Scared out of my mind

Hi,

I have only been diagnosed with stage 4 in February, had nothing before, no suspicious mole, just nothing. From your profile pic it looks as if we were about same age and have children.

The only thing I can say after 8 weeks is that it took a lot of time, and effort for me come to terms with what has happened and at the same time trying to find the strength you need to fight this. I am still working on that and I guess I will for a while.

For the first few weeks after the diagnosis I hardly remember anything as it was just pure horror between I could not believe it and I will die soon.

The hardest part is waiting for certain results and reports (I had to wait for 14 days for the pathology to finally learn I am BRAF positive).

For me the only thing that seems to help is take my time to understand things, most of all not trying to anticipate anything as I always tend to anticipate the worst possible. And very important: Do not read statistics as you do not know your condition exactly and as everybody is a special case anyway.

I can only say reading the posts and success stories in this forum and on the MIF has helped me a lot to understand that there are people who are surviving with stage 4.

What you also need to know that there is so much going on in melanoma research after 30 years of chemotherapy that never really brought good results for a majority of people affected. Pharmaceutical companies are investing a great deal of money to find new drugs and some of them are already accessible to us!

This is a very serious condition we are in but it is not forcibly the end! At least not yet! This is how I see it!

But I am sure there are much more experienced people that can give you more of an insight on how to live with melanoma for a long time.

Hi,

I have only been diagnosed with stage 4 in February, had nothing before, no suspicious mole, just nothing. From your profile pic it looks as if we were about same age and have children.

The only thing I can say after 8 weeks is that it took a lot of time, and effort for me come to terms with what has happened and at the same time trying to find the strength you need to fight this. I am still working on that and I guess I will for a while.

For the first few weeks after the diagnosis I hardly remember anything as it was just pure horror between I could not believe it and I will die soon.

The hardest part is waiting for certain results and reports (I had to wait for 14 days for the pathology to finally learn I am BRAF positive).

For me the only thing that seems to help is take my time to understand things, most of all not trying to anticipate anything as I always tend to anticipate the worst possible. And very important: Do not read statistics as you do not know your condition exactly and as everybody is a special case anyway.

I can only say reading the posts and success stories in this forum and on the MIF has helped me a lot to understand that there are people who are surviving with stage 4.

What you also need to know that there is so much going on in melanoma research after 30 years of chemotherapy that never really brought good results for a majority of people affected. Pharmaceutical companies are investing a great deal of money to find new drugs and some of them are already accessible to us!

This is a very serious condition we are in but it is not forcibly the end! At least not yet! This is how I see it!

But I am sure there are much more experienced people that can give you more of an insight on how to live with melanoma for a long time.

Hi,

I have only been diagnosed with stage 4 in February, had nothing before, no suspicious mole, just nothing. From your profile pic it looks as if we were about same age and have children.

The only thing I can say after 8 weeks is that it took a lot of time, and effort for me come to terms with what has happened and at the same time trying to find the strength you need to fight this. I am still working on that and I guess I will for a while.

For the first few weeks after the diagnosis I hardly remember anything as it was just pure horror between I could not believe it and I will die soon.

The hardest part is waiting for certain results and reports (I had to wait for 14 days for the pathology to finally learn I am BRAF positive).

For me the only thing that seems to help is take my time to understand things, most of all not trying to anticipate anything as I always tend to anticipate the worst possible. And very important: Do not read statistics as you do not know your condition exactly and as everybody is a special case anyway.

I can only say reading the posts and success stories in this forum and on the MIF has helped me a lot to understand that there are people who are surviving with stage 4.

What you also need to know that there is so much going on in melanoma research after 30 years of chemotherapy that never really brought good results for a majority of people affected. Pharmaceutical companies are investing a great deal of money to find new drugs and some of them are already accessible to us!

This is a very serious condition we are in but it is not forcibly the end! At least not yet! This is how I see it!

But I am sure there are much more experienced people that can give you more of an insight on how to live with melanoma for a long time.

I'm so sorry… I remember the first few weeks of stage IV diagnosis and it was horrible… But the good news is, my stage IV diagnosis was January 2013 and so far I've outlived every nasty prognosis I've been given… I've had a number of surgeries… Done a PD-1 trial and now responding to the braf/mek combo… I still work full time, exercise the same as I always did and only feel slightly limited by medication side effects, which unfortunately at times can be hard.

Met means metastases.. When the melanoma moves to parts of the body other than the origin or the lymph nodes closest to the origin.

NED is No Evidence of Disease… A place we all hope to be someday! It's the closest a melanoma patient will come to remission.

research research research… And see a specialist! I honestly believe these two things have saved my life countless times.

And come here for advice and some uplifting stories!

Don't google it… Honestly, it will just depress you and most of the research online is completely outdated because melanoma research has come so far in the last 2 years.

Fight and hope with every bit of you that you have!

I'm so sorry… I remember the first few weeks of stage IV diagnosis and it was horrible… But the good news is, my stage IV diagnosis was January 2013 and so far I've outlived every nasty prognosis I've been given… I've had a number of surgeries… Done a PD-1 trial and now responding to the braf/mek combo… I still work full time, exercise the same as I always did and only feel slightly limited by medication side effects, which unfortunately at times can be hard.

Met means metastases.. When the melanoma moves to parts of the body other than the origin or the lymph nodes closest to the origin.

NED is No Evidence of Disease… A place we all hope to be someday! It's the closest a melanoma patient will come to remission.

research research research… And see a specialist! I honestly believe these two things have saved my life countless times.

And come here for advice and some uplifting stories!

Don't google it… Honestly, it will just depress you and most of the research online is completely outdated because melanoma research has come so far in the last 2 years.

Fight and hope with every bit of you that you have!

I'm so sorry… I remember the first few weeks of stage IV diagnosis and it was horrible… But the good news is, my stage IV diagnosis was January 2013 and so far I've outlived every nasty prognosis I've been given… I've had a number of surgeries… Done a PD-1 trial and now responding to the braf/mek combo… I still work full time, exercise the same as I always did and only feel slightly limited by medication side effects, which unfortunately at times can be hard.

Met means metastases.. When the melanoma moves to parts of the body other than the origin or the lymph nodes closest to the origin.

NED is No Evidence of Disease… A place we all hope to be someday! It's the closest a melanoma patient will come to remission.

research research research… And see a specialist! I honestly believe these two things have saved my life countless times.

And come here for advice and some uplifting stories!

Don't google it… Honestly, it will just depress you and most of the research online is completely outdated because melanoma research has come so far in the last 2 years.

Fight and hope with every bit of you that you have!

Sorry you have had to join us, but you can find hope here. I have three young children myself was recently diagnosed stage 4 as well so I can understand what is going on in your head. Clearly it is not an easy thing to digest and the statistics are not encouraging. Remember that we are not statistics, but people.

Your question about some of the acronymns… met = metastasis (melanoma can metastasize almost anywhere… mine went to my small intestine); NED = No Evidence of Disease (I had surgery to remove the tumor in my intestine and there are currently no other signs of melanoma in my body so I am considered stage 4 NED).

Surgery seems to be the best way to "beat" melanoma, but there are more treatments available now if you wind up in the unrecetable camp.

Kevin

Sorry you have had to join us, but you can find hope here. I have three young children myself was recently diagnosed stage 4 as well so I can understand what is going on in your head. Clearly it is not an easy thing to digest and the statistics are not encouraging. Remember that we are not statistics, but people.

Your question about some of the acronymns… met = metastasis (melanoma can metastasize almost anywhere… mine went to my small intestine); NED = No Evidence of Disease (I had surgery to remove the tumor in my intestine and there are currently no other signs of melanoma in my body so I am considered stage 4 NED).

Surgery seems to be the best way to "beat" melanoma, but there are more treatments available now if you wind up in the unrecetable camp.

Kevin

Sorry you have had to join us, but you can find hope here. I have three young children myself was recently diagnosed stage 4 as well so I can understand what is going on in your head. Clearly it is not an easy thing to digest and the statistics are not encouraging. Remember that we are not statistics, but people.

Your question about some of the acronymns… met = metastasis (melanoma can metastasize almost anywhere… mine went to my small intestine); NED = No Evidence of Disease (I had surgery to remove the tumor in my intestine and there are currently no other signs of melanoma in my body so I am considered stage 4 NED).

Surgery seems to be the best way to "beat" melanoma, but there are more treatments available now if you wind up in the unrecetable camp.

Kevin

I too am sorry for your recent diagnosis and don't ever beat yourself up for being scared! It's a scary place to be indeed but you are in the right place for support. I am constantly amazed at the strong, positive, informed and encouraging Stage IV fighters here! Oh and I should also mention – those who are healthy even at Stage IV! Lean on them as much as you can but one more word of advice that we hear often around here. Seek out a melanoma specialist if you have not already. THAT alone can make all the difference in the world – even if it is just for some peace of mind and even if you have to travel to do so. I will be thinking about you as you go through this scary time.

I too am sorry for your recent diagnosis and don't ever beat yourself up for being scared! It's a scary place to be indeed but you are in the right place for support. I am constantly amazed at the strong, positive, informed and encouraging Stage IV fighters here! Oh and I should also mention – those who are healthy even at Stage IV! Lean on them as much as you can but one more word of advice that we hear often around here. Seek out a melanoma specialist if you have not already. THAT alone can make all the difference in the world – even if it is just for some peace of mind and even if you have to travel to do so. I will be thinking about you as you go through this scary time.

I too am sorry for your recent diagnosis and don't ever beat yourself up for being scared! It's a scary place to be indeed but you are in the right place for support. I am constantly amazed at the strong, positive, informed and encouraging Stage IV fighters here! Oh and I should also mention – those who are healthy even at Stage IV! Lean on them as much as you can but one more word of advice that we hear often around here. Seek out a melanoma specialist if you have not already. THAT alone can make all the difference in the world – even if it is just for some peace of mind and even if you have to travel to do so. I will be thinking about you as you go through this scary time.

Sorry to hear about your diagnosis.  Between diagnosis and initial treatment is one of the most challenging times emotionally and psychologically.  As time passes, you will adapt to the "new normal" of being a Stage IV patient.  While I've been extremely fortunate since my Stage IV diagnosis in July 2013, I consider myself one of the "healthy" patients Debbie mentioned (though I still have a long way to go before I can even have a conversation about the possibility of being NED).  I haven't missed much in terms of family time or work, etc. since my diagnosis.  While life is certainly different once you become a Stage IV patient, it can also be refreshingly the same in many ways.

Sorry to hear about your diagnosis.  Between diagnosis and initial treatment is one of the most challenging times emotionally and psychologically.  As time passes, you will adapt to the "new normal" of being a Stage IV patient.  While I've been extremely fortunate since my Stage IV diagnosis in July 2013, I consider myself one of the "healthy" patients Debbie mentioned (though I still have a long way to go before I can even have a conversation about the possibility of being NED).  I haven't missed much in terms of family time or work, etc. since my diagnosis.  While life is certainly different once you become a Stage IV patient, it can also be refreshingly the same in many ways.

Sorry to hear about your diagnosis.  Between diagnosis and initial treatment is one of the most challenging times emotionally and psychologically.  As time passes, you will adapt to the "new normal" of being a Stage IV patient.  While I've been extremely fortunate since my Stage IV diagnosis in July 2013, I consider myself one of the "healthy" patients Debbie mentioned (though I still have a long way to go before I can even have a conversation about the possibility of being NED).  I haven't missed much in terms of family time or work, etc. since my diagnosis.  While life is certainly different once you become a Stage IV patient, it can also be refreshingly the same in many ways.

You might want to see a oncologist that specializes in melanoma if you haven't already.

You might want to get tested if you are BRAF positive. If you are this only means certain medicines target the BRAF gene mutation thus you would be able to take them. A really good melanoma specialist would use the newer test that not only tests BRAF but about 5 other genes with the same biopsy material. I just learned about that reading on Vanderbilt TN website.

There are also the immunotherapy meds. Yervoy is currently the only one FDA approved however others are coming later this year.

Most importantly in my opinion is clinical trials. Depending on how you are feeling, the increase of the disease and so forth whether you want to start in a trial or with standard FDA approved treatment. The FDA treatments can be started relatively quickly depending on your insurance whereas some trials if they are currently going on then the shortest I have seen is 2 weeks but if the trials are still not ready it can be months or never. However the better trials tend to have the treatments work better than what is currently FDA approved. For example you mentioned the radiation oncologist. There is a good article on this blog about how radiation combined with Yervoy is way more successful and someone can correct me but I believe if the Yervoy is started after the radiation is completed (like within 48 hours) then it does not have to be a trial but I could be wrong. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

I hope that helps. Many people here were stage 4 and have been NED for years. I'm not one of them YET but never give up hope.

You might want to see a oncologist that specializes in melanoma if you haven't already.

You might want to get tested if you are BRAF positive. If you are this only means certain medicines target the BRAF gene mutation thus you would be able to take them. A really good melanoma specialist would use the newer test that not only tests BRAF but about 5 other genes with the same biopsy material. I just learned about that reading on Vanderbilt TN website.

There are also the immunotherapy meds. Yervoy is currently the only one FDA approved however others are coming later this year.

Most importantly in my opinion is clinical trials. Depending on how you are feeling, the increase of the disease and so forth whether you want to start in a trial or with standard FDA approved treatment. The FDA treatments can be started relatively quickly depending on your insurance whereas some trials if they are currently going on then the shortest I have seen is 2 weeks but if the trials are still not ready it can be months or never. However the better trials tend to have the treatments work better than what is currently FDA approved. For example you mentioned the radiation oncologist. There is a good article on this blog about how radiation combined with Yervoy is way more successful and someone can correct me but I believe if the Yervoy is started after the radiation is completed (like within 48 hours) then it does not have to be a trial but I could be wrong. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

I hope that helps. Many people here were stage 4 and have been NED for years. I'm not one of them YET but never give up hope.

You might want to see a oncologist that specializes in melanoma if you haven't already.

You might want to get tested if you are BRAF positive. If you are this only means certain medicines target the BRAF gene mutation thus you would be able to take them. A really good melanoma specialist would use the newer test that not only tests BRAF but about 5 other genes with the same biopsy material. I just learned about that reading on Vanderbilt TN website.

There are also the immunotherapy meds. Yervoy is currently the only one FDA approved however others are coming later this year.

Most importantly in my opinion is clinical trials. Depending on how you are feeling, the increase of the disease and so forth whether you want to start in a trial or with standard FDA approved treatment. The FDA treatments can be started relatively quickly depending on your insurance whereas some trials if they are currently going on then the shortest I have seen is 2 weeks but if the trials are still not ready it can be months or never. However the better trials tend to have the treatments work better than what is currently FDA approved. For example you mentioned the radiation oncologist. There is a good article on this blog about how radiation combined with Yervoy is way more successful and someone can correct me but I believe if the Yervoy is started after the radiation is completed (like within 48 hours) then it does not have to be a trial but I could be wrong. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/ipi-and-radiationa-good-combo-for.html

I hope that helps. Many people here were stage 4 and have been NED for years. I'm not one of them YET but never give up hope.

So sorry you have to be here, but it is a great place to get good, solid information and a lot of support.  I went and checked your profile, and I'm a bit confused.  It said your initial lesion was just 1mm but you had 24 lymph nodes removed and they were all positive?  Can you provide a little more information?  Do you have your pathology reports, and if so, could you copy them here or on your profile?  That might give some folks a little better idea of how to help.  Where are you having treatment?  There are several great melanoma centers in California, so I'm in hopes that is where your doctors are located.

Tell us more, but in the meantime, take deep breaths and try not to panic.  And don't Google melanoma! Those outdated statistics will do you no good!

So sorry you have to be here, but it is a great place to get good, solid information and a lot of support.  I went and checked your profile, and I'm a bit confused.  It said your initial lesion was just 1mm but you had 24 lymph nodes removed and they were all positive?  Can you provide a little more information?  Do you have your pathology reports, and if so, could you copy them here or on your profile?  That might give some folks a little better idea of how to help.  Where are you having treatment?  There are several great melanoma centers in California, so I'm in hopes that is where your doctors are located.

Tell us more, but in the meantime, take deep breaths and try not to panic.  And don't Google melanoma! Those outdated statistics will do you no good!

So sorry you have to be here, but it is a great place to get good, solid information and a lot of support.  I went and checked your profile, and I'm a bit confused.  It said your initial lesion was just 1mm but you had 24 lymph nodes removed and they were all positive?  Can you provide a little more information?  Do you have your pathology reports, and if so, could you copy them here or on your profile?  That might give some folks a little better idea of how to help.  Where are you having treatment?  There are several great melanoma centers in California, so I'm in hopes that is where your doctors are located.

Tell us more, but in the meantime, take deep breaths and try not to panic.  And don't Google melanoma! Those outdated statistics will do you no good!

I recommend asking as man questions as possible. Keep a notebook handy because no one can remember everything that comes up daily before you see your doctor. Keep notes on all the visits. We learned also to ask before you start a treatment could this disquality me for another treatment later. For example some clinical trials will want you to be 90 days clean before you can start. The main thing to remember is you will never make a wrong decision on what you decide to do. That one statement made such an impact on me that it helped everyday. Before that i used to wonder " what if" or maybe i should have taken curtain #2. No one could or would have been able to say well the other road would have been better and no one has that crystal ball. So make your best executive decision on what you can learn by asking questions and taking notes and then dont look back keep running and fighting. The last thing is to never loose site of is " quality of life " . Enjoy each day and good luck. 

I recommend asking as man questions as possible. Keep a notebook handy because no one can remember everything that comes up daily before you see your doctor. Keep notes on all the visits. We learned also to ask before you start a treatment could this disquality me for another treatment later. For example some clinical trials will want you to be 90 days clean before you can start. The main thing to remember is you will never make a wrong decision on what you decide to do. That one statement made such an impact on me that it helped everyday. Before that i used to wonder " what if" or maybe i should have taken curtain #2. No one could or would have been able to say well the other road would have been better and no one has that crystal ball. So make your best executive decision on what you can learn by asking questions and taking notes and then dont look back keep running and fighting. The last thing is to never loose site of is " quality of life " . Enjoy each day and good luck. 

I recommend asking as man questions as possible. Keep a notebook handy because no one can remember everything that comes up daily before you see your doctor. Keep notes on all the visits. We learned also to ask before you start a treatment could this disquality me for another treatment later. For example some clinical trials will want you to be 90 days clean before you can start. The main thing to remember is you will never make a wrong decision on what you decide to do. That one statement made such an impact on me that it helped everyday. Before that i used to wonder " what if" or maybe i should have taken curtain #2. No one could or would have been able to say well the other road would have been better and no one has that crystal ball. So make your best executive decision on what you can learn by asking questions and taking notes and then dont look back keep running and fighting. The last thing is to never loose site of is " quality of life " . Enjoy each day and good luck.