› Forums › General Melanoma Community › MRI of the Brain
- This topic has 15 replies, 4 voices, and was last updated 11 years, 1 month ago by Tina D.
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- March 8, 2013 at 6:28 am
Scott has been on Zelboraf eleven months today,and while "Z" has been taking care of shrinking and stabilizing the mets to the rest of his body, it couldn't protect the brain. Unfortunately, the result of the MRI showed extensive leptomeningeal disease has developed. We really didn't know what it means but it was explained to us that lesions were in the liquid part in the intracranial part of the brain. I'm not sure if I got the exact layman's terms here.
Scott has been on Zelboraf eleven months today,and while "Z" has been taking care of shrinking and stabilizing the mets to the rest of his body, it couldn't protect the brain. Unfortunately, the result of the MRI showed extensive leptomeningeal disease has developed. We really didn't know what it means but it was explained to us that lesions were in the liquid part in the intracranial part of the brain. I'm not sure if I got the exact layman's terms here. In other words…Brain Mets? Got a call from the Onc's office today to meet next week for possible treatment with the Radiology Oncologist, Neurological Oncologist? and later Neuro Surgeon. It was suggested WBR . Gamma knife. I have been teaching my husband the terminologies I have learned from this site, it's all new to him of course, it's all new to me too, but he won't forget NED. My problem is, he is too exhausted and too weak to fight anymore. He doesn't like to hear the words radiations and trials….and I don't know what else is there for him. So sad.
Cielo
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- March 8, 2013 at 10:20 am
So sorry Scott and yourself have negative news.Now he wants to be NED but is does not come easy or without a price.Praying that he finds the strenght and mindset to continue to battle melanoma.All the best in your continued efforts to Beat the Beast. Al
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- March 8, 2013 at 10:20 am
So sorry Scott and yourself have negative news.Now he wants to be NED but is does not come easy or without a price.Praying that he finds the strenght and mindset to continue to battle melanoma.All the best in your continued efforts to Beat the Beast. Al
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- March 8, 2013 at 10:20 am
So sorry Scott and yourself have negative news.Now he wants to be NED but is does not come easy or without a price.Praying that he finds the strenght and mindset to continue to battle melanoma.All the best in your continued efforts to Beat the Beast. Al
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- March 8, 2013 at 1:12 pm
Oh, Cielo! I am so sorry for this disappointing news! You and Scott have put up a tremendous fight and have managed to beat back the beast so many times! I have nothing but admiration for the both of you. I don't know what treatment will be the best for him now, but I pray that you both continue to have the peace and love you both deserve.
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- March 10, 2013 at 2:00 pm
When my brother was first diagnosed, he was already stage IV with mets all over his body, including his brain. His doctors' main concern was that one of the brain tumors would start to bleed (a common occurence with melanoma) so they recommended whole brain radiation and my brother agreed. Two weeks after the WBR he started Zelboarf. Melanoma is notoriously resistant to radiation. However, by the beginning of September, all of his tumors, including the brain tumors, were shrinking or gone. Whether this was due to WBR or Zelboraf or both I don't know. A month later, while still on Zelboraf, he developed one new brain tumor. That was treated with gamma knife surgery and he continued on Zelboraf.
The whole brain radiation did result in side effects, some of which the doctors didn't tell us about because they didn't expect my brother to live long enough to experience them. The WBR made him very very tired, but that eased up after 2 or 3 weeks. Long-term, his short-term memory was impaired and his hearing was impaired– he said it felt like he had cotton in his ears all the time. His thinking slowed down and he forgot how to do many things like how to use his computer to check his email or do online banking. He sometimes got lost, even when driving on familiar routes. It was sort of like living with someone who is mildly retarded. Considering that the WBR plus Zelboarf kept him alive and without pain, I think it was a good trade. The gamma knife surgery on the one brain tumor did not seem to cause him any difficulty or worsen the side effects. That treatment was much easier on him.
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- March 10, 2013 at 2:00 pm
When my brother was first diagnosed, he was already stage IV with mets all over his body, including his brain. His doctors' main concern was that one of the brain tumors would start to bleed (a common occurence with melanoma) so they recommended whole brain radiation and my brother agreed. Two weeks after the WBR he started Zelboarf. Melanoma is notoriously resistant to radiation. However, by the beginning of September, all of his tumors, including the brain tumors, were shrinking or gone. Whether this was due to WBR or Zelboraf or both I don't know. A month later, while still on Zelboraf, he developed one new brain tumor. That was treated with gamma knife surgery and he continued on Zelboraf.
The whole brain radiation did result in side effects, some of which the doctors didn't tell us about because they didn't expect my brother to live long enough to experience them. The WBR made him very very tired, but that eased up after 2 or 3 weeks. Long-term, his short-term memory was impaired and his hearing was impaired– he said it felt like he had cotton in his ears all the time. His thinking slowed down and he forgot how to do many things like how to use his computer to check his email or do online banking. He sometimes got lost, even when driving on familiar routes. It was sort of like living with someone who is mildly retarded. Considering that the WBR plus Zelboarf kept him alive and without pain, I think it was a good trade. The gamma knife surgery on the one brain tumor did not seem to cause him any difficulty or worsen the side effects. That treatment was much easier on him.
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- March 10, 2013 at 2:00 pm
When my brother was first diagnosed, he was already stage IV with mets all over his body, including his brain. His doctors' main concern was that one of the brain tumors would start to bleed (a common occurence with melanoma) so they recommended whole brain radiation and my brother agreed. Two weeks after the WBR he started Zelboarf. Melanoma is notoriously resistant to radiation. However, by the beginning of September, all of his tumors, including the brain tumors, were shrinking or gone. Whether this was due to WBR or Zelboraf or both I don't know. A month later, while still on Zelboraf, he developed one new brain tumor. That was treated with gamma knife surgery and he continued on Zelboraf.
The whole brain radiation did result in side effects, some of which the doctors didn't tell us about because they didn't expect my brother to live long enough to experience them. The WBR made him very very tired, but that eased up after 2 or 3 weeks. Long-term, his short-term memory was impaired and his hearing was impaired– he said it felt like he had cotton in his ears all the time. His thinking slowed down and he forgot how to do many things like how to use his computer to check his email or do online banking. He sometimes got lost, even when driving on familiar routes. It was sort of like living with someone who is mildly retarded. Considering that the WBR plus Zelboarf kept him alive and without pain, I think it was a good trade. The gamma knife surgery on the one brain tumor did not seem to cause him any difficulty or worsen the side effects. That treatment was much easier on him.
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- March 8, 2013 at 1:12 pm
Oh, Cielo! I am so sorry for this disappointing news! You and Scott have put up a tremendous fight and have managed to beat back the beast so many times! I have nothing but admiration for the both of you. I don't know what treatment will be the best for him now, but I pray that you both continue to have the peace and love you both deserve.
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- March 8, 2013 at 1:12 pm
Oh, Cielo! I am so sorry for this disappointing news! You and Scott have put up a tremendous fight and have managed to beat back the beast so many times! I have nothing but admiration for the both of you. I don't know what treatment will be the best for him now, but I pray that you both continue to have the peace and love you both deserve.
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- March 12, 2013 at 12:54 pm
Cielo,
So sorry you have gotten these reports… and I can only imagine the weight on your heart as you carry the burden for the both of you and do your best to explore all the options for an exhausted husband. Caregivers are such special people & I hope you also have some help and support for yourself as you try to manage everything. I know there are several on here who have had good success with brain radiation, specifically the gamma knife. It can all seem so scary… maybe you can contact those people on here specifically who have had that treatment. By now, it seems, you probably have had that consult appt — did they offer you any new information or make a suggestion for what treatment? One thing that is hard while on the Zelboraf, I know I felt utterly exhausted all the time, and that makes it hard to deal with any additional issues. Even though the fatigue was not coming from the melanoma, it still took a toll on the every day.
Hoping you are finding the answers and help you both need,
Tina
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- March 12, 2013 at 12:54 pm
Cielo,
So sorry you have gotten these reports… and I can only imagine the weight on your heart as you carry the burden for the both of you and do your best to explore all the options for an exhausted husband. Caregivers are such special people & I hope you also have some help and support for yourself as you try to manage everything. I know there are several on here who have had good success with brain radiation, specifically the gamma knife. It can all seem so scary… maybe you can contact those people on here specifically who have had that treatment. By now, it seems, you probably have had that consult appt — did they offer you any new information or make a suggestion for what treatment? One thing that is hard while on the Zelboraf, I know I felt utterly exhausted all the time, and that makes it hard to deal with any additional issues. Even though the fatigue was not coming from the melanoma, it still took a toll on the every day.
Hoping you are finding the answers and help you both need,
Tina
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- March 12, 2013 at 12:54 pm
Cielo,
So sorry you have gotten these reports… and I can only imagine the weight on your heart as you carry the burden for the both of you and do your best to explore all the options for an exhausted husband. Caregivers are such special people & I hope you also have some help and support for yourself as you try to manage everything. I know there are several on here who have had good success with brain radiation, specifically the gamma knife. It can all seem so scary… maybe you can contact those people on here specifically who have had that treatment. By now, it seems, you probably have had that consult appt — did they offer you any new information or make a suggestion for what treatment? One thing that is hard while on the Zelboraf, I know I felt utterly exhausted all the time, and that makes it hard to deal with any additional issues. Even though the fatigue was not coming from the melanoma, it still took a toll on the every day.
Hoping you are finding the answers and help you both need,
Tina
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