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.

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

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Sue33CT's picture
Replies 3
Last reply 5/17/2013 - 11:09am

I'm looking forward to an update about the MRF Miles for Melanoma walk on Saturday

I walked from home on my tredmill since I was unable to fly to CA to walk in person.  Allowing virtual walkers was a WONDERFUL idea - it allowed people to donate and participate from whereever they were.  I was on Team "A Cure In Sight" and the team leader Melody was able to have our Team donations directed specifically to the MRF/CURE OM initiative.

From the day this walk was announced, the ACIS Team worked on networking with others in our community to spread awareness.  Awareness + donations.  That is the key to not only finding a cure, but helping individuals who may never have heard about OM before, to get the early care they need!

Sue from CT

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absinthe's picture
Replies 34
Last reply 5/5/2013 - 1:00pm
Replies by: Cindyann, joelcairo, Anonymous, eyecancerny, absinthe, Ann Wilson

Hello everyone.

 

Over the last couple of months my vision started worsening and from a pupil dilation test at my optometrist the shadow was noticed.In the last week I have been diagnosed with an ocular melanoma in my left eye. I don't know what stage it is, but the surgeon described it as on the smaller size.

I've now been booked in for a radioactive plaque in 4-6 weeks, which seems a long time away for something so serious. In the meantime I am getting my blood tested, I have chest x-rays to do, and an ultrasound of the liver in a weeks’ time.

I've been reading about my condition and I understand the liver I have somewhat abused down the years is the primary place this may spread. Plus for years to come I have a greater chance of something still being there and developing. All because I happen to have a freckle on my eye, and rolled a 1 on a very high sided die; amazing.

I'm hoping some wise heads out there can help me make the right moves.

I'm in Vancouver, Canada. So I'm pretty isolated in terms of driving somewhere for a second opinion. Are there any hospitals where the survival rate or treatment is known to be much higher than the norm?

The 4-6 weeks before treatment. Is that normal or should I be making a massive fuss to bring that forward?

Attempted to attach an composite image of my eye ultrasound, just in case it's useful.

Thanks,

Simon.

 

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/19/2013 - 11:10pm
Replies by: Cindyann, eyecancerny, lak

Hi folks, much to my disappointment, I decided last evening to remove my original thread on this subject. I wanted to tell those of you who were kind and gave me some good information on this topic, thank you. Please feel free to post again. I think many OM people like myself struggle with this decision on treatment. . I know, I did.

In Life we all have an unspeakable secret, an irreversible regret, an unreachable dream and an unforgetable love.

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Molly- CURE OM's picture
Replies 1
Last reply 5/5/2013 - 12:10pm
Replies by: Cindyann

 

This community was formed to bring together those who have been touched by melanoma. The primary goal is to provide support and information to people who are facing a difficult time in their lives. Toward that goal, the following guidelines will be strictly enforced:

  • No personal attacks of any kind will be tolerated
  • Slanderous posts impugning the character or ability of any health care provider are not allowed.
  • Slanderous posts impugning the care received or service provided by any health care institution are not allowed.
  • No abusive or obscene language will be tolerated.
  • No commercial posts of any kind are allowed.

Posts in violation of the above will be removed.

Please note: The bulletin board allows you to post anonymously, and your identity will be kept hidden from the community. However, this should not be considered permission to break any of the bulletin board posting policies. MRF does have the ability to identify anonymous users who purposely injure or harm the community or any member within it.

Bulletin Board Code of Conduct

One of the primary reasons this forum exists is to provide you, the patient or caregiver, with the opportunity to voice your opinion, ask questions, and find a network of people who are being proactive in their desire to find answers without going it alone.

To make the bulletin board a friendly and inviting place to learn, share and meet new people, the MRF encourages you to:

  • Welcome new members to the MRF community.
  • Check in on other members.
  • Be considerate when sharing your opinion. Stick to the topic rather than making comments directed at an individual.
  • Ask questions to get to know people and to learn more about their condition.
  • Keep your profile up-to-date. To update your profile, go to the Update Info button on the top-right corner of the site. Your profile can be added or changed in the Profile Information section.
  • Share your personal experiences without giving medical advice.
  • Share your feedback with us. The MRF wants to hear from you. Tell us your ideas for potential enhancements, questions and comments. Contact us today.
  •  

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

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edamaser's picture
Replies 2
Last reply 4/12/2013 - 9:18pm
Replies by: eyecancerny, Sue33CT

Dear Friends,

My husband and I have just returned from a trip to Florida to attend Christine's funeral, and the Celebration of her life held the following day.  Christine leaves her daughter and her sister, as well as many friends.  At the funeral, her sister read from the numerous notes you kindly sent in to the various lists/forums.  Those thoughts and messages were greatly appreciated, and contributed a facet of Christine's life probably not previously fully understood by her family and friends.  Our relationships in this OM community often co-exist with our "real-life" family and friends as a separate part of our lives.  Sometimes it is hard for those "real-life" folks to realize and understand its importance.  I know these relationships were an important part of Christine's life;  she enjoyed and was gratified by the give and take in which she participated, both on the lists/forums, as well as directly with many of you.  You were a tremendous support and help to her.

Christine's sister runs a wildlife rescue oganization.  In honor of Christine she arranged for Christine's daughter to release a recovered eagle back into the wild.  Christine's spirit soared, along with ours, as the eagle rose and disappeared.

Esther

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margaretrogers57's picture
Replies 1
Last reply 3/31/2013 - 9:55am
Replies by: ThatHomeschoolDad

My husband, Butch , is in a c-met trial and has been running a low grade fever 99, 100, 101 off and one for a couple of weeks.  Tumor fever was mentioned.. Have looked it up and can't find much.  Does anyone know anything about tumor fever.  Thanks, Margaret

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dwcowing's picture
Replies 2
Last reply 5/30/2013 - 11:58am
Replies by: paperdetective, lak

For those of you who had proton beam treatment and have tantalum markers in your eye, I just discovered that although they are okay in a 1.5 Tesla MRI machine, they are not okay in a 3 Tesla machine! I was all suited up in my oh-so-comfy hospital gown when the nurse came in and said "there's a little problem..." Fortunately, I was at UCSF which seems to have an abundance of MRI machines, including a 1.5 Tesla one in a different radiology office in a building across the street! So I was still able to have the scan today, just had to change back into street clothes, walk across the street, get changed again...

(For those of you who didn't have proton beam treatment, tantalum markers are tiny metal rings surgically implanted before proton beam treatment to guide the proton beam. They can stay in the eye afterwards since they are okay for MRIs (mostly!) and Xray machines, etc.

 

Deborah

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edamaser's picture
Replies 5
Last reply 3/30/2013 - 8:27pm

Christine is gone; my dear friend is gone.  She was my closest OM companion, consultant, supporter, and commiserator during the 7 years we traveled this awful trail together.  We each knew that the other truly understood.  We didn't have to worry about withholding the truth to protect the other.  We each knew the truth and could, and did, approach and work with that truth in utter honesty.

We both relied entirely on science, the scientific approach, and scientific research.  We shared and discussed every new paper we came across.  Christine was terrific at tearing apart these studies:  not good enough controls, dosage too low, results wouldn't generalize to OM, etc., etc.  Neither of us was trained in any medical field; Christine didn't even have a college education.  We taught ourselves; we shared our confusions and shared the answers we found.  She was one of the smartest people I have ever known.

Once we impudently attended a conference at NIH on cancer immunotherapies, a conference meant for medical researchers.  We flew in, met at the airport, shared a room, and went under the titles of "Dr. so-and-so."  We heard a multitude of papers, and learned a lot, but she learned more than I.

Christine generously gave of her knowledge to those who asked.  Countless others have benefitted from her big heart, marvelous brain, and vast wisdom.

Christine was the first person to join the pina colada trial, and we both celebrated with a pina colada every time we met.  Who knows, maybe it was the pina coladas and the scientific research combined that kept her alive long past the grim 6-month prognosis.  I will miss her terribly.

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Replies by: Sara - CURE OM, lak

Dear All,

We have received most of the recordings from MD Anderson of the 2nd Annual CURE OM “Eyes on a Cure” Patient and Caregiver Symposium and they have been posted on our YouTube channel here: http://www.youtube.com/playlist?list=PLqV-0vUlSC3beaxnqVfLosLiqE_jLSdUX&feature=view_all .  The recordings are broken up by half day increments (with the exception of the Celebration of Life which is a separate video) and timing for each specific session is noted under each video to allow you to jump ahead to the session you’d like to view.  Once we receive the Saturday morning sessions from MD Anderson and they are up on our webpage we will let you know.  Please email us at cureom@melanoma.org with any questions.

Warmly,

Sara - CURE OM

 

 

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edamaser's picture
Replies 4
Last reply 3/25/2013 - 4:34pm

Christine, my dear friend, and a long-time mentor, supporter, and advisor on these forums, is very ill.  She is now in the hospital, in a great deal of pain, but receiving good, loving care from her daughter and sister.  They are looking toward moving her to hospice after the hospital.  My heart is broken. Again.

Esther

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edamaser's picture
Replies 1
Last reply 3/21/2013 - 10:57am
Replies by: Molly- CURE OM

Christine, my dear friend, and a long-time mentor, supporter, and advisor on these forums, is very ill.  She is now in the hospital, in a great deal of pain, but receiving good, loving care from her daughter and sister.  They are looking toward moving her to hospice after the hospital.  My heart is broken. Again.

Esther

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eyecancerny's picture
Replies 4
Last reply 4/20/2013 - 5:38pm

Hi Everyone,

Our spring luncheon in NYC is all set.  We hope that some of you are able to join us.

 

Brunch is usually about $25-30 per person(not including alcohol)

Date: Sunday April 21  

Time: 12 Noon

Location:  Restivos http://www.restivorestaurant.com/

 

  209 7th Ave  New York, NY 10011
            (212) 366-4133

 

 

RSVP: JEJASEN@AOL.com

 

All the best,

Anne Marie

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edamaser's picture
Replies 6
Last reply 3/19/2013 - 3:33pm

Hi Friends,

Onward with the story, my story, our story.  I made an appointment with Dr. Falchook at MD Anderson for a consultation since I was in Houston anyway for the meeting.  He had labs done before I saw him.  He walked into the room and started by saying "We're not going to talk about cancer, we're going to talk about hospitalizing you--right now!"  My calcium level was critically high.  It took them nine days in the hospital to lower it enough for me to go home.

The same thing (hypercalcemia) happened to me a year ago about 2 months after my last ipi infusion.  Turns out that now is about 2 months after my last reinduction of ipi.  So, with this little evidence, we are concluding that ipi causes hypercalcemia in me.

Hypercalcemia causes lots of symptoms, among them mental confusion.  So, when I attended the conference I knew my mind was muddled, but attributed it to effects of aging.  Looking back on it, I am embarrassed by how truly confused I was.  I apologize to any of you out there whom I may not have recognized right off, or with whom I may have had ditzy conversations.  I'm getting back to what passes for "normal" for me in the brain department.

To remind you, the last treatment I had was a reinduction of ipi, last infusion mid-January.  Two weeks after that scans showed progression, no shrinkage.  I'm in the process of looking for what to do now.  I feel OK, and am grateful for that.

To those of you I met at the Houston conference, I thoroughly enjoyed seeing old friends, and making new ones, even though I was in a mind-muddle.

My thoughts are with all of you, along with my best wishes (sounds so trite, but true) in your, our, struggle.

Esther

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ThatHomeschoolDad's picture
Replies 2
Last reply 3/18/2013 - 7:46am

This is an older stufy, but somewhow I cam across a new link to it, so here it is.  Interesting use of bee venom, nano-particles and, yes, melanoma (cutaneous, natch, but that's typical).  Pretty neat, in a sort of Hitchcock-as-oncologist kinda way:

Article:

http://www.granthamjournal.co.uk/news/behind-the-headlines-2-6629/nanobe...

Study:

http://www.sciencedaily.com/releases/2009/08/090810174226.htm

 

--Tom

Keep Rowing!

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Tamils's picture
Replies 10
Last reply 3/28/2013 - 3:36pm
Replies by: Anonymous, Tamils, ThatHomeschoolDad, dwcowing

 

My father was diagnosed with stage iv melanoma last November after a lump in his skull turned out to be melanoma.  They could not find a primary on his skin.  He has had a spot behind his retina for 20 years or more, which had undergone a very tiny change, but an eye specialist ruled out ocular melanoma on inspection.  After his surgery to remove the skull met, his scans were clear.  Fast forward to his latest scans from last week, and he has two spots on the right lobe of his liver, as well as apparent lesions on various bones.  Today his oncologist, in combination with a different eye specialist who hasn't seen him for nine months, says that it's ocular melanoma, based solely on the fact that it has metastasized to the liver.  I'm not convinced it's OM.  He has good vision, so we would rather not have him lose an eye just to check on the OM status, when it's already spread anyway. 

The doctor also said that the mets were progressing too rapidly for ipi or IL-2 to work.  He is B-RAF negative.  She recommends Temodar but says it isn't much use.  We are collecting his records as quickly as possible to get a specialist's opinion.  He is otherwise in pretty good health and is in no pain; sure ipi can take awhile to work, but don't some people respond within a month or two?  I am also looking at clinicaltrials.gov.  Any comments on treatment would also be appreciated.  Thank you so much.  I also cross-posted this to MPIP.

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