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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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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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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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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TomKeepRockin's picture
Replies 6
Last reply 3/28/2013 - 3:55am

Hi -

I am about to start with my first treatment of Yervoy ("Ipi")next week at Kimmel Cancer Hospital (Philadelphia) under the guidance of Dr. Sato. I have had one immunoablation (early Sept) to the liver and will have a second one next week as well. Diagnosis is several small lesions (0-5cm) discovered. Last May initial Cancer (Uveal) Melanoma to the eye and had no choice but enucleation - and chromosomal/genetic tests suggested high % of metastization. So, it's been caught relatively early with constant MRI's, bloodwork and other tests. So - just wanted to know other people are reacting to the Yervoy tratments,, any commonalities. As you all can see, by viewing the yervoy website is nothing short of a death sentence... Thank You! Tom 

"Be casual and do random things!"

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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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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 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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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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margaretrogers57's picture
Replies 1
Last reply 3/1/2013 - 9:45am
Replies by: ThatHomeschoolDad

Has anyone heard of Ly2875358 for metastic uveal melanoma?   It is a Lily drug affecting the c-mets.  It specifically mentions uveal in one arm..Margaret

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margaretrogers57's picture
Replies 2
Last reply 2/27/2013 - 7:50pm

Has anyone heard of Ly2875358 for metastic uveal melanoma?   It is a Lily drug affecting the c-mets.  It specifically mentions uveal in one arm..Margaret

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We're at md anderson and I think they're going to try to treat my husband's metastic ocular melanoma with revlimid and sorafenib.  Has anyone heard of these or have taken them for metastic om?  Please help.  Margaret

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TomKeepRockin's picture
Replies 14
Last reply 1/30/2013 - 1:47am

I am about to start with my first treatment of Yervoy ("Ipi")next week at Kimmel Cancer Hospital (Philadelphia) under the guidance of Dr. Sato. I have had one immunoablation (early Sept) to the liver and will have a second one next week as well. Diagnosis is several small lesions (0-5cm) discovered. Last May initial Cancer (Uveal) Melanoma to the eye and had no choice but enucleation - and chromosomal/genetic tests suggested high % of metastization. So, it's been caught relatively early with constant MRI's, bloodwork and other tests. So - just wanted to know other people are reacting to the Yervoy tratments,, any commonalities. As you all can see, by viewing the yervoy website is nothing short of a death sentence... Thank You! Tom 

"Be casual and do random things!"

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Hello everyone!  I hope this message finds all of you feeling well.  I wanted to post to remind everyone of CURE OM's patient meeting, Eyes On A Cure, that is taking place on March 2nd & 3rd at MD Anderson Cancer Center in Houston, TX.  Attatched you will find the draft agenda for the meeting.  This is a free event to everyone, however registration is required.There is a block of rooms reserved at the Houston Marriott at the Texas Medical Center until February 7.  If you register before February 7, you will received the discounted rate.   

This meeting is not only a time to learn about what is going on in the world of OM, but to also network with other patients and caregivers that are going through a similar situation as you are. Tell your friends, tell your family, bring your loved ones. 

Here is the link to to the event page on the CURE OM website where more information, including the draft agenda, can be found at this link:

http://www.melanoma.org/get-involved/2nd-annual-cure-om-eyes-cure-patient-and-caregiver-symposium-houston-tx

The agenda can be found at this link:

www.melanoma.org/sites/default/files/program-documents/2013 CURE OM Patient MTG Agenda.pdf

Don't forget to visit the CURE OM Facebook page at: http://www.facebook.com/cureom

Follow us on Twitter: @MRFCureOM

As always, if you have any questions, please send an email to cureom@melanoma.org

Looking forward to seeing you in Houston! 

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

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Jinx's picture
Replies 7
Last reply 1/21/2013 - 11:36pm

I posted this in the MPIP page and it was suggested that I also post here.

 

Hello

In 2006 I was diagnosed with ocular malanoma in my left eye. Soon there after I had plaque surgery at Jules Stein Eye Institute. I did lose most vision in that eye but was glad to be alive. One year ago in Dec, my yearly CT scan showed 5 small (1.2cm) spots on my abdomine. Six months later in June they showed no growth. This past Dec the CT scan intecated that at least one of the spots had grown (1.7cm) A biopsy was ordered and showed that it was melanoma. 

I have recetly gone to USC Norris Cancer Center and my Doctor there (Dr Wong) has recomended that I start  Yervoy infussion as treatment against the melanoma. I have read so many horrific side effects that I am now seeking others that may have gone through this tratment.

My question is simple...what are your feelings about this treatmeant, and what others might you recomend?

Not sure if my condition makes any difference, but here it is anyway.
I am a 59 year old male in good to great health (other than the melanoma) I am 5'9' and weigh 160. I am on a mostly glutten free diet, very little meat
I exercise 4 to 5 times a week....weight lifting and cycling. Never smoked. I havent even been sick in the last 15 years (the flu was the last illness) 

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