Brain Mets

here is a great resource from an expert on brain mets:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.VEvx9_nF9SQ

here is a great resource from an expert on brain mets:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.VEvx9_nF9SQ

here is a great resource from an expert on brain mets:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.VEvx9_nF9SQ

More details are necessary to be able to really give good advice. I had 3 small mets 15 months ago and had cyberknife treatment that worked extremly well. There are a couple of different names of treatments using high dose radiation ( stereotatic treatments) , mine was called the cyber knife ( it was kind of like James Bond meets robotics). Hope this helps!!!! Ed

More details are necessary to be able to really give good advice. I had 3 small mets 15 months ago and had cyberknife treatment that worked extremly well. There are a couple of different names of treatments using high dose radiation ( stereotatic treatments) , mine was called the cyber knife ( it was kind of like James Bond meets robotics). Hope this helps!!!! Ed

More details are necessary to be able to really give good advice. I had 3 small mets 15 months ago and had cyberknife treatment that worked extremly well. There are a couple of different names of treatments using high dose radiation ( stereotatic treatments) , mine was called the cyber knife ( it was kind of like James Bond meets robotics). Hope this helps!!!! Ed

It showed up in brain, nowhere else? And no symptoms? We're they doing brain MRI as surveillance then? I haven't had to deal with brain mets but you'll get a lot of good advice here in terms of treatment…WBR or SRS etc… Wishing your mother & family the best!

It showed up in brain, nowhere else? And no symptoms? We're they doing brain MRI as surveillance then? I haven't had to deal with brain mets but you'll get a lot of good advice here in terms of treatment…WBR or SRS etc… Wishing your mother & family the best!

It showed up in brain, nowhere else? And no symptoms? We're they doing brain MRI as surveillance then? I haven't had to deal with brain mets but you'll get a lot of good advice here in terms of treatment…WBR or SRS etc… Wishing your mother & family the best!

If she has brain mets, she's no longer IIIC, but is now stage IV. By definition once there is a tumor at a distant site that is not in a regional lymph node, the patient is stage IV. I went from IIIB to IIIC in about a year and a half, then 3 months after getting to IIIC I became stave IV. 6 months later they found 7 tiny brain mets on an MRI that was done in preparation for trying to get into a clinical trial. I had no symptoms. At the time there was some concern that I may also have leptomeningeal disease (which may rapidly spread down into the spinal chord and is very scary) so I underwent 3 weeks of whole brain radiation, which worked well. At the same time I was recieving Yervoy (an immunotherapy for the tumors that were in the rest of my body. The Yervoy did nothing, but my brain was ok for another 6 moths, at which point they found 4 new brain mets. At that time I underwent a targeted radiation (mine was called Gamma Knife, which really is the same thing as Cyberknife, just a different company makes the machine). That worked well for a while but about 5 months later they found another 7 brain mets that were again treated with Gamma Knife. I have never had any symptoms from any of my brain mets, the first ones were discovered by chance and the rest on regular monitoring that occured given that I then had a history of brain mets. 

The nice thing is that you can get targeted radiation as often as is needed, which is in contrast to whole brain radiation, which typically you can only do once without high risk of more damage than good. 

Best of luck to you and your mom

-Eva

If she has brain mets, she's no longer IIIC, but is now stage IV. By definition once there is a tumor at a distant site that is not in a regional lymph node, the patient is stage IV. I went from IIIB to IIIC in about a year and a half, then 3 months after getting to IIIC I became stave IV. 6 months later they found 7 tiny brain mets on an MRI that was done in preparation for trying to get into a clinical trial. I had no symptoms. At the time there was some concern that I may also have leptomeningeal disease (which may rapidly spread down into the spinal chord and is very scary) so I underwent 3 weeks of whole brain radiation, which worked well. At the same time I was recieving Yervoy (an immunotherapy for the tumors that were in the rest of my body. The Yervoy did nothing, but my brain was ok for another 6 moths, at which point they found 4 new brain mets. At that time I underwent a targeted radiation (mine was called Gamma Knife, which really is the same thing as Cyberknife, just a different company makes the machine). That worked well for a while but about 5 months later they found another 7 brain mets that were again treated with Gamma Knife. I have never had any symptoms from any of my brain mets, the first ones were discovered by chance and the rest on regular monitoring that occured given that I then had a history of brain mets. 

The nice thing is that you can get targeted radiation as often as is needed, which is in contrast to whole brain radiation, which typically you can only do once without high risk of more damage than good. 

Best of luck to you and your mom

-Eva

If she has brain mets, she's no longer IIIC, but is now stage IV. By definition once there is a tumor at a distant site that is not in a regional lymph node, the patient is stage IV. I went from IIIB to IIIC in about a year and a half, then 3 months after getting to IIIC I became stave IV. 6 months later they found 7 tiny brain mets on an MRI that was done in preparation for trying to get into a clinical trial. I had no symptoms. At the time there was some concern that I may also have leptomeningeal disease (which may rapidly spread down into the spinal chord and is very scary) so I underwent 3 weeks of whole brain radiation, which worked well. At the same time I was recieving Yervoy (an immunotherapy for the tumors that were in the rest of my body. The Yervoy did nothing, but my brain was ok for another 6 moths, at which point they found 4 new brain mets. At that time I underwent a targeted radiation (mine was called Gamma Knife, which really is the same thing as Cyberknife, just a different company makes the machine). That worked well for a while but about 5 months later they found another 7 brain mets that were again treated with Gamma Knife. I have never had any symptoms from any of my brain mets, the first ones were discovered by chance and the rest on regular monitoring that occured given that I then had a history of brain mets. 

The nice thing is that you can get targeted radiation as often as is needed, which is in contrast to whole brain radiation, which typically you can only do once without high risk of more damage than good. 

Best of luck to you and your mom

-Eva

Oh brain mets, I know thee so well. I hope I can provide some insights in to your questions, which is likely much larger than treatment options.

Some background: my primary lesion was in 1998! Clark's level 3 on my neck. Wide excisions showed no immediate threat. However, back in those days, they recommended a Radical Neck Disectomy, essentially this would have removed almost every lymph node in my neck, literally I will never forget these words: "just in case it had spread".  We certainly didn't have the diagnostics that we do now. Interferon was also recommended. I wisely turned down both of these options. I do not feel that I would be here today had I accepted them.

Fast forward, 2013! Going about my day to day life, work, living, being. Suddenly cognitive skills crumbling all around me. Headaches, never been a headache girl and all the sudden minor headaches several times a week. Then things got really weird via what I call episodes. Nothing was consistant or continued past an hour, but things were odd. For me, these symptoms included:

~ not being able to write by pen. the letters wouldn't form, and they'd go off the page. trying to read back later was impossible because it was gibberish.
~ unable to discern hot/cold faucets in the house I've lived in for over a decade.
~ putting the car in drive, when i was trying to go in reverse
~unable to reach for a glass of water that was sitting right in front of me. I could see the glass, I knew I wanted it, but could not reach for it, let alone hold it if I did make my way to it.
~ spaciness. unable to focus
~ being menopausal, amped up hot flashes.
~ and then the headaches, the reallllly bad headaches that developed

MRI revealed 5 brain mets and 3 lung mets. I was so spaced out when I went for this test I almost forgot to tell the doc of my history of melanoma!! The 3 largest tumors were removed via surgery. the 2  smaller were successfully cyberknifed. The 3 lung mets literally vanished in 2 weeks using only Zelbarof. That was amazing for both me and my team to witness.

Unfortunately I have several aggressive and progressive mets in my brain as well as LMD. I won't know for a few weeks if the last 9 cyberknife  treatments worked on the 2 largest. As of 3 weeks ago, these lesions actually GREW 4x in 3 weeks, that is rapid.

I would gather that symptoms from the mets are determined by so many different factors…. where they are, the size, other issues such as LMD in my case interacting. It's probably countless.

Anway, just wanted to share some symptom stories as that was part of your question. If there is anything else I might be able to support with, just say the word. This forum is amazing.

Bless,
kali

Oh brain mets, I know thee so well. I hope I can provide some insights in to your questions, which is likely much larger than treatment options.

Some background: my primary lesion was in 1998! Clark's level 3 on my neck. Wide excisions showed no immediate threat. However, back in those days, they recommended a Radical Neck Disectomy, essentially this would have removed almost every lymph node in my neck, literally I will never forget these words: "just in case it had spread".  We certainly didn't have the diagnostics that we do now. Interferon was also recommended. I wisely turned down both of these options. I do not feel that I would be here today had I accepted them.

Fast forward, 2013! Going about my day to day life, work, living, being. Suddenly cognitive skills crumbling all around me. Headaches, never been a headache girl and all the sudden minor headaches several times a week. Then things got really weird via what I call episodes. Nothing was consistant or continued past an hour, but things were odd. For me, these symptoms included:

~ not being able to write by pen. the letters wouldn't form, and they'd go off the page. trying to read back later was impossible because it was gibberish.
~ unable to discern hot/cold faucets in the house I've lived in for over a decade.
~ putting the car in drive, when i was trying to go in reverse
~unable to reach for a glass of water that was sitting right in front of me. I could see the glass, I knew I wanted it, but could not reach for it, let alone hold it if I did make my way to it.
~ spaciness. unable to focus
~ being menopausal, amped up hot flashes.
~ and then the headaches, the reallllly bad headaches that developed

MRI revealed 5 brain mets and 3 lung mets. I was so spaced out when I went for this test I almost forgot to tell the doc of my history of melanoma!! The 3 largest tumors were removed via surgery. the 2  smaller were successfully cyberknifed. The 3 lung mets literally vanished in 2 weeks using only Zelbarof. That was amazing for both me and my team to witness.

Unfortunately I have several aggressive and progressive mets in my brain as well as LMD. I won't know for a few weeks if the last 9 cyberknife  treatments worked on the 2 largest. As of 3 weeks ago, these lesions actually GREW 4x in 3 weeks, that is rapid.

I would gather that symptoms from the mets are determined by so many different factors…. where they are, the size, other issues such as LMD in my case interacting. It's probably countless.

Anway, just wanted to share some symptom stories as that was part of your question. If there is anything else I might be able to support with, just say the word. This forum is amazing.

Bless,
kali

Oh brain mets, I know thee so well. I hope I can provide some insights in to your questions, which is likely much larger than treatment options.

Some background: my primary lesion was in 1998! Clark's level 3 on my neck. Wide excisions showed no immediate threat. However, back in those days, they recommended a Radical Neck Disectomy, essentially this would have removed almost every lymph node in my neck, literally I will never forget these words: "just in case it had spread".  We certainly didn't have the diagnostics that we do now. Interferon was also recommended. I wisely turned down both of these options. I do not feel that I would be here today had I accepted them.

Fast forward, 2013! Going about my day to day life, work, living, being. Suddenly cognitive skills crumbling all around me. Headaches, never been a headache girl and all the sudden minor headaches several times a week. Then things got really weird via what I call episodes. Nothing was consistant or continued past an hour, but things were odd. For me, these symptoms included:

~ not being able to write by pen. the letters wouldn't form, and they'd go off the page. trying to read back later was impossible because it was gibberish.
~ unable to discern hot/cold faucets in the house I've lived in for over a decade.
~ putting the car in drive, when i was trying to go in reverse
~unable to reach for a glass of water that was sitting right in front of me. I could see the glass, I knew I wanted it, but could not reach for it, let alone hold it if I did make my way to it.
~ spaciness. unable to focus
~ being menopausal, amped up hot flashes.
~ and then the headaches, the reallllly bad headaches that developed

MRI revealed 5 brain mets and 3 lung mets. I was so spaced out when I went for this test I almost forgot to tell the doc of my history of melanoma!! The 3 largest tumors were removed via surgery. the 2  smaller were successfully cyberknifed. The 3 lung mets literally vanished in 2 weeks using only Zelbarof. That was amazing for both me and my team to witness.

Unfortunately I have several aggressive and progressive mets in my brain as well as LMD. I won't know for a few weeks if the last 9 cyberknife  treatments worked on the 2 largest. As of 3 weeks ago, these lesions actually GREW 4x in 3 weeks, that is rapid.

I would gather that symptoms from the mets are determined by so many different factors…. where they are, the size, other issues such as LMD in my case interacting. It's probably countless.

Anway, just wanted to share some symptom stories as that was part of your question. If there is anything else I might be able to support with, just say the word. This forum is amazing.

Bless,
kali