Now what?

Posted By
6/2/2014 6:50pm
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Replies: 2

Finally got results of tests, pet showed several mets, 2 in lung 2 in liver, and several in tissue, mri of head came back clear. BRAF negative. What kind of treatment is available? VA is sending to IU medical center to see about clinical trials!  But she had said earlier he may not qualify for clinicals cause of the cancer in his eye not knowing if it is a second type of cancer or not. So far he has not had any kind of treatment at all, Don't know where to turn what kind of protocol is usually followed. The clinical trial is also a double blind plecabo one is that good or bad at this point I think he should have some kind of treatment instead of running a chance of getting nothing in clinical trials. Any help would be greatly appreciated. Thanks

shanemcdonald99 - (6/2/2014 - 8:40pm)


I have about the exact same thing, and was disqualified from any trials due to second cancer in thyroid.

So my oncologist thinks the best thing is to start yervoy and try to suppress the cancer in hopes for approval of the PD 1 drugs this year,  and then try that.

Being braf negative, yervoy was the only option.

best wishes to you.

I start yervoy tomorrow.




joelcairo - (6/3/2014 - 1:42pm)

I belatedly answered your post in the CURE OM section of the forum.

In a nutshell, I feel you need to press your doctors for a clear answer on whether the metastases are from cutaneous melanoma or uveal melanoma. This applies to the tumor in your eye and at least one of the mets in the liver or lungs.

I don't know if there is a formal test for this, but the genetic mutations and the overall pattern of gene expression are fairly different in the two types, so I have no doubt that it's possible. For one thing, about 80% or uveal melanomas will have a mutation in either the GNAQ or GNA11 gene. Perhaps the Castle Biosciences test for uveal melanoma could also be useful in this regard.

If it turns out you have uveal melanoma, you should have your doctors consult with Dr. Takami Sato in Philadelphia (or you could travel to Philly to be treated by him).

Having multiple foci is tough, but it may be worth eliminating them by ablation if the doctor doesn't want to engage in a series of more complex surgeries.

Personally I think Yervoy is a better option than any clinical trial I am aware of, unless you can get into one with Yervoy+Nivolumab, which is proving to be even more effective. Yervoy works, remarkably so in about 25% of patients, so putting a patient in a randomized study where they may receive placebo treatment is unacceptable.