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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!

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      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

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      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

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      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

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        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!

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        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!

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        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!

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        jpg
        Participant

        Children's Hospital in Philadelphia would have the experts.

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        Participant

        Children's Hospital in Philadelphia would have the experts.

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        Participant

        Children's Hospital in Philadelphia would have the experts.

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      Kim K
      Participant

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

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      Kim K
      Participant

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

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        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!  

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        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!  

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        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!  

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      Kim K
      Participant

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

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      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.

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        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!

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        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. 

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        Coneflowers
        Participant

        Thank you so much for commenting.

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        Coneflowers
        Participant

        Thank you so much for commenting.

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        Coneflowers
        Participant

        Thank you so much for commenting.

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        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. 

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        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. 

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        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!

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        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!

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      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.

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      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.

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      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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        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. 

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        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. 

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        ldub
        Participant

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

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        ldub
        Participant

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

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        Coneflowers
        Participant

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

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        Coneflowers
        Participant

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

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        Coneflowers
        Participant

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

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        ldub
        Participant

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

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        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. 

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      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

       

      Loading spinner
      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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