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.

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My name is Margaret Rogers.  My husband was diagnosed with om in Jan. '06.  He was plaqued in Mar. 06.  The plaque surgery ruined his retina and as a result he had his eye enucleated in fall of '06.  He was scanned every 6 months with ct of ab. and lungs.  Mets showed up in Dec. '10 almost 5 yrs after om.  We went to Emory in Atlanta and saw an oncologist and Dr. Kevin Kim, an interventional radiologist.  Dr. Kim recommended ablating the largest tumor (1.8 cm.) by the time he ablated it(just a month later) it had grown to over 4 cm.  That ablation was successful and Dr. Kim recommended resection.  My husband, Butch, had resection in April'11.  Scans showed very small tumors by June.  We opted for a multisite trial that had a leg in our hometown of Chattanooga, TN.  My husband had 4 doses X 10mg. of yervoy and( gm-csf self injected shots) on days 1-14 of each cycle.  He was able to have 1 maintanence dose of 10mg of yervoy and gm-csf shots after regular cycle.  He had very little side effects--a little fatique on the first couple of days after infusion of yervoy and whelps and an itchy rash after gm-csf.  He was scanned again in Dec. '11.  This scan showed a few new mets in liver and growth of the largest tumor from 5mm to 11mm in 6 months.  Much slower growth than before.  We then movedback to Dr. Kim & on to y-90 in Jan.'12 for rt. lobe and mar.'12 for left.  We were scanned again April 23 about a month after left lobe. Liver mets were still in turmoil as we had read, heard, and researched.  3 small mets showed up on spine behind liver.  We are anxious to know what to do for that.  Chattanooga says chemo(which we're opposed to because it's usually so lethal and not very effective), trial, or nothing but wait and see. (really don't want to do any of these.)  Put the question to ocumel and responses were zometa?, external beam radiation, cyberknife, or wait and see.  Has anyone had cyberknife or zometa?  Is there anything more out there to target spine?  Have been in contact with Dr. Jeffrey Weber @ Moffitt about pd-1, but not since spine mets appeared.  Any ideas about how to treat spine mets?  My husband is 66yrs. old and very healthy and active even through all the treatments.  He feels great and you wouldn't know he had these issues.  Would like to find something to treat spine mets b/4  they get big and do cause pain.  Please respond.  Will be @ Philly conference in June, God willing and the creek doesn't rise.  Thanks for your imput, Margaret Rogers

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I was wondering if anyone has gotten this diagnosis? I was diagnosed at stage IV in 2006 and am NED still at 5 and a half years! I know this is probably one of the rarest types of eye melanoma and I know only just a few that have been diagnosed with this. I would love to correspond to anyone that would like to about this subject. There is hope!


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There's an interesting article by Jerome Groopman in the April 23 issue of The New Yorker magazine, about T-cell research and cancer. There's an abstract of it here. It discusses some of the research that lead to the approval of CTLA-4 (Yervoy).

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With the trend of increasingly abundant free online university courses, the
university of Pennsylvania now offers a basic course of 4-5 weeks on
Pharmacology starting in June. See

It may help understand how drugs work in principle and how therapies get
developed and what the future opportunities and current limitations are.

I'm also following this online university course myself to become a better
talking partner for my doctors.


Peter L in NH

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abrown's picture
Replies 7
Last reply 4/15/2012 - 4:27pm
Replies by: abrown, Sara - CURE OM, Anonymous, edamaser


I wondered if anyone as experinced multiple family members with OM?  My son was born with and Iris nevus in 2007 and was seen by and Ophthamologist a couple of weeks later.  The doctor told us at the time they were common and we would keep a close watch on it because they have the potential to turn malignant. 

At that time my sister had a spot in her eye that I thought she should get checked out because it had started to get visibly larger, and because of what my sons doctor had told me she should be watched also.  She has been monitored every year since then and more often recently when it appeared to have grown last year.  She has been seen by a couple of oc. oncologists.

Last July I started seeing a flashing light in my right eye and went to see a local Oph.  He believed that it was a hemangioma and sent me on to a retina specialist.  The retina specialist believed it to be choroidal melanoma and sent me on to a ocular oncologist.  The oc. oncologist has been monitoring my lesion since then, and it wasn't until my appointment last week that it showed growth with sub-retinal fluid also.  I will be getting my lesion treated with plaque therapy.

I wondered if there were any other families with similar situations.  My oc. oncologist recommended that my son be watched closely also, so he had his first documented pictures yesterday by a local oph.  If anyone has been in a similar situation I would really appreciate any information you can give about this seemingly familial link.

Thanks so much,


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Dear All,

I want to let you know about a every exciting upcoming event...

Join us on May 6 in Los Angeles for Miles for Melanoma on the Universal Studios backlot-- a 5k run/walk.  This will convene at Universal Studios Hollywood to help raise critical awareness and funding needed for new treatment breakthroughs.  Along the route, participants will see iconic movie sights, including the Bates Motel, sets from Jaws and Back to The Future, and the village of Whoville!

We want to form a specific CURE OM team to participate in this event to raise awareness about OM and also to raise much needed funding specific to ocular melanoma.... if you are interested in being a part of the CURE OM team, please post here or email

We look forward to seeing you in LA and working together to raise awareness and funds to find a cure for ocular melanoma.

Warm Regards,

Sara - CURE OM

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Hi all,

I am attending the symposium and am wondering who else is attending. I am looking forward to meeting other Ocular Mel warriors! I am hoping to go to Friday's Meet and Greet, but my plane is arriving at 5. Hoping to go and maybe we can have some dinner together!



Every day I wake up is a gift!

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RuthG's picture
Replies 10
Last reply 4/6/2012 - 12:44pm

Hello -

My partner has just been diagnosed with uveal melanoma. He's scheduled to have an eye removed day after tomorrow. He might join this forum after he's had the surgery, but right now he's got other things on his mind.

I'm very glad to find this group. He's been able to talk with a couple of people who have lost an eye, or lost vision in an eye, as adults. But we've never heard of OM before, and we don't know anyone who is experiencing the same thing.

We're very lucky that we live not far from Philadelphia, and he was tested and diagnosed at Wills Eye Institute. The surgery will be done there as well. That's one of the things thats helping both of us right now -- knowing that Wills is an excellent place to be if you have this particular problem.

We've already signed up for the symposium in Philadelphia in June. I hope we'll get to meet some of you there.

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Nan in Nebraska's picture
Replies 1
Last reply 4/6/2012 - 3:15am
Replies by: Sara - CURE OM

Hello All,

Well, I had my first re-induction infusion of Yervoy yesterday. I will have 4 cyberknife treatments to the lesion between my stomach and spleen. My oncologist did speak with a colleague of Dr. Wolchok's and his recommendation was to do cyberknife between the first and second infusion. So praying and keeping my fingers crossed for the "abscopal effect".

I'm looking forward to the symposium in June. If everything goes as scheduled, my last infusion will be June 6th. :)


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TomJ6299's picture
Replies 5
Last reply 3/21/2012 - 12:14pm

I went to an Ocularist in New Orleans who I wont name on 3/8/12, I'm not thrilled with the eye. At 8 weeks from enucleation I was ready for my prosthesis, he put me off a month because of Mardi Gras. During that month, I still had my conformer in from the enucleation, I could literally feel my socket area shrinking and sinking in. The prosthetic eye is in, upper lid hangs a bit, the prostheses looks quite a bit smaller than the other eye, it also looks like the whole eye area is lower than the other. The eye has been full of crud or whatever u call it each morning. Im so unhappy, no one told me that putting off the fitting for a month would cause the socket to shrink and sink. Friends and family just say it looks like a lazy eye, and not bad at all. I go back in 2 weeks for adjustment. I looked at pictures of people with prosthetic eyes, most perfectly match the other eye, I believe I got the bottom of the barrel as far as Ocularists go

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Please join us for a free teleconference on April 12, 2012 from 8-9pm EST. The topic is "When Mom or Dad has Melanoma" and will be hosted by Dr. Fran Lewis from the University of Washington. Don't forget to register! 

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TomJ6299's picture
Replies 18
Last reply 3/11/2012 - 3:36am

Hi ! My name is Tom fontenot , I was diagnosed with Choroidal Melanoma Friday, the last 2 days have been like a nightmare. Im 49 and never have been sick, my vision is screwed up, didnt sleep Friday night but rested well last night, Today I seem to have some peace, guess im getting used to it already, any feedback will be greatly appreciated

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Next week, will be undergoing maintenance to improve site functionality. To make the process smoother, we want to alert you that the forums will be unavailable between the hours of 2 and 5 a.m. (EST) on Tuesday, February 7, and that any posts made between 5 a.m. and noon that day may not be captured in the transition. Thanks for your understanding! 

Shelby - MRF


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Sara - CURE OM's picture
Replies 6
Last reply 1/3/2012 - 10:10am

Dear All--

Thank you for joining the first CURE OM Community Teleconference.  We threw out a lot of information and only had about 15 minutes for Q&A so please feel free to use this space to ask any additional or lingering questions.... we are here to help answer your questions, and, if it is something we don't know, we can try to find the answer for you.

Also, in case you were unable to join the call in person, we will have the recording up on our website ( soon.  Feel free to ask questions after listening as well...

Warm Regards,

Sara - CURE OM

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Molly- CURE OM's picture
Replies 4
Last reply 12/29/2011 - 1:03pm

Hey everybody!  I was in on the teleconference, but didn't get a chance to ask my question, mostly because I was trying to figure out the best way to ask it.  I really enjoyed listening to Dr. Harbour and Dr. Flarety. 

Here's my question.  My mother in law passed away from metastatic OM in March of this year.  There is a strong family history of cancer in her family.  Her father died of bone cancer, her brother died from either brain or lung cancer, but was also in Viet Nam.  Now that gene mutations have been identified, would it make sense for her siblings and her children to be tested for the same mutations?  Is there even a test out there that is known in the general physican community for them to request? 

I was also so irritaited during the phone conference because there was talk of doing biopsy's of the OM tumors upon diagnosing.  I asked my mother in laws doctor about doing a biopsy and was told "oh no, we don't do that for fear of the cancer breaking out and spreading to other places."  Just goes to prove even more about the lack of education on this disease. 

Thank you,

Molly Stoffa

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

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