› Forums › General Melanoma Community › Brain Mets
- This topic has 15 replies, 5 voices, and was last updated 8 years, 10 months ago by RGal.
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- June 8, 2015 at 10:21 pm
Can anyone share their stories with dealing with brain mets? My father's latest scan showed new tumors in his brain and the rad oncologist initially wanted him to start Yervoy and not treat tumors. Last week half of his face began to droop and the latest scan showed growth of the brain mets so he is now doing 10 days of targeted radiation.
Any stories good or bad would be much appreciated.
Thank you.
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- June 8, 2015 at 10:51 pm
Sorry that your father is dealing with that. There is absolutely no reason that radiation of brain mets can't be combined with immunotherapy, be it ipi or one of the anti-PD1 products. In fact, there is data to suggest that the combination is better than either alone. I had a brain met zapped with stereotactic radiation in April of 2010, started a 2 1/2 year nivo trial in December of 2010, and have had no brain mets since. Here is a post I put together that contains a lot of information that you may find helpful. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/02/ipi-nivo-combo-and-radiation-for.html
Wishing you and your father my best. Celeste
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- June 8, 2015 at 10:51 pm
Sorry that your father is dealing with that. There is absolutely no reason that radiation of brain mets can't be combined with immunotherapy, be it ipi or one of the anti-PD1 products. In fact, there is data to suggest that the combination is better than either alone. I had a brain met zapped with stereotactic radiation in April of 2010, started a 2 1/2 year nivo trial in December of 2010, and have had no brain mets since. Here is a post I put together that contains a lot of information that you may find helpful. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/02/ipi-nivo-combo-and-radiation-for.html
Wishing you and your father my best. Celeste
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- June 8, 2015 at 10:51 pm
Sorry that your father is dealing with that. There is absolutely no reason that radiation of brain mets can't be combined with immunotherapy, be it ipi or one of the anti-PD1 products. In fact, there is data to suggest that the combination is better than either alone. I had a brain met zapped with stereotactic radiation in April of 2010, started a 2 1/2 year nivo trial in December of 2010, and have had no brain mets since. Here is a post I put together that contains a lot of information that you may find helpful. http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/02/ipi-nivo-combo-and-radiation-for.html
Wishing you and your father my best. Celeste
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- June 9, 2015 at 1:31 am
I'm sorry you are going through this and I recommend that you get a second opinion. There is no contraindication that he can't take Yervoy and have radiation for brain mets and anyone who suggests that you should not treat brain mets and to wait and see is NUTS. I would run away from this doctor and find a melanoma specialist who is up on all the most recent research.
When my Mom was finally diagnosed with brain mets she had gamma knife treatment followed by Yervoy 4 days later. Others have it in the middle of treatment… Other than a sore neck and being tired she was perfectly fine.
I've included a post of mine to someone a while ago about this topic. It includes links to some articles and one really suggests that gamma knife radiation (aka SRS) is a better choice than whole brain. If your Dad hasn't started this check it out, it might be more beneficial unless it is required because of how large the tumor is…
Good Luck!
______________________________
My Mother had 25 brain tumors treated with gamma knife radiation. Whole Brain Radiation was never discussed. – I think the doctors felt WBRT was as beneficial long term compared to gamma knife radiation.
She had 8 treated (one missed) in by someone near Beverly Hills. 4 months+ later we had a emergency consult because a neuroncologist said my Mom had one new tumor but he wasn't advising gamma knife radiation. The emergency consult was with Dr. Eric Chang at USC in Los Angeles. He saw at least 5 in her prefrontal lobe. She was scheduled for gamma knife radiation the following week. They found and treated 17 the day of treatment. Again, not even a suggestion of WBRT.
She started Yervoy 4 days after the first treatment in December (2013) and had her last infusion at the end of March (2014) about 3 weeks before the second gamma knife radiation treatment.
It has been mentioned to us that Yervoy seems to work "last" on the brain. I am not sure if there is evidence on this, but the tumors my Mom had and elsewhere were gone or significantly reduced but she had new growth after treatment with Yervoy, but no new growth since the successful treatment by Dr. Chang and his team. – Some of this was due to the fact that one tumor was missed, but it can't explain all the rest.
Since we discovered my Mom had brain cancer she had been taking Cibdex, it is a natural source of cannabinoids. There is a article below that indicates this can be beneficial for brain cancer with gamma knife radiation.
Read these studies:
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Study finds marijuana drastically shrinks brain cancer
http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living
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- June 9, 2015 at 1:31 am
I'm sorry you are going through this and I recommend that you get a second opinion. There is no contraindication that he can't take Yervoy and have radiation for brain mets and anyone who suggests that you should not treat brain mets and to wait and see is NUTS. I would run away from this doctor and find a melanoma specialist who is up on all the most recent research.
When my Mom was finally diagnosed with brain mets she had gamma knife treatment followed by Yervoy 4 days later. Others have it in the middle of treatment… Other than a sore neck and being tired she was perfectly fine.
I've included a post of mine to someone a while ago about this topic. It includes links to some articles and one really suggests that gamma knife radiation (aka SRS) is a better choice than whole brain. If your Dad hasn't started this check it out, it might be more beneficial unless it is required because of how large the tumor is…
Good Luck!
______________________________
My Mother had 25 brain tumors treated with gamma knife radiation. Whole Brain Radiation was never discussed. – I think the doctors felt WBRT was as beneficial long term compared to gamma knife radiation.
She had 8 treated (one missed) in by someone near Beverly Hills. 4 months+ later we had a emergency consult because a neuroncologist said my Mom had one new tumor but he wasn't advising gamma knife radiation. The emergency consult was with Dr. Eric Chang at USC in Los Angeles. He saw at least 5 in her prefrontal lobe. She was scheduled for gamma knife radiation the following week. They found and treated 17 the day of treatment. Again, not even a suggestion of WBRT.
She started Yervoy 4 days after the first treatment in December (2013) and had her last infusion at the end of March (2014) about 3 weeks before the second gamma knife radiation treatment.
It has been mentioned to us that Yervoy seems to work "last" on the brain. I am not sure if there is evidence on this, but the tumors my Mom had and elsewhere were gone or significantly reduced but she had new growth after treatment with Yervoy, but no new growth since the successful treatment by Dr. Chang and his team. – Some of this was due to the fact that one tumor was missed, but it can't explain all the rest.
Since we discovered my Mom had brain cancer she had been taking Cibdex, it is a natural source of cannabinoids. There is a article below that indicates this can be beneficial for brain cancer with gamma knife radiation.
Read these studies:
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Study finds marijuana drastically shrinks brain cancer
http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living
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- June 9, 2015 at 1:31 am
I'm sorry you are going through this and I recommend that you get a second opinion. There is no contraindication that he can't take Yervoy and have radiation for brain mets and anyone who suggests that you should not treat brain mets and to wait and see is NUTS. I would run away from this doctor and find a melanoma specialist who is up on all the most recent research.
When my Mom was finally diagnosed with brain mets she had gamma knife treatment followed by Yervoy 4 days later. Others have it in the middle of treatment… Other than a sore neck and being tired she was perfectly fine.
I've included a post of mine to someone a while ago about this topic. It includes links to some articles and one really suggests that gamma knife radiation (aka SRS) is a better choice than whole brain. If your Dad hasn't started this check it out, it might be more beneficial unless it is required because of how large the tumor is…
Good Luck!
______________________________
My Mother had 25 brain tumors treated with gamma knife radiation. Whole Brain Radiation was never discussed. – I think the doctors felt WBRT was as beneficial long term compared to gamma knife radiation.
She had 8 treated (one missed) in by someone near Beverly Hills. 4 months+ later we had a emergency consult because a neuroncologist said my Mom had one new tumor but he wasn't advising gamma knife radiation. The emergency consult was with Dr. Eric Chang at USC in Los Angeles. He saw at least 5 in her prefrontal lobe. She was scheduled for gamma knife radiation the following week. They found and treated 17 the day of treatment. Again, not even a suggestion of WBRT.
She started Yervoy 4 days after the first treatment in December (2013) and had her last infusion at the end of March (2014) about 3 weeks before the second gamma knife radiation treatment.
It has been mentioned to us that Yervoy seems to work "last" on the brain. I am not sure if there is evidence on this, but the tumors my Mom had and elsewhere were gone or significantly reduced but she had new growth after treatment with Yervoy, but no new growth since the successful treatment by Dr. Chang and his team. – Some of this was due to the fact that one tumor was missed, but it can't explain all the rest.
Since we discovered my Mom had brain cancer she had been taking Cibdex, it is a natural source of cannabinoids. There is a article below that indicates this can be beneficial for brain cancer with gamma knife radiation.
Read these studies:
“The essential criticism of employing Gamma Knife radiosurgery without WBRT for patients with several lesions is that microscopic tumors might go untreated, necessitating salvage stereotactic radiosurgery or an alternative therapy,” he adds. “Thus, WBRT is widely advocated. However, a recent study showed that WBRT is only able to prevent the emergence of new tumors for no more than six months post-treatment. Many patients with brain mets can survive for more than a year, thereby outliving the effects of WBRT.”
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3892394/
Study finds marijuana drastically shrinks brain cancer
http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html?ir=Healthy+Living
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- June 9, 2015 at 9:40 am
My hubby had Stereotactic Radial Surgery on his brain mets then was supposed to start in Yervoy shortly thereafter. We did experience a delay because he had to go on high potency steroids for some side effects. Our melanoma specialist said the most important thing was the brain and everything else could follow. Get a second opinion!
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- June 9, 2015 at 9:40 am
My hubby had Stereotactic Radial Surgery on his brain mets then was supposed to start in Yervoy shortly thereafter. We did experience a delay because he had to go on high potency steroids for some side effects. Our melanoma specialist said the most important thing was the brain and everything else could follow. Get a second opinion!
-
- June 9, 2015 at 9:40 am
My hubby had Stereotactic Radial Surgery on his brain mets then was supposed to start in Yervoy shortly thereafter. We did experience a delay because he had to go on high potency steroids for some side effects. Our melanoma specialist said the most important thing was the brain and everything else could follow. Get a second opinion!
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- June 9, 2015 at 12:54 pm
Hi Rgal, you said he is getting targeted radiation, did they explain that one to you? My understanding is targeted radiation is stereotatic (Gammaknife or cyberknife). Is this what he is getting or is it world brain radiation? If the center of treatment that you are at doesn't have stereotatic technology then I would strongly advise you to get a second opinion from a hospital that does!!! Ed
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- June 9, 2015 at 8:35 pm
Thank you all. I know they are targeting each individual tumor via some sort of mask but unclear if it's Gamma or Cyberknife. He did have his second Yervoy infusion yesterday after the radiation so we will see but he is feeling and looking awful I just can't see how he could rebound from this.
He is under the care of an excellent melanoma specialist currently but the original oncologlist (who was somehow listed as a melanoma specialist) he was seeing failed him initially as far as I am concerned.
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- June 9, 2015 at 8:35 pm
Thank you all. I know they are targeting each individual tumor via some sort of mask but unclear if it's Gamma or Cyberknife. He did have his second Yervoy infusion yesterday after the radiation so we will see but he is feeling and looking awful I just can't see how he could rebound from this.
He is under the care of an excellent melanoma specialist currently but the original oncologlist (who was somehow listed as a melanoma specialist) he was seeing failed him initially as far as I am concerned.
-
- June 9, 2015 at 8:35 pm
Thank you all. I know they are targeting each individual tumor via some sort of mask but unclear if it's Gamma or Cyberknife. He did have his second Yervoy infusion yesterday after the radiation so we will see but he is feeling and looking awful I just can't see how he could rebound from this.
He is under the care of an excellent melanoma specialist currently but the original oncologlist (who was somehow listed as a melanoma specialist) he was seeing failed him initially as far as I am concerned.
-
- June 9, 2015 at 12:54 pm
Hi Rgal, you said he is getting targeted radiation, did they explain that one to you? My understanding is targeted radiation is stereotatic (Gammaknife or cyberknife). Is this what he is getting or is it world brain radiation? If the center of treatment that you are at doesn't have stereotatic technology then I would strongly advise you to get a second opinion from a hospital that does!!! Ed
-
- June 9, 2015 at 12:54 pm
Hi Rgal, you said he is getting targeted radiation, did they explain that one to you? My understanding is targeted radiation is stereotatic (Gammaknife or cyberknife). Is this what he is getting or is it world brain radiation? If the center of treatment that you are at doesn't have stereotatic technology then I would strongly advise you to get a second opinion from a hospital that does!!! Ed
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