Fighting for Hope: One Retinoblastoma World 2017

“The One Retinoblastoma World mission is to ensure that every caregiver has access to appropriate knowledge, skills, resources and collaborative opportunity to enable high quality evidence based care for each affected child, survivor and family.”

Every day, new strides are being made towards developing the field of eye cancer. Whether through published papers, international gatherings for ophthalmologists, or patient support group therapy, efficient communication remains a crucial contributor to progress. It was precisely the communication — in fact — between eye cancer patients and ocular oncologists that spearheaded The One Retinoblastoma World Conference that was held October 9-11, 2017 in Washington DC.

At this meeting, families, survivors, and doctors came together to inspire, share, educate, and learn concerning all matters of childhood retinoblastoma. But what, you may be wondering, is childhood retinoblastoma anyway? When born and throughout early stages of life, in areas like the United States where proper medical care is available, children are routinely screened for a childhood eye cancer called retinoblastoma. If diagnosed early, this disease is curable. However, as many as 7,000 children die each year due to improper diagnoses or in-access to proper medical care. No child should die, or suffer avoidable blindness because of that. One Retinoblastoma World is dedicated to breaking down the obstacles that prevent proper treatment for these children.

Ten questions asked by parents and survivors served as a basis for the meeting’s evolution. Because doctors and patients can sometimes be separated by the scope of complicated medical language, these questions better familiarized researchers with the common concerns of patients.

Here were some of the questions:

  • Can we screen for retinoblastoma, and if not, what are the best ways to improve early diagnosis?
  • What do my / my child’s genetics results mean for risk and screening, -current treatment, EUAs after treatment, and for adult life? What do we do if we can’t access genetic testing?
  • How do doctors know when trying to save an eye is dangerous, and removing it is the only option? How do we best care for the socket throughout life?
  • How do doctors and parents make the decision about adjuvant chemotherapy?
  • What is the status of Rb in developing countries? I’ve been contacted by a family in a developing country whose child has Rb. What can I do to help them?
  • What recommendations do you have for long term follow up care and screening in RB1 mutation carriers and children treated with chemotherapy / radiotherapy? How can you help us educate our primary doctors so they take us seriously, and what can we do if we have no access to a survivor / follow-up program?

Each of these questions were answered in a specific panel addressed by researchers, doctors, and clinicians to families and survivors. This proved greatly beneficial to those in attendance. But the collaborative effort did not stop there! The education these sessions provided were not restricted to those able to physically attend. Indeed, the meeting was live streamed to achieve global access for all. As the DC team explains:

“We wanted to make One Rb World 2017 truly a global event. We wanted parents, survivors and medical professionals to join us from across the USA and around the world, even if they couldn’t travel to Washington DC. Live stream viewers were able to interact with speakers and participate in discussions by sending written comments and questions via the live stream system. Their comments were received and shared by several dedicated volunteers in the conference room.”

The DC team is currently working with an editor to publish the livestream for future public viewing. Stay tuned to our blog posts to keep updated on when that will be! Additional information concerning One Rb World 2017 can be found here, including a full list of their program and the subjects of each panel.

One Retinoblastoma World 2017 marks a great advancement in the fight to defeat retinoblastoma. Through the efforts of specialists and advocates combined can we hope to ensure that all children have access to high quality care. We urge you to join us in the fight; have your voice be heard, and be a part of the cure.

To stay updated on all the latest in eye cancer research, please keep our website in your bookmarks!


Visionary Newsletter — Fall 2017

The Fall 2017 issue of The Visionary is now available!

The Eye Cancer Foundation publishes The Visionary free-of-charge to keep you informed about the latest news, research, and global efforts focused on improving eye cancer treatment, diagnosis, and cure.

In this edition, you will find articles about:

  • Details regarding the highly anticipated Second Eye Cancer Working Day and its success
  • A study by ECF fellow Dr. Bikramjit Pal on chemotherapy side effects for eye cancer patients
  • And more!

Click here to read The Visionary now!

Read back issues of The Visionary here.

The Eye Cancer Foundation can send The Visionary directly to your inbox. If you’d like to receive a personal email notification when new editions of The Visionary are released, please click here and fill out your contact information in order to subscribe. Your information will not be shared with third parties.


The NYECC Support Group’s Next Meeting! Attend In-Person or via Phone!

After two successful meetings where eye cancer patients and survivors shared their feelings in a welcoming, comfortable environment, The New York Eye Cancer Center Support Group, sponsored by The Eye Cancer Foundation, will meet for a third time on November 17, 2017 at 1:30 PM, Eastern Standard Time. This meeting, like its previous ones, will be held at The New York Eye Cancer Center’s conference room located at 115 East 61st Street, New York City, 100065.

Are you halfway across the country? In Texas, California? Are you unable to make it due to working hours, or even that dreaded New York City traffic? Because many potential visitors have expressed their desire to attend but are unable to make it due to any travel inconveniences, we would gladly like to inform anyone that these meetings may be attended via phone call! Regardless of where you are located, the NYECC Support Group wants your voice to be heard! Simply call Karen Campbell, a Licensed Clinical Social Worker who helps facilitate these meetings, and mention that you would like to attend via phone.

You can find Karen’s biography below:

“I am a Licensed Clinical Social Worker (LCSW) and have been practicing in the field for 24 years. In addition to my private psychotherapy practice, most recently, I was in the Director of Vision Rehabilitation Services at the Lighthouse Guild. I started up the Social Work Department at Lighthouse International in 2010 and, as part of that, developed and faciliated the Department’s Support Group program. I also have a background in medical social work, including oncology, having worked at NYU/Langone. I have found support groups to be a valuable way for people to manage their medical challenges and address issues such as family adjustment, depression, anxiety and loss. Although I work primarily with individuals and couples in my private practice, I really enjoy working with groups!”

As we’ve mentioned previously in our regular updates regarding this support group, stress and anxiety are normal experiences for anyone enduring an eye cancer diagnosis. And although it is normal, there are ways to combat these feelings by having a solid support system. For some, these support systems are crucial in order to find one’s bearings and coming to terms with “a new normal”, both of which are important in overall quality of life.

 

Please consider downloading our flyer for November’s meeting here. We hope to meet you there! And to stay updated on all upcoming sessions, please keep our website, eyecancer.com in your bookmarks!


The NYECC Support Group Therapy: A Recap!

The New York Eye Cancer Center Support Group, sponsored by the Eye Cancer Foundation, met for the second time on October 13, 2017. Members in attendance were in varying stages of their treatment and recovery, ranging from a few months to over a decade! Karen Campbell, a licensed clinical social worker with years of experience in oncology and vision loss, led the group in their discussion.

Group members shared the struggles of living with cancer and what their “new normal” is like, such as the need for ongoing scans and check-ups. Anxiety and depression around loss of control, feelings of isolation, and worries about the future were common themes, as was the need for ongoing support. Techniques for coping with these experiences and stressors were discussed and Karen lead the group in a guided imagery relaxation exercise that members found helpful.

Dr. Finger’s associate, Dr. Olszewski, was also in attendance and said, “Mental health is such an important part of overall well-being and quality of life, especially after a life changing diagnosis, such as ocular melanoma. We saw the perfect opportunity to introduce holistic care to the practice by starting this support group. Thanks to the support of the Eye Cancer Foundation, we are working hard to provide monthly group meetings for patients with this diagnosis. Karen Campbell is a natural fit for steering the meeting, given her experience in dealing with patients with both cancer and vision loss.

It was my pleasure to attend our second group session. Although I do not have a personal history ocular melanoma, I shared my experiences as a provider in this practice. I also have family members with cancer diagnoses and shared my feelings and point of view as a member of their support systems. I found Karen’s guided breathing exercises particularly enlightening; I felt an immediate wave of calm wash over me as she spoke, which stayed with me, even after I left the meeting. I truly believe that many of our patients would benefit from attending these group sessions.”

Stay tuned for an upcoming announcement regarding the date, time, and place of the next NYECC Support Group session.


The Eye Cancer Foundation Annual Appeal

 

As the year draws to close, as we round out the end of 2017 with holidays celebrating unity, generosity and love, now comes the time for reflection. The year 2017 marked great, landscaping efforts in the field of eye cancer research and training from The Eye Cancer Foundation, culminating perhaps most fantastically with the profound success of The Second Eye Cancer Working Day held in Sydney, Australia, among many other exciting projects. The achievements of this year have served as poignant reminders that hard work and focused philanthropy can support great progress. These accomplishments, shared throughout the buzzing Eye Cancer Foundation’s website, could not be completed without the generous help of donors. For this, the volunteers at The Eye Foundation are extremely grateful.

Your support enables The ECF team to provide much needed fellowship opportunities for new eye cancer specialists from previously unserved countries. As you may know, 7,000 babies with retinoblastoma die each year in the less developed world. The ECF has made a priority of training eye cancer specialists for these countries and will need to support them upon their return. The 2020 initiative, which aims to train 20 retinoblastoma doctors in 20 underserved countries, has already provided fellowship education for 12 deserving ophthalmologists. The ECF’s partnership with The International Council of Ophthalmology (ICO) enables this, ensuring the quality of training these fellows receive. It is through your support that these fellowships were established with success, and because of this, children who were born to less fortunate circumstances have a chance at vision and life.

The ECF is especially excited to have sponsored The Second Eye Cancer Working Day, an event bringing together eye cancer specialists from around the world, which embodied much of what The Foundation is all about. In the Working Day, there were sections on developing big data registries used to answer questions that could not be addressed by single center studies. There were initiatives for standards in fellowship education, Dr. Tero Kivelä presented an initiative to promote doctors reporting their clinical outcomes. In addition, The ECF’s open access surgical text and movie atlas was highlighted, and will become public within the next sixth months.

Your gift today demonstrates your dedication to supporting an exciting, functional, and deeply important effort to promote multi-center and international cooperation in ophthalmic oncology. Your gift today will save both vision and lives all over the world. With so much to look forward to, The ECF team hopes they can count on your support.

Please consider making your gift to The Eye Cancer Foundation today, and be a crucial part in this fight against eye cancer. Donate by visiting The Eye Cancer Foundation website, eyecancercure.com, or simply click here.


Eye Injections 101

An intraocular injection (i.e., an injection made directly into the eye) may sound intimidating, uncommon, and dangerous. But did you know that intraocular injections are one of the most common surgical procedures practiced today in the United States? These injections are used mostly to treat macular degeneration, a deterioration of the sensitive, central portion of the retina (the macula) that makes it the leading cause of vision loss in Americans, more than cataracts and glaucoma combined (American Macular Degeneration Foundation). In 2005, Dr. Paul T. Finger discovered that these intraocular injections can be used towards another effect: in the vision-sparing treatment of radiation retinopathy.

Radiation retinopathy, or neuropathy, occurs as a side effect of the radiation used to treat orbital tumors or melanoma. When radiated, the retina and optic nerve may be progressively damaged over time, which can lead to permanent loss of vision if left untreated. Thus, intraocular injections of ANTI-VEGF therapy, such as Avastin or Eyelea, can help to suppress this retina and optic nerve damage caused by radiation treatment.

At The New York Eye Cancer Center, we aim to provide you with the best possible information regarding intraocular injections to ease any misgivings. We are constantly monitoring our patients who have undergone treatment to watch for signs of radiation retinopathy, and if injections of ANTI-VEGF therapy are required. For these patients, we have published a video that provides all necessary information regarding their expected injections, and what they can expect before, during, and after therapy. We stress, particularly, that treating radiation retinopathy is similar to the concept of treating hypertension (high blood pressure) or diabetes; the drugs administered will diminish the damage for these long-term medical conditions.

You can watch this video below at your convenience:

Eye Injection: Intraocular Injection at The New York Eye Cancer Center from Paul T Finger on Vimeo.

We have more upcoming videos available for public viewing at The New York Eye Cancer, so kindly consider keeping eyecancer.com in your bookmarks to stay tuned for them!


New Details Regarding the NYECC Support Group!

As you may have read in our blog the week prior, The New York Eye Cancer Center is pleased to announce that we, with the support of The Eye Cancer Foundation, are hosting periodic group therapy sessions for our patients. Life after diagnosis and treatment of an ocular melanoma can cause stress and anxiety. Although it’s normal to feel this way, many people do find that having a solid support system is crucial in finding their bearings and coming to terms with “a new normal”, both of which are important in overall quality of life.

Friends and family can be excellent support systems, but there can also be a benefit to sharing your feelings with other patients who have had very similar experiences. The New York Eye Cancer Center Support Group is seeking to provide you with this emotional outlet. Our support group is facilitated by wonderful licensed clinical social worker, Karen Campbell.

You can find Karen’s short biography below:

“I am a Licensed Clinical Social Worker (LCSW) and have been practicing in the field for 24 years. In addition to my private psychotherapy practice, most recently, I was in the Director of Vision Rehabilitation Services at the Lighthouse Guild. I started up the Social Work Department at Lighthouse International in 2010 and, as part of that, developed and faciliated the Department’s Support Group program. I also have a background in medical social work, including oncology, having worked at NYU/Langone. I have found support groups to be a valuable way for people to manage their medical challenges and address issues such as family adjustment, depression, anxiety and loss. Although I work primarily with individuals and couples in my private practice, I really enjoy working with groups!”

Karen brings to the practice her years of experience in counseling patients with both cancer and vision loss, making her a perfect fit for the NYECC family.

You can meet her and other patients at our next group therapy session at the NYECC on Friday, October 13, 2017 at 1:30 PM, Eastern Standard Time.

We hope to see you there!

And to stay updated on all upcoming sessions, please keep our website, eyecancer.com in your bookmarks!


Plaque Brachytherapy Can Now Help More Patients Facing Enucleation

Eye-sparing plaque brachytherapy can now help more patients with uveal melanoma versus enucleation.

The American Brachytherapy Society (ABS) reports that more patients with uveal melanoma will be able to spare their eye by widening the criteria for plaque brachytherapy.

It had been 10 years since guidelines for the treatment of uveal melanoma were published — but now, updated ABS consensus guidelines have been newly established by the ABS-Ophthalmic Oncology Task Force. Using clinical experience with eye cancer and knowledge of the literature, 47 radiation oncologists, medical physicists, and ophthalmic oncologists from 10 countries were able to produce these collaborative guidelines.

To view these published guidelines via PubMed, click here. For your convenience, we have here a summary of the updates ABS guidelines for plaque brachytherapy treatment:

  • Tumor classifications were updated to reflect the AJCC T-staging system.
  • Utilizing this system, T1, T2, T3, and T4a-d uveal melanoma patients can be treated, after counseling about likely vision, eye retention, and local control outcomes.
  • Small melanomas can be treated at the eye cancer specialist’s discretion (not only for evidence of growth)
  • Uveal melanomas near, touching (juxtapapillary) and surrounding (circumpapillary) the optic nerve can be treated with radiation therapy; however patients with tumors in this location as well as subfoveal tumors and those with exudative retinal detachments may have poorer vision outcomes and local control.
  • Extrascleral tumor extension does not exclude patients from plaque brachytherapy, unless they are classified as T4e (extraocular exrtension is >5mm in diameter).
  • Clinical diagnosis of uveal melanoma is still considered adequate for treatment (no change from 2003 guidelines). Histopathologic verification is not required.

The ABS recommends, additionally, that plaque procedures be performed in specialized centers with expertise in ophthalmic brachytherapy. Their report discusses guidelines for plaque and radionuclide selection (including dose prescription), and follow-up after brachytherapy.

Previously, some patients may have felt like enucleation was their only possible treatment, and undergoing a surgery to remove the eye is no easy decision. These new ABS guidelines will help to expand the number of patients eligible for plaque brachytherapy and reduce the number of patients requiring enucleation. With these results, some patients who fit these new criteria have been shown another avenue for hope. And for one’s journey through eye cancer treatment, hope is exceptionally valuable.

Come back next week at eyecancer.com for more information regarding enucleation vs. plaque brachytherapy!


A New Support Group for Eye Cancer Patients is Available!

Stress and anxiety following treatment for choroidal melanoma have been well recognized among patients and studied among doctors. In fact, The NIH-funded Collaborative Ocular Melanoma Study reported on 209 patients with medium-sized melanoma treated with either brachytherapy or enucleation. In this sub-study, their goal was to compare the quality of life between treatment groups using questionnaires.

After questioning patients, researchers found that those undergoing radiation therapy had better quality of life outcomes related to their vision, such as driving, near activities, and binocular vision. After three to five years post-treatment, this benefit did decline, paralleling a decline in vision for the brachytherapy-treatment group (this, of course, predates the advent of vision-sparing anti-VEGF therapy).

However, in the scientific article published for the study, researchers state that “certain patients treated with brachytherapy, particularly those with pre-existing symptoms of anxiety, may suffer from increased risk of anxiety as compared with patients treated with enucleation during follow-up (Archives of Ophthalmology).”

At The New York Eye Cancer Center, we are currently participating in a study evaluating patient reported outcomes after plaque brachytherapy for choroidal melanoma. The more we understand a patient’s reception of plaque brachytherapy and the effect their treatment has had on their lives, the more we can specialize our care for each individual. We strive to offer compassion and understand what our patients are going through on a personal and psychological level. In an effort to help patients deal with their stress and anxiety, The New York Eye Cancer Center has begun to host a support group specifically for eye cancer patients and survivors. Please join Karen Campbell, a Licensed Clinical Social Worker (LCSW), who will facilitate this group. Sponsored by The Eye Cancer Foundation, this group therapy session will be held on Friday, October 13, 2017 at 1:30 pm at The New York Eye Cancer Center. Join us to have your voice heard among peers who understand what you are going through!

For your convenience, please consider downloading this flyer for the Support Group that contains all necessary information. We will host more sessions in the future, so in order to stay tuned for announcements on upcoming dates, please check back on eyecancer.com regularly!

 


Chemotherapeutic Eye Drops 101

If you’ve been recently diagnosed with an eye cancer, such as ocular surface squamous neoplasia or conjunctival melanoma, it’s normal to feel a little nervous – but, there’s good news. It is possible to treat some of these cancers with topical chemotherapy eye drops, like interferon alpha (also called Intron A), instead of surgery. Interferon is commonly used in injection form; however, in 2008 Dr. Finger and his team discovered that interferon in topical eye drop form is very effective at treating tumors on the eye.  It also has the additional benefit of causing fewer side effects in the body!

The following video demonstrates the proper technique for chemotherapeutic eye drop instillation.  These instructions will be the same regardless of the type of chemotherapy eye drop you are using (e.g. Intron A, Mitomycin C, 5-FU).  It’s fine to ask a family member or friend for help, but most people find that they are able to put drops in themselves without a problem.

The New York Eye Cancer Center Instructions for Chemotherapy Eye Drops from Paul T Finger on Vimeo.

The steps are written out below, for your convenience:

  • STEP 1:  Wash your hands and put on latex gloves, if possible. 
  • STEP 2: Lie down flat or recline back in a chair.   
  • STEP 3: Look DOWN and pull back the UPPER EYELID. 
  • STEP 4: Put the drop on the TOP part of the eye.   
  • STEP 5: Slowly close your eye and keep it closed for FIVE MINUTES.   
  • STEP 6: Make sure to gently wipe away any excess. 
  • STEP 7: Wash your hands again. 

Note that it’s easier to instill these drops when you are lying down.  Also, remember to keep these drops refrigerated and to wipe any excess that you may blink out to prevent irritation of the skin.  Most patients tolerate these drops very well, but if you have any concerns or comments, please make sure to speak with your doctor.

Stay tuned for more educational videos by keeping eyecancer.com in your bookmarks!


Patient Stories

"Very well treated by Dr. Finger. He explained everything I needed to know about my issue with detail and attention, putting me at ease and giving me confidence to handle this problem for the rest of my life.”
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