Explaining the Extremely Rare Cancer That Killed 36-Year-Old YouTuber Melanie Ham

Most angiomyolipomas (AMLs) occur in the kidneys, but they can also occur in the liver, lungs, uterus, colon, skin, bone and adrenal glands.  Epithelioid AML (eAML) is a rare subtype that involves the proliferation of epithelioid cells.

In a statement announcing her passing, Ham's husband lovingly wrote, "It is with a heavy heart and deep sadness I share the news of the passing of my sweet, amazing, beautiful wife Melanie. Over the past few months things have been progressively getting worse and we're thankful that we made it to this point through the holidays and tried to make every moment count."

Ham's life ended just nine days short of the couple's 16-year anniversary. Her husband has been open about his grief, while still trying to find ways to hold on to the beauty and love of the person he lost: "Despite the deep grief my family and I feel today we want to celebrate an amazing woman and a life well-lived. She loved passionately, created beautifully, provided abundantly and was my best friend all the way to the end."

“She was an extraordinary woman and God has another beautiful angel,” her husband wrote. “She can now walk, and sing, and dance in a way her body did not allow over the last few months.”

In the 2020 blog post revealing her diagnosis, Ham wrote that her specific cancer was "very, very rare," and that it "behaves differently than a typical cancer which is why it was so unpredictable." In an update from October 2021, Ham shared that she underwent surgery to treat her disease. The operation was successful, but after just five weeks, she had developed other symptoms and a scan indicated that the cancer was spreading aggressively. That's when Ham went through a more intense round of chemotherapy, which caused her to lose her hair.

"We were of course hopeful that this chemo would work," she wrote, "But after a few rounds we scanned again and the chemo wasn't doing a darn thing all the cancer was still progressing. Another gut punch." She switched chemo drugs again, and she continued to fight the disease with everything she had until her passing. Heartbroken fans have flooded Instagram and YouTube comments sections with statements of grief and support.

How to Find Help After a Rare Cancer Diagnosis

Tens of thousands of people are diagnosed with rare types of cancer every year. People facing an uncommon diagnosis may find it difficult to find a doctor who specializes in their illness. SurvivorNet experts have specific guidance on ways that rare cancer patients can find helpful resources and take the initiative to get the help they need.

Here are some ways to find help:

Clinical Trials

Many SurvivorNet experts say that once they've exhausted all other options for treating their patients' cancer, or if they have a rare cancer, they'll recommend looking into clinical trials. How can you find active clinical trials that may be right for you? Check out clinicaltrials.gov.

Clinical trials may offer life-saving treatments for some people but they are also extremely important for scientific research.

This website is a database that the U.S. government maintains. It compiles privately and publicly funded clinical trials conducted around the world. It can be a particularly useful resource for cancer patients with rare conditions as a tool for finding doctors who are experts on their diseases.

Oftentimes, the most specialized doctors in a specific field end up leading clinical trials that push our understanding of diseases forward. If you know what the name of your disease is, you can search the disease name on clinicaltrials.gov and find the names of doctors leading these kinds of studies. This tool can help you identify the doctors who are best qualified to help you.

Academic Centers & Comprehensive Care Centers

For many cancer warriors, community oncology can be a great treatment resource. However, people with rare cancer might require specialized evaluation. Most of the time, the most effective place to find a specialist is at academic centers and comprehensive care centers.

A major benefit to seeking care at a comprehensive cancer center is that there will be a team approach to finding the best treatment.

"A comprehensive cancer center is a cancer center that has been essentially vetted by the National Cancer Institute, and provides outstanding clinical care in addition to basic and translational science and research," Dr. Ted Teknos, president at University Hospitals Seidman Cancer Center in Cleveland, Ohio, tells SurvivorNet.

Across the U.S., there are only about 50 accredited comprehensive cancer centers. There are also various cancer cancers.

What's the difference between the two, you might ask? Well, an NCI-designated cancer center means that a center has met NCI standards for cancer prevention, clinical services or research, but not all three. If a facility is an NCI-designated comprehensive cancer center, that means it meets NCI standards in all three categories.

Dr. Kenneth Miller, a clinical instructor at Mount Sinai, tells SurvivorNet about what differentiates a comprehensive cancer center from other treatment providers, like community medicine.

"Pretty much automatically, there's going to be a team approach (to your care)," Dr. Miller says. "Surgical oncology, medical oncology, radiation oncology and all the support services and also wonderful pathology and radiology." Dr. Miller explains that at a comprehensive cancer center, all of these different specialists work together to help you find the best treatment.

"We call it a tumor board a group to go through all the details of your case … so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well."

Learn more about SurvivorNet's rigorous medical review process.

---