Posted By
Nan in Nebraska
12/2/2011 1:58pm
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Replies: 4

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

tmc - (12/14/2011 - 1:37pm)


There is an anti-PD-1 trial at the Moffitt Center in Tampa and there's no OM exclusion for that one. Contact The trial code is MCC 15400. 

Unfortunately, they require a certain immune type, which I did not have, so I have to find another one. I was speaking with Dr. Keith Flaherty at Mass General about trials and he lamented the fact that many trials exclude OM, and he said there's really no reason for it. I don't know what the solution is to this. I'm continuing to look for other anti-PD-1 trials and MEK trials. I see that you tried MEK. What was the result? I did Ipi this summer and didn't have the same success you did. If I get any more info on anti-PD-1 trials, I'll post them here. 

take care,


Sara - CURE OM - (12/15/2011 - 12:46am)

Dear Nan and Todd,

You both raise a very critical point-- the need to advocate for the INCLUSION of ocular melanoma patients in specific melanoma trials.  This is something we plan to highlight as our first advocacy concern for CURE OM to tackle.  We will keep you updated as we move ahead and make progress regarding this crucial concern, but we hear, and share, your concerns.

WIth warm regards,

Sara - CURE OM

Nan in Nebraska - (12/17/2011 - 11:44am)


Thank you! Your hard work and dedication are greatly appreciated. I hope you and Gregg are doing well.

Best wishes and Happy Holidays.

Nan in Nebraska

Nan in Nebraska - (12/17/2011 - 11:36am)


Thanks for the reply. The anti-PD-1 trial at Moffitt excludes if you've had IPI (CTLA-4). Curtec's trial excludes OM folks. I'm hoping that Merck/Shering Plough'supcoming anti-PD-1 will include OM AND folks who have previously received IPI.

I did a MEK trial at the Univ. of Colorado, but had to stop due to side effects to my remaining eye (left enucleated Jan., 2002). I had an impending central vein oclusion. Dr. Lewis said it wasn't worth losing my eyesight. The good news was that he felt it was working! So my advice, should you try a MEK inhibitor, is get a baseline eye exam and have them follow along very closely. As I understand, some of the other MEK trials did check eyes, but the company that I was with had never had a problem before.

Best wishes,

Nan in Nebaska