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Decision time again for Jake

Forums General Melanoma Community Decision time again for Jake

  • Post
    Momofjake
    Participant

      Hi my friends!

      i just wrote a post that somehow didn't show up. Dang. 

      K. Jakes scans showed more growth. Now in liver, lungs, spine, bones, muscles, most nodes, aortic arch node pressing on his aorta, stomach, kidney, rectum, neck….ya. Everywhere. 

      They have cancelled his keytruda for Monday and have given 2 real options. 

      1. Mek/Taflinar combo

      2. Study with ipi/Taflinar combo

      do these sound like reasonable choices? Which would you choose? I will be doing my best homework to help educate Jake. He is debating if he even wants any treatments and is 18 making the biggest decisions there are. It's so hard! But he does get to choose and I told him I will support whatever he decides! No one can ever judge how another navigates this nightmare. Jake feels great and has all the faith in the world! 

      I really love you here and I know the heartache. Hope you are all being blessed with a normal day. Aren't they great?:) 

      Warm regards,

      kerri–momofjake

    Viewing 32 reply threads
    • Replies
        Mat
        Participant

          I would go for Tafinlar-Mekinist to knock back the tumor burden and then look at ipi-nivo or possibly a newer trial.  I've not heard any success stories about ipi-Tafinlar which they've been testing in trials for 2 years.  To the extent you only get so many chances at ipi, I'd rather have it with nivo.  Good luck.

          Mat
          Participant

            I would go for Tafinlar-Mekinist to knock back the tumor burden and then look at ipi-nivo or possibly a newer trial.  I've not heard any success stories about ipi-Tafinlar which they've been testing in trials for 2 years.  To the extent you only get so many chances at ipi, I'd rather have it with nivo.  Good luck.

              BrianP
              Participant

                +1 for what Mat said.  The Taf-Mek combo can have some great immediate results.  Hopefully you can encourage Jake to at least give it a try.  I put Jake on our church's prayer list last week.  Good luck.

                Brian

                BrianP
                Participant

                  +1 for what Mat said.  The Taf-Mek combo can have some great immediate results.  Hopefully you can encourage Jake to at least give it a try.  I put Jake on our church's prayer list last week.  Good luck.

                  Brian

                  BrianP
                  Participant

                    +1 for what Mat said.  The Taf-Mek combo can have some great immediate results.  Hopefully you can encourage Jake to at least give it a try.  I put Jake on our church's prayer list last week.  Good luck.

                    Brian

                    Momofjake
                    Participant

                      Just pills too right? I think this might appeal to him. Not going for all the infusions with all the chemo patients in our hospital. Mostly quite old people very sick. He walks in like a Tri-athlete looking healthy and has been the youngest at our hospital. He was 17 when he got sick and could have gone to our children's hospital. He didn't want to see the sick kids. So he was the baby at the cancer center. He hates going and says nothing there has worked. But he does have big scars, had horrible chemo and has a bald spot on his head he hates from radiation. The pills….this will be my recommendation to him. Now we just pray and make peace w his choice. Thank you Mat. 

                      Momofjake
                      Participant

                        Just pills too right? I think this might appeal to him. Not going for all the infusions with all the chemo patients in our hospital. Mostly quite old people very sick. He walks in like a Tri-athlete looking healthy and has been the youngest at our hospital. He was 17 when he got sick and could have gone to our children's hospital. He didn't want to see the sick kids. So he was the baby at the cancer center. He hates going and says nothing there has worked. But he does have big scars, had horrible chemo and has a bald spot on his head he hates from radiation. The pills….this will be my recommendation to him. Now we just pray and make peace w his choice. Thank you Mat. 

                        Momofjake
                        Participant

                          Just pills too right? I think this might appeal to him. Not going for all the infusions with all the chemo patients in our hospital. Mostly quite old people very sick. He walks in like a Tri-athlete looking healthy and has been the youngest at our hospital. He was 17 when he got sick and could have gone to our children's hospital. He didn't want to see the sick kids. So he was the baby at the cancer center. He hates going and says nothing there has worked. But he does have big scars, had horrible chemo and has a bald spot on his head he hates from radiation. The pills….this will be my recommendation to him. Now we just pray and make peace w his choice. Thank you Mat. 

                          Momofjake
                          Participant

                            you took this right???

                            Momofjake
                            Participant

                              you took this right???

                              Mat
                              Participant

                                Yes Kerri.  For 18 months.  You can view my historical posts on the site, starting from August 2013.  And yes, they are pills.

                                Mat
                                Participant

                                  Yes Kerri.  For 18 months.  You can view my historical posts on the site, starting from August 2013.  And yes, they are pills.

                                  Mat
                                  Participant

                                    Yes Kerri.  For 18 months.  You can view my historical posts on the site, starting from August 2013.  And yes, they are pills.

                                    Momofjake
                                    Participant

                                      you took this right???

                                    Mat
                                    Participant

                                      I would go for Tafinlar-Mekinist to knock back the tumor burden and then look at ipi-nivo or possibly a newer trial.  I've not heard any success stories about ipi-Tafinlar which they've been testing in trials for 2 years.  To the extent you only get so many chances at ipi, I'd rather have it with nivo.  Good luck.

                                      mjanssentx
                                      Participant

                                        Kerri – reading your post is so tough.  Can't even begin to imagine the journey you and Jake are on.  

                                        I have no real experience other than to reflect on what I have read on here over the past 18 months.  At this point, it sounds like you need to go with the boldest option possible.  Take every possible option, fast and furious.

                                        It breaks my heart even typing this.  So many good things happening in Melonoma but it is still a terrible disease.

                                        We are all thinking/praying for you and Jake….keep fighting.

                                        Michel

                                        mjanssentx
                                        Participant

                                          Kerri – reading your post is so tough.  Can't even begin to imagine the journey you and Jake are on.  

                                          I have no real experience other than to reflect on what I have read on here over the past 18 months.  At this point, it sounds like you need to go with the boldest option possible.  Take every possible option, fast and furious.

                                          It breaks my heart even typing this.  So many good things happening in Melonoma but it is still a terrible disease.

                                          We are all thinking/praying for you and Jake….keep fighting.

                                          Michel

                                          mjanssentx
                                          Participant

                                            Kerri – reading your post is so tough.  Can't even begin to imagine the journey you and Jake are on.  

                                            I have no real experience other than to reflect on what I have read on here over the past 18 months.  At this point, it sounds like you need to go with the boldest option possible.  Take every possible option, fast and furious.

                                            It breaks my heart even typing this.  So many good things happening in Melonoma but it is still a terrible disease.

                                            We are all thinking/praying for you and Jake….keep fighting.

                                            Michel

                                            JuTMSY4
                                            Participant

                                              Kerri,

                                              Every time I read about Jake, it makes my heart hurt.  I'm glad he's feeling well and I'm really impressed (that's not the right word) by your support.  God bless both of you.

                                              I don't have much to add – other folks have way more experience with these drugs, but I wanted to wish you luck and to say a prayer.  Hang in there folks.

                                              -Justin

                                              JuTMSY4
                                              Participant

                                                Kerri,

                                                Every time I read about Jake, it makes my heart hurt.  I'm glad he's feeling well and I'm really impressed (that's not the right word) by your support.  God bless both of you.

                                                I don't have much to add – other folks have way more experience with these drugs, but I wanted to wish you luck and to say a prayer.  Hang in there folks.

                                                -Justin

                                                JuTMSY4
                                                Participant

                                                  Kerri,

                                                  Every time I read about Jake, it makes my heart hurt.  I'm glad he's feeling well and I'm really impressed (that's not the right word) by your support.  God bless both of you.

                                                  I don't have much to add – other folks have way more experience with these drugs, but I wanted to wish you luck and to say a prayer.  Hang in there folks.

                                                  -Justin

                                                  Bubbles
                                                  Participant

                                                    Hey Kerri,

                                                    Sorry for those results.  I vote with Mat and Brian.  The Taf/mek combo can demonstrate rapid and excellent results….perhaps allowing for continued response and/or stability….some folks are able to maintain on the combo much longer than we used to think possible with alternate dosing schedules and the combo itself.  On top of that….it can rapidly and significantly decrease disease burden allowing the patient to then pursue other immunotherapy options if they are needed. 

                                                    I messaged you when I saw your comment on another post…..guessing you never got it…..sorry.  It appears that avenue is not functioning just now.

                                                    Hang in there.  Yours, Celeste

                                                    Bubbles
                                                    Participant

                                                      Hey Kerri,

                                                      Sorry for those results.  I vote with Mat and Brian.  The Taf/mek combo can demonstrate rapid and excellent results….perhaps allowing for continued response and/or stability….some folks are able to maintain on the combo much longer than we used to think possible with alternate dosing schedules and the combo itself.  On top of that….it can rapidly and significantly decrease disease burden allowing the patient to then pursue other immunotherapy options if they are needed. 

                                                      I messaged you when I saw your comment on another post…..guessing you never got it…..sorry.  It appears that avenue is not functioning just now.

                                                      Hang in there.  Yours, Celeste

                                                        Momofjake
                                                        Participant

                                                          Okay. Was hoping to get a consensus from a few I know here. Mek/Taf will be my choice. Now to see what Jake chooses….I don't recall making many great choices at 18, but he has become wiser than his years and ultimately this is his. 

                                                          Thanks,

                                                          Kerri

                                                          Momofjake
                                                          Participant

                                                            Okay. Was hoping to get a consensus from a few I know here. Mek/Taf will be my choice. Now to see what Jake chooses….I don't recall making many great choices at 18, but he has become wiser than his years and ultimately this is his. 

                                                            Thanks,

                                                            Kerri

                                                            Momofjake
                                                            Participant

                                                              Okay. Was hoping to get a consensus from a few I know here. Mek/Taf will be my choice. Now to see what Jake chooses….I don't recall making many great choices at 18, but he has become wiser than his years and ultimately this is his. 

                                                              Thanks,

                                                              Kerri

                                                              ed williams
                                                              Participant

                                                                Kerri, something that might be helpfull is going to the blog that Celeste created. If you go to Sept 24/2015 you will find a summary of two well known experts (Weber and Agarwala) in Melanoma talking on Omedlive about side effects of immunotherapies and targeted therapies(braf and mek inhibitors). It is current and very informative, you could also click on the link and watch it yourself. You have to join omedlive to be able to see the video, don't worry they will not  send any junk mail afterwards. Wishing you and Jake the best!!! Ed

                                                                ed williams
                                                                Participant

                                                                  Kerri, something that might be helpfull is going to the blog that Celeste created. If you go to Sept 24/2015 you will find a summary of two well known experts (Weber and Agarwala) in Melanoma talking on Omedlive about side effects of immunotherapies and targeted therapies(braf and mek inhibitors). It is current and very informative, you could also click on the link and watch it yourself. You have to join omedlive to be able to see the video, don't worry they will not  send any junk mail afterwards. Wishing you and Jake the best!!! Ed

                                                                  ed williams
                                                                  Participant

                                                                    Kerri, something that might be helpfull is going to the blog that Celeste created. If you go to Sept 24/2015 you will find a summary of two well known experts (Weber and Agarwala) in Melanoma talking on Omedlive about side effects of immunotherapies and targeted therapies(braf and mek inhibitors). It is current and very informative, you could also click on the link and watch it yourself. You have to join omedlive to be able to see the video, don't worry they will not  send any junk mail afterwards. Wishing you and Jake the best!!! Ed

                                                                    Momofjake
                                                                    Participant

                                                                      K. Thanks Ed!

                                                                      Momofjake
                                                                      Participant

                                                                        K. Thanks Ed!

                                                                        Momofjake
                                                                        Participant

                                                                          K. Thanks Ed!

                                                                        Bubbles
                                                                        Participant

                                                                          Hey Kerri,

                                                                          Sorry for those results.  I vote with Mat and Brian.  The Taf/mek combo can demonstrate rapid and excellent results….perhaps allowing for continued response and/or stability….some folks are able to maintain on the combo much longer than we used to think possible with alternate dosing schedules and the combo itself.  On top of that….it can rapidly and significantly decrease disease burden allowing the patient to then pursue other immunotherapy options if they are needed. 

                                                                          I messaged you when I saw your comment on another post…..guessing you never got it…..sorry.  It appears that avenue is not functioning just now.

                                                                          Hang in there.  Yours, Celeste

                                                                          Andrew1725
                                                                          Participant

                                                                            Agreed on the Tafinlar/Mekinist combo right now. Probably the best available option for quickly and effectively decreasing the tumor burden. To be followed up with Ipi-Nivo, if necessary later.

                                                                            Andrew1725
                                                                            Participant

                                                                              Agreed on the Tafinlar/Mekinist combo right now. Probably the best available option for quickly and effectively decreasing the tumor burden. To be followed up with Ipi-Nivo, if necessary later.

                                                                              Andrew1725
                                                                              Participant

                                                                                Agreed on the Tafinlar/Mekinist combo right now. Probably the best available option for quickly and effectively decreasing the tumor burden. To be followed up with Ipi-Nivo, if necessary later.

                                                                                Gene_S
                                                                                Participant

                                                                                  I would contact this doctor in Nevada who just published this article today see:

                                                                                  Best wishes,

                                                                                  Gene

                                                                                  Gene_S
                                                                                  Participant

                                                                                    I would contact this doctor in Nevada who just published this article today see:

                                                                                    Best wishes,

                                                                                    Gene

                                                                                    Gene_S
                                                                                    Participant

                                                                                      I would contact this doctor in Nevada who just published this article today see:

                                                                                      Best wishes,

                                                                                      Gene

                                                                                      adriana cooper
                                                                                      Participant

                                                                                        Sorry to hear that Keytruda doesn't seem to be helping. Zelboraf then the combo reduced Adriana's tumors to almost zero (20+ in lungs and several in arms and torso). Although it didn't prevent a tumor from appearing in the brain that was treated with Gamma Knife and then 4 Keytruda doses she is now on break from all meds (and recovering from the various side effects) with only a couple remaining visible spots at 1mm. The Dr. used the word "remission" which was an amazing thing to hear. I urge Jake to give the combo or Zelboraf a try if he is still feeling well (although they too have side effects) and find his magic bullet. Best wishes. Rob and Adriana

                                                                                        adriana cooper
                                                                                        Participant

                                                                                          Sorry to hear that Keytruda doesn't seem to be helping. Zelboraf then the combo reduced Adriana's tumors to almost zero (20+ in lungs and several in arms and torso). Although it didn't prevent a tumor from appearing in the brain that was treated with Gamma Knife and then 4 Keytruda doses she is now on break from all meds (and recovering from the various side effects) with only a couple remaining visible spots at 1mm. The Dr. used the word "remission" which was an amazing thing to hear. I urge Jake to give the combo or Zelboraf a try if he is still feeling well (although they too have side effects) and find his magic bullet. Best wishes. Rob and Adriana

                                                                                          adriana cooper
                                                                                          Participant

                                                                                            Sorry to hear that Keytruda doesn't seem to be helping. Zelboraf then the combo reduced Adriana's tumors to almost zero (20+ in lungs and several in arms and torso). Although it didn't prevent a tumor from appearing in the brain that was treated with Gamma Knife and then 4 Keytruda doses she is now on break from all meds (and recovering from the various side effects) with only a couple remaining visible spots at 1mm. The Dr. used the word "remission" which was an amazing thing to hear. I urge Jake to give the combo or Zelboraf a try if he is still feeling well (although they too have side effects) and find his magic bullet. Best wishes. Rob and Adriana

                                                                                            Rita and Charles
                                                                                            Participant

                                                                                              My husband saw great results right after the first scans, side effects are managable.  Pills in the morning, pills at night……and shrink the tumor burden. Hopefully it won't make him sick, he can handle the effects and allow the tumors to shrink.  I am praying for you.

                                                                                              Rita

                                                                                              Rita and Charles
                                                                                              Participant

                                                                                                My husband saw great results right after the first scans, side effects are managable.  Pills in the morning, pills at night……and shrink the tumor burden. Hopefully it won't make him sick, he can handle the effects and allow the tumors to shrink.  I am praying for you.

                                                                                                Rita

                                                                                                Rita and Charles
                                                                                                Participant

                                                                                                  My husband saw great results right after the first scans, side effects are managable.  Pills in the morning, pills at night……and shrink the tumor burden. Hopefully it won't make him sick, he can handle the effects and allow the tumors to shrink.  I am praying for you.

                                                                                                  Rita

                                                                                                  Issy
                                                                                                  Participant

                                                                                                    I too would strongly suggest taflinar mekinist. These are pills so Jake would not have to go to the hospital for treatment. He would just have to take as prescribed. No eating 2 hours before and one hour after. When they work, they work quickly and would reduce Jake's tumor burden fast ( pray to G-D ).

                                                                                                    PLEASE try to get him to take the pills.  They were miracles for my brother twice !  He was on the drugt trial  for them and was on them for 16 months, reduced his tumor load by 85%, then on ipi and then nivo separately,  and then back on the taflinar – mekinist again a year later for another 16 months. Now on ipi/nivo combo. 

                                                                                                    PLEASE give them a try Jake !  We are praying for you !

                                                                                                     

                                                                                                    Issy
                                                                                                    Participant

                                                                                                      I too would strongly suggest taflinar mekinist. These are pills so Jake would not have to go to the hospital for treatment. He would just have to take as prescribed. No eating 2 hours before and one hour after. When they work, they work quickly and would reduce Jake's tumor burden fast ( pray to G-D ).

                                                                                                      PLEASE try to get him to take the pills.  They were miracles for my brother twice !  He was on the drugt trial  for them and was on them for 16 months, reduced his tumor load by 85%, then on ipi and then nivo separately,  and then back on the taflinar – mekinist again a year later for another 16 months. Now on ipi/nivo combo. 

                                                                                                      PLEASE give them a try Jake !  We are praying for you !

                                                                                                       

                                                                                                      Issy
                                                                                                      Participant

                                                                                                        I too would strongly suggest taflinar mekinist. These are pills so Jake would not have to go to the hospital for treatment. He would just have to take as prescribed. No eating 2 hours before and one hour after. When they work, they work quickly and would reduce Jake's tumor burden fast ( pray to G-D ).

                                                                                                        PLEASE try to get him to take the pills.  They were miracles for my brother twice !  He was on the drugt trial  for them and was on them for 16 months, reduced his tumor load by 85%, then on ipi and then nivo separately,  and then back on the taflinar – mekinist again a year later for another 16 months. Now on ipi/nivo combo. 

                                                                                                        PLEASE give them a try Jake !  We are praying for you !

                                                                                                         

                                                                                                        jaco
                                                                                                        Participant

                                                                                                          I would definitely go the taf/me combo, it worked for me. Started in Sept 2015, lump under my arm was gone within weeks. 6 months later both the tumors under my arm and groin gone, no active sign of cancer cells. I'm stage 4 and in remission.  Jake would like this pills at home, side affects not too bad, really worth it. Keeping you in my prayers. Jamie

                                                                                                          jaco
                                                                                                          Participant

                                                                                                            I would definitely go the taf/me combo, it worked for me. Started in Sept 2015, lump under my arm was gone within weeks. 6 months later both the tumors under my arm and groin gone, no active sign of cancer cells. I'm stage 4 and in remission.  Jake would like this pills at home, side affects not too bad, really worth it. Keeping you in my prayers. Jamie

                                                                                                            jaco
                                                                                                            Participant

                                                                                                              I would definitely go the taf/me combo, it worked for me. Started in Sept 2015, lump under my arm was gone within weeks. 6 months later both the tumors under my arm and groin gone, no active sign of cancer cells. I'm stage 4 and in remission.  Jake would like this pills at home, side affects not too bad, really worth it. Keeping you in my prayers. Jamie

                                                                                                              Lil0909
                                                                                                              Participant

                                                                                                                I don't have any advice – just wanted to say good luck and sending positive enrgy your way!

                                                                                                                Lil0909
                                                                                                                Participant

                                                                                                                  I don't have any advice – just wanted to say good luck and sending positive enrgy your way!

                                                                                                                  Lil0909
                                                                                                                  Participant

                                                                                                                    I don't have any advice – just wanted to say good luck and sending positive enrgy your way!

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