Not sure of next step

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  • Post
    • February 12, 2015 at 4:44 am
    AshleyS
    Participant

      Alright. I'm extremely frustrated. I've shared my story before, so I won't go into all the details. Here's the "need to know":

       
      – Stage 1 diagnosis in August 2013 at age 29 following daughter's birth. 1.95 mm lesion on left calf ; skin graft. Sentinel node biopsy/PET showed nothing. 
       
      – 1 new melanoma on back in November 2013; .45 mm.
       
      – Found enlarged lymph node in July 2014 while 20 weeks pregnant. Biopsy showed metastatic melanoma. Lymphadenectomy at Mayo Clinic, MN; 15 nodes, 3 metastatic. Removed No PET because of pregnancy, but MRIs showed no other signs. 
       
      – PET in December 2014. Metastatic evidence on liver, right shoulder blade, lower lumbar, and left hip. Head MRI = clear. 50 gene panel = NRAS (61). 
       
      – Mayo came up with chemo (Taxol/Paraplatin) as treatment. Their justification was to slow growth before Yervoy. NP in charge of my case does specialize in melanoma but is a NP. 
       
      – I contacted MD Anderson. Got referral approved. However, they said they didn't want me down there until 4 weeks after chemo was completed. 
       
      – PET today at Mayo. New liver lesions, but no growth on other liver lesions. One new tumor on chest and slight growth to other tumors. NP is switching me to Yervoy. Keytruda next if ipi isn't successful. 
       
      What do you all think? Would you continue with Mayo? Should I push to go to Houston (I live in North Dakota)? Mayo says Houston probably won't take me unless I start a trial…do you think this is true? 
       
      I'm not in the medical field and feel so ignorant about all this. Any advice is appreciated!!!!
    Viewing 14 reply threads
    • Replies
        • February 12, 2015 at 12:00 pm
        SABKLYN
        Participant

          I'm not sure if what the NP is telling you is accurate.  However, if you are uncomfortable with the plan of care and would find some relief in a second opinion, I think it would be difficult to find a better place than MD Anderson.

          i started out at Emory and wasn't completely comfortable and decided to go to Sloan Kettering.  Even though I live 5 miles from Emory, I decided to seek treatment at Sloan.

          good luck!

          • February 12, 2015 at 12:00 pm
          SABKLYN
          Participant

            I'm not sure if what the NP is telling you is accurate.  However, if you are uncomfortable with the plan of care and would find some relief in a second opinion, I think it would be difficult to find a better place than MD Anderson.

            i started out at Emory and wasn't completely comfortable and decided to go to Sloan Kettering.  Even though I live 5 miles from Emory, I decided to seek treatment at Sloan.

            good luck!

            • February 12, 2015 at 12:00 pm
            SABKLYN
            Participant

              I'm not sure if what the NP is telling you is accurate.  However, if you are uncomfortable with the plan of care and would find some relief in a second opinion, I think it would be difficult to find a better place than MD Anderson.

              i started out at Emory and wasn't completely comfortable and decided to go to Sloan Kettering.  Even though I live 5 miles from Emory, I decided to seek treatment at Sloan.

              good luck!

              • February 12, 2015 at 2:24 pm
              arthurjedi007
              Participant

                I was treated with keytruda at mayo when it was on the extended access program. They have really great caring doctors. That being said I would get to msk in New York as my first choice as fast as I could. Md Anderson as second choice. But that is just my opinion.

                Artie

                • February 12, 2015 at 2:24 pm
                arthurjedi007
                Participant

                  I was treated with keytruda at mayo when it was on the extended access program. They have really great caring doctors. That being said I would get to msk in New York as my first choice as fast as I could. Md Anderson as second choice. But that is just my opinion.

                  Artie

                  • February 12, 2015 at 2:24 pm
                  arthurjedi007
                  Participant

                    I was treated with keytruda at mayo when it was on the extended access program. They have really great caring doctors. That being said I would get to msk in New York as my first choice as fast as I could. Md Anderson as second choice. But that is just my opinion.

                    Artie

                    • February 12, 2015 at 7:01 pm
                    Bubbles
                    Participant

                      Hey Ashley,

                      Not really sure why your provider didn't start you on Yervoy in the first place…but one can't undo the past.  The fact that they are going to start Yervoy now sounds good to me.  Unless you are in a trial, Yervoy is something you must try and fail before you can go on to the anti-PD1 products Nivolumab (Opdivo) or Pembrolizumab (Keytruda) due to the way they were aproved by the FDA.  Whether you wish to switch institutions is really a personal decision.  I would think about how comfortable I was with the provider at hand, whether there were any other provider options at the same location if I was not happy, and what was simply the easiest location for me to go to for treatment (including time, money, etc.).  Beyond that, it sounds like ipi (Yervoy) would be the treatment you would be given next no matter where you go unless you participate in a clinical trial. Not sure if that helps you much.  If you want to learn more about the treatment products you can search this site as well as my blog by typing your search word into the bubble at the top left.  I wish you my best.  Celeste

                      • February 12, 2015 at 7:01 pm
                      Bubbles
                      Participant

                        Hey Ashley,

                        Not really sure why your provider didn't start you on Yervoy in the first place…but one can't undo the past.  The fact that they are going to start Yervoy now sounds good to me.  Unless you are in a trial, Yervoy is something you must try and fail before you can go on to the anti-PD1 products Nivolumab (Opdivo) or Pembrolizumab (Keytruda) due to the way they were aproved by the FDA.  Whether you wish to switch institutions is really a personal decision.  I would think about how comfortable I was with the provider at hand, whether there were any other provider options at the same location if I was not happy, and what was simply the easiest location for me to go to for treatment (including time, money, etc.).  Beyond that, it sounds like ipi (Yervoy) would be the treatment you would be given next no matter where you go unless you participate in a clinical trial. Not sure if that helps you much.  If you want to learn more about the treatment products you can search this site as well as my blog by typing your search word into the bubble at the top left.  I wish you my best.  Celeste

                        • February 12, 2015 at 7:01 pm
                        Bubbles
                        Participant

                          Hey Ashley,

                          Not really sure why your provider didn't start you on Yervoy in the first place…but one can't undo the past.  The fact that they are going to start Yervoy now sounds good to me.  Unless you are in a trial, Yervoy is something you must try and fail before you can go on to the anti-PD1 products Nivolumab (Opdivo) or Pembrolizumab (Keytruda) due to the way they were aproved by the FDA.  Whether you wish to switch institutions is really a personal decision.  I would think about how comfortable I was with the provider at hand, whether there were any other provider options at the same location if I was not happy, and what was simply the easiest location for me to go to for treatment (including time, money, etc.).  Beyond that, it sounds like ipi (Yervoy) would be the treatment you would be given next no matter where you go unless you participate in a clinical trial. Not sure if that helps you much.  If you want to learn more about the treatment products you can search this site as well as my blog by typing your search word into the bubble at the top left.  I wish you my best.  Celeste

                          • February 12, 2015 at 9:59 pm
                          casagrayson
                          Participant

                            Ashley,

                            Am I understanding you correctly … that the person in charge of your case is a Nurse Practitioner?  Do you not get seen by an MD there at all?  (Don't get me wrong.  I adore NPs and use one for the majority of my care.  However, if I were dealing with Stage 4 melanoma I would want first-hand access to a MD specializing in melanoma at a Melanoma Center of Excellence.)

                            • February 12, 2015 at 9:59 pm
                            casagrayson
                            Participant

                              Ashley,

                              Am I understanding you correctly … that the person in charge of your case is a Nurse Practitioner?  Do you not get seen by an MD there at all?  (Don't get me wrong.  I adore NPs and use one for the majority of my care.  However, if I were dealing with Stage 4 melanoma I would want first-hand access to a MD specializing in melanoma at a Melanoma Center of Excellence.)

                              • February 12, 2015 at 9:59 pm
                              casagrayson
                              Participant

                                Ashley,

                                Am I understanding you correctly … that the person in charge of your case is a Nurse Practitioner?  Do you not get seen by an MD there at all?  (Don't get me wrong.  I adore NPs and use one for the majority of my care.  However, if I were dealing with Stage 4 melanoma I would want first-hand access to a MD specializing in melanoma at a Melanoma Center of Excellence.)

                                • February 13, 2015 at 7:41 pm
                                AshleyS
                                Participant

                                  Thanks for the tips everyone! I got into MDA next week. I'm seeing Dr. Glitza. This makes me feel much more confident. 

                                  • February 13, 2015 at 7:41 pm
                                  AshleyS
                                  Participant

                                    Thanks for the tips everyone! I got into MDA next week. I'm seeing Dr. Glitza. This makes me feel much more confident. 

                                    • February 13, 2015 at 7:41 pm
                                    AshleyS
                                    Participant

                                      Thanks for the tips everyone! I got into MDA next week. I'm seeing Dr. Glitza. This makes me feel much more confident. 

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