› Forums › General Melanoma Community › Brain mets on mek/tak need advice
- This topic has 33 replies, 4 voices, and was last updated 8 years, 3 months ago by
stevecathy.
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- September 27, 2016 at 4:37 pm
Short of story , my husband has been on mekinist and taflinar since Jan 16. Ct scan 5 weeks ago looked great , yesterday began feeling heaviness in left leg and arm . Primary Dr sent to er , he began to have seizures while at er . Mri done and confirmed brain lessions . There are 4 that were measured 1 to 2.5 cm . We are heartbroken, I have ask local oncologist if he can start keytruda. Advice , comments , anyone dealing with this issue , success, experience would all be appreciated. Please any suggestions. Thank you
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- September 27, 2016 at 7:30 pm
Make sure you husband in on Keppra for seizure's. No driving for him.
Find the best radiation oncologist you can find and get an appointment ASAP. They may be able treat some of these with gamma knife radiation and/or do a craniotomy for large brain mets.
My Mom has had 28 of these in all and when she started this she had gamma knife radiation and Yervoy 4 days later, then gamma knife again for more brain mets. She eventually had a reoccurrence and ended up on Keytruda and will end that in about a year. She is now 80 and its been basically a walk in the park for her. But it wouldn't have been if we didn't end up with a awesome team and we make sure we had aggressive treatment for the brain mets.
Good Luck!
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- September 27, 2016 at 8:08 pm
Patina , praise first your mom!!!! Thank you sooo much for the words . You have given me encouragement!!! Wow , I love to hear this. He is starting radiation today and they are giving him kepra. I truly thank you for response. Bless you and your mom -
- September 29, 2016 at 2:00 pm
Yes it is whole brain . There were 7 mets biggest 2.5 cm. Where we are they do not do gamma knife. -
- September 29, 2016 at 2:00 pm
Yes it is whole brain . There were 7 mets biggest 2.5 cm. Where we are they do not do gamma knife. -
- September 29, 2016 at 6:12 pm
I would highly recommend that you get a second opinion and look for someone who has experience with gamma knife.
My Mom's doctor treated her for 17 brain mets (2014) in a single day. Some were small and some were as large as your husbands. This took one day and we did not need to worry about a significant chance of cognitive decline that occurs far more frequently with whole brain radiation.
She was put on ipi (when 8 were treated in 2013) and even though she had 17 treated later (2014) she was not put on another immunotherapy until over a year after he last gamma knife treatment and only then because of of the ordinal brain mets had a reoccurrence.
My Mom had no cognitive decline and she had what they called an abscopal effect where the immunotherapy worked with the SRS and she got a better outcome.
Fewer people are pushing WBRT because of the cognitive side effects and the little long term benefit that patients get when compared to SRS (gamma knife).
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- September 29, 2016 at 6:12 pm
I would highly recommend that you get a second opinion and look for someone who has experience with gamma knife.
My Mom's doctor treated her for 17 brain mets (2014) in a single day. Some were small and some were as large as your husbands. This took one day and we did not need to worry about a significant chance of cognitive decline that occurs far more frequently with whole brain radiation.
She was put on ipi (when 8 were treated in 2013) and even though she had 17 treated later (2014) she was not put on another immunotherapy until over a year after he last gamma knife treatment and only then because of of the ordinal brain mets had a reoccurrence.
My Mom had no cognitive decline and she had what they called an abscopal effect where the immunotherapy worked with the SRS and she got a better outcome.
Fewer people are pushing WBRT because of the cognitive side effects and the little long term benefit that patients get when compared to SRS (gamma knife).
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- September 29, 2016 at 10:49 pm
Thank you for the advice. We have appt Monday with pcp and oncologist local. However all records are being sent to ctca in zion where he has been treated. Looking at all their opinions. I thank you for info and will talk with all doctors. I don’t want any cognitive issues. This has been so overwhelming, ughhhhh!! Thank you soo much for reply and advice . I am sooo grateful for this site!!! -
- September 29, 2016 at 10:49 pm
Thank you for the advice. We have appt Monday with pcp and oncologist local. However all records are being sent to ctca in zion where he has been treated. Looking at all their opinions. I thank you for info and will talk with all doctors. I don’t want any cognitive issues. This has been so overwhelming, ughhhhh!! Thank you soo much for reply and advice . I am sooo grateful for this site!!! -
- September 29, 2016 at 10:49 pm
Thank you for the advice. We have appt Monday with pcp and oncologist local. However all records are being sent to ctca in zion where he has been treated. Looking at all their opinions. I thank you for info and will talk with all doctors. I don’t want any cognitive issues. This has been so overwhelming, ughhhhh!! Thank you soo much for reply and advice . I am sooo grateful for this site!!! -
- September 29, 2016 at 6:12 pm
I would highly recommend that you get a second opinion and look for someone who has experience with gamma knife.
My Mom's doctor treated her for 17 brain mets (2014) in a single day. Some were small and some were as large as your husbands. This took one day and we did not need to worry about a significant chance of cognitive decline that occurs far more frequently with whole brain radiation.
She was put on ipi (when 8 were treated in 2013) and even though she had 17 treated later (2014) she was not put on another immunotherapy until over a year after he last gamma knife treatment and only then because of of the ordinal brain mets had a reoccurrence.
My Mom had no cognitive decline and she had what they called an abscopal effect where the immunotherapy worked with the SRS and she got a better outcome.
Fewer people are pushing WBRT because of the cognitive side effects and the little long term benefit that patients get when compared to SRS (gamma knife).
-
- September 29, 2016 at 2:00 pm
Yes it is whole brain . There were 7 mets biggest 2.5 cm. Where we are they do not do gamma knife. -
- September 27, 2016 at 8:08 pm
Patina , praise first your mom!!!! Thank you sooo much for the words . You have given me encouragement!!! Wow , I love to hear this. He is starting radiation today and they are giving him kepra. I truly thank you for response. Bless you and your mom -
- September 27, 2016 at 8:08 pm
Patina , praise first your mom!!!! Thank you sooo much for the words . You have given me encouragement!!! Wow , I love to hear this. He is starting radiation today and they are giving him kepra. I truly thank you for response. Bless you and your mom
-
- September 27, 2016 at 7:30 pm
Make sure you husband in on Keppra for seizure's. No driving for him.
Find the best radiation oncologist you can find and get an appointment ASAP. They may be able treat some of these with gamma knife radiation and/or do a craniotomy for large brain mets.
My Mom has had 28 of these in all and when she started this she had gamma knife radiation and Yervoy 4 days later, then gamma knife again for more brain mets. She eventually had a reoccurrence and ended up on Keytruda and will end that in about a year. She is now 80 and its been basically a walk in the park for her. But it wouldn't have been if we didn't end up with a awesome team and we make sure we had aggressive treatment for the brain mets.
Good Luck!
-
- September 27, 2016 at 7:30 pm
Make sure you husband in on Keppra for seizure's. No driving for him.
Find the best radiation oncologist you can find and get an appointment ASAP. They may be able treat some of these with gamma knife radiation and/or do a craniotomy for large brain mets.
My Mom has had 28 of these in all and when she started this she had gamma knife radiation and Yervoy 4 days later, then gamma knife again for more brain mets. She eventually had a reoccurrence and ended up on Keytruda and will end that in about a year. She is now 80 and its been basically a walk in the park for her. But it wouldn't have been if we didn't end up with a awesome team and we make sure we had aggressive treatment for the brain mets.
Good Luck!
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- September 28, 2016 at 9:48 am
Hi Cathy,
Sorry you and your husband are dealing with this. The combination of immunotherapy with SRS to brain mets has been found to be a very effective treatment for many with melanoma brain mets. I am one of those. There are many articles discussing this on my blog. Here is just one, which also points out that the sooner immunotherapy is started after radiation the better: http://chaoticallypreciselifeloveandmelanoma.blogspot.fr/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
Yes, your husband will probably need an anti-seizure medication, at least for a while. Keppra is one such medication, but there are many that are effective and appropriate.
I wish you and your husband my best. Celeste
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- September 28, 2016 at 9:48 am
Hi Cathy,
Sorry you and your husband are dealing with this. The combination of immunotherapy with SRS to brain mets has been found to be a very effective treatment for many with melanoma brain mets. I am one of those. There are many articles discussing this on my blog. Here is just one, which also points out that the sooner immunotherapy is started after radiation the better: http://chaoticallypreciselifeloveandmelanoma.blogspot.fr/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
Yes, your husband will probably need an anti-seizure medication, at least for a while. Keppra is one such medication, but there are many that are effective and appropriate.
I wish you and your husband my best. Celeste
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- September 28, 2016 at 1:27 pm
Thank you Celeste, I must say I truly think of you as our inspiration. Thank you for your reply. He has began radiation and hope to start keytruda. I have actually told some of your story to doctor here , wanting to share the positive hope. Thank you again -
- September 28, 2016 at 1:27 pm
Thank you Celeste, I must say I truly think of you as our inspiration. Thank you for your reply. He has began radiation and hope to start keytruda. I have actually told some of your story to doctor here , wanting to share the positive hope. Thank you again -
- September 28, 2016 at 1:27 pm
Thank you Celeste, I must say I truly think of you as our inspiration. Thank you for your reply. He has began radiation and hope to start keytruda. I have actually told some of your story to doctor here , wanting to share the positive hope. Thank you again
-
- September 28, 2016 at 9:48 am
Hi Cathy,
Sorry you and your husband are dealing with this. The combination of immunotherapy with SRS to brain mets has been found to be a very effective treatment for many with melanoma brain mets. I am one of those. There are many articles discussing this on my blog. Here is just one, which also points out that the sooner immunotherapy is started after radiation the better: http://chaoticallypreciselifeloveandmelanoma.blogspot.fr/2016/06/brain-mets-in-melanoma-dont-wait-to-add.html
Yes, your husband will probably need an anti-seizure medication, at least for a while. Keppra is one such medication, but there are many that are effective and appropriate.
I wish you and your husband my best. Celeste
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- September 28, 2016 at 12:09 pm
Hi Cathy,
Where are you located? I agree his best bet is to find the best cancer center your insurance allows and have him treated by a melanoma team that includes a brain surgeon for the largest met and SRS for the rest. I had 5 brain mets with 2 craniotimies this past summer plus SRS and am still here and still "all me" cognitively! So stay hopeful but do your research and get your husband in competent hands.
Hang in there!!
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- September 28, 2016 at 12:09 pm
Hi Cathy,
Where are you located? I agree his best bet is to find the best cancer center your insurance allows and have him treated by a melanoma team that includes a brain surgeon for the largest met and SRS for the rest. I had 5 brain mets with 2 craniotimies this past summer plus SRS and am still here and still "all me" cognitively! So stay hopeful but do your research and get your husband in competent hands.
Hang in there!!
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- September 28, 2016 at 12:41 pm
Hi Maria, thank you for reply. We are in central Illinois, small north of Springfield. He has been traveling to Chicago at cancer center of America. Since this has happened we are staying local to do radiation. Plan is radiation for 2 weeks then hopefully keytruda will start. We are debating continue care here if they can offer keytruda. Thank you again -
- September 28, 2016 at 12:41 pm
Hi Maria, thank you for reply. We are in central Illinois, small north of Springfield. He has been traveling to Chicago at cancer center of America. Since this has happened we are staying local to do radiation. Plan is radiation for 2 weeks then hopefully keytruda will start. We are debating continue care here if they can offer keytruda. Thank you again -
- September 28, 2016 at 12:41 pm
Hi Maria, thank you for reply. We are in central Illinois, small north of Springfield. He has been traveling to Chicago at cancer center of America. Since this has happened we are staying local to do radiation. Plan is radiation for 2 weeks then hopefully keytruda will start. We are debating continue care here if they can offer keytruda. Thank you again
-
- September 28, 2016 at 12:09 pm
Hi Cathy,
Where are you located? I agree his best bet is to find the best cancer center your insurance allows and have him treated by a melanoma team that includes a brain surgeon for the largest met and SRS for the rest. I had 5 brain mets with 2 craniotimies this past summer plus SRS and am still here and still "all me" cognitively! So stay hopeful but do your research and get your husband in competent hands.
Hang in there!!
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