Test results and out look

One thing you have to remember is the stories on here are a very small population of the melanoma community as a whole. The people who have been NED for years typically don't come here anymore. Sometimes they'll post on here to remind others that NED is possible for many years after a stage 3 and 4 diagnosis. There have been many stage 3 folks who never progressed to stage 4 and stayed NED after surgery. I know how hard it is not to constantly wonder if the next scan will show something bad. This is a roller coaster, there are going to be ups and downs and twists and turns and it'll make you scream and it'll make you laugh. The one thing to remind yourself every day is that your fiance is alive, right now he is alive and he is NED and that is excellent! We tend to get wrapped up in the grim nature of this disease, but we all have to remember that we're alive, right now at this moment, you're alive and he's alive and that's awesome. No one can predict how their outcome will be, just as they couldn't predict the outcome of their life before cancer. You will learn to live and appreciate one day at a time, we all have to learn that lesson with this stuff. And, with time, it will get easier to deal with and become the new normal.

It can be really hard on caretakers, harder than on the patient. My boyfriend of nine years looses it over this stuff sometimes, we were ready to get married and start a family right before all this.. now those things have been halted while we focus on my health. It's hard to be the onlooker and not be able to fix it yourself. If you ever feel it's hard to handle and you need someone to talk to besides your fiance, don't hesitate to seek out a counselor or a support group for caretakers. My boyfriend has gone to a counselor for a while now and it's helped him a ton.

One thing you have to remember is the stories on here are a very small population of the melanoma community as a whole. The people who have been NED for years typically don't come here anymore. Sometimes they'll post on here to remind others that NED is possible for many years after a stage 3 and 4 diagnosis. There have been many stage 3 folks who never progressed to stage 4 and stayed NED after surgery. I know how hard it is not to constantly wonder if the next scan will show something bad. This is a roller coaster, there are going to be ups and downs and twists and turns and it'll make you scream and it'll make you laugh. The one thing to remind yourself every day is that your fiance is alive, right now he is alive and he is NED and that is excellent! We tend to get wrapped up in the grim nature of this disease, but we all have to remember that we're alive, right now at this moment, you're alive and he's alive and that's awesome. No one can predict how their outcome will be, just as they couldn't predict the outcome of their life before cancer. You will learn to live and appreciate one day at a time, we all have to learn that lesson with this stuff. And, with time, it will get easier to deal with and become the new normal.

It can be really hard on caretakers, harder than on the patient. My boyfriend of nine years looses it over this stuff sometimes, we were ready to get married and start a family right before all this.. now those things have been halted while we focus on my health. It's hard to be the onlooker and not be able to fix it yourself. If you ever feel it's hard to handle and you need someone to talk to besides your fiance, don't hesitate to seek out a counselor or a support group for caretakers. My boyfriend has gone to a counselor for a while now and it's helped him a ton.

One thing you have to remember is the stories on here are a very small population of the melanoma community as a whole. The people who have been NED for years typically don't come here anymore. Sometimes they'll post on here to remind others that NED is possible for many years after a stage 3 and 4 diagnosis. There have been many stage 3 folks who never progressed to stage 4 and stayed NED after surgery. I know how hard it is not to constantly wonder if the next scan will show something bad. This is a roller coaster, there are going to be ups and downs and twists and turns and it'll make you scream and it'll make you laugh. The one thing to remind yourself every day is that your fiance is alive, right now he is alive and he is NED and that is excellent! We tend to get wrapped up in the grim nature of this disease, but we all have to remember that we're alive, right now at this moment, you're alive and he's alive and that's awesome. No one can predict how their outcome will be, just as they couldn't predict the outcome of their life before cancer. You will learn to live and appreciate one day at a time, we all have to learn that lesson with this stuff. And, with time, it will get easier to deal with and become the new normal.

It can be really hard on caretakers, harder than on the patient. My boyfriend of nine years looses it over this stuff sometimes, we were ready to get married and start a family right before all this.. now those things have been halted while we focus on my health. It's hard to be the onlooker and not be able to fix it yourself. If you ever feel it's hard to handle and you need someone to talk to besides your fiance, don't hesitate to seek out a counselor or a support group for caretakers. My boyfriend has gone to a counselor for a while now and it's helped him a ton.

My husband was diagnosed stage 3c 19 months ago.  He had his PET upon initial discovery – it showed no spread.  He had sentinal node biopsy – they took 3 nodes and 1 came back positive.  He decided to have total lymph disection – they removed 42 additional nodes and 2 of those came back positive (micro mets).  He was placed on a study –  given either Ipi or Nivo (we don't know which) infusions for a year.  He has been NED since.  Poor guy has had a few skin biopsies (which came back negative) and he had a blood clot due to his port and frequent travel (he flies at least 2x a month) but he happily had his port removed 3 months ago – so that is not a concern any longer.

Every scan (3 month intervals for the first 2 years) is still surrounded with a great deal of anxiety.  That is just the new reality after a cancer diagnosis.  Remember that there are a lot of cancer surivial stories.  I try to think that we are going to be one of them.  As you get past the shock and fear in the first few months, and the numeous doctor appointments with all the new information and decisions to be made…. life does begin to slip back into normal rythems and the fear gets a little less and less.  We are 18 months NED and that is more than I had expected my first visit to this board. 

My husband was diagnosed stage 3c 19 months ago.  He had his PET upon initial discovery – it showed no spread.  He had sentinal node biopsy – they took 3 nodes and 1 came back positive.  He decided to have total lymph disection – they removed 42 additional nodes and 2 of those came back positive (micro mets).  He was placed on a study –  given either Ipi or Nivo (we don't know which) infusions for a year.  He has been NED since.  Poor guy has had a few skin biopsies (which came back negative) and he had a blood clot due to his port and frequent travel (he flies at least 2x a month) but he happily had his port removed 3 months ago – so that is not a concern any longer.

Every scan (3 month intervals for the first 2 years) is still surrounded with a great deal of anxiety.  That is just the new reality after a cancer diagnosis.  Remember that there are a lot of cancer surivial stories.  I try to think that we are going to be one of them.  As you get past the shock and fear in the first few months, and the numeous doctor appointments with all the new information and decisions to be made…. life does begin to slip back into normal rythems and the fear gets a little less and less.  We are 18 months NED and that is more than I had expected my first visit to this board. 

My husband was diagnosed stage 3c 19 months ago.  He had his PET upon initial discovery – it showed no spread.  He had sentinal node biopsy – they took 3 nodes and 1 came back positive.  He decided to have total lymph disection – they removed 42 additional nodes and 2 of those came back positive (micro mets).  He was placed on a study –  given either Ipi or Nivo (we don't know which) infusions for a year.  He has been NED since.  Poor guy has had a few skin biopsies (which came back negative) and he had a blood clot due to his port and frequent travel (he flies at least 2x a month) but he happily had his port removed 3 months ago – so that is not a concern any longer.

Every scan (3 month intervals for the first 2 years) is still surrounded with a great deal of anxiety.  That is just the new reality after a cancer diagnosis.  Remember that there are a lot of cancer surivial stories.  I try to think that we are going to be one of them.  As you get past the shock and fear in the first few months, and the numeous doctor appointments with all the new information and decisions to be made…. life does begin to slip back into normal rythems and the fear gets a little less and less.  We are 18 months NED and that is more than I had expected my first visit to this board.