OKBTF Brain Tumor Buzz

Long Distance Caregiving

2009-09-24T10:51:00.000-05:00

Caregiving is often times a long distance task. What do you do when you have a parent or close family member who lives miles away that become ill and need your assistance. How does one manage the daily demands, small and large of another persons health care crisis?

No matter the distance, you can be a good caregiver and manage the stress that accompanies it. Here are some tips I adapted from a NIA booklet called So Far Away: Twenty Questions for Long Distance Caregivers:

1. Seek out help from people in the community: the next door neighbor, an old friend, the doctor. Call them and tell them what is going on and make sure they know how to reach you.

2. If there is already an on-site caregiver, identify options to help them if a crisis occurs. Making prior arrangements can make things easier when a crisis does occur.

3. Get a directory of resources and services from a local library or social service provider, and check for updates on these resources. This helps everyone know what is available and you can begin plugging into networks.

4. Pull together a list of the persons prescriptions and over-the-counter medicines, including doses and schedules. This is essential in emergencies and keep the list updated regularly.

5. Discuss and advance directive that states your loved-ones wishes regarding health-care treatment preferences. If he or she does not have one, talk about getting one set-up. Make sure you keep a copy and you know where the original is kept. You should also provide a copy to the physician.

These are a few tips that should help you manage the storm or long distance caregiving. Be gentle and forgiving with yourself and always remember the ultimate goal is to be helpful to the person you love.

If you have tips you would like to share please feel free to leave those in the comments or email me directly.

New York Times Article - Doctor Bridging the Cultural Gap

2009-07-17T10:37:00.004-05:00

I enjoyed reading this article published in the New York Times regarding how culture can affect health disparities, communication and interactions in the doctor-patient relationship, the illness experience and health care outcomes. This is a must read for health care professionals and advocates alike.

http://www.nytimes.com/2009/07/16/health/16chen.html?hpw

Brain Tumor Awareness Month

2009-04-22T14:12:00.003-05:00

Well ladies and gents it is almost May. I simply can't believe how fast time is flying by this year. It is by far the busy time of the year for me. Brain Tumor Awareness month is almost upon us. In May the Oklahoma Brain Tumor Foundation is hosting a variety of activities to raise awareness and raise funds. In addition, you can also join advocates in Washington D.C. for Brain Tumor Action Week.

Beginning this week, FOX 25 News Oklahoma City affiliate will do a series on brain tumors and highlight 4 brain tumor families in Oklahoma. Each story brings attention to different challenges the disease brings to families. Visit http://www.okcfox.com/newsroom/morning_news/videos/vid_143.shtml to view the promo that aired this morning.

On Friday, May 8th OKBTF is hosting the Oklahoma Heisman Celebration of Hope Awards Banquet at the Oklahoma History Center. This event, in addition to being a major fundraiser for the organization, also recognizes award winners of the Robert B. Lewis Corporate Leadership Award, the Jason White Spirit of Hope Award and the Founders Volunteer of the Year Award.

On Monday, May 11th is the Oklahoma Heisman Swing for Hope Charity Golf Classic at Toby Keith's beautiful Belmar Golf Club. The four-man scramble tournament is a first class tournament including all the amenities, food and drinks you can imagine. Not to mention the opportunity to meet and hang out with football legends Jason White, Steve Owens, and Billy Sims. Other celebrities are expected to attend as well. If you would like more information regarding either event, please contact the OKBTF at 405-843-4673.

The national advocacy agenda is explained in the advocacy packet that is available below by visiting www.nabraintumor.org . Brain tumor advocates are asking their Senators and Representatives to do four things: 1) support an increase in funding for the National Institutes of Health in FY 2010 of 10 percent; 2) write a letter to National Cancer Institute Director John Niederhuber asking him to restore funding for the Adult Brain Tumor Consortium; 3) support the Brain Tumor Care and Cures Act of 2009, including by serving as the lead House or Senate sponsor of the bill or by cosponsoring it upon its introduction in House and Senate; and 4) cosponsor the Ending the Medicare Disability Waiting Period Act of 2009 (S. 700/1708).

If you plan to make visits to your elected officials in Washington, D.C., please join the North American Brain Tumor Coalition on Sunday, May 3rd for an informal review of these positions. Visit www.nabraintumor.org

For More information regarding Brain Tumor Awareness Month visit www.okbtf.org Remember Together We Can Make A Difference!

Northeast U.S. has most brain cancer hospitalization

2009-03-11T14:41:00.000-05:00

People in the Northeastern U.S. are one-third more likely than those in the South or West to be hospitalized for treatment of brain cancer or to have brain cancer when they are hospitalized for another illness or complication, according to the latest News and Numbers from the U.S. Agency for Healthcare Research and Quality.

In 2006, about 30 of every 100,000 people in the Northeast were hospitalized with brain cancer. That compares to 23 per 100,000 for people in both the South and West. The rate was slightly higher for people in the Midwest – 25 per 100,000.

AHRQ’s analysis also shows that in 2006:
Nationally, the hospitalization rate for brain cancer remained stable since 1995 – roughly about 35,000 hospital stays a year.

An additional 38,000 hospital admissions were associated with brain cancer – mostly for chemotherapy or radiotherapy to continue treatment, or for convulsions, pneumonia or other complication from the disease. These hospitalizations increased 18 percent since 1995.
Among people over 65, men were 62 percent more likely to be hospitalized primarily for brain cancer and 55 percent more likely to be hospitalized with brain cancer as a secondary diagnosis than were women.

While 6.2 percent of hospital patients admitted for brain cancer died while hospitalized in 1995, the rate dropped to 4.4 percent in 2006.

This AHRQ News and Numbers is based on data in Hospitalizations for Brain Cancer, 2006. The report uses statistics from the 2006 Nationwide Inpatient Sample, a database of hospital inpatient stays that is nationally representative of inpatient stays in all short-term, non-Federal hospitals. The data are drawn from hospitals that comprise 90 percent of all discharges in the United States and include all patients, regardless of insurance type, as well as the uninsured.
For other information, or to speak with an AHRQ data expert, please contact Bob Isquith at Bob.Isquith@ahrq.hhs.gov or call (301) 427-1539.

Not Remarkable You Say?

2009-02-25T11:26:00.003-06:00

I remember one time while my son Cade who was battling a brain stem brain tumor he developed some swelling around his shunt. Previously the doctors had told me that if there was ever swelling around the shunt to inform them immediately. Well, we just happened to already be in the hospital at the time, which wasn't uncommon we basically lived there for 4 months. And, being the very proactive and on top of things caregiver mom that I was I promptly informed the nurses. But low and behold before we had time to deal with the swelling issue, Cade who was only 1 year old decided he didn't want the Central line in his chest anymore and proceeded to yank it out. So he was sent immediately into surgery. After surgery while in recovery the surgeon came in, now remember at this point my husband and I had been up for 24 hours straight and been in the hospital for about 2 weeks, so when I asked the surgeon about the swelling around Cade's shunt he proceeded to inform me that it was not "remarkable". Not remarkable you say? Let's just say that was not the correct word to use to a mother who was trying to remain sane while her 1 year old child endured 4 surgeries in a matter of 4 weeks, had just started chemo and was simply exhausted emotionally, physically and spiritually.

Now you and I both know what the surgeon meant and he did not intend to upset me with his medical assessment. But what was standard surgeon lingo was not the correct language to use when speaking with a very emotionally and physically drained mother. Sometimes we can get caught up in using correct terminology that is meant to inform the patient and caregiver of the extent of our medical knowledge and years of training but only ends up making them feel that you are uncaring, cold and disconnected to emotional and physical trauma they are experiencing.

There are a few simple steps you can take that will put your patients at ease and improve the doctor/patient lines of communication.

When speaking with your patient don't use acronyms. Typically they have no idea what those acronyms mean.
Always use layman's terms. It is generally a good rule of thumb when speaking to a patient or caregiver to use language appropriate for an 8 year old child. When writing literature for patients and caregivers it is typically the standard we use when picking language for publications. I always ask myself would this make sense to an 8 year old? If you happen to know the patient or caregivers have more knowledge in these issues then it is completely appropriate to speak on their level. But in general the 8 year old rule of thumb is a pretty good one to go by.
Sit down when speaking to your patients. I liken this to when you want to connect to a child you bend down and get on their level to speak to them eye-to-eye. When giving your patients information or news, get on their level and look them in the eye.
Touch makes a connection. When you sit down to talk to your patients and you have some difficult news or maybe you can tell they are stressed or irritated. If you want to make them feel better or improve the conversation...touch their hand, put your hand on their shoulder, etc. This physical contact puts people at ease and makes them feel that you care. Don't' ever discount the power of touch.
Never leave patient or caregiver before asking if they have any questions and if they understand what you have discussed. This 1 simple rule will have lasting affects on your relationship with your patients.

Ok Senate Puts Insurance Company Profits Ahead of Citizens Health Care

2009-01-07T13:02:00.002-06:00

Please CALL your senator http://www.capitolconnect.com/oklahoma/default.aspx

January 6, 2009

For Immediate Release
Contact: Amber England, Democratic Communications Director
Office: (405)-521-5695
Email: england@oksenate.gov
Senate Republicans Prove Allegiance to Powerful Insurance Industry
"Coffee Can't" Check Partisanship at the Door

OKLAHOMA CITY--In ten separate votes pertaining to the newly adopted Senate Rules, Senate Republicans sent a message loud and clear to the powerful insurance industry today: "Help is on the way"
"We are sorely disappointed the Senate Republicans chose to institutionalize their love for the insurance industry today by adopting rules that protect the fat cats trying to deny Oklahomans the care their doctors say they need and the health coverage they deserve," Democratic Leader Charlie Laster said. "Sadly this is not what we believe Oklahomans bargained for nor do they deserve this sort of unprecedented power grabbing in the name of petty partisan paybacks."
Laster said Coffee spoke about the need for the State Senate to be a place where ideas are treated like seeds, rather than bullets, with the ability to grow and not die. He said he was hopeful Democrats would be successful in eliminating a new rule that would make it virtually impossible for any law requiring insurance companies to act responsibly to be heard in the state senate. That hope was quickly dashed, Laster said, when Republicans voted in lock step to include in the rules of the State Senate a provision protecting one single industry—the insurance industry, from being held accountable for denying coverage of certain medical procedures such as colorectal screening and coverage for the treatment and diagnosis of Autism and cancer patients choosing to participate in clinical trials.
"I do not believe there is any other legislative chamber in the country that writes into their rules a provision protecting specific industries, much less an industry as powerful as insurance companies,” Laster said. "We should be embarrassed that Republicans chose to protect their friends in the insurance industry over the need for Oklahomans to have access to affordable health care.”
Laster said he finds it ironic that when Republicans were in the minority they often characterized the Senate as a place where “good bills go to die.”
'Today, Republicans certainly made the statement the State Senate will now be a place where discussion about the health care of all Oklahomans will certainly die without debate," he concluded.

My Loved One is Refusing Treatment

2008-11-21T11:30:00.003-06:00

I received a call today from a young woman who I will call Amber. Amber's mother had a brain tumor removed but is refusing to receive radiation or chemotherapy treatment. Her concern was that her mother was not mentally in her right mind and capable of making sound decisions. This young woman was beside herself and did not know how to address this with her step father. She does not want to make him feel like he isn't doing a good job caring for her mother but she also feels many issues are not being addressed. I advised Amber there could be a couple things going on.

One, her mother made the decision to not have treatment and her step-father is just honoring her wishes. From what I understand her mother is not doing very well and declining rapidly. The doctors may have not given her a very good prognosis and she decided to focus on quality of life and not quantity of life. Her mother may be unable to bring herself to share her decision with her daughter form fear of upsetting her. Her mother definitely is not helping Amber but not communicating her wishes outright. It is always best to communicate to immediate family members what is happening with the disease prognosis and what the decisions are regarding their care. Amber needs to have time to digest and respect her mothers wishes before her mother's health declines to a point where they can no longer talk about it.

The other scenario that could be happening is that her step father could be entirely overwhelmed with everything and may not be following through with the doctors orders. Not in an effort to hurt his wife but in a state of depression,withdrawal and denial. I understand that Amber's mother is experiencing an extreme change in personality. This can be hardest on the caregiver who catches the brunt of rages, cursing and extreme anger. This personality change does happen occasionally and can really catch you off guard if you do not understand what is happening. Due to the location of the tumor and pressure on the areas of the brain that control emotion this can be a part of the disease process especially since she is not undergoing any treatment and she has a very aggressive and fast growing brain tumor. He could be just completely overwhelmed.

My advice to Amber was to get another family member, possibly her grandmother, and have a conversation with her step father and then include her mother. It is important to be open and honest with one another. Trying to spare a loved one emotional pain by not sharing important information only ends up causing hurt feelings and more emotional pain. This might also be a good time to get a spiritual advisor, pastor, clergy involved and have them mediate the conversation. It is good to have someone whom you trust but is not so close to the situation involved who can look at the situation in an unbiased manner.

HOPE Floats, Again!

2008-11-07T16:39:00.003-06:00

We are definately in a time of change. I have a new found sense of hope for our future, our children's future. I feel like for the first time I can exhale....breathe. Hope is not sinking into a pit of despair any longer....we have been thrown a life vest and HOPE FLOATS!!!! Maybe I am thinking a little to naively, but I really feel as though we have definately taken a step in the right direction for cancer patients, health care...all of the above.

I am working on developing a new Patient's Bill of Rights to send to our new President Barack Obama. I would like your input, comments, thoughts, and suggestions. Please get involved and let's help HOPE FLOAT! Let's give our new President the tools he needs to make sure the health care crisis is rectified, that patient centered care is a priority, a right and not a priviledge any longer.

Send your thoughts and let's get started! YES WE CAN!!!

Candidates Positions on Health Care Reform

2008-10-09T11:29:00.004-05:00

I wanted to provide you some good information and links on the Presidential Candidates positions on health care reform. Working in this industry and seeing the devastation that uninsured and underinsured patients and familes experience has made me an avid supporter of universal health care coverage. Let me state my position and reasons for believing this absolutely must happen in order to reduce the cost burden on the American people.

First, Universal health care coverage has been framed by conservatives to mean socialized medicine. However, Universal health care coverage just means, affordable health care for all.

The problem with the free market approach to health care is that health insurance companies are "for profit" entities. In the "for profit" world their goal is to maximize shareholders profits. They make larger profits by not covering high cost sick patients. The free market may work for those who can afford health insurance but absolutely will not work for those who cannot and who are ill.

Did you know that 80% of uninsured patients are employed but just simply do not make enough to cover the high cost of insurance. Maybe they work for a small business (like OKBTF) who simply cannot afford to contribute to employees health insurance. These patients are not free loaders, these are working class families who are living paycheck to paycheck.

Barack Obama's plan for health care reform is the most comprehensive and combines the free market approach with a subsidized insurance for those who cannot afford health insurance. Look guys this is not just about covering the uninsured, it is about health care security for those who are fortunate to be covered by an employer but whose job could be in jeopardy due to the volatile economic times we are facing. Or those of us who pay for private insurance but could be dropped at any time due to a health care crisis.

Quite frankly I no longer want my health care to be in the hands of a bunch of suits sitting in a board room who are watering down benefits to increase share holder profit and do not care if my child is dying of cancer or not.

Give me your thoughts and check out the above link that will break down the candidates positions for you.

Defining a "New Normal"

2008-09-02T13:36:00.005-05:00

We have support group meetings called Strong Mind, Strong Body, Strong Spirit Wellness Classes twice a month. At our most recent class in Tulsa, one of our participants commented on people always talking about a "new normal" and how nothing was normal about a brain tumor. And, you know he is absolutely right. Nothing is normal about a brain tumor. But it lead me to ask the question, "What is normal?".

I believe we define normal to be "activities or perceptions that could or would occur in our daily activities or lives". Interruptions to these expected daily happenings or activities is not considered to be normal.

So the brain tumor diagnosis comes along and life is turned upside down. What we new to be our normal daily activities and life is now a thing of the past. Our new reality is the brain tumor diganosis and all the crap that goes along with that. Unfortunately, this is our "new normal". Why is this our "new normal"? Because this is what becomes regular daily activities, perceptions, and thought processes.

The fact is that life changes in good ways and in bad ways after the diagnosis of a brain tumor hits your family. You will never be same again, NEVER. How can you go back to being the same person you were before when you have personaly witnessed and endured such a thing.

Defining a "new normal" is simply understanding and accepting that you cannot go back, but you can go forward. This doesnt' mean accepting your diagnosis, it means accepting that your life, wisdom, thoughts, emotions, spirituality and outlook on life has changed. This is your "new normal. You may have to define a "new normal" for your self several times over again. I know there have been days, weeks and months that my new normal changed over and over again.

Defining a new normal is simply saying I am going to take what life has handed me today and make the best out of it that I possibly can. I'm not going to look back and concentrate on what I have lost or how things have changed, but I am going to look forward and count my blessings, each and every one of them regardless of small and insignificant they may seem to others.

I would like to recommend a personal actvitity that I like to do with my patients sometimes. Take a piece of paper and list everything bad that has happened due to the brain tumor (that's easy). The hard part is listing the good things that have happened and there are some. For instance, you met someone and was able to develop a lasting friendship, you were able to lead an unbeliever to Christ, you reconnected with a family member or a troubled relationship, you got back in church, you rededicated your life, someone introduced you to the love of Christ and you were saved, you are working less and living life more, you concentrate on the most important parts of your life now God and family. Now what are each of these things worth to you? If you could assign a value to the good things that have happened what would it be? Are they things that you would be willing to give up for you not to have to deal with the brain tumor? Sometimes they are, sometimes they are not. Sometimes you will find the value of the blessings far outweighs the cost of the brain tumor. Somethin to think about....give me your thoughts.

Avastin - Worth the Cost?

2008-08-19T12:09:00.003-05:00

I wanted to share these articles with you. Please give me your thoughts and comments.

New York Times July 6, 2008 - Despite a price that can reach $100,000 a year, Avastin has become one of the most popular cancer drugs in the world. In 2007, sales of the drug reached $3.5 billion, with $2.3 billion in the United States. But studies show the drug prolongs life by only a few months, if that. And some newer studies suggest the drug might be less effective against cancer than the FDA believed when the drug was approved. Avastin also has serious, if infrequent, side effects, some of which can be lethal. And because it is almost always used with standard chemotherapy, patients on Avastin also face chemotherapy’s side effects. If Avastin were inexpensive, or if it truly held cancer at bay, few might care. But Avastin raises troubling questions. What does it mean to say the drug works? Is slowing the growth of tumors enough if life is not significantly prolonged or improved? How much evidence should there be before billions of dollars are spent on a drug? And when should cost be factored into the equation? Some in the pharmaceutical industry believe that the price of Avastin will raise concerns about whether drugs are worth it, leading to a backlash like price controls or restrictions on use.

British Agency Impugns Value Of Four Costly Cancer Drugs
By JEANNE WHALEN August 8, 2008;
Page B5 LONDON --

An agency that advises Britain's health-care system has decided that a group of cancer drugs aren't worth the money, a move that highlights a growing debate over how to balance the interests of patients with soaring drug costs. The National Institute for Health and Clinical Excellence, or NICE, said in a preliminary ruling Thursday that four drugs used to treat advanced kidney cancer -- Roche Holding AG's Avastin, Bayer AG's Nexavar, Pfizer Inc.'s Sutent and Wyeth's Torisel -- aren't effective enough to warrant their high cost and shouldn't be prescribed to new patients in Britain. If the preliminary judgment holds, Britain's National Health Service won't pay for the drugs' use in treating a type of advanced kidney cancer known as renal cell carcinoma. The drugs are prescribed for this purpose in the U.S. and elsewhere in Europe. NICE's decisions are closely watched by governments and health insurers around the globe. Expensive cancer drugs present a particular dilemma for these health-care payers as they redouble their efforts to rein in drug spending. In a statement, Pfizer said it is "disappointed" and "committed to working with NICE to overturn this preliminary guidance." Bayer also expressed disappointment, noting that Nexavar is available in more than 70 countries. Roche and Wyeth didn't immediately respond to requests for comment. NICE will give drug companies, patient groups and others a chance to comment before making a final recommendation. In its preliminary findings, NICE said the drugs extended some patients' lives, but were ultimately not effective enough to justify their expense, which ranges from £3,100 ($6,036) to £6,100 for a six-week treatment cycle. Using data from clinical trials and complex financial models, NICE estimated that the drugs cost between £71,500 and £171,300 for each year of healthy life they give patients. NICE generally thinks that Britain shouldn't pay more than £30,000 for a year of healthy life gained -- also known as a quality-adjusted life year, or QALY.

How Will I Be Remembered?

2008-08-06T17:54:00.005-05:00

I attended the memorial service for my good friend, Bobby Murcer this morning. I took the book "Grace Disguised" by Gerald Sittser with me to give to Bobby's wife Kay. It was a book that really helped me after my son Cade passed in 2000 and I always give a copy to anyone of our families that is grieving. I didn't get to see Kay personally to give it to her but hopefully the usher made sure she received it.

The service really made me stop and think about how I will be remembered. What will people say about me after I am gone? Bobby Murcer was such an amazing person, amazing baseball player, strong Christian man and really good father and husband. The New York Yankees baseball team was there and many of Bobby's closest friends. They told stories about Bobby that made you laugh and made you cry. They all talked of how he never met a stranger and had an uncanny way of making everyone feel important. If you ever met Bobby Murcer you probably called him a friend. That was the thing about Bobby, he never met a stranger. I know he sure made me feel that way the first time I met him. He was such a regular down to earth guy, always laughing and joking and genuinely interested in you and what you had going on.

I think sometimes I am to quick to judge, get irritated and impatient and sometimes just plain don't want to be bothered. I am sure Bobby felt that way sometimes, he just didn't show it. My problem is I wear my feelings and thoughts on my shirt. I just don't hide what I think or how I feel about people very well. If I am upset with you, you will know it. Well, at least I can say I am honest.

I try really hard to be the person that God has for me to be. I work every day to become more like Him. Some days I am more successful than others. Some days I just plain fail. I want and try to treat others with the same respect I want, the same consideration I want, the same kindness and compassion that I want. When Cade died the biggest lesson I learned was to not take life and those you love for granted. Every day is a gift from God.

Life is terminal. It really is. I could leave the office today and get hit by a truck and killed and those of you who are fighting brain cancer would out live me. It could happen to anyone. What is the old saying "there is only one thing guaranteed you will die and you will pay taxes". Funny but true. None of us know what tomorrow holds in store for us. But what is important is what we are doing with the time we have right now.

My question to you......What are you doing with your time? How will you be remembered? Something to think about....

Robert Novak diagnosed with Malignant Brain Tumor

2008-08-05T10:47:00.002-05:00

Tumor forces columnist Novak to retire
He describes tumor prognosis as 'dire,' expects chemotherapy
MSNBC staff and news service reports
updated 1:12 p.m. CT, Mon., Aug. 4, 2008

BOSTON - Conservative political commentator Robert Novak on Monday announced his immediate retirement from the Chicago Sun-Times following the diagnosis of a brain tumor, a prognosis that he described as "dire."
"The details are being worked out with the doctors this week, but the tentative plan is for radiation and chemotherapy," Novak told the Sun-Times.
A week ago, Novak announced that he had been diagnosed with a brain tumor. Novak, 77, fell ill while visiting his daughter and was rushed to Brigham and Women’s Hospital, where he said he was diagnosed with the tumor.
A few days earlier, Novak was given a $50 citation after he struck a homeless man with his car in downtown Washington. Novak kept going until he was stopped by a bicyclist, who said the man was splayed on Novak’s windshield.
Dr. Lynne Taylor, a neuro-oncologist at Virginia Mason Medical Center in Seattle, said residents at the hospital are taught to check for brain tumors in patients who report having a recent car accident in which they didn’t realize they struck something.
“People get spatial and visual neglect of a certain part of their bodies and they don’t realize they’ve done what they’ve done,” said Taylor.
25 years on 'Crossfire'Novak is best-known as the longtime co-host of CNN’s “Crossfire,” where he jousted with liberal co-hosts from 1980 to 2005, when he left to join Fox News as an occasional contributor. Novak is also editor of the Evans-Novak Political Report.
Novak was criticized after he was the first to publicly reveal the name of CIA operative Valerie Plame in a 2003 column. His column came out eight days after Plame’s husband, Joseph Wilson, said the Bush administration had twisted prewar intelligence to exaggerate the Iraqi threat.
The Associated Press contributed to this report.

URL: http://www.msnbc.msn.com/id/26012351/?GT1=43001

Andrew Rice says everyone should have same health coverage as Congress

2008-08-04T14:51:00.002-05:00

By John Greiner, Staff Writer for the Oklahoman

Saying America has a health care crisis, U.S. Senate candidate Andrew Rice called Monday for making health insurance affordable to every American.The Democrat state senator who is running for the post held by incumbent U.S. Sen. Jim Inhofe, R-Tulsa, said American needs leaders "willing to stand up to the special interests" and put the health-care needs of Americans and Oklahomans first."Every family, every child and every veteran should have access to the same health care options that taxpayers make available to members of Congress," Rice said. "This is one of the great moral issues of our time."Accompanying Rice was Nancy Thomason of the Oklahoma Brain Tumor Foundation, who worked on behalf of Steffanie's Law to require health insurance to cover routine medical care for patients in clinical trials.Also with Rice was Wayne Rohde, father of Nick Rohde, for whom the Nick's Law bill was named. It would have required insurance coverage for autism.Both bills died in the state House of Representatives.Rice said his health care solution for the nation would include ideas in those two state bills. He said his plan would:• Make health insurance affordable for all Americans.• Guarantee no one is denied coverage because of pre-existing conditions.• Continue to cover routine medical care for cancer patients who are undergoing clinical trials.• Extend coverage for autism and other mental health care treatments for children and adults.• Guarantee if you change jobs, your health insurance plan follows you.• Include same health care coverage options available to members of Congress• Provide economic incentives for health care providers based on quality of care, not volume of patients.

Cell Phones & Possible Adverse Effects

2008-08-01T12:44:00.000-05:00

CELL PHONES AND POSSIBLE ADVERSE EFFECTS

The North American Brain Tumor Coalition (NABTC) has for a number of years carefully monitored the research related to the potential adverse effects associated with cell phone use. The NABTC urges these precautions in absence of definitive studies regarding the risks of cell phones.

· The Coalition urges the most expeditious possible completion of research studies, including one sponsored by the World Health Organization (WHO), to provide consumers better information about the risks created by their use of cell phones.
· In the absence of conclusive studies, we urge that individuals take simple precautions to limit their cell phone use and that they dramatically restrict the use of phones by children.

Background

It is estimated that almost 220 million Americans and nearly 2 billion people worldwide regularly use cell phones. If cell phones are convenient tools that have become an accepted way of life in the United States, they are the only reliable means of telephone communication in many parts of the world. Cell phone usage is expected to continue to grow worldwide.

Those who use cell phones are exposed to the radiofrequency (RF) energy, a non-ionizing form of radiation, emitted by the phones. Because of the widespread use of this relatively new technology, there is understandable concern about the health implications of use. When the WHO published a fact sheet on cell phones in 2000, it stated, “Given the immense numbers of mobile phones, even small adverse effects on health could have major public health implications.”

Research on Risks Associated with Cell Phone Use

Studies have been undertaken to determine whether RF exposure may increase the risk of cancer. To date, many of the studies have focused on whether RF energy can cause malignant or benign brain tumors.

A “Cell Phone Facts,” document for consumers developed by the Food and Drug Administration (FDA) and Federal Communications Commission (FCC) reviews the research on cell phones that has been completed to date. The document states:

The research done thus far has produced conflicting results, and many studies have suffered from flaws in their research methods. Animal experiments investigating the effects of radiofrequency energy (RF) exposures characteristic of wireless phones have yielded conflicting results that often cannot be repeated in other laboratories. A few animal studies, however, have suggested that low levels of RF could accelerate the development of cancer in laboratory animals. However, many of the studies that showed increased tumor development used animals that had been genetically engineered or treated with cancer-causing chemicals so as to be pre-disposed to develop cancer in the presence of RF exposure. Other studies exposed the animals to RF for up to 22 hours per day. These conditions are not similar to the conditions under which people use wireless phones, so we don’t know with certainty what the results of such studies mean for human health.

Three large epidemiology studies have been published since December 2000. Between them, the studies investigated any possible association between the use of wireless phones and primary brain cancer, glioma, meningioma, or acoustic neuroma, tumors of the brain or salivary gland, leukemia, or other cancers. None of the studies demonstrated the existence of any harmful health effects from wireless phone RF exposures. However, none of the studies can answer questions about long-term exposures, since the average period of phone use in these studies was around three years.

The FDA and FCC recommend additional research and note the challenges of completing the laboratory and epidemiological studies that might offer conclusive data on risks of cell phones. The agencies note that animal studies investigating cell phone use would need to be very large to offer meaningful data, and epidemiological studies might require ten or more years of follow-up. Finally, the agencies note difficulties in measuring actual RF exposure, including which model of phone is used and the angle of the cell phone during use.

A recently published meta-analysis by an Australian neurosurgeon has intensified concerns about the risks of cell phone use and created great interest in the completion of ongoing studies.

Recommended Precautions for Use

Although public health authorities are not in agreement regarding the issuance of public health advisories about cell phones in light of the inconclusive data regarding their risks, most governments have issued precautionary warnings regarding cell phone use. Many of the health agencies that have issued warnings note that the evidence does not necessarily support limitations on use but that the uncertainty regarding safety of cell phones and their widespread use support action.

In its 2000 Fact Sheet on cell phones, WHO stated:

Present scientific information does not indicate the need for any special precautions for use of mobile phones. If individuals are concerned, they might choose to limit their own or their children’s RF exposure by limiting the length of calls, or using “hands-free” devices to keep mobile phones away from the head and body.

The United Kingdom in 2000 urged that cell phone use among children be limited and undertook a leafleting campaign to distribute information about limiting use by children.

In 2006, the Canadian government urged adults to moderate their cell phone use and the cell phone use of their children until the science regarding the risks of cell phones is clear.

The FCC and FDA in the United States say:

If you must conduct extended conversations by wireless phone every day, you could place more distance between your body and the source of the RF, since the exposure level drops off dramatically with distance. For example, you could use a headset and carry the wireless phone away from your body or use a wireless phone connected to a remote antenna.

The US agencies state that the precautions that are employed by adults may also be adopted by children.

In a July 2008 memo to the University of Pittsburgh Cancer Institute faculty and staff, institute director Ronald Herberman, M.D. offered “Practical Advice to Limit Exposure to Electromagnetic Radiation Emitted from Cell Phones.” Dr. Herberman said that release of the ten “prudent and simple precautions” to reduce exposure was based on the recommendations of an international panel of experts convened by the University of Pittsburgh. Those experts stated that, “…electromagnetic fields emitted by cell phones should be considered a potential human health risk.” The memo from Dr. Herberman to his faculty and staff is available at http://www.upci.upmc.edu/news/upci_news/2008/072308_celladvisory.html. The analysis of the panel convened by the University of Pittsburgh is available at http://environmentaloncology.org/files/file/Publications/UPCICellPhonesAppeal.pdf.

Additional Information Regarding Cell Phones

The National Cancer Institute has posted a question and answer document that provides significant information regarding cell phone use and cancer. This document is available at http://www.cancer.gov/cancertopics/factsheet/Risk/cellphones.

The American Cancer Society describes cellular phones and the research on the risks of their use in a document available at http://www.cancer.org/docroot/PED/content/PED_1_3X_Cellular_Phones.asp?sitearea=PED.

The FDA and FCC provide a document called “Cell Phone Facts” at http://www.fda.gov/cellphones/qa.html.

A fact sheet on mobile phones, revised by WHO in June 2000, is available at http://www.who.int/mediacentre/factsheets/fs193/en/print.html. A Q&A document from WHO is available at http://www.who.int/features/qa/30/en/print.html.

Officials Seeking Cause For Tumors Test Soil

2008-07-15T11:17:00.001-05:00

http://www.kctv5.com/news/16882528/detail.html Click the link to read the story.....very interesting.

Remembering my Friend Bobby Murcer

2008-07-14T11:25:00.003-05:00

Yesterday morning I find out that I had lost a very good friend of mine to this horrible disease...Mr. Bobby Murcer. I met Mr. Murcer for the first time in January. I still have the voice mail he left me "Good morning Nancy, Happy New Year this is Bobby Murcer". We met for lunch in Edmond one day with my intentions to convince Mr. Murcer to work with our organization to raise awareness and funds. We grabbed our lunch and sat down at a little table in the very middle of the restaurant during lunch rush. With people hustling and bustling around us, loud chatter and laughter.......he looked at me with those very caring and wise eyes and said let's pray. He reached for my hand and he began to pray.

I began my normal introduction to the Oklahoma Brain Tumor Foundation, emphasizing why I had started the organization and about my son Cade. He listened very intently to what I said rarely taking his eyes off me not even to take a bite of food. When he spoke he said "so you are a Christian?" because I had just explained as I always do that I believe Cade's life and death were specifically so I would start this organization. That this is what God had called me to do, my purpose in life. We talked for over 2 hours that day, the rest of the world was drowned out, it was only the two of us there very interested and enlightened by one another and how God had used this terrible disease to bring us both closer to Him. We discussed how our lives had been forever changed and our eyes opened to the grace and love of our Heavenly Father. Mr. Murcer told me that day he didn't know what God had in store for him but whatever it was he was okay with it. He said,"Nancy call me if you ever want to talk or vent, I know how difficult it can be start a nonprofit or if you ever need someone to pray with you." I promised to stay in touch and he promised to help me and the OKBTF in whatever way that he could. He was focusing on spending time with his family and he was looking forward to going back to work.

We talked several times after that day......always briefly about what was going on with me and the foundation and about how he was doing and feeling. Last time we spoke was about a month ago I had called to see if he had read the article in the New York paper that was written about his book signing. The writer e-mailed me and I had sent some quotes he used for the article. I was very pleased with the article and was hoping he had read it. He said he hadn't seen it but for me to send it to him. He wasn't feeling so well that day and we talked briefly about it, I told him I was praying for him and he said "thank you Nancy I really appreciate that". That was the last time we spoke.

Although I knew him briefly, it was like being in the presence of royalty, very down to earth, kind hearted royalty. I don't know if you have ever had the opportunity to be around someone who made you feel like you were experiencing history in the making but that is how I felt that day eating lunch with him. God gave me the rare opportunity to talk and laugh with an Angel right here on earth.

Put in a good word for me Bobby and tell my son Cade I love him! Until we meet again....

NY Times Article: Progress in Drugs Treating Brain Cancer

2008-07-01T15:06:00.003-05:00

May 23, 2008

Hints of Progress in Drugs Treating Brain Cancer
By ANDREW POLLACK

Robert A. Swanson, who co-founded Genentech and is considered a father of the biotechnology industry, was only 52 when he died in 1999, one year after a diagnosis of brain cancer.
In his own company’s laboratories was a new experimental drug that, it turns out, might have helped him. In recent studies, that drug, Avastin, seems to shrink tumors, although it is still not clear how much longer this may help patients live. Avastin, already widely used to treat other types of cancer, is leading a pack of new drugs that look promising as treatments for brain cancer, one of the deadliest and least treatable forms of cancer. The disease has received public attention this week with news that Senator Edward M. Kennedy has a malignant glioma, the
worst class of brain tumor. While details of the 76-year-old senator’s cancer and his possible treatment are not yet known, glioma has a grim prognosis. Half of people with glioblastoma multiforme, the most common and deadliest of the gliomas, die within 15 months.
For decades, cancer drugs have been unable to make much of a change in those statistics. But now some experts hope that new drugs, some developed using new biotechnology techniques, can improve the outlook. “I think that what you are going to see in the next five years is substantial improvement in survival,” said Dr. Henry S. Friedman, a brain cancer specialist at Duke University. “For the first time the pot seems to be boiling over with a number of different options, while 10 years ago we had nothing.” Already, the brain cancer drug Temodar, a pill sold by Schering-Plough, is on track to surpass $1 billion in sales this year, which would make it the first blockbuster drug for brain cancer. And other treatments still in the experimental stage are showing hints of promise. One is a cancer “vaccine,” which aims to train the patient’s immune system to attack the tumor. An advocate for it is Cameron Mitchell, a 51-year-old man who formerly ran a coin laundry business in Grand Rapids, Mich. One Saturday morning he collapsed at home, writhing in convulsions. It was the first signal of a brain cancer that his doctors said would probably kill him within a year and a half. That was in March 2004. Four years later Mr. Mitchell is leading what he calls a fairly normal life, although he can no longer drive because of occasional seizures. He credits his longevity to the experimental cancer vaccine that he has been taking once a month at Duke. Pfizer recently agreed to pay at least $50 million for rights to the treatment from the biotechnology companyAvant Immunotherapeutics.
In early clinical trials, patients lived roughly 30 months on average, about twice what might be expected. Others being treated in a clinical trial include Bobby Murcer, the New York Yankees broadcaster and former player. Many experts, to be sure, voice caution about the pace of progress against brain cancer. They point out that neither Avastin nor the vaccine has been shown to lengthen lives when compared with a placebo or another other drug in a clinical trial.
Drugs often look good in early testing because doctors, either consciously or subconsciously, choose to try them on the patients with the best prospects. Mr. Mitchell might have survived anyway. “This is a very select population of patients,” said Dr. Jeffrey Raizer, director of the medical neuro-oncology program at Northwestern University. “There are two- to four-year survivors with these tumors who haven’t had the vaccine therapy.” But virtually all experts agree there has been a sharp increase in the number of compounds being tested against brain cancer, in response to new scientific understanding of cancer and the changing economics of
the pharmaceutical business. For decades brain cancer was simply not an attractive area for drug makers. Drugs rarely worked, in part because the blood-brain barrier, intended to shield the organ from certain chemicals in the blood, also blocked the drugs from reaching the tumors.
Moreover, the market was perceived to be small. There are only about 22,000 new cases of all brain and nervous system cancers in the United States each year, only a tenth as many as there are lung cancers, according to the American Cancer Society. The rapid death rate also limits the appeal of developing drugs. “The typical life span isn’t that long, so it doesn’t have the recurring revenue stream, to put it bluntly,” said Stephen M. Case, chairman of Accelerate Brain Cancer Cure, a nonprofit group that spurs research on treatments for the disease. Mr. Case, a founder of America Online, started the group with his brother Daniel, the former chief of the investment bank Hambrecht & Quist, who died from brain cancer in 2002 at age 44.
But the situation is changing. As pharmaceutical companies have been able to sharply raise prices for cancer drugs in recent years, it has become possible for treatments for even rare cancers to have hefty sales — as demonstrated by Temodar. New drugs are considered vital to the fight against brain cancer. Surgery and radiation therapy, which are also mainstays of treatment, might not improve much more. And they still can miss microscopic pockets of
cancerous cells. “We’ve reached our maximum limit that we can achieve with surgery,” said Dr. Keith Black, the chairman of neurosurgery at Cedars-Sinai Medical Center in Los Angeles.
Drugs, which can find those lurking cancerous cells by molecular means, might be the best option for further improvement. Drug therapy made a big gain in 2004, when a trial showed that Temodar, combined with radiation, extended the median survival of patients in a clinical trial to 14.6 months, compared with 12.1 months for patients who received only radiation.
After four years, 12 percent of those who received Temodar, which is called Temodal outside the United States, were still alive, compared with only 3 percent of those in the control group.
Among drugs now in the pipeline, most attention is focused on Genentech’s Avastin. The company says it will file this year for federal approval of the drug to treat glioblastoma multiforme patients who have a relapse. Avastin works by blocking the flow of blood that brings oxygen and nourishment to tumors. On brain scans, Avastin seems to shrink many tumors.
“This is a remarkable, miraculous response on the imaging that we’ve never seen before,” said Dr. Lawrence Recht, professor of neurology at Stanford University. But there is a catch, he and others said. What the scans might be showing is that Avastin is reducing the swelling in the brain caused by leaking blood, not actually reducing the tumor size. Even that can have a benefit because the swelling can cause neurological problems like those affecting speech
or motion. In a clinical trial, patients who got Avastin alone had a median survival of more than nine months. Doctors said such patients might have been expected to live six months.
Other drugs that also work at least in part by blocking blood flow to the tumor are also in clinical trials. Most uncertain are the so-called cancer vaccines, which do not prevent disease like a measles vaccine. Rather they aim to treat the disease by harnessing the patient’s own immune system. No such therapeutic cancer vaccine has ever performed well enough to win approval in the United States. Besides the Avant vaccine, another is being tested by Northwest Biotherapeutics. Eight of the first 16 treated patients have lived at least three years, said Dr. Linda M. Liau of the University of California, Los Angeles, who initially developed the treatment. One of those patients, Kevin Carlberg, a 30-year-old Hollywood rock musician, has lived more than five years, getting married, having a daughter, running a marathon and recording new CDs. “I guess I’m living proof that miracles do happen,” he said. But whether that miracle is because of the vaccine is still open to question.

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Steffanie's Law for Clinical Trial Access

2008-06-30T15:14:00.003-05:00

we need help getting Steffanie's Law for clinical trial access passed in the Oklahoma State legislature next year. Are you interested in helping or finding out more.....

Dont' give up, read this...we're making progress

2008-06-30T15:01:00.000-05:00

Interesting article I found... check it out!

Vaccine May Double Survival In Patients With Deadly Brain Tumors
ScienceDaily (Jun. 3, 2008) — A vaccine aimed at inducing immunity to the most common and deadly type of brain tumor may stave off recurrence and more than double survival in patients, according to a new study led by researchers in Duke's Preston Robert Tisch Brain Tumor Center.
"This vaccine represents a very promising therapy for a cancer that comes out of the blue and robs people of something most of us take for granted -- time," said John Sampson, M.D., Ph.D., a neurosurgeon at Duke and lead investigator on this study. "The possibility of doubling expected survival -- with few if any side effects -- would represent a big step and a lot of hope for this group of patients."
Sampson presented the results of this Phase II study during an oral presentation at the annual American Society of Clinical Oncology meeting in Chicago on June 2, 2008. The study was funded by the National Institutes of Health and Celldex Therapeutics, a subsidiary of Avant Immunotherapeutics, which has licensed the rights to the vaccine and provided vaccine for use in the study.
The vaccine targets a protein expressed on about half of all glioblastoma multiforme (GBM) tumors. The protein, known as epithelial growth factor receptor variant III (EGFRvIII), is not expressed in normal tissues but is prevalent in GBMs, which makes it an attractive target for a vaccine, Sampson said.
The vaccine targets the protein and enhances immune response to it, killing tumor cells that express the protein and preventing the re-growth of brain tumors in patients who have already been diagnosed and treated with standard regimens including surgery, chemotherapy and radiation.
This study included 23 patients, treated at Duke and at M.D. Anderson Cancer Center. Patients had all been diagnosed with GBMs, and had been treated with standard therapy. Patients in the trial received vaccine injections monthly and were given a chemotherapeutic agent called temozolomide in conjunction with the vaccine treatments. The temozolomide is thought to enhance the immune response to the EGFRvIII, Sampson said.
"This reflected something of a surprising conclusion, because it stands to reason that chemotherapy, which suppresses the body's immune system, would make the vaccine less effective," Sampson said. "What we found was that the opposite is true. While the body is recovering from chemotherapy, immune response is actually stronger as the immune system overcompensates in order to right itself. It's the perfect time to introduce a vaccine."
Patients in the study survived without re-growth of their tumors for a median of 16.6 months, which more than doubles the usual 6.4-month expected progression-free survival in these patients.
Study patients lived for an average of 33.1 months; patients who are diagnosed with GBMs and treated with standard therapy typically live an average of 14.3 months.
"We're more than doubling survival time in this group, and we have some patients who are four, five or six years out from diagnosis, which is virtually unheard of in these people," Sampson said.
The vaccine has caused virtually no side effects; swelling at the injection site is often a patient's only complaint. A Phase III trial is now open at more than 20 sites nationwide.
Other researchers involved with this study include Gary Archer, Darell Bigner, Henry Friedman, Duane Mitchell and David Reardon of Duke; Amy Heimberger and Raymond Sawaya of M.D. Anderson Cancer Center; and Tom Davis and Tibor Keler of Celldex Therapeutics.