› Forums › General Melanoma Community › Update on Brain Mets
- This topic has 21 replies, 4 voices, and was last updated 7 years, 9 months ago by
Bubbles.
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- July 7, 2016 at 2:25 pm
I just got off the phone with his doctor in Europe. She said he has 13 brain Mets that they could see on the MRI. They are between 2 millimeters and 13 millimeters. She started talking about whole brain radiation therapy. Apparently they don’t do gamma knife at that hospital. There is however a hospital in the country that does it, but usually for no more than three mets.
I kept pushing and she agreed to send his scans down there for a second opinion and see if they could do it for him. Not sure this is going to work out. It is so frustrating when you do not have options.They are doing a PET CT scan to see if there is any additional spread. His blood work was completely normal. I am assuming they checked the marker for cancer in his blood. Forgot to ask about that.
She wants to start whole brain radiation on Monday, but she said she would call me tomorrow when she finds out about the second opinion on gamma knife.
Does anybody know if whole brain radiation would get rid of tumors this size? And can they then do gamma knife on any remaining tumors?
She said they usually start targeted therapy or systemic therapy 2 weeks after radiation. Would that still give you the abscopal effect?
Thank you for your help everyone!!
Annie
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- July 8, 2016 at 12:01 am
Hi Annie,
A second opinion is highly desirable in this situation, although I recognize that time is of essence as well as your dad has been experiencing seizures. How soon will you hear back on the second opinion?
From my understanding, immunotherapy as close to radiation as possible, within the same week, is ideal. On Monday I will be starting both immunotherapy & my 5 days of radiation to the bed where I had the craniotomy…FYI, got my latest MRI results yesterday and they found another new brain met, for a total of 3 that'll need SRS plus the bed that needs 5 days of a lower dose.
Keeping you & your dad in my prayers as he may be starting his treatment the same day as I!!
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- July 8, 2016 at 12:01 am
Hi Annie,
A second opinion is highly desirable in this situation, although I recognize that time is of essence as well as your dad has been experiencing seizures. How soon will you hear back on the second opinion?
From my understanding, immunotherapy as close to radiation as possible, within the same week, is ideal. On Monday I will be starting both immunotherapy & my 5 days of radiation to the bed where I had the craniotomy…FYI, got my latest MRI results yesterday and they found another new brain met, for a total of 3 that'll need SRS plus the bed that needs 5 days of a lower dose.
Keeping you & your dad in my prayers as he may be starting his treatment the same day as I!!
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- July 8, 2016 at 12:01 am
Hi Annie,
A second opinion is highly desirable in this situation, although I recognize that time is of essence as well as your dad has been experiencing seizures. How soon will you hear back on the second opinion?
From my understanding, immunotherapy as close to radiation as possible, within the same week, is ideal. On Monday I will be starting both immunotherapy & my 5 days of radiation to the bed where I had the craniotomy…FYI, got my latest MRI results yesterday and they found another new brain met, for a total of 3 that'll need SRS plus the bed that needs 5 days of a lower dose.
Keeping you & your dad in my prayers as he may be starting his treatment the same day as I!!
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- July 8, 2016 at 2:54 pm
Maria, good luck on Monday!Since it seems they will be doing whole brain radiation for a total of 10 sessions, they said they will start either systemic or targeted treatment within 2 weeks after finishing radiation. Seems they are leaning towards BRAF inhibitors. Not sure this is the right approach but from what I read it really is up in the air to what is the best approach.
Annie
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- July 8, 2016 at 2:54 pm
Maria, good luck on Monday!Since it seems they will be doing whole brain radiation for a total of 10 sessions, they said they will start either systemic or targeted treatment within 2 weeks after finishing radiation. Seems they are leaning towards BRAF inhibitors. Not sure this is the right approach but from what I read it really is up in the air to what is the best approach.
Annie
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- July 8, 2016 at 2:54 pm
Maria, good luck on Monday!Since it seems they will be doing whole brain radiation for a total of 10 sessions, they said they will start either systemic or targeted treatment within 2 weeks after finishing radiation. Seems they are leaning towards BRAF inhibitors. Not sure this is the right approach but from what I read it really is up in the air to what is the best approach.
Annie
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- July 8, 2016 at 5:42 am
I agree, you need a second opinion. My Mom's radiation oncologist at USC gamma knifed my Mom's tumors and some were the size of your Dad's. She had 17 treated in one day. There was never any talk of whole brain radiation. She started Yervoy within 4 days of her first gamma knife treatment. But when she had a reoccurrence and had a craniotomy and then another tumor gamma knifed they had to wait 1 month to give her Keytruda.
Is your Dad taking something like Keppra? My Mom was told to take 1000mg a day and she was a zombie when we gave her 500mg in the morning and at night. Once they gave it to her all at night she turned into a person again. She had to take that for quite a while.
Your Dad should not drive for quite a while and you need to make sure that he takes his drivers tests again and the doctors sign off on it before he starts driving.
I know you are far away from him and its hard. Hope something I've said helps.
Good Luck!
PS
You might find out if he could travel back home or to somewhere else. There might be some way that this might be able to take place if he travels with medical staff.
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- July 8, 2016 at 2:51 pm
Thank you for sharing Patina. The radiologists at the other hospital agtee that gamma is not the way to go in his case. They say the leaions are too small and too spread out they are worried about accuracy and doong more damage. They say they want to get going on the whole brain radiation and if there are still lesions left after that they would consider gamma knife. Seems there are so many different opinions on this dilemma. I think all agreed that with fewer lesions gamma knife is definitely the treatment of choice. But a lot of folks seem to be skeptical about doing it with so many tumors. He makes it very difficult for us to know what to do.Yes, he is on anti-seizure medication which I think makes him a bit drowsy, although he was doing a crossword today so he must be feeling pretty well.
They said they will want to keep him on this medication for a while. Last thing we want is another seizure.Annie
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- July 8, 2016 at 2:51 pm
Thank you for sharing Patina. The radiologists at the other hospital agtee that gamma is not the way to go in his case. They say the leaions are too small and too spread out they are worried about accuracy and doong more damage. They say they want to get going on the whole brain radiation and if there are still lesions left after that they would consider gamma knife. Seems there are so many different opinions on this dilemma. I think all agreed that with fewer lesions gamma knife is definitely the treatment of choice. But a lot of folks seem to be skeptical about doing it with so many tumors. He makes it very difficult for us to know what to do.Yes, he is on anti-seizure medication which I think makes him a bit drowsy, although he was doing a crossword today so he must be feeling pretty well.
They said they will want to keep him on this medication for a while. Last thing we want is another seizure.Annie
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- July 8, 2016 at 2:51 pm
Thank you for sharing Patina. The radiologists at the other hospital agtee that gamma is not the way to go in his case. They say the leaions are too small and too spread out they are worried about accuracy and doong more damage. They say they want to get going on the whole brain radiation and if there are still lesions left after that they would consider gamma knife. Seems there are so many different opinions on this dilemma. I think all agreed that with fewer lesions gamma knife is definitely the treatment of choice. But a lot of folks seem to be skeptical about doing it with so many tumors. He makes it very difficult for us to know what to do.Yes, he is on anti-seizure medication which I think makes him a bit drowsy, although he was doing a crossword today so he must be feeling pretty well.
They said they will want to keep him on this medication for a while. Last thing we want is another seizure.Annie
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- July 8, 2016 at 5:42 am
I agree, you need a second opinion. My Mom's radiation oncologist at USC gamma knifed my Mom's tumors and some were the size of your Dad's. She had 17 treated in one day. There was never any talk of whole brain radiation. She started Yervoy within 4 days of her first gamma knife treatment. But when she had a reoccurrence and had a craniotomy and then another tumor gamma knifed they had to wait 1 month to give her Keytruda.
Is your Dad taking something like Keppra? My Mom was told to take 1000mg a day and she was a zombie when we gave her 500mg in the morning and at night. Once they gave it to her all at night she turned into a person again. She had to take that for quite a while.
Your Dad should not drive for quite a while and you need to make sure that he takes his drivers tests again and the doctors sign off on it before he starts driving.
I know you are far away from him and its hard. Hope something I've said helps.
Good Luck!
PS
You might find out if he could travel back home or to somewhere else. There might be some way that this might be able to take place if he travels with medical staff.
-
- July 8, 2016 at 5:42 am
I agree, you need a second opinion. My Mom's radiation oncologist at USC gamma knifed my Mom's tumors and some were the size of your Dad's. She had 17 treated in one day. There was never any talk of whole brain radiation. She started Yervoy within 4 days of her first gamma knife treatment. But when she had a reoccurrence and had a craniotomy and then another tumor gamma knifed they had to wait 1 month to give her Keytruda.
Is your Dad taking something like Keppra? My Mom was told to take 1000mg a day and she was a zombie when we gave her 500mg in the morning and at night. Once they gave it to her all at night she turned into a person again. She had to take that for quite a while.
Your Dad should not drive for quite a while and you need to make sure that he takes his drivers tests again and the doctors sign off on it before he starts driving.
I know you are far away from him and its hard. Hope something I've said helps.
Good Luck!
PS
You might find out if he could travel back home or to somewhere else. There might be some way that this might be able to take place if he travels with medical staff.
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- July 8, 2016 at 4:48 pm
Hey Annie,
Sorry this has been such harsh news. At this point, it seems that your dad's docs are offering the best of what they have. So, I think you can just hope for the best. I think it is fine to do either BRAFi (do try to make sure that they combine a BRAF inhibitor with a MEK inhibitor…so that he has fewer side effects and decreased rates of resistance) or immunotherapy. I would push that they start them ASAP. There is actually no need to wait until after the radiation has begun. But, you only have so much control…even when you are the patient. And…things seem to be moving along pretty well. Hang in there. Yours, Celeste
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- July 8, 2016 at 4:48 pm
Hey Annie,
Sorry this has been such harsh news. At this point, it seems that your dad's docs are offering the best of what they have. So, I think you can just hope for the best. I think it is fine to do either BRAFi (do try to make sure that they combine a BRAF inhibitor with a MEK inhibitor…so that he has fewer side effects and decreased rates of resistance) or immunotherapy. I would push that they start them ASAP. There is actually no need to wait until after the radiation has begun. But, you only have so much control…even when you are the patient. And…things seem to be moving along pretty well. Hang in there. Yours, Celeste
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- July 8, 2016 at 5:11 pm
Celeste, they keep saying they want to wait until 2 weeks after radiation because of toxicity. Does this sound like a relevant point?Annie
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- July 8, 2016 at 5:11 pm
Celeste, they keep saying they want to wait until 2 weeks after radiation because of toxicity. Does this sound like a relevant point?Annie
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- July 8, 2016 at 5:45 pm
In most of the latest studies…not really. BUT…there is the possiblity that patients MAY develop radiation necrosis when BRAFi are given concomitantly with radiation. So….2 weeks…is not such a long time…and if that is what they feel they need to do to be safe…so be it. c
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- July 8, 2016 at 5:45 pm
In most of the latest studies…not really. BUT…there is the possiblity that patients MAY develop radiation necrosis when BRAFi are given concomitantly with radiation. So….2 weeks…is not such a long time…and if that is what they feel they need to do to be safe…so be it. c
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- July 8, 2016 at 5:45 pm
In most of the latest studies…not really. BUT…there is the possiblity that patients MAY develop radiation necrosis when BRAFi are given concomitantly with radiation. So….2 weeks…is not such a long time…and if that is what they feel they need to do to be safe…so be it. c
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- July 8, 2016 at 5:11 pm
Celeste, they keep saying they want to wait until 2 weeks after radiation because of toxicity. Does this sound like a relevant point?Annie
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- July 8, 2016 at 4:48 pm
Hey Annie,
Sorry this has been such harsh news. At this point, it seems that your dad's docs are offering the best of what they have. So, I think you can just hope for the best. I think it is fine to do either BRAFi (do try to make sure that they combine a BRAF inhibitor with a MEK inhibitor…so that he has fewer side effects and decreased rates of resistance) or immunotherapy. I would push that they start them ASAP. There is actually no need to wait until after the radiation has begun. But, you only have so much control…even when you are the patient. And…things seem to be moving along pretty well. Hang in there. Yours, Celeste
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