› Forums › General Melanoma Community › long term brain mets
- This topic has 24 replies, 6 voices, and was last updated 9 years, 11 months ago by
Bubbles.
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- May 20, 2014 at 5:52 pm
Can you tell me ate there any people out there who have had long term brain mets. I have just been diagnosed with them and just wondered if I stood a chance x
- Replies
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- May 20, 2014 at 6:37 pm
Yes.Yes.Yes. Hang in there. I've managed to stay clear of the brain mets so far so I can't give you personal experience but there are dozens of folks on here that have had brain mets and are now NED! If you are comfortable maybe you could give a little more info on your specifics so that others with a similar experience could tell you their road to success. I know there are several different options now. There is also currently a Anti-PD1 trial that includes patients with brain mets. I know others will be chiming in soon with better info. Just wanted to let you know there is a lot of reason to be hopeful with some of these new treatment options.
Brian
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- May 20, 2014 at 6:37 pm
Yes.Yes.Yes. Hang in there. I've managed to stay clear of the brain mets so far so I can't give you personal experience but there are dozens of folks on here that have had brain mets and are now NED! If you are comfortable maybe you could give a little more info on your specifics so that others with a similar experience could tell you their road to success. I know there are several different options now. There is also currently a Anti-PD1 trial that includes patients with brain mets. I know others will be chiming in soon with better info. Just wanted to let you know there is a lot of reason to be hopeful with some of these new treatment options.
Brian
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- May 20, 2014 at 6:59 pm
I remember watching this a while back and thinking it was pretty good. It's a couple years old now so there may be some new advancements but this might be worth a watch.
http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/
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- May 20, 2014 at 6:59 pm
I remember watching this a while back and thinking it was pretty good. It's a couple years old now so there may be some new advancements but this might be worth a watch.
http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/
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- May 20, 2014 at 6:59 pm
I remember watching this a while back and thinking it was pretty good. It's a couple years old now so there may be some new advancements but this might be worth a watch.
http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastases/
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- May 20, 2014 at 6:37 pm
Yes.Yes.Yes. Hang in there. I've managed to stay clear of the brain mets so far so I can't give you personal experience but there are dozens of folks on here that have had brain mets and are now NED! If you are comfortable maybe you could give a little more info on your specifics so that others with a similar experience could tell you their road to success. I know there are several different options now. There is also currently a Anti-PD1 trial that includes patients with brain mets. I know others will be chiming in soon with better info. Just wanted to let you know there is a lot of reason to be hopeful with some of these new treatment options.
Brian
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- May 20, 2014 at 7:04 pm
My husband, Don, was diagnosed January 2013 with Stage IV. He had mets everywhere, including the brain. He has had 2 Cyberknife treatments, a surgical resection, and another SRS treatment for yet more. This was all between February and August of 2013. As of now, no new brain mets and he is holding steady.
He completed Ipilumumab treatments (Yervoy) last August, and I attribute this drug for holding his brain mets steady.
We were strongly encouraged to do "whole brain" radiation instead of the targeted stereotactic radiation treatments, but we did not go that route.
I know the brain mets scared me more than any of his others, so I can appreciate your concern. But they are just another part of this melanoma roller coaster.
Take care, and good luck.
Janet Lee
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- May 20, 2014 at 7:04 pm
My husband, Don, was diagnosed January 2013 with Stage IV. He had mets everywhere, including the brain. He has had 2 Cyberknife treatments, a surgical resection, and another SRS treatment for yet more. This was all between February and August of 2013. As of now, no new brain mets and he is holding steady.
He completed Ipilumumab treatments (Yervoy) last August, and I attribute this drug for holding his brain mets steady.
We were strongly encouraged to do "whole brain" radiation instead of the targeted stereotactic radiation treatments, but we did not go that route.
I know the brain mets scared me more than any of his others, so I can appreciate your concern. But they are just another part of this melanoma roller coaster.
Take care, and good luck.
Janet Lee
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- May 20, 2014 at 7:04 pm
My husband, Don, was diagnosed January 2013 with Stage IV. He had mets everywhere, including the brain. He has had 2 Cyberknife treatments, a surgical resection, and another SRS treatment for yet more. This was all between February and August of 2013. As of now, no new brain mets and he is holding steady.
He completed Ipilumumab treatments (Yervoy) last August, and I attribute this drug for holding his brain mets steady.
We were strongly encouraged to do "whole brain" radiation instead of the targeted stereotactic radiation treatments, but we did not go that route.
I know the brain mets scared me more than any of his others, so I can appreciate your concern. But they are just another part of this melanoma roller coaster.
Take care, and good luck.
Janet Lee
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- May 20, 2014 at 7:20 pm
Brain mets are no longer the death sentence they were 3 or 4 years ago. However, they do need to be treated ASAP. Melanoma tumors anywhere in the body tend to bleed; even small tumors can bleed. If a tumor in the brain bleeds, that is a stroke and it can cause signifianct brain damage. Brain tumors can be treated quickly with neurosurgery, stereotactic radiosurgery ("Gamma Knife" or "Cyber Knife") or whole brain radiation. Most patients receive one or more of these treatments.
In the longer term, some of the new melanoma treatments like BRAF inhibitors (e.g., Dabrafenib) and check point inhibitos (e.g., Yervoy) do have some effect on brain mets and seem to help shrink brain mets after radiation treatment and/or help to prevent the appearance of new brain mets. But these drugs are considered slow-acting compared to the immediate action of surgery or radiation.
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- May 22, 2014 at 1:52 am
POW always shares this point when brain mets are discussed given her experiences with her brother, which was very sad and unfortunate. However, this should not scare you. While it is true that any melanoma met can bleed, it is not the most common event and others who have experienced brain mets have given you lots of good, realistic information and reasons for hope. Take care. C
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- May 22, 2014 at 1:52 am
POW always shares this point when brain mets are discussed given her experiences with her brother, which was very sad and unfortunate. However, this should not scare you. While it is true that any melanoma met can bleed, it is not the most common event and others who have experienced brain mets have given you lots of good, realistic information and reasons for hope. Take care. C
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- May 22, 2014 at 1:52 am
POW always shares this point when brain mets are discussed given her experiences with her brother, which was very sad and unfortunate. However, this should not scare you. While it is true that any melanoma met can bleed, it is not the most common event and others who have experienced brain mets have given you lots of good, realistic information and reasons for hope. Take care. C
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- May 20, 2014 at 7:20 pm
Brain mets are no longer the death sentence they were 3 or 4 years ago. However, they do need to be treated ASAP. Melanoma tumors anywhere in the body tend to bleed; even small tumors can bleed. If a tumor in the brain bleeds, that is a stroke and it can cause signifianct brain damage. Brain tumors can be treated quickly with neurosurgery, stereotactic radiosurgery ("Gamma Knife" or "Cyber Knife") or whole brain radiation. Most patients receive one or more of these treatments.
In the longer term, some of the new melanoma treatments like BRAF inhibitors (e.g., Dabrafenib) and check point inhibitos (e.g., Yervoy) do have some effect on brain mets and seem to help shrink brain mets after radiation treatment and/or help to prevent the appearance of new brain mets. But these drugs are considered slow-acting compared to the immediate action of surgery or radiation.
-
- May 20, 2014 at 7:20 pm
Brain mets are no longer the death sentence they were 3 or 4 years ago. However, they do need to be treated ASAP. Melanoma tumors anywhere in the body tend to bleed; even small tumors can bleed. If a tumor in the brain bleeds, that is a stroke and it can cause signifianct brain damage. Brain tumors can be treated quickly with neurosurgery, stereotactic radiosurgery ("Gamma Knife" or "Cyber Knife") or whole brain radiation. Most patients receive one or more of these treatments.
In the longer term, some of the new melanoma treatments like BRAF inhibitors (e.g., Dabrafenib) and check point inhibitos (e.g., Yervoy) do have some effect on brain mets and seem to help shrink brain mets after radiation treatment and/or help to prevent the appearance of new brain mets. But these drugs are considered slow-acting compared to the immediate action of surgery or radiation.
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- May 21, 2014 at 6:36 am
My brain met history is:– Craniotomy (Oct. 2010) 1 tumor resected– CyberKnife (Nov. 2010) 1 resected tumor bed, 1 additional new tumor treated– Craniotomy (Jun. 2011) 1 recurrent tumor, 1 new tumor resected– Gamma Knife (Jun. 2011) 2 tumor beds, 2 additional new tumors treated- Yervoy (Jun.-Aug. 2011) 1 cycle/4 dosesThat kept things clear till a new recent new recurrence — found in lung only. My oncologist thinks I had a pretty good run with the Yervoy. I've started a combination PD-1 treatment now for the new recurrence. -
- May 21, 2014 at 6:36 am
My brain met history is:– Craniotomy (Oct. 2010) 1 tumor resected– CyberKnife (Nov. 2010) 1 resected tumor bed, 1 additional new tumor treated– Craniotomy (Jun. 2011) 1 recurrent tumor, 1 new tumor resected– Gamma Knife (Jun. 2011) 2 tumor beds, 2 additional new tumors treated- Yervoy (Jun.-Aug. 2011) 1 cycle/4 dosesThat kept things clear till a new recent new recurrence — found in lung only. My oncologist thinks I had a pretty good run with the Yervoy. I've started a combination PD-1 treatment now for the new recurrence. -
- May 21, 2014 at 6:36 am
My brain met history is:– Craniotomy (Oct. 2010) 1 tumor resected– CyberKnife (Nov. 2010) 1 resected tumor bed, 1 additional new tumor treated– Craniotomy (Jun. 2011) 1 recurrent tumor, 1 new tumor resected– Gamma Knife (Jun. 2011) 2 tumor beds, 2 additional new tumors treated- Yervoy (Jun.-Aug. 2011) 1 cycle/4 dosesThat kept things clear till a new recent new recurrence — found in lung only. My oncologist thinks I had a pretty good run with the Yervoy. I've started a combination PD-1 treatment now for the new recurrence. -
- May 21, 2014 at 4:34 pm
I too, had a brain met treated with SRS…in 2010 and am NED today. There are many posts related to brain mets and their treatment on my blog if you are interested. Just do a search in the oval at the top left corner if you'd like. Wishing you the best. Celeste
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- May 21, 2014 at 4:34 pm
I too, had a brain met treated with SRS…in 2010 and am NED today. There are many posts related to brain mets and their treatment on my blog if you are interested. Just do a search in the oval at the top left corner if you'd like. Wishing you the best. Celeste
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- May 21, 2014 at 4:34 pm
I too, had a brain met treated with SRS…in 2010 and am NED today. There are many posts related to brain mets and their treatment on my blog if you are interested. Just do a search in the oval at the top left corner if you'd like. Wishing you the best. Celeste
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