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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Kimmie Kay's picture
Replies 10
Last reply 10/3/2012 - 7:54am

I think I may have finally found where I "need to be" ! I posted earlier today on the otherforum and was directed here :)

I am hoping to find someone who has had radiation plaque therapy...will my vision ever come back in the treated eye? My radiation was a little over a month ago and when I had my check up yesterday, I already have a cataract forming. My vision (if you want to call it that) is 20/400?..legally blind in that eye...

While I am thrilled that the tumor is shrinking, I am worried about being able to return to work...I drive school bus, so obviously, without my vision my only source of income is in jeopardy! The Dr. says it could be 3-6 months before the cataract can be removed and after that he can't predict anything.

I really need to hear from someone who has been thru this (I have not been able to find any local help) and just found this site this morning :)

Kim

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Just came across this in the latest CURE mag:

 

tellingkidsaboutcancer.com

 

Seems like a decent site.  I know the subject came up back during the Philly conference.

 

--Tom

Keep Rowing!

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LindaP1017's picture
Replies 1
Last reply 9/24/2012 - 2:23pm
Replies by: ThatHomeschoolDad

 Hi.  I am new to this website.   My mom was diagonosed with Melanoma on her left shoulder 13 years ago.  She had extensive surgery to remove all infected tissue.  She did not have chemo or radiation because the dr. assured her that everything was clean .     In July while having a catscan for another issue, they found a spot on her lung.  They removed part of the lube of her left lung on aug. 27th.  They originally thought it was a Carcinoid tumor, but the pathology reports showed it was Melanoma.      Can this be related to her Melanoma from 13 years ago? Does she now have whats considered Metastic Melanoma?  Is there a chance it could now spread again to other areas??  i am so confused because there was 13 years between..... 

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This is a re-post from the other OM forums and list, so kindly excuse the duplication if you subscribe to multiple sources.  I'm casting a rather large net to try to hit as many eyeballs as possible.

Renee Zalinsky, RN, OCN, Senior Cancer Care Coordinator of the OM program at Thomas Jefferson, and all-around real-life super hero, is reporting that Dr. Sato and the Jeff team are swamped with requests from patients seeking second opinions.

If you are a current or former patient of Dr. Sato, or if you're already having Sato look at your scans while in treatment elsewhere, no problem.  However, the Jefferson team can't handle the influx of new scan review requests from non-patients.  This major hub of the OM world is, incredibly, run with just a few doctors and support staff juggling patients, consults, and original research.

Per Renee:

"Please let patients know for those that are "grandfathered" in, we will still review their imaging and give input.  At present, the patients on hold are those who are just sending their imaging for Dr. Sato's review with no intentions on coming to see him.  I understand patients wanting a second set of eyes looking at their imaging to confirm benign vs. malignant disease.....but this review process is time consuming and taking away from patients under active treatment and spreading everyone a little too thin."

Renee also encourages everyone to write letters to the hospital in support of Dr. Sato's work and to encourage expansion of the Metastatic Uveal Melanoma program.  Here are the big guns to contact:
 
David P. McQuaid, FACHE
President
Jefferson University Hospitals
111 S. 11th Street
Gibbon Building, Suite 2210-L
Philadelphia, PA 19107
 
and
 
Richard G. Pestell, MD, PhD, MBBS, FRACP, MBA
Chairman/Director
Cancer Biology
Kimmel Cancer Center
Bluemle Life Sciences Building
233 S. 10th Street, Room 1050
Philadelphia, PA 19107
 
and
 
Neal Flomenberg, MD
Chairman, Medical Oncology
834 Chestnut Street, Suite 320
Philadelphia, PA 19107

 

--Tom

Keep Rowing!

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Dear Friends,

 

My husband was on the selumetinib for his metastic ocular melanoma.  Scans showed progression of some of the liver tumors.  We're now trying to qualify for pd-1 trial.  Has anyone had good response the anti-pd 1 and a vaccines for liver and bone mets?  Please advise.  Margaret

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margaretrogers57's picture
Replies 4
Last reply 8/22/2012 - 5:30pm

Does anyone know if chemoembolization would help for many small liver tumors.  We have 50 and the largest is 1.6 cm  Help..Margaret

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edamaser's picture
Replies 1
Last reply 8/22/2012 - 4:51pm
Replies by: margaretrogers57

Hi all,

 

I just want to share a bit of good news.  We can all use good news in this ocean of glum occurrences in which we find ourselves.

Having had two brain lesions, which were stereotactically radiated, I just had a 2-1/2 month follow up brain scan:  NO NEW ONES!

On to body scan in September.

Esther

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wes's picture
Replies 3
Last reply 8/13/2012 - 6:58pm
Replies by: edamaser, wes

Stage 2B nodular melanoma on my forearm.  I had resection and sentinel node biopsy and both were clean.  My question is where do I find a dr that specializes in Melanoma and or a treatment center that does so.  I am in the Cincinnati OH area. Thanks

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Julieanne's picture
Replies 13
Last reply 8/11/2012 - 10:08pm

If my primary physician is not at all familiar with OM (choroidal melanoma) and his suggested treatment following initial diagnosis and subsequent plaque treatment consists of blood testing only, what could I do to obtain a list of options regarding experts for follow-up treatment?

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Cleaned out my (admitedly teeny) IRA last week and bought a little used tent trailer to take the family camping on a regular basis.  More comfy than a tent on the ground, still small enough for them to tow and set up once I take the big dirt nap.  It has to be one of the least rational things I've done in a while, but I'm feeling rather giddy with the audacity of it all.  Thought I'd share.

--Tom

 

Challenge Accepted.

Keep Rowing!

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margaretrogers57's picture
Replies 2
Last reply 8/8/2012 - 6:58pm

I have been looking in vane for anti-pd-1 trials that admit both ocular primary and former yervoy treatment.  If pd-1 is so good, why don't they have several trials and sites.  This is so frustrating to say the least.  Margaret

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Is bevacizumab (Avastin) standard for choroidal melanoma-related exudative retinal detachment (ERD) following plaque radiation?

Thanks,

Julieanne

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My husband has developed a sunburn like rash on his face from selumetinib.  Anyone have that and what can be done?  Thanks, Margaret

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My husband has developed a sunburn like rash on his face from selumetinib.  Anyone have that and what can be done?  Thanks, Margaret

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ThatHomeschoolDad's picture
Replies 1
Last reply 7/25/2012 - 7:24am
Replies by: RobC

Not for nothing, but if, as indicated at the Jeff conference, you want this to be a vibrant board and a realistic alternative to the Ocu-Mel list, you'll have to police spam.  You might also consider a new backend architecture that dramatically reduces the lag time after each submit.

--Tom

Keep Rowing!

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