› Forums › General Melanoma Community › Side effects — or lack of them?! — Ipi-Nivo combination trial (CA209-004)
- This topic has 15 replies, 5 voices, and was last updated 10 years, 6 months ago by
rballard23071.
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- October 5, 2013 at 10:48 pm
hi — my name is Ursula — I've posted a few times over on the MIF forums, and may have met some of you there.
I've got stage IV melanoma with several abdominal mets that turned up on my follow-up CT scans back in June. I'm 38 and have three young sons (2, 4 and 6).
I'm determined to get to their high school graduations. (stats be damned..!)
I'm part of the BMS phase I open-label trial looking at the combo of Ipi & Nivolumab (BMS's anti-PD-1 inhibitor).
I see Dr. Wolchok in NYC, though I live in Canada and am flying back & forth.
I'm at week 11, and so next week I go for my fourth combination treatment. My scans are at the end of Oct.
I'm a bit anxious, because I've basically had no side effects at all, and I know that some studies have suggested that responders to Yervoy tend to have worse side effects (grade III/IV immune reactions)
Does anyone know if this has turned out to the be case? Is it crazy to be wishing for side effects? I just want some indication that these meds are working!!
I've had a little fatigue — but who can sort that out from airplane-related-tiredness and being with little boys all day?! And I have a few little red spots on my forearms that might be related. I had some diarrhea a couple of weeks ago that I was all excited about (!?) – but it went away as fast as it came.
One promising thing is that I used to have a longitudinal brown stripe on my right thumbnail, which no longer goes all the way to the base of my nail. (the new-growth part of the nail is clear) So I pray that this is my own little bioassay and that the same thing is happening in my abdomen. (if anyone wants to see a photo of the nail on my personal blog, it's ursulasmelanomablog.wordpress.com http://ursulasmelanomablog.wordpress.com
(As an aside — I don't know how to get rid of the inaccurate link to the blog in my signature! How do I access my profile on this site?)
I know that Maureen & Brian are on this same trial — I'll look forward to hear about others' experiences.
all the best,
Ursula
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- October 6, 2013 at 12:35 am
Hi Ursula,
My husband has been on an Ipi Trial (10mg/kg) with GM-CSF and while it is different I just wanted to say he didn't have any of the adverse side effects from the Ipi and he is now NED. I just hope this will be the same with you. If you want to read more check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- October 6, 2013 at 1:33 am
Hi Ursula– I have been on the BMS Ipi/Nivo trial for a year now. I wouldn’t be too discouraged about lack of side effects at this point — the important thing is the how the treatment is affecting the tumors. I am stable at the moment with @ half the tumor load I started with– not NED.but at a level I can tolerate, and hopefully can live with for a long time. I had very few side effects by week 11 though I was prepared with an arsenal of anti-itch ointments. I eventually came to itch and lose quite a bit of skin and hair color (oh well!). So, to put your mind at ease– I am considered a responder and had no side effects by 11 weeks– that could be a lucky thing. The combo can be very effective– I hear everyone is different as far as secondary effects. I hope it goes all the way for you– without the need to scratch. I also go to MSKCC– perhaps I’ll see you on the 4th floor some day. -
- October 6, 2013 at 8:58 am
My husband Bill will start this trial in Pittsburg in about a week or so. Any advice would be so welcomed! That’s wonderful that both of you have few side effects! Hope you both continue to respond well!!
Maureen -
- October 6, 2013 at 8:58 am
My husband Bill will start this trial in Pittsburg in about a week or so. Any advice would be so welcomed! That’s wonderful that both of you have few side effects! Hope you both continue to respond well!!
Maureen -
- October 6, 2013 at 8:58 am
My husband Bill will start this trial in Pittsburg in about a week or so. Any advice would be so welcomed! That’s wonderful that both of you have few side effects! Hope you both continue to respond well!!
Maureen -
- October 26, 2013 at 8:17 pm
Hi, my wife is a Stage 4 melanoma patient whose initial diagnosis and surgery was 16 years ago and we were shocked with the recurrance this summer. She is now on the BMS Ipi/Nivo trial also. She was only able to tolerate two treatments of the Ipi before severe GI problems caused a halt in the treatments. After 6 weeks on steriods to calm her GI tract, she will begin biweekly treatments of Nivo next week, and was very discouraged when the initial follow up ct scan this past week showed mixed results. I am interested to learn if you were on the sequential BMS study and if so, did you receive the Ipy first and what was your experience with nivo? We have had a tough time distinguishing between the side effects from ipi and the steroids and those symtoms that may be caused by the cancer. Thanks for any experiences you are willing and able to share.
If there are any others currently on or finished the BMS ipi/nivo trial and would be willing to share there experiences we would be very grateful.
Ty
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- October 26, 2013 at 8:17 pm
Hi, my wife is a Stage 4 melanoma patient whose initial diagnosis and surgery was 16 years ago and we were shocked with the recurrance this summer. She is now on the BMS Ipi/Nivo trial also. She was only able to tolerate two treatments of the Ipi before severe GI problems caused a halt in the treatments. After 6 weeks on steriods to calm her GI tract, she will begin biweekly treatments of Nivo next week, and was very discouraged when the initial follow up ct scan this past week showed mixed results. I am interested to learn if you were on the sequential BMS study and if so, did you receive the Ipy first and what was your experience with nivo? We have had a tough time distinguishing between the side effects from ipi and the steroids and those symtoms that may be caused by the cancer. Thanks for any experiences you are willing and able to share.
If there are any others currently on or finished the BMS ipi/nivo trial and would be willing to share there experiences we would be very grateful.
Ty
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- October 26, 2013 at 8:17 pm
Hi, my wife is a Stage 4 melanoma patient whose initial diagnosis and surgery was 16 years ago and we were shocked with the recurrance this summer. She is now on the BMS Ipi/Nivo trial also. She was only able to tolerate two treatments of the Ipi before severe GI problems caused a halt in the treatments. After 6 weeks on steriods to calm her GI tract, she will begin biweekly treatments of Nivo next week, and was very discouraged when the initial follow up ct scan this past week showed mixed results. I am interested to learn if you were on the sequential BMS study and if so, did you receive the Ipy first and what was your experience with nivo? We have had a tough time distinguishing between the side effects from ipi and the steroids and those symtoms that may be caused by the cancer. Thanks for any experiences you are willing and able to share.
If there are any others currently on or finished the BMS ipi/nivo trial and would be willing to share there experiences we would be very grateful.
Ty
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- October 6, 2013 at 1:33 am
Hi Ursula– I have been on the BMS Ipi/Nivo trial for a year now. I wouldn’t be too discouraged about lack of side effects at this point — the important thing is the how the treatment is affecting the tumors. I am stable at the moment with @ half the tumor load I started with– not NED.but at a level I can tolerate, and hopefully can live with for a long time. I had very few side effects by week 11 though I was prepared with an arsenal of anti-itch ointments. I eventually came to itch and lose quite a bit of skin and hair color (oh well!). So, to put your mind at ease– I am considered a responder and had no side effects by 11 weeks– that could be a lucky thing. The combo can be very effective– I hear everyone is different as far as secondary effects. I hope it goes all the way for you– without the need to scratch. I also go to MSKCC– perhaps I’ll see you on the 4th floor some day. -
- October 6, 2013 at 1:33 am
Hi Ursula– I have been on the BMS Ipi/Nivo trial for a year now. I wouldn’t be too discouraged about lack of side effects at this point — the important thing is the how the treatment is affecting the tumors. I am stable at the moment with @ half the tumor load I started with– not NED.but at a level I can tolerate, and hopefully can live with for a long time. I had very few side effects by week 11 though I was prepared with an arsenal of anti-itch ointments. I eventually came to itch and lose quite a bit of skin and hair color (oh well!). So, to put your mind at ease– I am considered a responder and had no side effects by 11 weeks– that could be a lucky thing. The combo can be very effective– I hear everyone is different as far as secondary effects. I hope it goes all the way for you– without the need to scratch. I also go to MSKCC– perhaps I’ll see you on the 4th floor some day.
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- October 6, 2013 at 12:35 am
Hi Ursula,
My husband has been on an Ipi Trial (10mg/kg) with GM-CSF and while it is different I just wanted to say he didn't have any of the adverse side effects from the Ipi and he is now NED. I just hope this will be the same with you. If you want to read more check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- October 6, 2013 at 12:35 am
Hi Ursula,
My husband has been on an Ipi Trial (10mg/kg) with GM-CSF and while it is different I just wanted to say he didn't have any of the adverse side effects from the Ipi and he is now NED. I just hope this will be the same with you. If you want to read more check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- October 26, 2013 at 9:47 pm
Ursala,
I am also on the trial with Ipi and Nivo. My trial is looking at whether it makes any difference which one you get first. I had the Ipi first and I have not had side affect either. One week exactly after my first treatment I got hives that lasted about a week and a half. I also had an increase in my Vertiligo – but that just means the drugs are working. I have a tumor on the side of my leg and I see the decrease on a regular basis. I am hoping to start Nivo soon – one of my scans came back strange so I might have to wait. Keep the faith and I am thinking about you!
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- October 26, 2013 at 9:47 pm
Ursala,
I am also on the trial with Ipi and Nivo. My trial is looking at whether it makes any difference which one you get first. I had the Ipi first and I have not had side affect either. One week exactly after my first treatment I got hives that lasted about a week and a half. I also had an increase in my Vertiligo – but that just means the drugs are working. I have a tumor on the side of my leg and I see the decrease on a regular basis. I am hoping to start Nivo soon – one of my scans came back strange so I might have to wait. Keep the faith and I am thinking about you!
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- October 26, 2013 at 9:47 pm
Ursala,
I am also on the trial with Ipi and Nivo. My trial is looking at whether it makes any difference which one you get first. I had the Ipi first and I have not had side affect either. One week exactly after my first treatment I got hives that lasted about a week and a half. I also had an increase in my Vertiligo – but that just means the drugs are working. I have a tumor on the side of my leg and I see the decrease on a regular basis. I am hoping to start Nivo soon – one of my scans came back strange so I might have to wait. Keep the faith and I am thinking about you!
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