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. In addition to this forum, you can also visit the main discussion board on the Melanoma Patients Information Page (MPIP) and join the community on our CURE OM Facebook page.

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

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Matt123's picture
Replies 1
Last reply 6/7/2018 - 11:35pm
Replies by: Elizabeth McBride

Hey guys, I’m new here. So i got this mole on my skin located in my right rib area and it’s it is itchy. It’s not itching me all the time but it’s itching me enough to just ask if it is a reason for worry.

I will atrach couple of images of the mole bellow, and my basic info is: 20 year old male.

https://m.imgur.com/a/Ulow8

Let me know if it’s a reason to worry or not, also feel free to ask me any additional questions.

thanks.

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both eyes open's picture
Replies 4
Last reply 6/7/2018 - 11:31pm

I was diagnosed with ocular melanoma H 5mm, W.11.5mm and 12.12mm, on 7/2017, scheduled for plaque insertion 8/4 and 

6 days in hospital. I would like to hear from someone who has had this procedure so as to better 

understand the immediate post -op manifestations, such as vision, pain, comfortability etc.

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fruitloop60's picture
Replies 3
Last reply 5/7/2018 - 12:14pm

First, I was told I had ocular (chroid) melanoma then yesterday another "expert" said "No, it's just a "blood blister". Yet, nothing has occurred to ctreate such a thing. I don't trust it. I can't even search a blood blister; as an eye disorder it does NOT exist. Any thing you know?

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Jamie1960's picture
Replies 0

To date, I have had three WLE for known cutaneous melanoma, all with clear margins. I was disturbed when my optometrist pointed out a "CHRPE" during a recent routine eye exam.

Prior to moving to Maine from Baltimore, my previous regular eye exams had been done by an opthamologist at the Johns Hopkins WIlmer Eye Institute; gievn the doctor's reputation, I believe he would have found this condition i a prior exam.

My understanding is that ocular and cutaneous melanoma are entirely different / unrelated, but would welcome insights from anyone regarding "chirpees" as these seem to be called.

Thank you

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Anonymous's picture
Anonymous
Replies 0

I wanted to share the history of my wife's OM in hopes that folks read it and see that statistics are just numbers and being strong and hopeful goes a long way towards healthy life.

She is 46 years old.  Asian with fair skin and light color eyes.  Just emphasizing that because having OM in her case is a real rarity. 

First diagnosed in left eye in 2001 and treated with a plaque.  No health issues.

Metastasis to liver in 2011 without any symptoms.  Discovered only because of routine scans (Please have routine scans ).  Resection of part of liver with good margins followed by Yervoy.  She developed severe colitis after second dose of Yervoy and it had to be discontinued.

No health issue until October 2017 with melanoma causing compression fracture of T4 vertebra.  She was going through routine scans.   However, spine looked fine in July scan but fracture happened in October, so tumor must have spread really fast. 

She just went through a major back surgery to remove tumor and reconstruct that area of vertebral column.  Will be given radiation, followed by immune therapy (Keytruda + Opdivo) at University of Michigan, Ann Arbor.

I believe that long healthy survival period a direct result of a very positive attitude.  She is going into the new phase now with same positive attitude.  

I understand from her Oncologist , a very intelligent doctor, Dr. Christopher Lao, that her melanoma may have been behaving differently than most OM's.  We are very hopeful for prolonged survival.

Couple of interesting observations:

She says that she has observed and felt irritation and sometimes pain in her eye when she was 16 or 17 (please get checked)  Then it (pain / itching) disappeared for a long period of time until first time discovery of OM which was more of an accidental in nature (she went to Optometrist complaining feeling difficulty reading).

Stay strong..

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wendyrlandry's picture
Replies 6
Last reply 8/29/2017 - 1:34pm
Replies by: Anonymous, Mimi1974, TomJ6299, 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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hopeFlorida's picture
Replies 1
Last reply 7/6/2017 - 11:41am
Replies by: kaileetutt

I've been out of the loop for the past year while dealing with the mets to my liver and was wondering what the new latest greatest trials are out there?

I've completed 3 Opdivo + Yervoy treatments and about 6 months of Opdivo only. My tumors are stable now for about 18 months, but I am worried they will either continue to spread or start growing again. I cannot get them removed as they are small and scattered.

Any new news would be very helpful! THANK YOU!

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betsyl's picture
Replies 1
Last reply 5/26/2017 - 10:55pm
Replies by: hopeFlorida

Hi all,

My husband's skin has started to itch now that the weather is getting warm. I've heard that moisturizer is good to use, but he doesn't like the greasy feel of lotions. Would it make sense to use antihistamines? Is the itchiness caused by a histamine response? He doesn't want to ask the doctor questions like this, doesn't want to be a bother..

Lately he's really feeling the fatigue. Plus he has some knee pain, which he's never had before. His mood is pretty down, which is understandable. Today he was morose. Maybe he should get counseling..I don't know.

He wants to go to his appointments by himself without me. Is that a common thing?  Maybe I'm getting on his nerves. (shrug)

The good news is he gets his fourth infusion tomorrow, which means he's almost half-way done with the 6-month course. The even better news is that the visible subcutaneous lump has melted away. 

He should be getting a scan soon. We'll find out tomorrow when. Keeping fingers crossed for good news.

We've been married for almost 17 years. I'm not willing to settle for less than 30. Ha ha.

-Betsy

 

 

 

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Anonymous's picture
Anonymous
Replies 0

Hi All, I just want to ask if anyone ever tried using medical cannabis as an alternative meds? I have read many articles about medical marijuana and how it can help you in terms of chronic pain, glaucoma, eating disorder/anorexia, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this article about a marijuana strain hash plant. Cbd and thc are also new to me and I don't even smoke. If this is true I cant find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks

Liang Chen

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Anonymous's picture
Anonymous
Replies 0

Would anyone consider this an conjunctival tumor???? Waiting for results from the biopsy

https://goo.gl/photos/ohPqyXwSWivV9ofn7

Jenn

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Anonymous's picture
Anonymous
Replies 0

Would anyone consider this an conjunctival tumor???? Waiting for results from the biopsy

https://goo.gl/photos/ohPqyXwSWivV9ofn7

Jenn

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/25/2017 - 7:10am
Replies by: SueGeorge

All-in-One CRISPR/Cas9 KO Kit is a highly effective and accurate gene editing kit which is based on the latest artificial endonuclease CRISPR/Cas9. All-in-One CRISPR/Cas9 KO Kit is applicable to modify genes in almost all kinds of mammalian cells.

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/25/2017 - 7:05am
Replies by: SueGeorge, TeoFriendly

Does anyone have this or know of someone.

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Anonymous's picture
Replies 2
Last reply 1/25/2017 - 7:03am
Replies by: SueGeorge, DawnG

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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