MDA Trials-what do I need to know for consult?

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11/12/2010 9:20pm
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I've posted a few questions a wk or so ago.  We finally got the insurance to ok a consult, what do I need to ask/demand for treatment at MD Andersson?  My ftr has brain, lung, spleen, and liver mets.  He finished his WBRT on Monday.  I did ask his current oncologist to test for BRAF and he is positive, but I do not believe any other testing has occurred.   Thanks-I want to make the most of this visit!!!  Get him on a trial and get some quality of life.

Anyone here have surgery for brain mets?  No option given here currently (just in case no response to radiation).  

Thinking for him (IF he qualifies) the PLX4032 study vs IPI.   Or will they be big advocates and informative?  here his dr knows nothing other then WBRT and temedor.  

You can have the onc refer him to MDA, or you can call them yourself and and see if they will accept your ftr.

 

Jackie W

We got the acceptance form MDA last week, they wanted insurance acceptance and we got that today!!  yeah!

I would suggest that you ask nicely when you call, rather than be demanding.  They are super helpful there.  If you go with him, be sure to write questions down, so you can be organized.  I sounds like you are planning to go along, which would helpful.

It would also be good to learn more about the disease and possible treatments.  There is no study with PLX4032 vs Ipi, for example.  If you don't have the time or interest in doing homework, it is ok.  Just write down questions to ask and the answers.  If you go, you will be surprised (in a good way) at how much time you will have with the doctors.

Call the general number for MDA and ask for the Melanoma Clinic.  They will have you speak to a scheduler, who will help you set everything up.  Let them help you - they are really good.  Best wishes to you both.