Genetic Soup for the Soul

My April blog, "A Fishy Situation," described my first eye appointment with Dr. Seddon, a vitreoretinal specialist and Director of Ophthalmic Epidemiology & Genetics Service at Tufts New England Eye Center in Boston.

I felt she was best prepared to address my biggest post-treatment concern: how to manage the radiation retinopathy in my right eye which mimics the damaging effects of macular degeneration, her area of expertise.

Dr. Seddon led the center in Massachusetts for the National Eye Institute’s Age-Related Macular Degeneration Study (AREDS 1992-1998), a clinical trial that showed that high levels of antioxidants and zinc significantly reduce the risk of advanced age-related macular degeneration (AMD), the leading cause of irreversible blindness in people 50 years or older in the developed world. She recently published a follow-up study with AREDS participants that found “an individual’s response to AREDS supplements may be related to their genotype.”

In other words, your genetic make-up could determine whether or not you will respond to the nutritional oral supplements beneficial to AMD treatment.

Essentially, the first AREDS trial proved what provides the benefits against AMD (zinc, beta-carotene, Vitamin C/E) while the second trial proved who derives the benefit (individuals with the CFH genotype).

Welcome to the era of personalized medicine in which even your nutritional therapy is determined by the ingredients in your genetic soup.

Radiation retinopathy presents the same vision loss as AMD, due to blood vessel leakage and inflammation, although for much different reasons. To offset the radiation damage, I have been taking 3600 mgs of fish oil (omega-3) daily since my treatment for choroidal melanoma three years ago.

Contrary to clinical expectations, while I no longer have sharp, correctable center vision, I still enjoy a full visual field and my retinopathy has stabilized. So, during my appointment with Dr. Seddon last Friday, we discussed phase two of my post-treatment plan: protecting the vision in my healthy left eye.

As a result, I have added PreserVision to my daily supplement dosing. Research may never target the visual concerns of the post-treatment eye cancer (also called uveal melanoma, choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma) community. Yet, the results of the previous and current supplement trials (AREDS2) may be interpreted to hold potential benefits for some of us, too.

There's no down side to supplements (always consult your eye doctor), and they just may help. Medicine that does no harm. Always the first choice of care.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Eye-poppin' Fun

Today, I take a break from the serious side of eye cancer (also called uveal melanoma, choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma) and merrily wander the world of eyeballs, which like the heart, represent a pretty big chunk of our everyday experience.

The eye is represented on our financial instruments, most famously the Eye of Providence on the back of the $1-dollar bill.

In the media world, there’s the CBS eye (which I have always found creepy; maybe their ratings would improve with a new logo).

The literary world abounds with eye references including the mythical Greek figure of Cyclops, and my favorite from Shakespeare’s Othello in which Iago says to Othello, “O, beware, my lord, of jealousy; it is the green-eyed monster, which doth mock the meat it feeds on.”

Then there’s the thrilling historical battle cry from Bunker Hill – one of my favorite Boston monuments - in which Colonel William Prescott ordered his troops to, "Don't fire until you see the whites of their eyes!"

In social issues, the series Eyes on the Prize, movingly told the Civil Rights story.

Long before in-car DVDs, I-pods and hand-held electronic games, my five siblings and I would play fierce games of “I-spy with my little eye,” on long road trips to pass the time.

Our language reflects the eye motif with phrases such as evil eye, apple of my eye, keeping my eye on you, snake eyes, among so many others.

On e-bay, an online auction community, you can search under “human eye prosthetic” and find dozens of beautiful and old glass eyes made by German craftsmen. Today’s ocularists use high-tech plastic.

There’s even an Eye Museum on the Web.

Finally, for silly fun, there’s Oriental Trading Company, where you can purchase items with bulging, wiggling, bouncing, glow-in-the-dark, flashing and edible eyes.

E-mail me other oddball eyeball phrases, references or images and I'll post them in a future blog.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Spitting in Cancer's Eye

Once upon a time, cancer books from a patient perspective didn't exist, mostly because patients, despite having an enormous stake in the process, didn't have a corresponding voice in their care. A "don't ask, don't tell" attitude pervaded both the medical and patient community.

Then, in 1974, First Lady Betty Ford revealed her breast cancer - a shocking and controversial act because that violated the societal taboo that cancer patients didn't publicly discuss their disease.

This was followed in 1976 by journalist Betty Rollin's groundbreaking book, First You Cry, in which she challenged the conventional wisdom of radical and disfiguring mastectomy surgery for breast cancer.

The cancer conversation started taking a dramatic turn, moving beyond the purely clinical dimensions of the disease and toward a more profoundly personal experience.

By the early 1980s, the publishing world was churning out hundreds of cancer memoirs and biographies. These early books were raw expressions of pain, fear and disappointment, largely reflecting the dismal cancer landscape.

By the 1990s, though, partly due to the Race for the Cure, AIDS (which, due to intense activism, went from a 6-month death sentence in the 80s, to a chronic disease by the 90s), as well as Lance Armstrong and others, cancer awareness took a decidedly patient-empowered tone.

Even better, the improved personal outlook was matched by corresponding advances in the clinical world, once again raising the age-old question: which came first, the chicken or the egg?

Do medical advances improve patient outlook? Or does patient outlook improve medical advances?

Maybe all along, we've always needed both.

Which is why I am working on a graphic novel about my experience with eye cancer (also called uveal melanoma, choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma). There is no question we need to improve the medical advances for our cancer. And maybe the place to start is in our outlook.

In the meantime, check out this Amazon Listmania! for books and DVDs that spit in cancer's eye.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Patient Focus

When I launched the Eye Cancer Blog in September of 2006, there were exactly 4 other patient-run websites/blogs on choroidal melanoma. They were:

eye-melanoma.com - October 2003 (now defunct)
Chicago Support Group - March 2004
eyecancer.blogspot.com/ - Feb. 2005
Yahoo! ChoroidalMelanoma Chat Group - June 2005

Since then, dozens of regularly updated web, blog or social networking sites have emerged. Further, ocular melanoma (also called choroidal melanoma, uveal melanoma, intraocular melanoma, and eye melanoma) is more reported in the mainstream media channels – both mainline and online.

So, what changed? Here are a few ideas.

1. Collaborative Ocular Melanoma Study: COMS was the first government-funded clinical trial of choroidal melanoma. The ten year, $65-million dollar randomized trial studied whether plaque radiation therapy was as effective as enucleation in the treatment of medium and large choroidal melanomas. The sheer scale – over 40 participating centers in 2 countries (US and Canada), almost 2500 patients, 28 major reports, hundreds of ancillary studies and news releases - put ocular cancer on the medical map and in the public eye.

2. Physician Awareness: Because of COMS, optometrists and general practice ophthalmologists are better educated on how to recognize ocular tumors and to refer these patients to either retinal specialists or ocular oncologists.

3. Technology: Improved treatment has not led to improved survival rates. However, better diagnostic testing such as digital imaging, along with increased physician awareness, is resultng in earlier detection of smaller, more treatable ocular tumors, which may change the mortality rates.

4. Cellular Research: The molecular and cytogenetic properties of ocular melanoma are better understood which is allowing more doctors to honestly and compassionately counsel at-risk patients about their future care.

5. Patient Awareness: Younger patients (the average incidence is 60-years old) have come of age during the patient rights movement (access to medical records, second opinions and support groups). More importantly, because of the Internet, all patients can share their experiences through free services such as Google’s Blogger and the social networking sites of Yahoo!, MySpace, Facebook, and Friendster, among others.

This factor is the vital link to the final and most important change, which is:

6. Patient Advocacy: When patients start collaborating in managing their disease, real change happens. This kind of grass-roots activism has been successful in breast and prostate cancer as well as AIDS. The See A Cure Foundation, a patient-based nonprofit, is the inevitable result of all these progressive changes.

It’s your sight.

It’s your life.

Together, we can see a cure.™

A Fishy Situation

Traditionally, traditional doctors are suspicious of untraditional medicine.

But Dr. Johanna Seddon, my post-treatment retinal specialist, is the happy exception to this dogma.

On my first visit, Dr. Seddon asked what medications I was taking.

“Nothing besides an occasional Motrin,” I replied.
“Any supplements or vitamins?” she asked.
“Well,” I said, “I take three tablets of 1200 mgs of fish oil every day.”
“Really,” she said. “And why is that?”

Her tone was not at all unfriendly, but my guard went up. Here we go, I thought, another doctor who thinks nutritional medicine is an oxymoron.

“For eye health,” I answered. “My primary care physician said fish oil may reduce the inflammation associated with my radiation retinopathy."

Radiation retinopathy is a devastating side-effect of plaque radiation therapy (also called episcleral plaque therapy or brachytherapy) for eye cancer - also called choroidal melanoma, uveal melanoma, intraocular melanoma, eye melanoma and ocular melanoma - in which blood vessels damaged by the radiation leak fluid and cause swelling which can lead to severe vision loss.

“Besides,” I continued, now a little defensively, “she said it wouldn’t hurt and it just may help.”
“And how long have you been taking fish oil?” asked Dr. Seddon, as she continued jotting notes in my chart.
“Let’s see, since right after my treatment 2 ½ years ago,” I answered.

Dr. Seddon stopped writing and looked directly at me.

“In studies on macular degneration, we’re seeing reduced risks in patients who are taking less than half that omega-3 dose each day. "

Macular degeneration is an eye disease that, while the causes may be different, such as age and diet, vision loss is the same as in radiation retinopathy which usually develops in patients treated for posterior eye cancer. And although no studies have been done for omega-3 on radiation retinopathy, fish oil could hold potential for those patients.

"It's fine to continue with your supplement,” she said and returned to my chart.

I was delighted. One of the reasons I had picked Dr. Seddon was for her expertise in retinal and macular issues, which were going to be my biggest post-treatment concerns. That much I already knew about her. The surprise bonus was also finding out that she is a vocal research advocate of non-invasive, affordable and accessible eye health through available nutritional means.

And there’s nothing fishy about that.

It’s your sight.

It’s your life.

Together, we can see a cure.™

An Eye on Jules Stein

With so little mainstream information available on eye cancer (also called choroidal melanoma, uveal melanoma, intraocular melanoma, eye melanoma and ocular melanoma), when I do find an obscure mention that is even tangentially related to this cancer, I get excited.

For example, I am reading the book, Falling Leaves, by Adeline Yen Mah, whose journey takes her from her native Shanghai - as the neglected and abused daughter of an affluent Chinese family - to America, and a life as a successful doctor and author.

And there on page 173 is this: “On their arrival, Byron and I took Roger to meet them at the airport. Niang insisted on staying in Universal City, fifty miles from our home, at a hotel owned by their rich American friends, the Jules Stein.”

You may be thinking, “OK, calm down. Where’s the eye cancer in all that?”

Well, ophthalmologist Dr. Jules Stein and his wife, Doris, founded the Jules Stein Eye Institute at UCLA in the 1960s. One of their founding directors, Dr. Bradley R. Straatsma, made his clinical interest in ocular oncology part of JSEI’s focus.

In the mid-1980s, Dr. Straatsma helped to organize the NIH-NEI Collaborative Ocular Melanoma Study (COMS), a groundbreaking, randomized clinical trial that proved that plaque radiation therapy was as effective as enucleation in the treatment of primary choroidal melanoma.

Today, Tara A. McCannel continues Straatsma’s mission at JSEI. Her work on monosomy 3 has helped to enlarge our understanding of the molecular and cytogenetic properties of ocular melanoma. And her patient handbook, Ocular Melanoma: Diagnosis and Treatment, which she co-authored with Dr. Straatsma, is a patient-centered eye cancer guide.

Before my July 2005 diagnosis, that minor mention on page 173 in Falling Leaves would have meant nothing to me. But today, threee years later, nothing that even hints at an eye cancer association escapes my notice.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Ocular Melanoma Video - Dr. Carol Shields

In this video, Dr. Carol Shields, the Associate Director of the Ocular Oncology Service at Wills Eye Hospital and a Professor of Ophthalmology at Thomas Jefferson University School of Medicine, discusses how ocular melanomas are diagnosed.

She has authored an astonishing 700+ articles, and is widely recognized as a preeminent authority on ocular tumors (also known as choroidal melanoma, uveal melanoma, eye melanoma, eye cancer, intraocular melanoma and ciliary body melanoma).

Of interest, Dr. Shields also played basketball for the Notre Dame Fighting Irish, and was given their highest honor for excellence in academics and leadership.

It’s your sight.

It’s your life.

Together, we can see a cure.™