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- This topic has 30 replies, 5 voices, and was last updated 7 years, 8 months ago by
Aaron.
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- August 26, 2016 at 7:58 pm
I am just posting on here to give an update on what's going on in my world for anyone who may be wishing to read it. As a reminder, I am on an ipi/nivo trial with a braf inhibitor arm to follow. Shortly after my third infusion headaches began with my pituitary being compromised and developing vitiligo all over my arms. 4th treatment of infusions were cancelled with ipi probably being permanently off the list. i understand this and am ok with it as I know I am stimulated. Last night I visited with Dr. again and am up for my first scan next Thursday. i have not been weaned off prednisone in anyway shape or form and do not believe I will begin being weaned for a few more weeks. I was informed that I may no longer be able to participate in the trial since I no longer fit in their parameters and if I do continue on the trial, they may want me to go ahead and move onto the BRAF arm. It is questionable as to whether or not I will be able to take Nivo anymore as well, since I did have to take benydryl during my last infusion (though I can't help but believe that we will at least try it again). There are still a lot of looming questions out there, but i feel it is in my best interest to pursue the nivo option rather than continue of trial with BRAF at this point in the game. I feel in my gut that I will see an improvement in my first scan, just don't like the idea of being denied the use of the trial altogether or giving up on immuno prematurely. I am still thankful though that even if I am off trial that the nivo component is still readily available to me if I have the consent of the drs.
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- August 27, 2016 at 1:22 pm
Hi Aaron,
Thanks for keeping us updated. I too was very responsive to the ipi/nivo combo (vertilogo & more), which is a really good sign I hear. Can't imagine how frustrating it must be for you to still be on steroids – I've been on & off 6 times over the past 14 months – always hate being on them. When are your next scans due? WIll they look at those before deciding whether nivo (maintenance) is all you need, rather than continuing on the trial?
I imagine you poured a lot of hope into the trial when you were selected so the psychological shift to nivo maitenance may feel like a setback, but in the end might be the best scenario for you!?
Wishing you all positive responses/moves ahead –
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- August 27, 2016 at 1:22 pm
Hi Aaron,
Thanks for keeping us updated. I too was very responsive to the ipi/nivo combo (vertilogo & more), which is a really good sign I hear. Can't imagine how frustrating it must be for you to still be on steroids – I've been on & off 6 times over the past 14 months – always hate being on them. When are your next scans due? WIll they look at those before deciding whether nivo (maintenance) is all you need, rather than continuing on the trial?
I imagine you poured a lot of hope into the trial when you were selected so the psychological shift to nivo maitenance may feel like a setback, but in the end might be the best scenario for you!?
Wishing you all positive responses/moves ahead –
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- August 27, 2016 at 1:22 pm
Hi Aaron,
Thanks for keeping us updated. I too was very responsive to the ipi/nivo combo (vertilogo & more), which is a really good sign I hear. Can't imagine how frustrating it must be for you to still be on steroids – I've been on & off 6 times over the past 14 months – always hate being on them. When are your next scans due? WIll they look at those before deciding whether nivo (maintenance) is all you need, rather than continuing on the trial?
I imagine you poured a lot of hope into the trial when you were selected so the psychological shift to nivo maitenance may feel like a setback, but in the end might be the best scenario for you!?
Wishing you all positive responses/moves ahead –
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- August 28, 2016 at 3:50 pm
Hi Aaron – It's Karen. I've been thinking about you since we've basically been on the same course and had the same side affects the entire time. I was on predinosone and being weaned off and down to 10mg when the headaches came back about 2 weeks ago. Went in for an MRI and the pituitary was as large as it was as it was the week after the 3rd dose. Back up to the hi dose steroids (70mg) and still having headaches last week. Now up to 100mg and I stil get a headache around dinner time. I feel horrible on these steroids and eating non stop. I feel like I'm never going to get weaned off these things and move on to the nivo maintenance or BRAF treatment. I meet with the endocrinologist on Wednesday. I'm kind of surprised they're doing your scans so early but remember that you've only been off your ipi/nivo combo since July right? It hasn't been that long and you still may see better results weeks later. My doc is doing my scans on 9/13 (8 weeks after my last ipi/nivo dose) and she still thinks that is a little early and a scan 10-12 weeks after may show improvement. I'm just trying to stay positive and not freak out until my scans. Please post as soon as you get your results. I'm hoping you see great results and then I'll too follow with the same result in September 🙂
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- August 28, 2016 at 3:50 pm
Hi Aaron – It's Karen. I've been thinking about you since we've basically been on the same course and had the same side affects the entire time. I was on predinosone and being weaned off and down to 10mg when the headaches came back about 2 weeks ago. Went in for an MRI and the pituitary was as large as it was as it was the week after the 3rd dose. Back up to the hi dose steroids (70mg) and still having headaches last week. Now up to 100mg and I stil get a headache around dinner time. I feel horrible on these steroids and eating non stop. I feel like I'm never going to get weaned off these things and move on to the nivo maintenance or BRAF treatment. I meet with the endocrinologist on Wednesday. I'm kind of surprised they're doing your scans so early but remember that you've only been off your ipi/nivo combo since July right? It hasn't been that long and you still may see better results weeks later. My doc is doing my scans on 9/13 (8 weeks after my last ipi/nivo dose) and she still thinks that is a little early and a scan 10-12 weeks after may show improvement. I'm just trying to stay positive and not freak out until my scans. Please post as soon as you get your results. I'm hoping you see great results and then I'll too follow with the same result in September 🙂
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- August 28, 2016 at 3:50 pm
Hi Aaron – It's Karen. I've been thinking about you since we've basically been on the same course and had the same side affects the entire time. I was on predinosone and being weaned off and down to 10mg when the headaches came back about 2 weeks ago. Went in for an MRI and the pituitary was as large as it was as it was the week after the 3rd dose. Back up to the hi dose steroids (70mg) and still having headaches last week. Now up to 100mg and I stil get a headache around dinner time. I feel horrible on these steroids and eating non stop. I feel like I'm never going to get weaned off these things and move on to the nivo maintenance or BRAF treatment. I meet with the endocrinologist on Wednesday. I'm kind of surprised they're doing your scans so early but remember that you've only been off your ipi/nivo combo since July right? It hasn't been that long and you still may see better results weeks later. My doc is doing my scans on 9/13 (8 weeks after my last ipi/nivo dose) and she still thinks that is a little early and a scan 10-12 weeks after may show improvement. I'm just trying to stay positive and not freak out until my scans. Please post as soon as you get your results. I'm hoping you see great results and then I'll too follow with the same result in September 🙂
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- August 28, 2016 at 3:51 pm
What is the BRAF trial you're referring to after the ipi/nivo???
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- August 28, 2016 at 11:16 pm
My next scan is this coming Thursday. I am a little upset but still overall confident that I am on my path to ned with having both vitiligo and pituitary issues. I have no reason to think otherwise and it keeps me going.
The trial I am on put half of us on ipi/nivo and the other half on braf inhibitors. At the end of the first arm or until progression we switch arms where those who started on ipi/nivo switch to braf inhibitors and those that started in braf inhibitors switch to ipi/nivo. I was put on ipi/nivo first which is the arm I was hoping for so the braf would be in my back pocket if needed done the line but now I may drop out of the trial if they try to force me to go to the braf arm because I think I need to continue the nivo part of my treatment until proven otherwise.
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- August 28, 2016 at 11:16 pm
My next scan is this coming Thursday. I am a little upset but still overall confident that I am on my path to ned with having both vitiligo and pituitary issues. I have no reason to think otherwise and it keeps me going.
The trial I am on put half of us on ipi/nivo and the other half on braf inhibitors. At the end of the first arm or until progression we switch arms where those who started on ipi/nivo switch to braf inhibitors and those that started in braf inhibitors switch to ipi/nivo. I was put on ipi/nivo first which is the arm I was hoping for so the braf would be in my back pocket if needed done the line but now I may drop out of the trial if they try to force me to go to the braf arm because I think I need to continue the nivo part of my treatment until proven otherwise.
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- August 29, 2016 at 1:53 am
Gotcha – I didn't know you were on a trial. My doc wanted to do the ipi/nivo followed by the nivo maintenance every two weeks but my melanoma is BRAF positive so she said we at least had anothe option to try if the ipi/nivo wasn't working. So odd that we had the same reactions after the first two treatments (rash, nothing at all after the 2nd) and that we both got hit with the pituitary and vitiligo after the 3rd. Keeping my fingers crossed for both of us that these side affects means it's also attacking the melanoma!!! I just want to get off these damn steroids. My face looks like I swallowed a balloon and after losing 30lbs last year while going through a divorce I'm so depressed to be putting it all back on but I guess once I'm healthy again I'll just have to kick some ass at the gym. Just curious – where do you live?
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- August 29, 2016 at 1:53 am
Gotcha – I didn't know you were on a trial. My doc wanted to do the ipi/nivo followed by the nivo maintenance every two weeks but my melanoma is BRAF positive so she said we at least had anothe option to try if the ipi/nivo wasn't working. So odd that we had the same reactions after the first two treatments (rash, nothing at all after the 2nd) and that we both got hit with the pituitary and vitiligo after the 3rd. Keeping my fingers crossed for both of us that these side affects means it's also attacking the melanoma!!! I just want to get off these damn steroids. My face looks like I swallowed a balloon and after losing 30lbs last year while going through a divorce I'm so depressed to be putting it all back on but I guess once I'm healthy again I'll just have to kick some ass at the gym. Just curious – where do you live?
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- August 29, 2016 at 1:53 am
Gotcha – I didn't know you were on a trial. My doc wanted to do the ipi/nivo followed by the nivo maintenance every two weeks but my melanoma is BRAF positive so she said we at least had anothe option to try if the ipi/nivo wasn't working. So odd that we had the same reactions after the first two treatments (rash, nothing at all after the 2nd) and that we both got hit with the pituitary and vitiligo after the 3rd. Keeping my fingers crossed for both of us that these side affects means it's also attacking the melanoma!!! I just want to get off these damn steroids. My face looks like I swallowed a balloon and after losing 30lbs last year while going through a divorce I'm so depressed to be putting it all back on but I guess once I'm healthy again I'll just have to kick some ass at the gym. Just curious – where do you live?
-
- August 28, 2016 at 11:16 pm
My next scan is this coming Thursday. I am a little upset but still overall confident that I am on my path to ned with having both vitiligo and pituitary issues. I have no reason to think otherwise and it keeps me going.
The trial I am on put half of us on ipi/nivo and the other half on braf inhibitors. At the end of the first arm or until progression we switch arms where those who started on ipi/nivo switch to braf inhibitors and those that started in braf inhibitors switch to ipi/nivo. I was put on ipi/nivo first which is the arm I was hoping for so the braf would be in my back pocket if needed done the line but now I may drop out of the trial if they try to force me to go to the braf arm because I think I need to continue the nivo part of my treatment until proven otherwise.
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