Newly diagnosed; Medicare making us wait for BRAF testing
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Newly diagnosed; Medicare making us wait for BRAF testing

› Forums › General Melanoma Community › Newly diagnosed; Medicare making us wait for BRAF testing

  • Post
    • March 31, 2014 at 6:15 pm
    laura b
    Participant

      My dad (69) had a mole removed from his scalp in September 2011 which was staged at IIC. After experiencing some chest pain two weeks ago, we learned after a PET and biopsy that the melanoma is back and contained to his lungs. The oncologist has suggested two treatment options – Yervoy and Vemurafanib, depending on BRAF testing. The doctor expected the results back on Friday, but when we called to find out, we learned Medicare is making us wait 14 days to submit another lab test, and then it will take another 3-5 days for results.

      It makes me feel so helpless. We know this is obviously aggressive, and it seems like days/weeks really matter. Does anyone know of a way to appeal to get it faster? 

      We are currently seeking treatment at the West Clinic in Memphis, but honestly, the more I think about how few resources they gave us, I would like to move on. It looks like MD Anderson offers many trials for melanoma. Does anyone else have thoughts of where we should look in our area? I feel limited in my ability to research since I have no test results to research and I know the genetic testing is so important. I also worry that they are only testing for BRAF, not other mutations, and will we have to wait weeks for that??

      I really appreciate any help that can be offered. This site has been extremely helpful, and has offered us hope when Dad's physician did not. Thank you all so much for that.

       

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    • Replies
        • March 31, 2014 at 7:37 pm
        Janner
        Participant

          My opinion only, if he only has MM in the lungs, I probably wouldn't go with Vemurafenib right now (requires BRAF+).  I'd be looking at PD1 trials or expanded access for PD1, other clinical trials or Yervoy.  I personally think the time for Vemu (or any of the BRAF drugs)is when there is extensive disease.  So if you eliminate the BRAF drugs (either because he doesn't have the mutation or you want to save them for later if it turns out he does have the mutation), you have enough information to do more searching to see what other options are out there.

          Now to your other point…. you may have to travel for trials.  NC, FL, TX – there are options but there may be others closer to home if you look (clinicaltrials.gov).  I would start looking at clinical trials or treaments that interest you and you think he will qualify for.  (Does he have other health conditions that may exclude him from clinical trials)?  Anyway, look for a treatment and then find the best location for you.  Certainly going to MDA will give you more options, but there may be similar options closer to home if you just do some research.

          Good luck!

          Janner

          • March 31, 2014 at 7:37 pm
          Janner
          Participant

            My opinion only, if he only has MM in the lungs, I probably wouldn't go with Vemurafenib right now (requires BRAF+).  I'd be looking at PD1 trials or expanded access for PD1, other clinical trials or Yervoy.  I personally think the time for Vemu (or any of the BRAF drugs)is when there is extensive disease.  So if you eliminate the BRAF drugs (either because he doesn't have the mutation or you want to save them for later if it turns out he does have the mutation), you have enough information to do more searching to see what other options are out there.

            Now to your other point…. you may have to travel for trials.  NC, FL, TX – there are options but there may be others closer to home if you look (clinicaltrials.gov).  I would start looking at clinical trials or treaments that interest you and you think he will qualify for.  (Does he have other health conditions that may exclude him from clinical trials)?  Anyway, look for a treatment and then find the best location for you.  Certainly going to MDA will give you more options, but there may be similar options closer to home if you just do some research.

            Good luck!

            Janner

            • March 31, 2014 at 7:37 pm
            Janner
            Participant

              My opinion only, if he only has MM in the lungs, I probably wouldn't go with Vemurafenib right now (requires BRAF+).  I'd be looking at PD1 trials or expanded access for PD1, other clinical trials or Yervoy.  I personally think the time for Vemu (or any of the BRAF drugs)is when there is extensive disease.  So if you eliminate the BRAF drugs (either because he doesn't have the mutation or you want to save them for later if it turns out he does have the mutation), you have enough information to do more searching to see what other options are out there.

              Now to your other point…. you may have to travel for trials.  NC, FL, TX – there are options but there may be others closer to home if you look (clinicaltrials.gov).  I would start looking at clinical trials or treaments that interest you and you think he will qualify for.  (Does he have other health conditions that may exclude him from clinical trials)?  Anyway, look for a treatment and then find the best location for you.  Certainly going to MDA will give you more options, but there may be similar options closer to home if you just do some research.

              Good luck!

              Janner

                • March 31, 2014 at 8:42 pm
                laura b
                Participant

                  Thank you very much for taking the time to respond. He's in relatively good health, just takes medicine for high blood pressure.

                  I'll start researching the PD1 trials and others just to have an idea. I'm also trying to get a fast decision appeal from Medicare now. 

                  Thank you again.

                  Laura

                  • March 31, 2014 at 8:42 pm
                  laura b
                  Participant

                    Thank you very much for taking the time to respond. He's in relatively good health, just takes medicine for high blood pressure.

                    I'll start researching the PD1 trials and others just to have an idea. I'm also trying to get a fast decision appeal from Medicare now. 

                    Thank you again.

                    Laura

                    • March 31, 2014 at 8:42 pm
                    laura b
                    Participant

                      Thank you very much for taking the time to respond. He's in relatively good health, just takes medicine for high blood pressure.

                      I'll start researching the PD1 trials and others just to have an idea. I'm also trying to get a fast decision appeal from Medicare now. 

                      Thank you again.

                      Laura

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