Metastacized Melanoma Multiple Sites including Brain

Hi I'm sorry to hear that you have joined this club. My mother was in your shoes and yes it's stressful but there are a lot more treatments out there today than ever before. Try to stay focussed and positive as you research. I would definately see a melanoma specialist, sounds like your headed in that direction and then just take things step by step. Melanoma is a deadly disease, I won't minimise that reality, but treatment decisions are really the key at this point. Take care and hang in there.

Nahmi from Melbourne

Hi I'm sorry to hear that you have joined this club. My mother was in your shoes and yes it's stressful but there are a lot more treatments out there today than ever before. Try to stay focussed and positive as you research. I would definately see a melanoma specialist, sounds like your headed in that direction and then just take things step by step. Melanoma is a deadly disease, I won't minimise that reality, but treatment decisions are really the key at this point. Take care and hang in there.

Nahmi from Melbourne

Hi I'm sorry to hear that you have joined this club. My mother was in your shoes and yes it's stressful but there are a lot more treatments out there today than ever before. Try to stay focussed and positive as you research. I would definately see a melanoma specialist, sounds like your headed in that direction and then just take things step by step. Melanoma is a deadly disease, I won't minimise that reality, but treatment decisions are really the key at this point. Take care and hang in there.

Nahmi from Melbourne

I second the motion on Kyle's comment except for a little addition. Optimally, you will call Farber (or another place) and get an appointment in the next couple of days.  But it may stretch longer than that with the need for record transfers and physician availability.  Don't let a little delay panic you.  Your husband is not in urgent critical condition.  A few more days is not going to make or break what can be a complete recovery eventually despite the spread that he has experienced.  The cancer in his system may have been developing a long time.  It's not going to all of a sudden engulf him.  I would be cautious, though, in starting immediate treatment now with radiation before you are in the hands of a melanoma expert doctor and team whom you trust.  You do not mention whom you are currently dealing with, "they."  Perhaps they are expert specialists, and you don't need to go further.  Reading between the lines, though, I imagine they are not.  Competent med people, including oncologists, but probably not melanoma specialists. 

My situation is similar in some ways to your husband's.  I'm 72, not 62, was diagnosed because of an x-ray to find out whether I had pneumonia, with a mass on the lung that was metastatic melanoma, unknown primary, and still unknown.  After an operation to remove the lower lobe of my right lung, I had a couple of months without disease when two brain tumors were discovered.  Instead of having them radiated immediately, my oncologist recommended my going on the drug, Yervoy, which is a standard of care for many Stage IV melanoma patients these days.   After more than a month on the drug, I had both tumors successfully radiated.  I would not have thought, if I were making the call myself,  of putting off getting rid of the tumors until I had been on Yervoy (ipilimumab or ipi) for six weeks, but I have been under the care of the team at the University of Michigan, a melanoma center of excellence, and that was their decision, which I confirmed for my own peace of mind with another center of excellence oncologist. Right now, as far as I know, I am cancer free and feeling very well. I'll get another set of scans next week and we will see if there is more to deal with right now or not. 

Before the lung lobe removal, I was whipsawed for a few weeks between differing opinions and a lot of frantic stress.  Looking back I think it is important for people who are new to this shock to realize that everything does not have to be done in a few days, that there is time to seek opinions, that the cancer is not going to spread irretrievably in a couple of weeks, and, most important, the enormous intensity of the diagnosis will pass and you can get on a course towards a better and less frightening future.  Stay on this site long enough and you will read stories of many fellow patients who have been where your husband has been or worse and years later are free of the disease or have it under control. 

All of us are cheering for you!!

I second the motion on Kyle's comment except for a little addition. Optimally, you will call Farber (or another place) and get an appointment in the next couple of days.  But it may stretch longer than that with the need for record transfers and physician availability.  Don't let a little delay panic you.  Your husband is not in urgent critical condition.  A few more days is not going to make or break what can be a complete recovery eventually despite the spread that he has experienced.  The cancer in his system may have been developing a long time.  It's not going to all of a sudden engulf him.  I would be cautious, though, in starting immediate treatment now with radiation before you are in the hands of a melanoma expert doctor and team whom you trust.  You do not mention whom you are currently dealing with, "they."  Perhaps they are expert specialists, and you don't need to go further.  Reading between the lines, though, I imagine they are not.  Competent med people, including oncologists, but probably not melanoma specialists. 

My situation is similar in some ways to your husband's.  I'm 72, not 62, was diagnosed because of an x-ray to find out whether I had pneumonia, with a mass on the lung that was metastatic melanoma, unknown primary, and still unknown.  After an operation to remove the lower lobe of my right lung, I had a couple of months without disease when two brain tumors were discovered.  Instead of having them radiated immediately, my oncologist recommended my going on the drug, Yervoy, which is a standard of care for many Stage IV melanoma patients these days.   After more than a month on the drug, I had both tumors successfully radiated.  I would not have thought, if I were making the call myself,  of putting off getting rid of the tumors until I had been on Yervoy (ipilimumab or ipi) for six weeks, but I have been under the care of the team at the University of Michigan, a melanoma center of excellence, and that was their decision, which I confirmed for my own peace of mind with another center of excellence oncologist. Right now, as far as I know, I am cancer free and feeling very well. I'll get another set of scans next week and we will see if there is more to deal with right now or not. 

Before the lung lobe removal, I was whipsawed for a few weeks between differing opinions and a lot of frantic stress.  Looking back I think it is important for people who are new to this shock to realize that everything does not have to be done in a few days, that there is time to seek opinions, that the cancer is not going to spread irretrievably in a couple of weeks, and, most important, the enormous intensity of the diagnosis will pass and you can get on a course towards a better and less frightening future.  Stay on this site long enough and you will read stories of many fellow patients who have been where your husband has been or worse and years later are free of the disease or have it under control. 

All of us are cheering for you!!

I second the motion on Kyle's comment except for a little addition. Optimally, you will call Farber (or another place) and get an appointment in the next couple of days.  But it may stretch longer than that with the need for record transfers and physician availability.  Don't let a little delay panic you.  Your husband is not in urgent critical condition.  A few more days is not going to make or break what can be a complete recovery eventually despite the spread that he has experienced.  The cancer in his system may have been developing a long time.  It's not going to all of a sudden engulf him.  I would be cautious, though, in starting immediate treatment now with radiation before you are in the hands of a melanoma expert doctor and team whom you trust.  You do not mention whom you are currently dealing with, "they."  Perhaps they are expert specialists, and you don't need to go further.  Reading between the lines, though, I imagine they are not.  Competent med people, including oncologists, but probably not melanoma specialists. 

My situation is similar in some ways to your husband's.  I'm 72, not 62, was diagnosed because of an x-ray to find out whether I had pneumonia, with a mass on the lung that was metastatic melanoma, unknown primary, and still unknown.  After an operation to remove the lower lobe of my right lung, I had a couple of months without disease when two brain tumors were discovered.  Instead of having them radiated immediately, my oncologist recommended my going on the drug, Yervoy, which is a standard of care for many Stage IV melanoma patients these days.   After more than a month on the drug, I had both tumors successfully radiated.  I would not have thought, if I were making the call myself,  of putting off getting rid of the tumors until I had been on Yervoy (ipilimumab or ipi) for six weeks, but I have been under the care of the team at the University of Michigan, a melanoma center of excellence, and that was their decision, which I confirmed for my own peace of mind with another center of excellence oncologist. Right now, as far as I know, I am cancer free and feeling very well. I'll get another set of scans next week and we will see if there is more to deal with right now or not. 

Before the lung lobe removal, I was whipsawed for a few weeks between differing opinions and a lot of frantic stress.  Looking back I think it is important for people who are new to this shock to realize that everything does not have to be done in a few days, that there is time to seek opinions, that the cancer is not going to spread irretrievably in a couple of weeks, and, most important, the enormous intensity of the diagnosis will pass and you can get on a course towards a better and less frightening future.  Stay on this site long enough and you will read stories of many fellow patients who have been where your husband has been or worse and years later are free of the disease or have it under control. 

All of us are cheering for you!!

I agree with that, don't rush into anything for the sake of rushing, as buffcody, says. Go for quality care — a melanoma specializist oncologist whose opinion you feel you can trust (if that's not already in place). Very good point.

The melanoma specialist is the one who can tell you the urgency of any next treatment step and arrange for those steps to happen. At that point you can know the timing (slow or fast) of whatever next steps are needed. 

Rooting for you.

I agree with that, don't rush into anything for the sake of rushing, as buffcody, says. Go for quality care — a melanoma specializist oncologist whose opinion you feel you can trust (if that's not already in place). Very good point.

The melanoma specialist is the one who can tell you the urgency of any next treatment step and arrange for those steps to happen. At that point you can know the timing (slow or fast) of whatever next steps are needed. 

Rooting for you.

I agree with that, don't rush into anything for the sake of rushing, as buffcody, says. Go for quality care — a melanoma specializist oncologist whose opinion you feel you can trust (if that's not already in place). Very good point.

The melanoma specialist is the one who can tell you the urgency of any next treatment step and arrange for those steps to happen. At that point you can know the timing (slow or fast) of whatever next steps are needed. 

Rooting for you.

Hi, Janet-

Dana Farber is one of the best melanoma centers in the country. The plan of care that the doctors recommend there sounds very good and quite state-of-the-art. The ipi treatment they are offering was only FDA approved 2 years ago and is already being more effective than anything we used to have. Cyberknife treatments are a huge advance over old fashioned radiation therapy. And, once the doctors have identified the DNA markers in your husband's tumor, even more advanced and effective treatments may be available. So rest assured that Dana Farber is doing the right thing and that Don is getting the best possible care.

I hope and expect that what your doctor really said is that left untreated, Don's tumors could prove fatal in 6 months or less. But the key is "left untreated"– Don is receiving highly specialized treatment so the numbers all change. But it would be unethical of your doctor not to advise you about the seriousness of Don's illness. I know it's a shock! I know it seems unbelievable and unbearable! But you and Don deserve to know the truth. And having a diagnosis of "6 months or less if the disease follows normal progression" may qualify him for at-home hospice care right now, which can be very, very helpful to both of you. One of the first things I learned is that hospice is NOT just for the last 2 or 3 weeks of life. Most of their work is done in the home to support the patient and the family right from the beginning. So be sure to talk to the social worker at Dana Farber on your next visit.

As you continue to read and post on this forum, you will see that there are a lot of people around here whose original prognosis was even worse than Don's. But they're still here– still alive and kickin'– years later. Melanoma research is advancing quickly. So don't panic. Don't despair. Keep Don's body has healthy as possible with good nutrition and moderate exercise. Make special efforts to get out and enjoy yourselves as often as possible. And both of you would benefit from some type of regular stress relief be it yoga, exercise, music, painting, or prayer. I just posted a message about the emotional roller coaster of being a caregiver on the "Off-Topic" forum. We all go through it– emotional highs and lows. It's normal and unavoidable. But having a positive mental attitude and appreciating each day together will go a long way towards helping Don beat this melanoma beast!    

. 

JANET, Hopefully I have my responses straight.  I have been working off-line in a word processor to keep from losing data when typing on-line and on several responses at a time.

      Regarding the 2 to 6 months statement. They are quoting statistics to you. Statistics are for a mass of objects, only indirectly related to an individual.

It is shocking to hear. I know, I heard it in 2007 when I went to stage IV. Went home and finally made up a written will.  As POW pointed out, this is quite true for untreated cases.   It is too often true for treated cases, but is not always true.

     I feel that we need to know the statistics and should use them to make sure our spouses/loved ones learn what they need to know about finances, insurance, bills, bank accounts, etc to be able to carry on if we don't survive this battle. One feels more control over what happens if they make the necessary plans for the negative side of the battle. Wish we had more control over everything else in this battle. This statement does not mean to quit learning and fighting. I worry much about my wife because she still refuses to look at the information she will need to live without me.

Regarding posting:

1.It can take a what seems to be an awfully long time for an entry to pop up on the board, give it a pause before repeating the entry attempt (This delay is why you see many double posts show up here.)

2. One can either start a new post for an update or can add to a previous post.  You will see at the top of the page the titles:  TOPIC POST DATE    and  LAST POST DATE   by clicking on either you can determine the sort order presented to you in that window.  I usually keep at least two windows open at a time, one for each sort.

The original program, written in the mid 1990's, only provided for the original posting date sort.

The new program initially only presented the last post date option.

We requested that both options be provided because people were bothered by seeing posts from people known to be dead at the top of the list if anyone commented on them (Last post sort).  There are both advantages and disadvantages to each sort.  With the number of people that have found us, the original sort order can cause ones post to be buried pages down in a short time  The last post date sort to a topic helps with the bringing of an older topic to the top of that sort and better consolidates ones input.  Keeping ones profile updated also helps one track others status with less review/searching of old posts..

The Florida Cancer center that I have heard the best about is Moffet in Tampa.  MDA has a branch in Orlando.

Dr Keith Flaherty in Boston is also in the forefront of Melanoma research and is well respected.

      One should have copies of all medical records relating to the Melanoma, i.e. blood tests, CT & PET scans, x-rays, radiology reports, operation and surgery notes, Pathology reports, etc. You will not have the tumor tissue paraffin block nor slides, but should learn where they can be obtained from as the cancer center may require them. I cut 6 weeks off the normal time by having the information on hand when I was told that it would take about 2 months to send me medical release paperwork to return to the center for them to send to each medical location/practitioner involved and to get their response.

     On the subject of delay and speed. I have spoken to many people in the chat room like the young lady that said to me, “Two months ago Mom was fine, out playing golf with friends with no problems. She was then diagnosed with melanoma and we buried her this week. How could this happen?"

While a short delay often will not change the course of events, each case can be different,  The less delay the better.

    In my case it is amazing that I am alive due to the delays my GP and the local surgeon generated. My GP mis-diagnosed me for over 3 ½ years on ten office visits. When a new GP sent me to a local general surgeon, he removed the malignant hemorrhoid (Pathology diagnosed it as a melanoma). He delayed, for two months, taking the wider margins and removing the additional two satellite melanoma tumors he had seen at the first visit. He provided essentially no follow-up and then when I found a huge rapidly growing groin lymph node, this general surgeon wanted me to wait over three months to even see me again. I refused to wait and saw another surgeon who removed the golf-ball sized black groin lymph node.

       By having copies of my records I shortened the time to get the major surgery by the melanoma specialist. After this operation I went from a clear PET to innumerable lung tumors within 6 weeks,

      Have they done any DNA mutation tests on the tumor tissue? (Particularly C-kit and B-RAF.)  The testing can take several weeks, but the information can direct the course of treatments. This should be done, especially for cases with an unknown primary.  The initial C-kit oncoprotein test can be done in a day or two  by any lab.  The DNA testing can take 3 weeks to a month.

     IL-2 and Yervoy (Ipi) have not been related to any specific type of melanoma. They are immunotherapy treatments that attempt to jump start the immune system into identifying and attacking tumors.  Both have about the same initial success rate.  IL-2 has the shorter time to tell if it is working and has the best record of providing what could be termed a "cure" to date (~5% cure rate, 15% partial response rate).  Yervoy has somewhat milder side-effects on most people than Il-2, but can also have extremely rough and permenant side-effects.  It also takes longer to tell  if it is working, sometimes up to a year to see results in the cases that it does work in.  Both of the immunotherapy treatments seem to enhance the usage of chemo's that have a lower benefit rate.

     In the past the first concern has been to attack the brain tumors first before looking hard at the body tumors. Most melanoma treatments did not cross the blood brain effectively. There have been some trials that show the newer treatments can attack some brain tumors. One factor is the speed of growth of ones tumors.  Cyberknife is often used to remove brain tumors quickly and then one can move to immunotherapy or chemo for systemic treatment.

. 

JANET, Hopefully I have my responses straight.  I have been working off-line in a word processor to keep from losing data when typing on-line and on several responses at a time.

      Regarding the 2 to 6 months statement. They are quoting statistics to you. Statistics are for a mass of objects, only indirectly related to an individual.

It is shocking to hear. I know, I heard it in 2007 when I went to stage IV. Went home and finally made up a written will.  As POW pointed out, this is quite true for untreated cases.   It is too often true for treated cases, but is not always true.

     I feel that we need to know the statistics and should use them to make sure our spouses/loved ones learn what they need to know about finances, insurance, bills, bank accounts, etc to be able to carry on if we don't survive this battle. One feels more control over what happens if they make the necessary plans for the negative side of the battle. Wish we had more control over everything else in this battle. This statement does not mean to quit learning and fighting. I worry much about my wife because she still refuses to look at the information she will need to live without me.

Regarding posting:

1.It can take a what seems to be an awfully long time for an entry to pop up on the board, give it a pause before repeating the entry attempt (This delay is why you see many double posts show up here.)

2. One can either start a new post for an update or can add to a previous post.  You will see at the top of the page the titles:  TOPIC POST DATE    and  LAST POST DATE   by clicking on either you can determine the sort order presented to you in that window.  I usually keep at least two windows open at a time, one for each sort.

The original program, written in the mid 1990's, only provided for the original posting date sort.

The new program initially only presented the last post date option.

We requested that both options be provided because people were bothered by seeing posts from people known to be dead at the top of the list if anyone commented on them (Last post sort).  There are both advantages and disadvantages to each sort.  With the number of people that have found us, the original sort order can cause ones post to be buried pages down in a short time  The last post date sort to a topic helps with the bringing of an older topic to the top of that sort and better consolidates ones input.  Keeping ones profile updated also helps one track others status with less review/searching of old posts..

The Florida Cancer center that I have heard the best about is Moffet in Tampa.  MDA has a branch in Orlando.

Dr Keith Flaherty in Boston is also in the forefront of Melanoma research and is well respected.

      One should have copies of all medical records relating to the Melanoma, i.e. blood tests, CT & PET scans, x-rays, radiology reports, operation and surgery notes, Pathology reports, etc. You will not have the tumor tissue paraffin block nor slides, but should learn where they can be obtained from as the cancer center may require them. I cut 6 weeks off the normal time by having the information on hand when I was told that it would take about 2 months to send me medical release paperwork to return to the center for them to send to each medical location/practitioner involved and to get their response.

     On the subject of delay and speed. I have spoken to many people in the chat room like the young lady that said to me, “Two months ago Mom was fine, out playing golf with friends with no problems. She was then diagnosed with melanoma and we buried her this week. How could this happen?"

While a short delay often will not change the course of events, each case can be different,  The less delay the better.

    In my case it is amazing that I am alive due to the delays my GP and the local surgeon generated. My GP mis-diagnosed me for over 3 ½ years on ten office visits. When a new GP sent me to a local general surgeon, he removed the malignant hemorrhoid (Pathology diagnosed it as a melanoma). He delayed, for two months, taking the wider margins and removing the additional two satellite melanoma tumors he had seen at the first visit. He provided essentially no follow-up and then when I found a huge rapidly growing groin lymph node, this general surgeon wanted me to wait over three months to even see me again. I refused to wait and saw another surgeon who removed the golf-ball sized black groin lymph node.

       By having copies of my records I shortened the time to get the major surgery by the melanoma specialist. After this operation I went from a clear PET to innumerable lung tumors within 6 weeks,

      Have they done any DNA mutation tests on the tumor tissue? (Particularly C-kit and B-RAF.)  The testing can take several weeks, but the information can direct the course of treatments. This should be done, especially for cases with an unknown primary.  The initial C-kit oncoprotein test can be done in a day or two  by any lab.  The DNA testing can take 3 weeks to a month.

     IL-2 and Yervoy (Ipi) have not been related to any specific type of melanoma. They are immunotherapy treatments that attempt to jump start the immune system into identifying and attacking tumors.  Both have about the same initial success rate.  IL-2 has the shorter time to tell if it is working and has the best record of providing what could be termed a "cure" to date (~5% cure rate, 15% partial response rate).  Yervoy has somewhat milder side-effects on most people than Il-2, but can also have extremely rough and permenant side-effects.  It also takes longer to tell  if it is working, sometimes up to a year to see results in the cases that it does work in.  Both of the immunotherapy treatments seem to enhance the usage of chemo's that have a lower benefit rate.

     In the past the first concern has been to attack the brain tumors first before looking hard at the body tumors. Most melanoma treatments did not cross the blood brain effectively. There have been some trials that show the newer treatments can attack some brain tumors. One factor is the speed of growth of ones tumors.  Cyberknife is often used to remove brain tumors quickly and then one can move to immunotherapy or chemo for systemic treatment.

. 

JANET, Hopefully I have my responses straight.  I have been working off-line in a word processor to keep from losing data when typing on-line and on several responses at a time.

      Regarding the 2 to 6 months statement. They are quoting statistics to you. Statistics are for a mass of objects, only indirectly related to an individual.

It is shocking to hear. I know, I heard it in 2007 when I went to stage IV. Went home and finally made up a written will.  As POW pointed out, this is quite true for untreated cases.   It is too often true for treated cases, but is not always true.

     I feel that we need to know the statistics and should use them to make sure our spouses/loved ones learn what they need to know about finances, insurance, bills, bank accounts, etc to be able to carry on if we don't survive this battle. One feels more control over what happens if they make the necessary plans for the negative side of the battle. Wish we had more control over everything else in this battle. This statement does not mean to quit learning and fighting. I worry much about my wife because she still refuses to look at the information she will need to live without me.

Regarding posting:

1.It can take a what seems to be an awfully long time for an entry to pop up on the board, give it a pause before repeating the entry attempt (This delay is why you see many double posts show up here.)

2. One can either start a new post for an update or can add to a previous post.  You will see at the top of the page the titles:  TOPIC POST DATE    and  LAST POST DATE   by clicking on either you can determine the sort order presented to you in that window.  I usually keep at least two windows open at a time, one for each sort.

The original program, written in the mid 1990's, only provided for the original posting date sort.

The new program initially only presented the last post date option.

We requested that both options be provided because people were bothered by seeing posts from people known to be dead at the top of the list if anyone commented on them (Last post sort).  There are both advantages and disadvantages to each sort.  With the number of people that have found us, the original sort order can cause ones post to be buried pages down in a short time  The last post date sort to a topic helps with the bringing of an older topic to the top of that sort and better consolidates ones input.  Keeping ones profile updated also helps one track others status with less review/searching of old posts..

The Florida Cancer center that I have heard the best about is Moffet in Tampa.  MDA has a branch in Orlando.

Dr Keith Flaherty in Boston is also in the forefront of Melanoma research and is well respected.

      One should have copies of all medical records relating to the Melanoma, i.e. blood tests, CT & PET scans, x-rays, radiology reports, operation and surgery notes, Pathology reports, etc. You will not have the tumor tissue paraffin block nor slides, but should learn where they can be obtained from as the cancer center may require them. I cut 6 weeks off the normal time by having the information on hand when I was told that it would take about 2 months to send me medical release paperwork to return to the center for them to send to each medical location/practitioner involved and to get their response.

     On the subject of delay and speed. I have spoken to many people in the chat room like the young lady that said to me, “Two months ago Mom was fine, out playing golf with friends with no problems. She was then diagnosed with melanoma and we buried her this week. How could this happen?"

While a short delay often will not change the course of events, each case can be different,  The less delay the better.

    In my case it is amazing that I am alive due to the delays my GP and the local surgeon generated. My GP mis-diagnosed me for over 3 ½ years on ten office visits. When a new GP sent me to a local general surgeon, he removed the malignant hemorrhoid (Pathology diagnosed it as a melanoma). He delayed, for two months, taking the wider margins and removing the additional two satellite melanoma tumors he had seen at the first visit. He provided essentially no follow-up and then when I found a huge rapidly growing groin lymph node, this general surgeon wanted me to wait over three months to even see me again. I refused to wait and saw another surgeon who removed the golf-ball sized black groin lymph node.

       By having copies of my records I shortened the time to get the major surgery by the melanoma specialist. After this operation I went from a clear PET to innumerable lung tumors within 6 weeks,

      Have they done any DNA mutation tests on the tumor tissue? (Particularly C-kit and B-RAF.)  The testing can take several weeks, but the information can direct the course of treatments. This should be done, especially for cases with an unknown primary.  The initial C-kit oncoprotein test can be done in a day or two  by any lab.  The DNA testing can take 3 weeks to a month.

     IL-2 and Yervoy (Ipi) have not been related to any specific type of melanoma. They are immunotherapy treatments that attempt to jump start the immune system into identifying and attacking tumors.  Both have about the same initial success rate.  IL-2 has the shorter time to tell if it is working and has the best record of providing what could be termed a "cure" to date (~5% cure rate, 15% partial response rate).  Yervoy has somewhat milder side-effects on most people than Il-2, but can also have extremely rough and permenant side-effects.  It also takes longer to tell  if it is working, sometimes up to a year to see results in the cases that it does work in.  Both of the immunotherapy treatments seem to enhance the usage of chemo's that have a lower benefit rate.

     In the past the first concern has been to attack the brain tumors first before looking hard at the body tumors. Most melanoma treatments did not cross the blood brain effectively. There have been some trials that show the newer treatments can attack some brain tumors. One factor is the speed of growth of ones tumors.  Cyberknife is often used to remove brain tumors quickly and then one can move to immunotherapy or chemo for systemic treatment.

Hi, Janet-

Dana Farber is one of the best melanoma centers in the country. The plan of care that the doctors recommend there sounds very good and quite state-of-the-art. The ipi treatment they are offering was only FDA approved 2 years ago and is already being more effective than anything we used to have. Cyberknife treatments are a huge advance over old fashioned radiation therapy. And, once the doctors have identified the DNA markers in your husband's tumor, even more advanced and effective treatments may be available. So rest assured that Dana Farber is doing the right thing and that Don is getting the best possible care.

I hope and expect that what your doctor really said is that left untreated, Don's tumors could prove fatal in 6 months or less. But the key is "left untreated"– Don is receiving highly specialized treatment so the numbers all change. But it would be unethical of your doctor not to advise you about the seriousness of Don's illness. I know it's a shock! I know it seems unbelievable and unbearable! But you and Don deserve to know the truth. And having a diagnosis of "6 months or less if the disease follows normal progression" may qualify him for at-home hospice care right now, which can be very, very helpful to both of you. One of the first things I learned is that hospice is NOT just for the last 2 or 3 weeks of life. Most of their work is done in the home to support the patient and the family right from the beginning. So be sure to talk to the social worker at Dana Farber on your next visit.

As you continue to read and post on this forum, you will see that there are a lot of people around here whose original prognosis was even worse than Don's. But they're still here– still alive and kickin'– years later. Melanoma research is advancing quickly. So don't panic. Don't despair. Keep Don's body has healthy as possible with good nutrition and moderate exercise. Make special efforts to get out and enjoy yourselves as often as possible. And both of you would benefit from some type of regular stress relief be it yoga, exercise, music, painting, or prayer. I just posted a message about the emotional roller coaster of being a caregiver on the "Off-Topic" forum. We all go through it– emotional highs and lows. It's normal and unavoidable. But having a positive mental attitude and appreciating each day together will go a long way towards helping Don beat this melanoma beast!    

Hi, Janet-

Dana Farber is one of the best melanoma centers in the country. The plan of care that the doctors recommend there sounds very good and quite state-of-the-art. The ipi treatment they are offering was only FDA approved 2 years ago and is already being more effective than anything we used to have. Cyberknife treatments are a huge advance over old fashioned radiation therapy. And, once the doctors have identified the DNA markers in your husband's tumor, even more advanced and effective treatments may be available. So rest assured that Dana Farber is doing the right thing and that Don is getting the best possible care.

I hope and expect that what your doctor really said is that left untreated, Don's tumors could prove fatal in 6 months or less. But the key is "left untreated"– Don is receiving highly specialized treatment so the numbers all change. But it would be unethical of your doctor not to advise you about the seriousness of Don's illness. I know it's a shock! I know it seems unbelievable and unbearable! But you and Don deserve to know the truth. And having a diagnosis of "6 months or less if the disease follows normal progression" may qualify him for at-home hospice care right now, which can be very, very helpful to both of you. One of the first things I learned is that hospice is NOT just for the last 2 or 3 weeks of life. Most of their work is done in the home to support the patient and the family right from the beginning. So be sure to talk to the social worker at Dana Farber on your next visit.

As you continue to read and post on this forum, you will see that there are a lot of people around here whose original prognosis was even worse than Don's. But they're still here– still alive and kickin'– years later. Melanoma research is advancing quickly. So don't panic. Don't despair. Keep Don's body has healthy as possible with good nutrition and moderate exercise. Make special efforts to get out and enjoy yourselves as often as possible. And both of you would benefit from some type of regular stress relief be it yoga, exercise, music, painting, or prayer. I just posted a message about the emotional roller coaster of being a caregiver on the "Off-Topic" forum. We all go through it– emotional highs and lows. It's normal and unavoidable. But having a positive mental attitude and appreciating each day together will go a long way towards helping Don beat this melanoma beast!    

Hi Janet, I feel your pain and fear. I am also relatively new to the site and this is my very first post.  I have been reading postings here on and off.  I am a caregiver to my husband and best friend for 32 years, who has been a Stage IV Metastatic Melanoma since September 2011.  He is currently on Zelboraf for ten months now, a very tired guy but living and results showed lesions shrinking, but just before that he had finished the four series of Yervoy that did not seemed to respond at the time according to scans and mri results.  Lesions on his spine, lungs and liver and a big lump on his skull got bigger.  He had radiations before and after Yervoy, before being on Zel.  It has been a very rough journey but my faith has kept me going and we are  very hopeful. Reading this site even with little time I have left after caregiving also keeps me alive. Thanks to everybody here.  I am learning a lot from all of you.  But I have yet to find out what is good to relieve neuropathy. Nothing seems to work at the moment.  That's what my husband is suffering so badly right now.  

 In 2004, Scott, my husband had a nodular melanoma removed on his right leg, a sentinel node tested negative to lymph nodes at the time. He had regular skin check ups and blood tests and occasional scans over the years. In Febriauary 2010, recurrence,  lumps grew on his right groin area like overnight, I mean fast.  Ultrasound /tests done and decision was made to have surgery. He had lymph nodes removed and four out of ten  were malignant.  He had Interferon treatments after that. Life was good for a little while then  May of 2011, another peculiar mole grew just right above the old scar on his right groin area, a biopsy done and was melanoma.  That was surgically removed and supposedly was going to start Yervoy treatment that summer.  His oncologist at the time thought there was no need because he just got cleaned up and scans showed no evidence of disease. But  in september , 2011,  the real journey started, he had back pains and few weeks after that had a hard time walking.  The disease had metasticized to his spine. Somehow, the radiation was decided and not cyberknife.  Then Yervoy was given and and in between infusions, he had been to the emergency twice, he had difficulty breathing.  Scans showed mets were in his lungs and liver.  The attending Onc at the time, (ours happened to be out of town), gave us the statistics of two to four months.  That's devastating!!!! …We have cried for weeks, .that is when I started reading this site and gave us glimpse of better hopes. We were not the only ones….and more people are surviving. His Onc called and encouraged us to finish the Yervoy and also informed us that Scott's BRAF mutation result and may qualify him for Zel.  This is where we are, ten months already of it.  His energy level is low and has a hard time walking but uses a cane or walker.  I use wheelchair for him going in and out of hospitals and for few  little trips. 

My best wishes and prayers  to you and Don.

Cielo

Hi, Cielo. I am glad you finally posted. You and your husband are full-fledged melanoma warriors and you have good reason to be optimistic about the new treatments that are available now. I am a little confused, though. You said that your real journey started in September 2011. When did your husband take the Yervoy?

Hi POW!  Yervoy didn't really start until December of 2011, but he had radiations on the spine september 2011 for 20 days and we commuted 18 miles in traffic everyday.  By then my husband couldn't walk already, so, I had difficulties handling things plus the stress knowing that the cancer was spreading in areas where surgery can't get to easily.   I meant the hardships seemed to just came down on us during that time. 

Hi, Cielo. 

I realize that you are new to posting here, so may I make a suggestion? Right now, your post is buried at the end of a long thread started by someone else. It would be easier for me and the other members to see and respond to your post if you start a new topic. To do that, click on the "Create New Topic" link directly above the list of posts. From left to right, look for "Forum" "Search" "Expand All" and then you will see "Create New Topic". Type your question or comment there and it will appear as it's own thread.

Meanwhile, if your husband received Yervoy in December 2011, he must have finished the course about a year ago. He had no problems in 2012, but now he has problems again and is considering Zelboraf. Is that correct? Remember, please post your reply under "Create New Topic" so we can all find it. 

Hi, Cielo. 

I realize that you are new to posting here, so may I make a suggestion? Right now, your post is buried at the end of a long thread started by someone else. It would be easier for me and the other members to see and respond to your post if you start a new topic. To do that, click on the "Create New Topic" link directly above the list of posts. From left to right, look for "Forum" "Search" "Expand All" and then you will see "Create New Topic". Type your question or comment there and it will appear as it's own thread.

Meanwhile, if your husband received Yervoy in December 2011, he must have finished the course about a year ago. He had no problems in 2012, but now he has problems again and is considering Zelboraf. Is that correct? Remember, please post your reply under "Create New Topic" so we can all find it. 

Hi, Cielo. 

I realize that you are new to posting here, so may I make a suggestion? Right now, your post is buried at the end of a long thread started by someone else. It would be easier for me and the other members to see and respond to your post if you start a new topic. To do that, click on the "Create New Topic" link directly above the list of posts. From left to right, look for "Forum" "Search" "Expand All" and then you will see "Create New Topic". Type your question or comment there and it will appear as it's own thread.

Meanwhile, if your husband received Yervoy in December 2011, he must have finished the course about a year ago. He had no problems in 2012, but now he has problems again and is considering Zelboraf. Is that correct? Remember, please post your reply under "Create New Topic" so we can all find it. 

Hi POW!  Yervoy didn't really start until December of 2011, but he had radiations on the spine september 2011 for 20 days and we commuted 18 miles in traffic everyday.  By then my husband couldn't walk already, so, I had difficulties handling things plus the stress knowing that the cancer was spreading in areas where surgery can't get to easily.   I meant the hardships seemed to just came down on us during that time. 

Hi POW!  Yervoy didn't really start until December of 2011, but he had radiations on the spine september 2011 for 20 days and we commuted 18 miles in traffic everyday.  By then my husband couldn't walk already, so, I had difficulties handling things plus the stress knowing that the cancer was spreading in areas where surgery can't get to easily.   I meant the hardships seemed to just came down on us during that time. 

Hi, Cielo. I am glad you finally posted. You and your husband are full-fledged melanoma warriors and you have good reason to be optimistic about the new treatments that are available now. I am a little confused, though. You said that your real journey started in September 2011. When did your husband take the Yervoy?

Hi, Cielo. I am glad you finally posted. You and your husband are full-fledged melanoma warriors and you have good reason to be optimistic about the new treatments that are available now. I am a little confused, though. You said that your real journey started in September 2011. When did your husband take the Yervoy?

Hi Janet, I feel your pain and fear. I am also relatively new to the site and this is my very first post.  I have been reading postings here on and off.  I am a caregiver to my husband and best friend for 32 years, who has been a Stage IV Metastatic Melanoma since September 2011.  He is currently on Zelboraf for ten months now, a very tired guy but living and results showed lesions shrinking, but just before that he had finished the four series of Yervoy that did not seemed to respond at the time according to scans and mri results.  Lesions on his spine, lungs and liver and a big lump on his skull got bigger.  He had radiations before and after Yervoy, before being on Zel.  It has been a very rough journey but my faith has kept me going and we are  very hopeful. Reading this site even with little time I have left after caregiving also keeps me alive. Thanks to everybody here.  I am learning a lot from all of you.  But I have yet to find out what is good to relieve neuropathy. Nothing seems to work at the moment.  That's what my husband is suffering so badly right now.  

 In 2004, Scott, my husband had a nodular melanoma removed on his right leg, a sentinel node tested negative to lymph nodes at the time. He had regular skin check ups and blood tests and occasional scans over the years. In Febriauary 2010, recurrence,  lumps grew on his right groin area like overnight, I mean fast.  Ultrasound /tests done and decision was made to have surgery. He had lymph nodes removed and four out of ten  were malignant.  He had Interferon treatments after that. Life was good for a little while then  May of 2011, another peculiar mole grew just right above the old scar on his right groin area, a biopsy done and was melanoma.  That was surgically removed and supposedly was going to start Yervoy treatment that summer.  His oncologist at the time thought there was no need because he just got cleaned up and scans showed no evidence of disease. But  in september , 2011,  the real journey started, he had back pains and few weeks after that had a hard time walking.  The disease had metasticized to his spine. Somehow, the radiation was decided and not cyberknife.  Then Yervoy was given and and in between infusions, he had been to the emergency twice, he had difficulty breathing.  Scans showed mets were in his lungs and liver.  The attending Onc at the time, (ours happened to be out of town), gave us the statistics of two to four months.  That's devastating!!!! …We have cried for weeks, .that is when I started reading this site and gave us glimpse of better hopes. We were not the only ones….and more people are surviving. His Onc called and encouraged us to finish the Yervoy and also informed us that Scott's BRAF mutation result and may qualify him for Zel.  This is where we are, ten months already of it.  His energy level is low and has a hard time walking but uses a cane or walker.  I use wheelchair for him going in and out of hospitals and for few  little trips. 

My best wishes and prayers  to you and Don.

Cielo

Hi Janet, I feel your pain and fear. I am also relatively new to the site and this is my very first post.  I have been reading postings here on and off.  I am a caregiver to my husband and best friend for 32 years, who has been a Stage IV Metastatic Melanoma since September 2011.  He is currently on Zelboraf for ten months now, a very tired guy but living and results showed lesions shrinking, but just before that he had finished the four series of Yervoy that did not seemed to respond at the time according to scans and mri results.  Lesions on his spine, lungs and liver and a big lump on his skull got bigger.  He had radiations before and after Yervoy, before being on Zel.  It has been a very rough journey but my faith has kept me going and we are  very hopeful. Reading this site even with little time I have left after caregiving also keeps me alive. Thanks to everybody here.  I am learning a lot from all of you.  But I have yet to find out what is good to relieve neuropathy. Nothing seems to work at the moment.  That's what my husband is suffering so badly right now.  

 In 2004, Scott, my husband had a nodular melanoma removed on his right leg, a sentinel node tested negative to lymph nodes at the time. He had regular skin check ups and blood tests and occasional scans over the years. In Febriauary 2010, recurrence,  lumps grew on his right groin area like overnight, I mean fast.  Ultrasound /tests done and decision was made to have surgery. He had lymph nodes removed and four out of ten  were malignant.  He had Interferon treatments after that. Life was good for a little while then  May of 2011, another peculiar mole grew just right above the old scar on his right groin area, a biopsy done and was melanoma.  That was surgically removed and supposedly was going to start Yervoy treatment that summer.  His oncologist at the time thought there was no need because he just got cleaned up and scans showed no evidence of disease. But  in september , 2011,  the real journey started, he had back pains and few weeks after that had a hard time walking.  The disease had metasticized to his spine. Somehow, the radiation was decided and not cyberknife.  Then Yervoy was given and and in between infusions, he had been to the emergency twice, he had difficulty breathing.  Scans showed mets were in his lungs and liver.  The attending Onc at the time, (ours happened to be out of town), gave us the statistics of two to four months.  That's devastating!!!! …We have cried for weeks, .that is when I started reading this site and gave us glimpse of better hopes. We were not the only ones….and more people are surviving. His Onc called and encouraged us to finish the Yervoy and also informed us that Scott's BRAF mutation result and may qualify him for Zel.  This is where we are, ten months already of it.  His energy level is low and has a hard time walking but uses a cane or walker.  I use wheelchair for him going in and out of hospitals and for few  little trips. 

My best wishes and prayers  to you and Don.

Cielo