› Forums › General Melanoma Community › NEAD vs NED
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_Paul_.
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- February 18, 2016 at 5:30 am
I had a great meeting with my oncologist today.
The first topic was my scan results and if no FDG uptake and the radiologist's summary of "no PET evidence to suggest macroscopic metastatic melanoma" meant NED or not. Dr. Thompson's take on it was that in the large majority of cases the remaining nodules are scar tissue. He thinks there may possibly be cases where tumors and the immune system end up in some form of stable standoff (he used a great word for it that I am failing to recall) but it is more likely that the mel is dead. So by his reasoning, he said that he does believe that I have been granted membership to the NED club.
Next we talked about how long to continue therapy, and the article just posted by Justin (thank you!) was perfect since it gave me some context to have a meaningful discussion. He agrees with Dr. Weber's thinking so we will continue the infusions for another 4 to 6 months, then decide whether to stop altogether. I am already getting treatment at half the approved rate, e.g. once every 6 weeks instead of 3, to manage side effects.
Now here comes the really weird part. At the end of the visit I was hit by this pretty strong unexpected emotion that was a mix of joy, guilt and deep sympathy for everyone continuing to deal with this disease. There are so many here on this site that have endured so much worse than I, and there are some that despite putting up a truly heroic fight (like Artie for example) didn't make it. I'm assuming this is just because the state of NEDness is new and the feeling will fade. I bet there are some of you that have felt this too.
Anyway best wishes for everyone and I am very grateful for this awesome community.
– Paul
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- February 18, 2016 at 7:15 am
So happy for you Paul that's great news. It is so nice to hear ned , there is a few with results at present and had good ones, so pleased for all,
enjoy each day and celebrate keep well
scooby123❤️
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- February 18, 2016 at 7:34 am
Congratulations, Paul! That's truly phenomenal news! I have not been in your position (yet) but I am not surprised by your mix of emotions. I think "survivor's guilt" is a term used to describe the feeling when one survives an ordeal that other good people do not (it's common in the military, traffic accidents and the like). Life is extremely precious. I think we honor those that have lost theirs when we do what we can to cherish and enjoy our own. It's what we would have wanted for them if the situation were reversed. I know when it's my time to go, I don't want anyone to waste one second of their precious life feeling sad for me. Life is for the living. We'll have plenty of time to be dead ourselves one day. But right now, it's time to live! Enjoy your good news, Paul!
Cheers,
Maggie
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- February 18, 2016 at 7:34 am
Congratulations, Paul! That's truly phenomenal news! I have not been in your position (yet) but I am not surprised by your mix of emotions. I think "survivor's guilt" is a term used to describe the feeling when one survives an ordeal that other good people do not (it's common in the military, traffic accidents and the like). Life is extremely precious. I think we honor those that have lost theirs when we do what we can to cherish and enjoy our own. It's what we would have wanted for them if the situation were reversed. I know when it's my time to go, I don't want anyone to waste one second of their precious life feeling sad for me. Life is for the living. We'll have plenty of time to be dead ourselves one day. But right now, it's time to live! Enjoy your good news, Paul!
Cheers,
Maggie
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- February 18, 2016 at 7:34 am
Congratulations, Paul! That's truly phenomenal news! I have not been in your position (yet) but I am not surprised by your mix of emotions. I think "survivor's guilt" is a term used to describe the feeling when one survives an ordeal that other good people do not (it's common in the military, traffic accidents and the like). Life is extremely precious. I think we honor those that have lost theirs when we do what we can to cherish and enjoy our own. It's what we would have wanted for them if the situation were reversed. I know when it's my time to go, I don't want anyone to waste one second of their precious life feeling sad for me. Life is for the living. We'll have plenty of time to be dead ourselves one day. But right now, it's time to live! Enjoy your good news, Paul!
Cheers,
Maggie
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- February 18, 2016 at 10:31 am
Paul, awesome news! Your news (and overall story) gives us all hope. I empathize with the mixed emotions, but I'd aim to move past the survivor's guilt quickly.
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- February 18, 2016 at 2:08 pm
Hi Paul-
So happy to read your news this morning……and so pleased you can now be a part of the NED club…..
Its been an active week for many of us regarding scans and results.
I understand your emotions but hope you can go out and celebrate and enjoy what we all hope will be your new normal !
I am trying to do the same…..
AGAIN, CONGRATS on such great news!
jenny
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- February 18, 2016 at 2:08 pm
Hi Paul-
So happy to read your news this morning……and so pleased you can now be a part of the NED club…..
Its been an active week for many of us regarding scans and results.
I understand your emotions but hope you can go out and celebrate and enjoy what we all hope will be your new normal !
I am trying to do the same…..
AGAIN, CONGRATS on such great news!
jenny
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- February 18, 2016 at 2:08 pm
Hi Paul-
So happy to read your news this morning……and so pleased you can now be a part of the NED club…..
Its been an active week for many of us regarding scans and results.
I understand your emotions but hope you can go out and celebrate and enjoy what we all hope will be your new normal !
I am trying to do the same…..
AGAIN, CONGRATS on such great news!
jenny
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- February 18, 2016 at 2:25 pm
Excellent news.
And I'm glad that you found the article helpful. I think we're both in similar positions – looking somewhat optimistically at what's next. Now, I only recently got an NED or NEAD result, but I think the thought process is somewhat similar at many offices. I think my doc is targeting a year or so more. My tolerance is very good, so part of that thought process is that it doesn't seem to be hurting me much.
As to the rest, I totally appreciate what I've come to discover is "survivor's" guilt. Of course, the catch to that is that a melanoma diagnosis with NED makes you feel like you're in limbo between "survivor" and "patient." Especially when treatment is roughly the same and the threat of recurrence, if not literal, is always on your mind. At least, that's my impression and experience.
And I think what I take away from that is a sense of duty to help. The reprieve isn't free and I think as a result I have at least some responsibility to help others taking this on.
Anyway – good luck and continued success. I hope to keep tracking right along with you and discussing getting off therapies!
-Justin
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- February 18, 2016 at 2:25 pm
Excellent news.
And I'm glad that you found the article helpful. I think we're both in similar positions – looking somewhat optimistically at what's next. Now, I only recently got an NED or NEAD result, but I think the thought process is somewhat similar at many offices. I think my doc is targeting a year or so more. My tolerance is very good, so part of that thought process is that it doesn't seem to be hurting me much.
As to the rest, I totally appreciate what I've come to discover is "survivor's" guilt. Of course, the catch to that is that a melanoma diagnosis with NED makes you feel like you're in limbo between "survivor" and "patient." Especially when treatment is roughly the same and the threat of recurrence, if not literal, is always on your mind. At least, that's my impression and experience.
And I think what I take away from that is a sense of duty to help. The reprieve isn't free and I think as a result I have at least some responsibility to help others taking this on.
Anyway – good luck and continued success. I hope to keep tracking right along with you and discussing getting off therapies!
-Justin
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- February 18, 2016 at 2:51 pm
Thanks Justin!
You reminded me of another thing he said I forgot to mention in my first post was the tradeoff between continued treatment and side effects. It seems like the intensity of the side effects increases over time, although I have stabilized these past few months, likely because my doc reduced my treatment frequency. So that makes sense that if you are tolerating it well to continue. I think I have more side effects than most so that it makes sense for me to stop earlier if possible. My doc did mention a patient of his who insisted on remaining on treatment past the two year mark and developed diverticulitis.
– Paul
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- February 18, 2016 at 2:51 pm
Thanks Justin!
You reminded me of another thing he said I forgot to mention in my first post was the tradeoff between continued treatment and side effects. It seems like the intensity of the side effects increases over time, although I have stabilized these past few months, likely because my doc reduced my treatment frequency. So that makes sense that if you are tolerating it well to continue. I think I have more side effects than most so that it makes sense for me to stop earlier if possible. My doc did mention a patient of his who insisted on remaining on treatment past the two year mark and developed diverticulitis.
– Paul
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- February 18, 2016 at 2:51 pm
Thanks Justin!
You reminded me of another thing he said I forgot to mention in my first post was the tradeoff between continued treatment and side effects. It seems like the intensity of the side effects increases over time, although I have stabilized these past few months, likely because my doc reduced my treatment frequency. So that makes sense that if you are tolerating it well to continue. I think I have more side effects than most so that it makes sense for me to stop earlier if possible. My doc did mention a patient of his who insisted on remaining on treatment past the two year mark and developed diverticulitis.
– Paul
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- February 18, 2016 at 2:25 pm
Excellent news.
And I'm glad that you found the article helpful. I think we're both in similar positions – looking somewhat optimistically at what's next. Now, I only recently got an NED or NEAD result, but I think the thought process is somewhat similar at many offices. I think my doc is targeting a year or so more. My tolerance is very good, so part of that thought process is that it doesn't seem to be hurting me much.
As to the rest, I totally appreciate what I've come to discover is "survivor's" guilt. Of course, the catch to that is that a melanoma diagnosis with NED makes you feel like you're in limbo between "survivor" and "patient." Especially when treatment is roughly the same and the threat of recurrence, if not literal, is always on your mind. At least, that's my impression and experience.
And I think what I take away from that is a sense of duty to help. The reprieve isn't free and I think as a result I have at least some responsibility to help others taking this on.
Anyway – good luck and continued success. I hope to keep tracking right along with you and discussing getting off therapies!
-Justin
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- February 18, 2016 at 2:48 pm
Congratulations, Paul. Beautiful news with which to start another beautiful day! I think immunotherapy has changed more than how we treat a variety of cancers. It has required a readjustment about how we think about the effects of that therapy during and after, as well as how to evaluate progress along the way. Experts are having to find new ways to evaluate and describe the debris immunotherapy forces tumors to leave behind! In the early days of my study docs were actually doing biopsies of all that, but amazingly finding only dead cells, eosinophils, etc. And of course melanoma is such a @#5&8! beast, we've learned not to say 'cured'…using NED instead…so playing with that acronym sounds about right.
I think I understand the "NED" emotions you are describing. I have never been through as much as many have (though friends and family roll their eyes when I say this…I know what others have been dealt….and I know I have been lucky) and my heart will never forget the dears ones I have lost along the way. Folks close to me feel that the effort I put into this forum, my blog, and the research I do for strangers who contact me is a result of my own survivor's guilt. Maybe. Maybe not. I actively work to enjoy all parts of my life and day…every day. I do think when you've been placed in a position to help in life…that is what you should do…whether it be fixing bikes for kids who don't have them, helping someone change a blown tire, tutoring teens, or a mixture of all kinds of things. Maybe we should ALL have a little survivor's guilt….for surviving life!
However you choose to see it today and for a zillion days forward…live it up! Yours, c
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- February 18, 2016 at 2:48 pm
Congratulations, Paul. Beautiful news with which to start another beautiful day! I think immunotherapy has changed more than how we treat a variety of cancers. It has required a readjustment about how we think about the effects of that therapy during and after, as well as how to evaluate progress along the way. Experts are having to find new ways to evaluate and describe the debris immunotherapy forces tumors to leave behind! In the early days of my study docs were actually doing biopsies of all that, but amazingly finding only dead cells, eosinophils, etc. And of course melanoma is such a @#5&8! beast, we've learned not to say 'cured'…using NED instead…so playing with that acronym sounds about right.
I think I understand the "NED" emotions you are describing. I have never been through as much as many have (though friends and family roll their eyes when I say this…I know what others have been dealt….and I know I have been lucky) and my heart will never forget the dears ones I have lost along the way. Folks close to me feel that the effort I put into this forum, my blog, and the research I do for strangers who contact me is a result of my own survivor's guilt. Maybe. Maybe not. I actively work to enjoy all parts of my life and day…every day. I do think when you've been placed in a position to help in life…that is what you should do…whether it be fixing bikes for kids who don't have them, helping someone change a blown tire, tutoring teens, or a mixture of all kinds of things. Maybe we should ALL have a little survivor's guilt….for surviving life!
However you choose to see it today and for a zillion days forward…live it up! Yours, c
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- February 18, 2016 at 2:59 pm
Thanks Celeste!
My onc sounds like he is line with what you are saying about the debris – although he may have dumbed it down a little when de described it as "scar tissue".
I totally agree about helping people. I think that is one of the main purposes of life. And surviving what used to be a death sentence definitely makes one appreciate existence more keenly. I think that is a reason I like this forum so much. There are so many people like yourself paying it forward.
– Paul
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- February 18, 2016 at 2:59 pm
Thanks Celeste!
My onc sounds like he is line with what you are saying about the debris – although he may have dumbed it down a little when de described it as "scar tissue".
I totally agree about helping people. I think that is one of the main purposes of life. And surviving what used to be a death sentence definitely makes one appreciate existence more keenly. I think that is a reason I like this forum so much. There are so many people like yourself paying it forward.
– Paul
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- February 18, 2016 at 2:59 pm
Thanks Celeste!
My onc sounds like he is line with what you are saying about the debris – although he may have dumbed it down a little when de described it as "scar tissue".
I totally agree about helping people. I think that is one of the main purposes of life. And surviving what used to be a death sentence definitely makes one appreciate existence more keenly. I think that is a reason I like this forum so much. There are so many people like yourself paying it forward.
– Paul
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- February 18, 2016 at 2:48 pm
Congratulations, Paul. Beautiful news with which to start another beautiful day! I think immunotherapy has changed more than how we treat a variety of cancers. It has required a readjustment about how we think about the effects of that therapy during and after, as well as how to evaluate progress along the way. Experts are having to find new ways to evaluate and describe the debris immunotherapy forces tumors to leave behind! In the early days of my study docs were actually doing biopsies of all that, but amazingly finding only dead cells, eosinophils, etc. And of course melanoma is such a @#5&8! beast, we've learned not to say 'cured'…using NED instead…so playing with that acronym sounds about right.
I think I understand the "NED" emotions you are describing. I have never been through as much as many have (though friends and family roll their eyes when I say this…I know what others have been dealt….and I know I have been lucky) and my heart will never forget the dears ones I have lost along the way. Folks close to me feel that the effort I put into this forum, my blog, and the research I do for strangers who contact me is a result of my own survivor's guilt. Maybe. Maybe not. I actively work to enjoy all parts of my life and day…every day. I do think when you've been placed in a position to help in life…that is what you should do…whether it be fixing bikes for kids who don't have them, helping someone change a blown tire, tutoring teens, or a mixture of all kinds of things. Maybe we should ALL have a little survivor's guilt….for surviving life!
However you choose to see it today and for a zillion days forward…live it up! Yours, c
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- February 18, 2016 at 4:34 pm
Such wonderful news Paul!! What treatment have you been on? -
- February 18, 2016 at 4:34 pm
Such wonderful news Paul!! What treatment have you been on? -
- February 18, 2016 at 4:34 pm
Such wonderful news Paul!! What treatment have you been on? -
- February 18, 2016 at 10:08 pm
Paul,
Congrats on the NEAD. (BTW what does the "A" stand for? I missed that somewhere along the way)
How long to continue treatment is a tough one. To borrow one of Celeste's sayings, we are all ratties whether we are in a trial or not in regards to how long to stay on the treatment. Just about everyone I spoke with recommended 3 to 6 months after stable or NED (Wolchok, Weber, Salama (she's at Duke)). I remember Wolchok expressing some concern about the longterm impact of "super charging" our immune system for too long. He said they were starting to look into that.
On the other side of the coin there is this discussion:
Hamid definitely seems to think more is better. I'm not sure the others agree with him but no one counters his position. I'm really hoping the next ASCO shines some light on this subject.
I'm happy to hear your doctor's are optimistic about your remaining tumor. I have a one stuborn one as well but my doctors have been reluctant to say it's necrotic or scar tissue. May be due to the size. Mine is about 2 cm. Would love to cut that sucker out but it's just not in a good area to be messing around in.
Congrats again.
Brian
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- February 18, 2016 at 10:08 pm
Paul,
Congrats on the NEAD. (BTW what does the "A" stand for? I missed that somewhere along the way)
How long to continue treatment is a tough one. To borrow one of Celeste's sayings, we are all ratties whether we are in a trial or not in regards to how long to stay on the treatment. Just about everyone I spoke with recommended 3 to 6 months after stable or NED (Wolchok, Weber, Salama (she's at Duke)). I remember Wolchok expressing some concern about the longterm impact of "super charging" our immune system for too long. He said they were starting to look into that.
On the other side of the coin there is this discussion:
Hamid definitely seems to think more is better. I'm not sure the others agree with him but no one counters his position. I'm really hoping the next ASCO shines some light on this subject.
I'm happy to hear your doctor's are optimistic about your remaining tumor. I have a one stuborn one as well but my doctors have been reluctant to say it's necrotic or scar tissue. May be due to the size. Mine is about 2 cm. Would love to cut that sucker out but it's just not in a good area to be messing around in.
Congrats again.
Brian
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- February 19, 2016 at 5:55 am
Thanks Brian, and thanks for posting that link. As usual, there is no clear cut answer. I guess so far I have tended toward the lower end of the spectrum in terms of how much treatment to undergo (foregoing CLND and holding off on TIL as a plan B for example). No way to know for sure one way or another if I have made the optimal decisions so far of course. But I like being able to arrive at a decision based on more data, not less, which is why that was a good link.
The NEAD term came from Mat: No Evidence of Active Disease. We were talking about that earlier, if having potentially necrotic tumors could prevent from being NED.
I hear you about getting rid of the remaining tumors! Not a pleasant thought thinking there are evil black globs of deadly tumor potentially still living inside – or maybe just their ghosts. In my case none of the remaining "nodules" are very big, there are just too many to resect them all.
– Paul
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- February 19, 2016 at 5:55 am
Thanks Brian, and thanks for posting that link. As usual, there is no clear cut answer. I guess so far I have tended toward the lower end of the spectrum in terms of how much treatment to undergo (foregoing CLND and holding off on TIL as a plan B for example). No way to know for sure one way or another if I have made the optimal decisions so far of course. But I like being able to arrive at a decision based on more data, not less, which is why that was a good link.
The NEAD term came from Mat: No Evidence of Active Disease. We were talking about that earlier, if having potentially necrotic tumors could prevent from being NED.
I hear you about getting rid of the remaining tumors! Not a pleasant thought thinking there are evil black globs of deadly tumor potentially still living inside – or maybe just their ghosts. In my case none of the remaining "nodules" are very big, there are just too many to resect them all.
– Paul
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- February 19, 2016 at 5:55 am
Thanks Brian, and thanks for posting that link. As usual, there is no clear cut answer. I guess so far I have tended toward the lower end of the spectrum in terms of how much treatment to undergo (foregoing CLND and holding off on TIL as a plan B for example). No way to know for sure one way or another if I have made the optimal decisions so far of course. But I like being able to arrive at a decision based on more data, not less, which is why that was a good link.
The NEAD term came from Mat: No Evidence of Active Disease. We were talking about that earlier, if having potentially necrotic tumors could prevent from being NED.
I hear you about getting rid of the remaining tumors! Not a pleasant thought thinking there are evil black globs of deadly tumor potentially still living inside – or maybe just their ghosts. In my case none of the remaining "nodules" are very big, there are just too many to resect them all.
– Paul
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- February 18, 2016 at 10:08 pm
Paul,
Congrats on the NEAD. (BTW what does the "A" stand for? I missed that somewhere along the way)
How long to continue treatment is a tough one. To borrow one of Celeste's sayings, we are all ratties whether we are in a trial or not in regards to how long to stay on the treatment. Just about everyone I spoke with recommended 3 to 6 months after stable or NED (Wolchok, Weber, Salama (she's at Duke)). I remember Wolchok expressing some concern about the longterm impact of "super charging" our immune system for too long. He said they were starting to look into that.
On the other side of the coin there is this discussion:
Hamid definitely seems to think more is better. I'm not sure the others agree with him but no one counters his position. I'm really hoping the next ASCO shines some light on this subject.
I'm happy to hear your doctor's are optimistic about your remaining tumor. I have a one stuborn one as well but my doctors have been reluctant to say it's necrotic or scar tissue. May be due to the size. Mine is about 2 cm. Would love to cut that sucker out but it's just not in a good area to be messing around in.
Congrats again.
Brian
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- February 18, 2016 at 10:26 pm
Paul, this is fantastic news!! I agree with every person on here that this kind of news can be extremely emotional. Survivors guilt is very real. The daily cycle of emotion connected with this disease is all-consuming, and that doesn’t just go away when you get good news.I’ve been following a blog written by an MD with lymphoma. She wrote something recently that I found very moving, and I believe you can relate.
Keep your chin up. There’s so much to live for – don’t waste your days letting melanoma bring you down!
-
- February 18, 2016 at 10:26 pm
Paul, this is fantastic news!! I agree with every person on here that this kind of news can be extremely emotional. Survivors guilt is very real. The daily cycle of emotion connected with this disease is all-consuming, and that doesn’t just go away when you get good news.I’ve been following a blog written by an MD with lymphoma. She wrote something recently that I found very moving, and I believe you can relate.
Keep your chin up. There’s so much to live for – don’t waste your days letting melanoma bring you down!
-
- February 19, 2016 at 6:11 am
Thanks Lauren!
I have actually been fortunate with regard to the fear thing. The pembro caused me to experience some significant fatigue and I was unable to work for a while. I am now on Modafinil (AKA Provigil) which has made a world of difference. But my oncologist wasn't comfortable maintaining the prescription since it is more of a psych drug, so he referred me to the psychiatrist to take it on. As result I have to meet the psychiatrist every couple of months just so he can see how I'm doing to keep the prescription going. At first he would spend a lot of time checking my fear and anxiety levels but I think he is satisfied that I'm just an add duck and am doing ok in that department. I'm actually going to see him tomorrow.
And I agree with you about not letting the ****ing disease get in the way of enjoying life. It takes too much from us already, but I'll be damned if it is going to take away my enjoyment of living. To tell the truth, it has heightened it. So I am sure I will snap back to my usual self.
Best of wishes to you! – Paul
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- February 19, 2016 at 6:11 am
Thanks Lauren!
I have actually been fortunate with regard to the fear thing. The pembro caused me to experience some significant fatigue and I was unable to work for a while. I am now on Modafinil (AKA Provigil) which has made a world of difference. But my oncologist wasn't comfortable maintaining the prescription since it is more of a psych drug, so he referred me to the psychiatrist to take it on. As result I have to meet the psychiatrist every couple of months just so he can see how I'm doing to keep the prescription going. At first he would spend a lot of time checking my fear and anxiety levels but I think he is satisfied that I'm just an add duck and am doing ok in that department. I'm actually going to see him tomorrow.
And I agree with you about not letting the ****ing disease get in the way of enjoying life. It takes too much from us already, but I'll be damned if it is going to take away my enjoyment of living. To tell the truth, it has heightened it. So I am sure I will snap back to my usual self.
Best of wishes to you! – Paul
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- February 19, 2016 at 6:11 am
Thanks Lauren!
I have actually been fortunate with regard to the fear thing. The pembro caused me to experience some significant fatigue and I was unable to work for a while. I am now on Modafinil (AKA Provigil) which has made a world of difference. But my oncologist wasn't comfortable maintaining the prescription since it is more of a psych drug, so he referred me to the psychiatrist to take it on. As result I have to meet the psychiatrist every couple of months just so he can see how I'm doing to keep the prescription going. At first he would spend a lot of time checking my fear and anxiety levels but I think he is satisfied that I'm just an add duck and am doing ok in that department. I'm actually going to see him tomorrow.
And I agree with you about not letting the ****ing disease get in the way of enjoying life. It takes too much from us already, but I'll be damned if it is going to take away my enjoyment of living. To tell the truth, it has heightened it. So I am sure I will snap back to my usual self.
Best of wishes to you! – Paul
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- February 18, 2016 at 10:26 pm
Paul, this is fantastic news!! I agree with every person on here that this kind of news can be extremely emotional. Survivors guilt is very real. The daily cycle of emotion connected with this disease is all-consuming, and that doesn’t just go away when you get good news.I’ve been following a blog written by an MD with lymphoma. She wrote something recently that I found very moving, and I believe you can relate.
Keep your chin up. There’s so much to live for – don’t waste your days letting melanoma bring you down!
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