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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Replies by: lak

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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sunnybunch's picture
Replies 8
Last reply 8/17/2013 - 1:44pm
Replies by: lak, NameMax, Anonymous, Chookapa

My brother has been offered a clinical trial for AEB071 at Dana Farber.  Has anyone with metatastic ocular melanoma tried this drug on a different clinical trial?  If so what were the side effects and was it successful?

Thanks, Anne

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This question was posted on the CURE OM Facebook page today, and I thought it was worth reposting here.  

Even though they share the name melanoma, there are many differences between ocular melanoma and cutaneous melanoma. How do you educate others about the differences?

One great way is to direct them to the CURE OM web page where these differences are highlighted: http://www.melanoma.org/learn-more/types-of-melanoma/cure-ocular-melanoma/what-is-ocular-melanoma

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

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Jinx's picture
Replies 9
Last reply 7/29/2013 - 4:45am

I had my first Yervoy infusion on Friday (2/1) and actually had a side effect not from the Yervoy but from the Benadryl they gave me pryer to the infussion. Belive it or not I have never taken Benadryl in any form. Aside from this cancer, I really have never been one to get sick. The last time I was sick was about 15 years ago when there was a bad flu hitting.
Anyway...I started feeling very strange and felt like I was going to pass out, but not really dizzy. It was like a hyper anxioty about something about to happen, alone with a feeling I was going to pass out. My blood pressure dropped from 120/72 to 88/65. They opended the iv and flushed my vein. It fianlly went away after about ten minutes. 
Anyone else here have this happen? If so, did they use something other than Benadryl before the next infusion/

The only side effect I had from the Yervoy (if it really was one) was a few back to back adrenalin head rushes later that night. I was a little bit slow to get going the next day, but have felt fine since.

Jerry

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Hello everyone, 

I wanted to remind you about tomorrows free webinar titled Ocular Melanoma Survivorship: Living with the Psychosocial Impacts of OM.  The webinar takes place tomorrow afternoon from 4pm to 5pm EDT.  Registration is required, and remains open.  Please click on the following link to register for tomorrows event.  

http://www.melanoma.org/get-involved/ocular-melanoma-webinar-survivorship

If you are unable to participate during this time, the webinar will be recorded and posted on the CURE OM webpage at a later date.  

 

Best, 

Molly

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

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Hello everyone, 

The May 9 CURE OM Liver Directed Therapies webinar is now up and running on our website!  Here is the link to the webinar:  http://www.melanoma.org/get-involved/cure-om-webinar-liver-directed-therapies

There is a short login that will have to be done prior to viewing the webinar.  

As a reminder, the next CURE OM Webinar titled Ocular Melanoma Survivorship: Living with the Psychosocial Impacts of OM will be held on July 9, 2013 from 4 pm to 5 pm EDT.  Registration is free and can be found here:  http://www.melanoma.org/get-involved/ocular-melanoma-webinar-survivorship

Best, 

Molly- CURE OM

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

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Good evening everyone!  I wanted to bring your attention to the upcoming Post ASCO teleconference that will be taking place on Thursday June 13, 2013 from 4 to 5 pm EDT. 

Dr. Lynn Schuchter and Dr. Leslie Fecher will provide callers with a recap of the 2013 American Society of Clinical Oncology meeting that was held in Chicago from May 31 - June 1, 2013, including the latest on melanoma treatment options, clinical trials and research.  

Information on how to join the teleconference can be found by clicking the following link:

http://www.melanoma.org/get-involved/2013-post-asco-teleconference

 

Best, 

Molly- CURE OM

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

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edamaser's picture
Replies 9
Last reply 6/5/2013 - 12:09pm
Replies by: paperdetective, Anonymous, edamaser, joelcairo, eyecancerny

Dear Friends,

This past Sunday, May 5, 2013, an article appeared in the Review section of the New York Times written by a resident in internal medicine.. 

http://www.nytimes.com/2013/05/05/opinion/sunday/the-cancer-of-optimism.html?pagewanted=all&_r=0 

The title is "The Cancer of Optimism."  I was horrified and very agitated by the opinions expressed.  These ideas have repeatedly been espoused by other author/doctors in several other articles during the past couple of years.  I am very concerned that they will come into the mainstream.  If they do they will harm the efforts we are trying to encourage in a forum such as this.  We are taking upon ourselves the responsibility to find out as much as possible about our disease, then make our own choices about courses of action.  We all are also fueled by hope, hope that the medical predictions might be wrong, that we might secure for ourselves a few more days or weeks of life, and that by sharing our knowledge and by serving in clinical trials we may be of help to others

The article assumes that the patient knows only what the doctor tells him, and that it is up to the doctor to direct the patient into a course of action or non-action.  It considers hope on the part of the patient in the face of a terminal disease to be a detriment, not to be encouraged, and it makes no mention whatsoever of clinical trials.

This is the letter I wrote to Dr. Warriach:

 

Dr. Warriach, to give you the benefit of the doubt, I don't think you know how much this article is insidiously demeaning to patients.

 You assume that physicians have a lock on "the truth," that only they are privy to medical information pertinent to the patient.  Thankfully patients have found the key, in the form of the internet, which not only allows them to verify the doctor's "truth," but to learn many other truths that the doctor has failed to convey.  The medical world no longer is able to keep secrets from patients, nor should they.

 The doctor's obligation is not only to convey the situation as knowledgeably as he can, but to share all the options available, along with their risks and benefits.  It is not his job to choose a course of action for the patient, or to impose his values upon the patient's choice.  You apparently assume that what course to take is the physician's choice; it is most certainly the patient's choice.  What an arrogant assumption.

 I find it strange that nowhere in the article is the concept of clinical trials.  These represent both hope for the patient, as well as an opportunity for him to make a contribution to knowledge, to give something to those who go after him, offering him a sense of usefulness, rather than completely focusing on himself. 

 This common omission of suggesting the option of clinical trials to patients is astounding in light of the desperation of researchers to find patients for their trials.

Hope can and does co-exist with knowledge of the "truth," one involves the intellect, the other emotions.  A person can know the sad scientific truth of his prognosis, and also have hope that it may not be accurate.  To extinguish that flicker of hope is cruel.  It is that very hope that may give the patient the wherewithal to live until his grandson's bar mitzvah

Though I am considered terminal, I have survived 10 years past a 6-month prognosis by having hope that enabled me to join many clinical trials.  Despite the fact that my prognosis sticks to me, and most certainly always will, I feel well and am looking forward to my grandson's bar-mitzvah in a few months.

Thank you for taking the time to listen,

Esther Damaser, Ph.D.

Yellow Springs, OH

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Dear All,

I wanted to make sure you are aware of our upcoming 2-part webinar series:

Part 1: "Ocular Melanoma Survivorship: Living With the Psychosocial Impacts of OM"

This webinar will be held on July 9, 2013 from 4-5pm EDT.

We hope you will be able to join us for this survivorship webinar featuring social worker, Arewa A Banjoko, MSW, LCSW, genetic counselor, Susan E. Walther, MS, CGC, and genetic counselor, Lisa Kessler, MS, CGC. These three speakers will collaborate to bring you key information on living with the psychosocial impacts of an ocular melanoma diagnosis.

 

Part 2: A webinar focused on the caregiver experience will be held in early fall, led by two oncology trained social workers.  More details are forthcoming.

 

FREE registration for the 1st webinar can be found at this link: http://www.melanoma.org/get-involved/ocular-melanoma-webinar-survivorship

 

Warm Regards,

Sara - CURE OM

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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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Dear All,

As many of you know, we have several CURE OM events this weekend...

1) If you are in the Boston area, please join us for the CURE OM Meet & Greet this weekend: an informal gathering of ocular melanoma survivors caregivers and others affected by ocular melanoma.  We are meeting at the restaurant 15 Walnut at 15 Walnut R., Hamilton, MA 01982. Please email CURE OM Volunteer Nelia Brooks at neliabrooks@comcast.net if you are able to come or with any questions.  You can also always email us at cureom@melanoma.org.  I look forward to seeing many of you there!

2) We also have 2 CURE OM Teams participating in this weekend's Miles for Melanoma 5k in the DC area-- here are links to both teams:

http://events.melanoma.org/faf/search/searchTeamPart.asp?ievent=1065066&...

http://events.melanoma.org/faf/search/searchTeamPart.asp?ievent=1065066&...

Thanks to all participants and supporters!!

3) Finally, Our most recent webinar on Liver Directed Therapies with Drs. David Eschelman, Carin Gonsalves, and Charles Nutting will be posted on our website soon and we will let you know as soon as it is up.

Thank you for all your support and I look forward to seeing some of you in Boston this weekend and cheering our comrades in DC in from afar!

Warm Regards,

Sara - CURE OM

p.s. to stay on top of upcoming events- please check out events page on our website (www.cureom.org) and our Facebook page (www.facebook.com/cureom) regularly.  Also, our quarterly electronic newsletter, Eye on OM, gives updates on recent activities and will give dates of upcoming events as well so please make sure you sign up for our mailing list!

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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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Replies by: eyecancerny, Cindyann

Hi Everyone,

The Eye Cancer Foundation in NYC is having it's annual luncheon on Saturday September 21, 2013. Stay tuned for more information.  If you have any questions, please feel free to e-mail me at: ammontijo@eyecancerfoundation.org

Best,

Anne Marie

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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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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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