Chordopills an syringema is a rare type of bone cancer that forms in the skull or the bones of the spine.

The tumors develop from tissue called the notochord, a structure in an embryo that is important in the development of the spine. These leftover cells in the skull or spine can change over time and become cancerous.

Everyone has notochordal remnants, but only one person in a million is diagnosed with chordoma each year. Approximately one in 125,000 people are living with chordoma at any given time.

In most cases, the main treatment for chordoma is surgery, but radiation therapy may also be used. Even after treatment, chordomas tend to return in the same location. Certain drug therapies may slow or temporarily stop the progression of the disease.

Although many patients can live for a decade or more and some may be cured, the average survival is seven to nine years.

Scientists need tissue from chordoma patients because the condition is so rare. For patients planning to have surgery, they can participate in the Tumor Donation Program and contribute tissue for research.

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A Brief History of Melanoma

skin cancer preventionI thought melanoma was a recent invention, but not so. The first recorded descriptions of the dark tumor (melas oma) are found in the writing of Hippocrates in the 5th century B.C. The earliest physical evidence comes from the skeletons of Pre-Columbian mummies estimated to be at least 2,400 years old.

Physicians learned that melanomas often originated in moles but knew little about how cancers grow and spread. The only treatment in the early days was to cut or burn off the mole and hope for the best.

In the last decade, researchers have discovered the relationship between cancer cells and the immune system. This opened the door to new treatment options for melanoma.

Scientists also discovered “driver mutations,” changes that occur in tumors and fuel the growth and spread of cancer cells. These mutations, which occur in more than half of all melanoma patients, can now be targeted with agents that either turn off or block their activity.

In the past, the only treatment after surgery (adjuvant therapy) that improved survival was interferon, an agent that boosts the overall immune response.

The immunotherapy ipilimumab has been used as a treatment for metastatic melanoma since 2011. It unblocks or takes the brakes off the immune system by targeting the CTLA-4 component that helps turn off the immune system.

Current targeted therapies can inhibit the BRAF gene. Since there are multiple variations of the BRAF mutation, doctors continue to seek more precise and individualized treatments for these mutations. Another targeted therapy is one that inhibits MEK, a protein involved in cancer growth. KIT is another gene that sometimes mutates in certain types of melanoma.

Bottom line: Cancer treatment is rapidly advancing in its success and survival rates. With so much improvement in this decade, who knows what the next decade will reveal?

Stand Up to Cancer

An organization called Stand Up to Cancer funds and develops the newest and most promising cancer treatments. It informs cancer patients of clinical trials for which they may qualify.

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Clinical trials are conducted all over the world and with different types of treatments, including chemotherapy, targeted therapy, cancer vaccines, immunotherapy, epigenetics, and combination treatments. When a drug shows promise, clinical trials must be performed to discover its effectiveness. Ultimately, the FDA approves drugs only after rigorous testing.

A cancer patient who participates in a clinical trial will never get a placebo but some form of effective drug. Patients are rigorously monitored by oncologists through a variety of tests. A committee called the Institutional Review Board protects the interests of patients who participate in the trial. This board operates independently of the organization which is funding the study. IRBs do many things, but a main focus of their work is to protect the rights and welfare of participants. If they have any questions or concerns about a patient’s safety, they can mandate changes to how the study is designed.

I was eager to participate in a trial my oncologist was heading. It involved three different immunology drugs. The goal was to discover whether the drugs working together would be more effective than any of them working alone. In my case, the doctors discovered through extensive testing (every dang week) that the drugs had affected my liver and sodium levels. I was dropped from the study. Ironically, my oncologist, who was directing the study, has no access to those test results. Patients aren’t matched to specific tests in order to maintain patient privacy.

My brother-in-law in the 80s participated in a trial for the drug interleukin-2 which is now used for treatment. His melanoma disappeared, and he was cancer free for twenty years. Unfortunately, the other participants died. A clinical trial does not guarantee total eradication of the disease or even that the drugs used will be effective since the drugs are in the experimental stages of development.

If you’re interested in knowing more about clinical trials, check out