› Forums › General Melanoma Community › Brain tumors- what to expect
- This topic has 45 replies, 8 voices, and was last updated 9 years, 10 months ago by
Kdw2012.
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- October 28, 2014 at 6:18 pm
My Doctor just called yesterday and I have 3 brain tumors. This explains the recent very bad headaches.
I am wondering what treatments are done for brain tumors?. I want to go to my appt on Thursday with info.
The doctor prescribed Dexamethasone for swelling. He said we will have to do radiation also, but this was just over the phone yesterday and we will be discussing more at my appt.
thank you
Kim
- Replies
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- October 28, 2014 at 7:18 pm
Options are surgery, targeted radiation, Temodar or whole brain radiation. Surgery depends on location of tumors. Targeted radiation (Gamma Knife, CyberKnife….) is good when you don't have a lot of spots. Temodar is a chemo that is easy to tolerate and passes the blood brain barrier – however it doesn't have fabulous numbers for "cure". Whole brain radiation (WBR) is used when there are a lot of lesions in the brain but has more long term potential side effects. Every one of these has been discussed on this site, so do some more searching here.
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- October 28, 2014 at 7:18 pm
Options are surgery, targeted radiation, Temodar or whole brain radiation. Surgery depends on location of tumors. Targeted radiation (Gamma Knife, CyberKnife….) is good when you don't have a lot of spots. Temodar is a chemo that is easy to tolerate and passes the blood brain barrier – however it doesn't have fabulous numbers for "cure". Whole brain radiation (WBR) is used when there are a lot of lesions in the brain but has more long term potential side effects. Every one of these has been discussed on this site, so do some more searching here.
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- October 28, 2014 at 7:18 pm
Options are surgery, targeted radiation, Temodar or whole brain radiation. Surgery depends on location of tumors. Targeted radiation (Gamma Knife, CyberKnife….) is good when you don't have a lot of spots. Temodar is a chemo that is easy to tolerate and passes the blood brain barrier – however it doesn't have fabulous numbers for "cure". Whole brain radiation (WBR) is used when there are a lot of lesions in the brain but has more long term potential side effects. Every one of these has been discussed on this site, so do some more searching here.
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- October 28, 2014 at 11:57 pm
Also as a plan B like after you do radiation or something you might want to see if you can have your doc start you on ipi or preferably a pd1 like keytruda. Eva had awesome success with keytruda for her brain mets. Also there have been lots of stories that several docs are starting to believe that radiation and immunotherapy like ipi or pd1 works better together. I'll finally find out next Tuesday if that is true for me. Good luck to you.
Artie
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- October 29, 2014 at 7:02 pm
here's a good webinar by a top doctor from Yale on brain mets and radiation: http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.VFE5JvnF9SQ
I've been through it and doing just fine. My doctor didn't recommend temodar, but IPI instead. Seems to work with the radiation.
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- October 29, 2014 at 7:02 pm
here's a good webinar by a top doctor from Yale on brain mets and radiation: http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.VFE5JvnF9SQ
I've been through it and doing just fine. My doctor didn't recommend temodar, but IPI instead. Seems to work with the radiation.
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- October 30, 2014 at 12:04 am
Good video but some of the information about immunotherapy is out of date. Ed
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- October 30, 2014 at 12:04 am
Good video but some of the information about immunotherapy is out of date. Ed
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- October 30, 2014 at 12:04 am
Good video but some of the information about immunotherapy is out of date. Ed
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- October 29, 2014 at 7:02 pm
here's a good webinar by a top doctor from Yale on brain mets and radiation: http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/#.VFE5JvnF9SQ
I've been through it and doing just fine. My doctor didn't recommend temodar, but IPI instead. Seems to work with the radiation.
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- October 28, 2014 at 11:57 pm
Also as a plan B like after you do radiation or something you might want to see if you can have your doc start you on ipi or preferably a pd1 like keytruda. Eva had awesome success with keytruda for her brain mets. Also there have been lots of stories that several docs are starting to believe that radiation and immunotherapy like ipi or pd1 works better together. I'll finally find out next Tuesday if that is true for me. Good luck to you.
Artie
-
- October 28, 2014 at 11:57 pm
Also as a plan B like after you do radiation or something you might want to see if you can have your doc start you on ipi or preferably a pd1 like keytruda. Eva had awesome success with keytruda for her brain mets. Also there have been lots of stories that several docs are starting to believe that radiation and immunotherapy like ipi or pd1 works better together. I'll finally find out next Tuesday if that is true for me. Good luck to you.
Artie
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- October 29, 2014 at 8:29 pm
Hi Kim, I had Cyberknife treatments last oct 2013 and I still around and kicking up a storm. Mine were about 4-5 mm in size and size does matter when it comes to brain mets!!! Location is something that they also take into consideration. The surgeon will give you his best recommendation, and time is important with brain mets, so be prepared to go forward quickly. I wish you the best of luck!!!! Ed
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- October 29, 2014 at 8:32 pm
should have said " I am still around" I should reread my writing before posting. Ed
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- October 29, 2014 at 8:32 pm
should have said " I am still around" I should reread my writing before posting. Ed
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- October 29, 2014 at 8:32 pm
should have said " I am still around" I should reread my writing before posting. Ed
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- October 29, 2014 at 8:29 pm
Hi Kim, I had Cyberknife treatments last oct 2013 and I still around and kicking up a storm. Mine were about 4-5 mm in size and size does matter when it comes to brain mets!!! Location is something that they also take into consideration. The surgeon will give you his best recommendation, and time is important with brain mets, so be prepared to go forward quickly. I wish you the best of luck!!!! Ed
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- October 29, 2014 at 8:29 pm
Hi Kim, I had Cyberknife treatments last oct 2013 and I still around and kicking up a storm. Mine were about 4-5 mm in size and size does matter when it comes to brain mets!!! Location is something that they also take into consideration. The surgeon will give you his best recommendation, and time is important with brain mets, so be prepared to go forward quickly. I wish you the best of luck!!!! Ed
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- October 29, 2014 at 8:39 pm
Hi Kim
I had one met and was headed for Gamma Knife to discover the tumor bled and burst I had a craniotomy instead, I did alternative treatment after which is not for everyone, Alive and well , a bit od , lol 13 yrs 9 months NED and doing the Happy dance Hang n there!!!!! NEVER EVER EVR GIVE UP HOPE,
LOVE AND LIGHT
Cacrole K
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- October 29, 2014 at 8:39 pm
Hi Kim
I had one met and was headed for Gamma Knife to discover the tumor bled and burst I had a craniotomy instead, I did alternative treatment after which is not for everyone, Alive and well , a bit od , lol 13 yrs 9 months NED and doing the Happy dance Hang n there!!!!! NEVER EVER EVR GIVE UP HOPE,
LOVE AND LIGHT
Cacrole K
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- October 29, 2014 at 8:39 pm
Hi Kim
I had one met and was headed for Gamma Knife to discover the tumor bled and burst I had a craniotomy instead, I did alternative treatment after which is not for everyone, Alive and well , a bit od , lol 13 yrs 9 months NED and doing the Happy dance Hang n there!!!!! NEVER EVER EVR GIVE UP HOPE,
LOVE AND LIGHT
Cacrole K
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- October 30, 2014 at 12:27 pm
Hallo Kim,
if Cyberknife / Gamm knife does not work, Ask your doctor for Brachytherapy.
Its an old technique, but still used by some Doctors.
My melanom tumor was 2cm in size. Had done brachytherapy in Mar 2014.
Its still there, but not grown in size.
According to doctors, the size will be reducing in the next couple of months.
If you need to read abt it, search in google : Iodine – 125 brachytherapy for brain tumors – a review
-
- October 30, 2014 at 12:27 pm
Hallo Kim,
if Cyberknife / Gamm knife does not work, Ask your doctor for Brachytherapy.
Its an old technique, but still used by some Doctors.
My melanom tumor was 2cm in size. Had done brachytherapy in Mar 2014.
Its still there, but not grown in size.
According to doctors, the size will be reducing in the next couple of months.
If you need to read abt it, search in google : Iodine – 125 brachytherapy for brain tumors – a review
-
- October 30, 2014 at 3:29 pm
Kim,
At each of the 2 facilities I was treated at (two different episodes), a multi-disciplinary 'tumor board' met to discuss my case among others. That's like a group discussion by a neurosurgeon, oncologist and radiation oncologist, where they collaborate to discuss what treatments they will recommend. I would ask if your case will be discussed by a multi-discipinary tumor board.
My brain mets were treated very similarly at the 2 different facilities (at 2 different points in time). Craniotomy for the bigger (3cm) tumors. Beam radiation — cyber knife once and gamma knife once — for the smaller ones, and to treat the resection cavity tumor beds. I haven't needed to go the more impactful step of whole brain radiation (WBR). With you being diagnosed with 3 brain tumors, I would bet the same for you, that beam radiation rather than WBR will probably be recommended.
One thing you might want to do is look into for a neurosurgery department with a high rating, for a second opinion at least. However accurate the following list is or isn't, it is a ranking — http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery. My subjective experience from being treated at 2 differen facilities is, it's as beneficial to see a great neurosurgery department as it is to look for a melanoma specializing oncologist. My second round of brain surgeries were done at the #5 ranked faclity.I was having symptoms — not headaches but different ones. I knew the next step for me was getting through the week or so leading up to treatment. The dexamethasone helped a lot. The first time I also got a second opinion. The second time I was treated at the facility I had gotten the previous second opinion at.
As a sidebar, my neurosurgeon did discuss brachytherapy for me at one point using radiation seeds to line the inside of a post-resection cavity, if I needed his services again. It wasn't a technique my oncologist was familiar with for melanoma, but I am seen at a top neurosurgery program. I haven't had to go back to see my neurosurgeon, knock on wood – just my oncologist. Someone here had another technique used — instead of radiation seeds, a chemo-dispensing wafer was left in their resection cavity. Search MPIP for 'gliadel wafer'.
Let us know what your doc tells you, and how you are doing.
– Kyle
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- October 30, 2014 at 3:29 pm
Kim,
At each of the 2 facilities I was treated at (two different episodes), a multi-disciplinary 'tumor board' met to discuss my case among others. That's like a group discussion by a neurosurgeon, oncologist and radiation oncologist, where they collaborate to discuss what treatments they will recommend. I would ask if your case will be discussed by a multi-discipinary tumor board.
My brain mets were treated very similarly at the 2 different facilities (at 2 different points in time). Craniotomy for the bigger (3cm) tumors. Beam radiation — cyber knife once and gamma knife once — for the smaller ones, and to treat the resection cavity tumor beds. I haven't needed to go the more impactful step of whole brain radiation (WBR). With you being diagnosed with 3 brain tumors, I would bet the same for you, that beam radiation rather than WBR will probably be recommended.
One thing you might want to do is look into for a neurosurgery department with a high rating, for a second opinion at least. However accurate the following list is or isn't, it is a ranking — http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery. My subjective experience from being treated at 2 differen facilities is, it's as beneficial to see a great neurosurgery department as it is to look for a melanoma specializing oncologist. My second round of brain surgeries were done at the #5 ranked faclity.I was having symptoms — not headaches but different ones. I knew the next step for me was getting through the week or so leading up to treatment. The dexamethasone helped a lot. The first time I also got a second opinion. The second time I was treated at the facility I had gotten the previous second opinion at.
As a sidebar, my neurosurgeon did discuss brachytherapy for me at one point using radiation seeds to line the inside of a post-resection cavity, if I needed his services again. It wasn't a technique my oncologist was familiar with for melanoma, but I am seen at a top neurosurgery program. I haven't had to go back to see my neurosurgeon, knock on wood – just my oncologist. Someone here had another technique used — instead of radiation seeds, a chemo-dispensing wafer was left in their resection cavity. Search MPIP for 'gliadel wafer'.
Let us know what your doc tells you, and how you are doing.
– Kyle
-
- October 30, 2014 at 3:29 pm
Kim,
At each of the 2 facilities I was treated at (two different episodes), a multi-disciplinary 'tumor board' met to discuss my case among others. That's like a group discussion by a neurosurgeon, oncologist and radiation oncologist, where they collaborate to discuss what treatments they will recommend. I would ask if your case will be discussed by a multi-discipinary tumor board.
My brain mets were treated very similarly at the 2 different facilities (at 2 different points in time). Craniotomy for the bigger (3cm) tumors. Beam radiation — cyber knife once and gamma knife once — for the smaller ones, and to treat the resection cavity tumor beds. I haven't needed to go the more impactful step of whole brain radiation (WBR). With you being diagnosed with 3 brain tumors, I would bet the same for you, that beam radiation rather than WBR will probably be recommended.
One thing you might want to do is look into for a neurosurgery department with a high rating, for a second opinion at least. However accurate the following list is or isn't, it is a ranking — http://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery. My subjective experience from being treated at 2 differen facilities is, it's as beneficial to see a great neurosurgery department as it is to look for a melanoma specializing oncologist. My second round of brain surgeries were done at the #5 ranked faclity.I was having symptoms — not headaches but different ones. I knew the next step for me was getting through the week or so leading up to treatment. The dexamethasone helped a lot. The first time I also got a second opinion. The second time I was treated at the facility I had gotten the previous second opinion at.
As a sidebar, my neurosurgeon did discuss brachytherapy for me at one point using radiation seeds to line the inside of a post-resection cavity, if I needed his services again. It wasn't a technique my oncologist was familiar with for melanoma, but I am seen at a top neurosurgery program. I haven't had to go back to see my neurosurgeon, knock on wood – just my oncologist. Someone here had another technique used — instead of radiation seeds, a chemo-dispensing wafer was left in their resection cavity. Search MPIP for 'gliadel wafer'.
Let us know what your doc tells you, and how you are doing.
– Kyle
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- October 30, 2014 at 3:35 pm
Another thing to look into is whether there's any way to get systemic treatment (i.e., ipilimumab or another one) post-treatment. The second time around for me, I got ipilimumab starting just a couple of weeks after the last radiation treatment. My oncologist thinks that made a big difference holding down the cancer later on.
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- December 9, 2014 at 9:32 pm
Thank you everyone for your help and innformation. I did have Gamma and started ipi the following week and 2 more doses scheduled one the day after Christmas and then in Jan.
I am struggling with headaches and am on Dexamethasone for those.
We scan Brain in Feb annd body again in March.
This is a rough road to travel but I am tring to stay positive!!
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- December 10, 2014 at 8:54 pm
Hi,
I hear you that's it's been a tough road for you to travel. The headaches must be difficult, among other things they have probably been a daily vicseral reminder of the fact where you medical situation has been. I know I feel that way on some days where my head feels a little janky. May the swelling go down and the headaches begin to abate. I Hope good things for you from IPI. Hang in there and persist. Please keep us updated. Thinking of you.
– Kyle
-
- December 10, 2014 at 8:54 pm
Hi,
I hear you that's it's been a tough road for you to travel. The headaches must be difficult, among other things they have probably been a daily vicseral reminder of the fact where you medical situation has been. I know I feel that way on some days where my head feels a little janky. May the swelling go down and the headaches begin to abate. I Hope good things for you from IPI. Hang in there and persist. Please keep us updated. Thinking of you.
– Kyle
-
- December 10, 2014 at 8:54 pm
Hi,
I hear you that's it's been a tough road for you to travel. The headaches must be difficult, among other things they have probably been a daily vicseral reminder of the fact where you medical situation has been. I know I feel that way on some days where my head feels a little janky. May the swelling go down and the headaches begin to abate. I Hope good things for you from IPI. Hang in there and persist. Please keep us updated. Thinking of you.
– Kyle
-
- December 9, 2014 at 9:32 pm
Thank you everyone for your help and innformation. I did have Gamma and started ipi the following week and 2 more doses scheduled one the day after Christmas and then in Jan.
I am struggling with headaches and am on Dexamethasone for those.
We scan Brain in Feb annd body again in March.
This is a rough road to travel but I am tring to stay positive!!
-
- December 9, 2014 at 9:32 pm
Thank you everyone for your help and innformation. I did have Gamma and started ipi the following week and 2 more doses scheduled one the day after Christmas and then in Jan.
I am struggling with headaches and am on Dexamethasone for those.
We scan Brain in Feb annd body again in March.
This is a rough road to travel but I am tring to stay positive!!
-
- October 30, 2014 at 3:35 pm
Another thing to look into is whether there's any way to get systemic treatment (i.e., ipilimumab or another one) post-treatment. The second time around for me, I got ipilimumab starting just a couple of weeks after the last radiation treatment. My oncologist thinks that made a big difference holding down the cancer later on.
-
- October 30, 2014 at 3:35 pm
Another thing to look into is whether there's any way to get systemic treatment (i.e., ipilimumab or another one) post-treatment. The second time around for me, I got ipilimumab starting just a couple of weeks after the last radiation treatment. My oncologist thinks that made a big difference holding down the cancer later on.
-
- October 30, 2014 at 12:27 pm
Hallo Kim,
if Cyberknife / Gamm knife does not work, Ask your doctor for Brachytherapy.
Its an old technique, but still used by some Doctors.
My melanom tumor was 2cm in size. Had done brachytherapy in Mar 2014.
Its still there, but not grown in size.
According to doctors, the size will be reducing in the next couple of months.
If you need to read abt it, search in google : Iodine – 125 brachytherapy for brain tumors – a review
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- February 18, 2015 at 1:59 am
I now have 12 brain tumors and I am wondering how this will progress….. Any information would be helpful.
thank you
kim
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- February 20, 2015 at 1:53 am
I thought maybe I should provide more information.
in November they performed a MRI/ CT SCAN of the body with no tumors. Previously there was the original site on the back and the. A recurrence in left axillary lymph node in June complete removal. In November they also performed Brain MRI which discovered 3 small tumors these were treated with radiation the second week of November. I also started Yervoy at that time, 5 weeks later I started to have headaches more than usual and ear ringing hand shaking clumsiness, they did another MRI 9 more tumors were found. Whole brain radittion started on Christmas Eve.
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- February 20, 2015 at 1:53 am
I thought maybe I should provide more information.
in November they performed a MRI/ CT SCAN of the body with no tumors. Previously there was the original site on the back and the. A recurrence in left axillary lymph node in June complete removal. In November they also performed Brain MRI which discovered 3 small tumors these were treated with radiation the second week of November. I also started Yervoy at that time, 5 weeks later I started to have headaches more than usual and ear ringing hand shaking clumsiness, they did another MRI 9 more tumors were found. Whole brain radittion started on Christmas Eve.
-
- February 20, 2015 at 1:53 am
I thought maybe I should provide more information.
in November they performed a MRI/ CT SCAN of the body with no tumors. Previously there was the original site on the back and the. A recurrence in left axillary lymph node in June complete removal. In November they also performed Brain MRI which discovered 3 small tumors these were treated with radiation the second week of November. I also started Yervoy at that time, 5 weeks later I started to have headaches more than usual and ear ringing hand shaking clumsiness, they did another MRI 9 more tumors were found. Whole brain radittion started on Christmas Eve.
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