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.

Expand/ Collapse Topic
 
Replies By
View Topic

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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?

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

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

Thanks,

Julieanne

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.  

Login or register to post replies.

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

Login or register to post replies.

Pages