CURE OM Forum


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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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.

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wendyrlandry's picture
Replies 3
Last reply 5/17/2015 - 9:40am
Replies by: 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?

Thanks!

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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: http://www.melanoma.org/get-involved/calendar-of-events/eyes-cure-patient-caregiver-symposium

If you have any questions, please email cureom@melanoma.org

Best,

Molly

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

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I'm hoping to touch bases with others who still struggle emotionally and physically following enucleation.  I'm almost 7 months post-enucleation related to Choroidal Melanoma in my left eye.  The tumor was large and the only treatment option was enucleation.  I've since seen an ocularist and had a prosthetic made, but am unable to wear it due to how painful the prosthetic is.  I've instead opted for comfort and wear my conformer instead. 

I feel that emotionally, things have gotten better over time - but I still struggle with losing my eye and the way that I look now.  

Initially, I adjusted to monocular vision better than I had expected.  I still drive - but only to surrounding small towns and never on the highway or in bigger cities.  In the small towns, I know my way around well and can get away with not having to change lanes (merging into the left lane is very scary for me since losing my left eye).  My biggest complaint physically is that I'm more sensitive to light with my right eye.  For instance, the glare off the snow gives me headaches - even in the house.  I have been experiencing a lot of headaches over the past few months and some of them start whenever I'm around bright light.

It's strange - I need additional light in order to see properly in the kitchen or at my desk.  But I also can't handle bright lights as they make my head hurt around my right eye.

I work from home on a computer - which requires me to be at my computer much of the day.  Prior to my OM diagnosis, I was always near sighted with astigmatism and needed glasses for seeing far away (like watching television).  My glasses would also help me when looking at my computer monitor and reading text on the screen that was more difficult to read without them.  Now, after enucleation, my glasses don't help me with seeing the text on my computer - everything just looks fuzzy.  My glasses do work otherwise, though.

I have a follow-up appt with my eye surgeon next week and will address the vision changes with her.  I'm just curious to hear from others who still have emotional and physical issues after enucleation.

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Replies by: joelcairo

have seen retinal vitreous Dr in home Pittsburgh   /  all they are offering is 'plaque' temporarily attached to my eyeball --  Radioactive 'seeds' =  Brachytherapy? OR certain Death  -- { all I wanted was a New pair of eyeglasses :(  } -

At Least they Found this in time' -  thoughts anyone?  

PS internet research demonstrates NEWER  trends in Systemic Immunotherapies -  appreciate any info . . .  other than Radiation in my 'Mostly Good' eye! 

 

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Hi Everyone, 

I wanted to take a brief moment to let you know that CURE OM is conducting a brief needs assessment survey. This survey was constructed to hear the voice of the OM community. To make sure that the needs of the community are being met in the best way possible. Please take a few moments to complete this survey and to share it with the rest of the OM community! 

https://www.surveymonkey.com/s/BKMM7JV

Thank you!

 

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

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Dear All, 

I wanted to take a quick second to let everyone know that registration is now open for the upcoming Eyes on a Cure Patient & Caregiver Symposium. This event will take place back in Philadelphia at Thomas Jefferson University in the new Dorrance H. Hamilton Building. You can find draft of the agenda, as well as hotel room block information in the link below. 

Looking forward to seeing everyone in Philly!

Best, 

Molly 

http://www.melanoma.org/get-involved/calendar-of-events/eyes-cure-patient-caregiver-symposium

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

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Molly- CURE OM's picture
Replies 2
Last reply 3/4/2015 - 8:32am
Replies by: scamglob7, tarpid25

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:

http://www.melanoma.org/get-involved/calendar-of-events/wings-hope-melanoma-gala-philadelphia-0

 

Questions? Email galas@melanoma.org

Best,
Molly

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

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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? 

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Anonymous's picture
Replies 1
Last reply 10/8/2014 - 12:42am
Replies by: joelcairo

I was diagnosed 9/19 with uveal melanoma. The doctor wants to do the full check up and tests to see if its spread. But we noticed the tumor (or my husband did) late may. It went from non existant (atleast that WE could see) to pretty big over night. I waited until august before having it looked at (I dont like jumping to conclusions and freaking out right away). From late may to today its about tripled in size. Doc says its taken over about 40% of the eye.

Anyways. My question is if its spread to other parts of my body (or even if it hasnt spread) what tolls could I notice it taking on my body? Example like overly tired. My menstrual cycle is very off and has been lasting twice as long as my normal cycles. My joints hurt (mainly knees). But im most annoyed with the period. Is this something I should bring up to my cancer specialist and ask if he can check out hormone levels when he does the other tests (like if he says its not associated with the cancer in any way)? Should I see my regular family doctor? My concern with that was she will be clueless as to what may or may not be cancer related...

Has any one else expierenced anything similar?

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magrebecca's picture
Replies 1
Last reply 10/23/2014 - 12:13pm
Replies by: Shelby - MRF

My husband was just diagnosed with stage 4 mucosal melanoma in my maxillary. On Aug 22 2014 he had surgery for what we thought was just a sinus infection but turned out to be stage 4 mucosal melanoma. His ENT said he removed as much of the mass as possible and referred us to an oncologist. We seen the oncologist today, who basically said, there is nothing I can do for him. He is now referring him to UCLA to see if there is something that can be done for him there. He had an MRI and it did not show that it has spread. I feel so helpless at this point. I am feeling like he has been given a death sentence. Are there any stage 4 mucosal melanoma cancer survivors?  

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Hello,

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.

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I recently was diagnosed with a cilliary body melanoma and had radioactive plaque therapy earlier this month. I opted to have genetic testing done but I'm not entirely sure I understand what those results will tell me. Can anyone explain? I will get my results August 28, 2014 and want to be as prepared as possible.

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Replies by: joelcairo

I opted to have a needle biopsy for Decisiond -UM testing prior to having the radiation plaque implanted in early May 2014.  

Can anyone tell me the cost of the testing?  And did you have problems getting insurance to pay for it?

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degood's picture
Replies 2
Last reply 5/31/2014 - 2:21am
Replies by: joelcairo

My husband had a 4 mm melanoma removed from his back in Nov. 12. They could not get dye to go to lymph nodes so they done a pet scan and found nothing. End of Jan. this yr. he started to have vision problems, flashing light etc. We went to an eye specialist who has termed it as a suspicious chroidial nexus and is watching it, we go back in June for check-up. The eye specialist also said this has nothing to do with the melanoma from his back, that even though it is called an melanoma it is totally different than the skin type. Looks etc. In the meantime, he has developed 10 new little places on his skin and one inside his lip. We went to a new dermatologist yesterday who said that the melanoma has spread including his eye! He took a biopsy of 3 places which he says he is positive it is melanoma!! He kept saying things like no use to put him through the eye treatment, mentioned chemo, brain scan, lung scan. Had a hard time understanding him and he acted like a robot or something.  He just had an exam in Feb. at the surgeons office no lumps lymph glands chest x-ray Ok, even took him out to 6 mo. visits, as he was doing pretty well. His liver test was high so they took him off cholesterol medicine and told him no more aleve as they will raise liver function test and last blood test it had come down slightly.  The new guy really was very negative I even asked so you are saying there is no hope for him, his reply I didn't say that. Then why is there no use to put him through treatments? I am extremely upset and very very scared.

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