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looking for parents of young (under 10) melanoma patients
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looking for parents of young (under 10) melanoma patients

› Forums › General Melanoma Community › looking for parents of young (under 10) melanoma patients

  • Post
    • December 15, 2015 at 3:44 am
    Jhobbsfamily6
    Participant

      Hi, my 5 year old daughter was diagnosed with malignant melanoma (conventional) on her chest/abdomen in May and I'm looking to connect with other parents in similar situations.  Following a very large wide excision, the currently has NED but her oncologist last week pointed out a few spots she wants us to watch very closely and it's making me relive the last 6 months.  Our dermatologist has said that this will come back (given her age and location, they are presuming a genetic defect in her immune system).  Thanks in advance for sharing your story and connecting!

      Jenny

    Viewing 5 reply threads
    • Replies
        • December 15, 2015 at 3:59 am
        Momofjake
        Participant

          Jenny, 

          first let me say j am just so sorry. This is a world we never dreamed we would be in with our beautiful kids. My son was 17, now 18. Much older, still so shocking and it's been very hard. He is quite progressed in 15 months. 

          My thoughts are to find a melanoma specialist!! The specialists in cancer hospitals are up on all the latest treatments and protocols. This is just something that can change overnight. And in our experience the chemo, radiation, interferon etc were very harsh and totally ineffective. In fact as you go into these they tell you it adds nothing to life expectancy. I wish we could have skipped all that and go straight to immune therapy!!!! 

          Well, other than that, I just hope you have good support and truth is we all have our own journeys, your child may be just fine!! None of us knows how this will go. So we pray, we support each other and we just keep trying!! 

          Kerri

          • December 15, 2015 at 3:59 am
          Momofjake
          Participant

            Jenny, 

            first let me say j am just so sorry. This is a world we never dreamed we would be in with our beautiful kids. My son was 17, now 18. Much older, still so shocking and it's been very hard. He is quite progressed in 15 months. 

            My thoughts are to find a melanoma specialist!! The specialists in cancer hospitals are up on all the latest treatments and protocols. This is just something that can change overnight. And in our experience the chemo, radiation, interferon etc were very harsh and totally ineffective. In fact as you go into these they tell you it adds nothing to life expectancy. I wish we could have skipped all that and go straight to immune therapy!!!! 

            Well, other than that, I just hope you have good support and truth is we all have our own journeys, your child may be just fine!! None of us knows how this will go. So we pray, we support each other and we just keep trying!! 

            Kerri

            • December 15, 2015 at 3:59 am
            Momofjake
            Participant

              Jenny, 

              first let me say j am just so sorry. This is a world we never dreamed we would be in with our beautiful kids. My son was 17, now 18. Much older, still so shocking and it's been very hard. He is quite progressed in 15 months. 

              My thoughts are to find a melanoma specialist!! The specialists in cancer hospitals are up on all the latest treatments and protocols. This is just something that can change overnight. And in our experience the chemo, radiation, interferon etc were very harsh and totally ineffective. In fact as you go into these they tell you it adds nothing to life expectancy. I wish we could have skipped all that and go straight to immune therapy!!!! 

              Well, other than that, I just hope you have good support and truth is we all have our own journeys, your child may be just fine!! None of us knows how this will go. So we pray, we support each other and we just keep trying!! 

              Kerri

                • December 15, 2015 at 2:42 pm
                Jhobbsfamily6
                Participant

                  Thanks, Kerri!  We are so blessed that we have a new St. Jude affiliate nearby (became an affiliate 3 weeks before she was diagnosed) so feel we have a strong team that is up to date on the latest advances.  Tell me about immune therapy.  My daughter was started on immune globulin in July, partially due to the melanoma but also because she had low IgG levels.  

                  • December 15, 2015 at 2:42 pm
                  Jhobbsfamily6
                  Participant

                    Thanks, Kerri!  We are so blessed that we have a new St. Jude affiliate nearby (became an affiliate 3 weeks before she was diagnosed) so feel we have a strong team that is up to date on the latest advances.  Tell me about immune therapy.  My daughter was started on immune globulin in July, partially due to the melanoma but also because she had low IgG levels.  

                    • December 15, 2015 at 2:42 pm
                    Jhobbsfamily6
                    Participant

                      Thanks, Kerri!  We are so blessed that we have a new St. Jude affiliate nearby (became an affiliate 3 weeks before she was diagnosed) so feel we have a strong team that is up to date on the latest advances.  Tell me about immune therapy.  My daughter was started on immune globulin in July, partially due to the melanoma but also because she had low IgG levels.  

                      • December 15, 2015 at 3:07 pm
                      Sce1
                      Participant

                        Hello Kerri. I have sent you a message xxx 

                        • December 15, 2015 at 3:07 pm
                        Sce1
                        Participant

                          Hello Kerri. I have sent you a message xxx 

                          • December 15, 2015 at 3:07 pm
                          Sce1
                          Participant

                            Hello Kerri. I have sent you a message xxx 

                            • December 15, 2015 at 3:08 pm
                            Sce1
                            Participant

                              Apologies I meant I have sent Jenny a message xx

                              • December 15, 2015 at 3:08 pm
                              Sce1
                              Participant

                                Apologies I meant I have sent Jenny a message xx

                                • December 15, 2015 at 3:08 pm
                                Sce1
                                Participant

                                  Apologies I meant I have sent Jenny a message xx

                                • December 21, 2015 at 10:01 am
                                Coneflowers
                                Participant

                                  Hi Jenny,

                                  My daughter has melanoma, she was born with it. Which is extremely rare. She is currently on opdivio. Sending you a message.

                                  • December 21, 2015 at 10:01 am
                                  Coneflowers
                                  Participant

                                    Hi Jenny,

                                    My daughter has melanoma, she was born with it. Which is extremely rare. She is currently on opdivio. Sending you a message.

                                    • December 21, 2015 at 10:01 am
                                    Coneflowers
                                    Participant

                                      Hi Jenny,

                                      My daughter has melanoma, she was born with it. Which is extremely rare. She is currently on opdivio. Sending you a message.

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