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New to post finally! Have many questions!

Forums Pediatric & AYA Melanoma Community New to post finally! Have many questions!

  • Post
    Coneflowers
    Participant

      So I have been trying to sign up on here for what seems like forever! Not sure why I was having problems…maybe it was my old computer.  Anyway, was wondering if anyone can recommend a pediatric melanoma specialist?  Yes, have more questons, but will start with this…Thank you!

    Viewing 11 reply threads
    • Replies
        Fen
        Participant

          I'm so sorry you are dealing with melanoma.  Where are you located?  There are good melanoma centers all over the country so if you narrow it down you will get some recommendations.     Fen

            Coneflowers
            Participant

              Hi, we are at university of Michigan right now, but live in Indiana.

              My daughter was born with it, and she also has a rare type. So I am searching for a place that might have seen this before. Yes, I know how crazy this sounds but it is true unfortunately.  Her doctor said she did not want to say she was one in a million, but she pretty much it…

              Thank you!

              jpg
              Participant

                Children's Hospital in Philadelphia would have the experts.

                jpg
                Participant

                  Children's Hospital in Philadelphia would have the experts.

                  jpg
                  Participant

                    Children's Hospital in Philadelphia would have the experts.

                    Coneflowers
                    Participant

                      Hi, we are at university of Michigan right now, but live in Indiana.

                      My daughter was born with it, and she also has a rare type. So I am searching for a place that might have seen this before. Yes, I know how crazy this sounds but it is true unfortunately.  Her doctor said she did not want to say she was one in a million, but she pretty much it…

                      Thank you!

                      Coneflowers
                      Participant

                        Hi, we are at university of Michigan right now, but live in Indiana.

                        My daughter was born with it, and she also has a rare type. So I am searching for a place that might have seen this before. Yes, I know how crazy this sounds but it is true unfortunately.  Her doctor said she did not want to say she was one in a million, but she pretty much it…

                        Thank you!

                      Fen
                      Participant

                        I'm so sorry you are dealing with melanoma.  Where are you located?  There are good melanoma centers all over the country so if you narrow it down you will get some recommendations.     Fen

                        Fen
                        Participant

                          I'm so sorry you are dealing with melanoma.  Where are you located?  There are good melanoma centers all over the country so if you narrow it down you will get some recommendations.     Fen

                          Kim K
                          Participant

                            St. Jude's also has worked on pediatric melanoma cases as well.

                            Kim K
                            Participant

                              St. Jude's also has worked on pediatric melanoma cases as well.

                                Coneflowers
                                Participant

                                  We tried to get her in at St. Jude but they would only do a consult. She has a rare sub type called pigment synthesizing melanoma. It has already spread and she has started opdivo. I just really need to get her somewhere that has seen this before. Thank you for commenting!  

                                  Coneflowers
                                  Participant

                                    We tried to get her in at St. Jude but they would only do a consult. She has a rare sub type called pigment synthesizing melanoma. It has already spread and she has started opdivo. I just really need to get her somewhere that has seen this before. Thank you for commenting!  

                                    Coneflowers
                                    Participant

                                      We tried to get her in at St. Jude but they would only do a consult. She has a rare sub type called pigment synthesizing melanoma. It has already spread and she has started opdivo. I just really need to get her somewhere that has seen this before. Thank you for commenting!  

                                    Kim K
                                    Participant

                                      St. Jude's also has worked on pediatric melanoma cases as well.

                                      kylez
                                      Participant

                                        As much as we've been slamming MD Anderson here on MPIP lately, I wonder if they have expertise in your child's specific disease type. I've heard of them having expertise in some other rare subtypes. 

                                        They do seem to have a specialty for pediatric melanoma. See this page, http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/childhood-melanoma/index.html.

                                        If you do go to MDA, realize you may have to ride herd on their business office on some issues like insurance approvals. But they seem to have some very specific areas of expertise.

                                        kylez
                                        Participant

                                          As much as we've been slamming MD Anderson here on MPIP lately, I wonder if they have expertise in your child's specific disease type. I've heard of them having expertise in some other rare subtypes. 

                                          They do seem to have a specialty for pediatric melanoma. See this page, http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/childhood-melanoma/index.html.

                                          If you do go to MDA, realize you may have to ride herd on their business office on some issues like insurance approvals. But they seem to have some very specific areas of expertise.

                                            Coneflowers
                                            Participant

                                              We have been thinking about trying to go to MD Anderson but have heard some not so great stuff. We have also thought about dana fabor / bostons childrens. Does anyone know anything about them by chance? Thank you!

                                              Coneflowers
                                              Participant

                                                We have been thinking about trying to go to MD Anderson but have heard some not so great stuff. We have also thought about dana fabor / bostons childrens. Does anyone know anything about them by chance? Thank you!

                                                Coneflowers
                                                Participant

                                                  We have been thinking about trying to go to MD Anderson but have heard some not so great stuff. We have also thought about dana fabor / bostons childrens. Does anyone know anything about them by chance? Thank you!

                                                  kylez
                                                  Participant

                                                    It woould be a shame if those threads on MDA discouraged you from seeing someone there, especially if there is an MDA doc who has some experience treating your daughter's rare melanoma type.

                                                    My takeway from those discussions (and I've been there once) is that the place is very big, and sometimes your case can get bogged down in administration. If you're healthy enough to be on top of it (and as parents you probably are) you can likely make the system work for you.

                                                    I also know couple of people who were happy with the care they got at Dana Farber. 

                                                    kylez
                                                    Participant

                                                      It woould be a shame if those threads on MDA discouraged you from seeing someone there, especially if there is an MDA doc who has some experience treating your daughter's rare melanoma type.

                                                      My takeway from those discussions (and I've been there once) is that the place is very big, and sometimes your case can get bogged down in administration. If you're healthy enough to be on top of it (and as parents you probably are) you can likely make the system work for you.

                                                      I also know couple of people who were happy with the care they got at Dana Farber. 

                                                      kylez
                                                      Participant

                                                        It woould be a shame if those threads on MDA discouraged you from seeing someone there, especially if there is an MDA doc who has some experience treating your daughter's rare melanoma type.

                                                        My takeway from those discussions (and I've been there once) is that the place is very big, and sometimes your case can get bogged down in administration. If you're healthy enough to be on top of it (and as parents you probably are) you can likely make the system work for you.

                                                        I also know couple of people who were happy with the care they got at Dana Farber. 

                                                        Coneflowers
                                                        Participant

                                                          Thank you so much for commenting.

                                                          Coneflowers
                                                          Participant

                                                            Thank you so much for commenting.

                                                            Coneflowers
                                                            Participant

                                                              Thank you so much for commenting.

                                                            kylez
                                                            Participant

                                                              As much as we've been slamming MD Anderson here on MPIP lately, I wonder if they have expertise in your child's specific disease type. I've heard of them having expertise in some other rare subtypes. 

                                                              They do seem to have a specialty for pediatric melanoma. See this page, http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/childhood-melanoma/index.html.

                                                              If you do go to MDA, realize you may have to ride herd on their business office on some issues like insurance approvals. But they seem to have some very specific areas of expertise.

                                                              ldub
                                                              Participant

                                                                Hi – I don't know which facility would be best for your child, but this physician Dr. Richardson (contact information below) who trained at Mass General has written one of the only review papers on the rare subtype of melanoma you are dealing with – pigment synthesizing melanoma.  I am willing to bet if you contacted his office, he would have some ideas or put could you on a path to a clinician who has familarity with your child's specific kind of cancer.  Good luck.

                                                                 

                                                                Stephen K. Richardson, MD

                                                                Dermatology

                                                                Richardson Stephen 1459

                                                                Office Locations

                                                                Dermatology Associates of Tallahassee, P.A.

                                                                1707 Riggins Road
                                                                Building A
                                                                Tallahassee, FL 32308
                                                                Phone: 850-877-4134

                                                                 

                                                                ldub
                                                                Participant

                                                                  Hi – I don't know which facility would be best for your child, but this physician Dr. Richardson (contact information below) who trained at Mass General has written one of the only review papers on the rare subtype of melanoma you are dealing with – pigment synthesizing melanoma.  I am willing to bet if you contacted his office, he would have some ideas or put could you on a path to a clinician who has familarity with your child's specific kind of cancer.  Good luck.

                                                                   

                                                                  Stephen K. Richardson, MD

                                                                  Dermatology

                                                                  Richardson Stephen 1459

                                                                  Office Locations

                                                                  Dermatology Associates of Tallahassee, P.A.

                                                                  1707 Riggins Road
                                                                  Building A
                                                                  Tallahassee, FL 32308
                                                                  Phone: 850-877-4134

                                                                   

                                                                    Coneflowers
                                                                    Participant

                                                                      Thank you so very much! I will contact them today! I am going to post a new thread and see if anyone else chimes in. 

                                                                      ldub
                                                                      Participant

                                                                        You are welcome!  I truly hope that he or someone else is able to help you find a way forward with this.

                                                                        Coneflowers
                                                                        Participant

                                                                          I called and left a message for his nurse. Thanks again!

                                                                          Coneflowers
                                                                          Participant

                                                                            I called and left a message for his nurse. Thanks again!

                                                                            Coneflowers
                                                                            Participant

                                                                              I called and left a message for his nurse. Thanks again!

                                                                              ldub
                                                                              Participant

                                                                                You are welcome!  I truly hope that he or someone else is able to help you find a way forward with this.

                                                                                ldub
                                                                                Participant

                                                                                  You are welcome!  I truly hope that he or someone else is able to help you find a way forward with this.

                                                                                  Coneflowers
                                                                                  Participant

                                                                                    Thank you so very much! I will contact them today! I am going to post a new thread and see if anyone else chimes in. 

                                                                                    Coneflowers
                                                                                    Participant

                                                                                      Thank you so very much! I will contact them today! I am going to post a new thread and see if anyone else chimes in. 

                                                                                    ldub
                                                                                    Participant

                                                                                      Hi – I don't know which facility would be best for your child, but this physician Dr. Richardson (contact information below) who trained at Mass General has written one of the only review papers on the rare subtype of melanoma you are dealing with – pigment synthesizing melanoma.  I am willing to bet if you contacted his office, he would have some ideas or put could you on a path to a clinician who has familarity with your child's specific kind of cancer.  Good luck.

                                                                                       

                                                                                      Stephen K. Richardson, MD

                                                                                      Dermatology

                                                                                      Richardson Stephen 1459

                                                                                      Office Locations

                                                                                      Dermatology Associates of Tallahassee, P.A.

                                                                                      1707 Riggins Road
                                                                                      Building A
                                                                                      Tallahassee, FL 32308
                                                                                      Phone: 850-877-4134

                                                                                       

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