agent Orange exposure, including Parkinson's disease, respiratory cancer and the skin condition chloracne, which can afflict people who come into contact with chemicals.

Foote said care at the Albany VA has vastly improved in the past 10 years, but the disability claims approval process is separate from care provided at VA hospitals and veterans suffering from ailments need to ask county or state service officers for assistance in submitting claims.

Bob and Francesca Cesare married Oct. 14, 1967. He took a job as a truck driver. The couple had two daughters, Michele Campbell and Angela Cesare. His skin problems intensified in 1970. Doctors at the Albany Stratton VA Medical Center diagnosed him with chloracne.

Cesare came down with foot fungus and his teeth started to break, his wife said. VA staff removed the boils, tested his blood and took body scans. His skin breakouts always returned, his wife said. The couple moved to New Jersey and then Texas. Cesare sank deep into post-combat depression. The couple separated for a time before reuniting and buying a house in Clifton Park in 1991.

Over the years, Cesare complained that his skin problems stemmed from Agent Orange exposure. But the VA turned him down for Agent Orange benefits at least five times, his wife said. She keeps written records going back more than 30 years. "He was always denied for chloracne and post-traumatic stress disorder, yet he was being treated for them at the VA," Francesca Cesare said. She said the VA lost her husband's medical records and occasionally neglected to respond to claims he filed.

Fed up, in October 2012 she wrote a letter about her husband's plight and sent it to the White House. About six months later, the VA granted Cesare 40 percent disability for PTSD and tinnitus, or ringing in the ears. He received nothing for exposure to Agent Orange. A year later, Cesare discovered a mass on his back. This past February, doctors at the Albany VA found terminal cancer in his lungs, kidney and pancreas. That shocked his wife because previous blood tests at the VA did not indicate any problems, she said.

On Feb. 12, an Albany VA doctor acknowledged Cesare was exposed to Agent Orange and deserved to be compensated. On Feb. 27, the VA rated Cesare 100 percent disabled and ruled he was eligible for $3,332 a month in support. Cesare died four days later at the Albany VA. He was 66.

His death certificate states he died from respiratory failure due to cancer in both lungs, "which was also due to a consequence of Agent Orange and cigarette smoking." Cesare smoked cigarettes for about 20 years until 1991, his wife said.

As the widow of a veteran exposed to Agent Orange, Francesca Cesare receives $1,235 a month from the government. She works part time to stay busy and to keep her mind off her husband's plight. She hopes others will learn from her story, and the VA will do better.