Scared to Death – Stage IV???

Take a deep breath…now is a “good” time to have melanoma:). My 38 year old husband was dx with stage 4 melanoma in January 2011 and was given a 6-9 month prognosis. We have three young boys and thought e same thing. Thanks to 4 surgeries (small bowel resection, thoracotomy, craniotomy and gamma knife) and 2 new medicines…Yervoy and Zelboraf, 19 months later, he is not only alive, but had a scan last month that showed No Evidence of Disease! The first thing to do is to find a melanoma specialist. Do lots of research…Yervoy and Zelboraf are newest and greatest FDA approved treatments and there are many trials available, There are treatments and trials. You’ll see from these boards that melanoma is deadly…there and many widows and widowers who still post, but there are many, many patients posting here 3, 5, 7, and I think I’ve even seen 11 years after a stage 4 diagnosis. Hang in there and learn all you can.

Take a deep breath…now is a “good” time to have melanoma:). My 38 year old husband was dx with stage 4 melanoma in January 2011 and was given a 6-9 month prognosis. We have three young boys and thought e same thing. Thanks to 4 surgeries (small bowel resection, thoracotomy, craniotomy and gamma knife) and 2 new medicines…Yervoy and Zelboraf, 19 months later, he is not only alive, but had a scan last month that showed No Evidence of Disease! The first thing to do is to find a melanoma specialist. Do lots of research…Yervoy and Zelboraf are newest and greatest FDA approved treatments and there are many trials available, There are treatments and trials. You’ll see from these boards that melanoma is deadly…there and many widows and widowers who still post, but there are many, many patients posting here 3, 5, 7, and I think I’ve even seen 11 years after a stage 4 diagnosis. Hang in there and learn all you can.

Take a deep breath…now is a “good” time to have melanoma:). My 38 year old husband was dx with stage 4 melanoma in January 2011 and was given a 6-9 month prognosis. We have three young boys and thought e same thing. Thanks to 4 surgeries (small bowel resection, thoracotomy, craniotomy and gamma knife) and 2 new medicines…Yervoy and Zelboraf, 19 months later, he is not only alive, but had a scan last month that showed No Evidence of Disease! The first thing to do is to find a melanoma specialist. Do lots of research…Yervoy and Zelboraf are newest and greatest FDA approved treatments and there are many trials available, There are treatments and trials. You’ll see from these boards that melanoma is deadly…there and many widows and widowers who still post, but there are many, many patients posting here 3, 5, 7, and I think I’ve even seen 11 years after a stage 4 diagnosis. Hang in there and learn all you can.

It is normal to be scared, especially at first.  I was origninally diagnosed in 1979.  Became stage IV in 06!  I am having issues now but for 6 of the years I was doing really well!   We have others on the board that have been stage IV for 20 years!   There are many advances now that they didn't have before.   My advice is to find a melanoma specialist.

I realize this was not a good time for them to find melanoma right after your twins were born.  If you do a search on Jag you will find that his son was born a few months ago.  2 years ago he had many tumors and brain mets.  While you are making decisions on what to do search for some of the positive stories.

Linda

It is normal to be scared, especially at first.  I was origninally diagnosed in 1979.  Became stage IV in 06!  I am having issues now but for 6 of the years I was doing really well!   We have others on the board that have been stage IV for 20 years!   There are many advances now that they didn't have before.   My advice is to find a melanoma specialist.

I realize this was not a good time for them to find melanoma right after your twins were born.  If you do a search on Jag you will find that his son was born a few months ago.  2 years ago he had many tumors and brain mets.  While you are making decisions on what to do search for some of the positive stories.

Linda

It is normal to be scared, especially at first.  I was origninally diagnosed in 1979.  Became stage IV in 06!  I am having issues now but for 6 of the years I was doing really well!   We have others on the board that have been stage IV for 20 years!   There are many advances now that they didn't have before.   My advice is to find a melanoma specialist.

I realize this was not a good time for them to find melanoma right after your twins were born.  If you do a search on Jag you will find that his son was born a few months ago.  2 years ago he had many tumors and brain mets.  While you are making decisions on what to do search for some of the positive stories.

Linda

Congratulations on the twins ! It is possible that your lung spots are some other condition since you have had a cough. My husband’s recurrence was discovered by an X-ray for his ribs and back that showed a spot on his lung and he had no coughing or other related symptoms.

Pet scans are not very precise. Please get full lab reports on your groin node and see if they can do testing for mutations; these can be used to determine which treatment would be beneficial. I think it is important to get some facts and put things into perspective. You do have options. Search “NED” on this board and you will read many positive posts.

Keep up the swimming and enjoy those babies!

Jule

Congratulations on the twins ! It is possible that your lung spots are some other condition since you have had a cough. My husband’s recurrence was discovered by an X-ray for his ribs and back that showed a spot on his lung and he had no coughing or other related symptoms.

Pet scans are not very precise. Please get full lab reports on your groin node and see if they can do testing for mutations; these can be used to determine which treatment would be beneficial. I think it is important to get some facts and put things into perspective. You do have options. Search “NED” on this board and you will read many positive posts.

Keep up the swimming and enjoy those babies!

Jule

Congratulations on the twins ! It is possible that your lung spots are some other condition since you have had a cough. My husband’s recurrence was discovered by an X-ray for his ribs and back that showed a spot on his lung and he had no coughing or other related symptoms.

Pet scans are not very precise. Please get full lab reports on your groin node and see if they can do testing for mutations; these can be used to determine which treatment would be beneficial. I think it is important to get some facts and put things into perspective. You do have options. Search “NED” on this board and you will read many positive posts.

Keep up the swimming and enjoy those babies!

Jule

 

First of all, congratulations on the new little additions to your family!

I am sure this is incredibly distressing for you and your wife. I am also a previous Floridian who spent many many many of my growing up years on the East coast beach. As you wait for further news from the Dr, I just want to offer some tangible encouragement. I had an amelanotic ( non-pigmented & aggressive) melanoma mole removed in 2002. In 2005 I had my first distant metasasis ( way down in the muscle of my left calf). Our youngest was 2 when I was 1st diagnosed and is now 13 🙂  . Statistics can be so frightening. SO… here I am 10 years after mole removed, and 7 yrs after first metastasis. I have had recurrances, but I am alive and well with a recent clean PET scan. My suggestion to you is to research only to the extent you need to in order to ask intelligent & informed questions of your Drs…. but leave it at that. Then, once you have more info from your Dr, you can begin to make decisions. You will find many very helpful and compassionae folks on this board. They can offer advice abt treatment centers near you, and about the various treatmen decisions. I know I have seen some in FL who go to Moffat. I am sorry you are having to endure this sress and I will be praying for you and your family in the days to come.

Tina D

 

First of all, congratulations on the new little additions to your family!

I am sure this is incredibly distressing for you and your wife. I am also a previous Floridian who spent many many many of my growing up years on the East coast beach. As you wait for further news from the Dr, I just want to offer some tangible encouragement. I had an amelanotic ( non-pigmented & aggressive) melanoma mole removed in 2002. In 2005 I had my first distant metasasis ( way down in the muscle of my left calf). Our youngest was 2 when I was 1st diagnosed and is now 13 🙂  . Statistics can be so frightening. SO… here I am 10 years after mole removed, and 7 yrs after first metastasis. I have had recurrances, but I am alive and well with a recent clean PET scan. My suggestion to you is to research only to the extent you need to in order to ask intelligent & informed questions of your Drs…. but leave it at that. Then, once you have more info from your Dr, you can begin to make decisions. You will find many very helpful and compassionae folks on this board. They can offer advice abt treatment centers near you, and about the various treatmen decisions. I know I have seen some in FL who go to Moffat. I am sorry you are having to endure this sress and I will be praying for you and your family in the days to come.

Tina D

 

First of all, congratulations on the new little additions to your family!

I am sure this is incredibly distressing for you and your wife. I am also a previous Floridian who spent many many many of my growing up years on the East coast beach. As you wait for further news from the Dr, I just want to offer some tangible encouragement. I had an amelanotic ( non-pigmented & aggressive) melanoma mole removed in 2002. In 2005 I had my first distant metasasis ( way down in the muscle of my left calf). Our youngest was 2 when I was 1st diagnosed and is now 13 🙂  . Statistics can be so frightening. SO… here I am 10 years after mole removed, and 7 yrs after first metastasis. I have had recurrances, but I am alive and well with a recent clean PET scan. My suggestion to you is to research only to the extent you need to in order to ask intelligent & informed questions of your Drs…. but leave it at that. Then, once you have more info from your Dr, you can begin to make decisions. You will find many very helpful and compassionae folks on this board. They can offer advice abt treatment centers near you, and about the various treatmen decisions. I know I have seen some in FL who go to Moffat. I am sorry you are having to endure this sress and I will be praying for you and your family in the days to come.

Tina D

This disease is very scary.It is just in the last few years that melanoma victims now have a fighting chance .Do not over worry.That alone will steal time you need for your family.I beleive that it is no longer a death sentence.So many advances are in the pipeline.Having a melanoma specialist  is of the utmost priority.Will keep you in my prayers..Beat the Beast.   Al

This disease is very scary.It is just in the last few years that melanoma victims now have a fighting chance .Do not over worry.That alone will steal time you need for your family.I beleive that it is no longer a death sentence.So many advances are in the pipeline.Having a melanoma specialist  is of the utmost priority.Will keep you in my prayers..Beat the Beast.   Al

This disease is very scary.It is just in the last few years that melanoma victims now have a fighting chance .Do not over worry.That alone will steal time you need for your family.I beleive that it is no longer a death sentence.So many advances are in the pipeline.Having a melanoma specialist  is of the utmost priority.Will keep you in my prayers..Beat the Beast.   Al

The best thing you can do is come to this board for great advice and education – you found the board very early and will have a huge advantage as a result.  There are lots of options and though it s of course scary, remember that "statistics" do not have a lot of meaning in individual cases.  There ARE people who survive stage IV long term and there is no reason you won't be one of them.

 

Lori, caregiver to Will

The best thing you can do is come to this board for great advice and education – you found the board very early and will have a huge advantage as a result.  There are lots of options and though it s of course scary, remember that "statistics" do not have a lot of meaning in individual cases.  There ARE people who survive stage IV long term and there is no reason you won't be one of them.

 

Lori, caregiver to Will

The best thing you can do is come to this board for great advice and education – you found the board very early and will have a huge advantage as a result.  There are lots of options and though it s of course scary, remember that "statistics" do not have a lot of meaning in individual cases.  There ARE people who survive stage IV long term and there is no reason you won't be one of them.

 

Lori, caregiver to Will

Sorry to hear that you've joined our club, but welcome to the group!  This site is a great place to gain knowledge, meet others going through similar circumstances and ask questions.  In the early days it was truly my lifeline.  My one suggestion would be to make sure you're being seen by a melanoma specialist.  It makes a difference.I was diagnosed with melanoma of unknown primary at Stage IV in 2005 and I'm still here.   

I've been blessed with an immune system that is aiding in my fight, having few if any symptoms most of the time, cutting edge trial treatments that worked for me, a great team of melanoma specialists and a job with great medical benefits and vacation time.  My personal choice was to tell only a handful of people at work over the years.  In order to hang onto the job and benefits I've worked through all my treatments with the exception of IL-2 when I had to take 6 weeks off on short term disability.  I tried when ever possible to schedule doctor appointments, surgeries, radiation treatments, trial treatments and scans around my work schedule.  Most doctor and trial treatments (outpatient) I've been able to schedule at 7 or 7:30 AM, scans on Saturdays early am, surgeries I took vacation days, etc all to minimize sick time out of the office.  It was important to me, helped me to feel somewhat in control and though not easy during some treatments-  I pulled it off.  As you work your way through this battle you'll find a rythm to what works for you, your family and your medical team and what you're capable of handling. 

Over 7+ years out from my Stage IV diagnosis and I've been NED for the past 3 + years.  Hang in there! 

Rocco – IV since 2005, MDX-010 (ipi/yervoy) responder since 2009

Sorry to hear that you've joined our club, but welcome to the group!  This site is a great place to gain knowledge, meet others going through similar circumstances and ask questions.  In the early days it was truly my lifeline.  My one suggestion would be to make sure you're being seen by a melanoma specialist.  It makes a difference.I was diagnosed with melanoma of unknown primary at Stage IV in 2005 and I'm still here.   

I've been blessed with an immune system that is aiding in my fight, having few if any symptoms most of the time, cutting edge trial treatments that worked for me, a great team of melanoma specialists and a job with great medical benefits and vacation time.  My personal choice was to tell only a handful of people at work over the years.  In order to hang onto the job and benefits I've worked through all my treatments with the exception of IL-2 when I had to take 6 weeks off on short term disability.  I tried when ever possible to schedule doctor appointments, surgeries, radiation treatments, trial treatments and scans around my work schedule.  Most doctor and trial treatments (outpatient) I've been able to schedule at 7 or 7:30 AM, scans on Saturdays early am, surgeries I took vacation days, etc all to minimize sick time out of the office.  It was important to me, helped me to feel somewhat in control and though not easy during some treatments-  I pulled it off.  As you work your way through this battle you'll find a rythm to what works for you, your family and your medical team and what you're capable of handling. 

Over 7+ years out from my Stage IV diagnosis and I've been NED for the past 3 + years.  Hang in there! 

Rocco – IV since 2005, MDX-010 (ipi/yervoy) responder since 2009

Sorry to hear that you've joined our club, but welcome to the group!  This site is a great place to gain knowledge, meet others going through similar circumstances and ask questions.  In the early days it was truly my lifeline.  My one suggestion would be to make sure you're being seen by a melanoma specialist.  It makes a difference.I was diagnosed with melanoma of unknown primary at Stage IV in 2005 and I'm still here.   

I've been blessed with an immune system that is aiding in my fight, having few if any symptoms most of the time, cutting edge trial treatments that worked for me, a great team of melanoma specialists and a job with great medical benefits and vacation time.  My personal choice was to tell only a handful of people at work over the years.  In order to hang onto the job and benefits I've worked through all my treatments with the exception of IL-2 when I had to take 6 weeks off on short term disability.  I tried when ever possible to schedule doctor appointments, surgeries, radiation treatments, trial treatments and scans around my work schedule.  Most doctor and trial treatments (outpatient) I've been able to schedule at 7 or 7:30 AM, scans on Saturdays early am, surgeries I took vacation days, etc all to minimize sick time out of the office.  It was important to me, helped me to feel somewhat in control and though not easy during some treatments-  I pulled it off.  As you work your way through this battle you'll find a rythm to what works for you, your family and your medical team and what you're capable of handling. 

Over 7+ years out from my Stage IV diagnosis and I've been NED for the past 3 + years.  Hang in there! 

Rocco – IV since 2005, MDX-010 (ipi/yervoy) responder since 2009

Nope! I was diagnosed in June 2009 with stage 4 melanoma…mine was at the top of my lug area…kissing my superior vena cava. I was given 6-9 months….I have been NED ( no evidence at all of disease) for 2 years and 5 months…had scans last wednesday ( I am in the anti pd-1 trial at Moffitt) and I remain NED! Not even close to death!

Nope! I was diagnosed in June 2009 with stage 4 melanoma…mine was at the top of my lug area…kissing my superior vena cava. I was given 6-9 months….I have been NED ( no evidence at all of disease) for 2 years and 5 months…had scans last wednesday ( I am in the anti pd-1 trial at Moffitt) and I remain NED! Not even close to death!

Nope! I was diagnosed in June 2009 with stage 4 melanoma…mine was at the top of my lug area…kissing my superior vena cava. I was given 6-9 months….I have been NED ( no evidence at all of disease) for 2 years and 5 months…had scans last wednesday ( I am in the anti pd-1 trial at Moffitt) and I remain NED! Not even close to death!

I am sorry you are going through this.  It sounds as if you have been through quite a few health scares.  Maybe I ask how many other melanomas you had, and what stages they were?  Also, I did read at a time that lymphoma and melanoma may share link. 

I am sorry you are going through this.  It sounds as if you have been through quite a few health scares.  Maybe I ask how many other melanomas you had, and what stages they were?  Also, I did read at a time that lymphoma and melanoma may share link. 

I am sorry you are going through this.  It sounds as if you have been through quite a few health scares.  Maybe I ask how many other melanomas you had, and what stages they were?  Also, I did read at a time that lymphoma and melanoma may share link. 

I know this time is difficult because of the waiting.  But getting a correct diagnosis is key to getting the appropriate treatment.  Mutation studies will allow the doctors to narrow down the most effective treatment for you.  Doctors have boards available to them so that they can use the research, experience, and histories to help your case.  Stay positive and push the doctors to find those avenues.  They have a network and the US has wonderful centers for cancer treatment and also clinical studies.  Huntsman Cancer Institute and MD Anderson are two that I know about.  Together they have diagnosed and are currently treating my daughter with Interleuken-2 at Huntsman in Utah.  This week is the PET scan where we find out how effective it has been.  Carry on and remember that formula of faith is to hold on, work on, and see it through.  Bless you and your wonderful family!!

I know this time is difficult because of the waiting.  But getting a correct diagnosis is key to getting the appropriate treatment.  Mutation studies will allow the doctors to narrow down the most effective treatment for you.  Doctors have boards available to them so that they can use the research, experience, and histories to help your case.  Stay positive and push the doctors to find those avenues.  They have a network and the US has wonderful centers for cancer treatment and also clinical studies.  Huntsman Cancer Institute and MD Anderson are two that I know about.  Together they have diagnosed and are currently treating my daughter with Interleuken-2 at Huntsman in Utah.  This week is the PET scan where we find out how effective it has been.  Carry on and remember that formula of faith is to hold on, work on, and see it through.  Bless you and your wonderful family!!

I know this time is difficult because of the waiting.  But getting a correct diagnosis is key to getting the appropriate treatment.  Mutation studies will allow the doctors to narrow down the most effective treatment for you.  Doctors have boards available to them so that they can use the research, experience, and histories to help your case.  Stay positive and push the doctors to find those avenues.  They have a network and the US has wonderful centers for cancer treatment and also clinical studies.  Huntsman Cancer Institute and MD Anderson are two that I know about.  Together they have diagnosed and are currently treating my daughter with Interleuken-2 at Huntsman in Utah.  This week is the PET scan where we find out how effective it has been.  Carry on and remember that formula of faith is to hold on, work on, and see it through.  Bless you and your wonderful family!!

Hello young Florida Boy,  (I also grew up in Fla.  My family has been in Fla since the 1830's.)  I am a dark haired, dark skined, brown eyed boy that didn't burn even in the Florida sun (seldom wore a shirt)  Who knows why mel hits some and not others! 

    I had questions along the lines of yours in 2007 when I was given 2 to 6 months asprojected to live  after 3 1/2 years of being mis-diagnosed!.  I have been stage IV, without being NED since at least Feb 2007.  Is my death as imminent as the studies say?  Good question.  I still have that question, but it has not been my most pressing worry all the time since then.  You are welcome to read my profile and see my history.  I still don't know if Melanoma will get me in the end.  A horse accident did kill me in 2010, and the NICU wanted to transplant my organs (MELANOMA ORGANS?)!!!!  But I came back and still am not afraid of neither the sun nor horses.  Got to see some grand  kids grow up and even see a great grandkid come into the world.

     Statistics are for masses, not for individuals.  I don't know when nor what I will die from, but I am going to enjoy life as much as possible for as long as I can. 

     Now is the best time so far in histsory to have a melanoma diagnosis, though not as good as it will be in a few more years.  Each day wwe live, the more likely we are to see success against melanoma.

     Look at the onco-proteins and DNA mutations that your tumors might have and look at the main approved treatments (IL-2, Yervoy, Zelborf) and at the trials, especially the Anti PD-1 trials. (There are other chemo treatments that work on a very low peercentage of people as well.    As our Charlie says "work the problem".  He has been working the problem at the active stage Iv level for 16 years now.

     My main advice to Stage IV people is to make sure our spouses learn what then need to learn to live without us, and then to work the problem to  keep them from having to use what they have learned!

Hello young Florida Boy,  (I also grew up in Fla.  My family has been in Fla since the 1830's.)  I am a dark haired, dark skined, brown eyed boy that didn't burn even in the Florida sun (seldom wore a shirt)  Who knows why mel hits some and not others! 

    I had questions along the lines of yours in 2007 when I was given 2 to 6 months asprojected to live  after 3 1/2 years of being mis-diagnosed!.  I have been stage IV, without being NED since at least Feb 2007.  Is my death as imminent as the studies say?  Good question.  I still have that question, but it has not been my most pressing worry all the time since then.  You are welcome to read my profile and see my history.  I still don't know if Melanoma will get me in the end.  A horse accident did kill me in 2010, and the NICU wanted to transplant my organs (MELANOMA ORGANS?)!!!!  But I came back and still am not afraid of neither the sun nor horses.  Got to see some grand  kids grow up and even see a great grandkid come into the world.

     Statistics are for masses, not for individuals.  I don't know when nor what I will die from, but I am going to enjoy life as much as possible for as long as I can. 

     Now is the best time so far in histsory to have a melanoma diagnosis, though not as good as it will be in a few more years.  Each day wwe live, the more likely we are to see success against melanoma.

     Look at the onco-proteins and DNA mutations that your tumors might have and look at the main approved treatments (IL-2, Yervoy, Zelborf) and at the trials, especially the Anti PD-1 trials. (There are other chemo treatments that work on a very low peercentage of people as well.    As our Charlie says "work the problem".  He has been working the problem at the active stage Iv level for 16 years now.

     My main advice to Stage IV people is to make sure our spouses learn what then need to learn to live without us, and then to work the problem to  keep them from having to use what they have learned!

Hello young Florida Boy,  (I also grew up in Fla.  My family has been in Fla since the 1830's.)  I am a dark haired, dark skined, brown eyed boy that didn't burn even in the Florida sun (seldom wore a shirt)  Who knows why mel hits some and not others! 

    I had questions along the lines of yours in 2007 when I was given 2 to 6 months asprojected to live  after 3 1/2 years of being mis-diagnosed!.  I have been stage IV, without being NED since at least Feb 2007.  Is my death as imminent as the studies say?  Good question.  I still have that question, but it has not been my most pressing worry all the time since then.  You are welcome to read my profile and see my history.  I still don't know if Melanoma will get me in the end.  A horse accident did kill me in 2010, and the NICU wanted to transplant my organs (MELANOMA ORGANS?)!!!!  But I came back and still am not afraid of neither the sun nor horses.  Got to see some grand  kids grow up and even see a great grandkid come into the world.

     Statistics are for masses, not for individuals.  I don't know when nor what I will die from, but I am going to enjoy life as much as possible for as long as I can. 

     Now is the best time so far in histsory to have a melanoma diagnosis, though not as good as it will be in a few more years.  Each day wwe live, the more likely we are to see success against melanoma.

     Look at the onco-proteins and DNA mutations that your tumors might have and look at the main approved treatments (IL-2, Yervoy, Zelborf) and at the trials, especially the Anti PD-1 trials. (There are other chemo treatments that work on a very low peercentage of people as well.    As our Charlie says "work the problem".  He has been working the problem at the active stage Iv level for 16 years now.

     My main advice to Stage IV people is to make sure our spouses learn what then need to learn to live without us, and then to work the problem to  keep them from having to use what they have learned!

Buddy….Reading your post was like looking in the mirror… You are far from dead but naturally in full freak mode given this unpleasant reality that’s been forced upon you. Good news is you have found out what you have, thie number of spots is manageable and there are some great groundbreaking therapies available. After a few Melanoma spots were removed 10 yrs ago I thought I was on easy street. Had a routine scan after a blood infection 1.5 years ago and Dr’s found a lung Met which turned out to be melanoma. Cut it out with surgery through my side. Wasnt that bad. Felt like I took a good beating but couple of weeks later felt good. 6 mos after during 2nd series of follow up scans a brain met was found. Dr Jed Wolchuk from MSK in NYC started me on Yervoy and we had the Cyber Knife type radiation beam non invasive procedure done between either the 2-3 or 3-4 treatment. Just had my 1st follow up scans, body and brain and no evidence of disease (NED). Look into the Anti PD-1 trials also. I couldn’t get that one because I had the brain Met but hearing some great things about it. Keep calm, stay focused, enjoy the workouts and when you start to freak say a prayer listing at the things you are thankful for …Wife, beautiful healthy children, everything.. There isn’t enough room for the fear in your head anymore . Make sure you get a Melanoma Oncologist Specialist vs general Oncologist. Some great Dr’s available.. Get on top of this fast, learn about the options and partner with a great Quarterback/Dr and you got a good shot around fr a long time. Kiss the wife and kids and enjoy being a Dad.

Buddy….Reading your post was like looking in the mirror… You are far from dead but naturally in full freak mode given this unpleasant reality that’s been forced upon you. Good news is you have found out what you have, thie number of spots is manageable and there are some great groundbreaking therapies available. After a few Melanoma spots were removed 10 yrs ago I thought I was on easy street. Had a routine scan after a blood infection 1.5 years ago and Dr’s found a lung Met which turned out to be melanoma. Cut it out with surgery through my side. Wasnt that bad. Felt like I took a good beating but couple of weeks later felt good. 6 mos after during 2nd series of follow up scans a brain met was found. Dr Jed Wolchuk from MSK in NYC started me on Yervoy and we had the Cyber Knife type radiation beam non invasive procedure done between either the 2-3 or 3-4 treatment. Just had my 1st follow up scans, body and brain and no evidence of disease (NED). Look into the Anti PD-1 trials also. I couldn’t get that one because I had the brain Met but hearing some great things about it. Keep calm, stay focused, enjoy the workouts and when you start to freak say a prayer listing at the things you are thankful for …Wife, beautiful healthy children, everything.. There isn’t enough room for the fear in your head anymore . Make sure you get a Melanoma Oncologist Specialist vs general Oncologist. Some great Dr’s available.. Get on top of this fast, learn about the options and partner with a great Quarterback/Dr and you got a good shot around fr a long time. Kiss the wife and kids and enjoy being a Dad.

Buddy….Reading your post was like looking in the mirror… You are far from dead but naturally in full freak mode given this unpleasant reality that’s been forced upon you. Good news is you have found out what you have, thie number of spots is manageable and there are some great groundbreaking therapies available. After a few Melanoma spots were removed 10 yrs ago I thought I was on easy street. Had a routine scan after a blood infection 1.5 years ago and Dr’s found a lung Met which turned out to be melanoma. Cut it out with surgery through my side. Wasnt that bad. Felt like I took a good beating but couple of weeks later felt good. 6 mos after during 2nd series of follow up scans a brain met was found. Dr Jed Wolchuk from MSK in NYC started me on Yervoy and we had the Cyber Knife type radiation beam non invasive procedure done between either the 2-3 or 3-4 treatment. Just had my 1st follow up scans, body and brain and no evidence of disease (NED). Look into the Anti PD-1 trials also. I couldn’t get that one because I had the brain Met but hearing some great things about it. Keep calm, stay focused, enjoy the workouts and when you start to freak say a prayer listing at the things you are thankful for …Wife, beautiful healthy children, everything.. There isn’t enough room for the fear in your head anymore . Make sure you get a Melanoma Oncologist Specialist vs general Oncologist. Some great Dr’s available.. Get on top of this fast, learn about the options and partner with a great Quarterback/Dr and you got a good shot around fr a long time. Kiss the wife and kids and enjoy being a Dad.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

I was diagnosed with desmoplastic melanoma in August of 2012. It was a tumor on my head. I went to Moffitt Cancer Center. The tumor and one enlarged lymph node were removed in early October. The pathology showed that the tumor extended below the margin and therefore a second operation was done in early December. The balance of the tumor and all of the lymph nodes in my neck on one side were removed. The pathology showed all of the lymph nodes were clear of cancer cells. I then went for six weeks of radiation treatments on my head and neck. In March, I was given a PET scan and there were two pulmonary nodules spotted on my lung. On May 13, I was given a CT scan and the pulmonary nodules had increased in size and number. There is also a vague area on my liver. I had a lung biopsy on May 20th. I am waiting for a MRI, CT scan and a Doctor Appt on May 27.  I am a 65 year old male in good physical condition who feels great but is emotionally beaten up. I understand your feelings and can only tell you to not ever give up hope. There are times when things look bleak but you must gut it out.

We are in Birmingham, Alabama at UAB are there any great melanoma oncologist/specialist in Alabama. My brother was diagnosed with Stage 4 Melanoma yesterday July 17, 2018 Today we got CT results and his thoracic, lung and bones are metastatic. He doesn’t have any insurance so they aren’t being aggressive to get anything done. They have him scared that this is a death sentence. I’ve been doing research to try and get his hopes back up to fight this cancer. Any advice, info, knowledge would be gratefully appreciated.
Best regards,
Jason George