› Forums › General Melanoma Community › ipilumimab / nivolumab phase 3 trial – observations
- This topic has 33 replies, 7 voices, and was last updated 9 years, 6 months ago by
Globetrotter.
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- January 6, 2014 at 10:07 pm
hi … i'm a Danish guy looking to enter a Bristol Myers Sqiubb phase 3 trial of ipilumimab and/or nivolumab and I was wondering if anyone else in this forum is participating in this trial already and what your observations have been so far – both in terms of tumor effects as well as side effects … looking forward to your comments !
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- January 6, 2014 at 10:57 pm
I am also very interested in this trial, would love to hear some responses.
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- January 7, 2014 at 6:03 am
Here is a thread from MIF.http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34464&hilit=Ipi+nivo+trial
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- January 7, 2014 at 6:03 am
Here is a thread from MIF.http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34464&hilit=Ipi+nivo+trial
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- January 7, 2014 at 1:18 pm
My husband is on the trial. I just posted on his scans. I have heard that there are many people getting great results. Unfortunately, the phase one trial is closed. I would check with Catherine Poole at MIF for latest trial information. Wishing you the very best!
Maureen
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- January 7, 2014 at 1:18 pm
My husband is on the trial. I just posted on his scans. I have heard that there are many people getting great results. Unfortunately, the phase one trial is closed. I would check with Catherine Poole at MIF for latest trial information. Wishing you the very best!
Maureen
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- January 7, 2014 at 2:22 pm
I'm on the phase 3 trial, I had my first treatment on December 11th , so far I had minimum side effects, some itchy rush on my palms and abdomen
, and last weeks bloodwork showed slightly elevated lipase levels that is usually seen with an anti PD1. Since the trial is blinded, I don't know what I'm getting. I can only hope that the treatment is working. I will have scans mid February!
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- January 7, 2014 at 2:22 pm
I'm on the phase 3 trial, I had my first treatment on December 11th , so far I had minimum side effects, some itchy rush on my palms and abdomen
, and last weeks bloodwork showed slightly elevated lipase levels that is usually seen with an anti PD1. Since the trial is blinded, I don't know what I'm getting. I can only hope that the treatment is working. I will have scans mid February!
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- January 7, 2014 at 10:40 pm
hi sofistef … sounds like it is still early days for you in this trial – lets stay in touch and share learnings … but at least it sounds like the side effect are 'manageable' for you !!
wishing you a cancer free 2014 … and all the best with the scan in feb!!!
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- January 7, 2014 at 10:40 pm
hi sofistef … sounds like it is still early days for you in this trial – lets stay in touch and share learnings … but at least it sounds like the side effect are 'manageable' for you !!
wishing you a cancer free 2014 … and all the best with the scan in feb!!!
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- January 7, 2014 at 10:40 pm
hi sofistef … sounds like it is still early days for you in this trial – lets stay in touch and share learnings … but at least it sounds like the side effect are 'manageable' for you !!
wishing you a cancer free 2014 … and all the best with the scan in feb!!!
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- January 8, 2014 at 12:39 am
Hi Globetrotter,
It is indeed early to tell if the treatment is working, I entered in this trial with 1 lymph node involved, the lung nodule I had was removed for biopsy prior to the treatment. Hopefully the treatment will work .Best of luck to you and let’s hope this trial will bring us the NED status. When did you start the trial? -
- January 8, 2014 at 12:39 am
Hi Globetrotter,
It is indeed early to tell if the treatment is working, I entered in this trial with 1 lymph node involved, the lung nodule I had was removed for biopsy prior to the treatment. Hopefully the treatment will work .Best of luck to you and let’s hope this trial will bring us the NED status. When did you start the trial? -
- November 4, 2014 at 10:00 am
Yes – not only did I enter the trial in Jan'14 – already following the first PET/CT scan after the possible end of the Ipi treatment (in Apr'14) were there shrinkage i all tumors and all metasteses were "metabolically inactive" … continued shrinkage after following scans (every 6 weeks) and in Aug'14 I was declared NED!!!! Simply amazing !!! and on top of this- the side effect have been nearly non-existent … talk about a dream scenario for a cancer treatment … I'm just soooo thrillled and greatful 🙂 … still in the trail but considering for how long to stay on treatment (assuming I'm not on the Ipi/Nivo-Placebo leg ) … I mean – I'm NED, the treatment clearly worked and should it reappear, then I can always get back onto anti-PD1 treatments (if nothing else with Pembrolizumab) … or ??? anyone else having these considerations?
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- November 4, 2014 at 10:00 am
Yes – not only did I enter the trial in Jan'14 – already following the first PET/CT scan after the possible end of the Ipi treatment (in Apr'14) were there shrinkage i all tumors and all metasteses were "metabolically inactive" … continued shrinkage after following scans (every 6 weeks) and in Aug'14 I was declared NED!!!! Simply amazing !!! and on top of this- the side effect have been nearly non-existent … talk about a dream scenario for a cancer treatment … I'm just soooo thrillled and greatful 🙂 … still in the trail but considering for how long to stay on treatment (assuming I'm not on the Ipi/Nivo-Placebo leg ) … I mean – I'm NED, the treatment clearly worked and should it reappear, then I can always get back onto anti-PD1 treatments (if nothing else with Pembrolizumab) … or ??? anyone else having these considerations?
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- November 4, 2014 at 10:00 am
Yes – not only did I enter the trial in Jan'14 – already following the first PET/CT scan after the possible end of the Ipi treatment (in Apr'14) were there shrinkage i all tumors and all metasteses were "metabolically inactive" … continued shrinkage after following scans (every 6 weeks) and in Aug'14 I was declared NED!!!! Simply amazing !!! and on top of this- the side effect have been nearly non-existent … talk about a dream scenario for a cancer treatment … I'm just soooo thrillled and greatful 🙂 … still in the trail but considering for how long to stay on treatment (assuming I'm not on the Ipi/Nivo-Placebo leg ) … I mean – I'm NED, the treatment clearly worked and should it reappear, then I can always get back onto anti-PD1 treatments (if nothing else with Pembrolizumab) … or ??? anyone else having these considerations?
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- January 8, 2014 at 12:39 am
Hi Globetrotter,
It is indeed early to tell if the treatment is working, I entered in this trial with 1 lymph node involved, the lung nodule I had was removed for biopsy prior to the treatment. Hopefully the treatment will work .Best of luck to you and let’s hope this trial will bring us the NED status. When did you start the trial? -
- January 7, 2014 at 2:22 pm
I'm on the phase 3 trial, I had my first treatment on December 11th , so far I had minimum side effects, some itchy rush on my palms and abdomen
, and last weeks bloodwork showed slightly elevated lipase levels that is usually seen with an anti PD1. Since the trial is blinded, I don't know what I'm getting. I can only hope that the treatment is working. I will have scans mid February!
-
- January 7, 2014 at 1:18 pm
My husband is on the trial. I just posted on his scans. I have heard that there are many people getting great results. Unfortunately, the phase one trial is closed. I would check with Catherine Poole at MIF for latest trial information. Wishing you the very best!
Maureen
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- January 7, 2014 at 10:30 pm
thx for the quick response, momrn5
i think the referenced thread refer to the equivalent phase 1 trial where ipi and nivo was used sequentially … in this phase 3 trial one of the three legs use ipi+nivo in combination (for the 1st three mths and then nivo for the remaindef of the year)
would be good to have an ongoing thread where melanoma patients on this bms trial could exchange learnings and observations …
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- January 7, 2014 at 10:30 pm
thx for the quick response, momrn5
i think the referenced thread refer to the equivalent phase 1 trial where ipi and nivo was used sequentially … in this phase 3 trial one of the three legs use ipi+nivo in combination (for the 1st three mths and then nivo for the remaindef of the year)
would be good to have an ongoing thread where melanoma patients on this bms trial could exchange learnings and observations …
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- January 7, 2014 at 10:30 pm
thx for the quick response, momrn5
i think the referenced thread refer to the equivalent phase 1 trial where ipi and nivo was used sequentially … in this phase 3 trial one of the three legs use ipi+nivo in combination (for the 1st three mths and then nivo for the remaindef of the year)
would be good to have an ongoing thread where melanoma patients on this bms trial could exchange learnings and observations …
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- January 7, 2014 at 6:03 am
Here is a thread from MIF.http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34464&hilit=Ipi+nivo+trial
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- January 9, 2014 at 3:50 am
My Husband is currently enrolled in this trial. He had the first infusion on November 1st, today he had infusion nr. 7, next week it's the last one and he is scheduled for the CT scan on Jan. 28.
We don't know in which arm of the trial he is but he had side effects characteristic to both nivo and ipi. He had flu like simptoms ( high fever, very dry cough, sore joints) after the first 4 infusions. He had blurry vision after the second infusion. He had severe stomach pain after his 5th, but lasted only two days, and no loose stools. He has very itchy skin, started on his arms and progressed to almost all body surface ( except feet and soles). He has 3 patches of white skin and he now has several strands of white hair .
He pretty much had every single one of the side effects listed for both drugs, but fortunately none of them was extreme, we never had to run to the ER for treatment. He only took flu medicine (DayQuil/NyQuil, Reactine 2/ day for skin rashes and itchiness, he was prescribed a steroid cream but he didn't use it).
During all this time he went at work full time, just office job, nothing physical, and that kept him happy and well balanced. We managed to take a 8 day holiday over Christmas, but we kept it low key because come 7:30 pm he was very tired.
we strongly believe the treatment works, the one tumour he had in his groin was the size of a golf ball and now it's half the size, but we are not going to know for sure until the scan at the end of January.
i hope this answer some of your questions, please let me know what else would you like to know.
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- January 9, 2014 at 3:50 am
My Husband is currently enrolled in this trial. He had the first infusion on November 1st, today he had infusion nr. 7, next week it's the last one and he is scheduled for the CT scan on Jan. 28.
We don't know in which arm of the trial he is but he had side effects characteristic to both nivo and ipi. He had flu like simptoms ( high fever, very dry cough, sore joints) after the first 4 infusions. He had blurry vision after the second infusion. He had severe stomach pain after his 5th, but lasted only two days, and no loose stools. He has very itchy skin, started on his arms and progressed to almost all body surface ( except feet and soles). He has 3 patches of white skin and he now has several strands of white hair .
He pretty much had every single one of the side effects listed for both drugs, but fortunately none of them was extreme, we never had to run to the ER for treatment. He only took flu medicine (DayQuil/NyQuil, Reactine 2/ day for skin rashes and itchiness, he was prescribed a steroid cream but he didn't use it).
During all this time he went at work full time, just office job, nothing physical, and that kept him happy and well balanced. We managed to take a 8 day holiday over Christmas, but we kept it low key because come 7:30 pm he was very tired.
we strongly believe the treatment works, the one tumour he had in his groin was the size of a golf ball and now it's half the size, but we are not going to know for sure until the scan at the end of January.
i hope this answer some of your questions, please let me know what else would you like to know.
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- January 9, 2014 at 5:31 am
hi maria,
thanks for the elaborate reply – I think we can all benefit from sharing our experiences durings this trial … I hope to commence treatments as part of this BMS Ipi/Nivo trial next week and like your husband I hope to manage side effects and find an appropriate work/life balance during this trial!
all the best with the scans in Jan – let's stay in touch
Wishing u all a cancer free 2014!!
/Claus
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- January 9, 2014 at 5:31 am
hi maria,
thanks for the elaborate reply – I think we can all benefit from sharing our experiences durings this trial … I hope to commence treatments as part of this BMS Ipi/Nivo trial next week and like your husband I hope to manage side effects and find an appropriate work/life balance during this trial!
all the best with the scans in Jan – let's stay in touch
Wishing u all a cancer free 2014!!
/Claus
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- January 9, 2014 at 5:31 am
hi maria,
thanks for the elaborate reply – I think we can all benefit from sharing our experiences durings this trial … I hope to commence treatments as part of this BMS Ipi/Nivo trial next week and like your husband I hope to manage side effects and find an appropriate work/life balance during this trial!
all the best with the scans in Jan – let's stay in touch
Wishing u all a cancer free 2014!!
/Claus
-
- January 9, 2014 at 3:50 am
My Husband is currently enrolled in this trial. He had the first infusion on November 1st, today he had infusion nr. 7, next week it's the last one and he is scheduled for the CT scan on Jan. 28.
We don't know in which arm of the trial he is but he had side effects characteristic to both nivo and ipi. He had flu like simptoms ( high fever, very dry cough, sore joints) after the first 4 infusions. He had blurry vision after the second infusion. He had severe stomach pain after his 5th, but lasted only two days, and no loose stools. He has very itchy skin, started on his arms and progressed to almost all body surface ( except feet and soles). He has 3 patches of white skin and he now has several strands of white hair .
He pretty much had every single one of the side effects listed for both drugs, but fortunately none of them was extreme, we never had to run to the ER for treatment. He only took flu medicine (DayQuil/NyQuil, Reactine 2/ day for skin rashes and itchiness, he was prescribed a steroid cream but he didn't use it).
During all this time he went at work full time, just office job, nothing physical, and that kept him happy and well balanced. We managed to take a 8 day holiday over Christmas, but we kept it low key because come 7:30 pm he was very tired.
we strongly believe the treatment works, the one tumour he had in his groin was the size of a golf ball and now it's half the size, but we are not going to know for sure until the scan at the end of January.
i hope this answer some of your questions, please let me know what else would you like to know.
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