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Momofjake

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      Momofjake
      Participant
        I haven’t logged in here in a really long time….was so sorry to hear you are struggling! We spent 6 months there with Hamid. You are in good hands and I am hoping to hear an update soon! Prayers Mike!! ❤️
        Kerri
        Momofjake
        Participant

          Okay!! Where have you been??? My son was also diagnosed at 17. He is 21 now, but you are 30!!! This is awesome! Jake has also done all those treatments and they were TOUGH!! He is doing okay! Not clear but plugging along. I am curious how life is going for you?? Career, when did you leave home or did you? Any relationships? These are all things Jake wants but stupid Mel gets in his way! 

          So happy you are NED!! Enjoy!!!

          Kerri B

          Momofjake
          Participant

            Thanks! Pretty funny. I am glad we are not the only ones who have seen the crazy side of trials. Jake did his first one recently and it was not the best experience! I know many here have had their lives saved and I know we need them! It’s just hard to see the crap involved too! Good to have some humor on the topic:) 

            Best,

            Kerri

            Momofjake
            Participant

              I have appreciated this thread. Strangely I used to be more active here, but the loss of Artie was hard…and others since. I try not too look too often because I worry. Sept 12, 2014 I fell to my knees and breath left my chest when a doctor told me my 17 year old soccer boy had a cancer I had never heard of. He was still coming out of surgery and I was alone to go help him wake up. They offered me a juice box. I don’t know why I remember that. Apple juice. I don’t even like apple juice. I had to get control. I had to call his dad, we were divorced when he was 3. I always wondered why we had such an easy relationship still. They gave Jake roughly a year as they assessed his tumors etc. Spine, liver, lungs, bones, muscles, and just all over. 

              I couldn’t imagine helping him go. I couldn’t imagine my life without him in it. But I did have 3am runs in the dark where I felt like you. I just wanted to know. 

              Jake is 21 now. I have watched him endure things I have never had to do at 50. I have watched crushing disappointment as treatments failed.  He has fought to keep his identity and tells people he is all better, or that the scars are from a motorcycle accident. Haha! He lived in Hawaii for 6 glorious months! He skis often. I think he dates a little but I am not privledge to that info! Jake has brain mets and I don’t think there is a part of his body that hasn’t had a tumor including his heart…but Jake believes he will win! He hates living at home, but he makes the most of it all! He inspires me! We don’t complain about much around here, and we all live more and better!! 

              This probably has nothing to do with your question! But I just think it’s a natural place to be. I also think you process all of that and it’s possible to come out of it happier:) 

              Happy 2019!! May it be a year of miracles for many!!

              Kerri

              Momofjake
              Participant

                Thank you for the update and the recap. You have always been the pack leader offering needed information when many of us need options and support. 16 years is a miracle and we love stories with miracles here!! Sorry for this last round you suffered, once again you are sharing your fight and we are all in it with you. There sure is a bond in suffering and surviving! 

                Prayers as always!! 

                Kerri B

                Momofjake
                Participant

                  Hey Mike,

                  i just wanted you to know that only you peeps trying to cope with impossible choices and years of trauma can know the anxieties you get. I know Jake has several now and last week he spent many hours a day with his heart racing like crazy!!! He was stressed about stuff! He has it over hospital foods and smells and we can’t ever mention the word nausea!!! He instantly feels sick. So so many things he tries to hide, or maybe he would say he now hates himself for them. He gets mad at me about melanoma too….not rational he knows, but rational flew out the window years ago! It’s okay! It’s actually normal. You’re stuff is super hard and you get passes on the stuff that is just too hard some days!

                  prayers always Mike! 

                  Kerri

                  Momofjake
                  Participant

                    Prayers Mike!! I will be thinking about you!! 

                    Kerri

                    Momofjake
                    Participant

                      Hey Jenny!

                      we are in the same boat! In an Uber as I write this. My husband drove the 45 min to the air port, then 2 hr flight, then 40 min Uber to the Hampton. Then 8am infusion for Jake. It’s a trial with a pembro cousin drug and an inhibitor called C-met(I may be forgetting from my brain being fried). Jake has been tired and the pills give him some nausea. He has lost another 6lbs and he has several new tumors we see. It’s been 5 weeks. We meet w the Dr today to look at other options. I hope yours works for you!! We have sure put lots of money into travel! But working on some medical discounts this week. And taking Jake to Hawaii to NOT think about cancer for a week! Good luck❤️

                      Momofjake
                      Participant

                        Bill,

                        All good news! Thanks for the update. Always good to hear how you are doing and even better when things are going wel. Happy you completed the TIL trial and praying for lasting results!!!!

                        Kerri

                        Momofjake
                        Participant

                          Thank you.

                          Love this forum. 

                          Good information and great support and friendship. 

                          Jake is up and down this week…taking a break going back to Hawaii for a week where he lived. Then scan and find that “silver bullet” BrianP told Jake he could find!

                          this is the one place where people’s thoughts are real you really do get it. 

                          Prayers and love, 

                          Kerri

                          Momofjake
                          Participant

                            Thank you! I am in desperate need of good information RIGHT NOW for Jake. We are in need of something and the doors keep closing! This board is so important and so often I cannot post! It’s impossible!!!!! When there’s no one to trust and we aren’t sure where to turn….I turn here. People who have done the trial, or treatment, or have studied for themselves or their loved one. We need this place. 

                            Thanks. Hope you are feeling a little better and that you are finding your answers. 

                            Kerri

                            Momofjake
                            Participant

                              Tex,

                              Between your win and BrianP telling Jake to “keep looking for that silver bullet” I find some renewed hope. I am with Maureen right now…in the past I just knew Jake would get over the “hump” and get that NED scan. We just finished year 4. He has done: 7 surgeries, biochemo, interferon, radiation, pembro, ipi, Mek/Taf, and the beast pushes through them all. This time it’s brain, heart, bones, liver, muscles…he has the scars, bald part of his head, vitiligo, and says he is tired like an 80 year old man. Now he is on his first clinical trial in LA w Hamid. C-met with an ipi like drug. He is waiting for BrianP’s trial to open again as well.

                              He is 21 now. He is quiet. He just signed up for a winter tennis league!! He just finished another online class. He believes. You say “IT” has vulnerabilities….okay!! All of you battling away truly amaze me!! You find your fight over and over and over. Those of us who are with you are in awe of you and we love you and we will fight and believe with you! It’s all we can do. We hope it helps and we hope for a scan like you got today!! 

                              Thank you very much for sharing and encouraging! 

                              Cheers to your awesome scan, and many more to come!!

                              Kerri

                              Momofjake
                              Participant

                                Always searching….thank you Celeste! Prayers your way always. 

                                Kerri

                                Momofjake
                                Participant
                                  Celeste,

                                  I don’t know if you remember Jake or not, but I just wanted to give one last update. Jake did it all. He had a heavy tumor load for many years but managed a lot of living in his short life. He would be 24 on May 20th. His life since diagnosis was never easy, but man did he do it well!!

                                  I am laying by him now in his final hours. He has open and fungated tumors that are huge on his face, head, neck and chest. Jake got a real rough ending. Please pray for peace for him now as he gets to through this last part. We have him home and are doing our best. To this moment Jake has yet to complain…almost 7 years without complaint. My hero forever!
                                  Thanks for your constant help here. You were equal help as doctors on many occasions for me. I hope you are well, also our many fighters on their path. What strength they show, may they win their battles🙏🙏

                                  With admiration,

                                  Kerri-mom of Jake

                                  Momofjake
                                  Participant

                                    K. I will look into this. Turning over all the stones I can find right now. Something will make sense…he usually knows what he wants once he sees it and thinks it over. Just have to find the best options. 

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