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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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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Hey all,

 

Just read article where anti-pd-1 drugs work best in tumors with protein pd-L1?  Anyone know if ocular melanoma has this protein?  We were tested for gnaq/gna11 and do have gnaq mutation.  All help is welcomed.  We are starting mek trial with selumetinib next week.  Will let you know how that goes.  Margaret

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Hey all,

 

Just read article where anti-pd-1 drugs work best in tumors with protein pd-L1?  Anyone know if ocular melanoma has this protein?  We were tested for gnaq/gna11 and do have gnaq mutation.  All help is welcomed.  We are starting mek trial with selumetinib next week.  Will let you know how that goes.  Margaret

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eyecancerny's picture
Replies 6
Last reply 7/13/2012 - 4:46pm

Todays NY Times featured an article on the genetic testing for OM featuring Dr. Harbour.  Here's the link:

http://www.nytimes.com/2012/07/10/health/genetic-test-changes-game-in-cancer-prognosis.html?_r=1&pagewanted=all

For those of us that attended the CURE OM conference there's nothing new here, but for others there's some valuable information.  

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We are still looking for an anti-pd-1 trial in nashville, atlanta, or close to chattanooga, tn.  Anybody know any that are in the works for 2012 or early 2013?  It looks like that bms would initiate more trials for ocular melanoma people who have progressed on yervoy as it seems the viable next step.  Please help us if you know of any.  thanks, Margaret Rogers

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We are still looking for an anti-pd-1 trial in nashville, atlanta, or close to chattanooga, tn.  Anybody know any that are in the works for 2012 or early 2013?  It looks like that bms would initiate more trials for ocular melanoma people who have progressed on yervoy as it seems the viable next step.  Please help us if you know of any.  thanks, Margaret Rogers

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lak's picture
Replies 19
Last reply 7/3/2012 - 11:28am

Hi,

I am in the UK, I was diagnosed with OM 5 years ago and became stage IV with liver metastasis in May 2009. I am 53 now and never thought I would see 2012. I have had a hard time  in the National Health Service getting a proactive approach to my disease. In the beginning it was very lonely. Things are changing and now most clinicians admit to patients that the disease can spread outside the eye.  I am now looked after by excellent doctors who are prepared to answer my questions and inform me about my disease. I have been extremely lucky , my small choroidal melanoma was close to the fovea but Proton beam has enabled me to have better than 6/6(20/20) vision. I have had avastin vitrectomy and cataract ops too. My liver was looked after by a top MRI specialist who found my metastases very early. These were treated first with liver resections x2 then ipilimumab recurrences 6 months later SIRT sorted all but 2 of 18 metastasis throughout the liver. Microwave ablation sorted the last 2. The latter treatment was the hardest and completed in Dec I am only just getting fit again. My 5k time is embarrassingly slow but then many UK 53 year old females can not do 5k at all! I have added swimming and cycling too to my fitness regime to try and rest my joints a bit. My latest scans are all clear of disease. I have plans to run a 10k and maybe a half marathon- but also a SCUBA trip to the Maldives. I have only had  surgery.ipilimumab and radiation for treatments no actual chemotherapy .I am writing this post because I think it is so important that we all unite and share information both between patients and doctors but also across the table.

I accessed treatments because I was informed. In 2007 if you had a poor diagnosis it generally was not thought wise for a patient like me to be informed. I was empowered to get myself informed by an American Charity (Lance Armstrong Foundation) and I owe them the time I have gained. I then met other patients through the internet and Sara and learned through others experiences and "Google" . Many US doctors have seen my scans at various times and advised me. Several times I have been on the verge of traveling to the US for treatment only to be able to access treatment in the UK. For some reason it is easier to find out "who does what" in the US than it is in the UK. I profusely thank all the US doctors who have responded to my emails over the last 5 years it gave me so much support and ideas.  I hope by supporting CureOm and sharing across the pond that situation will change.

Reading Tom's post brought back so many memories of that first year post diagnosis- I really don't think I slept more than 15 minutes at a time for a whole year. For people with a new diagnosis I really want to tell them that even if the worst happens its not all bad. For those of you who have developed metastatic disease like me - yes its not always easy. For those carers who have lost their loved one - I am so sorry- but I thank you so much for continuing to be here and fighting for a cure for us. To the doctors who treat us I m sorry we are sometimes angry and you guys get in the firing line, I m sorry we don't often do well - it must be a hard disease to watch as a clinician over a career.

To all of those involved patents, carers and doctors sharing information and experiences from around the world has contributed to my disease free status- I am sure if team working across specialties and doctor patient relationships can be built on across the globe then a cure will be found for this disease.

Carpe diem

Lesley

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