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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Molly- CURE OM's picture
Replies 2
Last reply 12/10/2013 - 3:57pm
Replies by: joelcairo

Hi everyone, 

I wanted to take a second to post some photos (hopefully it worked!) from the recent CURE OM Scientific Meeting. This meeting was held this past Sunday, November 17, 2013, in Philadelphia. Approximately 130 researchers and physicians attended this bi-annual event. 

 

Sunday, November 17, 2013

Today's workshop organized by CURE OM, NCI, and SMR- Emerging Research in Uveal Melanoma and Implications for Treatment: Current Status and Future Directions- was opened this morning by CURE OM Co-Founder and Director, Dr. Sara Selig, who gave patient and caregiver perspectives by sharing the words you all shared with us- thank you for helping us open this important international scientific meeting with words from the OM patient/caregiver community! We are hopeful today's meeting will get us closer to a cure!

 

Monday, November 18, 2013

Yesterday's international scientific meeting, organized by CURE OM and the NCI, was the largest scientific gathering specifically focused on ocular melanoma yet! CURE OM is working with the NCI to write up a report from yesterday's meeting. The morning sessions were spent sharing research updates from different labs and trials around the world-- including updates from CURE OM research grant recipients. A good deal of the afternoon was spent discussing how to have the best and most effective international collaboration to accelerate clinical trials, and, thus, more effective treatments, for patients and we are making headway developing better collaborative infrastructure for clinical trials and a way to make them more accessible to patients!
 
Tuesday, November 19, 2013
We had a dynamic panel discussion during Sunday's CURE OM/NCI scientific meeting- discussing the logistics of accelerating international OM clinical trials. Thank you to all who participated-- we are getting closer to more effective treatments for patients, stronger international collaboration, better access for patients, and, ultimately, a cure!

From L to R: Dr. Keith Flaherty, Massachusetts General Hospital Cancer Center, Dr. Mario Sznol,Yale Cancer Center, Dr. Howard Streicher, National Cancer Institute, Dr. Takami Sato, Thomas Jefferson University Hospitals, Dr. Poulam Patel,The University of Nottingham, and Dr. Richard Carvajal, Memorial Sloan-Kettering Cancer Center

 
Best, 
Molly

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

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ThatHomeschoolDad's picture
Replies 1
Last reply 1/14/2014 - 7:29pm
Replies by: jeanjean

Renee Zalinsky at Jefferson asked me to spread the word:

 

Webinar next Thursday, November 21st at 1pm EST with Dr. Jingduan Yang who will discuss integrative care and the mind/body connection in confronting cancer. Dr. Yang is the Founder and Medical Director of Integrative Psychiatry and Natural Medicine at New York's Tao Institute.
 
We want to provide questions from the OM community to Dr. Yang in advance of the webinar, so please submit ideas and inquiries to Jessica:  jessica@ocularmelanoma
 
Audio dial-in: +1 (773) 897-3000
Access code: 686-229-485
 
 
About Dr. Yang

Dr. Jingduan Yang is a leading physician, board-certified psychiatrist and international expert on classic forms of Chinese Medicine. He uniquely incorporates acupuncture, Chinese herbal medicine, neuro-emotional technique, nutritional and dietary consultation, psychotherapy and medication management in the care of patients with a variety of emotional and physical illnesses. Following family tradition, he is a fifth generation teacher and practitioner of Chinese medicine, specializing in acupuncture.

Dr. Yang received his medical and neurology training at the Fourth Military Medical University in Xian, China and completed a research fellowship in clinical psychopharmacology at Oxford University in the United Kingdom as well as residency training in psychiatry at Thomas Jefferson University in Philadelphia. He has authored numerous peer-reviewed articles and has been a speaker at several national and international conferences and academic forums. In 2008, after two years of intensive training in areas including botanical medicine, mind-body physiology, nutrition, and holistic clinical care, Dr. Yang completed a prestigious Integrative Medicine Fellowship at the University of Arizona launched in 2000 by internationally-recognized integrative medicine pioneer Dr. Andrew Weil.

Dr. Yang is the founder and medical director of Tao Integrative Medicine. In addition, Dr. Yang is the Director of Oriental Medicine and Acupuncture Program at the Jefferson Mryna Brind Center of Integrative Medicine and Assistant Professor of psychiatry and human behavior at the Thomas Jefferson University Hospitals.

 

Keep Rowing!

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Hi everyone!

CURE OM is proud to announce the 3rd Annual Eyes On A Cure Patient & Caregiver Symposium. The upcoming symposium will take place at The Hotel Palomar in Los Angeles, CA. The dates of this symposium are March 1 - 2, 2014.  For more information you can click here: http://bit.ly/19aryYf

If you have any questions please contact cureom@melanoma.org

We look forward to seeing you there!

Best, 

Molly- CURE OM

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

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lak's picture
Replies 2
Last reply 10/25/2013 - 2:06pm
Replies by: Shelby - MRF, lak

I am looking for ideas on questions that newly diagnosed eye pateints should ask their ocular oncologists- suggestions please

 

Then what one should ask one s liver surgeon

 

questions for interventionsis

 

questions for oncologist.

 

Please all think what would be good questions we should ask

 

thanks

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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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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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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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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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New research focused on ocular melanoma is being presented today at the American Society of Clinical Oncology (ASCO) meeting-- research showing the first systemic treatment to have an impact in metastatic uveal melanoma... here are a couple links to articles about the research that came out today at the ASCO meeting:

http://www.reuters.com/article/2013/06/01/us-cancer-melanoma-eye-idUSBRE...

http://www.usatoday.com/story/news/nation/2013/06/01/melanoma-drugs-exte...

 

Warms Regards,

Sara - CURE OM

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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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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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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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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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