MRF-Logo2019-Horizontal-RGB
MDA Trials-what do I need to know for consult?
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

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

› Forums › General Melanoma Community › MDA Trials-what do I need to know for consult?

  • Post
    • November 13, 2010 at 2:20 am
    naty
    Participant

      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.

      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.  

    Viewing 3 reply threads
    • Replies
        • November 13, 2010 at 2:43 am
        Jackie W
        Participant

          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

            • November 13, 2010 at 2:46 am
            naty
            Participant

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

              • November 13, 2010 at 2:46 am
              naty
              Participant

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

              • November 13, 2010 at 2:43 am
              Jackie W
              Participant

                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

                • November 13, 2010 at 3:22 am
                Jim in Denver
                Participant

                  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.

                  • November 13, 2010 at 3:22 am
                  Jim in Denver
                  Participant

                    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.

                Viewing 3 reply threads
                • You must be logged in to reply to this topic.
                About the MRF Patient Forum

                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.