› Forums › General Melanoma Community › The Durability of Anti-PD1?
- This topic has 39 replies, 6 voices, and was last updated 9 years, 8 months ago by
LynnLuc.
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- August 15, 2015 at 2:56 am
As many of you know I have been on a sequential trial of ipi and nivo for the last two years. I started the trial with 2 tumors in my abdomen. Those two tumors are now about 50% of what they were at about 2 and 1 cm. I had my last trial infusion of nivo on Wednesday. For the last couple months I've been thinking about what to do at the end of this trial. All along I've been thinking about continuing treatment for at least another 6 months to see if more data becomes available on durability and recurrence of patients who have stopped treatment. I traveled down to Moffitt a few weeks ago and talked with Celeste's favorite Doctor, Dr. Weber. His recommendation for me was to stop treatment. He primarily based this recommendation on his first nivo trial. He said he had 15 patients who either made it to 2 years or made it a significant time before having to stop treatment due to side effects. Of these 15 patients none have had a recurrence. I didn't ask him how long it's been since these patients stopped treatment but I would imagine they are in the 1 to 2 year range now. He also pointed out those patients were on a lesser dosing schedule than I've been on. I asked him why so many patients who respond seem to have a response like me rather than a complete response and he said it appears that our immune system "walls" off the melanoma. His believes that the nivolumab should be given to maximum benefit (achieve NED or achieve stable disease) plus 6 months.
I have my next scan in about a month followed by a CT guided biopsy. In the meantime I guess I'm having a "vacation" from nivo. Based on the biopsy results will determine my next course. If it comes back as necrotic I'll be done with treatment. If it isn't necrotic I'll be looking at resecting the remaining tumors. Dr. Weber said don't be surprised if it's not necrotic.
Anyway, just wanted to share Dr. Weber's thoughts with those in the same boat as me. Coming off the drug cold turkey is not an easy thing to do, especially when you are virtually experiencing zero side effects. If anyone has had any similar conversations with their doctors I'd be curious to hear them. I know Laura's Dr. Hodi has a very different take on this.
Brian
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- August 15, 2015 at 1:51 pm
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
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- August 15, 2015 at 1:51 pm
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
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- August 15, 2015 at 1:51 pm
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
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- August 15, 2015 at 5:29 pm
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
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- August 15, 2015 at 5:29 pm
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
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- August 15, 2015 at 5:29 pm
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
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- August 15, 2015 at 7:48 pm
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!!!
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- August 15, 2015 at 7:48 pm
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!!!
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- August 15, 2015 at 7:48 pm
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!!!
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- August 16, 2015 at 11:14 am
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
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- August 16, 2015 at 11:14 am
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
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- August 16, 2015 at 6:40 pm
Sorry you're having so much discomfort Jubes. The patient you mentioned with only one dose certainly is encouraging. Only a small sampling but it seems more oncologist are in the Dr. Weber camp. A friend of mine who is NED after his 2 years spoke with Dr. Evan Lipson at John Hopkins and he also felt he could stop treatment. I have heard for the few patients who stopped treatment and recurred they responded nicely when they started treatment again.
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- August 16, 2015 at 6:40 pm
Sorry you're having so much discomfort Jubes. The patient you mentioned with only one dose certainly is encouraging. Only a small sampling but it seems more oncologist are in the Dr. Weber camp. A friend of mine who is NED after his 2 years spoke with Dr. Evan Lipson at John Hopkins and he also felt he could stop treatment. I have heard for the few patients who stopped treatment and recurred they responded nicely when they started treatment again.
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- August 16, 2015 at 6:40 pm
Sorry you're having so much discomfort Jubes. The patient you mentioned with only one dose certainly is encouraging. Only a small sampling but it seems more oncologist are in the Dr. Weber camp. A friend of mine who is NED after his 2 years spoke with Dr. Evan Lipson at John Hopkins and he also felt he could stop treatment. I have heard for the few patients who stopped treatment and recurred they responded nicely when they started treatment again.
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- August 16, 2015 at 11:14 am
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
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- August 16, 2015 at 6:22 pm
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
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- August 16, 2015 at 6:22 pm
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
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- August 16, 2015 at 6:22 pm
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
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