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.

Expand/ Collapse Topic
Replies By
View Topic
Anonymous's picture
Replies 2
Last reply 2/8/2016 - 3:46pm
Replies by: Adam-MRF, TeoFriendly

So my life has been on standstill for the moment due to melanoma. i just found out today that I have melanoma. I have the copy of the report and the specialist said that it is very early, thin, and easily curable. I have the melanoma on my scalp. The report states "pT1a, mitotic rate is 0 per mm sq. and it is 0.30 mm thick." I am effing scared. The survival rate, I was told was very high, but since it is locate on the scalp, my fear is brain cancer. I will see my derm again tomorrow for a full body skin check, and I will see a physician for an annual physical. I will tell the derm many questions, and I will ask the regular physician to draw blood out for any signs of cancer, and I will do like CT Scans, MRI's, just to be safe. The specialist said it has not even spread. But I want to be safe. I am still hella scared out of my mind and obsessing about a blurry future.I am a full time University student, and healthy. Sorry if I am overreacting, but I am scared. Coming from personal stories, is there a chance that this melanoma would come back, and eventually spread? If so, what is the survival rate?

Login or register to post replies.

Vrsomerset's picture
Replies 1
Last reply 2/8/2016 - 3:33pm
Replies by: Adam-MRF

I was disgnosised with chorodial melanoma 2 weeks ago and had plaque therapy last week.  My regular eye doctor is excellent and has been keeping a close eye on the nevus for years.  It was removed this past Monday.  I'm being treated at the Wills Eye Hospital in Philadelphia.  I'm very scared that I may lose my eye and of the cancer spreading.  I had the biopsy done but don't have the results yet.  The tumor was small and they say the results of my treatment should be good.  There's not much information out there to read up on and I have no one to talk to about my fears and how they've made out.  Any help and info from other CM folks is appreciated.  Thank you, Vicki


Vicki spisso

Login or register to post replies.

Molly- CURE OM's picture
Replies 5
Last reply 2/3/2016 - 11:58am

Hello everybody, 

I wanted to take a minute to let everyone know about the upcoming 2nd Annual Wings of Hope for Melanoma Gala in Philadelphia at the National Constitution Center. This event will take place on Tuesday, October 28, 2014. 

The Wings of Hope for Melanoma galas are the Melanoma Research Foundation's premier fundraising events. Join the MRF/CURE OM as we recognize true heroes in the melanoma community, raise awareness and much needed funding for melanoma research. In addition to giving the MRF's Humanitarian Award during the galas, Courage Awards are also presented to individuals who have shown tremendous strength in their battles with melanoma. 

This year, Carol Shields, MD, Co-Director of the Oncology Service, Wills Eye Hospital and Professor of Opthalmology at Thomas Jefferson University and Meenhard Herlyn, D.V.M., D.Sc., Caspar Wistar Professor in Melanoma and Director of the Wistar Institute Melanoma Reasearch Center will be awarded for their outstanding medical advances with the MRF's Humanitarian Award during the gala. 

You can find more information about this event here:


Questions? Email


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

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 1/30/2016 - 6:34pm
Replies by: TeoFriendly

Does anyone have this or know of someone.

Login or register to post replies.

stemat2's picture
Replies 2
Last reply 1/20/2016 - 12:36am
Replies by: Jessica666, ljohnston


I know that my question is probably impossible to answer, I know what's melanoma like, that every single patient reacts differently, so I am rather looking for advice and tips that could be useful for our decision.
Long story short, my father was diagnosed in November last year, when he had two operations. After that, he had no therapy and by the end of January, mets spread to the whole body(it happened really quickly, in two weeks maybe). All that happend, because doctors promised him to enter clinical trial, but delayed the process, apparently on purpose, until mets appeared, so he became uneligible for the trial - which eventualy made us buy Zelboraf on our own, as we live in freaking Serbia, where advanced melanoma is not treated at all, except using chemo, which is ridiculous in my humble opinion.
Now, after 5 months of Zelboraf therapy (which was btw really efficient, he responded better than average), tumor markers are rising again from day to day, and I think we will need a new option very soon. We heard about TIL in Manchester, it's cheaper than in usa and Israel, so we might get money for that, and are considering that option. Second option is to start buying Keytruda, we would be able to collect funds for 6-7-8 months maybe. Tricky part is that, whatever we choose, it would leave us with no money, in deep debts, and without chance for further actions, so this seems like a really hard decision. There is third option, as we could get antiPD1 for frer here if my father goes through Ipilimumab treatment first, but it is really hard to find trials for ipi, and it is way to expensive for us to buy it.

In the end, just to add that we also considered going to Israel, Tel Aviv, to Ella Clinics on Sheba Medical Center (dr. Schachter), because we heard that they are really good in Melanoma treatment, but are unsure of therapy prices there. I know that TIL there is around $200,000 and that is out our league, and cost of one doctors examination is around $5000, which is also a lot. However, I have heard that they are willing to find clinical trials for their patients, and that you can go there every 3-4 weeks and pay just for examinations/consultations, but I don't know if it is true.

If anyone has any advice on what to do or not to to, what to take into consideration, it would mean a lot to us.

Login or register to post replies.

wendyrlandry's picture
Replies 4
Last reply 12/19/2015 - 1:42pm
Replies by: TomJ6299, Anonymous, PamDeCicco, joelcairo

Hi! I was diagnosed yesterday with Choroidal Melanoma. It was a complete shock! I went to my eye doctor on Tuesday for my routine eye exam. When he dilated my eyes he saw something that "caused hin great concern" on my right retina. He thought I might have a detached retina and scheduled me an appoinment with a retinal specialist yesterday.  the retinal specialist did the dye/photo test as well as an ultrasound. He then looked at me and broke the news. I was devestated!

I now have an appointment with 2 specialists in Memphis, TN on March 17. (I live in Louisiana) I'm super nervous and scared of losing my eye. He did not tell me if it was a small, medium or large tumor. I am having MRI and CT scans done today in preparation for my appointments in Memphis.

I have two small children and the thought of not being able to see their beautiful faces with full vision is depressing. The docotr I saw yesterday seemed hopeful that this will be able to be treated with the plaque radiation and that i would not lose my eye. Fingers crossed he is right.

Can anyone give me some insight from a patient's point of view? What is in store for me?


Login or register to post replies.

TomJ6299's picture
Replies 20
Last reply 12/19/2015 - 11:29am

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

Login or register to post replies.

threeaces97's picture
Replies 2
Last reply 12/1/2015 - 10:44am
Replies by: threeaces97, gregor913

I'm stage 3c, and just recently completed a 4 month clinical trial.  PET scan show 4 new cancer filled lymph nodes.  Met with one surgeon today and another one tomorrow, along with m y oncologist.  Lymph nodes are in a tough location (upper axillary (armpit) and surgery could result in lymphedema and/or nerve damage to my right arm.  DR. is recommending a combination of Yervoy and opdivo IV TX over the next 12 weeks.  Looking for anyone that has gone through this.  Thanks    Mike

Login or register to post replies.

Dear MPIP Community:

We are doing some research into support groups for patients diagnosed with rare subtypes of melanoma - ocular and mucosal. If you have been diagnosed with ocular or mucosal (including acral) melanoma and would like to help us, please fill out the survey HERE. It should take you less than 5 minutes to complete. Thank you in advance for your feedback!


Shelby - MRF

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 10/11/2015 - 2:05pm
Replies by: geriakt


This is my first time posting here.  I'm a biologist who is researching uveal melanoma.  I have my PhD in biomedical sciences and did a postdoctoral fellowship in a cancer biology lab.  I have made an animal model of the disease and I am trying to understand the signals that activate tumors and allow them to become more aggressive and capable of spreading to other organs.

I am wondering if all of you have a favorable view of biological research for this disease?  How do you feel about using animals for research?  I am sure that you may know that samples from patients are limited now with the development of improved therapies.

Would you consider donating to help a biologist set up their new lab and continue investigating the pathways that activate this cancer type?  I am just starting a professor position at a new school and I am trying to start up my lab on limited budget.  Online crowdfunding seems to be one way to fund scientific research these days, and I'm just testing the waters here to see if patients with uveal melanoma are receptive to that approach.

Login or register to post replies.

Just wanted to say hello to everyone. I have not yet had the results of biopsy but it seems certain that it is melamona. What is so awful is that I went to the doctors about this particular mole a few years ago and she told me that there was nothing to worry about so I did not take a lot of notice of it, but when a friend saw it a few weeks ago she advised me to see a doctor again which I did and this time my own doctor was not there - she was just as useless when I delveoped cancer of the womb -  and the diagnosis of cancer of he womb took up my time instead of concentrating on the mole on my leg I then had to concentrate on another cancer and I suppose what with having PAT TECS I thought if I had any cancer anywhere it would show up but I still did not thing anythihg about the mole on my leg.


I had it removed yesterday and so am waiting for the results. The Dermatolgist seemed to think that it was Malegnant Melanoma so I am not holding out much hope of it being anything else and I feel just terror also because I had it such a long time!


Just wanted to say hello anyway.

Login or register to post replies.

If you are able, please help my father to get a chance to fight melanoma, details can be found on the following link:

Login or register to post replies.

Thank you Sarah and your team for an awesome conference.  Full of info, and meaningful connections with other OM friends and family.  God bless your work.

Login or register to post replies.

Hello everyone!

I wanted to remind you that the 4th Annual CURE OM Eyes on a Cure Patient & Caregiver Symposium will take place in Philadelphia, March 6-8, 2015 at Thomas Jefferson University. We are looking forward to this year's symposium as there will be presentations from some of the leading ocular melanoma physicians and and CURE OM funded researchers. As always, this event is free to attend, but registration is required. 

We currently have a block of hotel rooms reserved at the Philadelphia Marriott Downtown at a discounted rate, however,  the block will expire on Friday, February 13! 

You can read more about this event here:

If you have any questions, please email



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

Login or register to post replies.

Bulldogs81's picture
Replies 2
Last reply 2/8/2015 - 6:30pm
Replies by: john243, Molly- CURE OM

On 9/16 I had a mole on my forearm. On 9/24 my derm called and said it was melanoma in situ. She said that she sent it to the university of Chicago for a second opinion, who agreed it was in situ. She scheduled me for an appt for a wle the following Monday 9/29. I went, and the surgeon seemed to have taken a big chunk of my arm out. The scar is about 3 inches long and looks like skin its drooping inward.


Anyhow, a nurse from the surgeons office called today with the results. She said that the results came back today from wle and that it looks like they are going to have to a second excision. I was at the grocery store and caught off guard, because I was not expecting bad news and was so shocked that I did not ask a lot of questions. They wanted me to come in this week for second surgery, which is not possible for me so I go next monday. 

I called my derm so she could explain it to me and am waiting for a call back. I am so confused. Does this type of thing normally happen? Or does it mean the original diagnosis of in situ was incorrect? 

Login or register to post replies.