› Forums › General Melanoma Community › Decision time again for Jake
- This topic has 54 replies, 14 voices, and was last updated 8 years ago by
Lil0909.
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- March 25, 2016 at 4:39 am
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
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- March 25, 2016 at 8:24 am
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.
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- March 25, 2016 at 8:24 am
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.
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- March 25, 2016 at 1:43 pm
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.
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- March 25, 2016 at 1:43 pm
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.
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- March 25, 2016 at 1:43 pm
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.
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- March 25, 2016 at 8:24 am
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.
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- March 25, 2016 at 11:55 am
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
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- March 25, 2016 at 11:55 am
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
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- March 25, 2016 at 11:55 am
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
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- March 25, 2016 at 12:54 pm
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
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- March 25, 2016 at 12:54 pm
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
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- March 25, 2016 at 12:54 pm
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
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- March 25, 2016 at 3:12 pm
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
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- March 25, 2016 at 3:12 pm
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
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- March 26, 2016 at 6:31 pm
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
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- March 26, 2016 at 6:31 pm
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
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- March 26, 2016 at 6:31 pm
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
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- March 25, 2016 at 3:12 pm
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
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- March 25, 2016 at 3:36 pm
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.
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- March 25, 2016 at 3:36 pm
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.
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- March 25, 2016 at 3:36 pm
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.
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- March 25, 2016 at 3:49 pm
I would contact this doctor in Nevada who just published this article today see:
Best wishes,
Gene
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- March 25, 2016 at 3:49 pm
I would contact this doctor in Nevada who just published this article today see:
Best wishes,
Gene
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- March 25, 2016 at 3:49 pm
I would contact this doctor in Nevada who just published this article today see:
Best wishes,
Gene
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- March 25, 2016 at 3:59 pm
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
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- March 25, 2016 at 3:59 pm
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
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- March 25, 2016 at 3:59 pm
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
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- March 26, 2016 at 2:40 am
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
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- March 26, 2016 at 2:40 am
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
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- March 26, 2016 at 2:40 am
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
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- March 26, 2016 at 9:33 pm
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 !
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- March 26, 2016 at 9:33 pm
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 !
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- March 26, 2016 at 9:33 pm
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 !
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- March 27, 2016 at 1:01 pm
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
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- March 27, 2016 at 1:01 pm
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
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- March 27, 2016 at 1:01 pm
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
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