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Jake—never fun decisions
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Jake—never fun decisions

› Forums › General Melanoma Community › Jake—never fun decisions

  • Post
    • September 7, 2018 at 10:21 pm
    Momofjake
    Participant

      Okay, here we go. 

      Braf meds are over. Our hospital lost all our specialists. So I got to Dr Hamid in LA. He got us in within 2 days and spent hours with us on TH. So we are now in LA from Utah looking at trials. TIL will be hard due to the surgery to remove a tumor. I want to hear how TIL worked for you guys and how you did going through it. I know it’s very rough. 

      They also have a “3 arm” trial with LAG-3 and anti-PD1. Ipi and pembro have never worked great for Jake. We will be here until Tues night. Hoping he chooses so he can get consented. It’s been a whirlwind with more brain mets we had to get stable with SRS and the ever fun bad news. Any age stinks, but doing this from 17-21 robs you of some big stuff. It’s crappy. 

      He us however bouncing back and we will have some fun at the beach! 

      Thanks! Prayers for all as always! 

      Kerri

    Viewing 5 reply threads
    • Replies
        • September 7, 2018 at 10:36 pm
        BrianP
        Participant

          So sorry you have these tough decisions again. If you and Jake are near a TV tonight tune in to the Stand Up To Cancer special. I’ll be there holding up a sign in Jake’s honor. 

          Brian

            • September 8, 2018 at 1:47 am
            Momofjake
            Participant

              We will look!! Wow! You are awesome! Hope you are well:) 

              • September 8, 2018 at 1:51 am
              Momofjake
              Participant

                It’s in Santa Monica?? We are in the Marriott in Santa Monica! 

                • September 8, 2018 at 5:14 am
                BrianP
                Participant

                  Hey Kerri,

                  If you watched the show I was the Marine pilot they featured toward the end of the show.  I had a sign up for Jake and Celeste but don't think I made it on the air.  I am staying at the Doubletreee in Culver City until Sunday.  We are probalby heading over to the Santa Monica Pier tomorrow.  If you have time and would like to have a quick meetup please email me at [email protected] and maybe we can work something out.

                  Brian

                  Brian

                  • September 8, 2018 at 8:51 pm
                  Momofjake
                  Participant

                    I emailed you:) 

                    • September 8, 2018 at 8:53 pm
                    Momofjake
                    Participant

                      I emailed you:) 

                      • September 8, 2018 at 8:53 pm
                      Momofjake
                      Participant

                        I emailed you:) 

                      • September 8, 2018 at 3:37 pm
                      KellyH
                      Participant

                        Hi Kerri. 

                        I read your post this morning and saw the age of your son when he was diagnosed….my son was just diagnosed in February 2018, Stage 3a…he is 17 years old. Just like Jake.  

                        It has been a whirlwind since then…I have spent so much time learning everything melanoma.  Decision making is never easy. And they are so young…I’m not sure about Jake at the beginning , but my son struggles a lot with this…he just does not understand the whole picture…his young age is not always a plus. He feels good and this is just “annoying”… he just wants to be normal again…

                        Fingers crossed that Jake gets into the Trial` and that he has excellent results!!!  You are right… although no one should  ever have to deal with all that melanoma brings…it stinks for sure to deal with it at such a young age…starting their young adult life with such a challenge is so unfair. 

                        Praying for you and your son!!!  

                        Kelly 🙂 

                         

                          • October 10, 2018 at 5:30 pm
                          sharonlynn210
                          Participant

                            My son was diagnosed 3c January 2018 and he was 18 and a senior in highschool.My world has forever changed.He just had his 10 th infusion last week of Keytruda.

                          • September 8, 2018 at 4:13 pm
                          ed williams
                          Participant

                            Hi Kerri, I would reach out to Bill (Mrsaxde) who posted just below yours on the forum. He just finished TILs not to long ago, would be able to give great perspective to you and Jake!!! 

                              • September 10, 2018 at 4:17 am
                              Momofjake
                              Participant

                                Bill emailed us:) And BrianP and Jake got to meet and talk for awhile! Perfect! 

                              • September 8, 2018 at 7:06 pm
                              dbJoe
                              Participant
                                  • September 10, 2018 at 8:49 pm
                                  Maureen038
                                  Participant

                                    Kerry,

                                        I will keep you and Jake in our prayers. I hope he finds a trial that is very successful for him!!

                                    Maureen

                                  • September 11, 2018 at 6:54 pm
                                  casagrayson
                                  Participant

                                    I think of you and Jake often…

                                    • September 16, 2018 at 2:36 pm
                                    Ridingaroundwith27Jennifers
                                    Participant

                                      Sorry to hear what you and Jake are going through.  This sucks at any age but more so at Jake's age.  I've had brain mets and SRS.  I hope Jake does well in the trial and is able to have some normal experiences for his age group.  Hopefully this will be something you and he can look back on and be glad it is over.

                                      Good wishes to you both,

                                      Jennifer

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