› Forums › General Melanoma Community › Brain Tumors vs No Brain Tumors?
- This topic has 54 replies, 12 voices, and was last updated 11 years, 9 months ago by
concernedaughter2011.
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- October 9, 2011 at 3:10 pm
I know many out there have never had any Brain Tumors, but others of us, like myself, have had Brain Tumors (One removed via Craniotimy , the other removed via Gamma Knife).
I'm assuming that having Brain Tumors/had Brain Tumors is worse than those out there who have never had any Brain Tumors. Are getting Brain Tumors as easy to get as other tumors in your organs/body parts, or is it tougher for the cancer to travel to the brain, so if you are lucky enough to never get Brain Tumors, you're a lucky one, etc?
I know many out there have never had any Brain Tumors, but others of us, like myself, have had Brain Tumors (One removed via Craniotimy , the other removed via Gamma Knife).
I'm assuming that having Brain Tumors/had Brain Tumors is worse than those out there who have never had any Brain Tumors. Are getting Brain Tumors as easy to get as other tumors in your organs/body parts, or is it tougher for the cancer to travel to the brain, so if you are lucky enough to never get Brain Tumors, you're a lucky one, etc?
Are there any reports/data out there that proves having Brain Tumors in the past, or currently, that we are less likely to survive, than those out there who have never had Brain Tumors? I'm assuming there is, but I'm still just stuck on this end of life rut I'm stuck in, wondering how many years I have left if I'm lucky, and if no new Brain Tumors come back to haunt me again.
I'm just not ready to accept living everyday happy as can be, happy to be on this earth, I'm still stuck in this I'm going to die before I'm 40 unless I'm extremely lucky.
I know there's plenty of Stage IV survivors out there, but did many of them have Brain Tumors, or were they the lucky ones to only have regular body tumors, and never touched the Brain? I know none of us have control over how long we're here, but I am hoping that mine will be 10+ years, just to see my kids grow up, but I don't feel that the treatments out there will give me that (I'm BRAF negative, so right there I lose a few treatments/drugs).
- Replies
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- October 9, 2011 at 3:36 pm
Big hugs. I cannot offer any help but I can tell you I relate to your anxiety. I am newly convinced I have brain tumors. Driving myself crazy. I have had ringing in my ears for over 2wks now which could mean a bunch of things, but my thoughts of course tell me brain tumors *sigh*. I quit taking aspirin and no help. I haven't had an MRI for 10mos. and my next CT is not due until Dec. 9th. Of course, the liver mets that were stable last scan are growing too (in my thoughts). This disease is ridiculous. So….I whine with you (hug).
Karin
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- October 9, 2011 at 3:36 pm
Big hugs. I cannot offer any help but I can tell you I relate to your anxiety. I am newly convinced I have brain tumors. Driving myself crazy. I have had ringing in my ears for over 2wks now which could mean a bunch of things, but my thoughts of course tell me brain tumors *sigh*. I quit taking aspirin and no help. I haven't had an MRI for 10mos. and my next CT is not due until Dec. 9th. Of course, the liver mets that were stable last scan are growing too (in my thoughts). This disease is ridiculous. So….I whine with you (hug).
Karin
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- October 9, 2011 at 3:36 pm
Big hugs. I cannot offer any help but I can tell you I relate to your anxiety. I am newly convinced I have brain tumors. Driving myself crazy. I have had ringing in my ears for over 2wks now which could mean a bunch of things, but my thoughts of course tell me brain tumors *sigh*. I quit taking aspirin and no help. I haven't had an MRI for 10mos. and my next CT is not due until Dec. 9th. Of course, the liver mets that were stable last scan are growing too (in my thoughts). This disease is ridiculous. So….I whine with you (hug).
Karin
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- October 9, 2011 at 3:50 pm
Search for CaroleK or Carole. She doesn't come to the board often anymore. There are some posts from her that would encourage you as she has is a survivor of ten years and had brain tumors and I think lung tumors. I think you could use that boost of positivity that is her journey. Stay strong.
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- October 9, 2011 at 3:50 pm
Search for CaroleK or Carole. She doesn't come to the board often anymore. There are some posts from her that would encourage you as she has is a survivor of ten years and had brain tumors and I think lung tumors. I think you could use that boost of positivity that is her journey. Stay strong.
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- October 9, 2011 at 3:50 pm
Search for CaroleK or Carole. She doesn't come to the board often anymore. There are some posts from her that would encourage you as she has is a survivor of ten years and had brain tumors and I think lung tumors. I think you could use that boost of positivity that is her journey. Stay strong.
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- October 9, 2011 at 3:52 pm
It's just so depressing knowing there's already treatments I can't have because I'm not BRAF + , and all these other trials out there that many think may be good ones once FDA approved someday (years from now), I'm just terrified I'll miss out on those if I don't make it til then.
I'm just terrified of more Brain Tumors coming back, and other tumors spreading to other organs.
I'm currently on Yervoy, but I read it only works in like 15% of people, another small group of people of course, like all the other treatments, I can only hope after my next 2 injections, and I get my results, that spots have shrunk. If I get enlargement (I have a spot in my lung & liver, 2 of them are 4+ cm, like the doctor said I might, I honestly think I'll have a heart attack.
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- October 9, 2011 at 3:52 pm
It's just so depressing knowing there's already treatments I can't have because I'm not BRAF + , and all these other trials out there that many think may be good ones once FDA approved someday (years from now), I'm just terrified I'll miss out on those if I don't make it til then.
I'm just terrified of more Brain Tumors coming back, and other tumors spreading to other organs.
I'm currently on Yervoy, but I read it only works in like 15% of people, another small group of people of course, like all the other treatments, I can only hope after my next 2 injections, and I get my results, that spots have shrunk. If I get enlargement (I have a spot in my lung & liver, 2 of them are 4+ cm, like the doctor said I might, I honestly think I'll have a heart attack.
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- October 9, 2011 at 3:52 pm
It's just so depressing knowing there's already treatments I can't have because I'm not BRAF + , and all these other trials out there that many think may be good ones once FDA approved someday (years from now), I'm just terrified I'll miss out on those if I don't make it til then.
I'm just terrified of more Brain Tumors coming back, and other tumors spreading to other organs.
I'm currently on Yervoy, but I read it only works in like 15% of people, another small group of people of course, like all the other treatments, I can only hope after my next 2 injections, and I get my results, that spots have shrunk. If I get enlargement (I have a spot in my lung & liver, 2 of them are 4+ cm, like the doctor said I might, I honestly think I'll have a heart attack.
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- October 9, 2011 at 7:34 pm
I know your fear all to well. Even though I've never had a brain tumour, there is always a chance anyone of us can get one.
As hard as it is, you can't let your mind focus too much on how long you're going to live. Right now, you're "healthy" and alive and you could very well have many, many years ahead of you. One thing about ipi, the 15% responders were those from a clinical trial involving people who were very sick and had large tumour burden in more than one organ. Just the other day, I read those numbers will improve as more people use ipi at an earlier stage or used on people who are not very sick. You may have have more than 1 site of mets, but you are not symptomatic and still have lots of hope. Out of curiousity, can you have surgery to remove the mets in your lung or liver?
As your Dr. for your blood work next time you go. Look at your LDH and your Absolute Lymphocye numbers. Both these numbers will give you a small idea of how you're doing. You want you LDH numbers to go down and those lymphocytes to go up. Your bloodwork will also tell your Dr, if your cancer to some degree to regressing or progressing.
Keep thinking ipi is going to work – don't let your mind believe this will fail. You have kids who need their Mom and you can do this! The mind if a powerful thing!
By the way, there is a woman on this site (Carol) who doesn't come on here much at all. She had lung and brain mets and did nothing but holistic. She is NED! People survive Stage 4 melanoma for many years – there are stats that prove that and you could very well be one of them.
Lisa – Stage 4
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- October 9, 2011 at 7:34 pm
I know your fear all to well. Even though I've never had a brain tumour, there is always a chance anyone of us can get one.
As hard as it is, you can't let your mind focus too much on how long you're going to live. Right now, you're "healthy" and alive and you could very well have many, many years ahead of you. One thing about ipi, the 15% responders were those from a clinical trial involving people who were very sick and had large tumour burden in more than one organ. Just the other day, I read those numbers will improve as more people use ipi at an earlier stage or used on people who are not very sick. You may have have more than 1 site of mets, but you are not symptomatic and still have lots of hope. Out of curiousity, can you have surgery to remove the mets in your lung or liver?
As your Dr. for your blood work next time you go. Look at your LDH and your Absolute Lymphocye numbers. Both these numbers will give you a small idea of how you're doing. You want you LDH numbers to go down and those lymphocytes to go up. Your bloodwork will also tell your Dr, if your cancer to some degree to regressing or progressing.
Keep thinking ipi is going to work – don't let your mind believe this will fail. You have kids who need their Mom and you can do this! The mind if a powerful thing!
By the way, there is a woman on this site (Carol) who doesn't come on here much at all. She had lung and brain mets and did nothing but holistic. She is NED! People survive Stage 4 melanoma for many years – there are stats that prove that and you could very well be one of them.
Lisa – Stage 4
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- October 9, 2011 at 7:34 pm
I know your fear all to well. Even though I've never had a brain tumour, there is always a chance anyone of us can get one.
As hard as it is, you can't let your mind focus too much on how long you're going to live. Right now, you're "healthy" and alive and you could very well have many, many years ahead of you. One thing about ipi, the 15% responders were those from a clinical trial involving people who were very sick and had large tumour burden in more than one organ. Just the other day, I read those numbers will improve as more people use ipi at an earlier stage or used on people who are not very sick. You may have have more than 1 site of mets, but you are not symptomatic and still have lots of hope. Out of curiousity, can you have surgery to remove the mets in your lung or liver?
As your Dr. for your blood work next time you go. Look at your LDH and your Absolute Lymphocye numbers. Both these numbers will give you a small idea of how you're doing. You want you LDH numbers to go down and those lymphocytes to go up. Your bloodwork will also tell your Dr, if your cancer to some degree to regressing or progressing.
Keep thinking ipi is going to work – don't let your mind believe this will fail. You have kids who need their Mom and you can do this! The mind if a powerful thing!
By the way, there is a woman on this site (Carol) who doesn't come on here much at all. She had lung and brain mets and did nothing but holistic. She is NED! People survive Stage 4 melanoma for many years – there are stats that prove that and you could very well be one of them.
Lisa – Stage 4
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- October 9, 2011 at 10:01 pm
Hello Lisa and all others 🙂
I hope that my story could help some people, in the beginning of 2010 i was told, that i had malignt melamom all over, – IL-2 took it all away except for a tumor in my brain. The brain, doctor told me, is protecting the brain from the IL-2 treatment so the treatment will not reach any tumor in the brain, so they cut the tumor out and me waking up with all functions intact.
To day i am not consideret sick, – but i guess the cancer can return any moment. I dont know why IL-2 worked so good in me, – but i ate a d vitamin pill every day, since a sientist wrote, that the body can not identify and fight cancer, without D vitamin, so i took a D vitamin every day since. I was also begining to eat all recomended in the book "Good food against cancer" written by 2 canadian scientists Richard Beliveau and Denis Gingras and then i prayed a lot to God.
Kisses and cross my fingers.
Niels
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- October 9, 2011 at 10:01 pm
Hello Lisa and all others 🙂
I hope that my story could help some people, in the beginning of 2010 i was told, that i had malignt melamom all over, – IL-2 took it all away except for a tumor in my brain. The brain, doctor told me, is protecting the brain from the IL-2 treatment so the treatment will not reach any tumor in the brain, so they cut the tumor out and me waking up with all functions intact.
To day i am not consideret sick, – but i guess the cancer can return any moment. I dont know why IL-2 worked so good in me, – but i ate a d vitamin pill every day, since a sientist wrote, that the body can not identify and fight cancer, without D vitamin, so i took a D vitamin every day since. I was also begining to eat all recomended in the book "Good food against cancer" written by 2 canadian scientists Richard Beliveau and Denis Gingras and then i prayed a lot to God.
Kisses and cross my fingers.
Niels
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- October 9, 2011 at 10:01 pm
Hello Lisa and all others 🙂
I hope that my story could help some people, in the beginning of 2010 i was told, that i had malignt melamom all over, – IL-2 took it all away except for a tumor in my brain. The brain, doctor told me, is protecting the brain from the IL-2 treatment so the treatment will not reach any tumor in the brain, so they cut the tumor out and me waking up with all functions intact.
To day i am not consideret sick, – but i guess the cancer can return any moment. I dont know why IL-2 worked so good in me, – but i ate a d vitamin pill every day, since a sientist wrote, that the body can not identify and fight cancer, without D vitamin, so i took a D vitamin every day since. I was also begining to eat all recomended in the book "Good food against cancer" written by 2 canadian scientists Richard Beliveau and Denis Gingras and then i prayed a lot to God.
Kisses and cross my fingers.
Niels
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- October 9, 2011 at 7:55 pm
Just want to let you know that i met a guy at a Support Group meeting last year who told us that he started with subq's then Bowel mets then Brain Met. He had them removed surgically. Not uncommon to hear his story except when i asked him when his last surgery was and he responded 1994! So there is hope, hang onto it.
best wishes
James
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- October 9, 2011 at 7:55 pm
Just want to let you know that i met a guy at a Support Group meeting last year who told us that he started with subq's then Bowel mets then Brain Met. He had them removed surgically. Not uncommon to hear his story except when i asked him when his last surgery was and he responded 1994! So there is hope, hang onto it.
best wishes
James
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- October 9, 2011 at 7:58 pm
I forgot to mention then only treatment he had after his last Operation was Whole Brain Radiation back in 1994.
James
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- October 9, 2011 at 7:58 pm
I forgot to mention then only treatment he had after his last Operation was Whole Brain Radiation back in 1994.
James
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- October 9, 2011 at 7:58 pm
I forgot to mention then only treatment he had after his last Operation was Whole Brain Radiation back in 1994.
James
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- October 9, 2011 at 7:55 pm
Just want to let you know that i met a guy at a Support Group meeting last year who told us that he started with subq's then Bowel mets then Brain Met. He had them removed surgically. Not uncommon to hear his story except when i asked him when his last surgery was and he responded 1994! So there is hope, hang onto it.
best wishes
James
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- October 9, 2011 at 9:09 pm
I do have lots of questions for my doctor this Friday Oct 14th, when I go for my 3rd injection of Yervoy. Last time they offered me my blood work results, and I said I'd take them, but I forgot to actually get them. I'll have to make sure to ask for them this time.
I am going to ask about surgery on my liver & lung, if it's even an option or if it will be further down the road after I've tried other treatments first, etc. I just don't want to miss the opportunity if it's already available and now is the time to do it.
I do feel so good when I read about others surviving Stage IV, and those who never had Brain tumors, I just wondered if they were better off since they never had brain tumors before, like it was easier to survive without them. I've seen others on here who have like 5-20 or more spots on their brain and it's just devastating to see that people out there have to suffer thru that, and the ones who make it thru, more power to them.
Thanks Lisa, I do forget sometimes that many who were on these trials the past few years, were already near the end of their life, or had alot more tumors, etc than I myself do. I just want this 1st treatment to work so badly. I read about these other great trials out there, that are years away from being FDA approved, and I just want to be part of those if possible, I will travel, etc, I just want the best care like everyone wants, we all want the best and all want the chance to make it years & years!
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- October 9, 2011 at 9:09 pm
I do have lots of questions for my doctor this Friday Oct 14th, when I go for my 3rd injection of Yervoy. Last time they offered me my blood work results, and I said I'd take them, but I forgot to actually get them. I'll have to make sure to ask for them this time.
I am going to ask about surgery on my liver & lung, if it's even an option or if it will be further down the road after I've tried other treatments first, etc. I just don't want to miss the opportunity if it's already available and now is the time to do it.
I do feel so good when I read about others surviving Stage IV, and those who never had Brain tumors, I just wondered if they were better off since they never had brain tumors before, like it was easier to survive without them. I've seen others on here who have like 5-20 or more spots on their brain and it's just devastating to see that people out there have to suffer thru that, and the ones who make it thru, more power to them.
Thanks Lisa, I do forget sometimes that many who were on these trials the past few years, were already near the end of their life, or had alot more tumors, etc than I myself do. I just want this 1st treatment to work so badly. I read about these other great trials out there, that are years away from being FDA approved, and I just want to be part of those if possible, I will travel, etc, I just want the best care like everyone wants, we all want the best and all want the chance to make it years & years!
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- October 9, 2011 at 9:09 pm
I do have lots of questions for my doctor this Friday Oct 14th, when I go for my 3rd injection of Yervoy. Last time they offered me my blood work results, and I said I'd take them, but I forgot to actually get them. I'll have to make sure to ask for them this time.
I am going to ask about surgery on my liver & lung, if it's even an option or if it will be further down the road after I've tried other treatments first, etc. I just don't want to miss the opportunity if it's already available and now is the time to do it.
I do feel so good when I read about others surviving Stage IV, and those who never had Brain tumors, I just wondered if they were better off since they never had brain tumors before, like it was easier to survive without them. I've seen others on here who have like 5-20 or more spots on their brain and it's just devastating to see that people out there have to suffer thru that, and the ones who make it thru, more power to them.
Thanks Lisa, I do forget sometimes that many who were on these trials the past few years, were already near the end of their life, or had alot more tumors, etc than I myself do. I just want this 1st treatment to work so badly. I read about these other great trials out there, that are years away from being FDA approved, and I just want to be part of those if possible, I will travel, etc, I just want the best care like everyone wants, we all want the best and all want the chance to make it years & years!
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- October 9, 2011 at 10:36 pm
About being disappointed that you're not BRAF-eligible…I was too, and then I found this article:
You have to register to read it, but it's free. The gist is this: A retrospective study was done in Australia on stage IV and unresectable stage III patients. Five year overall survival was the SAME for non-BRAF & BRAF-positive who received BRAF drugs. And the five year OS survival number in this group was around 50%. That's a hell of a lot better than the 10-15% we often hear. Remember that those 10-15% numbers are old data. This Australia study is dated 2010.
I hear your struggles…it can be really tough to live in the here and now with this beast. Although tomorrow may feel pretty uncertain, you do still get a choice – are you going to let melanoma take your today? I'm not.
Warmly,
KatyWI
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- October 9, 2011 at 10:36 pm
About being disappointed that you're not BRAF-eligible…I was too, and then I found this article:
You have to register to read it, but it's free. The gist is this: A retrospective study was done in Australia on stage IV and unresectable stage III patients. Five year overall survival was the SAME for non-BRAF & BRAF-positive who received BRAF drugs. And the five year OS survival number in this group was around 50%. That's a hell of a lot better than the 10-15% we often hear. Remember that those 10-15% numbers are old data. This Australia study is dated 2010.
I hear your struggles…it can be really tough to live in the here and now with this beast. Although tomorrow may feel pretty uncertain, you do still get a choice – are you going to let melanoma take your today? I'm not.
Warmly,
KatyWI
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- October 9, 2011 at 10:36 pm
About being disappointed that you're not BRAF-eligible…I was too, and then I found this article:
You have to register to read it, but it's free. The gist is this: A retrospective study was done in Australia on stage IV and unresectable stage III patients. Five year overall survival was the SAME for non-BRAF & BRAF-positive who received BRAF drugs. And the five year OS survival number in this group was around 50%. That's a hell of a lot better than the 10-15% we often hear. Remember that those 10-15% numbers are old data. This Australia study is dated 2010.
I hear your struggles…it can be really tough to live in the here and now with this beast. Although tomorrow may feel pretty uncertain, you do still get a choice – are you going to let melanoma take your today? I'm not.
Warmly,
KatyWI
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- October 9, 2011 at 11:09 pm
HI…
first of all… big hugs..
i do not have Melanoma.. or any other cancer.. My best friend has it.. and i am here to learn all i can for his sake..
I am a big fan of holistic healing..
and at this point.. if i were you.. i would take as much control of healing my body as possible..
My best friend brushes his skin daily.. uses the Baiden mitten.. he is on macro diet… no bad habits…
Suzanne Sommers has a book out called Knockout.. supposed to be amazing..
there was also a site of a dr posted her a few mos back about a dr who cured himself of melabnoma with a combination
of two cancer drugs.. supposedly he is having great success…
i have the site bookmarked… if you would like. i will post for you…
keep going…
xx
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- October 9, 2011 at 11:09 pm
HI…
first of all… big hugs..
i do not have Melanoma.. or any other cancer.. My best friend has it.. and i am here to learn all i can for his sake..
I am a big fan of holistic healing..
and at this point.. if i were you.. i would take as much control of healing my body as possible..
My best friend brushes his skin daily.. uses the Baiden mitten.. he is on macro diet… no bad habits…
Suzanne Sommers has a book out called Knockout.. supposed to be amazing..
there was also a site of a dr posted her a few mos back about a dr who cured himself of melabnoma with a combination
of two cancer drugs.. supposedly he is having great success…
i have the site bookmarked… if you would like. i will post for you…
keep going…
xx
-
- October 9, 2011 at 11:09 pm
HI…
first of all… big hugs..
i do not have Melanoma.. or any other cancer.. My best friend has it.. and i am here to learn all i can for his sake..
I am a big fan of holistic healing..
and at this point.. if i were you.. i would take as much control of healing my body as possible..
My best friend brushes his skin daily.. uses the Baiden mitten.. he is on macro diet… no bad habits…
Suzanne Sommers has a book out called Knockout.. supposed to be amazing..
there was also a site of a dr posted her a few mos back about a dr who cured himself of melabnoma with a combination
of two cancer drugs.. supposedly he is having great success…
i have the site bookmarked… if you would like. i will post for you…
keep going…
xx
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- October 9, 2011 at 11:50 pm
First brain tumor 2006, last one 2008. Brain metastases are by no means a death sentence.-
- October 19, 2011 at 1:12 am
Well, I am new to this ball park, I've been surfing this site since my Dad got the news he had Melanoma 2yrs ago, and today he landed into a new ball park and I landed here after reading your post.
Dad has been fighting this ugly beast for two years, first a spot on the chest, it looked like a blood bluster, our GP thought it was nothing to worry about, (WRONG). It turned out to be melanoma, after surgery test showed at that time it had not spread. 18 months later it showed up in the lungs, lots of small tumors everywhere. He was referred and met the requirements for ALT-801 clinical trial. The treatment halted the tumors and no new growth for 3 months after the treatment, then 2 larger tumors started to grow. Dr. recommended Yervoy, minor side effects thru the 2nd treatment. Then things started to change and so has Dad mentally , we called the Dr and after MRI today we find out he has 3 spots on the brain in different area's surgery is not looking like an option, radiation has been mentioned. We go this Thursday for consult. If you don't mind please tell me about your treatment.
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- October 19, 2011 at 1:12 am
Well, I am new to this ball park, I've been surfing this site since my Dad got the news he had Melanoma 2yrs ago, and today he landed into a new ball park and I landed here after reading your post.
Dad has been fighting this ugly beast for two years, first a spot on the chest, it looked like a blood bluster, our GP thought it was nothing to worry about, (WRONG). It turned out to be melanoma, after surgery test showed at that time it had not spread. 18 months later it showed up in the lungs, lots of small tumors everywhere. He was referred and met the requirements for ALT-801 clinical trial. The treatment halted the tumors and no new growth for 3 months after the treatment, then 2 larger tumors started to grow. Dr. recommended Yervoy, minor side effects thru the 2nd treatment. Then things started to change and so has Dad mentally , we called the Dr and after MRI today we find out he has 3 spots on the brain in different area's surgery is not looking like an option, radiation has been mentioned. We go this Thursday for consult. If you don't mind please tell me about your treatment.
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- October 19, 2011 at 1:12 am
Well, I am new to this ball park, I've been surfing this site since my Dad got the news he had Melanoma 2yrs ago, and today he landed into a new ball park and I landed here after reading your post.
Dad has been fighting this ugly beast for two years, first a spot on the chest, it looked like a blood bluster, our GP thought it was nothing to worry about, (WRONG). It turned out to be melanoma, after surgery test showed at that time it had not spread. 18 months later it showed up in the lungs, lots of small tumors everywhere. He was referred and met the requirements for ALT-801 clinical trial. The treatment halted the tumors and no new growth for 3 months after the treatment, then 2 larger tumors started to grow. Dr. recommended Yervoy, minor side effects thru the 2nd treatment. Then things started to change and so has Dad mentally , we called the Dr and after MRI today we find out he has 3 spots on the brain in different area's surgery is not looking like an option, radiation has been mentioned. We go this Thursday for consult. If you don't mind please tell me about your treatment.
-
- October 10, 2011 at 2:28 am
Thanks for replying everyone, all great replies, and being new to all of this (I'm 4 months into this), I'm still totally unknowledgeable about most items, like the BRAF, so it's good to know that there's nothing better/worse having it/not having it from what that talks about.
o2bcheri, yes, if you have a link, please post it.
Jag, it's good to know that you haven't had anymore Brain tumors since 2008, of course, I hope it stays that way. I'm just hoping I'm the same way once my spots are gone, or if I have to do another treatment to get rid of them, just don't want anymore of those.
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- October 10, 2011 at 2:28 am
Thanks for replying everyone, all great replies, and being new to all of this (I'm 4 months into this), I'm still totally unknowledgeable about most items, like the BRAF, so it's good to know that there's nothing better/worse having it/not having it from what that talks about.
o2bcheri, yes, if you have a link, please post it.
Jag, it's good to know that you haven't had anymore Brain tumors since 2008, of course, I hope it stays that way. I'm just hoping I'm the same way once my spots are gone, or if I have to do another treatment to get rid of them, just don't want anymore of those.
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- October 10, 2011 at 2:28 am
Thanks for replying everyone, all great replies, and being new to all of this (I'm 4 months into this), I'm still totally unknowledgeable about most items, like the BRAF, so it's good to know that there's nothing better/worse having it/not having it from what that talks about.
o2bcheri, yes, if you have a link, please post it.
Jag, it's good to know that you haven't had anymore Brain tumors since 2008, of course, I hope it stays that way. I'm just hoping I'm the same way once my spots are gone, or if I have to do another treatment to get rid of them, just don't want anymore of those.
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- October 11, 2011 at 2:09 am
Yes, there are people out there in this community who have survived brain tumors. Most of those, I believe, have had surgical removal or directed radiation to individual tumors. Our gal Nic from Oz had an astonishing number of crainiotomies. But, CaroleK is a great example for you because she had surgical removal ten years ago and has not again been visited by melanoma. I hope that YOU will be like her, not even visiting this place anymore in ten years because melanoma has not darkened your door again.
But I know you are too much in the thick of things to see that ahead of you right now.
It used to be easier for me to search this board based on certain criteria, so I can't navigate as well. I know there are a few people who used to come here besides Carole too, who I could point to. But I bet I can find Carole and get you in touch with her if you'd like.
I do not know, statistically, if a metastasis to the brain from melanoma can kill one faster than one to the liver or lung, but I can tell you that it kills in many ways. Since I've been here, I've seen a few folks go from brain tumors, but more from other tumors, bone tumors, liver tumors, lung tumors, plenty from just overall tumor burdon all over their bodies, subcutaneous and in organs, and perhaps most heartbreaking, one young woman died with a tumor that wrapped around the arteries of her heart, and finally her heart itself. I remember a young woman who died just 6 weeks after giving birth, she found out about her melanoma during her pregnancy.
There's no getting away from your statistical prognosis, but there's also the chance that YOU will be the one we are pointing at in ten years and telling newcomers about your miraculous rebound. Statistics are all about numbers, not individual people.
I've yet to see any logic, justice or order to the way that melanoma kills.
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- October 11, 2011 at 2:09 am
Yes, there are people out there in this community who have survived brain tumors. Most of those, I believe, have had surgical removal or directed radiation to individual tumors. Our gal Nic from Oz had an astonishing number of crainiotomies. But, CaroleK is a great example for you because she had surgical removal ten years ago and has not again been visited by melanoma. I hope that YOU will be like her, not even visiting this place anymore in ten years because melanoma has not darkened your door again.
But I know you are too much in the thick of things to see that ahead of you right now.
It used to be easier for me to search this board based on certain criteria, so I can't navigate as well. I know there are a few people who used to come here besides Carole too, who I could point to. But I bet I can find Carole and get you in touch with her if you'd like.
I do not know, statistically, if a metastasis to the brain from melanoma can kill one faster than one to the liver or lung, but I can tell you that it kills in many ways. Since I've been here, I've seen a few folks go from brain tumors, but more from other tumors, bone tumors, liver tumors, lung tumors, plenty from just overall tumor burdon all over their bodies, subcutaneous and in organs, and perhaps most heartbreaking, one young woman died with a tumor that wrapped around the arteries of her heart, and finally her heart itself. I remember a young woman who died just 6 weeks after giving birth, she found out about her melanoma during her pregnancy.
There's no getting away from your statistical prognosis, but there's also the chance that YOU will be the one we are pointing at in ten years and telling newcomers about your miraculous rebound. Statistics are all about numbers, not individual people.
I've yet to see any logic, justice or order to the way that melanoma kills.
-
- October 11, 2011 at 2:09 am
Yes, there are people out there in this community who have survived brain tumors. Most of those, I believe, have had surgical removal or directed radiation to individual tumors. Our gal Nic from Oz had an astonishing number of crainiotomies. But, CaroleK is a great example for you because she had surgical removal ten years ago and has not again been visited by melanoma. I hope that YOU will be like her, not even visiting this place anymore in ten years because melanoma has not darkened your door again.
But I know you are too much in the thick of things to see that ahead of you right now.
It used to be easier for me to search this board based on certain criteria, so I can't navigate as well. I know there are a few people who used to come here besides Carole too, who I could point to. But I bet I can find Carole and get you in touch with her if you'd like.
I do not know, statistically, if a metastasis to the brain from melanoma can kill one faster than one to the liver or lung, but I can tell you that it kills in many ways. Since I've been here, I've seen a few folks go from brain tumors, but more from other tumors, bone tumors, liver tumors, lung tumors, plenty from just overall tumor burdon all over their bodies, subcutaneous and in organs, and perhaps most heartbreaking, one young woman died with a tumor that wrapped around the arteries of her heart, and finally her heart itself. I remember a young woman who died just 6 weeks after giving birth, she found out about her melanoma during her pregnancy.
There's no getting away from your statistical prognosis, but there's also the chance that YOU will be the one we are pointing at in ten years and telling newcomers about your miraculous rebound. Statistics are all about numbers, not individual people.
I've yet to see any logic, justice or order to the way that melanoma kills.
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- October 12, 2011 at 2:11 am
I found Carol's profile, but it won't let me contact her, if anyone knows how, please let me know.
Thanks for the info, I just figured once you got brain tumors, that they'd be a constant ordeal and keep coming back, it's great to know that this isn't always the case.
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- October 12, 2011 at 2:11 am
I found Carol's profile, but it won't let me contact her, if anyone knows how, please let me know.
Thanks for the info, I just figured once you got brain tumors, that they'd be a constant ordeal and keep coming back, it's great to know that this isn't always the case.
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- October 12, 2011 at 2:11 am
I found Carol's profile, but it won't let me contact her, if anyone knows how, please let me know.
Thanks for the info, I just figured once you got brain tumors, that they'd be a constant ordeal and keep coming back, it's great to know that this isn't always the case.
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- July 25, 2012 at 11:46 pm
Amazing info and stories! My mom recently moved from stage III to stage IV with 7 brain mets. She had a stroke from the brain mets because one bled. She's had gamma knife brain radiation on 6 of them and will be going back for the 7th one soon. I've been researching drug treatment options. It is hopeful to read these inspiring stories!!!
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- July 25, 2012 at 11:46 pm
Amazing info and stories! My mom recently moved from stage III to stage IV with 7 brain mets. She had a stroke from the brain mets because one bled. She's had gamma knife brain radiation on 6 of them and will be going back for the 7th one soon. I've been researching drug treatment options. It is hopeful to read these inspiring stories!!!
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- July 25, 2012 at 11:46 pm
Amazing info and stories! My mom recently moved from stage III to stage IV with 7 brain mets. She had a stroke from the brain mets because one bled. She's had gamma knife brain radiation on 6 of them and will be going back for the 7th one soon. I've been researching drug treatment options. It is hopeful to read these inspiring stories!!!
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