› Forums › General Melanoma Community › Stage 4 – NED – what now?
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- August 16, 2011 at 9:22 pm
Hello all – My first post.
17 years ago had mole removed on my back, which was melanoma. Last month had mole removed on my chest. metastatic melanoma. PET and CAT showed nodule on lung 1.5 cm. Both oncologist and thoracic surgeon said not Mets. It was. Surgery for Thursday for wider excision of chest mole at which I am NED.
Oncologist says do nothing but revisit every 3 months with scan. 20% chance it will never come back.
Hello all – My first post.
17 years ago had mole removed on my back, which was melanoma. Last month had mole removed on my chest. metastatic melanoma. PET and CAT showed nodule on lung 1.5 cm. Both oncologist and thoracic surgeon said not Mets. It was. Surgery for Thursday for wider excision of chest mole at which I am NED.
Oncologist says do nothing but revisit every 3 months with scan. 20% chance it will never come back.
So, with 80% chance it will return, I am wondering if the wait and watch is standard protocol, or if I can be more proactive. Not that I want to do toxic treatment for nothing, but waiting is hard also. Thanks for your thoughts.
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- August 16, 2011 at 9:34 pm
I don't think watching and waiting is the way to go. There are many new treatments available, and if you only have internal mets to the lungs, it's worth trying to treat. Stage IV is not the death sentence it used to be. Time to find a new oncologist! Just my 2 cents.
Wendy
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- August 16, 2011 at 9:34 pm
I don't think watching and waiting is the way to go. There are many new treatments available, and if you only have internal mets to the lungs, it's worth trying to treat. Stage IV is not the death sentence it used to be. Time to find a new oncologist! Just my 2 cents.
Wendy
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- August 16, 2011 at 9:49 pm
You never said if they removed the lung met but I'm assuming that they did. I've been in the same position off and on for the last 5 years. I've chosen the surgical route and watch and wait.
To my knowledge there are only a very few options for those of us that are NED stage IV besides watch and wait. There is a trial at Moffitt (I believe it's the only place) you have to be hla 001 positive to be part of this trial. There is also a trial that has just started across the country. One arm is interfuron the other arm is ippi at 10mgs. The normal protocal of an infusion every 3 weeks for the first 12 weeks but then after that there is one insusion every 3 months for the rest of the year. If you have had either drug then you are ineligible.
My first year I was part of a trial with Leukine but that trial showed no survival improvement over watch and wait. There are Doctors that are prescribing it off label but you would have to see if your insurance would cover.
If you do a search on Dian of Spokane she did a trial last year where they took her only tumor and went through a process with that. (I don't recall the information but she is still on the board and often in chat)
The thought process (so I've been told) is that the drugs are toxic and only work on a percentage of people. If they have nothing to observe then they don't know if it is working or not.
I'm not saying it's easy but for some of us it's been a successful approach.
Linda
Stage IV since 06, NED almost 3 months
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- August 16, 2011 at 10:27 pm
I do apologize, I should have welcomed you to the board! After I sent my message and reread yours and realized you were posting for the first time.
I also had a late recurrance like you. Mine was 27 years! I've had multiple primaries also but they knew my metastices was from the first because it was deep under the scar line. My original metastices in 06 was to the breast, then in 09 it went to the bladder twice (I now have cystoscopies on a regular basis and as of last week was still clear! They did not do a wide excision because it would have forced a bladder removal due to the size of my bladder. Then it went to the node behind my clavicle (first time it was in the lymph nodes), and a node in the arm. My most recent met was in the same lymph basin but toward my elbow. After the removal of that one I just finished on Friday radiation to the area. It's running down the ulnar nerve and they couldn't get a margin. During this time they have spotted 2 small nodules in the lungs but they have decreased in size over the last 2 scans.
So, they've been cherry picking. I had another scare just a few weeks ago on the same arm and radiation was interuppted while they scanned, did an fna and then excised it to be sure but it was fatty tissue!! My mel specialist did tell me when we found this last lump that he could go along with the surgery when I was recurring with at least 6 months between but this time in was going to mean going systemic. Quality of life has meant a lot to me and I've been very fortunate.
If you do a search on King you will find she is another long term stage IV survivor who has relied on surgery. Originally she did interfuron when stage 3 and then did do the same Leukine trial that I was in (or it was similar).
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- August 16, 2011 at 10:27 pm
I do apologize, I should have welcomed you to the board! After I sent my message and reread yours and realized you were posting for the first time.
I also had a late recurrance like you. Mine was 27 years! I've had multiple primaries also but they knew my metastices was from the first because it was deep under the scar line. My original metastices in 06 was to the breast, then in 09 it went to the bladder twice (I now have cystoscopies on a regular basis and as of last week was still clear! They did not do a wide excision because it would have forced a bladder removal due to the size of my bladder. Then it went to the node behind my clavicle (first time it was in the lymph nodes), and a node in the arm. My most recent met was in the same lymph basin but toward my elbow. After the removal of that one I just finished on Friday radiation to the area. It's running down the ulnar nerve and they couldn't get a margin. During this time they have spotted 2 small nodules in the lungs but they have decreased in size over the last 2 scans.
So, they've been cherry picking. I had another scare just a few weeks ago on the same arm and radiation was interuppted while they scanned, did an fna and then excised it to be sure but it was fatty tissue!! My mel specialist did tell me when we found this last lump that he could go along with the surgery when I was recurring with at least 6 months between but this time in was going to mean going systemic. Quality of life has meant a lot to me and I've been very fortunate.
If you do a search on King you will find she is another long term stage IV survivor who has relied on surgery. Originally she did interfuron when stage 3 and then did do the same Leukine trial that I was in (or it was similar).
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- August 16, 2011 at 9:49 pm
You never said if they removed the lung met but I'm assuming that they did. I've been in the same position off and on for the last 5 years. I've chosen the surgical route and watch and wait.
To my knowledge there are only a very few options for those of us that are NED stage IV besides watch and wait. There is a trial at Moffitt (I believe it's the only place) you have to be hla 001 positive to be part of this trial. There is also a trial that has just started across the country. One arm is interfuron the other arm is ippi at 10mgs. The normal protocal of an infusion every 3 weeks for the first 12 weeks but then after that there is one insusion every 3 months for the rest of the year. If you have had either drug then you are ineligible.
My first year I was part of a trial with Leukine but that trial showed no survival improvement over watch and wait. There are Doctors that are prescribing it off label but you would have to see if your insurance would cover.
If you do a search on Dian of Spokane she did a trial last year where they took her only tumor and went through a process with that. (I don't recall the information but she is still on the board and often in chat)
The thought process (so I've been told) is that the drugs are toxic and only work on a percentage of people. If they have nothing to observe then they don't know if it is working or not.
I'm not saying it's easy but for some of us it's been a successful approach.
Linda
Stage IV since 06, NED almost 3 months
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- August 16, 2011 at 9:55 pm
I was also Stage IV NED after removal of a lung met. That was in 2000. I did a trial of GM-CSF (Leukine) for 2-1/2 years and stayed NED for 10 years. I did have recurrences this year, but it may be that the Leukine held off the MM and bought me time.
Best wishes,
Harry
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- August 16, 2011 at 9:55 pm
I was also Stage IV NED after removal of a lung met. That was in 2000. I did a trial of GM-CSF (Leukine) for 2-1/2 years and stayed NED for 10 years. I did have recurrences this year, but it may be that the Leukine held off the MM and bought me time.
Best wishes,
Harry
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- August 17, 2011 at 1:59 am
My husband had a lung tumor removed in July that made him NED. Treatment options are tough, most clinical trials need measurable disease, so we knew we were limited in that regard. Also, my husband is braf negative. Ipi/yervoy (off trial)) is not prescribed for resectable disease. So in your shoes, I would get your blood tested for HLA status (protein in blood), as some vaccine trials will take you on if you are HLA02 positive. I think there is a trial with Dr Weber for resectable disease but does require HLA02 positive. My husband is HLA02 negative, so not an option for us. Our doctor suggested watch and wait and scans, but after researching we suggested leukine, knowing that the current research on this treatment is that it may delay recurrence but hasnt been proven to increase overall survival. Our doctor totally gets us, that we dont have watch and wait personalities, so he did agree to prescribe the leukine and our insurance company is covering it. My husband is just completing his first 14 days of injections, and so far
so good. Good luck to you! Valerie (phil’s wife) -
- August 17, 2011 at 1:59 am
My husband had a lung tumor removed in July that made him NED. Treatment options are tough, most clinical trials need measurable disease, so we knew we were limited in that regard. Also, my husband is braf negative. Ipi/yervoy (off trial)) is not prescribed for resectable disease. So in your shoes, I would get your blood tested for HLA status (protein in blood), as some vaccine trials will take you on if you are HLA02 positive. I think there is a trial with Dr Weber for resectable disease but does require HLA02 positive. My husband is HLA02 negative, so not an option for us. Our doctor suggested watch and wait and scans, but after researching we suggested leukine, knowing that the current research on this treatment is that it may delay recurrence but hasnt been proven to increase overall survival. Our doctor totally gets us, that we dont have watch and wait personalities, so he did agree to prescribe the leukine and our insurance company is covering it. My husband is just completing his first 14 days of injections, and so far
so good. Good luck to you! Valerie (phil’s wife) -
- August 17, 2011 at 2:11 am
Sometimes there is just no way of knowing for sure.
I do not mean that in a bad way, but the further out some of us go, the percentage just doesn't mean that much because we havve already beat the odds.
Doing nothing, unless there is obvious insurmountable odds, makes no sense to me.
I am constantly flummoxed when people complain about the "toxic" effects of treatments but are not compared to the toxic effects of death.
Don't know what to tell you other than to work the problem or quit.
Charlie S
Stage IV since 1996 with a boatload of recurrences.
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- August 17, 2011 at 2:14 am
Sorry to have to 'meet' you here. I am stage iv – watch and wait. In March I had 2 small nodules removed from my left lung (my ct scan about that time showed a dozen spots between the 2 lungs). April and August scans shows NED. My oncologist (I am seen at Sloan) has decided it's best to just keep a close eye on me vs. doing ipi or another treatment. If my system seems to be keeping things at bay, why mess with it?
It's not an easy decision to make. Sometimes I consider if I should take time off work just to concentrate on me and getting as healthy as I can (sleeping when I'm tired, working out, etc).
Positive thoughts your way.
Erin
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- August 17, 2011 at 2:14 am
Sorry to have to 'meet' you here. I am stage iv – watch and wait. In March I had 2 small nodules removed from my left lung (my ct scan about that time showed a dozen spots between the 2 lungs). April and August scans shows NED. My oncologist (I am seen at Sloan) has decided it's best to just keep a close eye on me vs. doing ipi or another treatment. If my system seems to be keeping things at bay, why mess with it?
It's not an easy decision to make. Sometimes I consider if I should take time off work just to concentrate on me and getting as healthy as I can (sleeping when I'm tired, working out, etc).
Positive thoughts your way.
Erin
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- August 17, 2011 at 2:11 am
Sometimes there is just no way of knowing for sure.
I do not mean that in a bad way, but the further out some of us go, the percentage just doesn't mean that much because we havve already beat the odds.
Doing nothing, unless there is obvious insurmountable odds, makes no sense to me.
I am constantly flummoxed when people complain about the "toxic" effects of treatments but are not compared to the toxic effects of death.
Don't know what to tell you other than to work the problem or quit.
Charlie S
Stage IV since 1996 with a boatload of recurrences.
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Tagged: cutaneous melanoma
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