› Forums › General Melanoma Community › Brain Mets, Seziures, and now fever.
- This topic has 33 replies, 4 voices, and was last updated 7 years, 7 months ago by
keepthefaith11.
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- September 19, 2016 at 10:50 am
Hi everyone, well, things are not going too well here with my dad. He was doing fantastic and all ready to start Opdivo last Friday. But last Monday he ended up in the hospital with another seizure. He had not had one for over 2 months and things seemed really good. Brain scan showed stable and some regression of the tumors. Doctors where pleased with results from the radiation so far.Then this. He’s in the hospital and it’s now been a week since the seizure and his speech is still really poor. He has a hard time using his right hand as well. I am so worried that he now has permanent damage from seizures. Can this happen?
Then he started developing a fever. Very mild and it comes and goes through the day. They did a chest x-ray, check his blood work, and took cultures. That has not come back with results yet but everything else was perfectly normal. Of course, now he has not been able to start treatment because of the fever. It just seems like things are not cooperating at all. What could this fever be from if it’s not infection? I have read about tumor inducing fevers. But I don’t think it is from them growing since they were not. I also read about something called neoplastic fevers. Do to necrosis. Anybody know anything about this?
I am extremely worried about his mental state after the seizure. After the last one in July he also had speech issues, but it did not last as long I think.
Thank you to anybody who can respond to this. I am extremely concerned!
Annie
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- September 19, 2016 at 11:04 am
Wanted to add that when they saw that he had trouble with his right arm, they ended up doing another brain scan to check for bleeding. None of the tumors were bleeding and there was no other bleading as well. Might be from the seizures? -
- September 19, 2016 at 11:04 am
Wanted to add that when they saw that he had trouble with his right arm, they ended up doing another brain scan to check for bleeding. None of the tumors were bleeding and there was no other bleading as well. Might be from the seizures? -
- September 19, 2016 at 11:04 am
Wanted to add that when they saw that he had trouble with his right arm, they ended up doing another brain scan to check for bleeding. None of the tumors were bleeding and there was no other bleading as well. Might be from the seizures? -
- September 19, 2016 at 3:19 pm
Annie I am so sorry, I hate this dang melanoma roller coaster! Feel ok one day, ready for the next step, and then it takes an unexpected turn. Sending love and positive thoughts as always.
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- September 19, 2016 at 11:37 pm
Thanks for the support Jen! He was much better today as far as speech and behavior. Even shaved himself.Nurses were commenting on this as well. They have decided to start him on Opdivo tomorrow since the fever does not seem to be related to an illness and his bloodwork looks great. So here we go. Praying this will work.Annie
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- September 19, 2016 at 11:37 pm
Thanks for the support Jen! He was much better today as far as speech and behavior. Even shaved himself.Nurses were commenting on this as well. They have decided to start him on Opdivo tomorrow since the fever does not seem to be related to an illness and his bloodwork looks great. So here we go. Praying this will work.Annie
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- September 20, 2016 at 12:35 am
That’s good news, hoping for good results! -
- September 20, 2016 at 12:35 am
That’s good news, hoping for good results! -
- September 20, 2016 at 1:32 pm
Thank you Jen! -
- September 20, 2016 at 1:32 pm
Thank you Jen! -
- September 20, 2016 at 1:32 pm
Thank you Jen! -
- September 20, 2016 at 12:35 am
That’s good news, hoping for good results! -
- September 20, 2016 at 1:32 pm
Thank you Brian! -
- September 20, 2016 at 1:32 pm
Thank you Brian! -
- September 20, 2016 at 1:32 pm
Thank you Brian! -
- September 19, 2016 at 11:37 pm
Thanks for the support Jen! He was much better today as far as speech and behavior. Even shaved himself.Nurses were commenting on this as well. They have decided to start him on Opdivo tomorrow since the fever does not seem to be related to an illness and his bloodwork looks great. So here we go. Praying this will work.Annie
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- September 19, 2016 at 3:19 pm
Annie I am so sorry, I hate this dang melanoma roller coaster! Feel ok one day, ready for the next step, and then it takes an unexpected turn. Sending love and positive thoughts as always.
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- September 19, 2016 at 3:19 pm
Annie I am so sorry, I hate this dang melanoma roller coaster! Feel ok one day, ready for the next step, and then it takes an unexpected turn. Sending love and positive thoughts as always.
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- September 20, 2016 at 1:51 am
Hi Annie,
The sudden neuro changes can be really rough. Dont get discouraged and stay strong! I've seen similar symptoms in my family member who had brain mets and experienced fevers as a treatment side effect. Symptoms very similar to the ones you described: loss of right arm movement, speech challenges, confusion, little strength, etc. We were explained by a neurosurgeon that if a patient has brain mets and a history of bleedings or tumors, those areas of the brain can become sensitive when the patient develops a fever. The recovery took a week to two but all functions did come back! By the way, increasing (for a short while) steroids (decadron) and Keppra dosage proved helpful for us as well. In reducing the fever and side effects, a bolus of fluids at the hospital worked miracles.
Hoping the same for you guys. Hang in there! And do what you can to keep your dad's spirits up, humor can be a great medicine 🙂
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- September 20, 2016 at 1:51 am
Hi Annie,
The sudden neuro changes can be really rough. Dont get discouraged and stay strong! I've seen similar symptoms in my family member who had brain mets and experienced fevers as a treatment side effect. Symptoms very similar to the ones you described: loss of right arm movement, speech challenges, confusion, little strength, etc. We were explained by a neurosurgeon that if a patient has brain mets and a history of bleedings or tumors, those areas of the brain can become sensitive when the patient develops a fever. The recovery took a week to two but all functions did come back! By the way, increasing (for a short while) steroids (decadron) and Keppra dosage proved helpful for us as well. In reducing the fever and side effects, a bolus of fluids at the hospital worked miracles.
Hoping the same for you guys. Hang in there! And do what you can to keep your dad's spirits up, humor can be a great medicine 🙂
-
- September 20, 2016 at 1:44 pm
Thank you so much. Yes, the neuro effects are just awful and so scary to deal with.He never had any bleeding thankfully so I am assuming the new seziure episode was caused by the tumors. Although they had not grown. And there was no new ones. Not sure why all of a sudden this would happen. There was talk about edema around the tumors but no severe swelling was seen on the scan.
He had his first infusion of Opdivo today. What is the earliest it would start to show if it works? My hope is that he will be a responder and the brain mets will reduce to give his brain some relief, which will help with the seziures. So scary to be in such a dark place but at least we are greatful there is no disease anywhere else. Doctor mentioned Yervoy might possibly be doing its job in the rest of the body, but then why not in the brain?
Annie
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- September 20, 2016 at 1:44 pm
Thank you so much. Yes, the neuro effects are just awful and so scary to deal with.He never had any bleeding thankfully so I am assuming the new seziure episode was caused by the tumors. Although they had not grown. And there was no new ones. Not sure why all of a sudden this would happen. There was talk about edema around the tumors but no severe swelling was seen on the scan.
He had his first infusion of Opdivo today. What is the earliest it would start to show if it works? My hope is that he will be a responder and the brain mets will reduce to give his brain some relief, which will help with the seziures. So scary to be in such a dark place but at least we are greatful there is no disease anywhere else. Doctor mentioned Yervoy might possibly be doing its job in the rest of the body, but then why not in the brain?
Annie
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- September 21, 2016 at 10:30 pm
Hi again Annie.
I'm so sorry your family are going through this. It can be a dark and scary place for sure, I'm happy to hear that you and your family are a light to your dad in this hard time!
Great to hear that he has not experienced any bleedings. From what we were told, seizures can also occur when treatment is working in the brain and edema can result when tumors are shrinking. If you're not seeing new or growing tumors, perhaps this can explain?
We learned that being proactive with brain treatment was extremely important. Even if immunotherapy works in the body, it can take some time to cross the blood brain barrier and work in the brain. Do you have a radiation oncologist onboard your team? Is your dad BRAF positive? Our experience was that having a second treatment that worked quickly in the brain (such as radiation or targeted therapy), to supplement immunotherapy, was beneficial.
Hang in there!
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- September 21, 2016 at 10:30 pm
Hi again Annie.
I'm so sorry your family are going through this. It can be a dark and scary place for sure, I'm happy to hear that you and your family are a light to your dad in this hard time!
Great to hear that he has not experienced any bleedings. From what we were told, seizures can also occur when treatment is working in the brain and edema can result when tumors are shrinking. If you're not seeing new or growing tumors, perhaps this can explain?
We learned that being proactive with brain treatment was extremely important. Even if immunotherapy works in the body, it can take some time to cross the blood brain barrier and work in the brain. Do you have a radiation oncologist onboard your team? Is your dad BRAF positive? Our experience was that having a second treatment that worked quickly in the brain (such as radiation or targeted therapy), to supplement immunotherapy, was beneficial.
Hang in there!
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- September 22, 2016 at 5:35 pm
Thank you so much for your response! This is exactly what I was thinking. That’s the radiation is working in the brain causing edema which in turn might have triggered the seizures.The problem is that he is having such severe neurological effects from the seizures. The neurologist keeps saying it’s from the brain tumors, but he had no issues until the seizures. The neurologist is not the nicest of people and talks in a very negative way. He pretty much came back 100% from the past seizures in July. And he was in pretty bad shape then as well. This time the recovery seems a bit slower but he is making progress daily.
He is now walking without support and able to eat with his right hand again. He does Mumble a lot when he speaks trying to explain himself, but is definitely making much more sense now than he did a few days ago.
My dad is being treated at a research hospital in Europe. He is under the care of 2 melanoma experts. I live in America so I am not right there with him, but I did meet with the doctor when I took a trip there in August and they seem to know what they’re talking about. I have also been in contact with the doctor via email. They had mentioned doing gamma knife radiation but did not feel it was necessary at this point since the scan after the whole brain radiation showed stable disease. But it is definitely something that they would do should they see a progression of the tumors.
He is BRAF positive but the plan was to see what his scan showed and since he was stable they feel they have enough time to let the immunotherapy kick in. There was definitely mention about the inhibitors but only if the tumors did not seem to have responded to radiation. Seems they want to keep this treatment in their back pocket should he get more systemic disease. Right now it is in his brain, but nowhere else. I have wondered that starting the Inhibitors would have been good in a way since it would have reduced the tumors quickly and therefore made it less likely that he would have more seizures. But I also see their point. They are aware that if he does not seem to respond to immunotherapy and his disease progresses, they will switch to the inhibitors.
How does all this sound to you?
Annie
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- September 22, 2016 at 5:35 pm
Thank you so much for your response! This is exactly what I was thinking. That’s the radiation is working in the brain causing edema which in turn might have triggered the seizures.The problem is that he is having such severe neurological effects from the seizures. The neurologist keeps saying it’s from the brain tumors, but he had no issues until the seizures. The neurologist is not the nicest of people and talks in a very negative way. He pretty much came back 100% from the past seizures in July. And he was in pretty bad shape then as well. This time the recovery seems a bit slower but he is making progress daily.
He is now walking without support and able to eat with his right hand again. He does Mumble a lot when he speaks trying to explain himself, but is definitely making much more sense now than he did a few days ago.
My dad is being treated at a research hospital in Europe. He is under the care of 2 melanoma experts. I live in America so I am not right there with him, but I did meet with the doctor when I took a trip there in August and they seem to know what they’re talking about. I have also been in contact with the doctor via email. They had mentioned doing gamma knife radiation but did not feel it was necessary at this point since the scan after the whole brain radiation showed stable disease. But it is definitely something that they would do should they see a progression of the tumors.
He is BRAF positive but the plan was to see what his scan showed and since he was stable they feel they have enough time to let the immunotherapy kick in. There was definitely mention about the inhibitors but only if the tumors did not seem to have responded to radiation. Seems they want to keep this treatment in their back pocket should he get more systemic disease. Right now it is in his brain, but nowhere else. I have wondered that starting the Inhibitors would have been good in a way since it would have reduced the tumors quickly and therefore made it less likely that he would have more seizures. But I also see their point. They are aware that if he does not seem to respond to immunotherapy and his disease progresses, they will switch to the inhibitors.
How does all this sound to you?
Annie
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- September 22, 2016 at 5:35 pm
Thank you so much for your response! This is exactly what I was thinking. That’s the radiation is working in the brain causing edema which in turn might have triggered the seizures.The problem is that he is having such severe neurological effects from the seizures. The neurologist keeps saying it’s from the brain tumors, but he had no issues until the seizures. The neurologist is not the nicest of people and talks in a very negative way. He pretty much came back 100% from the past seizures in July. And he was in pretty bad shape then as well. This time the recovery seems a bit slower but he is making progress daily.
He is now walking without support and able to eat with his right hand again. He does Mumble a lot when he speaks trying to explain himself, but is definitely making much more sense now than he did a few days ago.
My dad is being treated at a research hospital in Europe. He is under the care of 2 melanoma experts. I live in America so I am not right there with him, but I did meet with the doctor when I took a trip there in August and they seem to know what they’re talking about. I have also been in contact with the doctor via email. They had mentioned doing gamma knife radiation but did not feel it was necessary at this point since the scan after the whole brain radiation showed stable disease. But it is definitely something that they would do should they see a progression of the tumors.
He is BRAF positive but the plan was to see what his scan showed and since he was stable they feel they have enough time to let the immunotherapy kick in. There was definitely mention about the inhibitors but only if the tumors did not seem to have responded to radiation. Seems they want to keep this treatment in their back pocket should he get more systemic disease. Right now it is in his brain, but nowhere else. I have wondered that starting the Inhibitors would have been good in a way since it would have reduced the tumors quickly and therefore made it less likely that he would have more seizures. But I also see their point. They are aware that if he does not seem to respond to immunotherapy and his disease progresses, they will switch to the inhibitors.
How does all this sound to you?
Annie
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- September 21, 2016 at 10:30 pm
Hi again Annie.
I'm so sorry your family are going through this. It can be a dark and scary place for sure, I'm happy to hear that you and your family are a light to your dad in this hard time!
Great to hear that he has not experienced any bleedings. From what we were told, seizures can also occur when treatment is working in the brain and edema can result when tumors are shrinking. If you're not seeing new or growing tumors, perhaps this can explain?
We learned that being proactive with brain treatment was extremely important. Even if immunotherapy works in the body, it can take some time to cross the blood brain barrier and work in the brain. Do you have a radiation oncologist onboard your team? Is your dad BRAF positive? Our experience was that having a second treatment that worked quickly in the brain (such as radiation or targeted therapy), to supplement immunotherapy, was beneficial.
Hang in there!
-
- September 20, 2016 at 1:44 pm
Thank you so much. Yes, the neuro effects are just awful and so scary to deal with.He never had any bleeding thankfully so I am assuming the new seziure episode was caused by the tumors. Although they had not grown. And there was no new ones. Not sure why all of a sudden this would happen. There was talk about edema around the tumors but no severe swelling was seen on the scan.
He had his first infusion of Opdivo today. What is the earliest it would start to show if it works? My hope is that he will be a responder and the brain mets will reduce to give his brain some relief, which will help with the seziures. So scary to be in such a dark place but at least we are greatful there is no disease anywhere else. Doctor mentioned Yervoy might possibly be doing its job in the rest of the body, but then why not in the brain?
Annie
-
- September 20, 2016 at 1:51 am
Hi Annie,
The sudden neuro changes can be really rough. Dont get discouraged and stay strong! I've seen similar symptoms in my family member who had brain mets and experienced fevers as a treatment side effect. Symptoms very similar to the ones you described: loss of right arm movement, speech challenges, confusion, little strength, etc. We were explained by a neurosurgeon that if a patient has brain mets and a history of bleedings or tumors, those areas of the brain can become sensitive when the patient develops a fever. The recovery took a week to two but all functions did come back! By the way, increasing (for a short while) steroids (decadron) and Keppra dosage proved helpful for us as well. In reducing the fever and side effects, a bolus of fluids at the hospital worked miracles.
Hoping the same for you guys. Hang in there! And do what you can to keep your dad's spirits up, humor can be a great medicine 🙂
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