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Trials for the young?
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Trials for the young?

› Forums › Pediatric & AYA Melanoma Community › Trials for the young?

  • Post
    • September 20, 2014 at 11:51 am
    JerryfromFauq
    Participant

      Malignant Melanoma in Teenagers and Young Adults; Kolandijan N, Wei C, Burke A, Bedikian A; Journal of Pediatric Hematology/Oncology (Aug 2014)

      BACKGROUND: This study compares the natural history and treatment outcomes of cutaneous melanoma in teenagers and young adults to determine if exclusion of teenagers from investigative trials is justified.

      PATIENTS AND METHODS: This is a chart review of patients between the ages of 13 and 40 years treated at The University of Texas MD Anderson Cancer Center for melanoma. Data related to the natural history and treatment outcomes were collected. Statistical tools were used to compare characteristics between teenagers and young adults. Cox proportional hazard models were utilized to examine the association between age group and overall survival.

      RESULTS: Of the 476 patients, 109 were teenagers and 367 were young adults. Both groups had comparable disease stage, pathology, and rates of metastasis. Initial disease stage and pathology significantly influenced survival. Sixty-six of 452 patients with skin melanoma developed metastasis. Teenagers survived better than young adults from diagnosis of the skin primary and after development of systemic metastasis. Teenagers tolerated and benefited from interleukin-2-based systemic therapy and targeted therapies as well as the young adults.

      CONCLUSIONS: Because of the similarities in natural history and treatment outcomes between teenage and young adult patients, it is recommended that teenage patients be officially enrolled on adult melanoma therapeutic trials.
       

       

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    • Replies
        • September 21, 2014 at 5:59 pm
        Tim–MRF
        Guest

          Jerry:

          Thanks for posting this message. It is timely, given the meeting we had last weekend for families dealing with pediatric melanoma. The youngest patient there was 15 months; the oldest was 13 years. I am aware of a couple of pediatric melanoma trials that are open, but they specify patients between the ages of 12 and 18. This study by the MDA team suggests that this population is similar to the adult population.  I don't believe any trials are being done in the younger group. Since nothing is studied in that group, basically all treatment is done off-label.

          Tim–MRF

            • September 23, 2014 at 9:36 pm
            tbmorgan
            Participant

              Tim,

              My name is Tobin Morgan and I am new to the forum.  My 13 month old son was diagnosed with congenital malignant melanoma at birth.  I was so disappointed to find out late about MRF and the meeting you had just this week.  My current pediatric oncologist is not a melanoma expert given the rarity and I am having to do most of the research myself.

              My son had a 2 cm x 5 cm x 7 cm tumor on the back of his cranium/dura at birth.  He has had two brain surgeries and has developed 30 to 50 skins lesions over the past year.

              He is currently being treated and considered stable as the cancer appears to be slow growing, but I am very afraid.  No one is talking cure, my doctor has said that he is not an expert and says that my son is only one of his many patients and he is glad I research because he does not have the time.

              I need to find a pediatric melanoma expert that is willing to put the time and energy into my son to save him.  He is doing so well right now, no developmental issues, no side affects from the cancer, growing, walking, thriving.

              He is currently taking an oral dose of Temozolomide 100 mg day for 5 days once a month, and 2 mg of Everolimus (Afinitor) every day.

              Any advice/ referrals would be appreciated.

               

              Tobin

               

              • September 26, 2014 at 6:40 am
              JerryfromFauq
              Participant

                TB, we got to get something going good for a guy with the TJ initials,  (My Fathers, mine and all my children's)

                You may want to check out this:    https://www.facebook.com/ChristiansSpecialSpots?ref=stream     Christion just turned 18 months and has had melanoma for a while,  His Mother is Tanya Kennedy and has a Facebok page under her name.     Christian is in Childrens hospital and is currently undergoing Yervoy treatments.  sIt has been rough on him, but looks like he may be responding favorably to it.   If you need anymore help contactiing Tanya, let me know.  My Email is  "[email protected]"

                • September 28, 2014 at 5:54 am
                tbmorgan
                Participant

                  I just read the post about young Christian and am lying in bed writing this with tears in my eyes   What a sweet boy.  I went and read his story on Facebook.  An angel on earth.  I will pray for his family.  Getting my materials together for MD Anderson.  Started the registration process with them Friday.  Will get TJ's records together Monday. TJ got to pet some bunnies and chickens at a small petting zoo today.  He laughed and played all day today, a great one.

                  • September 28, 2014 at 5:54 am
                  tbmorgan
                  Participant

                    I just read the post about young Christian and am lying in bed writing this with tears in my eyes   What a sweet boy.  I went and read his story on Facebook.  An angel on earth.  I will pray for his family.  Getting my materials together for MD Anderson.  Started the registration process with them Friday.  Will get TJ's records together Monday. TJ got to pet some bunnies and chickens at a small petting zoo today.  He laughed and played all day today, a great one.

                    • September 28, 2014 at 5:54 am
                    tbmorgan
                    Participant

                      I just read the post about young Christian and am lying in bed writing this with tears in my eyes   What a sweet boy.  I went and read his story on Facebook.  An angel on earth.  I will pray for his family.  Getting my materials together for MD Anderson.  Started the registration process with them Friday.  Will get TJ's records together Monday. TJ got to pet some bunnies and chickens at a small petting zoo today.  He laughed and played all day today, a great one.

                      • September 26, 2014 at 6:40 am
                      JerryfromFauq
                      Participant

                        TB, we got to get something going good for a guy with the TJ initials,  (My Fathers, mine and all my children's)

                        You may want to check out this:    https://www.facebook.com/ChristiansSpecialSpots?ref=stream     Christion just turned 18 months and has had melanoma for a while,  His Mother is Tanya Kennedy and has a Facebok page under her name.     Christian is in Childrens hospital and is currently undergoing Yervoy treatments.  sIt has been rough on him, but looks like he may be responding favorably to it.   If you need anymore help contactiing Tanya, let me know.  My Email is  "[email protected]"

                        • September 26, 2014 at 6:40 am
                        JerryfromFauq
                        Participant

                          TB, we got to get something going good for a guy with the TJ initials,  (My Fathers, mine and all my children's)

                          You may want to check out this:    https://www.facebook.com/ChristiansSpecialSpots?ref=stream     Christion just turned 18 months and has had melanoma for a while,  His Mother is Tanya Kennedy and has a Facebok page under her name.     Christian is in Childrens hospital and is currently undergoing Yervoy treatments.  sIt has been rough on him, but looks like he may be responding favorably to it.   If you need anymore help contactiing Tanya, let me know.  My Email is  "[email protected]"

                          • September 23, 2014 at 9:36 pm
                          tbmorgan
                          Participant

                            Tim,

                            My name is Tobin Morgan and I am new to the forum.  My 13 month old son was diagnosed with congenital malignant melanoma at birth.  I was so disappointed to find out late about MRF and the meeting you had just this week.  My current pediatric oncologist is not a melanoma expert given the rarity and I am having to do most of the research myself.

                            My son had a 2 cm x 5 cm x 7 cm tumor on the back of his cranium/dura at birth.  He has had two brain surgeries and has developed 30 to 50 skins lesions over the past year.

                            He is currently being treated and considered stable as the cancer appears to be slow growing, but I am very afraid.  No one is talking cure, my doctor has said that he is not an expert and says that my son is only one of his many patients and he is glad I research because he does not have the time.

                            I need to find a pediatric melanoma expert that is willing to put the time and energy into my son to save him.  He is doing so well right now, no developmental issues, no side affects from the cancer, growing, walking, thriving.

                            He is currently taking an oral dose of Temozolomide 100 mg day for 5 days once a month, and 2 mg of Everolimus (Afinitor) every day.

                            Any advice/ referrals would be appreciated.

                             

                            Tobin

                             

                            • September 23, 2014 at 9:36 pm
                            tbmorgan
                            Participant

                              Tim,

                              My name is Tobin Morgan and I am new to the forum.  My 13 month old son was diagnosed with congenital malignant melanoma at birth.  I was so disappointed to find out late about MRF and the meeting you had just this week.  My current pediatric oncologist is not a melanoma expert given the rarity and I am having to do most of the research myself.

                              My son had a 2 cm x 5 cm x 7 cm tumor on the back of his cranium/dura at birth.  He has had two brain surgeries and has developed 30 to 50 skins lesions over the past year.

                              He is currently being treated and considered stable as the cancer appears to be slow growing, but I am very afraid.  No one is talking cure, my doctor has said that he is not an expert and says that my son is only one of his many patients and he is glad I research because he does not have the time.

                              I need to find a pediatric melanoma expert that is willing to put the time and energy into my son to save him.  He is doing so well right now, no developmental issues, no side affects from the cancer, growing, walking, thriving.

                              He is currently taking an oral dose of Temozolomide 100 mg day for 5 days once a month, and 2 mg of Everolimus (Afinitor) every day.

                              Any advice/ referrals would be appreciated.

                               

                              Tobin

                               

                            • September 21, 2014 at 5:59 pm
                            Tim–MRF
                            Guest

                              Jerry:

                              Thanks for posting this message. It is timely, given the meeting we had last weekend for families dealing with pediatric melanoma. The youngest patient there was 15 months; the oldest was 13 years. I am aware of a couple of pediatric melanoma trials that are open, but they specify patients between the ages of 12 and 18. This study by the MDA team suggests that this population is similar to the adult population.  I don't believe any trials are being done in the younger group. Since nothing is studied in that group, basically all treatment is done off-label.

                              Tim–MRF

                              • September 21, 2014 at 5:59 pm
                              Tim–MRF
                              Guest

                                Jerry:

                                Thanks for posting this message. It is timely, given the meeting we had last weekend for families dealing with pediatric melanoma. The youngest patient there was 15 months; the oldest was 13 years. I am aware of a couple of pediatric melanoma trials that are open, but they specify patients between the ages of 12 and 18. This study by the MDA team suggests that this population is similar to the adult population.  I don't believe any trials are being done in the younger group. Since nothing is studied in that group, basically all treatment is done off-label.

                                Tim–MRF

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