› Forums › Cutaneous Melanoma Community › Anybody in the Nivolumab and INCCB24360 (epacadostat) trial?
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ECHO.
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- February 9, 2016 at 9:01 pm
Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 – December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki
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- February 9, 2016 at 9:35 pm
I'm not on the trial, but I looked up epacadostat because I was curious. This is an IDO inhibitor. The combination of PD-1 and IDOi was viewed as very promising in 2014–and then we stopped hearing about it. If you do a Google search, there seems to be some promising data. If you search Gangadhar (UPenn) on YouTube, there is a short video produced by OncLive. She cites low toxicity (no Grade 4 reactions and only a few grade 3 rashes) and a higher than 50% response rate in melanoma patients. Good luck–and please let us know how it goes.
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- February 9, 2016 at 9:50 pm
Thank you so much for pointing me towards some info! They gave me a 30 pg binder of the trial to read over but I like hearing from people. I go in next Friday to start my pre-screening (brain mri, chest ct, blood work, a tumor biopsy..ect) and we're shooting for my first treatment to start March 3rd. I will keep in touch! Thank you again!
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- February 9, 2016 at 9:50 pm
Thank you so much for pointing me towards some info! They gave me a 30 pg binder of the trial to read over but I like hearing from people. I go in next Friday to start my pre-screening (brain mri, chest ct, blood work, a tumor biopsy..ect) and we're shooting for my first treatment to start March 3rd. I will keep in touch! Thank you again!
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- February 9, 2016 at 9:50 pm
Thank you so much for pointing me towards some info! They gave me a 30 pg binder of the trial to read over but I like hearing from people. I go in next Friday to start my pre-screening (brain mri, chest ct, blood work, a tumor biopsy..ect) and we're shooting for my first treatment to start March 3rd. I will keep in touch! Thank you again!
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- February 9, 2016 at 9:35 pm
I'm not on the trial, but I looked up epacadostat because I was curious. This is an IDO inhibitor. The combination of PD-1 and IDOi was viewed as very promising in 2014–and then we stopped hearing about it. If you do a Google search, there seems to be some promising data. If you search Gangadhar (UPenn) on YouTube, there is a short video produced by OncLive. She cites low toxicity (no Grade 4 reactions and only a few grade 3 rashes) and a higher than 50% response rate in melanoma patients. Good luck–and please let us know how it goes.
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- February 9, 2016 at 9:35 pm
I'm not on the trial, but I looked up epacadostat because I was curious. This is an IDO inhibitor. The combination of PD-1 and IDOi was viewed as very promising in 2014–and then we stopped hearing about it. If you do a Google search, there seems to be some promising data. If you search Gangadhar (UPenn) on YouTube, there is a short video produced by OncLive. She cites low toxicity (no Grade 4 reactions and only a few grade 3 rashes) and a higher than 50% response rate in melanoma patients. Good luck–and please let us know how it goes.
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- February 9, 2016 at 11:39 pm
Hey Niki,
I did Nivo in a trial situation in 2010, so I completely understand the "clinical trial" scenario. Somtimes it felt as though I was signing papers to the effect that: "If I grow three heads and turn purple…with or without my melanoma….I will hold neither the institution, researcher nor BMS accountable…but will go happily on my way…lucky for the chance to have played along at all!" On the good side, I remain NED after having been Stage IV with brain and lung mets!
Mat is right about INCBO24360 holding up well in studies in 2014. Here (mid-post) is a report of it combined with ipi: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/weber-presentation-on-present-ipi.html
It seems to have helped a good deal as compared to ipi alone responses (a 33% response rate rather than the average 15% with ipi alone) and was reported to be well tolerated. Hopefully, it will do even better when combined with Nivo and its 40% expected response rate when administered alone.
Not exactly what you were looking for, but hope it helps. Hang in there. Celeste
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- May 22, 2016 at 6:01 am
Started in this trial on 4/12. Had to suspend drugs for one week due to bad rash (not sure stage of the rash), but it was an adverse reaction to the drugs. Now the rash seems to have gone away and i'm back on the drugs again.
only other side effect is i'm easily fatiqued and tend to sleep more than usual. Even the rash was fairly tolerable even at its worst(about 4/25). So, thus far, it's been rather easily taken and the side effects are minimal.
Don't know if it's doing any good so far, as my first scan isn't until 6/3. I take 6 pills orally evey day plus infusions one ever other two weeks which take place at the hospital. I'm optimistic that this combo will produce some positive results where the previous stuff has done little good.
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- May 22, 2016 at 6:01 am
Started in this trial on 4/12. Had to suspend drugs for one week due to bad rash (not sure stage of the rash), but it was an adverse reaction to the drugs. Now the rash seems to have gone away and i'm back on the drugs again.
only other side effect is i'm easily fatiqued and tend to sleep more than usual. Even the rash was fairly tolerable even at its worst(about 4/25). So, thus far, it's been rather easily taken and the side effects are minimal.
Don't know if it's doing any good so far, as my first scan isn't until 6/3. I take 6 pills orally evey day plus infusions one ever other two weeks which take place at the hospital. I'm optimistic that this combo will produce some positive results where the previous stuff has done little good.
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- May 22, 2016 at 6:01 am
Started in this trial on 4/12. Had to suspend drugs for one week due to bad rash (not sure stage of the rash), but it was an adverse reaction to the drugs. Now the rash seems to have gone away and i'm back on the drugs again.
only other side effect is i'm easily fatiqued and tend to sleep more than usual. Even the rash was fairly tolerable even at its worst(about 4/25). So, thus far, it's been rather easily taken and the side effects are minimal.
Don't know if it's doing any good so far, as my first scan isn't until 6/3. I take 6 pills orally evey day plus infusions one ever other two weeks which take place at the hospital. I'm optimistic that this combo will produce some positive results where the previous stuff has done little good.
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- February 9, 2016 at 11:39 pm
Hey Niki,
I did Nivo in a trial situation in 2010, so I completely understand the "clinical trial" scenario. Somtimes it felt as though I was signing papers to the effect that: "If I grow three heads and turn purple…with or without my melanoma….I will hold neither the institution, researcher nor BMS accountable…but will go happily on my way…lucky for the chance to have played along at all!" On the good side, I remain NED after having been Stage IV with brain and lung mets!
Mat is right about INCBO24360 holding up well in studies in 2014. Here (mid-post) is a report of it combined with ipi: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/weber-presentation-on-present-ipi.html
It seems to have helped a good deal as compared to ipi alone responses (a 33% response rate rather than the average 15% with ipi alone) and was reported to be well tolerated. Hopefully, it will do even better when combined with Nivo and its 40% expected response rate when administered alone.
Not exactly what you were looking for, but hope it helps. Hang in there. Celeste
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- February 9, 2016 at 11:39 pm
Hey Niki,
I did Nivo in a trial situation in 2010, so I completely understand the "clinical trial" scenario. Somtimes it felt as though I was signing papers to the effect that: "If I grow three heads and turn purple…with or without my melanoma….I will hold neither the institution, researcher nor BMS accountable…but will go happily on my way…lucky for the chance to have played along at all!" On the good side, I remain NED after having been Stage IV with brain and lung mets!
Mat is right about INCBO24360 holding up well in studies in 2014. Here (mid-post) is a report of it combined with ipi: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/weber-presentation-on-present-ipi.html
It seems to have helped a good deal as compared to ipi alone responses (a 33% response rate rather than the average 15% with ipi alone) and was reported to be well tolerated. Hopefully, it will do even better when combined with Nivo and its 40% expected response rate when administered alone.
Not exactly what you were looking for, but hope it helps. Hang in there. Celeste
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- February 9, 2016 at 11:58 pm
Best of luck Niki. Sounds like a great trial.
Brian
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- July 2, 2016 at 4:29 pm
Hey, Niki. I am considering the same trial. Curious to hear how your first scan came out on 6/3/16.
I am 65-yo male, redhead, freckles, lots of sun exposure as kid. I've had probably 10 basil cell carcinomas beginning 1992 and then most of others in past 10 years, one melanoma in situ 5 years ago. My dermatologist discoved advanced scalp melanoma this past Feb, it was excised along with lymph nodes– all clear! Unfortunately, subsequent CT scan and following PetCT found nodules in my lungs. I am asymptomatic and the nodues are small, but the biopsy was positive. I met with my doctor at UCSF Thursday and he offered the same trial you are on– alternative would be Opdivo alone. We are in the process of deciding, so gathering all information possible.
Thanks so much and all my best to you.
Rick
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- July 2, 2016 at 4:29 pm
Hey, Niki. I am considering the same trial. Curious to hear how your first scan came out on 6/3/16.
I am 65-yo male, redhead, freckles, lots of sun exposure as kid. I've had probably 10 basil cell carcinomas beginning 1992 and then most of others in past 10 years, one melanoma in situ 5 years ago. My dermatologist discoved advanced scalp melanoma this past Feb, it was excised along with lymph nodes– all clear! Unfortunately, subsequent CT scan and following PetCT found nodules in my lungs. I am asymptomatic and the nodues are small, but the biopsy was positive. I met with my doctor at UCSF Thursday and he offered the same trial you are on– alternative would be Opdivo alone. We are in the process of deciding, so gathering all information possible.
Thanks so much and all my best to you.
Rick
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- July 2, 2016 at 4:29 pm
Hey, Niki. I am considering the same trial. Curious to hear how your first scan came out on 6/3/16.
I am 65-yo male, redhead, freckles, lots of sun exposure as kid. I've had probably 10 basil cell carcinomas beginning 1992 and then most of others in past 10 years, one melanoma in situ 5 years ago. My dermatologist discoved advanced scalp melanoma this past Feb, it was excised along with lymph nodes– all clear! Unfortunately, subsequent CT scan and following PetCT found nodules in my lungs. I am asymptomatic and the nodues are small, but the biopsy was positive. I met with my doctor at UCSF Thursday and he offered the same trial you are on– alternative would be Opdivo alone. We are in the process of deciding, so gathering all information possible.
Thanks so much and all my best to you.
Rick
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- July 3, 2016 at 3:30 pm
Hi Niki,
2 1/2 years ago I was looking for any clinical trial that combined a PD1 drug with another drug — in other words any PD1 combo trial. I almost ended up on an anti-PDL1 drug (similar to PD1) plus a MEK drug. But that fell through and I ended up on a combo of Nivolumab and Lirilumab. For myself I was going to take whatever combo trial accepted me first, within reason. At the time I was worried about possible side effects from the MEK drug (pills) more so than PD1, since I had not had problems tolerating IPI previously.
I can't comment on epacadostat. I did like the idea of hitting it from two different angles, and also hoped that if the second drug did nothing, I'd still have the same chances of getting benefit from the Opdivo part of the trial.
Good luck — Kyle
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- July 3, 2016 at 3:30 pm
Hi Niki,
2 1/2 years ago I was looking for any clinical trial that combined a PD1 drug with another drug — in other words any PD1 combo trial. I almost ended up on an anti-PDL1 drug (similar to PD1) plus a MEK drug. But that fell through and I ended up on a combo of Nivolumab and Lirilumab. For myself I was going to take whatever combo trial accepted me first, within reason. At the time I was worried about possible side effects from the MEK drug (pills) more so than PD1, since I had not had problems tolerating IPI previously.
I can't comment on epacadostat. I did like the idea of hitting it from two different angles, and also hoped that if the second drug did nothing, I'd still have the same chances of getting benefit from the Opdivo part of the trial.
Good luck — Kyle
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- July 3, 2016 at 3:30 pm
Hi Niki,
2 1/2 years ago I was looking for any clinical trial that combined a PD1 drug with another drug — in other words any PD1 combo trial. I almost ended up on an anti-PDL1 drug (similar to PD1) plus a MEK drug. But that fell through and I ended up on a combo of Nivolumab and Lirilumab. For myself I was going to take whatever combo trial accepted me first, within reason. At the time I was worried about possible side effects from the MEK drug (pills) more so than PD1, since I had not had problems tolerating IPI previously.
I can't comment on epacadostat. I did like the idea of hitting it from two different angles, and also hoped that if the second drug did nothing, I'd still have the same chances of getting benefit from the Opdivo part of the trial.
Good luck — Kyle
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- September 8, 2016 at 7:34 pm
I know this topic is a bit old now, but the trial is current and so I wanted to post that I am also in this trial. I've had 3 infusions (every 2 weeks). So far the side effects have been itching (without rash) and minor fatigue. I notice that I sleep longer and occasionally take a nap which is rare for me. Daily functions aren't affected too much, but I realize the limitations of the drug when trying to complete Crossfit workouts as I cannot perform like I used too.
I had melanoma 2C on my right sideburn in 2012 and no lymph node involvement. It came back in 2015 just above my right ear as another atypical mole. This time it's 3C as the two sentinal nodes removed showed microscopic melanoma cells. They did a wide local excision and skin graft to cover it up. I tried ippy but only tollerated 3 infusions (10mg/kg dose) before stage 1 collitus set in. Then a few months went by and I noticed what I thought was scar tissue on my right sideburn that was bothersome. It turned out to be a lymph node full of melanoma.
I have a follow-up PET CT in 4 weeks, and I'm going to MD Anderson in Houston next week for a second opinion. I'll try to keep the post updated as this site has been a huge resource for me during this struggle and I hope that my info will be helpful to someone else. I'm currently a patient at UCSF.
Mark
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- September 8, 2016 at 7:34 pm
I know this topic is a bit old now, but the trial is current and so I wanted to post that I am also in this trial. I've had 3 infusions (every 2 weeks). So far the side effects have been itching (without rash) and minor fatigue. I notice that I sleep longer and occasionally take a nap which is rare for me. Daily functions aren't affected too much, but I realize the limitations of the drug when trying to complete Crossfit workouts as I cannot perform like I used too.
I had melanoma 2C on my right sideburn in 2012 and no lymph node involvement. It came back in 2015 just above my right ear as another atypical mole. This time it's 3C as the two sentinal nodes removed showed microscopic melanoma cells. They did a wide local excision and skin graft to cover it up. I tried ippy but only tollerated 3 infusions (10mg/kg dose) before stage 1 collitus set in. Then a few months went by and I noticed what I thought was scar tissue on my right sideburn that was bothersome. It turned out to be a lymph node full of melanoma.
I have a follow-up PET CT in 4 weeks, and I'm going to MD Anderson in Houston next week for a second opinion. I'll try to keep the post updated as this site has been a huge resource for me during this struggle and I hope that my info will be helpful to someone else. I'm currently a patient at UCSF.
Mark
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- September 8, 2016 at 7:34 pm
I know this topic is a bit old now, but the trial is current and so I wanted to post that I am also in this trial. I've had 3 infusions (every 2 weeks). So far the side effects have been itching (without rash) and minor fatigue. I notice that I sleep longer and occasionally take a nap which is rare for me. Daily functions aren't affected too much, but I realize the limitations of the drug when trying to complete Crossfit workouts as I cannot perform like I used too.
I had melanoma 2C on my right sideburn in 2012 and no lymph node involvement. It came back in 2015 just above my right ear as another atypical mole. This time it's 3C as the two sentinal nodes removed showed microscopic melanoma cells. They did a wide local excision and skin graft to cover it up. I tried ippy but only tollerated 3 infusions (10mg/kg dose) before stage 1 collitus set in. Then a few months went by and I noticed what I thought was scar tissue on my right sideburn that was bothersome. It turned out to be a lymph node full of melanoma.
I have a follow-up PET CT in 4 weeks, and I'm going to MD Anderson in Houston next week for a second opinion. I'll try to keep the post updated as this site has been a huge resource for me during this struggle and I hope that my info will be helpful to someone else. I'm currently a patient at UCSF.
Mark
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- September 14, 2016 at 4:23 am
I am thinking of going on this trial soon. Just wondering if anyone has any updated info, side effects or experiences to share. Otherwise, I think my only choice left is Opdvo alone. Thanks! Christal
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- November 2, 2016 at 3:45 pm
Hi Christal,
I've got an update for you. My last scan, done at 8 weeks on this trial, showed the tumor unrecognizable on the CT and a 50% reduction in PET UV. This was after failing ippy. This drug is pretty amazing! A small amount of fatigue is the only side effect I've had. I'm going to stay on it for two more good scans then get off.
I wish you you the best as you fight this monster.
Mark
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- April 26, 2017 at 5:35 am
hi, mark,
how do you feel recently? my mother suffer from mucosal melanoma now. i wonder how many IDO drugs you have everyday? like 100mg ,twice a day?what's the recommanded dosage in the clinical trial? and have you heard of any patient that has severe side effect? thank u very much!!!!
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- November 2, 2016 at 3:45 pm
Hi Christal,
I've got an update for you. My last scan, done at 8 weeks on this trial, showed the tumor unrecognizable on the CT and a 50% reduction in PET UV. This was after failing ippy. This drug is pretty amazing! A small amount of fatigue is the only side effect I've had. I'm going to stay on it for two more good scans then get off.
I wish you you the best as you fight this monster.
Mark
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- November 2, 2016 at 3:45 pm
Hi Christal,
I've got an update for you. My last scan, done at 8 weeks on this trial, showed the tumor unrecognizable on the CT and a 50% reduction in PET UV. This was after failing ippy. This drug is pretty amazing! A small amount of fatigue is the only side effect I've had. I'm going to stay on it for two more good scans then get off.
I wish you you the best as you fight this monster.
Mark
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- November 30, 2016 at 7:13 pm
Hi Christal, My husband was diagnosed in April of this year with mucosal melanoma in his gastrointestinal track. He started this trial in May. At his last scan his primary tumor was no longer detectable, and although he still has the swollen lymph nodes in his groin they believe there is no more melanoma in them. It appears to be fluid and necrotic tissue which makes sense to me, because that is where the "dead" cancer would drain from his primary site.
His only side effects are fatigue and dry mouth. He had a very mild rash early in the trial. He says he is fatigeud but still rides his bike to work on nice days, and goes to crossfit 5 days a week. He's a beast. The dry mouth is very noticable. Sometimes he's hard to understand, but he's crushing this cancer so it feels like a small price to pay. Especially because we have a 6 year old son.
My dad died of cutaneous melanoma in 2011 and I am a hospice RN. It is very exciting (and so very personal) to see the progress in melanoma treatment. My dad did 5 clinical trials in the 9 years after he was diagnosed. I miss him so much, but I am so grateful that he contributed to the science that is keeping my husband/ my sons dad here.
I wish you all the best. I believe we are making history.
"If the history of medicine is told through the stories of doctors, it is becaue their contributions stand in place of the more sustantive heroism of their patients." -Siddhatha Mukherjee
Becky
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- April 26, 2017 at 6:10 am
hello becky,
congratulations on the recovery ! i want to know your husband's dosage of IDO and have you heard of any severe side effect? my mother is also mucosal melanoma, she already tried yervoy+opdivo therapy, but it did't work.so your husband's success is a huge inspriation to us ! look forward to your reply!
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- April 26, 2017 at 6:10 am
hello becky,
congratulations on the recovery ! i want to know your husband's dosage of IDO and have you heard of any severe side effect? my mother is also mucosal melanoma, she already tried yervoy+opdivo therapy, but it did't work.so your husband's success is a huge inspriation to us ! look forward to your reply!
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- November 30, 2016 at 7:13 pm
Hi Christal, My husband was diagnosed in April of this year with mucosal melanoma in his gastrointestinal track. He started this trial in May. At his last scan his primary tumor was no longer detectable, and although he still has the swollen lymph nodes in his groin they believe there is no more melanoma in them. It appears to be fluid and necrotic tissue which makes sense to me, because that is where the "dead" cancer would drain from his primary site.
His only side effects are fatigue and dry mouth. He had a very mild rash early in the trial. He says he is fatigeud but still rides his bike to work on nice days, and goes to crossfit 5 days a week. He's a beast. The dry mouth is very noticable. Sometimes he's hard to understand, but he's crushing this cancer so it feels like a small price to pay. Especially because we have a 6 year old son.
My dad died of cutaneous melanoma in 2011 and I am a hospice RN. It is very exciting (and so very personal) to see the progress in melanoma treatment. My dad did 5 clinical trials in the 9 years after he was diagnosed. I miss him so much, but I am so grateful that he contributed to the science that is keeping my husband/ my sons dad here.
I wish you all the best. I believe we are making history.
"If the history of medicine is told through the stories of doctors, it is becaue their contributions stand in place of the more sustantive heroism of their patients." -Siddhatha Mukherjee
Becky
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- November 30, 2016 at 7:13 pm
Hi Christal, My husband was diagnosed in April of this year with mucosal melanoma in his gastrointestinal track. He started this trial in May. At his last scan his primary tumor was no longer detectable, and although he still has the swollen lymph nodes in his groin they believe there is no more melanoma in them. It appears to be fluid and necrotic tissue which makes sense to me, because that is where the "dead" cancer would drain from his primary site.
His only side effects are fatigue and dry mouth. He had a very mild rash early in the trial. He says he is fatigeud but still rides his bike to work on nice days, and goes to crossfit 5 days a week. He's a beast. The dry mouth is very noticable. Sometimes he's hard to understand, but he's crushing this cancer so it feels like a small price to pay. Especially because we have a 6 year old son.
My dad died of cutaneous melanoma in 2011 and I am a hospice RN. It is very exciting (and so very personal) to see the progress in melanoma treatment. My dad did 5 clinical trials in the 9 years after he was diagnosed. I miss him so much, but I am so grateful that he contributed to the science that is keeping my husband/ my sons dad here.
I wish you all the best. I believe we are making history.
"If the history of medicine is told through the stories of doctors, it is becaue their contributions stand in place of the more sustantive heroism of their patients." -Siddhatha Mukherjee
Becky
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Tagged: cutaneous melanoma
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