The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Jake’s scan

Forums General Melanoma Community Jake’s scan

  • Post
    Momofjake
    Participant

      Hi all,

      Took me awhile. Jake was disappointed in his scan results, but he got a "stable disease". It's not too bad. Hard part is the dr says the TAF has hit it's plateau and he wants Jake to start ipi now. Jake says he wants to try MEK. I don't even think it's an option. Our onc thinks the TAF alone only lasts an average of 6 mo and Jake is 4 months in. He says there are not other options, just ipi. Jake doesn't want ipi. Hates vitiligo. Onc also says the cancer can come back aggressively when it does. Jake is still very tired but looks good. Clear lungs, almost clear spine and so much improvement really shows! He played tennis today:) He also apologized to me on the way to his scans…it was emotional for him. Sept 12 marks two years. 17-19 yrs old sick. Hoping the TAF hold it back:) 

      thats our news….how are you Josh????

      Thanks for the scan support:)'Kerri

       

    Viewing 23 reply threads
    • Replies
        BrianP
        Participant

          Oh Kerri.  I'd call that an awesome report in my book.  So happy for your family.  Tough decisions coming up I know.  They're never easy.  Best of luck to you going forward.

          Brian

          BrianP
          Participant

            Oh Kerri.  I'd call that an awesome report in my book.  So happy for your family.  Tough decisions coming up I know.  They're never easy.  Best of luck to you going forward.

            Brian

            BrianP
            Participant

              Oh Kerri.  I'd call that an awesome report in my book.  So happy for your family.  Tough decisions coming up I know.  They're never easy.  Best of luck to you going forward.

              Brian

              MoiraM
              Participant

                So sorry for Jake. I hope he is able to be more positive about the scan results when he has had some time.

                I also hope he considers Ipi. His last option was my very first treatment. Because of my phobia, Ipi was the only treatment I would accept.

                Yes the chances of it working for an individual person is not high enough but there is that chance he will be a responder. I am a responder. I had two tumours over 2 cm diameter. They are now undetectable by scan.

                And I don't have vitiligo!

                Yes, there are side effects and, yes, it is like the side effect lottery but I honestly believe that the serious, long-term side effects, like mine, only happen in the people where the ipi is working. Believe me, no anterior pituitary function is a small price to pay for being NED. Also, very, very few responders have a side effect as serious as mine.

                The ipi infusions were not so bad, even for someone like me who is phobic of doctors/hospitals. Also there are only four of them. Again being honest, if it works I don't think the 'maintenence' doses make any difference.

                I dud 3mg/kg.

                MoiraM
                Participant

                  So sorry for Jake. I hope he is able to be more positive about the scan results when he has had some time.

                  I also hope he considers Ipi. His last option was my very first treatment. Because of my phobia, Ipi was the only treatment I would accept.

                  Yes the chances of it working for an individual person is not high enough but there is that chance he will be a responder. I am a responder. I had two tumours over 2 cm diameter. They are now undetectable by scan.

                  And I don't have vitiligo!

                  Yes, there are side effects and, yes, it is like the side effect lottery but I honestly believe that the serious, long-term side effects, like mine, only happen in the people where the ipi is working. Believe me, no anterior pituitary function is a small price to pay for being NED. Also, very, very few responders have a side effect as serious as mine.

                  The ipi infusions were not so bad, even for someone like me who is phobic of doctors/hospitals. Also there are only four of them. Again being honest, if it works I don't think the 'maintenence' doses make any difference.

                  I dud 3mg/kg.

                  MoiraM
                  Participant

                    So sorry for Jake. I hope he is able to be more positive about the scan results when he has had some time.

                    I also hope he considers Ipi. His last option was my very first treatment. Because of my phobia, Ipi was the only treatment I would accept.

                    Yes the chances of it working for an individual person is not high enough but there is that chance he will be a responder. I am a responder. I had two tumours over 2 cm diameter. They are now undetectable by scan.

                    And I don't have vitiligo!

                    Yes, there are side effects and, yes, it is like the side effect lottery but I honestly believe that the serious, long-term side effects, like mine, only happen in the people where the ipi is working. Believe me, no anterior pituitary function is a small price to pay for being NED. Also, very, very few responders have a side effect as serious as mine.

                    The ipi infusions were not so bad, even for someone like me who is phobic of doctors/hospitals. Also there are only four of them. Again being honest, if it works I don't think the 'maintenence' doses make any difference.

                    I dud 3mg/kg.

                    Bubbles
                    Participant

                      Glad for stability. Sorry it is not better. Put up  post recently that included all the posts and data related to vitiligo and its positive prognostic sign on the blog if interested…it includes a pic of a hot chick hanging with Beyonce at the MTV awards who has significant vitiligo (albeit from a different origin). Might make him feel better about his skin. Or not.  I understand how he feels about it on a personal level. Hang in there. Celeste

                       

                      Bubbles
                      Participant

                        Glad for stability. Sorry it is not better. Put up  post recently that included all the posts and data related to vitiligo and its positive prognostic sign on the blog if interested…it includes a pic of a hot chick hanging with Beyonce at the MTV awards who has significant vitiligo (albeit from a different origin). Might make him feel better about his skin. Or not.  I understand how he feels about it on a personal level. Hang in there. Celeste

                         

                        Bubbles
                        Participant

                          Glad for stability. Sorry it is not better. Put up  post recently that included all the posts and data related to vitiligo and its positive prognostic sign on the blog if interested…it includes a pic of a hot chick hanging with Beyonce at the MTV awards who has significant vitiligo (albeit from a different origin). Might make him feel better about his skin. Or not.  I understand how he feels about it on a personal level. Hang in there. Celeste

                           

                          jamieth29
                          Participant
                            Kerri if he does try ipi and is not a responder he can go back on taf. Starting and stopping braf drugs will not hurt him as far as response time. I have been on and off it since last year. August to Dec last year and April until now this year. Maybe he could add mek and taf at a lower dose to keep side effects at bay.I know it’s hard to decide when to come off it but before resistance makes sense to try something else. If it doesn’t work maybe use it as a bridge to next treatment. Has he tried ipi/nivo combo? People can respond to combo that have failed both separately.
                            jamieth29
                            Participant
                              Kerri if he does try ipi and is not a responder he can go back on taf. Starting and stopping braf drugs will not hurt him as far as response time. I have been on and off it since last year. August to Dec last year and April until now this year. Maybe he could add mek and taf at a lower dose to keep side effects at bay.I know it’s hard to decide when to come off it but before resistance makes sense to try something else. If it doesn’t work maybe use it as a bridge to next treatment. Has he tried ipi/nivo combo? People can respond to combo that have failed both separately.
                                Mat
                                Participant

                                  Agree with Jamie's suggestions here.

                                  Mat
                                  Participant

                                    Agree with Jamie's suggestions here.

                                    Mat
                                    Participant

                                      Agree with Jamie's suggestions here.

                                    jamieth29
                                    Participant
                                      Kerri if he does try ipi and is not a responder he can go back on taf. Starting and stopping braf drugs will not hurt him as far as response time. I have been on and off it since last year. August to Dec last year and April until now this year. Maybe he could add mek and taf at a lower dose to keep side effects at bay.I know it’s hard to decide when to come off it but before resistance makes sense to try something else. If it doesn’t work maybe use it as a bridge to next treatment. Has he tried ipi/nivo combo? People can respond to combo that have failed both separately.
                                      Rita and Charles
                                      Participant

                                        So good to hear news of Jake, and at least for this very moment – stable. Vitiligo can be hard for people to "love" to get, my husbands, back, chest, arms and just a bit creep up his neck – but it was the MEK/Taf working………….so we'll take it.  Once you get used to it – polka dots are acceptable if it means you keep the disease at bay.  I don't have any Ipi experiences to share, Charles has been off meds now since June [ after being on MEK/Taf for 9 months until his side effects became too hard to handle]- his July scan was great, and now we are counting the days until 10/4 for the next one to see how he is.

                                        It seems like a summer we all took a break and enjoyed where and when we could, until we need to get back in the fight. Day by day…………I think of you and Jake, hoping his bright future unfolds…………keep doing and fighting until the next new drug combo is found, stay alive to live.

                                        Rita 

                                        Rita and Charles
                                        Participant

                                          So good to hear news of Jake, and at least for this very moment – stable. Vitiligo can be hard for people to "love" to get, my husbands, back, chest, arms and just a bit creep up his neck – but it was the MEK/Taf working………….so we'll take it.  Once you get used to it – polka dots are acceptable if it means you keep the disease at bay.  I don't have any Ipi experiences to share, Charles has been off meds now since June [ after being on MEK/Taf for 9 months until his side effects became too hard to handle]- his July scan was great, and now we are counting the days until 10/4 for the next one to see how he is.

                                          It seems like a summer we all took a break and enjoyed where and when we could, until we need to get back in the fight. Day by day…………I think of you and Jake, hoping his bright future unfolds…………keep doing and fighting until the next new drug combo is found, stay alive to live.

                                          Rita 

                                          Rita and Charles
                                          Participant

                                            So good to hear news of Jake, and at least for this very moment – stable. Vitiligo can be hard for people to "love" to get, my husbands, back, chest, arms and just a bit creep up his neck – but it was the MEK/Taf working………….so we'll take it.  Once you get used to it – polka dots are acceptable if it means you keep the disease at bay.  I don't have any Ipi experiences to share, Charles has been off meds now since June [ after being on MEK/Taf for 9 months until his side effects became too hard to handle]- his July scan was great, and now we are counting the days until 10/4 for the next one to see how he is.

                                            It seems like a summer we all took a break and enjoyed where and when we could, until we need to get back in the fight. Day by day…………I think of you and Jake, hoping his bright future unfolds…………keep doing and fighting until the next new drug combo is found, stay alive to live.

                                            Rita 

                                            WithinMySkin
                                            Participant
                                              Hey Kerri! I know Jake is disappointed with the scan results, but stable is good news! Scans and results can be a very emotional time and I’m sure he’s ready to be done with this battle and out living life. Mel pushes our resilience and faith to the limits, and Jake has been through entirely too much for someone his age. Keep fighting, keep your head up, and just keep swimming!!

                                              You’re in my thoughts,
                                              Lauren

                                              WithinMySkin
                                              Participant
                                                Hey Kerri! I know Jake is disappointed with the scan results, but stable is good news! Scans and results can be a very emotional time and I’m sure he’s ready to be done with this battle and out living life. Mel pushes our resilience and faith to the limits, and Jake has been through entirely too much for someone his age. Keep fighting, keep your head up, and just keep swimming!!

                                                You’re in my thoughts,
                                                Lauren

                                                WithinMySkin
                                                Participant
                                                  Hey Kerri! I know Jake is disappointed with the scan results, but stable is good news! Scans and results can be a very emotional time and I’m sure he’s ready to be done with this battle and out living life. Mel pushes our resilience and faith to the limits, and Jake has been through entirely too much for someone his age. Keep fighting, keep your head up, and just keep swimming!!

                                                  You’re in my thoughts,
                                                  Lauren

                                                  triciad
                                                  Participant

                                                    Kerri,

                                                     

                                                    Forgive me for not knowing your son's history, so I don't  know if this is relevant.   My heart and prayers go out to you both.  

                                                    Last December, I had terrible scans.  Six brain mets, tumors in my spine, liver, lungs, abdomen, etc.  As my doctor said, "You are a mess."  I was put on Tafinlar and MEK.  My next scans…I was completely clear…NED!  It was a miracle.  I have been on this combo since December.  I teach first grade and haven't missed a day. My side effects have been minimal. I'm a little tired but I manage.  I'm also achy in my joints, but I still do everything that I used to do.

                                                    Please feel free to email me.  Jake is more than welcome to call me if he has any questions.  I'll be going for scans soon and will see what the doctor says.  I'm hoping to get off these drugs because I'm afraid the melanoma will mutate soon.   However, I'm confident that I wouldn't be writing to you now if I hadn't taken the combo.  I know every patient reacts differently, but maybe Jake will have the same success.

                                                    God bless,

                                                    Tricia

                                                    P.S.  I was diagnosed at 3B in July 2009. Previous treatments were – 1 year of Interferon, radiation, Leukine alone, Leukine with IPI, and Keytruda.

                                                     

                                                    triciad
                                                    Participant

                                                      Kerri,

                                                       

                                                      Forgive me for not knowing your son's history, so I don't  know if this is relevant.   My heart and prayers go out to you both.  

                                                      Last December, I had terrible scans.  Six brain mets, tumors in my spine, liver, lungs, abdomen, etc.  As my doctor said, "You are a mess."  I was put on Tafinlar and MEK.  My next scans…I was completely clear…NED!  It was a miracle.  I have been on this combo since December.  I teach first grade and haven't missed a day. My side effects have been minimal. I'm a little tired but I manage.  I'm also achy in my joints, but I still do everything that I used to do.

                                                      Please feel free to email me.  Jake is more than welcome to call me if he has any questions.  I'll be going for scans soon and will see what the doctor says.  I'm hoping to get off these drugs because I'm afraid the melanoma will mutate soon.   However, I'm confident that I wouldn't be writing to you now if I hadn't taken the combo.  I know every patient reacts differently, but maybe Jake will have the same success.

                                                      God bless,

                                                      Tricia

                                                      P.S.  I was diagnosed at 3B in July 2009. Previous treatments were – 1 year of Interferon, radiation, Leukine alone, Leukine with IPI, and Keytruda.

                                                       

                                                      triciad
                                                      Participant

                                                        Kerri,

                                                         

                                                        Forgive me for not knowing your son's history, so I don't  know if this is relevant.   My heart and prayers go out to you both.  

                                                        Last December, I had terrible scans.  Six brain mets, tumors in my spine, liver, lungs, abdomen, etc.  As my doctor said, "You are a mess."  I was put on Tafinlar and MEK.  My next scans…I was completely clear…NED!  It was a miracle.  I have been on this combo since December.  I teach first grade and haven't missed a day. My side effects have been minimal. I'm a little tired but I manage.  I'm also achy in my joints, but I still do everything that I used to do.

                                                        Please feel free to email me.  Jake is more than welcome to call me if he has any questions.  I'll be going for scans soon and will see what the doctor says.  I'm hoping to get off these drugs because I'm afraid the melanoma will mutate soon.   However, I'm confident that I wouldn't be writing to you now if I hadn't taken the combo.  I know every patient reacts differently, but maybe Jake will have the same success.

                                                        God bless,

                                                        Tricia

                                                        P.S.  I was diagnosed at 3B in July 2009. Previous treatments were – 1 year of Interferon, radiation, Leukine alone, Leukine with IPI, and Keytruda.

                                                         

                                                        Momofjake
                                                        Participant

                                                          Thanks all. I did a few screen shots of your comments and texted them to Jake:) He is scheduled for an infusion of ipi 10/3. We will see what he decides. Then he goes to Iceland w his dad for a week:) Fun! Yay! Always good to hear success stories, treatments used that worked,and people doing fun things, right?? 

                                                          Any news on Josh? 

                                                          With gratitude,

                                                          kerri–momofjake

                                                          Momofjake
                                                          Participant

                                                            Thanks all. I did a few screen shots of your comments and texted them to Jake:) He is scheduled for an infusion of ipi 10/3. We will see what he decides. Then he goes to Iceland w his dad for a week:) Fun! Yay! Always good to hear success stories, treatments used that worked,and people doing fun things, right?? 

                                                            Any news on Josh? 

                                                            With gratitude,

                                                            kerri–momofjake

                                                            Momofjake
                                                            Participant

                                                              Thanks all. I did a few screen shots of your comments and texted them to Jake:) He is scheduled for an infusion of ipi 10/3. We will see what he decides. Then he goes to Iceland w his dad for a week:) Fun! Yay! Always good to hear success stories, treatments used that worked,and people doing fun things, right?? 

                                                              Any news on Josh? 

                                                              With gratitude,

                                                              kerri–momofjake

                                                          Viewing 23 reply threads
                                                          • You must be logged in to reply to this topic.
                                                          About the MRF Patient Forum

                                                          The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                          The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.