Stage IV brain mets. Info and positive stories needed

This topic has 30 replies, 6 voices, and was last updated 12 years, 10 months ago by mombase.

Post

- October 22, 2011 at 2:33 pm
- Quote
AlisonC
Participant
Hi MPIP people,

I used to spend a lot of time here ( started trying to have a baby and it was easier to get some mel distance) but had hoped to return later this month to announce 10 years NED (which still might happen if my insurance company stops trying to dodge the scan fee and it goes ahead). Instead, I’m back looking for information on post-surgery options for a good friend and colleague who this week progressed to stage IV with 3 brain mets. He had a large primary (not sure of breslow) removed from his scalp and bilateral neck dissections for micro mets 2 years ago. GM-CSF since. Just this week, 3 small brain mets detected after sudden nausea and pain. No visceral mets according to the PET so they will resect 2 of the mets and do SRS (I believe) on the 3rd.

I’m so out of the loop on adjuvant treatments for stage IV Mel (which I promised myself I would never do….even after 10 years I am not complacent since my own stage III met came 9 years after my primary) so any advice you have on post-surgery options would be very welcome. Any positive outcome stories would also be very welcome I’m sure, to give him some all-important hope…..

Sorry to “take” when I haven’t been “giving” on this board much of late………

AlisonC
NED since 2001

Viewing 8 reply threads

Replies

- - October 22, 2011 at 2:47 pm
  - Quote
  shellebrownies
  Participant
  Post surgery options may be relatively limited as most trials require at least one measurable tumor as inclusion criteria and your friend will hopefully be considered NED after the treatments.
  
  However, if they are literally removing tumors (craniotomy), then they would have a sample that could be tested for the BRAF mutation, which would then make him eligible for Zelboraf. However, I don't know if that works well with blood/brain barrier.
  
  Yervoy might be another and perhaps better option, as it is an immune system booster and could have whole body effectiveness. And if he is NED when he starts the Yervoy, he should have time to allow the drug to work.
  
  Hopefully, this helps you and your friend! Best of luck to you both.
  
  Michelle, wife of Don
- - October 22, 2011 at 2:47 pm
  - Quote
  shellebrownies
  Participant
  Post surgery options may be relatively limited as most trials require at least one measurable tumor as inclusion criteria and your friend will hopefully be considered NED after the treatments.
  
  However, if they are literally removing tumors (craniotomy), then they would have a sample that could be tested for the BRAF mutation, which would then make him eligible for Zelboraf. However, I don't know if that works well with blood/brain barrier.
  
  Yervoy might be another and perhaps better option, as it is an immune system booster and could have whole body effectiveness. And if he is NED when he starts the Yervoy, he should have time to allow the drug to work.
  
  Hopefully, this helps you and your friend! Best of luck to you both.
  
  Michelle, wife of Don
- - October 22, 2011 at 2:47 pm
  - Quote
  shellebrownies
  Participant
  Post surgery options may be relatively limited as most trials require at least one measurable tumor as inclusion criteria and your friend will hopefully be considered NED after the treatments.
  
  However, if they are literally removing tumors (craniotomy), then they would have a sample that could be tested for the BRAF mutation, which would then make him eligible for Zelboraf. However, I don't know if that works well with blood/brain barrier.
  
  Yervoy might be another and perhaps better option, as it is an immune system booster and could have whole body effectiveness. And if he is NED when he starts the Yervoy, he should have time to allow the drug to work.
  
  Hopefully, this helps you and your friend! Best of luck to you both.
  
  Michelle, wife of Don
- - October 22, 2011 at 5:06 pm
  - Quote
  mombase
  Participant
  Hi, Alison,
  
  I had two brain tumors at different times. The first one was large (3cm) and by my brain stem. It turned out not to be melanoma and was a meningioma. The second tumor removed was melanoma. My onc surgeon and radiation surgeon practically begged me to do whole brain radiation. I did not want to do WBR if I did not have to. I am glad that I didn't. Three months later my scan showed a clear brain and I started Yervoy.
  
  I SO much think this is such a personal decision based on the person's history and speed of growth of other tumors. The SRS and resection sounds great…can Yervoy be the next step??
  
  BTW, I think you are giving even when you are posting a question!!
  
  Cristy, Stage IV
  - October 29, 2011 at 11:37 pm
    
    Quote
    azurliene
    Participant
    
    Hi Cristy,
    
    I am new to all of this (but so thankful for this forum as I know I will be needing/using it) – why no WBR if you don't have to? I'm so confused i thought that was the only way to make sure you get any micro melanoma cells hanging out in the brain?
    
    Also, would you do a 2nd craniotomy again vs gamma knifeif you would have the option? We can't decide which route with my dad – he has a 3cm…they haven't talked to us about stages – I am trying to research as much as possible but am on info overload a little right now andgetting confused…
    
    can Yervoy be used instead of WBR in some cases?
    
    Sorry for all of the questions – I wrote a post a little bit ago, but no one has responded yet…just stressed and scared
    
    Aften
  - October 30, 2011 at 6:19 am
    
    Quote
    mombase
    Participant
    
    Hi Aften! I was told in the beginning that many board members are out and about on the weekends, so you might get more responses starting Monday. I'm sorry you have to be going through this all! I was so overwhelmed in the beginning, however, the more information I have taken in, the more confident I have become in my decisions. I am not sure they are the best decisions for your dad, but they are for me. I definitely believe that you make the best decision with the information that you have, and don't look back!
    
    The reason that I had surgery on this most recent tumor was because the oncs were not sure if it was melanoma and they wanted the path report. My first brain tumor was not melanoma. Pathology was also able to do genetic testing on the tumor and determine that I was B-RAF positive (v600e), which opens up another treatment option. I did not do WBR because the risks go up with age and I was just willing to take the chance. WBR can only be administered once and I thought it might be wise to use it when I really need it. The radiation onc was onboard with this once I brought it up.
    
    Yervoy was first treatment option because as of the present, my lung and liver tumors have not gotten larger in the last three months. Yervoy is a slower acting drug which does indeed cross the blood brain barrier, so it did seem like the best plan of action for my case.
    
    Since your dad already had one melanoma in his brain, SRS followed by Yervoy might be a good plan. But make sure if the first tumor was not tested for gnenetic mutations that it is (if it is still available for testing). If not, that might be a reason to have this one surgically removed.
    
    Always feel free to ask ANY and ALL questions!! There are so many folks on this board with incredible experience and desire to help others. You have come to the right place!
    
    Cristy, Stage IV
  - October 31, 2011 at 7:50 pm
    
    Quote
    azurliene
    Participant
    
    Cristy,
    
    Thank you so much for taking the time to reply and for the info – I am already finding this forum is my outlet…I get consumed by reading the stories info and profiles, but I am so thankful to have the outlet for additional support and to lern of more current information and options. The general web and statistics were eating me alive – so refreshing to read some positive …and hopeful stories…
    
    Thanks again
  - October 31, 2011 at 11:07 pm
    
    Quote
    mombase
    Participant
    
    You are very welcome. Make sure you take time to just relax and forget about melanoma (I know, it's WAY easier said than done!)
    
    Cristy
  - October 31, 2011 at 11:07 pm
    
    Quote
    mombase
    Participant
    
    You are very welcome. Make sure you take time to just relax and forget about melanoma (I know, it's WAY easier said than done!)
    
    Cristy
  - October 31, 2011 at 11:07 pm
    
    Quote
    mombase
    Participant
    
    You are very welcome. Make sure you take time to just relax and forget about melanoma (I know, it's WAY easier said than done!)
    
    Cristy
  - October 31, 2011 at 7:50 pm
    
    Quote
    azurliene
    Participant
    
    Cristy,
    
    Thank you so much for taking the time to reply and for the info – I am already finding this forum is my outlet…I get consumed by reading the stories info and profiles, but I am so thankful to have the outlet for additional support and to lern of more current information and options. The general web and statistics were eating me alive – so refreshing to read some positive …and hopeful stories…
    
    Thanks again
  - October 31, 2011 at 7:50 pm
    
    Quote
    azurliene
    Participant
    
    Cristy,
    
    Thank you so much for taking the time to reply and for the info – I am already finding this forum is my outlet…I get consumed by reading the stories info and profiles, but I am so thankful to have the outlet for additional support and to lern of more current information and options. The general web and statistics were eating me alive – so refreshing to read some positive …and hopeful stories…
    
    Thanks again
  - October 30, 2011 at 6:19 am
    
    Quote
    mombase
    Participant
    
    Hi Aften! I was told in the beginning that many board members are out and about on the weekends, so you might get more responses starting Monday. I'm sorry you have to be going through this all! I was so overwhelmed in the beginning, however, the more information I have taken in, the more confident I have become in my decisions. I am not sure they are the best decisions for your dad, but they are for me. I definitely believe that you make the best decision with the information that you have, and don't look back!
    
    The reason that I had surgery on this most recent tumor was because the oncs were not sure if it was melanoma and they wanted the path report. My first brain tumor was not melanoma. Pathology was also able to do genetic testing on the tumor and determine that I was B-RAF positive (v600e), which opens up another treatment option. I did not do WBR because the risks go up with age and I was just willing to take the chance. WBR can only be administered once and I thought it might be wise to use it when I really need it. The radiation onc was onboard with this once I brought it up.
    
    Yervoy was first treatment option because as of the present, my lung and liver tumors have not gotten larger in the last three months. Yervoy is a slower acting drug which does indeed cross the blood brain barrier, so it did seem like the best plan of action for my case.
    
    Since your dad already had one melanoma in his brain, SRS followed by Yervoy might be a good plan. But make sure if the first tumor was not tested for gnenetic mutations that it is (if it is still available for testing). If not, that might be a reason to have this one surgically removed.
    
    Always feel free to ask ANY and ALL questions!! There are so many folks on this board with incredible experience and desire to help others. You have come to the right place!
    
    Cristy, Stage IV
  - October 30, 2011 at 6:19 am
    
    Quote
    mombase
    Participant
    
    Hi Aften! I was told in the beginning that many board members are out and about on the weekends, so you might get more responses starting Monday. I'm sorry you have to be going through this all! I was so overwhelmed in the beginning, however, the more information I have taken in, the more confident I have become in my decisions. I am not sure they are the best decisions for your dad, but they are for me. I definitely believe that you make the best decision with the information that you have, and don't look back!
    
    The reason that I had surgery on this most recent tumor was because the oncs were not sure if it was melanoma and they wanted the path report. My first brain tumor was not melanoma. Pathology was also able to do genetic testing on the tumor and determine that I was B-RAF positive (v600e), which opens up another treatment option. I did not do WBR because the risks go up with age and I was just willing to take the chance. WBR can only be administered once and I thought it might be wise to use it when I really need it. The radiation onc was onboard with this once I brought it up.
    
    Yervoy was first treatment option because as of the present, my lung and liver tumors have not gotten larger in the last three months. Yervoy is a slower acting drug which does indeed cross the blood brain barrier, so it did seem like the best plan of action for my case.
    
    Since your dad already had one melanoma in his brain, SRS followed by Yervoy might be a good plan. But make sure if the first tumor was not tested for gnenetic mutations that it is (if it is still available for testing). If not, that might be a reason to have this one surgically removed.
    
    Always feel free to ask ANY and ALL questions!! There are so many folks on this board with incredible experience and desire to help others. You have come to the right place!
    
    Cristy, Stage IV
  - October 29, 2011 at 11:37 pm
    
    Quote
    azurliene
    Participant
    
    Hi Cristy,
    
    I am new to all of this (but so thankful for this forum as I know I will be needing/using it) – why no WBR if you don't have to? I'm so confused i thought that was the only way to make sure you get any micro melanoma cells hanging out in the brain?
    
    Also, would you do a 2nd craniotomy again vs gamma knifeif you would have the option? We can't decide which route with my dad – he has a 3cm…they haven't talked to us about stages – I am trying to research as much as possible but am on info overload a little right now andgetting confused…
    
    can Yervoy be used instead of WBR in some cases?
    
    Sorry for all of the questions – I wrote a post a little bit ago, but no one has responded yet…just stressed and scared
    
    Aften
  - October 29, 2011 at 11:37 pm
    
    Quote
    azurliene
    Participant
    
    Hi Cristy,
    
    I am new to all of this (but so thankful for this forum as I know I will be needing/using it) – why no WBR if you don't have to? I'm so confused i thought that was the only way to make sure you get any micro melanoma cells hanging out in the brain?
    
    Also, would you do a 2nd craniotomy again vs gamma knifeif you would have the option? We can't decide which route with my dad – he has a 3cm…they haven't talked to us about stages – I am trying to research as much as possible but am on info overload a little right now andgetting confused…
    
    can Yervoy be used instead of WBR in some cases?
    
    Sorry for all of the questions – I wrote a post a little bit ago, but no one has responded yet…just stressed and scared
    
    Aften
- - October 22, 2011 at 5:06 pm
  - Quote
  mombase
  Participant
  Hi, Alison,
  
  I had two brain tumors at different times. The first one was large (3cm) and by my brain stem. It turned out not to be melanoma and was a meningioma. The second tumor removed was melanoma. My onc surgeon and radiation surgeon practically begged me to do whole brain radiation. I did not want to do WBR if I did not have to. I am glad that I didn't. Three months later my scan showed a clear brain and I started Yervoy.
  
  I SO much think this is such a personal decision based on the person's history and speed of growth of other tumors. The SRS and resection sounds great…can Yervoy be the next step??
  
  BTW, I think you are giving even when you are posting a question!!
  
  Cristy, Stage IV
- - October 22, 2011 at 5:06 pm
  - Quote
  mombase
  Participant
  Hi, Alison,
  
  I had two brain tumors at different times. The first one was large (3cm) and by my brain stem. It turned out not to be melanoma and was a meningioma. The second tumor removed was melanoma. My onc surgeon and radiation surgeon practically begged me to do whole brain radiation. I did not want to do WBR if I did not have to. I am glad that I didn't. Three months later my scan showed a clear brain and I started Yervoy.
  
  I SO much think this is such a personal decision based on the person's history and speed of growth of other tumors. The SRS and resection sounds great…can Yervoy be the next step??
  
  BTW, I think you are giving even when you are posting a question!!
  
  Cristy, Stage IV
- - October 22, 2011 at 5:27 pm
  - Quote
  lhaley
  Participant
  I'm also dealing with a brain met. One large 21mm and as of last mri it was showing bleeding about 1 cm. The SRS was done on Monday and am currently weaning from the steroids. The reason the crainectomy is waiting for a few weeks because it's so deep and they are trying to prevent permanent damage in the speech/language area. If I am stable in a few weeks they will give a little longer waiting for a response.
  
  We each present so differently that each case is dealt with differently. On Tuesday we met with my mel specialist and just opened the discussion systemically. I am b-raf positive. He gave me the numbers with Temador and also discussed the limited info that has come out in trials is brain mets with Yervoy and b-raf. The rest of my PET is still clear! Right now options were discussed and the first thought is to deal with the met right now.
  
  I was told that if I respond to the SRS and only dealing with the met (lots of ifs) the numbers come out about 80%. He told me that a crainectomy is acutally 90%. Of course once that met is eliminated then who knows what happens later. Right now I'm dealing with one thing, not worrying about adjunct right now.
  
  Make sure that your friend has a team that they trust. I have found that they have repeated the exact coversation several times with us. Right now we are just not hearing all facts and they are making sure that they will repeat as often as needed. Somebody seems to be calling me everyday and checking on me. I never thought I would be getting such personal care. It helps knowing someone is there to help. We travel a little over 2 hours each way.
  
  On this board we seem to go through a group of those with us. I hope your friend has a successful procedure.
  
  Linda
  - October 22, 2011 at 6:04 pm
    
    Quote
    killmel
    Participant
    
    Linda, I am amzed how calm you are & so matter of fact with what you are going through. If it was me,I would be a basket case! Good luck to you.
  - October 22, 2011 at 6:50 pm
    
    Quote
    lhaley
    Participant
    
    I have my moments. Have to admit I haven't been on the board as often as usual. I just have to believe…… and my husband is being the total basketcase for me.
    
    Right now watching my Clemson football game, sewing, sewing, sewing, have my grandbaby here, and dealing with a lot of denial! The last few days I've gotten a sense of calm. Have to tell you that in the past I've handled worse when I had other recurrances. The worse for me is the instant life changing that I've felt.
    
    Linda
  - October 22, 2011 at 6:50 pm
    
    Quote
    lhaley
    Participant
    
    I have my moments. Have to admit I haven't been on the board as often as usual. I just have to believe…… and my husband is being the total basketcase for me.
    
    Right now watching my Clemson football game, sewing, sewing, sewing, have my grandbaby here, and dealing with a lot of denial! The last few days I've gotten a sense of calm. Have to tell you that in the past I've handled worse when I had other recurrances. The worse for me is the instant life changing that I've felt.
    
    Linda
  - October 23, 2011 at 3:14 pm
    
    Quote
    jag
    Participant
    
    Linda, denial can be a very good thing, I used that (and lots of prayers to make it through nearly everything.
  - October 23, 2011 at 3:14 pm
    
    Quote
    jag
    Participant
    
    Linda, denial can be a very good thing, I used that (and lots of prayers to make it through nearly everything.
  - October 23, 2011 at 3:14 pm
    
    Quote
    jag
    Participant
    
    Linda, denial can be a very good thing, I used that (and lots of prayers to make it through nearly everything.
  - October 22, 2011 at 6:50 pm
    
    Quote
    lhaley
    Participant
    
    I have my moments. Have to admit I haven't been on the board as often as usual. I just have to believe…… and my husband is being the total basketcase for me.
    
    Right now watching my Clemson football game, sewing, sewing, sewing, have my grandbaby here, and dealing with a lot of denial! The last few days I've gotten a sense of calm. Have to tell you that in the past I've handled worse when I had other recurrances. The worse for me is the instant life changing that I've felt.
    
    Linda
  - October 22, 2011 at 6:04 pm
    
    Quote
    killmel
    Participant
    
    Linda, I am amzed how calm you are & so matter of fact with what you are going through. If it was me,I would be a basket case! Good luck to you.
  - October 22, 2011 at 6:04 pm
    
    Quote
    killmel
    Participant
    
    Linda, I am amzed how calm you are & so matter of fact with what you are going through. If it was me,I would be a basket case! Good luck to you.
- - October 22, 2011 at 5:27 pm
  - Quote
  lhaley
  Participant
  I'm also dealing with a brain met. One large 21mm and as of last mri it was showing bleeding about 1 cm. The SRS was done on Monday and am currently weaning from the steroids. The reason the crainectomy is waiting for a few weeks because it's so deep and they are trying to prevent permanent damage in the speech/language area. If I am stable in a few weeks they will give a little longer waiting for a response.
  
  We each present so differently that each case is dealt with differently. On Tuesday we met with my mel specialist and just opened the discussion systemically. I am b-raf positive. He gave me the numbers with Temador and also discussed the limited info that has come out in trials is brain mets with Yervoy and b-raf. The rest of my PET is still clear! Right now options were discussed and the first thought is to deal with the met right now.
  
  I was told that if I respond to the SRS and only dealing with the met (lots of ifs) the numbers come out about 80%. He told me that a crainectomy is acutally 90%. Of course once that met is eliminated then who knows what happens later. Right now I'm dealing with one thing, not worrying about adjunct right now.
  
  Make sure that your friend has a team that they trust. I have found that they have repeated the exact coversation several times with us. Right now we are just not hearing all facts and they are making sure that they will repeat as often as needed. Somebody seems to be calling me everyday and checking on me. I never thought I would be getting such personal care. It helps knowing someone is there to help. We travel a little over 2 hours each way.
  
  On this board we seem to go through a group of those with us. I hope your friend has a successful procedure.
  
  Linda
- - October 22, 2011 at 5:27 pm
  - Quote
  lhaley
  Participant
  I'm also dealing with a brain met. One large 21mm and as of last mri it was showing bleeding about 1 cm. The SRS was done on Monday and am currently weaning from the steroids. The reason the crainectomy is waiting for a few weeks because it's so deep and they are trying to prevent permanent damage in the speech/language area. If I am stable in a few weeks they will give a little longer waiting for a response.
  
  We each present so differently that each case is dealt with differently. On Tuesday we met with my mel specialist and just opened the discussion systemically. I am b-raf positive. He gave me the numbers with Temador and also discussed the limited info that has come out in trials is brain mets with Yervoy and b-raf. The rest of my PET is still clear! Right now options were discussed and the first thought is to deal with the met right now.
  
  I was told that if I respond to the SRS and only dealing with the met (lots of ifs) the numbers come out about 80%. He told me that a crainectomy is acutally 90%. Of course once that met is eliminated then who knows what happens later. Right now I'm dealing with one thing, not worrying about adjunct right now.
  
  Make sure that your friend has a team that they trust. I have found that they have repeated the exact coversation several times with us. Right now we are just not hearing all facts and they are making sure that they will repeat as often as needed. Somebody seems to be calling me everyday and checking on me. I never thought I would be getting such personal care. It helps knowing someone is there to help. We travel a little over 2 hours each way.
  
  On this board we seem to go through a group of those with us. I hope your friend has a successful procedure.
  
  Linda