› Forums › General Melanoma Community › Is this a bad idea?
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stotesbery.
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- September 14, 2016 at 2:25 am
I have Stage lV metastatic melanoma with latest scan showing one subcutaneous nodule and another tumor on my right glut max muscle. Is it a bad idea to wait seven weeks to get into a trial for Opdivo plus epacadostat (IDO inhibitor)? Or should I just start Opdivo alone? I progressed from stage lll to lV while on Ipi and have to wait seven more weeks for it to be out of my system. The trial is not randomized so I know that I will get the drugs. I didn't choose watch and wait after surgery and radiation for stage lllC and now I regret it. I feel like no matter what I do it ends up being the "wrong" choice and now I'm running out of choices….. Christal
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- September 14, 2016 at 3:43 pm
Hi Christal,
You could maybe look at the results for pembrolizumab plus epacadostat compared to results for Opdivo alone. If you feel the better results from pd1 plus IDO warrant a minor wait then its probably the one to go for.
I'm sorry you progressed on IPI , but at least you are not wondering what would have happened if you hadn 't opted for treatment.. We are all part of a learning curve with the drugs … Which is best to use for each individual, when is best to intervene, and the best order to try different treatments.
The general rule seems to be that combos have better response rates than single agents..and I would be tempted to have a side effect holiday, get some great nutrition and do some of the stuff you enjoy then go for the trial. I can see that you might want to go for treatment sooner rather than later…over what period did the new mets appear ?
Please don't beat yourself up over earlier decisions..we all do what we think best at the time and we haven't got cristal balls to see the future. Got to work from where you are now and try and steer the best course into the future. Crossing my fingers all goes well for you with future treatment. Am in a similar boat sat on the edge of stage 3 with a scan at the end of the month to check for progression… chose to do adj. Treatment in a trial of keytruda…
Best of luck,
Deb
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- September 21, 2016 at 7:34 pm
The mets appeared within three months of starting Ipi. I had a lump on my back one month after starting Ipi but an excisional biopsy showed no melanoma. It grew back and two months later tested positive for melanoma. So they then did a PET/CT and found a suspicious lesion on my right gluteus maximus muscle. Hope your scan and trial with Keytruda go well! I really wanted to do Opdivo or Keytruda but couldn't find a trial that would work for me.
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- September 21, 2016 at 7:34 pm
The mets appeared within three months of starting Ipi. I had a lump on my back one month after starting Ipi but an excisional biopsy showed no melanoma. It grew back and two months later tested positive for melanoma. So they then did a PET/CT and found a suspicious lesion on my right gluteus maximus muscle. Hope your scan and trial with Keytruda go well! I really wanted to do Opdivo or Keytruda but couldn't find a trial that would work for me.
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- September 21, 2016 at 7:34 pm
The mets appeared within three months of starting Ipi. I had a lump on my back one month after starting Ipi but an excisional biopsy showed no melanoma. It grew back and two months later tested positive for melanoma. So they then did a PET/CT and found a suspicious lesion on my right gluteus maximus muscle. Hope your scan and trial with Keytruda go well! I really wanted to do Opdivo or Keytruda but couldn't find a trial that would work for me.
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- September 14, 2016 at 3:43 pm
Hi Christal,
You could maybe look at the results for pembrolizumab plus epacadostat compared to results for Opdivo alone. If you feel the better results from pd1 plus IDO warrant a minor wait then its probably the one to go for.
I'm sorry you progressed on IPI , but at least you are not wondering what would have happened if you hadn 't opted for treatment.. We are all part of a learning curve with the drugs … Which is best to use for each individual, when is best to intervene, and the best order to try different treatments.
The general rule seems to be that combos have better response rates than single agents..and I would be tempted to have a side effect holiday, get some great nutrition and do some of the stuff you enjoy then go for the trial. I can see that you might want to go for treatment sooner rather than later…over what period did the new mets appear ?
Please don't beat yourself up over earlier decisions..we all do what we think best at the time and we haven't got cristal balls to see the future. Got to work from where you are now and try and steer the best course into the future. Crossing my fingers all goes well for you with future treatment. Am in a similar boat sat on the edge of stage 3 with a scan at the end of the month to check for progression… chose to do adj. Treatment in a trial of keytruda…
Best of luck,
Deb
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- September 14, 2016 at 3:43 pm
Hi Christal,
You could maybe look at the results for pembrolizumab plus epacadostat compared to results for Opdivo alone. If you feel the better results from pd1 plus IDO warrant a minor wait then its probably the one to go for.
I'm sorry you progressed on IPI , but at least you are not wondering what would have happened if you hadn 't opted for treatment.. We are all part of a learning curve with the drugs … Which is best to use for each individual, when is best to intervene, and the best order to try different treatments.
The general rule seems to be that combos have better response rates than single agents..and I would be tempted to have a side effect holiday, get some great nutrition and do some of the stuff you enjoy then go for the trial. I can see that you might want to go for treatment sooner rather than later…over what period did the new mets appear ?
Please don't beat yourself up over earlier decisions..we all do what we think best at the time and we haven't got cristal balls to see the future. Got to work from where you are now and try and steer the best course into the future. Crossing my fingers all goes well for you with future treatment. Am in a similar boat sat on the edge of stage 3 with a scan at the end of the month to check for progression… chose to do adj. Treatment in a trial of keytruda…
Best of luck,
Deb
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- September 15, 2016 at 1:30 am
Christal,
Probably not many responses to this question because you've asked a tough one. In all honesty I'm not sure what I'd do. What do your doctors say? I'm sorry but I can't remember your exact circumstances and how aggressive your mel has been reacting. That would factor in to my decision. I'm assuming for the epacadostat trial you have to be PD-1 naive. Are there any trials available to you that allow prior PD-1 treatment? If so maybe you could do the Opdivo alone and if things progress enroll in that trial.
Brian
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- September 15, 2016 at 1:30 am
Christal,
Probably not many responses to this question because you've asked a tough one. In all honesty I'm not sure what I'd do. What do your doctors say? I'm sorry but I can't remember your exact circumstances and how aggressive your mel has been reacting. That would factor in to my decision. I'm assuming for the epacadostat trial you have to be PD-1 naive. Are there any trials available to you that allow prior PD-1 treatment? If so maybe you could do the Opdivo alone and if things progress enroll in that trial.
Brian
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- September 15, 2016 at 1:30 am
Christal,
Probably not many responses to this question because you've asked a tough one. In all honesty I'm not sure what I'd do. What do your doctors say? I'm sorry but I can't remember your exact circumstances and how aggressive your mel has been reacting. That would factor in to my decision. I'm assuming for the epacadostat trial you have to be PD-1 naive. Are there any trials available to you that allow prior PD-1 treatment? If so maybe you could do the Opdivo alone and if things progress enroll in that trial.
Brian
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- September 20, 2016 at 9:05 pm
Hi Christal,
I am stage three with a 1-2 cm lymph node mets. The mets occured while on Ippi. I feel your pain of wondering if I did the right thing by opting for Ippi over a complete lymph node disection. I started the Nivo/Epacadastat trial about 6 weeks ago. I won't have my new scan for two more weeks, but I can feel my tumor under the skin and have not noticed any shrinkage–nor any growth.
The trial drugs are much easier to handle than the ippi was as far as side effects. All I feel is less endurance to stressful or physically demanding days.
I'm a patient at UCSF which has a great melanoma clinic, however, I went to MD Anderson last week for a second opinion. If you have not yet done this, I highly recommend it. Each facility has access to different clinical trials and different options. It was eye opening. The doctor there approved of what I was doing but gave me very specific opinions on what he would recommend based on the next scan. He even offered to call my doctor to talk about clinical trial opions together to find what seemed to be the best fit between the two facilities.
I wish you the best!
Mark
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- September 20, 2016 at 9:05 pm
Hi Christal,
I am stage three with a 1-2 cm lymph node mets. The mets occured while on Ippi. I feel your pain of wondering if I did the right thing by opting for Ippi over a complete lymph node disection. I started the Nivo/Epacadastat trial about 6 weeks ago. I won't have my new scan for two more weeks, but I can feel my tumor under the skin and have not noticed any shrinkage–nor any growth.
The trial drugs are much easier to handle than the ippi was as far as side effects. All I feel is less endurance to stressful or physically demanding days.
I'm a patient at UCSF which has a great melanoma clinic, however, I went to MD Anderson last week for a second opinion. If you have not yet done this, I highly recommend it. Each facility has access to different clinical trials and different options. It was eye opening. The doctor there approved of what I was doing but gave me very specific opinions on what he would recommend based on the next scan. He even offered to call my doctor to talk about clinical trial opions together to find what seemed to be the best fit between the two facilities.
I wish you the best!
Mark
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- September 20, 2016 at 9:05 pm
Hi Christal,
I am stage three with a 1-2 cm lymph node mets. The mets occured while on Ippi. I feel your pain of wondering if I did the right thing by opting for Ippi over a complete lymph node disection. I started the Nivo/Epacadastat trial about 6 weeks ago. I won't have my new scan for two more weeks, but I can feel my tumor under the skin and have not noticed any shrinkage–nor any growth.
The trial drugs are much easier to handle than the ippi was as far as side effects. All I feel is less endurance to stressful or physically demanding days.
I'm a patient at UCSF which has a great melanoma clinic, however, I went to MD Anderson last week for a second opinion. If you have not yet done this, I highly recommend it. Each facility has access to different clinical trials and different options. It was eye opening. The doctor there approved of what I was doing but gave me very specific opinions on what he would recommend based on the next scan. He even offered to call my doctor to talk about clinical trial opions together to find what seemed to be the best fit between the two facilities.
I wish you the best!
Mark
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Tagged: cutaneous melanoma
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