› Forums › General Melanoma Community › any good responder to Ipi or pembro after fail Braf/Mek?
- This topic has 12 replies, 2 voices, and was last updated 11 years, 7 months ago by
jualonso.
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- July 6, 2014 at 4:15 pm
For me I dunno yet. I just got my 3rd dose of the EAP Pembro. Doc says he won't know if it is working until after the 6th dose. Unless of course by some miracle the visable tumors shrink which so far they haven't.
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- July 6, 2014 at 7:27 pm
Well, i hope you will be a good responder
How long were you with the Combo?
Did you speak anytime with your doc to start pd1 before get resistance to combo?
All what i hear, also people from Sloan Kettering from new york that they just put the patients 3,4 months on this combo and change to inmunotherapy before the resistance is done.
I think they do because also tumor could be less inmunogenic after resistance, but im not sure at all.
Thanks and good luck
By the way, how are side effects of pembro?
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- July 7, 2014 at 2:58 pm
I was only on the combo about 8 weeks. I had already failed zel in 8 weeks. I think mine was already braf resistant before taking these meds. Something about gene mutations and it goes to the erb gene mutation but that is all doc guess work. They never did any gene tests other than the braf. With the combo I think the mekenist helped block all growth except my largest tumor which grew a lot and spread to a lymph node. I doubt if the tafinlar did anything good.
I had to bring the merck eap pd1 to my docs attention. Otherwise my doc was saying the combo was all he had. So yes the folks on this site really help save me. Way more informative than the docs. Otherwise I would have never known about it. But once it opened in Mayo my doc quickly got me in.
Side effects of pembro have been pretty much nothing. I dunno if that is good or bad. I had a week washout from the combo. Then 3 days after my first dose for about 10 days I had grade 1 fevers (100.7 was the highest), massive pressure with the outer edge layer of my skull (where I have tumors) and that was pretty much it I think. So almost 7 weeks with only having to deal with the disease side effects (ie: skull pressure that comes and goes with that visible tumor, shoulder pain from that huge tumor and some spine pain and twinges that comes and goes from those tumors).
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- July 7, 2014 at 2:58 pm
I was only on the combo about 8 weeks. I had already failed zel in 8 weeks. I think mine was already braf resistant before taking these meds. Something about gene mutations and it goes to the erb gene mutation but that is all doc guess work. They never did any gene tests other than the braf. With the combo I think the mekenist helped block all growth except my largest tumor which grew a lot and spread to a lymph node. I doubt if the tafinlar did anything good.
I had to bring the merck eap pd1 to my docs attention. Otherwise my doc was saying the combo was all he had. So yes the folks on this site really help save me. Way more informative than the docs. Otherwise I would have never known about it. But once it opened in Mayo my doc quickly got me in.
Side effects of pembro have been pretty much nothing. I dunno if that is good or bad. I had a week washout from the combo. Then 3 days after my first dose for about 10 days I had grade 1 fevers (100.7 was the highest), massive pressure with the outer edge layer of my skull (where I have tumors) and that was pretty much it I think. So almost 7 weeks with only having to deal with the disease side effects (ie: skull pressure that comes and goes with that visible tumor, shoulder pain from that huge tumor and some spine pain and twinges that comes and goes from those tumors).
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- July 8, 2014 at 7:39 pm
Well arthur,
I think is better not to have many side effects, i heard from other who had very few as you, i they were complete responder. I hope you too amd me later on ๐
I really hope results from people who fail Braf/Mek came out as soon as possible because im getting mad, i dont kmow what to do, stop and going on pembro os keeping the combo with very good results for me so far. Im afraid it can affect the response of inmunotheraphy what is the hope of a "cure".
But no one can say nothing for now, is unbelieveble how i get to this disease wich even my doctor dont know almost anything.
But ok, we will wait a bit.. ……..
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- July 8, 2014 at 7:39 pm
Well arthur,
I think is better not to have many side effects, i heard from other who had very few as you, i they were complete responder. I hope you too amd me later on ๐
I really hope results from people who fail Braf/Mek came out as soon as possible because im getting mad, i dont kmow what to do, stop and going on pembro os keeping the combo with very good results for me so far. Im afraid it can affect the response of inmunotheraphy what is the hope of a "cure".
But no one can say nothing for now, is unbelieveble how i get to this disease wich even my doctor dont know almost anything.
But ok, we will wait a bit.. ……..
-
- July 8, 2014 at 7:39 pm
Well arthur,
I think is better not to have many side effects, i heard from other who had very few as you, i they were complete responder. I hope you too amd me later on ๐
I really hope results from people who fail Braf/Mek came out as soon as possible because im getting mad, i dont kmow what to do, stop and going on pembro os keeping the combo with very good results for me so far. Im afraid it can affect the response of inmunotheraphy what is the hope of a "cure".
But no one can say nothing for now, is unbelieveble how i get to this disease wich even my doctor dont know almost anything.
But ok, we will wait a bit.. ……..
-
- July 7, 2014 at 2:58 pm
I was only on the combo about 8 weeks. I had already failed zel in 8 weeks. I think mine was already braf resistant before taking these meds. Something about gene mutations and it goes to the erb gene mutation but that is all doc guess work. They never did any gene tests other than the braf. With the combo I think the mekenist helped block all growth except my largest tumor which grew a lot and spread to a lymph node. I doubt if the tafinlar did anything good.
I had to bring the merck eap pd1 to my docs attention. Otherwise my doc was saying the combo was all he had. So yes the folks on this site really help save me. Way more informative than the docs. Otherwise I would have never known about it. But once it opened in Mayo my doc quickly got me in.
Side effects of pembro have been pretty much nothing. I dunno if that is good or bad. I had a week washout from the combo. Then 3 days after my first dose for about 10 days I had grade 1 fevers (100.7 was the highest), massive pressure with the outer edge layer of my skull (where I have tumors) and that was pretty much it I think. So almost 7 weeks with only having to deal with the disease side effects (ie: skull pressure that comes and goes with that visible tumor, shoulder pain from that huge tumor and some spine pain and twinges that comes and goes from those tumors).
-
- July 6, 2014 at 7:27 pm
Well, i hope you will be a good responder
How long were you with the Combo?
Did you speak anytime with your doc to start pd1 before get resistance to combo?
All what i hear, also people from Sloan Kettering from new york that they just put the patients 3,4 months on this combo and change to inmunotherapy before the resistance is done.
I think they do because also tumor could be less inmunogenic after resistance, but im not sure at all.
Thanks and good luck
By the way, how are side effects of pembro?
-
- July 6, 2014 at 7:27 pm
Well, i hope you will be a good responder
How long were you with the Combo?
Did you speak anytime with your doc to start pd1 before get resistance to combo?
All what i hear, also people from Sloan Kettering from new york that they just put the patients 3,4 months on this combo and change to inmunotherapy before the resistance is done.
I think they do because also tumor could be less inmunogenic after resistance, but im not sure at all.
Thanks and good luck
By the way, how are side effects of pembro?
-
- July 6, 2014 at 4:15 pm
For me I dunno yet. I just got my 3rd dose of the EAP Pembro. Doc says he won't know if it is working until after the 6th dose. Unless of course by some miracle the visable tumors shrink which so far they haven't.
-
- July 6, 2014 at 4:15 pm
For me I dunno yet. I just got my 3rd dose of the EAP Pembro. Doc says he won't know if it is working until after the 6th dose. Unless of course by some miracle the visable tumors shrink which so far they haven't.
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