› Forums › General Melanoma Community › peri-lung nodes
- This topic has 18 replies, 4 voices, and was last updated 10 years, 5 months ago by JerryfromFauq.
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- December 20, 2013 at 3:18 pm
I'm anxiously waiting for call back from my onc doc about a node that lit up on scan earlier this week…she didn't know a whole lot when she phoned last night at 10 pm…no final report as yet, but at least one node had lit up; she said it's likely in drainage area from lung mass removed by VATS early Sept….
is the standard in these cases (well, I really don't know the case as yet I guess!) resection if at all possible, followed by radiation? I'm not sure a lit up node qualifies me for the ipi/nivo trial…but would definately like this thing (hopefully it's only one) removed…I so so so appreciate everyone's input and support…thanks very much
SB
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- December 21, 2013 at 4:12 am
SB,
I'll pray for a false positive for you. Has anyone mentioned a biopsy before recommending a treatment option?
A choice between cutting it out and Ipi/Nivo trial is a tough one. I'd probably lean toward a Ipi/Nivo trial if it were me, especially if it's been a short time since your last occurance. You may have a tough time getting into a nivo/ipi trial with just one node. In my particular trial it required at least two mets, one they used to biopsy before and during the trial and one they use to measure the effectiveness of the trial.
If a Ipi/Nivo trial isn't available then I guess the most logical choice would be between Ipi/radiation and surgery. There's been some information lately about the synergistic effects of Ipi and radiation so that may be a viable option as well.
I'd be curious what POW and other think on this. I know the conventional theory has always been to cut it out whenever possible but does the conventional theory need to be modified with the advent of some of these new treatments?
Best of luck with your decision SB.
Brian
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- December 21, 2013 at 4:12 am
SB,
I'll pray for a false positive for you. Has anyone mentioned a biopsy before recommending a treatment option?
A choice between cutting it out and Ipi/Nivo trial is a tough one. I'd probably lean toward a Ipi/Nivo trial if it were me, especially if it's been a short time since your last occurance. You may have a tough time getting into a nivo/ipi trial with just one node. In my particular trial it required at least two mets, one they used to biopsy before and during the trial and one they use to measure the effectiveness of the trial.
If a Ipi/Nivo trial isn't available then I guess the most logical choice would be between Ipi/radiation and surgery. There's been some information lately about the synergistic effects of Ipi and radiation so that may be a viable option as well.
I'd be curious what POW and other think on this. I know the conventional theory has always been to cut it out whenever possible but does the conventional theory need to be modified with the advent of some of these new treatments?
Best of luck with your decision SB.
Brian
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- December 21, 2013 at 2:00 pm
Brian, my "take" on surgery is pretty simple. To date, surgery is the ONLY treatment that is 100% effective at killing tumors in every individual. Therefore, if surgery is possible and safe, that should be the first choice. To me, it makes no sense to leave one or a few tumors in place in the hopes that some treatment or trial will work. Why do that?
Unfortunately, melanoma being what it is, even with surgery there is a possibility that the melanoma will be back some day and be inoperable. That is when I would go for targeted radiation, systemic treatment and/or a clinical trial.
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- December 21, 2013 at 6:30 pm
thank you both POW and Brian…I am a little surprised the trial was offered in lieu of 'it' being one node…have a few more questions of the mel doc and a little more time to decide…well, by Monday afternoon! I'll see IF surgery is doable with little invasion too…see the surgeon noon on Monday…same one who removed the lung met in early Sept.
again thank you so much for your thoughts and insight…
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- December 21, 2013 at 6:30 pm
thank you both POW and Brian…I am a little surprised the trial was offered in lieu of 'it' being one node…have a few more questions of the mel doc and a little more time to decide…well, by Monday afternoon! I'll see IF surgery is doable with little invasion too…see the surgeon noon on Monday…same one who removed the lung met in early Sept.
again thank you so much for your thoughts and insight…
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- December 21, 2013 at 6:30 pm
thank you both POW and Brian…I am a little surprised the trial was offered in lieu of 'it' being one node…have a few more questions of the mel doc and a little more time to decide…well, by Monday afternoon! I'll see IF surgery is doable with little invasion too…see the surgeon noon on Monday…same one who removed the lung met in early Sept.
again thank you so much for your thoughts and insight…
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- December 22, 2013 at 6:03 am
Pat, what you say does make sense but I just don’t think it’s as clear cut (no pun intended) decision as it use to be with the advancement of treatments. Here’s just a few thoughts I might consider if I were in SB’s shoes.
- I know some stage IVers go years between surgeries and a lucky few live quite a while with this strategy but I don’t think there’s many that make it past the 10 year mark without systemic treatment. I believe this is SB’s first scan since the VATs surgery so I’m assuming at around 3 – 6 months is the first reoccurrence. Who knows if that’s any indication for the timing of the next recurrence but it’s something to consider. If I had gone 2 or 3+ years since my VATs then I would definitely be more inclined to cut it out again.
- Also based on the quick recurrence if I had a chance to get into a IPI/Nivo trial now I might take it because if I did reoccur in 3 – 6 months who knows if a IPI/Nivo trial would be available then. I know IPI/Nivo isn’t the only show in town but it’s hard to argue that it’s not the best show in town right now. Unless something dramatic occurs we are probably still looking at 12 – 18 months before Nivo is FDA approved so if I reoccurred before then I would be rolling the dice that I could get into a Nivo trial.
- One tough thing about being stage IV NED is that you really don’t have any viable treatment options even though it is almost certain to come back. Like you said surgery is great for getting 100% of the tumor but not 100% of the melanoma cells. With such a low tumor burden one option I would ask my onc would be to get an ipi infusion immediately, 3 weeks later another ipi infusion and then rescan. If things are stable or improving I would go with 2 more ipi infusion and then scan again. After each scan if the node is progressing, which is definitely a possibility with the delayed response of ipi, you could go with the surgery at that point but at least you have the possibility of getting some benefit of ipi that you wouldn’t get to have if you go with surgery first.
Those are just a few things I would consider. Like any melanoma treatment option the best one you personally believe gives you the best chance. Wish you the best SB and good luck on Monday with your appointments.
Brian
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- December 22, 2013 at 6:03 am
Pat, what you say does make sense but I just don’t think it’s as clear cut (no pun intended) decision as it use to be with the advancement of treatments. Here’s just a few thoughts I might consider if I were in SB’s shoes.
- I know some stage IVers go years between surgeries and a lucky few live quite a while with this strategy but I don’t think there’s many that make it past the 10 year mark without systemic treatment. I believe this is SB’s first scan since the VATs surgery so I’m assuming at around 3 – 6 months is the first reoccurrence. Who knows if that’s any indication for the timing of the next recurrence but it’s something to consider. If I had gone 2 or 3+ years since my VATs then I would definitely be more inclined to cut it out again.
- Also based on the quick recurrence if I had a chance to get into a IPI/Nivo trial now I might take it because if I did reoccur in 3 – 6 months who knows if a IPI/Nivo trial would be available then. I know IPI/Nivo isn’t the only show in town but it’s hard to argue that it’s not the best show in town right now. Unless something dramatic occurs we are probably still looking at 12 – 18 months before Nivo is FDA approved so if I reoccurred before then I would be rolling the dice that I could get into a Nivo trial.
- One tough thing about being stage IV NED is that you really don’t have any viable treatment options even though it is almost certain to come back. Like you said surgery is great for getting 100% of the tumor but not 100% of the melanoma cells. With such a low tumor burden one option I would ask my onc would be to get an ipi infusion immediately, 3 weeks later another ipi infusion and then rescan. If things are stable or improving I would go with 2 more ipi infusion and then scan again. After each scan if the node is progressing, which is definitely a possibility with the delayed response of ipi, you could go with the surgery at that point but at least you have the possibility of getting some benefit of ipi that you wouldn’t get to have if you go with surgery first.
Those are just a few things I would consider. Like any melanoma treatment option the best one you personally believe gives you the best chance. Wish you the best SB and good luck on Monday with your appointments.
Brian
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- December 22, 2013 at 6:03 am
Pat, what you say does make sense but I just don’t think it’s as clear cut (no pun intended) decision as it use to be with the advancement of treatments. Here’s just a few thoughts I might consider if I were in SB’s shoes.
- I know some stage IVers go years between surgeries and a lucky few live quite a while with this strategy but I don’t think there’s many that make it past the 10 year mark without systemic treatment. I believe this is SB’s first scan since the VATs surgery so I’m assuming at around 3 – 6 months is the first reoccurrence. Who knows if that’s any indication for the timing of the next recurrence but it’s something to consider. If I had gone 2 or 3+ years since my VATs then I would definitely be more inclined to cut it out again.
- Also based on the quick recurrence if I had a chance to get into a IPI/Nivo trial now I might take it because if I did reoccur in 3 – 6 months who knows if a IPI/Nivo trial would be available then. I know IPI/Nivo isn’t the only show in town but it’s hard to argue that it’s not the best show in town right now. Unless something dramatic occurs we are probably still looking at 12 – 18 months before Nivo is FDA approved so if I reoccurred before then I would be rolling the dice that I could get into a Nivo trial.
- One tough thing about being stage IV NED is that you really don’t have any viable treatment options even though it is almost certain to come back. Like you said surgery is great for getting 100% of the tumor but not 100% of the melanoma cells. With such a low tumor burden one option I would ask my onc would be to get an ipi infusion immediately, 3 weeks later another ipi infusion and then rescan. If things are stable or improving I would go with 2 more ipi infusion and then scan again. After each scan if the node is progressing, which is definitely a possibility with the delayed response of ipi, you could go with the surgery at that point but at least you have the possibility of getting some benefit of ipi that you wouldn’t get to have if you go with surgery first.
Those are just a few things I would consider. Like any melanoma treatment option the best one you personally believe gives you the best chance. Wish you the best SB and good luck on Monday with your appointments.
Brian
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- December 22, 2013 at 1:50 pm
Brain, you bring up some very good points here. You remind me of the old agage: "All generalizations are useless, including this one." Perhaps surgery is not ALWAYS the best recourse.
The original poster did not say anything about his/her original pathology report (especially mitotic index), original staging, treatment history, or BRAF status. All of those would definitely factor into the treatment decision now.
However, the fact that this recurrence (if it is a recurrence– a PET scan is not enough to determine that) happened so quickly after the first surgery could indicate an aggressive tumor. In that case, if she has an opportunity to get into an Ipi/Nivo trial it would certainly be worth considering.
So I revise my original statement to be, "Surgery, where possible and safe, is ALMOST always my first choice."
Thanks for your thoughtful post.
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- December 22, 2013 at 1:50 pm
Brain, you bring up some very good points here. You remind me of the old agage: "All generalizations are useless, including this one." Perhaps surgery is not ALWAYS the best recourse.
The original poster did not say anything about his/her original pathology report (especially mitotic index), original staging, treatment history, or BRAF status. All of those would definitely factor into the treatment decision now.
However, the fact that this recurrence (if it is a recurrence– a PET scan is not enough to determine that) happened so quickly after the first surgery could indicate an aggressive tumor. In that case, if she has an opportunity to get into an Ipi/Nivo trial it would certainly be worth considering.
So I revise my original statement to be, "Surgery, where possible and safe, is ALMOST always my first choice."
Thanks for your thoughtful post.
-
- December 22, 2013 at 1:50 pm
Brain, you bring up some very good points here. You remind me of the old agage: "All generalizations are useless, including this one." Perhaps surgery is not ALWAYS the best recourse.
The original poster did not say anything about his/her original pathology report (especially mitotic index), original staging, treatment history, or BRAF status. All of those would definitely factor into the treatment decision now.
However, the fact that this recurrence (if it is a recurrence– a PET scan is not enough to determine that) happened so quickly after the first surgery could indicate an aggressive tumor. In that case, if she has an opportunity to get into an Ipi/Nivo trial it would certainly be worth considering.
So I revise my original statement to be, "Surgery, where possible and safe, is ALMOST always my first choice."
Thanks for your thoughtful post.
-
- December 21, 2013 at 2:00 pm
Brian, my "take" on surgery is pretty simple. To date, surgery is the ONLY treatment that is 100% effective at killing tumors in every individual. Therefore, if surgery is possible and safe, that should be the first choice. To me, it makes no sense to leave one or a few tumors in place in the hopes that some treatment or trial will work. Why do that?
Unfortunately, melanoma being what it is, even with surgery there is a possibility that the melanoma will be back some day and be inoperable. That is when I would go for targeted radiation, systemic treatment and/or a clinical trial.
-
- December 21, 2013 at 2:00 pm
Brian, my "take" on surgery is pretty simple. To date, surgery is the ONLY treatment that is 100% effective at killing tumors in every individual. Therefore, if surgery is possible and safe, that should be the first choice. To me, it makes no sense to leave one or a few tumors in place in the hopes that some treatment or trial will work. Why do that?
Unfortunately, melanoma being what it is, even with surgery there is a possibility that the melanoma will be back some day and be inoperable. That is when I would go for targeted radiation, systemic treatment and/or a clinical trial.
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- December 21, 2013 at 4:12 am
SB,
I'll pray for a false positive for you. Has anyone mentioned a biopsy before recommending a treatment option?
A choice between cutting it out and Ipi/Nivo trial is a tough one. I'd probably lean toward a Ipi/Nivo trial if it were me, especially if it's been a short time since your last occurance. You may have a tough time getting into a nivo/ipi trial with just one node. In my particular trial it required at least two mets, one they used to biopsy before and during the trial and one they use to measure the effectiveness of the trial.
If a Ipi/Nivo trial isn't available then I guess the most logical choice would be between Ipi/radiation and surgery. There's been some information lately about the synergistic effects of Ipi and radiation so that may be a viable option as well.
I'd be curious what POW and other think on this. I know the conventional theory has always been to cut it out whenever possible but does the conventional theory need to be modified with the advent of some of these new treatments?
Best of luck with your decision SB.
Brian
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- December 28, 2013 at 7:35 am
One thing never mentioned here is that It was most likely a PET scan. PET scans are notorious for false positives And false negatives. (I've had many of both.)
I believe that if one can get in to a PD-1 trial, for fairly Systemic treatment, they should. This is the current leader in trials and expected to be much better than IPI (Yervoy) in the long run. PD-1 treatments, while having the possibility of long term negative effects seem to have less such problems than Ipi may.
PET scans are known for lighting up in areas where one has had previous surgeries. PET scans do not highlite just cancer cells. They actual only highlite accumulations of the sugar used in the scan. This sugar also accumulates in damaged tissue. (I know my knee was badly damaged in a car wreck.) One important factor will be if the location continues to grow. CT scans will show this much better than PET's. For one met, I still like surgery, especially if the mitotic rate is zero or 1 and the surgery is fairly safe. I would like to see some trials of some of the new drugs, at a lower level than for active tumors, to be used as an adjuvant treatment for NED (No Evidence of Disease – on Scans) people. I would ewxpect the Onc to want to follow-up in 4,6 or 8 weeks ith another CT to help define what is going on. Maybe a needle biopsy before that. -
- December 28, 2013 at 7:35 am
One thing never mentioned here is that It was most likely a PET scan. PET scans are notorious for false positives And false negatives. (I've had many of both.)
I believe that if one can get in to a PD-1 trial, for fairly Systemic treatment, they should. This is the current leader in trials and expected to be much better than IPI (Yervoy) in the long run. PD-1 treatments, while having the possibility of long term negative effects seem to have less such problems than Ipi may.
PET scans are known for lighting up in areas where one has had previous surgeries. PET scans do not highlite just cancer cells. They actual only highlite accumulations of the sugar used in the scan. This sugar also accumulates in damaged tissue. (I know my knee was badly damaged in a car wreck.) One important factor will be if the location continues to grow. CT scans will show this much better than PET's. For one met, I still like surgery, especially if the mitotic rate is zero or 1 and the surgery is fairly safe. I would like to see some trials of some of the new drugs, at a lower level than for active tumors, to be used as an adjuvant treatment for NED (No Evidence of Disease – on Scans) people. I would ewxpect the Onc to want to follow-up in 4,6 or 8 weeks ith another CT to help define what is going on. Maybe a needle biopsy before that. -
- December 28, 2013 at 7:35 am
One thing never mentioned here is that It was most likely a PET scan. PET scans are notorious for false positives And false negatives. (I've had many of both.)
I believe that if one can get in to a PD-1 trial, for fairly Systemic treatment, they should. This is the current leader in trials and expected to be much better than IPI (Yervoy) in the long run. PD-1 treatments, while having the possibility of long term negative effects seem to have less such problems than Ipi may.
PET scans are known for lighting up in areas where one has had previous surgeries. PET scans do not highlite just cancer cells. They actual only highlite accumulations of the sugar used in the scan. This sugar also accumulates in damaged tissue. (I know my knee was badly damaged in a car wreck.) One important factor will be if the location continues to grow. CT scans will show this much better than PET's. For one met, I still like surgery, especially if the mitotic rate is zero or 1 and the surgery is fairly safe. I would like to see some trials of some of the new drugs, at a lower level than for active tumors, to be used as an adjuvant treatment for NED (No Evidence of Disease – on Scans) people. I would ewxpect the Onc to want to follow-up in 4,6 or 8 weeks ith another CT to help define what is going on. Maybe a needle biopsy before that.
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