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.

Sharing my wife's OM history

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.

ocular "blood blister" - misdiagnosis????

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?

Ocular Melanoma stage 2a

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.

2017 Clinical Trials?

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!

Medical Marijuana?

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.

Conjunctival tumor?

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

https://goo.gl/photos/ohPqyXwSWivV9ofn7

Jenn

Conjunctival tumor?

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

https://goo.gl/photos/ohPqyXwSWivV9ofn7

Jenn

Keytruda--itchiness, fatigue, joint pain kicking in

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.

Dosage. SBRT in spine L2.

Dear all,
I have the following question to community:
I have melanoma (Braf mutation) and now I have metastasis in spine L2.
Doctor has advised to make Stereotactic Body Radiation Therapy (SBRT) in L2
with the following dosage : 5 fractions with 4 Gray per fraction (20 total)
From my searching via internet it’s not enough in case of melanoma, I mean dose per fraction and total dose.
Did someone have that experience with radiotherapy in spine?
Pls advice

diagnosed new invasive melonoma

Recently diagnosed with melonoma. It has been removed however tumor was 4.7 mm mitosis was 7 not ulcerated and margin cleared by 0.3 mm. Seen oncologist and had fine needle as I have swollen node and shows cancer from pathology report. Nov 4th under going wide excision to clean up neck get more margin and SLN biospy removing all nodes on left side of neck where original melonoma detected. Well I am scared. My name is Lisa 3o have a family and now after this I have just stopped everything. Depressed anxiety you name it. My biggest fear is dying funny I work as a personal support worker.

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