› Forums › General Melanoma Community › Combo ipi/nivo success/failures?
- This topic has 18 replies, 6 voices, and was last updated 8 years, 8 months ago by ed williams.
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- August 1, 2015 at 9:41 pm
Hi, I'm hoping to hear more from those out there who have gone through the combination ipilimumab and nivolumab treatment, either on trial or through expanded access. Has it worked for you? Did it not work? What side effects gave you the most problems – and what helped you through treatment?
My dad is going to start this on August 18th. He'll be traveling for the treatment and staying with me in Ann Arbor, MI each time and I would appreciate any information and insight in order to prepare myself. Thank you in advance!
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- August 1, 2015 at 9:55 pm
I will keep my status updated at
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- August 1, 2015 at 9:55 pm
I will keep my status updated at
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- August 1, 2015 at 9:55 pm
I will keep my status updated at
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- August 2, 2015 at 1:40 am
Hello LaurenE,
I had melanoma in my brain, lung, liver, adrenal gland and gall bladder. 2 Cyberkifes and 2 open brain surgeries, gall bladder removed and one lung biopsy. I started the nivo/ippi (1mg/3mg) combo in January 2012 at Yale. I itched for 2 years straight, lost my pituitary, thyroid and adrenal glands. I have been cancer free for 3 years now. Just take 2 pills a day to replace glands. I did receive bad blood clots from one brain surgery. Any questions let me know.
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- August 2, 2015 at 1:40 am
Hello LaurenE,
I had melanoma in my brain, lung, liver, adrenal gland and gall bladder. 2 Cyberkifes and 2 open brain surgeries, gall bladder removed and one lung biopsy. I started the nivo/ippi (1mg/3mg) combo in January 2012 at Yale. I itched for 2 years straight, lost my pituitary, thyroid and adrenal glands. I have been cancer free for 3 years now. Just take 2 pills a day to replace glands. I did receive bad blood clots from one brain surgery. Any questions let me know.
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- August 2, 2015 at 1:40 am
Hello LaurenE,
I had melanoma in my brain, lung, liver, adrenal gland and gall bladder. 2 Cyberkifes and 2 open brain surgeries, gall bladder removed and one lung biopsy. I started the nivo/ippi (1mg/3mg) combo in January 2012 at Yale. I itched for 2 years straight, lost my pituitary, thyroid and adrenal glands. I have been cancer free for 3 years now. Just take 2 pills a day to replace glands. I did receive bad blood clots from one brain surgery. Any questions let me know.
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- August 2, 2015 at 4:00 am
Hey Lauren,
Your dad is getting a treatment combo that has the best response rate going. Here is some info that might be helpful to you:
A post with the latest regarding the combo out of ASCO 2015: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-nivo-plus-ipi-vs-ipi-alone.html
And an older synopsis of info for the combo as it came along: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/expanded-access-for-ipinivo-combo-and.html
Side effects tend to be rashes and immunological. Ipi is the bad guy for side effects in the combo, with similar immunologic side effects as anti-PD1…just more….sometimes. I put this together regarding the side effects of nivo: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
But…the combo provides a much better response rate! What'cha gonna do? I wish your dad well. Celeste
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- August 2, 2015 at 4:00 am
Hey Lauren,
Your dad is getting a treatment combo that has the best response rate going. Here is some info that might be helpful to you:
A post with the latest regarding the combo out of ASCO 2015: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-nivo-plus-ipi-vs-ipi-alone.html
And an older synopsis of info for the combo as it came along: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/expanded-access-for-ipinivo-combo-and.html
Side effects tend to be rashes and immunological. Ipi is the bad guy for side effects in the combo, with similar immunologic side effects as anti-PD1…just more….sometimes. I put this together regarding the side effects of nivo: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
But…the combo provides a much better response rate! What'cha gonna do? I wish your dad well. Celeste
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- August 2, 2015 at 4:00 am
Hey Lauren,
Your dad is getting a treatment combo that has the best response rate going. Here is some info that might be helpful to you:
A post with the latest regarding the combo out of ASCO 2015: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-nivo-plus-ipi-vs-ipi-alone.html
And an older synopsis of info for the combo as it came along: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/07/expanded-access-for-ipinivo-combo-and.html
Side effects tend to be rashes and immunological. Ipi is the bad guy for side effects in the combo, with similar immunologic side effects as anti-PD1…just more….sometimes. I put this together regarding the side effects of nivo: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html
But…the combo provides a much better response rate! What'cha gonna do? I wish your dad well. Celeste
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- August 2, 2015 at 5:12 pm
Hi Lauren – I began this combo 9 days ago. No side effects yet but doc says that's normal. 2nd infusion in 12 days. May God bless you!
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- August 3, 2015 at 6:41 pm
Check this column out by a doc from Mayo, he talks about this combo: http://melanomainternational.org/2015/08/august-3-2015-ipianti-pd1-ocular-mucosal-vaccines
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- August 3, 2015 at 6:41 pm
Check this column out by a doc from Mayo, he talks about this combo: http://melanomainternational.org/2015/08/august-3-2015-ipianti-pd1-ocular-mucosal-vaccines
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- August 3, 2015 at 6:41 pm
Check this column out by a doc from Mayo, he talks about this combo: http://melanomainternational.org/2015/08/august-3-2015-ipianti-pd1-ocular-mucosal-vaccines
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- August 3, 2015 at 10:44 pm
Hi Lauren, I have been part of the trial that they now call checkmate 67 for a year and 6 months. The meds have controlled the tumors in my lungs and no new tumors have shown up. As far as side effects, it has been a pretty easy ride with just fatigue to deal with. Some mild skin issues (itching) for the first 4 or 5 months but nothing that required any special treatment. The trial was set up double blinded so that we don't know which of the three arms we are on. I had reduction of tumor size on the first scans at 12 weeks, which is consistant with Pd-1 drugs. Ipi from what I have read usually takes a little longer to work. Wishing you the best in the journey!!! Ed
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- August 3, 2015 at 10:44 pm
Hi Lauren, I have been part of the trial that they now call checkmate 67 for a year and 6 months. The meds have controlled the tumors in my lungs and no new tumors have shown up. As far as side effects, it has been a pretty easy ride with just fatigue to deal with. Some mild skin issues (itching) for the first 4 or 5 months but nothing that required any special treatment. The trial was set up double blinded so that we don't know which of the three arms we are on. I had reduction of tumor size on the first scans at 12 weeks, which is consistant with Pd-1 drugs. Ipi from what I have read usually takes a little longer to work. Wishing you the best in the journey!!! Ed
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- August 3, 2015 at 10:44 pm
Hi Lauren, I have been part of the trial that they now call checkmate 67 for a year and 6 months. The meds have controlled the tumors in my lungs and no new tumors have shown up. As far as side effects, it has been a pretty easy ride with just fatigue to deal with. Some mild skin issues (itching) for the first 4 or 5 months but nothing that required any special treatment. The trial was set up double blinded so that we don't know which of the three arms we are on. I had reduction of tumor size on the first scans at 12 weeks, which is consistant with Pd-1 drugs. Ipi from what I have read usually takes a little longer to work. Wishing you the best in the journey!!! Ed
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