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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Nitric oxide (NO) is produced by three isoforms of nitric oxide synthase (NOS) and is a chemical messenger that reacts with free cysteine residues to form protein s-nitrosylation analysis (SNOs). S-nitrosylation is a critical PTM used by cells to stabilize proteins, regulate gene expression and provide NO donors, and the generation, localization, activation and catabolism of SNOs are tightly regulated.

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I am wondering if htere is anyone on this site that has had the immunotherapy comibnation of yervoy and opdivo for ocular melanoma.  I have read posts of skin melanoma with mets who had the treatment, but I am wondering about the eye since I willbe starting that immunotherapy combo soon.

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Anonymous's picture
Anonymous
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I was diagnosed with a medium choidal melanoma in 2001 and had plaque radiation at the beginning of 2002.  From that point forward, the tumor shrunk slowly (which the doctor said was good) and had remained shrunk all these years.  I had appointments for check ups every 6 months.  My liver functions tests were good.  I had a chest xpray and ultrssound of the liver 2 weeks ago.  The chest x-ray was fine.  The liver ultrssound showed something vague and ill-defined on the left lobe of the liver.  So, I had an MRi where they did two different kinds of contrasts (first one was blurry).  That showed some very small spots on the left lobe of the liver.  My doctor spoke with the radiologist before my appt with her, and she said he was unable to determine what they were.  So, now I am havinga pet scan.  I am scared and concened.  I was shocked at myeye cancer doctor's appointment toeven hear there was anything as I feel great and have no symptoms of anyting, other than a nervous sstomach which is something I alwasy get if upset.  Has anyone had anything similar?  HELP!

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interallymotivated's picture
Replies 1
Last reply 5/7/2016 - 12:56pm
Replies by: farmboy wannabe

Hi there,

My question to you is: how did you find out you had OM? Did you notice a spot on your eye, or was it a different experience?

For the record, I am not diagnosed with anything. I am hoping this stays that way. However, 6 months or so ago I noticed there was a spot on the white of my left eye. Never thought much of it at the time. What got me to start thinking was that for months and months now I have been having recurring dreams telling me I have cancer. The dreams have been becoming more direct. 3 dreams involving melanoma. A dream voice saying specifically to me "You have a melanoma."

 

This started making me wonder if this could actually be possibility. So I looked over my moles and such, and scheduled my routine derm appt, which was a month overdue (I am 31, and have to have derm appts every 4 months due to multiple precancerous moles, living in south Florida, and being very fair skinned). I didn't notice any unusual moles, but I did notice that black spot on my eye again. It's the size of a mechanical pencil head. Called my doc, and they completed my authorization to see an eye doctor within an hour. Appts in 2 days. I am really nervous... Hopefully this is just nothing.

 

Thanks for reading. Anyone willing to share their diagnosis experiences?

 

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Mimi1974's picture
Replies 3
Last reply 5/16/2016 - 5:17pm
Replies by: Mimi1974

Hi,

 

I´ve just been diagnosed with chroroidal melanoma one week ago.

It has had a very hard impact on me during the first two days, I just felt like I´m gonna die right away.

I actually went to the doc

For every one, every day could be the last day - just make the best of every single minute :D

´

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My mom is scheduled to begin (in 2 weeks) a clinical trial with Ipi (Yervoy)/Nivo (Opdivo) injections... from what i understand, it's pretty toxic and the side effects are quite severe.  Can anyone attest to this?  Are the side effects as severe as it seems?

Also, just wondering if anyone has tried Adoptive T-cell Therapy instead of Ipi/Nivo?  T-cell therapy seems less toxic and more specific to the individual, given that it uses the person's DNA.  Does it take too long to get this type of treatment set up?  (My mom is Stage IV metastatic ocular melanoma in her lungs).

Alternatively, are IL treatments equally as toxic as Ipi/Nivo?  are those treatments as effective?

Thanks,

Shelley

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Hi 

I'm a newbie here. I was diagnosed with subungual melanoma in 2006 and had to have my toe amputated. I have been clear since, but I have this lump in my groin which has been worrying me. I'm going to see my dermatologist next week. The thing is today, the lump feels smaller, does this mean no need to get checked? As i assume the fact it has got smaller, means it's nothing serious?? 

Thanks xx

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Hi guys ,

My brother did MI profile and he needs to receive Zelboraf or Taflinar. Actually my brother lives in Egypt and he does not has insurance so we can not afford the drug's price. Also the drug does not licensed yet in middle east. Do you still have the extra doses and I wonder if you could help me ? I have all medical reports and the result of MI profile that did in Caris life science Lab in USA. I spend last month searching for any financial assistance program for my brother in USA but they only accept U.S resident .  Note:  live in USA.

 

Thank you , I am looking forward to hearing form you soon.

Mai Said

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Hello, I am based in the UK and was diagnosed with choroidal melanoma on monday - a medium to large tumour. I would like to understand other people's experience of brachytherapy - in particular:

1. what "quality" of eye life people now enjoy post brachytherapy. by which i mean not just % vision (i have been told the surgeon thinks they could save 70% of my vision) but the experience of life - how much maintenance does the eye take, do you see stars or colours v differently, what are the issues with a post brachytherapy eye.

 

2. the risk of complications and what complications people have experienced, My family has a history of glaucoma and retinal detachment in any case (not experienced by me to date)

 

I am 51, fit and otherwise very healthy. I do not yet have the results of the PET and MRI scans done earlier this week.

I don't know whether its possible to talk oh the phone to people who have had this treatment. I am getting a second opinion via phone/email with the Shields at Willseye early next week. 

Thank you very much. 

 

Seaspirit

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Vrsomerset's picture
Replies 2
Last reply 2/12/2016 - 10:57pm
Replies by: Vrsomerset, 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

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Anonymous's picture
Replies 4
Last reply 3/8/2016 - 2:07pm

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?

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

Does anyone have this or know of someone.

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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

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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!

Sincerely,

Shelby - MRF

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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.

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