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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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 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?

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

Hi,

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.

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

http://www.youcaring.com/dragomir-kostic-407622

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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 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?

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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