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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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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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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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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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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Kkincaid239's picture
Replies 4
Last reply 7/18/2014 - 11:03am
Replies by: Anonymous, paperdetective, Kkincaid239

Hello my name is Kevin, I just turned 19 and have been Diagnosed with stage 3A melanoma. I had a Medium Sized Black freckle below my inner eye which Turned out to be melanoma. I've been looking all over the Internet for people around my age and how they dealt with their interferon treatments. I worked part time went to school full time and maintained a fairly vigorous workout schedule before I was diagnosed and went through the three seemingly standard surgeries; melanoma removal, plastic surgery/reconstruction, and lymphnode disection in which they took 54 lymphnodes out of my neck and I'm still recovering from and going to physical therapy for.

Anyway, I will more than likely start interferon within the next week and I would really appreciate if I could get few hints, tips that would help me, or answer a few questions I have. Such as, were able to return to school, work, and excersizing throughout the course of the treatment. How long did the treatments take during the first month? When did you start feeling the side effects? what side effects effected you the most? IHow did the injections compare? Do the injections hurt? I really appreciate anything you guys tell me. Thanks!

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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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ThatHomeschoolDad's picture
Replies 3
Last reply 6/23/2014 - 9:33pm
Replies by: Annie Laurie Smith, Anonymous, paperdetective

Wasn't there a list of OM docs on this site?  I see the generic melanoma map on the left nav, but I thought we had our own.  No?

Renee @ Jeff has a patient looking for an onco near Alabama or Columbus, Georgia.

 

--Tom

Keep Rowing!

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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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Has anybody else ever had an eye try to reject the implanted tantalum rings, as 'foreign bodies,' months after proton beam treatment?  Mine are now barely covered by the sclera, visible like blue ink polka dots on my eye-ball, and irritating to the inside of my upper eyelid.  I don't know yet what, if anything, the surgeon will suggest should be done about it, and I am wondering if it is a common occurence.  Any comments would be welcome.

Jean

jean

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Racheal1987's picture
Replies 2
Last reply 3/2/2014 - 2:24pm

Hi Everyone,

I'm completely new to this site and am already excited about all the info that seems to be on here. I am a 26 year old living in Vegas currently but will be moving very soon to Japan for a great job opportunity. I am currently healthy (all negative on my PET scans, blood work, etc.). I however am only 2 years out of my diagnosis so I still will need checkups every 6 months with an oncologist and probably monthly check ups with a retinal specialist. My question is, does anyone know of any resources or great doctors in Japan in the Tokyo or Yokohama areas? I know this is far fetched, but I just thought I'd throw it out there. 

Also, I'm wondering if anyone else has experienced radiation reinopathy after having the radtaion plaque surgery done? My eye formed a pretty large blood clot about a year and 2 months after my surgery and I've had to have extensive PRP laser done on my retina in order to stop the abnormal blood vessels from forming. I am just wondering what experience everyone else has had with that? 

After my surgery, I had severly decreased vision (maybe 75% gone due to the placement of the tumor being smack in the middle of my eye) in my treated eye and since the laser treatments have destroyed what little healthy retina I had left, I'm 98% blind now in that eye. It's hard to deal with at times, it makes me really sad to consider what a valuable treasure I've lost and the treatments are super painful to me, even with the painkillers the doctor gives me before the treatment. My doctor at UCLA advised me that if my body doesn't get the blood vessels under control that it could lead to glaucoma and possible enucleation after that, which is obviously the worst case scenario and my worst nightmare. I'm in a wait and see phase right now to see if the laser is having any effect on these blood vessels forming, and I hope to God that it's working. It's hard sometimes being the only person that I know of with this condition because no one really understands what we go through or how we feel. It would be so awesome if anyone else could share their experience and maybe some advice with me?

Thanks for reading this long post and for any help that you all could give!

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jmccay's picture
Replies 3
Last reply 2/21/2014 - 12:04pm

Hi Team,

My mother is meeting with Docs tomorrow (Jan 16) with the option to start ipi / Yervoy.  She is 73 and already pretty weak and tired and in bed most of the time.  So she is worried about side-effects and "what's the point?".

She had her eye out last Feb 2013 but the melanoma has spread to long bones and liver too.  So far this treatment is the only option being offered, or we let nature/cancer take it's own course.

We would love to hear from anyone - especially OM - with ipi experiences.

Much Appreciated & Best of Luck!
James

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Hi everyone, 

I wanted to take a second to remind everyone that CURE OM will be hosting its 3rd Annual Patient & Caregiver Symposium, Eyes On A Cure, at The Hotel Palomar in Los Angeles, CA, on March 1 & 2.  This year's event is being held in conjunction with Jules Stein Eye Institute and UCLA. For more details on the event, click on the link below:

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

As always, this event is free. There is a block of hotel rooms that is reserved for just a couple more days. If you have any questions, please contact me at MStoffa@melanoma.org.

 

Hope to see you there!

Molly

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

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