The Durability of Anti-PD1?

Hi Brian!   I'm under the care of Dr. Michael Atkins at the Lombardi Cancer Center in Georgetown.  I was treated with Keytruda for a year.  My last PET/Brain MRI (early June) showed NED. Dr. Atkins asked me if I wanted to stay on Keytruda or discontinue use until when or if there was progression. I reacted with, "Stay on it for a while longer".  It was a safety net and I really had such minor side effects. Then he explained his thoughts.  He said a year should be enough.  Also, there were some cases where some patients stayed on a while longer and regretted it due to late adverse side effects. I had noticed that I was beginning to get joint aches, so I took his recommendation and stopped treatment.  It sounds as though he would agree with Dr. Weber.  Both are on the MRF Board.  My 6 week blood work looked good.  Scans/Brain MRI on September 8th.  I feel about the same as I did before although I have more energy and not as many aches and pains.

Good luck to you!

Terrie 

Hi Brian!   I'm under the care of Dr. Michael Atkins at the Lombardi Cancer Center in Georgetown.  I was treated with Keytruda for a year.  My last PET/Brain MRI (early June) showed NED. Dr. Atkins asked me if I wanted to stay on Keytruda or discontinue use until when or if there was progression. I reacted with, "Stay on it for a while longer".  It was a safety net and I really had such minor side effects. Then he explained his thoughts.  He said a year should be enough.  Also, there were some cases where some patients stayed on a while longer and regretted it due to late adverse side effects. I had noticed that I was beginning to get joint aches, so I took his recommendation and stopped treatment.  It sounds as though he would agree with Dr. Weber.  Both are on the MRF Board.  My 6 week blood work looked good.  Scans/Brain MRI on September 8th.  I feel about the same as I did before although I have more energy and not as many aches and pains.

Good luck to you!

Terrie 

Hi Brian!   I'm under the care of Dr. Michael Atkins at the Lombardi Cancer Center in Georgetown.  I was treated with Keytruda for a year.  My last PET/Brain MRI (early June) showed NED. Dr. Atkins asked me if I wanted to stay on Keytruda or discontinue use until when or if there was progression. I reacted with, "Stay on it for a while longer".  It was a safety net and I really had such minor side effects. Then he explained his thoughts.  He said a year should be enough.  Also, there were some cases where some patients stayed on a while longer and regretted it due to late adverse side effects. I had noticed that I was beginning to get joint aches, so I took his recommendation and stopped treatment.  It sounds as though he would agree with Dr. Weber.  Both are on the MRF Board.  My 6 week blood work looked good.  Scans/Brain MRI on September 8th.  I feel about the same as I did before although I have more energy and not as many aches and pains.

Good luck to you!

Terrie 

Hi Brian,

im not in a trial, but have essentially done a sequential ipi pembro treatment program. I'm now almost 6 months into pembro and am now NED- can't find a thing! Rock star doc and I are talking about doing another 6 months. Rock Star Doc thinks 2 years is over kill,  But to be honest, I've had so few difficulties with Pembro, I'd probably be ok with going the full 2 years. Yes let's over kill Mel! But if I develop problems with it, then yes, I'd stop. Without good mature durability stats, it's really just a guess. So go with your gut!

shalom,

Julie

Hi Brian,

im not in a trial, but have essentially done a sequential ipi pembro treatment program. I'm now almost 6 months into pembro and am now NED- can't find a thing! Rock star doc and I are talking about doing another 6 months. Rock Star Doc thinks 2 years is over kill,  But to be honest, I've had so few difficulties with Pembro, I'd probably be ok with going the full 2 years. Yes let's over kill Mel! But if I develop problems with it, then yes, I'd stop. Without good mature durability stats, it's really just a guess. So go with your gut!

shalom,

Julie

Hi Brian,

im not in a trial, but have essentially done a sequential ipi pembro treatment program. I'm now almost 6 months into pembro and am now NED- can't find a thing! Rock star doc and I are talking about doing another 6 months. Rock Star Doc thinks 2 years is over kill,  But to be honest, I've had so few difficulties with Pembro, I'd probably be ok with going the full 2 years. Yes let's over kill Mel! But if I develop problems with it, then yes, I'd stop. Without good mature durability stats, it's really just a guess. So go with your gut!

shalom,

Julie

Hey Brian! I have been asking the same questions, especially since my last scan last week. All tumors are gone except the one in a mesenteric lymph node. Doc seems to think there may not even be any cancer left there, since the node is only a bit above normal node size. I've been on nivo alone since April, and I know the plan for now is to continue. But my doc has mentioned there are questions as to whether or not two years are necessary. I'm certain I'll do a full year at least… But then what? And even if I do complete two years… Then what? I feel like I have a safety blanket, and often think about the durability once treatments cease. Becoming comfortable with the great unknown is something I'm struggling to accept. I guess I'll cross that bridge when I come to it! Best of luck to you!!!

Hey Brian! I have been asking the same questions, especially since my last scan last week. All tumors are gone except the one in a mesenteric lymph node. Doc seems to think there may not even be any cancer left there, since the node is only a bit above normal node size. I've been on nivo alone since April, and I know the plan for now is to continue. But my doc has mentioned there are questions as to whether or not two years are necessary. I'm certain I'll do a full year at least… But then what? And even if I do complete two years… Then what? I feel like I have a safety blanket, and often think about the durability once treatments cease. Becoming comfortable with the great unknown is something I'm struggling to accept. I guess I'll cross that bridge when I come to it! Best of luck to you!!!

Hey Brian! I have been asking the same questions, especially since my last scan last week. All tumors are gone except the one in a mesenteric lymph node. Doc seems to think there may not even be any cancer left there, since the node is only a bit above normal node size. I've been on nivo alone since April, and I know the plan for now is to continue. But my doc has mentioned there are questions as to whether or not two years are necessary. I'm certain I'll do a full year at least… But then what? And even if I do complete two years… Then what? I feel like I have a safety blanket, and often think about the durability once treatments cease. Becoming comfortable with the great unknown is something I'm struggling to accept. I guess I'll cross that bridge when I come to it! Best of luck to you!!!

Hi Brian 

this is a really interesting topic for me. I have been on keytruda for nearly a year. Since March I have had terrible pain mainly in my torso but through my neck and upper limbs as well. My Drs asked around at asco this year and they can't find anyone with this same side effect. I also have a rash and a bit fatigued at times but nothing that can't be tolerated. My tumour has shrunk but they are now not sure if the 3 cm left in my lung is even cancer or just immune activity on the scan. I have been on 25 mg prednisone and weaning down to 7.5 mg to manage my pain as it is hard to move at all sometimes. Now I am borderline osteoporosis possibly partly from the steroids. Last visit to my doc he said we should think about stopping keytruda and just monitoring after that. He said he had one patient who had a single dose and had to stop due to side effects. Three years later his disease has not progressed. So we decided to make my one year anniversary of starting keytruda on sept 18 my last Pembro and scan on that day and then 12 weeks later. I see him tomorrow but I am feeling so poorly I think I may just stop now. Either that or I will need to up the steroids to be able to get out of bed. I am really hoping the work is done and that the work keeps going from keytruda but that the side effects abate when it washes out of  my system!! I sure hope dr weber is right and my 'wall' is in place.  It was also heartening that celeste said her arthralias improved after stopping pd1 

Hi Brian 

this is a really interesting topic for me. I have been on keytruda for nearly a year. Since March I have had terrible pain mainly in my torso but through my neck and upper limbs as well. My Drs asked around at asco this year and they can't find anyone with this same side effect. I also have a rash and a bit fatigued at times but nothing that can't be tolerated. My tumour has shrunk but they are now not sure if the 3 cm left in my lung is even cancer or just immune activity on the scan. I have been on 25 mg prednisone and weaning down to 7.5 mg to manage my pain as it is hard to move at all sometimes. Now I am borderline osteoporosis possibly partly from the steroids. Last visit to my doc he said we should think about stopping keytruda and just monitoring after that. He said he had one patient who had a single dose and had to stop due to side effects. Three years later his disease has not progressed. So we decided to make my one year anniversary of starting keytruda on sept 18 my last Pembro and scan on that day and then 12 weeks later. I see him tomorrow but I am feeling so poorly I think I may just stop now. Either that or I will need to up the steroids to be able to get out of bed. I am really hoping the work is done and that the work keeps going from keytruda but that the side effects abate when it washes out of  my system!! I sure hope dr weber is right and my 'wall' is in place.  It was also heartening that celeste said her arthralias improved after stopping pd1 

Hi Brian 

this is a really interesting topic for me. I have been on keytruda for nearly a year. Since March I have had terrible pain mainly in my torso but through my neck and upper limbs as well. My Drs asked around at asco this year and they can't find anyone with this same side effect. I also have a rash and a bit fatigued at times but nothing that can't be tolerated. My tumour has shrunk but they are now not sure if the 3 cm left in my lung is even cancer or just immune activity on the scan. I have been on 25 mg prednisone and weaning down to 7.5 mg to manage my pain as it is hard to move at all sometimes. Now I am borderline osteoporosis possibly partly from the steroids. Last visit to my doc he said we should think about stopping keytruda and just monitoring after that. He said he had one patient who had a single dose and had to stop due to side effects. Three years later his disease has not progressed. So we decided to make my one year anniversary of starting keytruda on sept 18 my last Pembro and scan on that day and then 12 weeks later. I see him tomorrow but I am feeling so poorly I think I may just stop now. Either that or I will need to up the steroids to be able to get out of bed. I am really hoping the work is done and that the work keeps going from keytruda but that the side effects abate when it washes out of  my system!! I sure hope dr weber is right and my 'wall' is in place.  It was also heartening that celeste said her arthralias improved after stopping pd1 

I am from the first trial…patient # 6 and did MDX 1106, aka BMS-93655, aka Nivolumab, aka Opdivo!!….from Moffitt and I have Dr. Weber.  My 5 year check up/scans are on Sept 1&2…Been NED for 5 years since starting the trial in 2010…what more could a Stage 4 ask!!! Lynn

I am from the first trial…patient # 6 and did MDX 1106, aka BMS-93655, aka Nivolumab, aka Opdivo!!….from Moffitt and I have Dr. Weber.  My 5 year check up/scans are on Sept 1&2…Been NED for 5 years since starting the trial in 2010…what more could a Stage 4 ask!!! Lynn

I am from the first trial…patient # 6 and did MDX 1106, aka BMS-93655, aka Nivolumab, aka Opdivo!!….from Moffitt and I have Dr. Weber.  My 5 year check up/scans are on Sept 1&2…Been NED for 5 years since starting the trial in 2010…what more could a Stage 4 ask!!! Lynn