H.E.A.R.D. stands for Hemangioedothelioma, Epithelioid Hemangioendothelioma (EHE), And Related vascular Disorders.

It is a support group established in 2004 to help these rare diseases. Hemangioendothelioma (HE) is the name for a composite group of vascular cancers, which can involve soft tissue, bone, skin, liver, lymph nodes and/or the lungs.

Due to the rarity of Hemangioendothelioma, it is preferable for patients to seek a sarcoma specialist for treatment.

There are only about twenty cases diagnosed each year of HE. The H.E.A.R.D support group has been able to locate about 120 people around the world who have this disease.

The members of this unique group tell us on the website:

Together, our voices will be HEARD!

Cancer drug Gleevec, used for the treatment of chronic myeloid leukemia (CML), has been pulled out of another round of testing so it can get to work stopping the return of a rare stomach cancer. It's that good, according to findings announced on Thursday.

The promise of Gleevec should make it standard treatment for people with gastrointestinal stromal tumors (GIST), a stomach and intestine cancer diagnosed in 5,000 to 6,000 Americans each year.

The drug has already been used for patients whose disease is too advanced for surgery. Now it will be used for those whose tumors can be removed. The drug will be administered for at least one year post-surgery.

More than 600 people participated in this Gleevec trial. Each person took either Gleevec or a sugar pill for one year after surgery. After the one-year mark, cancer returned in 17 percent of people taking the sugar pill and in 3 percent of people taking the actual drug.

Since 50 to 90 percent of GIST cases recur over time, this is great news, say researchers who call Gleevec a highly targeted cancer drug with few side effects.

It's already been established that type 2 diabetes increases the risk of pancreatic cancer. And now, research indicates there is also a link between type 1 diabetes and this type of cancer.

The risk is relatively small -- but still, those with type 1 diabetes have a likelihood of developing pancreatic cancer that is twice as high as in non-diabetics. This is similar to the risk those with type 2 diabetes face.

There are many theories about the link between diabetes and pancreatic cancer, and this research -- published in the British Journal of Cancer -- helps narrow the scope of the theories.

For example, one researcher says the study rules out "a cancer-inducing role of the insulin-producing beta-cells in the pancreas, because in type 1 diabetes these cells have largely or entirely been destroyed."

Experts say people with diabetes should focus their attention on the most common complications of diabetes such as heart disease, eye disease, and kidney disease and not on the very small risk of cancer. In the whole scheme of things, pancreatic cancer is a rare disease -- and even twice the risk is not very significant.

They are called DES daughters, and they are the women who mothers took the anti-miscarriage hormone drug DES during pregnancy. It is estimated that millions of pregnant women were given this drug between the 1940s and 1960s, and it's now been determined that the daughters born to these women have not only an increased risk of a rare vaginal cancer but also nearly double the chance of developing breast cancer.

This sad finding has been addressed before but now more than ever, DES daughters are urged to stick to a strict breast cancer screening schedule.

A news brief published in the February 2007 issue of Good Housekeeping boldly reminds all women to comply with government guidelines that call for mammograms for all women every one to two years starting at age 40 and every year after the age of 50. But it's a different story for women exposed in utero to DES.

"If you were exposed to DES, be sure to let your doctor know and have a mammogram ever year, even in your 40s," says Julie Palmer, lead researcher of the DES study.

Canadian researcher Evangelos Michelakis, associate professor of medicine at the University of Alberta in Edmonton, has stumbled upon something quite remarkable -- a potentially new anti-cancer agent called dichloroacetate, or DCA.

DCA is nothing new -- it's long been used for treatment of rare metabolic disorders -- but using it to fight cancer puts an entirely new spin on the potential of this drug.

"This is one of the most exciting results I've ever had," Michelakis said. "But I can't be overenthusiastic until it works on a human."

Michelakis and his colleagues have successfully used DCA to shrink human lung, breast, and brain tumors in both lab rats and test tubes. And while this type of research may not ordinarily generate a lot of excitement, this specific study is creating a buzz because DCA has been safely used in humans for decades, without adverse side effects.

"One of the big concerns about drugs is that they can harm people but we already know this drug is safe," Michelakis says. "It doesn't even affect normal cells."

One of the fundamental premises of cancer biology is that mitochondria -- the energy producing units of cells -- are permanently damaged by cancer. What DCA does is revive the mitochondrial function, encouraging the death of cancer cells.

The overwhelming hope is that DCA will move right to human testing. But the overwhelming fear is that it will not -- because of economic reasons. There is no longer a patent on DCA so it is not owned by any one company. With little chance of one group making a large profit, there may be no incentive for pharmaceutical companies to invest in research.

Sadly, this drug -- that appears to work remarkably well -- may never benefit cancer patients. All because no one stands to make billions of dollars from it.

Little Layla Schilling is just two-and-a-half years old -- and for more than one year of her short life, she has been fighting a rare liver cancer that spread to her lungs. But a series of medical interventions has worked miracles -- and Layla now gets to leave the hospital and head for home, where a belated Christmas gift from Santa awaits her -- a trampoline.

When Layla's cancer was first discovered, doctors at Royal Children's Hospital in Australia immediately removed 80 percent of her liver to stop the tumor growth. Several months later, cancerous spots appeared again in her liver -- and in her lungs too.

Five months of intensive chemotherapy did its job -- and Layla's mom, Sara Wright, says her daughter is now doing well.

"The chemotherapy has successfully shrunk the tumors in her lung and what was left was removed by surgery," she said. "The tumor in her liver is under control, but the only way to be sure it doesn't come back is to have a transplant."

While a transplant is in Layla's future, she is focused right now on the moment. As every child should be.

My new breast cancer friend recently sat through her second infusion of Adriamycin and Cytoxan -- the long-time traditional chemotherapy combination for breast cancer -- and all the while, listened to another breast cancer survivor share her thoughts on these two drugs.

This woman told my friend she opted to stray from these chemotherapy agents because of their toxic side effects, because of their combined potential for causing other cancers, like leukemia. She instead took another drug route and was happy for her decision. My friend, however, was scared.

My friend returned home from her treatment and found herself reading a Cancer Blog post reporting that Adriamycin and Cytoxan may no longer be the gold standard treatment for breast cancer, that Taxotere and Cytoxan may become the preferred, safer option.

Fear and panic set in, and my friend e-mailed me, in search of perspective from a recipient of the drugs she was starting to believe are both ineffective and cancer-causing.

I am not a doctor. I am not an expert. I am not qualified in any way to represent the facts about medical research. But I am surviving breast cancer. And I did spend eight difficult weeks under the influence of Adriamycin and Cytoxan, given every two weeks in a dose-dense fashion. So I have an opinion about these drugs -- and about most things breast cancer related.

I shared my opinion with my friend, who has since decided to proceed with her prescribed treatment plan. I told her that in rare cases, chemotherapy can cause a second cancer, like leukemia. But this is not common, and the unlikely risk does not outweigh the benefit of receiving chemotherapy to address the cancer at hand.

I also shared with my friend that we can only benefit from therapies that are available and effective at the time of our treatment. Studies prove that Adriamycin and Cytoxan work -- that's why so many women are treated with this accepted method. Drugs in the research pipeline may one day definitively replace what is available today. But we must be OK with what we receive -- because we have no control over what lies ahead. We must live in the here and now -- with the knowledge that should our cancers return, bigger and better options may await us.

Consider Herceptin. Once not even an option for women with aggressive HER2 positive breast cancer, this targeted drug may be the magic bullet in an attack against this disease. I received Herceptin. My friend will receive Herceptin. Timing was on our side for this medical breakthrough.

Timing may not have been on our side should a new gold-standard drug treatment emerge and replace Adriamycin and Cytoxan. But we can still trust these two drugs will do their jobs, will prevent a recurrence of a disease that is so much more treatable today than it was years ago. Lucky for us.

A decade of research specific to the inherited form of pancreatic cancer has turned up a gene that could lead to earlier diagnosis and treatment for one of the deadliest forms of cancer.

The magical gene -- called palladin -- was discovered at the University of Washington after the extensive study of one family that has lost nine members over four generations to pancreatic cancer and has nine additional members with early signs of the disease.

Washington resident Ryan Chappell, a member of this family who had his pancreas removed just before cancer could strike, is very excited about this breakthrough.

"I feel really good that my family has not suffered (in vain)," the 21-year-old says. "Something has been accomplished from their contribution."

What the Chappell family has contributed to research is an understanding of a breakdown in a gene that makes a protein for the skeleton of pancreas cells. In this one family, the gene was mutated and produced large amounts of a misshapen protein that rolls like tumbleweed through the body, migrating 50 percent faster than other cells.

Scientists hope to translate their research findings into a diagnostic test to find excess amounts of the protein and to prevent the cancer cells from moving.

For now, early detection of pancreatic cancer rare because the pancreas is deep in the body, making it difficult to feel or see tumors through imaging tests. Symptoms -- like jaundice, abdominal and back pain, and digestive problems -- usually surface only after the cancer has spread.

Cancer of the pancreas is rare but is the third-leading cause of cancer death among people age 40 to 60.

Ronnie Lippin, long-time publicist and manager who helped shape the careers of rock stars Eric Clapton, Brian Wilson, and Prince, died Monday from a rare form of breast cancer. She was 59 years old.

Lippin began her career in the New York film and stage industry and migrated to music when she moved to Los Angeles with her husband, Dick Lippin. She worked for MCA Records, with Elton John's Rocket Records, and with RSO Records -- home of the Bee Gees and the Grease and Saturday Night Fever soundtracks -- where she became a top publicist. In 1989, she joined the marketing and public relations Lippin Group, founded by her husband. At the time of her death, she was president of the Lippin Group.

Lippin is survived by her husband and a daughter, who also works for the Lippin Group.

The lung cancer drug Gefitinib has been taken off shelves in the United States due to ineffectiveness. But it remains effective in some Taiwanese lung cancer patients, according to a study published in the journal Lung Cancer.

The study, conducted by the National Health Research Institutes, involved 65 non-small-cell lung cancer patients and found that more than 50 percent of participants responded to the drug therapy -- while only 10 percent respond in Western studies.

A genetic mutation of the epidermal growth factor receptor (EGFR) was found in most patients who responded to Gefitinib. The mutation is rare in Western countries but much more common in East Asian countries where the mutation increases the likelihood of developing adenocarcinoma.

About 6,800 Taiwanese patients develop non-small-cell lung cancer every year. Of these, 65 percent of cases are adenocarcinoma. Of this group, 57 percent will have the genetic mutation. And roughly half will respond to Gefitinib.

Heartburn has never really been considered a major health concern. It has been considered uncomfortable and annoying and troublesome -- yet still only a harmless nuisance. In recent studies, though -- summed up in the September 2006 Oprah magazine -- heartburn has been linked to a deadly form of esophageal cancer. Apparently, people who experience heartburn one time per week or more have a fivefold or greater risk of adenocarcinoma of the esophagus -- a cancer with incidences jumping as much as 500 percent over the past 40 years. Experts insist, however, that adenocarcinoma is still rare. One doctor states that 40 percent of Americans have heartburn once per month -- yet only 8,000 to 9,000 people develop this specific cancer each year.

For the unfortunate few who do go on to contract cancer, there is hope in a surgical procedure to remove the cancer and part or all of the esophagus and nearby lymph nodes -- which can dramatically increase the odds for survival. For most of us, a bit of heartburn does not signal an eventual cancer diagnosis. It just means we might need to self-treat the symptoms with over-the-counter remedies. And a recent review at Stanford suggests that sleeping with your head elevated can reduce reflux pain.

You should see a doctor if your heartburn results in a consistent burning sensation, difficulty swallowing, or vomiting.

Lynne began her blog on August 6 -- one week ago and two months after she endured surgery to clear a clogged bile duct and received the grim and frightening diagnosis of gallbladder cancer. Her cancer is stage IV -- not an uncommon staging for a hard-to-detect disease that many will only survive for two to six months. So Lynne is scared but still strong and hopeful and full of faith. Her goal is to live -- not die -- with cancer, even though her days may be numbered. So Lynne blogs her thoughts and fears and all the bits and pieces of information she gathers about a disease that is rare and resources that are scare. It helps her. And it will surely help others. And here is a glimpse into what she shared in her first post.

If you had only six months or a year to live, would you want to know? What would you do with the information? Would it make a difference in how you lived your life? These are questions I have been asking for the past two months. In asking them, I have also noticed how little guidance there is for this process. Who have I known personally who was able to anticipate their death? I can think of only two individuals, and I never asked them whether or not they were living differently in their awareness of their mortality.

So, those are the themes in this blog. I look forward to a dialog with those I know, and those I don't about this strange, life changing journey.

To Lynne -- and to all others who are faced with the disease -- may you find peace and comfort and strength in every step you take, every direction you follow, every path that becomes your road to recovery.

A reader left a comment the other day on the Cancer Blog post death by cancer dims outlook of promise, hope, survival. It was positive and supportive and inspiring -- and sad too. The reader shared that her mother passed away in February after a year-long battle with gallbladder cancer. She wrote that her mother handled her diagnosis, chemotherapy, transfusions, medications -- and her final days -- with true grace. And this is a big deal. Because there is not much information floating around on the topic of this cancer. So this woman didn't have much to cling to. Like I do. As a breast cancer survivor, I have mounds of resources at my disposal. I have books and magazines and websites and blogs that devote generous coverage to breast cancer. There are walks and runs and yard sales and fashion shows and other fundraisers that make breast cancer survivors the lucky recipients of extensive research and study. I see pink ribbons all over town and license plates on the roads and clothing and hats and even tennis shoes that promote breast cancer awareness. I could go on -- and on and on.

Gallbladder cancer is rare. So perhaps that's why there is not an abundance of information on the disease that has no known cause or test to detect its presence in the body. The American Cancer Society estimates that about 8,750 new cases of gallbladder cancer and bile duct cancer (excluding bile ducts within the liver) will be diagnosed in 2006 in the United States. And about 3,260 people will die of these cancers in 2006. Of these new cases and deaths, about half are due to gallbladder cancer, which affects predominantly women and those who are older than 65. Diagnosis of this cancer is difficult because symptoms do not often surface until the late stages when aggressive treatment becomes necessary. Surgery, chemotherapy, and radiation therapy are typical treatment tools, along with palliative therapy to help control or reduce symptoms. There are also drugs currently under study in the areas of both targeted therapy and immunotherapy.

It's good to know that gallbladder cancer is rare -- and that it takes far fewer lives than breast cancer and other diseases -- but for the unfortunate ones who are diagnosed with this life-threatening illness, the lack of information and resources is a truly an unfortunate side effect.

Four-time Iditarod champion Susan Butcher died Saturday of complications from a recent bone marrow transplant. Her health concerns began three years ago when she was diagnosed with polycythemia vera -- a rare disease that causes bone marrow to produce excess blood. Then last winter, she was diagnosed with leukemia. Her subsequent bone marrow transplant on May 16 cleared her system of cancer. But she developed graft-versus-host disease -- where transplanted cells start attacking the digestive system. A fever, a change in her potassium level, and a trip to intensive care prompted her husband to write on his blog Friday of her condition. He reported that if she remained stable, she would return to her previous hospital room and would work on recovering. But sadly, Butcher did not recover.

Butcher dominated the 1,100-mile sled-dog race from Anchorage to Nome in the late 1980s and brought national attention to the grueling competition. She won the 1986 race and became the second female champion -- and then won again in 1987, 1988, and 1990. She finished in the top four through 1993. Butcher also made headlines in 1979 when she helped drive the first sled-dog team to the 20,320-foot summit of Mount McKinley -- the highest peak in North America.

Butcher, who ran her last Iditarod in 1994, grew up in Cambridge, Massachusetts and was married with two daughters -- ages 10 and five. Butcher was 51 years old.

As of today, cancer patients in Britain have a new drug Sutent (sunitinib) available to them in the treatment for advanced kidney cancer and GIST, a rare gastrointestinal cancer. Sutent might become available in the future in the treatment of breast, lung and pancreatic cancers.

Called a smart drug, it offers a two-pronged approach in starving tumors of nutrients and shutting down the signaling of an enzyme that tells cancer cells to multiply.

There is some discussion that because of the cost of the drug, $4,500 a month per patient, the National Health Service (NHS) is planning to limit its availability. Sutent will be prescribed after other more traditional cancer drugs and treatment have failed for kidney and gastrointestinal cancer patients.