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!

Researchers at Harvard Medical School say the active component of marijuana may enhance the virus that causes a rare type of skin cancer called Kaposi's sarcoma. While most people are not at risk of developing this cancer, AIDS patients are transplant recipients are. It's the weakened immune system that puts some at risk for this disease. And these are the people who should discuss with their doctors the costs of using marijuana medicinally or recreationally.

It may take only small doses of tetrahydrocannabinol (THC) -- the ingredient that gives marijuana users a "high" -- to cause cells to become infected and then multiply, according to a study reported in the August 1 issue of Cancer Research.

Previous studies have indicated this very same association between marijuana use and Kaposi's sarcoma. But this study shows THC itself is the driving force.

Overview of osteosarcoma:

There are about 900 new cases of osteosarcoma diagnosed in the US each year. About 400 occur in children and adolescents younger than 20 years of age.

Osteosarcoma forms in the bones. It is most commonly diagnosed in those who are 15 to 25 years of age. It is also the most common type of bone cancer, and the sixth most common type of cancer in children.

Other types of cancer can eventually metastasize to the bone, however this disease originates in the bone and can spread elsewhere to other parts of the body.

Many cases of osteosarcoma, around 80 percent, begin in or around the knee area.

What are the risks of osteosarcoma?

The disease is most seen in boys and can arise from unpredictable errors in the DNA of growing bone cells during times of intense bone growth. Currently, there is no effective way to prevent this type of cancer but with proper treatment most kids diagnosed with osteosarcoma do recover.

My husband and I have a friend who was recently diagnosed with a sarcoma. I don't have more specific details about what kind of cancer it is, except that he went to the emergency room with groin pain and the doctors found a mass. Our friend is being treated at the Mayo Clinic, but he and his wife return on weekends, and we have dinners with our large extended family of friends, all together, every Friday night. We have been having these Friday night dinners for years now. We call them Friday Night Literary Society as many of the friends teach in the English department at the local university, or used to, as I did.

The point of these dinners, though, is to have fun. It is not to mention cancer, treatment, or anything else. Our friend doesn't want to talk about it, doesn't need the reminder. I'm sure it's never far from his thoughts. I sat next to his wife tonight, and she talked about how well he was responding to treatments, how he wasn't nauseaus from the chemo. The doctors say he will need surgery in August, and will probably have to have his right leg amputated. It's stark and horrible, and we are all affected by it.

Because we are a tight-knit bunch, we all talked among ourselves because we didn't want to ask the family too many questions, didn't know what they needed from us. We all wanted details, but we didn't know how to get them. The family wanted us to know details, but didn't really want to contact everyone individually. Fortunately, or unfortunately, we are a group who has known tragedy. Another friend died of cancer a few years ago. Yet another was covered yesterday in the Survivor Spotlight. There are more. So, the solution to the communication problem is this: Select a point man. Select one person who is responsible for updating everyone else on what is going on.

Think about this:

A sarcoma is a cancer of the connective or supportive tissue and soft tissue affecting the bones, cartilage, fat, muscle, and blood vessels. Osteogenic sarcoma or osteosarcoma is one of the most common childhood bone cancers. Soft tissue sarcomas are more common in adults than in children. In all, sarcomas constitute fewer than 1 percent of all cancers. Its treatment is made more difficult with the existence of more than 70 varieties.

New studies released by the Journal of the National Cancer Institute showed that children who survive cancers have an increased risk of developing a secondary sarcoma,compared with the general population. Tara Henderson, M.D., of the University of Chicago Department of Pediatrics, and colleagues examined the incidence of secondary sarcomas and the risk factors associated with that risk among the 14,372 participants in the Childhood Cancer Survivor Study. Overall, there were 751 second cancers diagnosed among the participants, 108 of which were secondary sarcomas such as soft tissue sarcoma, malignant peripheral nerve sheath tumors, and osteosarcoma. These sarcomas were diagnosed an average of 11 years after patients were diagnosed with their primary cancer.

I read a two articles about treatments for recurrence of rhabdomyosarcoma recently. I first got interested in this childhood and young adult cancer when I read Karen's blog. Karen was diagnosed as a young adult and wants to raise awareness for this rare cancer, sometimes just called rhabdo, that does not have a great survival rate. I did a post about her and her cancer journey that you can read called Raising awareness about rhabdomyosarcoma.

This brings me to the two articles that I recently read about treatments for recurrent rhabdomyosarcoma:

A Phase II clinical trial was published in the Journal of Clinical Oncology. The drug Camptosar (irinotecan) reduced or eliminated detectable cancer in 11 percent of the children who had relapsed rhabdomyosarcoma. The study states that patients with recurrent disease have a very poor prognosis. Eleven percent, (four out of thirty five patients), does not seem like a very high success rate however, these trials are needed to find treatments to improve survival for this deadly cancer.

The other article I read was also published in the Journal of Clinical Oncology. It states that treatment with the chemotherapy drug combination of Camptosar (irinotecan) and vincristine reduced or eliminated detectable cancer in 70 percent of children with metastatic rhabdomyosarcoma. It stated that treatment alone with Camptosar is not good enough. The combination of Camptosar and vincristine, 70 percent of children experienced a partial or complete disappearance of detectable cancer. This is better news!

You can read more about rhabdomyosarcoma in the post called Cancer by the Numbers: Rhabdomyosarcoma.

Rhabdomyosarcoma is a type of soft tissue cancer that is most often found in children. This cancer will usually present itself as a noticeable lump. Since this is a cancer made up of cells that normally develop into skeletal muscles, the lump can appear in different locations of the body. Although most of our skeletal muscles are in our limbs and truck, it is usually found elsewhere.

The most common sites that rhabdomyosarcoma tumors are found:

• Head and Neck (30%-40%)
• Urinary and Reproductive Organs (20%-25%)
• Arms and Legs (18%-20%)
• Truck (7%)

There are two main types of rhabdomyosarcomas that occur in children, embryonal rhabdomyosarcoma and alveolar rhabdomyosarcoma. The embryonal type (ERMS) is the most common type and usually occurs in infants and young children. The alveolar type (ARMS) usually effects older children and teenagers. Embryonal has a better prognosis than alveolar, which is a more aggressive tumor type.

About 3 percent of childhood cancers are diagnosed as rhabdomyosarcoma. In the United States about 350 new cases arise each year. It is the most common type of sarcoma occurring in the soft tissues, which is tissue that lies between the skin and the bone. It is the sixth most common cancer in children.

The researchers say there are no known environmental risk factors that cause rhabdomyosarcoma. There are some inherited conditions that can increase the risk of developing rhabdomyosarcoma but these are only a small fraction of those diagnosed. L-Fraumeni syndrome, Beckwith-Wiedemann syndrome, neurofibromatosis and Costello syndrome are inherited conditions that are known to lead to different forms of cancer. This information gives the researchers of this disease some key knowledge in understanding the disease and points them in the direction of a genetic cause for this type of cancer.

In July I had written a post titled Raising awareness about alveolar rhabdomyosarcoma, about a young adult named Karin who was diagnosed with the disease in December of 2001. Karin created a blog to raise awareness for alveolar rhabdomyosarcoma. She continues to raise awareness and now she is setting her goal even higher, to raise money to research the disease.

In October of this year Karin Isabelle Dubois founded Fit2cure. It is a non-profit organization selling stylish products and apparel. The Fit2cure team is currently in its product development phase for their online store. Karin is realizing how hard it can be to get all this going, however with the help of her family and friends the Fit2cure products will hopefully be available soon.

Save the link in your favorites and check back later to order some of Karin's merchandise to support rhabdomyosarcoma research!

Karin was diagnosed with alveolar rhabdomyosarcoma when she was 20 years old. She felt a lump in her breast in December of 2001. The biopsy showed a malignancy but it was negative for breast cancer. At first they thought this must be the result of metastasis since alveolar rhabdomyosarcoma rarely shows up in the breast as the primary tumor. After all the scans and painful bone marrow biopsy Karin was told that she had a localized tumor.

This was great news but Karin still had to endure surgery, chemotherapy and radiation. Karin created her blog to raise awareness about alveolar rhabdomyosarcoma. Karin struggles to find stories of hope for survivors of this disease. She feels hope is very important.

I check Karin's blog regularly and right now she is having what I hope is just a scare. Something showed up on her recent CT scan. It's really small and might be nothing at all. Right now they are doing the wait and see approach and she will have more tests in the coming weeks.

Brendan Borek High Tides Memorial Fund provides assistance to residents of Cape May County, New Jersey who have a child or young adult with cancer. Brendan was diagnosed with Ewing's Sarcoma and lost his battle in December of 1991. Brendan was a surfer and his friends wished him high tides during his cancer battle since the high tides at the Jersey shore would bring the best surfing conditions.

The memorial fund brings high tides conditions to those who need it in the Cape May area. Services provided include professional counseling and advocacy programs to financial and material assistance.

On August 15, 2006 the Avalon Yacht club is hosting The Local Artist and Friends Art Show. All ticket proceeds and fifty percent of all artwork sold benefits Brendan's fund.

Thanks to Chris Twonley for the tip and for donating some of her amazing paintings to the show!

Osteosarcoma begins in the bones. It is the most common type of bone cancer tumor in the group of bone cancers called osteogenic sarcomas. It affects 5 percent of all teens diagnosed with cancer. Symptoms usually include pain or swelling in the legs or arms.

Tina blogs about her daughter Kristina Rose. Kristina's website caught my eye one day because we share the same name. I wanted to read about her story. I have since then been in contact with Kristina's mom Tina. She is an amazing mom who lives with the fear of Kristina's cancer returning. Kristina is doing wonderful and is now over a two year survivor!

The Relay for Life is something that is very important to Tina. She wants to make sure that a cure is found! You can go to the American Cancer Society website to find more information about the Relay for Life or go here to find information about the Relay of Life that Kristina and her mom will be involved in.

On March 29th, 2004 Kristina was diagnosed with Osteosarcoma. She was only 11 years old. She is a beautiful young woman now, as you can see! Tina might not have too much to blog about these days except that Kristina is being a normal teenager and spending lots of time on the phone. This I love to hear!