Welcome to the CURE OM Forum, a community bulletin board designed to address the needs of the ocular melanoma community – patients and caregivers alike. Here you’ll find answers to questions about OM diagnosis and treatment, and support from people from all stages, levels of treatment and from all over the world.

Questions about what to post? Visit our forum posting policies for guidelines.

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Racheal1987's picture
Replies 2
Last reply 3/2/2014 - 2:24pm

Hi Everyone,

I'm completely new to this site and am already excited about all the info that seems to be on here. I am a 26 year old living in Vegas currently but will be moving very soon to Japan for a great job opportunity. I am currently healthy (all negative on my PET scans, blood work, etc.). I however am only 2 years out of my diagnosis so I still will need checkups every 6 months with an oncologist and probably monthly check ups with a retinal specialist. My question is, does anyone know of any resources or great doctors in Japan in the Tokyo or Yokohama areas? I know this is far fetched, but I just thought I'd throw it out there. 

Also, I'm wondering if anyone else has experienced radiation reinopathy after having the radtaion plaque surgery done? My eye formed a pretty large blood clot about a year and 2 months after my surgery and I've had to have extensive PRP laser done on my retina in order to stop the abnormal blood vessels from forming. I am just wondering what experience everyone else has had with that? 

After my surgery, I had severly decreased vision (maybe 75% gone due to the placement of the tumor being smack in the middle of my eye) in my treated eye and since the laser treatments have destroyed what little healthy retina I had left, I'm 98% blind now in that eye. It's hard to deal with at times, it makes me really sad to consider what a valuable treasure I've lost and the treatments are super painful to me, even with the painkillers the doctor gives me before the treatment. My doctor at UCLA advised me that if my body doesn't get the blood vessels under control that it could lead to glaucoma and possible enucleation after that, which is obviously the worst case scenario and my worst nightmare. I'm in a wait and see phase right now to see if the laser is having any effect on these blood vessels forming, and I hope to God that it's working. It's hard sometimes being the only person that I know of with this condition because no one really understands what we go through or how we feel. It would be so awesome if anyone else could share their experience and maybe some advice with me?

Thanks for reading this long post and for any help that you all could give!

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jmccay's picture
Replies 3
Last reply 2/21/2014 - 12:04pm

Hi Team,

My mother is meeting with Docs tomorrow (Jan 16) with the option to start ipi / Yervoy.  She is 73 and already pretty weak and tired and in bed most of the time.  So she is worried about side-effects and "what's the point?".

She had her eye out last Feb 2013 but the melanoma has spread to long bones and liver too.  So far this treatment is the only option being offered, or we let nature/cancer take it's own course.

We would love to hear from anyone - especially OM - with ipi experiences.

Much Appreciated & Best of Luck!

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Hi everyone, 

I wanted to take a second to remind everyone that CURE OM will be hosting its 3rd Annual Patient & Caregiver Symposium, Eyes On A Cure, at The Hotel Palomar in Los Angeles, CA, on March 1 & 2.  This year's event is being held in conjunction with Jules Stein Eye Institute and UCLA. For more details on the event, click on the link below:

As always, this event is free. There is a block of hotel rooms that is reserved for just a couple more days. If you have any questions, please contact me at


Hope to see you there!


The battle was lost, but the war must go on until a cure is found.

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ThatHomeschoolDad's picture
Replies 1
Last reply 1/14/2014 - 7:29pm
Replies by: jeanjean

Renee Zalinsky at Jefferson asked me to spread the word:


Webinar next Thursday, November 21st at 1pm EST with Dr. Jingduan Yang who will discuss integrative care and the mind/body connection in confronting cancer. Dr. Yang is the Founder and Medical Director of Integrative Psychiatry and Natural Medicine at New York's Tao Institute.
We want to provide questions from the OM community to Dr. Yang in advance of the webinar, so please submit ideas and inquiries to Jessica:  jessica@ocularmelanoma
Audio dial-in: +1 (773) 897-3000
Access code: 686-229-485
About Dr. Yang

Dr. Jingduan Yang is a leading physician, board-certified psychiatrist and international expert on classic forms of Chinese Medicine. He uniquely incorporates acupuncture, Chinese herbal medicine, neuro-emotional technique, nutritional and dietary consultation, psychotherapy and medication management in the care of patients with a variety of emotional and physical illnesses. Following family tradition, he is a fifth generation teacher and practitioner of Chinese medicine, specializing in acupuncture.

Dr. Yang received his medical and neurology training at the Fourth Military Medical University in Xian, China and completed a research fellowship in clinical psychopharmacology at Oxford University in the United Kingdom as well as residency training in psychiatry at Thomas Jefferson University in Philadelphia. He has authored numerous peer-reviewed articles and has been a speaker at several national and international conferences and academic forums. In 2008, after two years of intensive training in areas including botanical medicine, mind-body physiology, nutrition, and holistic clinical care, Dr. Yang completed a prestigious Integrative Medicine Fellowship at the University of Arizona launched in 2000 by internationally-recognized integrative medicine pioneer Dr. Andrew Weil.

Dr. Yang is the founder and medical director of Tao Integrative Medicine. In addition, Dr. Yang is the Director of Oriental Medicine and Acupuncture Program at the Jefferson Mryna Brind Center of Integrative Medicine and Assistant Professor of psychiatry and human behavior at the Thomas Jefferson University Hospitals.


Keep Rowing!

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Molly- CURE OM's picture
Replies 2
Last reply 12/10/2013 - 3:57pm
Replies by: joelcairo

Hi everyone, 

I wanted to take a second to post some photos (hopefully it worked!) from the recent CURE OM Scientific Meeting. This meeting was held this past Sunday, November 17, 2013, in Philadelphia. Approximately 130 researchers and physicians attended this bi-annual event. 


Sunday, November 17, 2013

Today's workshop organized by CURE OM, NCI, and SMR- Emerging Research in Uveal Melanoma and Implications for Treatment: Current Status and Future Directions- was opened this morning by CURE OM Co-Founder and Director, Dr. Sara Selig, who gave patient and caregiver perspectives by sharing the words you all shared with us- thank you for helping us open this important international scientific meeting with words from the OM patient/caregiver community! We are hopeful today's meeting will get us closer to a cure!


Monday, November 18, 2013

Yesterday's international scientific meeting, organized by CURE OM and the NCI, was the largest scientific gathering specifically focused on ocular melanoma yet! CURE OM is working with the NCI to write up a report from yesterday's meeting. The morning sessions were spent sharing research updates from different labs and trials around the world-- including updates from CURE OM research grant recipients. A good deal of the afternoon was spent discussing how to have the best and most effective international collaboration to accelerate clinical trials, and, thus, more effective treatments, for patients and we are making headway developing better collaborative infrastructure for clinical trials and a way to make them more accessible to patients!
Tuesday, November 19, 2013
We had a dynamic panel discussion during Sunday's CURE OM/NCI scientific meeting- discussing the logistics of accelerating international OM clinical trials. Thank you to all who participated-- we are getting closer to more effective treatments for patients, stronger international collaboration, better access for patients, and, ultimately, a cure!

From L to R: Dr. Keith Flaherty, Massachusetts General Hospital Cancer Center, Dr. Mario Sznol,Yale Cancer Center, Dr. Howard Streicher, National Cancer Institute, Dr. Takami Sato, Thomas Jefferson University Hospitals, Dr. Poulam Patel,The University of Nottingham, and Dr. Richard Carvajal, Memorial Sloan-Kettering Cancer Center


The battle was lost, but the war must go on until a cure is found.

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Anonymous's picture
Replies 1
Last reply 11/21/2013 - 5:15pm
Replies by: Molly- CURE OM

Hi Everyone!

It is hard to believe that the 2014 CURE OM Eyes On A Cure Patient and Caregiver Symposium is just 3 1/2 months away! Our planning committee is busy constructing an educational and enjoyable symposium. CURE OM continually strives to bring you the most up to date information, as well as cover the educational topics that you as a community want to see covered. 

We want to hear your input, as the OM community. It is because of this reason that the Eyes On a Cure 2014 Steering Committee constructed this very brief 5 question survey. Please take a few minutes to complete this survey so we can continue to provide you with the information that you would like to learn about.


Thank you!

The battle was lost, but the war must go on until a cure is found.

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Hi everyone!

CURE OM is proud to announce the 3rd Annual Eyes On A Cure Patient & Caregiver Symposium. The upcoming symposium will take place at The Hotel Palomar in Los Angeles, CA. The dates of this symposium are March 1 - 2, 2014.  For more information you can click here:

If you have any questions please contact

We look forward to seeing you there!


Molly- CURE OM

The battle was lost, but the war must go on until a cure is found.

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lak's picture
Replies 2
Last reply 10/25/2013 - 2:06pm
Replies by: Shelby - MRF, lak

I am looking for ideas on questions that newly diagnosed eye pateints should ask their ocular oncologists- suggestions please


Then what one should ask one s liver surgeon


questions for interventionsis


questions for oncologist.


Please all think what would be good questions we should ask



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Molly- CURE OM's picture
Replies 3
Last reply 10/24/2013 - 3:20am
Replies by: Anonymous, Chris Jordan, ThatHomeschoolDad

Just wanted to let everyone know that the CURE OM forum will be hosting a Q & A session with Dr. Harbour on Wednesday 12/5/2012 from 9am EST to 9pm EST.  Post your question on the forum and they will then be forwarded on to Dr. Harbour.  Answers to the questions will be posted on the forum on Monday 12/10/2012.  Also, don't forget about the CURE OM facebook page, that can be found at the following link.

Here is the link to Dr. Harbour's segment on CBS Sunday morning.  While yes, the segment was short and geared more towards genetic testing, we must keep in mind that OM was on a national news show.

The battle was lost, but the war must go on until a cure is found.

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New research focused on ocular melanoma is being presented today at the American Society of Clinical Oncology (ASCO) meeting-- research showing the first systemic treatment to have an impact in metastatic uveal melanoma... here are a couple links to articles about the research that came out today at the ASCO meeting:


Warms Regards,

Sara - CURE OM

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Replies by: lak

We're at md anderson and I think they're going to try to treat my husband's metastic ocular melanoma with revlimid and sorafenib.  Has anyone heard of these or have taken them for metastic om?  Please help.  Margaret

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sunnybunch's picture
Replies 8
Last reply 8/17/2013 - 1:44pm
Replies by: lak, NameMax, Anonymous, Chookapa

My brother has been offered a clinical trial for AEB071 at Dana Farber.  Has anyone with metatastic ocular melanoma tried this drug on a different clinical trial?  If so what were the side effects and was it successful?

Thanks, Anne

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This question was posted on the CURE OM Facebook page today, and I thought it was worth reposting here.  

Even though they share the name melanoma, there are many differences between ocular melanoma and cutaneous melanoma. How do you educate others about the differences?

One great way is to direct them to the CURE OM web page where these differences are highlighted:

The battle was lost, but the war must go on until a cure is found.

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Jinx's picture
Replies 9
Last reply 7/29/2013 - 4:45am

I had my first Yervoy infusion on Friday (2/1) and actually had a side effect not from the Yervoy but from the Benadryl they gave me pryer to the infussion. Belive it or not I have never taken Benadryl in any form. Aside from this cancer, I really have never been one to get sick. The last time I was sick was about 15 years ago when there was a bad flu hitting.
Anyway...I started feeling very strange and felt like I was going to pass out, but not really dizzy. It was like a hyper anxioty about something about to happen, alone with a feeling I was going to pass out. My blood pressure dropped from 120/72 to 88/65. They opended the iv and flushed my vein. It fianlly went away after about ten minutes. 
Anyone else here have this happen? If so, did they use something other than Benadryl before the next infusion/

The only side effect I had from the Yervoy (if it really was one) was a few back to back adrenalin head rushes later that night. I was a little bit slow to get going the next day, but have felt fine since.


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Hello everyone, 

I wanted to remind you about tomorrows free webinar titled Ocular Melanoma Survivorship: Living with the Psychosocial Impacts of OM.  The webinar takes place tomorrow afternoon from 4pm to 5pm EDT.  Registration is required, and remains open.  Please click on the following link to register for tomorrows event.

If you are unable to participate during this time, the webinar will be recorded and posted on the CURE OM webpage at a later date.  




The battle was lost, but the war must go on until a cure is found.

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