DecisionDx-UM groups patients into high- and low-risk categories and is being used to better determine follow-up care. The test is now used as part of the standard of care in many ocular oncology centers.  To read the full article, click here.

The post PLOS Currents Confirms DecisionDx-UM Accuracy and Clinical Use appeared first on My Uveal Melanoma.

In up to 50% of uveal melanoma patients, the cancer may spread to the liver, where it is usually fatal. However, a new experimental treatment, meant to starve the liver tumor and help the body’s own immune system fight the cancer, may have the potential to impact survival.

To view Margot Kim’s full report on KFSN-TV, Fresno, CA, click here.

The post Experimental Treatment for Eye Cancer Patients appeared first on My Uveal Melanoma.

Dr. J. William Harbour

Dr. J. William Harbour is the ocular oncologist who developed DecisionDx-UM, the first and only validated prognostic test for uveal, or ocular, melanoma. The test predicts with a very high degree of accuracy which uveal tumors will likely spread–and thus ultimately prove fatal–and which will not, a valuable tool for guiding clinical treatment.

He has been the principal investigator on major research grants from the National Cancer Institute, National Eye Institute, Melanoma Research Foundation, Melanoma Research Alliance, Research to Prevent Blindness and other foundations. He founded the Collaborative Ocular Oncology Group that conducted the largest multi-center, prospective study ever performed to validate a molecular prognostic test in uveal melanoma. He also founded the Ocular Oncology Research Society and other collaborative initiatives in eye cancer treatment and research.

Dr. Harbour is currently Professor of Ophthalmology, Vice Chairman for Translational Research, and Director of the Ocular Oncology Service at the Bascom Palmer Eye Institute in Miami.

To read exchanges with patients or to ask your own questions about uveal melanoma or the prognostic test, visit Dr. Harbour’s page on the popular blog TalkAboutHealth.com.

The post Ask the Doctor: Dr. J. William Harbour appeared first on My Uveal Melanoma.

“I was so happy because cataracts are treatable.” Wife, mother of six, and grandmother of a seven-year-old-boy, Cheryl was eager to get back to her family and beloved job of running a local women’s gym. But before surgery, she learned that this wasn’t going to be simple—she didn’t have cataracts, she had a tumor.

After yet another doctor’s appointment, Cheryl was referred to Dr. William Harbour, who is an ocular oncologist and clinical researcher who was then at Washington University in St. Louis, not far from her home in southern Illinois.

Cheryl and her supportive clients and friends

“I had all kinds of tests…an ultrasound, a liver enzyme test, a bunch of photos taken of the inside of my eye, and a CT and MRI scan. This went on for eight or nine hours. Then Dr. Harbour said my tumor was huge, and that radiation was not an option. My eye had to come out and the surgery had to be done soon.” Cheryl was devastated.

Dr. Harbour explained there was a test that could tell Cheryl her risk of metastasis, that is, the odds that her cancer would spread. Like many others, she said yes. She wanted to know her tumor type.

“I was sure it was coming back as Class 1,” with a low risk of spreading. “I just wanted that confirmation.” Cheryl was wrong. When Dr. Harbour called with the results, she learned her tumor was Class 2, with a 72% chance of eventually metastasizing to her liver.

“I shut down, I couldn’t speak. I was totally down,” she says. “I made myself sick with depression. I could barely make it to the kitchen sink without being out of breath.”

“It took me about four to five months to say ‘stop it.’ I got back to work and back to my normal life. Since then, my life has taken a total turn.”

“I’ve been spending more time with my family—my husband, my kids, my grandson, even my extended family.  It has brought us all closer together.  And I have a really strong support system at work. The women at my gym have been with me the whole way.”

Cheryl believes that another major positive is the aggressive monitoring and follow-up her Class 2 status requires. She must go for either an MRI or liver function test every three months.  She’s not so sure she would get—or push for—this level of scrutiny without her Class 2 prognosis, or that her insurance would cover it. She’s hopeful that as soon as any metastasis is detected, early treatment will be able to prolong her life.

“I am grateful to know,” says Cheryl.  “If I had to make the decision again, I’d take the test.”

The post For Cheryl, Knowing Her Tumor Type was a “Blessing” appeared first on My Uveal Melanoma.

Mary’s doctor said radiation was the best treatment option in her case. He explained he’d like to perform a test to assess the likelihood for metastasis—that is, that her tumor had already spread. It required a fine needle aspirate biopsy, a quick procedure in which he’d remove a tiny sample of her tumor with a very thin needle before sending it to a lab for processing.

“I remember my dad was scared for me to have the surgery and especially the biopsy. He has eye problems too and thought it might actually cause the cancer to spread.”

Mary and her daughter relax at home

In fact, thousands of biopsy procedures are performed safely every year in many cancers, including uveal melanoma. After talking it over with her doctor, Mary decided to go forward with the test despite her family’s misgivings.

“I made a decision that this was my cancer. And I wanted to know my risk.”

Shortly after, Mary scheduled her biopsy and surgery. As a neonatal nurse practitioner and single mother of a twelve-year-old autistic child, she is used to the role of caregiver. But eye cancer temporarily changed that.

“My boyfriend and dad were right there when I came out of surgery.  My parents live in Alabama, and I stayed with them while I was recovering. And my boyfriend—he has been so supportive throughout all of this.”

Much to her relief, Mary’s tumor was Class 1A meaning there is only a 2% chance that the cancer will spread within the next five years. “I’ve had to come to terms with the fact that I had cancer, but I’m so grateful for a good prognosis. I’m so glad I know.”

Mary now requires some level of monitoring because of cysts in her liver, but she is back to work and enjoying life. “My job taking care of these tiny babies is very rewarding. I’m exactly where I need to be.”

The post Taking Matters Into Her Own Hands appeared first on My Uveal Melanoma.

Patients told CBS that it was valuable to know their odds of survival for a variety of reasons, including life-planning purposes and peace of mind. Dr. Scott Gaines, a Class II patient himself, says knowing his prognosis has changed how he’s living his life.

“I like to savor moments, savor things, smell, teach my boys to smell, remember this. Get all your senses into it,” Dr. Gaines told CBS. “Would I have done that if I was a Class I? I don’t know.”

The post Front and Center on CBS News: Advances in Genomic Testing appeared first on My Uveal Melanoma.

And Peter almost didn’t know. Dissatisfied that he wasn’t given information about treatment options or prognostic tests when he was diagnosed, Peter dug further for information online. He quickly learned about Dr. Harbour and his gene expression profile test, and that it had to be done before the radiation, since it can alter the tissue and render any results meaningless.

“Work, dreams, relationships, access to experimental treatment, and prioritizing my bucket list… for me, they all depended on that test result, so the stakes were high.”

Peter L. wasn’t given the information, and almost missed his chance to be tested.

Just two days before the procedure, Peter flew halfway across the country to see Dr. Harbour and have a biopsy. “Even if it was worst case scenario,” he says, “I wanted to know so I could get my life in order.”

For Peter, 56, this was a very difficult time. His business selling antique magazines and newspapers required constant reading to identify condition and content of the material for his clients. He had already been dealing with loss of vision in his left eye when he learned of the midsize tumor in his right eye—leaving only 25% of his vision intact.

Four weeks later the test results were in. Peter’s tumor was Class 1B, which meant his cancer had about a 21% chance of spreading. Knowing his Class helped Peter and his hematology oncologist plan an appropriate monitoring schedule to detect any metastasis as early as possible with the hope that prompt treatment could possibly extend survival. As well, prognostic test results would be necessary for eligibility in any future clinical trials.

Today, Peter is a tireless advocate for patients with uveal melanoma to also become knowledgeable about their disease and get tested. He’s active in online chat rooms, forums, and social networking sites educating people about their options. Peter says he doesn’t want anyone to be “too late and live with the stress of uncertainty the rest of their life.”

Now that he is better able to predict his survival and especially because he needed to deal with his vision loss, Peter decided to liquidate his current business in New Hampshire and return to his native Netherlands to be with his supportive family and friends. There, he will have better access to advanced public transportation and special tools and assistance for blind and low vision people. He has just finished up a course in molecular biology—again to arm himself further in his battle against cancer.

The post The Test of Time appeared first on My Uveal Melanoma.

“It’s a scary, world-stopping thing when you’re told you have eye cancer, and you need to do aggressive treatment to have more time. Pretty awful.”

With the support of his loving wife Cindy, Jerry, 73, knew he had to go ahead with radiation treatment of the tumor. But there was one more thing to consider.

Jerry’s doctor asked if he wanted a prognostic test that would spell out his odds of survival and the chances that the cancer would eventually metastasize. It required removing a tiny sample of his tumor with a slender needle minutes before the radiation. Jerry said yes.

Jerry and Cindy at home in Muir, Michigan

While waiting for the results for the laboratory test to come back, said Cindy, “We began getting our ducks in a row. We started doing all the things we had been putting off. ”

Today, Jerry may not recall how big his tumor had been (“do you think I can remember that?”) but he’ll never forget his doctor’s words on that fateful Sunday morning when he got the call with his prognosis. “I have good news for you, Jerry. There’s a 98-99% chance your cancer will not spread.”

Thanks to his test results, Jerry has been able to resume a worry-free retirement, enjoying his wife, children, grandchildren, and…yes, great grandchildren.

“We look at the whole thing as a blessing now,” said Cindy. “People rallied around. We found out we have a lot of faithful friends and church members and very caring people that came into our life who we knew were there but didn’t fully appreciate until Jerry’s diagnosis.”

“Even if the result had been negative, I’d have wanted to know…” Jerry explained, “…though I’m happy it’s a good one.”

The post A Second Chance for Jerry appeared first on My Uveal Melanoma.

He sent her to Washington University in St. Louis, a three-hour drive from her sparsely furnished apartment in the working-class town of Sedalia, Mo.

And there, Ms. Caton, mother of a 2-year-old daughter, wife of a chicken factory worker, got almost incomprehensibly bad news. The growth was cancer, a melanoma, and it was so huge it filled her eyeball.

“Am I going to die?” Ms. Caton asked. “Is my baby going to have a mommy in five years?”

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