Chinese Family Takes Long Journey to Save Daughter’s Eyes

Lulu was less than 2 months old when doctors in China diagnosed her with retinoblastoma. When doctors located tumors in her eyes, they scheduled her to have her eyes removed that afternoon. But her parents, who are both blind, were determined to do everything in their power to save their daughter’s eyes.

“My husband and I both lost our vision when we were very young,” Feifei Lin said. “Having gone through this, we have to grasp her ever-so-little remaining vision.”

In order to get their daughter treatment, the family raised over $100,000 to travel to United States.

A video produced by Stat News chronicles the family’s saga.

Their journey brought them to New York, where doctors treated Lulu using intra-arterial chemotherapy. This procedure involves treading a catheter into an artery on top of the leg and into the ophthalmic artery. This allows doctors to profuse the chemotherapy medication only into the eye.

Retinoblastoma is the most common intraocular childhood cancer. It affects approximately 300 children in the United States annually, but about 2,000 children in China are diagnosed with the disease each year. Dr. Paul Finger said lack of access to adequate care in many countries turns retinoblastoma into a deadly killer.

“In the United States, less than 2% of children die from retinoblastoma, but around the world, 70% of children die from retinoblastoma. So, what’s the difference? The difference is early diagnosis and treatment.”

The Eye Cancer Foundation is working to change that by training eye cancer specialists to work in underserved countries such as China , India, Bolivia, Vietnam, Mexico, Ethiopia, Yemen, and others.

As part of these efforts, The Eye Cancer Foundation launched its 2020 Campaign. The organization plans to train 20 eye cancer specialists to work in 20 countries by 2020. This will save thousands of children’s lives.

You can become part of the cure with a one-time or recurring donation to The Eye Cancer Foundation. Click HERE to donate today.

New Treatment Option for Patients with Radiation Macular Degeneration

A recent study published in the British Journal of Ophthalmology  by Dr. Richard Kaplan, Dr. Sonal S Chaugule, and Dr. Paul Finger introduces a new treatment option for patients with radiation macular degeneration that no can no longer be controlled with maximum, standard anti-VEGF medication.

Radiation macular degeneration is the most common cause of permanent vision loss in patients treated with plaque or proton radiation for intraocular “choroidal” melanoma. Without treatment, radiation macular degeneration causes substantial vision loss in up to two-thirds of patients at 10 years after their initial radiation therapy.

Dr. Finger’s recently published 10-year study showed that intraocular injections of anti-VEGF medications (Avastin, Lucentis) were effective in preserving vision 80% of patients. However, despite maximum doses of these medications, some patients experience progression of their macular disease.

eye treatment med

The recently published study focused on patients who were not responding to maximum doses of anti-VEGF medication. They treated by adding 4 mg of periodic intraocular triamcinolone acetonide (a steroid injection) to continued maximum anti-VEGF injections.

Kaplan and colleagues noted that adding steroid injections, stabilized or improved vision in 100% of patients at 3 months, 88% at 6 months, 88% at 9 months and 75% at 12 months. A side effect of increased eye pressure after starting the steroid injections was noted in 2 patients. However, the steroid-induced glaucoma was controlled with eye drop medications in both cases. One patient had progression of cataract.

The study authors concluded that intraocular triamcinolone steroid injection is an exciting new option to for patients who no longer respond to maximum, standard anti-VEGF treatment.

2017 Eye Cancer Working Day a Huge Success

The Second Eye Cancer Working Day, hosted by The Eye Cancer Foundation, International Society of Ocular Oncology, and American Joint committee on Cancer took place on March 24th, 2017 at International Convention Center, Sydney, Australia.

The working day provided a unique opportunity for eye cancer specialists from around the world to work together, face-to-face. The goal was to help the subspecialty move forward into the mainstream of oncological care. workind day 2

The day was divided into five sections, each dealing with important, critical problems faced by the ocular oncology specialty. Each session followed the same general format, beginning with an overview presentation by the section convenors, followed by extensive interactive group discussions. These brainstorming sessions allow participants to offer suggestions for work completion and for increasing international collaborations within each subject area.

Following is an overview of the sessions.

Session 1: Comprehensive Open Access Surgical Textbook (COAST)

Conveners: Santosh G Honavar, MD; Sonal S Chaugule, MD; Carol Shields, MD; Dan Gombos, MD; Zenyel Karcioglu, MD; Paul T Finger, MD; Hardeep Mudhar, MD

Authors who coordinated various sections of this oncology surgical guide presented their work at various levels of completion. Participants offered welcomed suggestions to make each chapter both more comprehensive and better focused toward outreach to doctors in underserved areas of the world.

Session 2: Ophthalmic Radiation Side Effect Registry (RASER)

Conveners: Wolfgang Sauerwein, MD; Paul T. Finger MD; Brenda Gallie MD

Presenters discussed information relating to a grading system for ophthalmic radiation side effects. Committed participating centers were announced, and there was an outreach to include new partners. Questions were raised that helped to modify the staging systems and create data fields for this prospective registry.

Session 3: Fellowship Outreach Retinoblastoma (FOR-RB)

Convener: Ashwin Mallipatna, MD

The proposed curriculum for fellowship training in retinoblastoma management was opened for discussion. Input from participating experts from various training institutes was documented. Excellent feedback offered by participants will be used to help finalize the first curriculum for ophthalmic oncology fellowship education.

Session 4: Doctor Reported Outcome (DRO)

Conveners: Tero Kivelä, MD; Bertil Demato, MD; Ezekiel Weis, MD

Dr. Kivelä utilized an hour-long question and answer period to help guide ophthalmic oncology toward outcome reporting. Participants discussed available methods for data collection related to DRO aimed to improve quality assurance of centers worldwide. Subjects ranging from online reporting of published outcomes to prospective collection of outcome data were also discussed. Additionally, participants considered the results of an ongoing multicenter project of Patient Reported Outcomes (PRO).

Session 5: Multicenter International Registries (MIR)

Conveners: Bita Esmaeli, MD; Brenda Gallie, MD; Martine Jager, MD

New, completed, and ongling international multicenter projects were summarised. The panel highlighted accomplishments, including retrospective registry-derived answers to important clinical questions related to choroidal melanoma staging, the failure of local control, retinoblastoma staging, and ocular adnexal lymphoma. Ongoing registries were enumerated and attendees were invited to participate. These included vitreoretinal lymphoma, conjunctival melanoma, and eyelid tumors. The process and requirements for participation of new centers in the registries was also discussed. Dr. Zeynel Karcioglu called for establishment of a chemotherapy side effects registry (in consideration of the advent of IAC and the many biotherapies with ophthalmic side effects).

The day was concluded with discussion by doctors Paul T Finger, Martin Jager, Ashwin Mallipatna, Brenda Gallie, Tero Kivelä, Wolfgang Saurwein, and Bita Esmaeli relating to future courses of action. Dr. Finger strongly suggested that the WD initiatives should be part of the International Society of Ophthalmic Oncology (ISOO), noting that most cancer subspecialties have them, and that ISOO committees need be formed to move forward.

Here is a video clip of the discussions that took place in Sydney, Australia’s, Second Working Day.


Developing a Common Language for Eye Cancer Specialists

Led by its chair Dr. Paul Finger, The Ophthalmic Oncology Task Force (OOTF) is building a foundation of multicenter, international consensus guidelines to allow for better communication and patient care.

Along with the AJCC and the Union for International Cancer Control (UICC), the American Brachytherapy Society (ABS), The American Association of Physicists in Medicine (AAPM), and The Eye Cancer Foundation (ECF) have all supported or adopted the work of the OOTF. Each has contributed to important steps toward collaboration in the field of ophthalmic oncology.AJCC Cancer Staging Manual, 8th Edition

The centerpiece of these efforts is the 8th edition of the American Joint Committee on Cancer (AJCC) Cancer Staging Manual.

AJCC-UICC tumor staging allows every eye cancer specialists to describe each patient’s cancer in a standardized way. It provides descriptions of the size, shape and distribution of the primary eye tumor, as well as the involvement of lymph nodes, or its spread within the body. Using the AJCC-UICC eye cancer classification, each medical professional can communicate the exact extent of each patient’s local and systemic cancer. As a result of an intensive a world-wide effort, the eighth edition of the AJCC Cancer Staging Manual is the most clinically useful TNM-based staging system for ophthalmic oncology.

In addition, The American Association of Physicists in Medicine Task Group-129 offered standardized methods to create eye plaques, calculate their radiation doses, describe quality assurance safety guidelines, and to review ophthalmic radiation therapy.

The American Brachytherapy Society also asked Dr. Finger to lead the OOTF in creation of consensus guidelines for plaque radiation of intraocular melanoma and for the childhood cancer retinoblastoma.

These efforts have provided a framework for multicenter, international cooperation in ophthalmic oncology.

In a recent editorial published by the American Academy of Ophthalmology, Dr. Finger explains the process that led to publication of the manual, and its importance.

“By speaking a scientific language understood by our nonophthalmic colleagues around the world, AJCC-UICC staging allows ophthalmology access to the mainstream of cancer care.”

We urge you to adopt the eighth edition of the AJCC-UICC classification system in your clinic, for research and in all eye cancer publications.

You can read the full editorial here.

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