Support for LateToSchool

mafool · March 17, 2008, 6:21pm

And maybe you, of all people, could convince the Gates Foundation to join you.

epistrophy · March 17, 2008, 7:41pm

another lung cancer “survivor”

“15% Chance of Survival Becomes 100% Drive for Cancer Cure”

When Jamie Young went to the doctor with a nagging cough about five years ago, the last thing she thought she’d be told was she had lung cancer.

But after receiving that shocking news there was more: Because she had infected lymph nodes on both sides of her lung, she would not be a candidate for surgery.

“Once it crosses over to the opposite side of the tumor, it’s characterized as locally advanced and inoperable,” she said. “Surgery would not prolong my life any.”

Knowing that, Young and her doctors moved forward with an aggressive treatment regimen they hoped would prolong her life. With research telling her there was about a 15 percent survival rate, Young’s outlook on life was not good.

“Right after diagnosis I went into a pretty deep depression for about a month, thinking that life was over as I had ever known it and I probably would not live to see my son start school,” Young said. “I knew with the prognosis with my stage of disease, it was like 15 percent survival for five years. And so at that point I was really scared about that.”

Young stayed depressed for about a month before she decided she would be among the 15 percent who do survive. To do that, the former middle school band director knew she needed to get involved in things that would help her look toward the future.

At the same time, she wanted to be involved in something that would allow her to give back to the communities that she felt had helped her:the music community and the cancer treatment community.

Therein was born Playing for a Cure.

Finding a cure through music

Playing for a Cure is a middle school and high school band competition. Students can choose to participate in the full band, solo or ensemble categories. The money that is raised from the event goes directly to the LUNGevity Foundation in Chicago, an organization dedicated to funding lung cancer research and providing support to the lung cancer community.

This is the third year for the band competition, which will be held March 8. Young said she doesn’t yet know where the competition will be held, though it probably will be at White Station Middle School.

Playing for a Cure raised $8,000 last year. The money was raised through entry fees and sponsorships through advertisements in the program. And 125 percent of that went to the LUNGevity Foundation.

It’s 125 percent because organizations such as the American Cancer Society match a certain percentage of what is raised by Playing for a Cure. 

Because of word spreading about the competition, Young said she is hoping to have more bands participate in March, increasing the amount of money that will be donated to the foundation.

Using a band competition to raise money for cancer research makes sense because music is close to Young. She was a band director at Wooddale Middle School and was coming up on her 10th year of being a band instructor when she was diagnosed with lung cancer. She currently works as a part-time band director at Bellevue Baptist Church.

Shining a spotlight

For area band students, Playing for a Cure is an opportunity to show off their talents and try to win prize money. But it’s also a way for all those involved to contribute to an organization that funds lung cancer research.

“It gives the kids another avenue to play their instruments in a band setting,” Young said, adding that another one of the highlights is the platform it gives to those afflicted with the disease.

Survivors are invited to speak at the competition. Displays are set up in the school where the event is held with personal stories from people all over the country who’ve been diagnosed, treated or affected by lung cancer.

“I wanted to be able to recognize survivors and people who are dealing with the disease,” Young said, “because there is a stigma that goes along with lung cancer, which is namely (the belief that everyone who gets lung cancer got it from) smoking. A lot of times when people are diagnosed with the disease they may keep it hidden and won’t tell anybody that they have it because they’re in fear of someone saying, ‘Well you brought this on yourself because you were a smoker.’”
Young was diagnosed with adenocarcinoma, which is not the type of cancer typically found in smokers.

Eye on the future

As for Young, she’s been cancer-free for the last two years. Two years ago, she began taking a new targeted treatment drug called Tarceva.

Though she now is cancer-free, Playing for a Cure is something Young said she hopes to continue for years to come.

Comparing lung cancer research to the evolution of AIDS, Young pointed out that when AIDS first was discovered, there was a stigma attached to it as well as a lack of substantial funding. But as more knowledge about AIDS has made its way to the public, funding began to pour in and it has led to new treatments. 

“And I’m hoping to bring that to lung cancer,” she said. “That would happen in the next 10 years or so, so that if my child, which I know he has a predisposition for this now, because his mother has it … I want to make sure that if it does happen, which pray it doesn’t, but if it does, there are treatments available where he doesn’t have to fear for his life.”

[Memphis</a> Daily News - 15% Chance of Survival Becomes 100% Drive for Cancer Cure - 11/23/2007](<a href=“Memphis Daily News - Name & Property Search - Business, Government, Politics, News, Public Records, Public Notices, Crime Report, Neighborhood Report, Marketing Lists, Research”>15% Chance of Survival Becomes 100% Drive for Cancer Cure - Memphis Daily News)

BunsenBurner · March 17, 2008, 8:40pm

Burn, cancer, burn - the scientists are after you!

[Print</a> Story: Frying Tumors Can Boost Lung Cancer Survival on Yahoo! News](<a href=“http://news.yahoo.com/s/hsn/fryingtumorscanboostlungcancersurvival&printer=1]Print”>http://news.yahoo.com/s/hsn/fryingtumorscanboostlungcancersurvival&printer=1)

<a href=“http://www.sirweb.org/news/newsPDF/2008am/Mon/LungRFA_Final.pdf[/url]”>http://www.sirweb.org/news/newsPDF/2008am/Mon/LungRFA_Final.pdf</a>

MONDAY, March 17 (HealthDay News) – Needle-delivered frying or freezing technologies can be useful weapons against both lung and kidney cancers, new research shows.

In one study conducted in France, patients with advanced lung cancer who were not candidates for surgery underwent a procedure known as radiofr equency ablation (RFA), which basically heats the tumors and kills them.

Seventy percent of the patients with lung metastases or primary non-small cell lung cancer were still alive after two years – similar to results seen after surgery. 

Furthermore, 85 percent of patients with non-small cell primary lung cancer treated with RFA had no viable tumors visible on imaging one year later, while 77 percent had no viable tumors after two years.

“It means that you can actually do a very good job of local control of lung tumors in patients who aren’t fit for surgery,” said Dr. Damian Dupuy, a professor of diagnostic imaging at Warren Alpert Medical School at Brown University and director of tumor ablation at Rhode Island Hospital in Providence.

“The medical establishment, being very conservative, has always said if you aren’t fit for surgery you just basically get chemo and radiation and most of the time [they] don’t work well and you die of your tumor. But even the most unfit for surgery can have this procedure safely,” Dupuy said.

The Brown researcher was not involved in the French study, but his group completed a lung cancer trial last year with similarly good results.

The new study, led by Dr. Thierry de Baere of Institute Gustave Roussy, in Villejuif, France, was to be presented Monday at the annual meeting of the Society for Interventional Radiology in Washington, D.C.

Lung cancer is the number one cancer killer in the United States and a full 25 percent of patients who have operable disease can’t undergo surgery because of co-existing conditions, Dupuy noted. 

“This is a huge advance for them,” he said. “This procedure is done at almost every hospital that has an interventional radiologist, which is most. It’s like a lung biopsy.” 

“If you have to stick a needle in to diagnose lung cancer anyway, why not do it in a single sitting?” Dupuy asked.

Most patients go home the same day, he noted. According to Dupuy, the p rocedure may also hold promise for pain relief in patients who are dying.

NYMomof2 · March 17, 2008, 11:18pm

LTS, I think you’re absolutely right that the system is full of perverse incentives. What was done to you is probably institutional policy on some level.

You were right to back off the situation when you did, and to keep the focus on your treatment. But I imagine they won’t mess with you again!

JEM · March 18, 2008, 3:31am

LTS, I fully appreciate your decision and concur that you should focus your fighting energies on your cancer, at least for now.
Once again you are demonstrating your great emotional intelligence, in addition to all the other intelligences you have.
Best wishes for the rest of the week, and I wish you and your daughter a blessed Easter.

epistrophy · March 18, 2008, 7:11am

“Commentary: We Must Give Lung Cancer the Attention It Deserves”

Gregory A. Otterson, MD
Medical Director, Thoracic Oncology, The Ohio State University Comprehensive Cancer Center-Arthur G. James Cancer Hospital and Richard J. Solove Research Institute.

Lung cancer is the leading cause of cancer death in the United States and worldwide. There are more deaths annually in the U.S. from lung cancer than colorectal, breast and prostate cancer combined. This has been true for well over a decade.

Despite the overwhelming statistical data, however, this disease has received relatively poor research funding on the national and international levels.

The National Cancer Institutes (NCI) Financial Management Branch estimates that in 1993, $173 million dollars was spent on AIDS research. That same year, $211.5 million was spent on breast-cancer research and $92.6 million on lung cancer by the NCI.

Today, this inequity has improved, but by no means completely. In 2003, the NCI spent $263.4 million on AIDS, $548.7 million on breast cancer and $273.5 million on lung cancer1. The American Cancer Society (ACS) estimates that 40,200 people (mostly women) died of breast cancer in 2003. Roughly, this means that NCI spent $13,650 per breast cancer death. Similarly, the ACS estimated 157,200 deaths due to lung cancer in 2003, and the same rough calculation reveals that the NCI spent $1,739 per lung cancer death.

These simplistic calculations are not meant to estimate the worth of a human being or to cry that my disease deserves more than your disease. But they do raise an important question: Why is lung cancer research so poorly funded?

Other evidence illustrates the problem, too. Consider how many 1 Mile fun runs and 5K and 10K runs are held for breast cancer, ovarian cancer and Alzheimers disease each year. Few fund-raisers are held for lung cancer. Compare the number of red, pink or yellow ribbons worn by celebrities attending the Academy Awards and other ceremonies with the number of clear ribbons, which symbolize lung cancer.

Why do these disparities exist? I propose four reasons:

Stubbornly poor cure rates. The cure ratetranslated as 5-year survivalfor lung cancer has changed little in 30 years. From the mid-1970s to the mid- 1990s, the 5-year survival rates for the second, third and fourth leading causes of cancer death colorectal, breast and prostate improved from 50 percent to 61 percent, 75 percent to 86 percent, and 67 percent to 96 percent respectively. Lung cancer, on the other hand, went from 12 percent in the 1970s to a mere 15 percent in the 1990s.

True, we have made gains in lung cancer treatment. Today, nearly 40 percent of patients with metastatic lung cancer are alive after one year compared to only 10 percent in the 1970s. And two-year survival is now nearly 15 percent, better than the one-year survival 20 to 30 years ago. In addition, chemotherapy is better tolerated, its side effects are much better controlled, and in general, the quality of life even for those with a terminal diagnosis is demonstrably better than in the past. But improvements in the cure rate have been slow in coming for lung cancer.

Lack of a charismatic spokesperson. Someone such as John Wayne, Rosemary Clooney, or George Harrison could fill this role, but then they died from their disease. Interestingly, even death does not necessarily stop some charismatic spokespeople. Think of Gilda Radner (and her husband Gene Wilder), whose name continues to increase awareness of ovarian cancer, another silent killer.

Embarrassment related to smoking. The lack of a spokesperson is due largely to the third factor, embarrassment related to smoking. There is a sense that, I brought this on myself. These notions of guilt, shame and responsibility because a person has smoked are a heavy burden for some patients and families. Patients often feel that there is a moral stain upon their character since they were unable to quit the instrument of their death. The reality, of course, is much more complicated. In 2004, only 40-45 percent of lung cancer patients are current smokers and about 15 percent have never smoked. The remainder have successfully kicked the habit, often many decades before their diagnosis.

Low socio-economic status of smokers. This factor is well documented but rarely acknowledged: Smoking is much more prevalent among those with lower socio-economic status. Does this explain why there is less recognition, less media attention, and ultimately less concern by society for those addicted to cigarettes and those who ultimately develop cancer? No clear arrows can be drawn, but the association remains.

What can be done? I believe its time to politicize lung cancer. Questions need to be asked and answered. Does the lack of improvement in lung cancer survival from the 1970s to the 1990s reflect a stubborn and deadly disease, or does it reflect a lack of commitment and focus on the part of our funding agencies, academic cancer researchers and politicians?

I believe both are true. It is time to refocus and recommit to this disease and, more importantly, to the patients with this disease. The addictive nature of tobacco and the harm caused by its use calls for stringent regulation of tobacco, but that still has not happened. Here at home, the OSU CCCs commitment to lung cancer ranges from the concrete studies are under way of new therapies, delivery methods and chemopreventive agentsto the philosophical. For example, OSU CCC members cannot accept direct research funding from the tobacco industry.

Embarrassment, guilt, shame and blame have no role in medicine. The AIDS community quickly learned this and has effectively communicated it to politicians and decision makers. The lung cancer community patients, families, health-care workers and researchersneed to take to heart the lessons of the AIDS and breast cancer communities and effect change.

[Commentary:</a> We Must Give Lung Cancer the Attention It Deserves](<a href=“http://www.jamesline.com/news/publications/frontiers/archives/?ID=1407&CID=0]Commentary:”>http://www.jamesline.com/news/publications/frontiers/archives/?ID=1407&CID=0)

epistrophy · March 19, 2008, 8:36am

first the North Pole [see #1758] . . . .

“From one end of the planet to the other”

Barbara Hillary reached the North Pole on April 23, 2007, only to realize that she wasnt satisfied to rest on the distinction of being the first known black woman to reach the top of the world.

Now Hillary is planning a trip to the South Pole, and she was in Montana this week to train.

Speaking from the Lone Mountain Ranch near Big Sky Saturday, her penchant for irony was apparent.

I dont know what happened to my genes, she said, laughing. Lets keep it real. Whens the last time you saw a brother frozen on the side of a mountain? If you see it, take a picture.

But on a more serious note, Hillary is extraordinary on many fronts.

Yes, shes black and, yes, shes a woman. But shes also 76 and a lung-cancer survivor. Having lost part of one of her lungs to the disease, she had some reservations about how that would affect her performance at the North Pole, she said. But that didnt stop her.

A former nurse with a graduate degree in gerontology, when she retired, Hillary said she was looking to travel, but didnt find anything that really sparked her interest until she decided to go to the wilds of Ontario, Canada, to see and photograph polar bears in their native habitat.

I dont like anything John Doe, she said.

Shes always looking for something unusual, she explained n like the 1974 Buick she still drives around Queens where she now lives.

You can be a free thinker. You dont have to follow the crowd, she said.

She came to Montana to train for the South Pole expedition n scheduled for late 2008 – to experience the elevation and to get back on skis. She trained with cross-country ski instructors Amy Langmaid and Herb Davis during her week at Lone Mountain.

Preparing for an expedition is heaven and hell, she said. Training is the heaven. Fundraising is the less palatable part. She lives solely on Social Security and her trips are funded through donations and money she receives from public speaking.

Raised in Harlem, N.Y., her father died when she was a year old, leaving her mother to raise her and her sister alone. Her mother was her hero, she said.

She gave me the underpinnings and taught me that nobody owes me anything. There was no such thing as woe is me in our house, she said. If you want something, you get up off your ass and work and do something about it.

Hillary said she loved her trip to Montana and would come back again. She also said shed be thrilled to place a Montana flag at the South Pole if Gov. Brian Schweitzer sent her one.

She hopes her story is an inspiration to many. Its about survivors, its about women, its about older people and its about humanity, she said.

[Bozeman</a> Montana Local News](<a href=“From one end of the planet to the other”>From one end of the planet to the other)

epistrophy · March 19, 2008, 6:42pm

“Lung Cancer Alliance Commends Leadership Of MA State Senate” 

Lung Cancer Alliance praised the efforts of State Senator Susan Fargo for helping shepherd first-ever lung cancer research funding bill through the Massachusetts State Senate Committee on Revenue. Senate Bill #2454 would establish a “trust fund,” known as the Commonwealth Lung Cancer Early Detection and Treatment Research Fund, which would be funded by a percentage of the cigarette tax and would support research grants for early detection and treatment.

“Lung cancer is the leading cause of cancer death among men and women nationally and in Massachusetts,” said Senator Fargo. “This year alone 3,360 Massachusetts residents will succumb to this disease. This is unacceptable, and it is time that we addressed this public health epidemic with the compassion and support it rightly deserves. I am confident that Massachusetts can and will lead the way.”

Dozens filled the committee room to testify or submitted letters in support of the legislation. “No one deserves lung cancer,” said Diane Legg, a survivor and State Co-Chairwoman of Lung Cancer Alliance - Massachusetts (LCA-MA). “This is one of the most exciting days for me since my lung cancer diagnosis. Fortunately my lung cancer was caught early – which is why helping others at risk detect and treat their lung cancer earlier is absolutely critical. Thank you, Senator Fargo for your leadership on this issue.”

Lung cancer claims more lives each year than breast, prostate, colon, liver, kidney and melanoma cancers combined. Over 70% of those diagnosed with lung cancer are diagnosed at late stage which accounts for its low five-year survival rate of 15%. In addition, 60% of those now diagnosed quit smoking decades ago or never smoked at all.

“It makes no difference whether you smoked or not,” said Joanne O’Connor, who lost her sister to lung cancer and is LCA-MA State Co-Chairwoman. “What matters is that lung cancer is a disease and no longer should be ignored or stigmatized. Too many are dying needlessly because of the lack of more robust early detection and treatment programs.”

The Joint Committee on Revenue will have until March 19th to act on the bill. The bill will proceed to the Ways and Means Committee if ruled upon favorably. LCA-MA will continue to collaborate with all other public health leaders, including the American Lung Association of New England, to advance this ground breaking legislation.

Lung Cancer Alliance ([Lung</a> Cancer Alliance](<a href=“http://www.lungcanceralliance.org%5DLung”>http://www.lungcanceralliance.org)) is the only national non-profit organization dedicated exclusively to patient support and advocacy for those living with or at risk for lung cancer. Lung Cancer Alliance is committed to leading the movement to reverse decades of stigma and neglect by empowering those with or at risk for the disease, elevating awareness and changing health policy.

[Lung</a> Cancer Alliance Commends Leadership Of MA State Senate](<a href=“http://www.medicalnewstoday.com/articles/100587.php]Lung”>http://www.medicalnewstoday.com/articles/100587.php)

mommusic · March 19, 2008, 10:45pm

It just occurred to me…the years that lung cancer was attributed solely to smoking (even if the victim smoked very briefly and quit) allowed us to be so complacent about it…just as we used to be about AIDS. The disease was terrible, but it affected only a certain segment of the population, and if that wasn’t us, well Okay!

Times have changed, and for the better.

epistrophy · March 20, 2008, 7:42am

“[Lung] Cancer survivors give message of hope”

LUNG cancer survivors today delivered a message of hope as health bosses revealed the deadly extent of the disease in Doncaster.

NHS Statistics reveal Doncaster has one of the highest rates of the disease in the country, ranking 16th out of all 152 primary care trust districts in the UK.

Doncaster is also diagnosing 39 per cent more new cases of lung cancer every year than the UK average - and the disease kills four in the borough each week. But today survivors Barrie Scothern, from Tickhill, and Wheatley woman Sue Levan told how they fought the disease and won.

They spoke as Doncaster Primary Care Trust launched a campaign to improve survival rates.

The campaign - called Cough, Cough - aims to encourage people with a persistent cough to visit their GP. Retired teacher Sue told The Star: "I was 47 when I started to get breathless and then I got a dry, painful cough.

"My doctor was treating me for asthma and it wasn’t working so I insisted on seeing a specialist. A few days after my appointment, he diagnosed lung cancer and said I needed to get started on treatment straightaway.

"It was nowhere near as bad as I imagined. Now, 14 years on I am free of cancer and have a beautiful family with four grandchildren.

“I was fortunate. I knew something wasn’t right and did something about it, so the treatment I had worked. I don’t like to think what would have happened if I’d waited.”"

Retired policeman Barrie, 70, was diagnosed with lung cancer in July 2006, and thanks to doctors spotting the disease early has been given the all clear.

He said: “I’m all for the campaign. All local people with a lingering cough should visit their doctor’s surgery and get it checked out.”

[Cancer</a> survivors give message of hope - The Star](<a href=“http://www.thestar.co.uk/doncaster/Cancer-survivors-give-message-of.3898615.jp]Cancer”>http://www.thestar.co.uk/doncaster/Cancer-survivors-give-message-of.3898615.jp)

4Giggles · March 20, 2008, 7:58am

LTS- So glad you are putting that fight aside … for the moment. Maybe you can have that lawyer friend of yours put down all the events as they are clear in your mind, and then at a later date you can move forward on that front.

Wishing you a peaceful Easter with your wonderful daughter.
4Giggles

epistrophy · March 20, 2008, 9:20am

As I was eating breakfast one morning, I overheard two oncologists discussing the papers they were to present that day at the American Association of Clinical Oncology. One was complaining bitterly, ‘You know Bob, I just don’t understand it. You and I use the same drugs, the same dosage, the same schedule, and the same entry criteria. Yet, I got a 22% response rate, and you got a 74% percent. That’s unheard of for a metastatic lung cancer! How do you do it?’ The other doctor responded, 'We’re both using Etoposide, Platinol, Oncovin, and Hydroxyurea. You call yours EPOH. I tell my patients I’m giving them HOPE. Sure, I tell them this is experimental, and we go over the long list of side effects together. But, I tell them that we have a chance. As dismal as the statistics are for this thing, there are always those who do really well.–Dr. William Buckholtz [correct spelling is Buckholz]

[Easter</a> 7C](<a href=“http://home.twcny.rr.com/lyndale/Easter%207C.htm]Easter”>http://home.twcny.rr.com/lyndale/Easter%207C.htm)

THE MEDICAL USES OF HOPE
by William M. Buchholz, MD

" Hope is the thing with Feathers
That perches in the soul and sings the tune without the words
And never stops at all."
(Emily Dickinson)

Too frequently patients will complain, “The doctor gave me no HOPE,” as if it were a sample or prescription that should have been offered along with the rest of the treatment. If HOPE were a medicine and listed like other drugs in the PDR, the entree might look like this.

Clinical Pharmacology:
HOPE is a naturally occurring substance created by an individuals ability to project himself into the future and imagine something better than what exists in the present. It serves as a co-factor for most purposeful behavior and is necessary for coping with fluctuating feelings of despair, depression, fear, anxiety and uncertainty.

HOPE has three components: The individual hoping; the projection into the future (expectation); and the object, event, or state desired.

Individuals experiencing HOPE vary with respect to the density and binding constants of HOPE Receptors. There is both up- and down- regulation of receptors depending on the danger of the circumstances , the individual’s sense of vulnerability, and the support system available. Certain individuals have a pathological need for HOPE and are susceptible to False HOPE.

Expectation, comprised of the subunits Credibility and Attainability, is conveniently measured as a vector having units of distance and difficulty (X,Y). Even if there is a strong belief that a goal is possible (Credibility), if the individual perceives it to be too difficult to attain, or that it is impossible to project himself into the future, Expectation will be low. Both intellectual and emotional Expectancies must be above threshold levels for HOPE to be effective.

The Object Desired is the most visible aspect of HOPE and may be expressed concretely or implied, (e.g. “I hope the surgery will cure the cancer. I hope everything turns out all right.”) The strength of HOPE often depends on the meaning or importance (Preciousness) of the Object.

Pharmacokinetics:
After administration either verbally or visually HOPE enters cortical and thalamic pathways where it is processed for Credibility and Attainability. If receptors are blocked by depression, anxiety, or distraction there is no binding and HOPE dissipates immediately. Depending on the number and avidity of open receptors, there is an immediate effect that has a half life of minutes to hours. Longer effects require repeated administration. Both sensitivity and tachyphalaxis can develop depending on how often the Desired Event occurs or does not occur.

Indications:
HOPE is indicated in the treatment of HOPE Deficiency, Depression, Anxiety and to increase Motivation and Compliance with treatment. It is useful in relieving fear, pessimism, and a sense of vulnerability. It increases energy and courage in all individuals, resulting in greater likelihood of difficult goals being accomplished.

HOPE should be given at the initial diagnosis of a potentially fatal disease, at any recurrence and when the disease is terminal. It should also be used when dealing with chronic “benign” diseases such as arthritis, diabetes and hypertension. It should be given whenever despair is anticipated.

HOPE Deficiency (Hopelessness) is a state of despair characterized by the inability to anticipate any positive outcome. Patients are generally unable to act decisively, make decisions, have meaningful relationships or experience joy or meaning. They are described as having “given up.” The Will to Live is diminished in proportion to the degree of hopelessness.

Contraindications:
There are no known contraindications for giving HOPE.

Mechanism of Action:
Depression is characterized by the inability to imagine anything different from the present. HOPE, because of the component of Expectation, relieves the inability to project into the future. HOPE allows such individuals to create a possible future, thereby relieving the onus of living in the present. The anticipation of pleasure relieves pessimism.

Anxiety, characterized by a sense of loss of control, is alleviated by predicting a desirable future event, thereby providing an anchor for the individual in the midst of free-floating anxiety. The sense of aloneness is relieved by anticipating allies or help. Fear, which consists of projecting into the future an undesirable event (helplessness, pain, etc.) is redirected by the expectancy of a positive rather than negative outcome. Motivation to accomplish goals and compliance with medical treatment are increased by a sense that the goal is attainable.

Warnings:
False HOPE is the intentional or inadvertent creation of the expectancy that a low probability outcome is likely. It is a violation of medical ethics to intentionally deceive a patient for the purposes of manipulating their behavior. Physicians and nurses generally try to avoid any appearance of False HOPE and may generate False Despair instead. Certain individuals, because of a high need for HOPE based on the seriousness of their condition or their premorbid personality characteristics, are prone to misinterpret information given and develop False HOPE or False Despair even when none is intended. Patients generally use False HOPE to diminish the full emotional impact of an intolerable situation.

False Despair is the intentional or inadvertent discrediting of any probability that a desired outcome is possible. In order to avoid any suggestion of False HOPE some medical professionals will purposely lower patient expectations to avoid any chance of disappointment. Patients likewise may avoid the disappointment of unrealized hopes by purposefully keeping their expectations low, feeling it is safer to expect the worst. It is a violation of compassion and the Hippocratic oath to purposely withhold HOPE of a low but finite probability outcome from those patients who desire it. It may be pointed out that even under the bleakest of circumstances there are some survivors.

Usage in Pregnancy and Children: HOPE is safe during Pregnancy. It passes into the breast milk and is known to be safe for infants. HOPE may be used in pediatric patients, adjusting language but not dosage according to age.

Adverse Reactions:
Adverse reactions occur when physicians or nurses, out of a desire to please the patient, try to appear more powerful than they are and manipulate patient behavior by substituting False HOPE for True or Realistic HOPE. Patients likewise may distort ethically administered True HOPE out of an inability to cope with reality. False HOPE leads to persistent denial of reality and poor judgment. It causes 1) persistent goal oriented behavior toward an unobtainable goal; 2) distraction from necessary activities; and 3) delay in resolving emotional issues. There are no adverse effects of True HOPE.

Overdosage:
Individual’s capacities for HOPE vary considerably. Excess True HOPE is very rare. More common is the medical personnel’s assessment that the patient’s estimate of outcomes is “unrealistic.” Conflict arises when the patient’s need for HOPE differs from the nurse’s or physician’s. If overdosage is suspected, however, the patient must be assessed carefully and the consequences of acute HOPE Deficiency considered. Acute HOPE Deficiency may precipitate sudden depression and increased anxiety. Withdrawal of HOPE must be done slowly and gently.

Withdrawal:
If it is determined that the patient is using False HOPE and suffering one or more of the above mentioned adverse reactions and the danger of the continued False HOPE state is greater than precipitating Acute HOPE Deficiency, the patient may be withdrawn carefully. Efforts should be made to substitute another goal for the previous unobtainable one, preserving the positive expectancy while the goal is shifted. This may be done more easily if it is recognized that the patient is actually in a HOPE Deficiency state of fear and depression.

Dosage and Administration:
Dosage and duration of treatment must be individualized. The only limit on maximum dosage is the patient’s ability to receive and the professional’s ability to administer HOPE at an appropriate rate.

HOPE must be administered in a form compatible with the patient’s receptor system. Patients with a predominance of Factual HOPE Receptors are best given HOPE in the form of facts and statistics, phrasing them according to “the glass is half full” philosophy. For patients with a predominance of Emotional HOPE Receptors manifesting symptoms of anxiety and depression, HOPE should be administered in a form that can be digested emotionally. “Living proof” stories about other patients who have done well in similar circumstances are more easily accepted and can be applied directly to emotional wounds.

At the time of diagnosis. Because excessive information may block receptor sites for HOPE, patient’s needs should be determined before either Information or HOPE is given. Open ended questions such as “What have you been told?” or “What do you think is the matter?” will elicit responses that indicate primary needs for Information (intellectual) or encouragement (emotional). Information should be given in amounts that will not overwhelm the patient’s ability to incorporate it. Such overload increases the distortion of the Information and produces either anxiety or numbness. Unless specific actions based on this Information must be taken immediately, attending to emotional needs by giving HOPE first before Information will create a more credible physician-patient or nurse-patient relationship.

During therapy. HOPE is easily administered with technical interventions. Patient HOPE may exceed the professional’s HOPE. If HOPE is necessary for the patient to cope and there is no contraindication (see False HOPE above), then HOPE should be maintained as long as possible.

When “nothing else can be done.” This is the most critical situation in which HOPE must be administered. Both medical personnel and patients must shift the object of HOPE to something that is more credibly obtainable, maintaining a positive expectancy while changing goals. Generally it is possible to offer HOPE for comfort. It is always possible to offer the commitment to be there for patients as they die. Often that is enough.

How Supplied:
There is no standard dose. Individual patient needs and individual personnel styles determine how HOPE should be given. Listening carefully to both verbal and non-verbal communication will often suggest the best preparation of HOPE to use. Sometimes it is pointing out that even though the chances are slender, there is at least a chance. Sometimes it is just being there, with a gentle smile and a promise not to abandon the patient. Sometimes the greatest challenge is keeping a sufficient supply on hand for the personnel dispensing it.

[Insight</a> Journeys](<a href=“http://www.insightjourneys.com/buchholz.htm]Insight”>http://www.insightjourneys.com/buchholz.htm)

JEM · March 20, 2008, 9:37am

^^^Epistrophy, you are phenomenal in the volume of inspiring citations you find. Thanks so much for your many wonderful contributions to this thread.

Thanks as well to the many other posters who are supporting our member LTS through her fight.

latetoschool · March 20, 2008, 9:38am

Epistrophy, thank you once again for the links and information, I do sincerely appreciate it. I ordered Healthy Holistic Aging, and am very curious interested to read it.

4Goggles, thank you for that, I seriously do not know what I would do without a LOT of people surrounding me and supporting me. Last night, the lawyer, my daughter, and three other friends were hard at work around the dining room table, documenting very benign issues and events. (did I get Procrit or not? why not? when was I last given Neulasta? are all the blood count reports in one file now? where are the doctors notes on the matter of this weeks chemo? who is going to follow up on this question of does she need this procrit shot or not?) and then they’re all comparing notes about this doctor said this and that doctor said that…and so on…it seems as if it takes an entire community of interest to fight one very cowardly cancer. It is astonishing to me how much information I miss completely, or simply do not grasp, or that sails right over my head. It must be a by-product of the stress of the fight. Or perhaps I know others have the ball so I let it go. I am so grateful to have this level of support, and it makes me all the more determined to find some way to impactively help those who do not have this.

Having said that, some rather unfortunate news. The new MRI - which took a more intensive resolution - showed three more mets, all subcentimeter, but unfortunately now a total of six. I am no longer a candidate for cyberknife, and now have only the option of whole brain radiation.

The abridged version of yesterday’s events is that I have looked at the films and read the reports myself; I have spoken with three different doctors and even managed to quickly get a second opinion. I am satisfied that my doctors are correct and that whole brain radiation is the only option.

The troubling news is that the life expectancy for people in this situation is a matter of weeks. However, all three doctors told me that the life expectancy is so low because of the condition of the patients in this situation going in.

They told me that for a patient like me, with no other comorbidities (sp?) and no other health issues, who is still working every day, excellent performance status, etc., they throw the reports and statistics out the window.

I also have a note from the second opinion doctor that he does have a few patients who have lived for some number of years following whole brain radiation (although he did not say - and I did not ask - if they had small cell vs. other cancers).

I have not made a final decision and will not until Monday, but, I would be interested to hear if there are any survivor stories specific to whole brain radiation. I have located three survivors, however, none of them are working or functioning in any professional capacity - although they probably could if they tried (just guessing)…

Mommusic, I agree, times are changing…

latetoschool · March 20, 2008, 9:42am

JEM, we cross-posted, but, yes, I cannot say often enough how grateful I am for the information Epistrophy provides, especially considering the weight and time constraints of an active trial…

These links - in addition to empirical data - offer hope. I am convinced that the single most powerful weapon in this fight is psychological fitness.

mafool · March 20, 2008, 9:43am

Holding you, your doctors, your daughter, and your friends in my heart.

JEM · March 20, 2008, 10:03am

LTS, I am very affected by your sobering news. But yes, you are “a case of one” and yes, your doctors realize that – which is why they are going to “throw the reports and statistics out the window.”

I like to think that one day YOUR example will be among those that an “epistrophy-type” poster will be sharing to inspire others.

Meanwhile, I am glad to hear about your terrific IRL support team. Please thank them from your cyber friends.

As you have said so many times, you are truly unusual in the level of resources, support, stamina, determination, etc. at your command. (And yes, I use the term “command” very deliberately!) That HAS to make a big difference.
I am counting on it.

Meanwhile, I hope you have a lovely Easter day with your very dear daughter.

mythmom · March 20, 2008, 10:09am

latetoschool: None of us is giving up. You are with me every day. And yes, it is Easter and cherry blossoms. Breathe them in.

I have no experience with brain radiation, but my guess is given who you are if you did have any side effects you could work them through and recover full brain function. Just a guess. No real info for you. I wish I did.

Listen to Wagner’s Easter Music (small section of Parsival.) Unbelievably beautiful and hopeful.

churchmusicmom · March 20, 2008, 10:11am

Yes, indeed. Fling 'em hard and fling 'em far!

You are a sample of ONE, the only ONE that matters, LTS.

Faline2 · March 20, 2008, 10:11am

late to school…I never liked the word cyberknife anyway. And you have one of the most beautiful whole brains gracing the world today…and you are resilient and surrounded by informed smart detail oriented people who will make sure you get every advantage that can be unearthed in your treatment. praying daily for the radiation to do you a world of good, and we fellow parents so appreciate you letting us know what you are facing.

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