› Forums › General Melanoma Community › Those of you who are currently NED?…Question…
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momof2kids.
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- October 4, 2011 at 2:31 am
For all of you who are currently NED, you had tumors before, but they are 100% gone, or so small, they can't call them tumors, etc? I see plenty of people posting lately who are NED, whether they are Stage 0 thru 4….and I just wonder how that can happen at Stage 4 (which is what I am).
I know trying to get rid of tumors in any part of your body is what we all want, to continue surviving and living on this beautiful earth, but I know how hard it is to end up NED I'm sure.
For all of you who are currently NED, you had tumors before, but they are 100% gone, or so small, they can't call them tumors, etc? I see plenty of people posting lately who are NED, whether they are Stage 0 thru 4….and I just wonder how that can happen at Stage 4 (which is what I am).
I know trying to get rid of tumors in any part of your body is what we all want, to continue surviving and living on this beautiful earth, but I know how hard it is to end up NED I'm sure.
I'm currently going thru Yervoy (had 2nd injection last week), but I'm always thinking about the future, and just trying to find out if your tumors disappeared completely, or are so small they don't think they are a threat at the time and they should stay small for months or years upon end.
Just always trying to grab ahold of some hope here & there to keep myself going.
Just praying that the Yervoy will shrink my spots (none of this enlarging crap they mentioned that may happen).
Just want to keep living for me & my boys!
Sorry if I keep rambling, but just trying to figure out what exactly you all mean by NED, like they haven't noticed any tumors, like as if you were cancer free, etc.
I just keep having horrible thoughts about leaving my kids behind, I know I can die at anytime, if something were to grow , etc, but I just hear stories of living Stage IV for years, 10+ years, and I just don't know if I can believe it's true.
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- October 4, 2011 at 3:19 am
A few years ago many of us went to a melanoma symposium in Chapel Hill NC. We all got to meet Rick from NC. He had metastises everywhere and did IL2 and has been clear ever since. It's been about 20 years. I wish that more would have the same response. We have several on the board that have done IL2 and have been NED but they say only about 6 – 10 % is a full responder.
For myself I've been stage IV since 06. I've been surgically NED. I've had 7 recurrances and each time they've been able to resect the tumors and my own immune system continues. I'm one of the luckier ones. Tomorrow I have my scans and see if I've been able to continue.
NED means "no evidence of disease". That means that from scans they have not been able to tell if there are any disease. When stage I or stage 2 that could simply mean that when the wide excision it didn't leave anything behind. Stage 3 could mean that they were able to get it all before the cells went beyond the regional area. For stage IV it usually means there are cells wandering around. The simplest to explain it is the cells haven't find a place to settle and grow or gather more together. If the drug works for you maybe it could kill all of the cells. The immunotherapies take off the brakes for the immune system and it will then kill the malignant cells. That's how it's supposed to work. It doesn't always happen. The hope is that if you need to try more therapies you have time to find the one that will work for you.
It's difficult but learn to enjoy for the moment. We all hope we're out here for many years and with some of the new drugs it hopefully will help. Also, many have been on the board for many that have active disease and still have a full life.
You have young children which makes it so much more difficult. Do things to help your children for the future. Write them letters, videos ect. While you hope your there to watch them grow, you also need to also prepare.
Linda
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- October 4, 2011 at 3:19 am
A few years ago many of us went to a melanoma symposium in Chapel Hill NC. We all got to meet Rick from NC. He had metastises everywhere and did IL2 and has been clear ever since. It's been about 20 years. I wish that more would have the same response. We have several on the board that have done IL2 and have been NED but they say only about 6 – 10 % is a full responder.
For myself I've been stage IV since 06. I've been surgically NED. I've had 7 recurrances and each time they've been able to resect the tumors and my own immune system continues. I'm one of the luckier ones. Tomorrow I have my scans and see if I've been able to continue.
NED means "no evidence of disease". That means that from scans they have not been able to tell if there are any disease. When stage I or stage 2 that could simply mean that when the wide excision it didn't leave anything behind. Stage 3 could mean that they were able to get it all before the cells went beyond the regional area. For stage IV it usually means there are cells wandering around. The simplest to explain it is the cells haven't find a place to settle and grow or gather more together. If the drug works for you maybe it could kill all of the cells. The immunotherapies take off the brakes for the immune system and it will then kill the malignant cells. That's how it's supposed to work. It doesn't always happen. The hope is that if you need to try more therapies you have time to find the one that will work for you.
It's difficult but learn to enjoy for the moment. We all hope we're out here for many years and with some of the new drugs it hopefully will help. Also, many have been on the board for many that have active disease and still have a full life.
You have young children which makes it so much more difficult. Do things to help your children for the future. Write them letters, videos ect. While you hope your there to watch them grow, you also need to also prepare.
Linda
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- October 4, 2011 at 3:23 am
Thanks Linda.
Now you said you've had your tumors removed surgically, where were they that they were able to remove them.
I had 1 spot in my lung, and 2 in my Liver, and Brain spots (which for now the Brain Doctor said were shrinking). I'm just surprised that the doctor can't suggest that they go in and remove my Lung & liver spots if possible.
I have many more questions to ask them during my next visit in 2 weeks.
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- October 4, 2011 at 3:39 am
Usually they will surgically remove when there is one spot at a time. Mine have been on the breast (deep), bladder twice, node behind the clavicale, twice in nodes in the arm. I've had to twist my oncs arm a few times to agree to the surgery. Last time was a scare with a new lump just a month later below the other nodes on the arm. He told me then he wasn't going with my treatments anymore (surgery). Ends up it was fatty tissue! He said he could agree with me with a new spot every 6 months. Less then that he feels he needs to start systemic. I do have 2 spots on my lungs. If tomorow's scan shows they are stable they will be 10 months. They are small and he feels these spots are not malignant but they can't be sure. Last scans showed they were 2 mm smaller. I asked him if he would have the surgeon remove the lung nodules if it was mel but he felt it would be time to go systemic. He agreed if it didn't respond and also didn't turn into many mets then he would have them surgically removed.
The problem is that when surgically resected then they won't treat you with a drug. I'd like to do both to give it a double whammy. There is a new trial now that was discussed with me but there are 2 arms. One was yervoy and the other was interfuron. I drive over 2 hours and couldn't do interfuron with that far of a distance. I also don't know if I actually want to do that anyway.
If the Yervoy doesn't work you need to be thinking ahead of what your next plan will be ready to attack.
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- October 4, 2011 at 3:39 am
Usually they will surgically remove when there is one spot at a time. Mine have been on the breast (deep), bladder twice, node behind the clavicale, twice in nodes in the arm. I've had to twist my oncs arm a few times to agree to the surgery. Last time was a scare with a new lump just a month later below the other nodes on the arm. He told me then he wasn't going with my treatments anymore (surgery). Ends up it was fatty tissue! He said he could agree with me with a new spot every 6 months. Less then that he feels he needs to start systemic. I do have 2 spots on my lungs. If tomorow's scan shows they are stable they will be 10 months. They are small and he feels these spots are not malignant but they can't be sure. Last scans showed they were 2 mm smaller. I asked him if he would have the surgeon remove the lung nodules if it was mel but he felt it would be time to go systemic. He agreed if it didn't respond and also didn't turn into many mets then he would have them surgically removed.
The problem is that when surgically resected then they won't treat you with a drug. I'd like to do both to give it a double whammy. There is a new trial now that was discussed with me but there are 2 arms. One was yervoy and the other was interfuron. I drive over 2 hours and couldn't do interfuron with that far of a distance. I also don't know if I actually want to do that anyway.
If the Yervoy doesn't work you need to be thinking ahead of what your next plan will be ready to attack.
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- October 4, 2011 at 3:43 am
Ok, thanks again.
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- October 4, 2011 at 3:43 am
Ok, thanks again.
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- October 4, 2011 at 3:23 am
Thanks Linda.
Now you said you've had your tumors removed surgically, where were they that they were able to remove them.
I had 1 spot in my lung, and 2 in my Liver, and Brain spots (which for now the Brain Doctor said were shrinking). I'm just surprised that the doctor can't suggest that they go in and remove my Lung & liver spots if possible.
I have many more questions to ask them during my next visit in 2 weeks.
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- October 4, 2011 at 3:54 am
One of the phrases my primary oncologist has used with me (between occurrences) is, 'no grossly visible evidence of disease'. Individual cells aren't going to show up on a PET scan or MRI. I guess NGVED is a mouthful.
Yervoy as a systemic treatment, like IL-2, offers the possibility of going after those individual cells, and not just the grossly visible tumors.
My other oncologist has said that he and other oncologists think there are a lot more people walking around with melanoma than know it. But the trick is, their immune systems are ever-so-slightly holding it in check, possible with melanoma since it is often such an immunologically sensitive cancer.
So that makes me hopeful, even if we can't eradicate every last cell, there's a real possibility we can get it down to where it can be held in check again. I try stay healthy immune-wise, diet, excercise, sleep, and so forth.
Best of luck.
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- October 4, 2011 at 11:30 am
I know your fear all too well. My daughter turns 2 at the end of this month and I can't imagine leaving her and pray this won't happen for a very long time.
I have numerous spots on my lungs and find hope that there are people out there whose mets disappeared while on this drug. I think the majority of people's mets shrunk and over time disappeared or became spots with no activity. There are also many people,regardless of what type of treatment they had, who are stable for years.
I don't worry so much about the ones I have as I do about them making a home elsewhere. I have my final infusion next week and then scans on Hallowe'en. I already have scanxiety!
I truly hope that this treatment works for you and you can enjoy a very long, beautiful life with your family. Keep positive and believe this will work!
Lisa – Stage 4
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- October 4, 2011 at 3:17 pm
Thanks for replying everyone. Lisa13, I think about you alot, as we're both mom's to young kid(s) , and we're both on the Yervoy and we're both young and holding on for these little ones we have. I too , of course, hope it works for you, just like I hope it'll work for me! Yes, the Scanxiety, I get that too, and I'm like 5 weeks away from that scan, and already nervous!
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- October 4, 2011 at 3:17 pm
Thanks for replying everyone. Lisa13, I think about you alot, as we're both mom's to young kid(s) , and we're both on the Yervoy and we're both young and holding on for these little ones we have. I too , of course, hope it works for you, just like I hope it'll work for me! Yes, the Scanxiety, I get that too, and I'm like 5 weeks away from that scan, and already nervous!
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- October 4, 2011 at 11:30 am
I know your fear all too well. My daughter turns 2 at the end of this month and I can't imagine leaving her and pray this won't happen for a very long time.
I have numerous spots on my lungs and find hope that there are people out there whose mets disappeared while on this drug. I think the majority of people's mets shrunk and over time disappeared or became spots with no activity. There are also many people,regardless of what type of treatment they had, who are stable for years.
I don't worry so much about the ones I have as I do about them making a home elsewhere. I have my final infusion next week and then scans on Hallowe'en. I already have scanxiety!
I truly hope that this treatment works for you and you can enjoy a very long, beautiful life with your family. Keep positive and believe this will work!
Lisa – Stage 4
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- October 4, 2011 at 3:54 am
One of the phrases my primary oncologist has used with me (between occurrences) is, 'no grossly visible evidence of disease'. Individual cells aren't going to show up on a PET scan or MRI. I guess NGVED is a mouthful.
Yervoy as a systemic treatment, like IL-2, offers the possibility of going after those individual cells, and not just the grossly visible tumors.
My other oncologist has said that he and other oncologists think there are a lot more people walking around with melanoma than know it. But the trick is, their immune systems are ever-so-slightly holding it in check, possible with melanoma since it is often such an immunologically sensitive cancer.
So that makes me hopeful, even if we can't eradicate every last cell, there's a real possibility we can get it down to where it can be held in check again. I try stay healthy immune-wise, diet, excercise, sleep, and so forth.
Best of luck.
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- October 4, 2011 at 3:18 pm
My husband's tumors were intially in his lungs and he did IL-2. The treatment worked except for one tumor that shrunk and hung out for a year until NIH decided to surgically remove it. It was a dead tumor not a single cell of melanoma they told us. We were so happy, his fellow told us he was a complete responder. Unfortunately, 4 months later my husband had intestinal mets show up and they were removed surgically. He has been NED since July 2009 his last surgery, so they say they do not see anything and there is nothing to watch. We always ask twice, is there anything you see that is suspicious and they say no. So there is no evidence of disease and we hope it stays that way.
We have two boys 6 and 8 now. We cherish everyday and we hope they never have to see him go through anymore treatments or surgery. Believe that there are survivors and that you will be one for your boys. Believe that your treatment will work. That probably sounds crazy but the whole time my husband was doing IL-2 he kept saying don't worry it will work. There must be something to that posititive way of thinking.
Rebecca
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- October 4, 2011 at 3:18 pm
My husband's tumors were intially in his lungs and he did IL-2. The treatment worked except for one tumor that shrunk and hung out for a year until NIH decided to surgically remove it. It was a dead tumor not a single cell of melanoma they told us. We were so happy, his fellow told us he was a complete responder. Unfortunately, 4 months later my husband had intestinal mets show up and they were removed surgically. He has been NED since July 2009 his last surgery, so they say they do not see anything and there is nothing to watch. We always ask twice, is there anything you see that is suspicious and they say no. So there is no evidence of disease and we hope it stays that way.
We have two boys 6 and 8 now. We cherish everyday and we hope they never have to see him go through anymore treatments or surgery. Believe that there are survivors and that you will be one for your boys. Believe that your treatment will work. That probably sounds crazy but the whole time my husband was doing IL-2 he kept saying don't worry it will work. There must be something to that posititive way of thinking.
Rebecca
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- October 4, 2011 at 4:02 pm
Hi Mom,
I totally understand your concern. At first I was so worried about leaving my young daughter, and now my focus is on creating meaningful memories, restoring relationships, and having fun!! I was all caught up in the statistics at first, not so much any more. I have seen miracles happen! (One of them is the sheer amount of breakthroughs that are happening in the cancer world right now)
There are so many people who have been completely healed of this incredible disease. Yes, there are those who don't, and we are not really sure why some do and some don't, but scientists are on the verge of finding out.
In the meantime, I am donning full battle gear and my combat boots, and I'm going to war!!
Here is one story of a man who was on death's door step – tumors everywhere, including his pancreas. He now has a ministry specifically for cancer patients and their care takers. His name is Joe Fornear and his wife is Terri. Joe wrote a book about his battle, including his battle with doubts. If you send me your address, I would be happy to mail it to you!!
http://www.mystronghold.org (Joe's ministry)
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- October 4, 2011 at 4:02 pm
Hi Mom,
I totally understand your concern. At first I was so worried about leaving my young daughter, and now my focus is on creating meaningful memories, restoring relationships, and having fun!! I was all caught up in the statistics at first, not so much any more. I have seen miracles happen! (One of them is the sheer amount of breakthroughs that are happening in the cancer world right now)
There are so many people who have been completely healed of this incredible disease. Yes, there are those who don't, and we are not really sure why some do and some don't, but scientists are on the verge of finding out.
In the meantime, I am donning full battle gear and my combat boots, and I'm going to war!!
Here is one story of a man who was on death's door step – tumors everywhere, including his pancreas. He now has a ministry specifically for cancer patients and their care takers. His name is Joe Fornear and his wife is Terri. Joe wrote a book about his battle, including his battle with doubts. If you send me your address, I would be happy to mail it to you!!
http://www.mystronghold.org (Joe's ministry)
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- October 4, 2011 at 4:08 pm
Linda summed it up pretty well. NED means that on the scans, they can not identify any formations (tumors from the cancer). I was diagnosed initially at Stage 4 with a single met in my sacrum. It was removed surgically and treated with gamma radiation. That was in June 2008 and I am now NED.. It is understandable to be anxious everyday and have doubts about the future. I was so glad when I found this website! There are a number of stage 4 survivors here and they are a great group for helping to build hope. I am still torn about thinking about what time I have left and I should plan retirement ( I chose to continue working while I feel that I am able). My thoughts always go back and forth between planning a retirement for my wife and I, or if I should get rid of everything and concentrate on getting my wife set up for "when I'm not around". Having 5 grandkids makes it even more difficult. The longer I go NED, the more I feel that I will be around to enjoy them all. All I can advise you is that attitude makes a difference with dealing with Melanoma. It may not affect your survival, but it definitely helps to deal with it. I've had several family members that have had various forms of cancer, and not survived. Those of us that have experienced cancer are a unique group. We speak to each other and have our own support group. What I tell my family and friends that are fighting their own fight is to "just live one day at a time". Get up in the morning and feel glad that you are still here. Set a goal for the day (even to just have a good day). At the end of the day, reflect on it and enjoy it if your goal was achieved. Eventually, after enough days of survival, you will begin to feel "alive" again. Meaning that you're gonna be here for a while, and while you are, you're going to enjoy life and love ones.
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- October 5, 2011 at 2:19 am
dodgedh2 , you have a good recommendation about setting a goal for the day, and I think I need to do that !
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- October 5, 2011 at 2:19 am
dodgedh2 , you have a good recommendation about setting a goal for the day, and I think I need to do that !
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- October 5, 2011 at 2:19 am
dodgedh2 , you have a good recommendation about setting a goal for the day, and I think I need to do that !
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- October 4, 2011 at 4:08 pm
Linda summed it up pretty well. NED means that on the scans, they can not identify any formations (tumors from the cancer). I was diagnosed initially at Stage 4 with a single met in my sacrum. It was removed surgically and treated with gamma radiation. That was in June 2008 and I am now NED.. It is understandable to be anxious everyday and have doubts about the future. I was so glad when I found this website! There are a number of stage 4 survivors here and they are a great group for helping to build hope. I am still torn about thinking about what time I have left and I should plan retirement ( I chose to continue working while I feel that I am able). My thoughts always go back and forth between planning a retirement for my wife and I, or if I should get rid of everything and concentrate on getting my wife set up for "when I'm not around". Having 5 grandkids makes it even more difficult. The longer I go NED, the more I feel that I will be around to enjoy them all. All I can advise you is that attitude makes a difference with dealing with Melanoma. It may not affect your survival, but it definitely helps to deal with it. I've had several family members that have had various forms of cancer, and not survived. Those of us that have experienced cancer are a unique group. We speak to each other and have our own support group. What I tell my family and friends that are fighting their own fight is to "just live one day at a time". Get up in the morning and feel glad that you are still here. Set a goal for the day (even to just have a good day). At the end of the day, reflect on it and enjoy it if your goal was achieved. Eventually, after enough days of survival, you will begin to feel "alive" again. Meaning that you're gonna be here for a while, and while you are, you're going to enjoy life and love ones.
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