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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Nan in Nebraska's picture
Replies 1
Last reply 4/6/2012 - 3:15am
Replies by: Sara - CURE OM

Hello All,

Well, I had my first re-induction infusion of Yervoy yesterday. I will have 4 cyberknife treatments to the lesion between my stomach and spleen. My oncologist did speak with a colleague of Dr. Wolchok's and his recommendation was to do cyberknife between the first and second infusion. So praying and keeping my fingers crossed for the "abscopal effect".

I'm looking forward to the symposium in June. If everything goes as scheduled, my last infusion will be June 6th. :)

Nan

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TomJ6299's picture
Replies 5
Last reply 3/21/2012 - 12:14pm

I went to an Ocularist in New Orleans who I wont name on 3/8/12, I'm not thrilled with the eye. At 8 weeks from enucleation I was ready for my prosthesis, he put me off a month because of Mardi Gras. During that month, I still had my conformer in from the enucleation, I could literally feel my socket area shrinking and sinking in. The prosthetic eye is in, upper lid hangs a bit, the prostheses looks quite a bit smaller than the other eye, it also looks like the whole eye area is lower than the other. The eye has been full of crud or whatever u call it each morning. Im so unhappy, no one told me that putting off the fitting for a month would cause the socket to shrink and sink. Friends and family just say it looks like a lazy eye, and not bad at all. I go back in 2 weeks for adjustment. I looked at pictures of people with prosthetic eyes, most perfectly match the other eye, I believe I got the bottom of the barrel as far as Ocularists go

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Please join us for a free teleconference on April 12, 2012 from 8-9pm EST. The topic is "When Mom or Dad has Melanoma" and will be hosted by Dr. Fran Lewis from the University of Washington. Don't forget to register!

http://www.melanoma.org/get-involved/when-mom-or-dad-has-melanoma-educational-teleconference 

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TomJ6299's picture
Replies 18
Last reply 3/11/2012 - 3:36am

Hi ! My name is Tom fontenot , I was diagnosed with Choroidal Melanoma Friday, the last 2 days have been like a nightmare. Im 49 and never have been sick, my vision is screwed up, didnt sleep Friday night but rested well last night, Today I seem to have some peace, guess im getting used to it already, any feedback will be greatly appreciated

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Next week, Melanoma.org will be undergoing maintenance to improve site functionality. To make the process smoother, we want to alert you that the forums will be unavailable between the hours of 2 and 5 a.m. (EST) on Tuesday, February 7, and that any posts made between 5 a.m. and noon that day may not be captured in the transition. Thanks for your understanding! 

Shelby - MRF

 

Why are the boards down?

The boards are suspended so no changes are made to the site during the update - this helps the update process happen much faster.

Will I be able to post again after the boards come up in the morning?

Ideally, we'd like you to wait to post for a few hours after the boards go live, say, waiting until 8 or 9am EST.  That said, you should be able to post again as soon as the boards are live again at 5 am EST.  However, please be advised that if you do post that early, your post may not be captured fully.

The boards look exactly the same as they did before. What really changed?

You’re right -  the boards are the same. What changed is how responsive the site will be. We upgraded our server so that the site will be faster and there will be fewer hang-ups when you click on links, especially on the weekends when traffic is high. 

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Sara - CURE OM's picture
Replies 6
Last reply 1/3/2012 - 10:10am

Dear All--

Thank you for joining the first CURE OM Community Teleconference.  We threw out a lot of information and only had about 15 minutes for Q&A so please feel free to use this space to ask any additional or lingering questions.... we are here to help answer your questions, and, if it is something we don't know, we can try to find the answer for you.

Also, in case you were unable to join the call in person, we will have the recording up on our website (www.cureom.org) soon.  Feel free to ask questions after listening as well...

Warm Regards,

Sara - CURE OM

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Molly- CURE OM's picture
Replies 4
Last reply 12/29/2011 - 1:03pm

Hey everybody!  I was in on the teleconference, but didn't get a chance to ask my question, mostly because I was trying to figure out the best way to ask it.  I really enjoyed listening to Dr. Harbour and Dr. Flarety. 

Here's my question.  My mother in law passed away from metastatic OM in March of this year.  There is a strong family history of cancer in her family.  Her father died of bone cancer, her brother died from either brain or lung cancer, but was also in Viet Nam.  Now that gene mutations have been identified, would it make sense for her siblings and her children to be tested for the same mutations?  Is there even a test out there that is known in the general physican community for them to request? 

I was also so irritaited during the phone conference because there was talk of doing biopsy's of the OM tumors upon diagnosing.  I asked my mother in laws doctor about doing a biopsy and was told "oh no, we don't do that for fear of the cancer breaking out and spreading to other places."  Just goes to prove even more about the lack of education on this disease. 

Thank you,

Molly Stoffa

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

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Shelby - MRF's picture
Replies 2
Last reply 12/20/2011 - 1:39pm

Please join us for the CURE OM Community Teleconference on Saturday, December 17th, 2011 at 12pm EST.  The call will be led by Dr. Tim Turnham, Dr. Sara Selig, Dr. William Harbour, and Dr. Keith Flaherty.  For additional information, the agenda and registraion, please use this link:

http://www.melanoma.org/get-involved/cure-om-community-teleconference 

If you have any questions, please don't hesitate to contact me at education@melanoma.org or 202-347-9675!

Shelby - MRF

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Replies by: Sara - CURE OM

Dear All-- we are very excited to announce our 1st annual Eyes on a Cure: Patient and Caregiver Symposium: 

CURE OM's 1stAnnual Eyes on a Cure: Patient & Caregiver Symposium

One month after hosting the first CURE OM scientific meeting (for physicians and researchers), CURE OM is excited to announce that we will be bringing the latest news from the ocular melanoma scientific community directly to patients and their loved ones in the inaugural Eyes on a Cure: Patient and Caregiver Symposium on June 16th and 17th, 2012.  Eyes on a Cure will bring patients, caregivers and researchers from around the world together to offer educational sessions, support groups led by oncology social workers, sessions on complementary therapies, as well as informal time for networking. 

This first patient and caregiver symposium will be held in Philadelphia at the Kimmel Cancer Center of Thomas Jefferson University.  Confirmed speakers include: Carol Shields, Takami Sato, David Eschelman, Carin Gonsalves, William Harbour, and James Pingpank.  Please check back often as new information is posted and registration opens. 

We look forward to seeing you in June!  Please do not hesitate to contact us with any questions or concerns.

Warm Regards,

Sara- Director, CURE OM

& and CURE OM team

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Nan in Nebraska's picture
Replies 4
Last reply 12/17/2011 - 11:44am

I'm not sure this getting to the right forum as I see at the top "Create Off-Topic Forum Topic" even thought I'm under the Ocular Melanoma Forum. Hopefully this gets to the right place. Anyway-

I am so bummed! I've been watching AND waiting for the anti-pd-1 trials to open and see that they exclude uveal melanoma. I've had some success with Ipi/Yervoy, being stable since April after finishing the Ipi trial the end of Dec., 2010. I have what look to be highly necrotic lesions in my liver, but still am showing a 3 cm mass near my stomach and a few spots in my abdomin. I was so hoping to find a anti--pd-1 trial. I saw on the Melanoma International website that a highly respected doc said it was 3 time better than Yervoy with fewer side effects. What can be done to get the drug companies to accept us. Would it help to call them or have our docs plead our case? HOPEFULLY they will drop the exclusion. I'vebeen fighting this disease since 2001 and have done GM-CSF, abraxane, avastin, carboplatin, temodar, gleevec, MEK, Ipi/Yervoy. There just does not seem to be much else out there. Any thoughts or recommendations???

Nan in Nebraska

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Shelby - MRF's picture
Replies 4
Last reply 12/2/2011 - 10:27pm

Welcome, everyone, to the newly launched CURE OM online forum!  This forum is for anyone affected by ocular melanoma.  It is our hope that you use this resource to create friendships, ask questions, get advice, share your triumphs, laugh, whine, complain...and probably lots of other things I'm forgetting.  You will build friendships here that will be unlike any other.  You will hear stories that will inspire you.  You will hear stories that will break your heart.  But, most of all, you will have a support group to lean on 24 hours a day -- a group of people who have gone though, or are going through, the same experiences as you. 

On behalf of the Melanoma Research Foundation, we look forward to experiencing this journey with you and welcome you to this community.  If you need to contact me, I can be reached at smoneer@melanoma.org, 202-347-9675, or you can email cureom@melanoma.org and someone directly involved in the CURE OM initiative will contact you.

Sincerely,

Shelby Moneer, MRF Health Educator

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als's picture
Replies 1
Last reply 11/28/2011 - 11:58pm
Replies by: als

Interesting article and link to it about preventing mets.....
 
Chemopreventive effects of dietary phytochemicals against cancer invasion and metastasis: Phenolic acids, monophenol, polyphenol, and their derivatives

http://www.cancertreatmentreviews.com/article/S0305-7372(11)00041-7/abstract?elsca1=etoc&elsca2=email&elsca3=0305-7372_201202_38_1&elsca4=oncology

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Although many new molecular and genetic discoveries have been made in the ocular melanoma field in the past few years, much more research is needed to more fully understand how some of these discoveries will impact effective treatments for patients.  In the a recent review article: http://www.hindawi.com/journals/pri/2011/159421/, some of the molecular differences between ocular and cutaneous melanoma are outlined.  Although this article is largely up-to-date and accurate, it doesn't mention the GNA11 mutation in ocular melanoma.  As many of you will know, the general numbers are that about 50% of ocular melanoma has a mutation in GNAQ and another 30% has a mutation in GNA11.  From early research, it looks like the molecular signaling is similar between these two mutations, but research is ongoing to learn how to effectively target these mutations, and, if targeting these is enough to halt disease-- current thinking is that the GNAQ and GNA11 mutations are part of the solution, but likely not the complete solution (for example, researchers are now looking into the role of the newly identified mutation in BAP1 and how this may interact to cause metastasis).  As you can see from this article, research in ocular melanoma is behind research in cutaneous melanoma and some of the ongoing areas of ocular melanoma specific research are mentioned in the Conclusion section of this article.

Please feel free to post thoughts, questions, or experiences with some of these treatments (i.e. many ocular melanoma patients have had experiences with MEK-inhibitors and new trials are opening for IGF1-R inhibitors and other targeted therapies as well).... please feel free to ask questions and share your experiences....

Warmly,

Sara - CURE OM

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About 6 years ago, eye cancer patients living in and around NYC starting meeting annually for a luncheon each spring.  The group has grown over the years and it has become a bi-annual event (spring & fall).  Our next get together is scheduled for Saturday November 19th at 3pm at the Blue Belle Cafe in NYC.  If you are interested in attending, please let me know.  You may e-mail me at eyecancerny@gmail.com.  Hope to "see" you there.

Peace,

Anne Marie devil

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