PD-1 trial questions.

I am in a trial for Merck 3475 (anti-PD-1) for NSCLC; however, everyone else I have met at my clinic is there for the melanoma arm of the trial. They (and I) have had remarkable success (my tumours have shrunk by over 75% in just six months with no side effects). If it's a Phase I trial everyone gets the drug: I have heard the BMS  anti-PD-1 drug is about to go to Phase III trials, which means half get the drug. My doctor is giving a talk on his results with the Merck drug this Sunday at the Society for Melanoma Research International Congress- you may want to check it out online. Not everyone responds to anti-PD-1, but if they do, the response is amazing. There are some markers on one's tumor (PD-L1) which seem to determine one's chance of response; if your tumor doesn't express it, you won't respond. Yervoy is not the same drug, so I think you can fail yervoy and respond to anti-PD-1. The doctors really need to address that question, however. All I can say is anti-PD-1 is saving my life.

I am in a trial for Merck 3475 (anti-PD-1) for NSCLC; however, everyone else I have met at my clinic is there for the melanoma arm of the trial. They (and I) have had remarkable success (my tumours have shrunk by over 75% in just six months with no side effects). If it's a Phase I trial everyone gets the drug: I have heard the BMS  anti-PD-1 drug is about to go to Phase III trials, which means half get the drug. My doctor is giving a talk on his results with the Merck drug this Sunday at the Society for Melanoma Research International Congress- you may want to check it out online. Not everyone responds to anti-PD-1, but if they do, the response is amazing. There are some markers on one's tumor (PD-L1) which seem to determine one's chance of response; if your tumor doesn't express it, you won't respond. Yervoy is not the same drug, so I think you can fail yervoy and respond to anti-PD-1. The doctors really need to address that question, however. All I can say is anti-PD-1 is saving my life.

I am in a trial for Merck 3475 (anti-PD-1) for NSCLC; however, everyone else I have met at my clinic is there for the melanoma arm of the trial. They (and I) have had remarkable success (my tumours have shrunk by over 75% in just six months with no side effects). If it's a Phase I trial everyone gets the drug: I have heard the BMS  anti-PD-1 drug is about to go to Phase III trials, which means half get the drug. My doctor is giving a talk on his results with the Merck drug this Sunday at the Society for Melanoma Research International Congress- you may want to check it out online. Not everyone responds to anti-PD-1, but if they do, the response is amazing. There are some markers on one's tumor (PD-L1) which seem to determine one's chance of response; if your tumor doesn't express it, you won't respond. Yervoy is not the same drug, so I think you can fail yervoy and respond to anti-PD-1. The doctors really need to address that question, however. All I can say is anti-PD-1 is saving my life.

Susan:

I am at the Society for Melanoma Research meeting and have heard a lot of conversation about PD-1.  The formal talks take place later this weekend, but the general feeling is that PD-1 is looking very positive.  Response rates are higher than Yervoy, at least so far, and side effects are fewer and more manageable.  

It is still early days for this drug, but most melanoma experts I know would absolutely go into a PD-1 trial rather than pursue more chemotherapy.

Tim–MRF

Susan:

I am at the Society for Melanoma Research meeting and have heard a lot of conversation about PD-1.  The formal talks take place later this weekend, but the general feeling is that PD-1 is looking very positive.  Response rates are higher than Yervoy, at least so far, and side effects are fewer and more manageable.  

It is still early days for this drug, but most melanoma experts I know would absolutely go into a PD-1 trial rather than pursue more chemotherapy.

Tim–MRF

Susan:

I am at the Society for Melanoma Research meeting and have heard a lot of conversation about PD-1.  The formal talks take place later this weekend, but the general feeling is that PD-1 is looking very positive.  Response rates are higher than Yervoy, at least so far, and side effects are fewer and more manageable.  

It is still early days for this drug, but most melanoma experts I know would absolutely go into a PD-1 trial rather than pursue more chemotherapy.

Tim–MRF

I am in the maintenace phase of an anti-PD1 trial.  Small mets showed up in my lungs & liver about 6 months or so after completeing interferon. They grew a bit while on Yervoy. I then went right into the trial & have had about 70%+ shrinkage. I have scans next month and am hoping for NED but will be happy with continued improvement. I've had some itchy areas on top of my feet and on my calves but not as bad as I had on Yervoy. Interesting that the previous poster mentioned back pain as I get that between my shoulder blades when standing for long periods or after carrying my golf bag for 14 or 15 holes. I do manage to finish the 18. My onc doesn't think the back pain is related to the drug. The hardest part of the trial is running the maze and pushing the button to get the food pellet. Just kidding. Tell your brother to go for it.    Dan

I am in the maintenace phase of an anti-PD1 trial.  Small mets showed up in my lungs & liver about 6 months or so after completeing interferon. They grew a bit while on Yervoy. I then went right into the trial & have had about 70%+ shrinkage. I have scans next month and am hoping for NED but will be happy with continued improvement. I've had some itchy areas on top of my feet and on my calves but not as bad as I had on Yervoy. Interesting that the previous poster mentioned back pain as I get that between my shoulder blades when standing for long periods or after carrying my golf bag for 14 or 15 holes. I do manage to finish the 18. My onc doesn't think the back pain is related to the drug. The hardest part of the trial is running the maze and pushing the button to get the food pellet. Just kidding. Tell your brother to go for it.    Dan

I am in the maintenace phase of an anti-PD1 trial.  Small mets showed up in my lungs & liver about 6 months or so after completeing interferon. They grew a bit while on Yervoy. I then went right into the trial & have had about 70%+ shrinkage. I have scans next month and am hoping for NED but will be happy with continued improvement. I've had some itchy areas on top of my feet and on my calves but not as bad as I had on Yervoy. Interesting that the previous poster mentioned back pain as I get that between my shoulder blades when standing for long periods or after carrying my golf bag for 14 or 15 holes. I do manage to finish the 18. My onc doesn't think the back pain is related to the drug. The hardest part of the trial is running the maze and pushing the button to get the food pellet. Just kidding. Tell your brother to go for it.    Dan

    I was a participant in the IB trial of MDX-1106/BMS-956886. I went in Stage IV, and have been NED by PET Scan for over 3 years including the 2+ tears since the end of my participation. The side effects were mostly fatigue in my case, and although there were some critical adverse reactions, a great deal has been learned about how to avoid them. The good news is that BMS has just alisted a new trial for patiets who did not respond to Yervoy (NCT01721746). The bad news is that the study does involve randomized allocation to two comparator therapies. I would definatelly pursue access to some form of anti-PD-1.

    I was a participant in the IB trial of MDX-1106/BMS-956886. I went in Stage IV, and have been NED by PET Scan for over 3 years including the 2+ tears since the end of my participation. The side effects were mostly fatigue in my case, and although there were some critical adverse reactions, a great deal has been learned about how to avoid them. The good news is that BMS has just alisted a new trial for patiets who did not respond to Yervoy (NCT01721746). The bad news is that the study does involve randomized allocation to two comparator therapies. I would definatelly pursue access to some form of anti-PD-1.

    I was a participant in the IB trial of MDX-1106/BMS-956886. I went in Stage IV, and have been NED by PET Scan for over 3 years including the 2+ tears since the end of my participation. The side effects were mostly fatigue in my case, and although there were some critical adverse reactions, a great deal has been learned about how to avoid them. The good news is that BMS has just alisted a new trial for patiets who did not respond to Yervoy (NCT01721746). The bad news is that the study does involve randomized allocation to two comparator therapies. I would definatelly pursue access to some form of anti-PD-1.

My husband is  Stage IV with mets in his spleen, vertabrae and after Yervoy a couple of spots on his liver.  The Yervoy did not do anything to stop the progression of the disease. I was told the spots on his liver may or may not really be there as Yervoy may have found "activity" and therefore something showed on the PET he had after treatment. He is now in the Merk trial for PD-1. His first infusion was a week ago Thursday.  He has  been experiencing fevers and night sweats.  I called the doctor on call the other night and he suggested a trip to the local ER as we are 90 miles away from the center where he is receiving the drug.  Nothing remarkable came out of the work up at the ER and the on call doctor suggested it was a reaction to the drug and sent him home.  I called the cancer center the next morning to follow up and spoke to the clinical nurse who asked me how he was doing.  At that time he was fever free.  Again last night he had a fever along with night sweats and I gave him a fever reducer and checked him at intervals to make sure the temp didn't go higher.  Fever is one of the side effects of the drug and I didn't get too much information from the nurse as she wasn't the "regular" clinical nurse for that particular trial.   My question is whether the fever is his immune system actually "fired up", so to speak, or is this a reaction that is potentially a problem.  I did not get the impression from the nurse that they were too concerned. It is so difficult to be far enough away from the centers urgent care facility that it is virtually impossible to do anything but use the local ER with doctors who are not at all familiar with the mechanism of these particular drugs.  Has anyone experienced the fevers and night sweats while on the drug?  Just feel like there are too many unknowns!!

Thanks

My husband is  Stage IV with mets in his spleen, vertabrae and after Yervoy a couple of spots on his liver.  The Yervoy did not do anything to stop the progression of the disease. I was told the spots on his liver may or may not really be there as Yervoy may have found "activity" and therefore something showed on the PET he had after treatment. He is now in the Merk trial for PD-1. His first infusion was a week ago Thursday.  He has  been experiencing fevers and night sweats.  I called the doctor on call the other night and he suggested a trip to the local ER as we are 90 miles away from the center where he is receiving the drug.  Nothing remarkable came out of the work up at the ER and the on call doctor suggested it was a reaction to the drug and sent him home.  I called the cancer center the next morning to follow up and spoke to the clinical nurse who asked me how he was doing.  At that time he was fever free.  Again last night he had a fever along with night sweats and I gave him a fever reducer and checked him at intervals to make sure the temp didn't go higher.  Fever is one of the side effects of the drug and I didn't get too much information from the nurse as she wasn't the "regular" clinical nurse for that particular trial.   My question is whether the fever is his immune system actually "fired up", so to speak, or is this a reaction that is potentially a problem.  I did not get the impression from the nurse that they were too concerned. It is so difficult to be far enough away from the centers urgent care facility that it is virtually impossible to do anything but use the local ER with doctors who are not at all familiar with the mechanism of these particular drugs.  Has anyone experienced the fevers and night sweats while on the drug?  Just feel like there are too many unknowns!!

Thanks

My husband is  Stage IV with mets in his spleen, vertabrae and after Yervoy a couple of spots on his liver.  The Yervoy did not do anything to stop the progression of the disease. I was told the spots on his liver may or may not really be there as Yervoy may have found "activity" and therefore something showed on the PET he had after treatment. He is now in the Merk trial for PD-1. His first infusion was a week ago Thursday.  He has  been experiencing fevers and night sweats.  I called the doctor on call the other night and he suggested a trip to the local ER as we are 90 miles away from the center where he is receiving the drug.  Nothing remarkable came out of the work up at the ER and the on call doctor suggested it was a reaction to the drug and sent him home.  I called the cancer center the next morning to follow up and spoke to the clinical nurse who asked me how he was doing.  At that time he was fever free.  Again last night he had a fever along with night sweats and I gave him a fever reducer and checked him at intervals to make sure the temp didn't go higher.  Fever is one of the side effects of the drug and I didn't get too much information from the nurse as she wasn't the "regular" clinical nurse for that particular trial.   My question is whether the fever is his immune system actually "fired up", so to speak, or is this a reaction that is potentially a problem.  I did not get the impression from the nurse that they were too concerned. It is so difficult to be far enough away from the centers urgent care facility that it is virtually impossible to do anything but use the local ER with doctors who are not at all familiar with the mechanism of these particular drugs.  Has anyone experienced the fevers and night sweats while on the drug?  Just feel like there are too many unknowns!!

Thanks

The information at the Congress isn't any newer than the ASCO reports on PD1.  It is about 30% response rate vs. 15% for IPI.  supposed to have less side effects.  Merck and BMS seem to have the best ones so far, others are newer.

The information at the Congress isn't any newer than the ASCO reports on PD1.  It is about 30% response rate vs. 15% for IPI.  supposed to have less side effects.  Merck and BMS seem to have the best ones so far, others are newer.

The information at the Congress isn't any newer than the ASCO reports on PD1.  It is about 30% response rate vs. 15% for IPI.  supposed to have less side effects.  Merck and BMS seem to have the best ones so far, others are newer.