› Forums › General Melanoma Community › Anyone have symptoms with brain mets?
- This topic has 21 replies, 5 voices, and was last updated 8 years ago by
MoiraM.
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- April 22, 2016 at 9:22 pm
Hello everyone –
I am stage 4a, on nivo for 6 months, and have questions for anyone who had/has brain mets that were sympotmatic. I have my next infusion on Tuesday and will be asking my oncologist about this then, but she won't know about patients' experience.
I know and don't expect anyone to be able to tell me if I need to be worried, but sometimes it just helps to share an experience with those who get it, you know?
So, for about a week now I have been waking up every morning with a bad headache. Already a migraine sufferer, I wasn't all that worried at first. These don't feel like my migraines as they are across my head (behnd my eyes mostly) rather than in one localized area. I also get nauseated and have actually been nauseated all day every day for this week. OTC meds take the edge off the headaches, which is good.
The other thing – and the thing that actually concerns me – is the dizziness and the difficulty I seem to be having reading on the computer. (I teach online so I do spend a lot of time on the computer, but no more than usual these past months). I cannot follow the page when I scroll without squinting and I always feel like there is a slight – I don't even know how to describe it – pressure? in my head behind my eyes making it difficult to focus mentally. I wish I could describe it better. It feels like a heavy "fog" that makes my eyes feel unfocused and my brain slow and awkward.
I've had days with this inability to focus occasionally throughout my life – but never all day every day for an entire week. This seemed to just come up out of the blue last weekend and I'm feeling a little stressed about it. Could it be some kind of delayed side effect of the nivo?
Again, I know that no one can say if this is even anything except my doctor and probably some scans, but if anyone can share experiences that may be similar, I think I would feel better. Or at least I won't feel alone.
Thank you for listening.
- Replies
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- April 22, 2016 at 10:10 pm
Hi Christne,
i have just had SRS treatment for a brain met which was found on my last scan. I can only say at the time I had sinus issues headache across both my eyes. I cannot say if it was the brain met or sinus issues to be honest. I work on a computer at work which requires a lot of consatration as I deal with accounts.
my brain met was 5.5mm so not sure if it was enough to cause me problems or not. I am sure lots of the guys who have had or are dealing with brain mets can give you more info . It is all new to me at present just getting over the treatment and resting. I have had a few headaches since treatment but side effects of treatment can cause this from what I have read. I will be speaking to my consultant next Thursday.
Scooby123❤️
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- April 22, 2016 at 10:10 pm
Hi Christne,
i have just had SRS treatment for a brain met which was found on my last scan. I can only say at the time I had sinus issues headache across both my eyes. I cannot say if it was the brain met or sinus issues to be honest. I work on a computer at work which requires a lot of consatration as I deal with accounts.
my brain met was 5.5mm so not sure if it was enough to cause me problems or not. I am sure lots of the guys who have had or are dealing with brain mets can give you more info . It is all new to me at present just getting over the treatment and resting. I have had a few headaches since treatment but side effects of treatment can cause this from what I have read. I will be speaking to my consultant next Thursday.
Scooby123❤️
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- April 22, 2016 at 10:10 pm
Hi Christne,
i have just had SRS treatment for a brain met which was found on my last scan. I can only say at the time I had sinus issues headache across both my eyes. I cannot say if it was the brain met or sinus issues to be honest. I work on a computer at work which requires a lot of consatration as I deal with accounts.
my brain met was 5.5mm so not sure if it was enough to cause me problems or not. I am sure lots of the guys who have had or are dealing with brain mets can give you more info . It is all new to me at present just getting over the treatment and resting. I have had a few headaches since treatment but side effects of treatment can cause this from what I have read. I will be speaking to my consultant next Thursday.
Scooby123❤️
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- April 22, 2016 at 10:56 pm
Thank you, Scooby. I appreciate your answer.
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- April 22, 2016 at 11:06 pm
Hi Christine,
I originally thought my headaches were from too much computer time for work. I went to an eye doctor and was prescribed a very slight glasses prescription that “might” be able to help.
Within a few weeks the headaches would come from exercise or exertion and could last multiple days. Lots of naps (or staying in bed trying to nap)and Aleve.
One day, I took my children to a convenience store and opened the commercial refrigerator and the coldness hit my head like an explosion and I could barely walk to the car. It happened again another day when I opened the freezer at my home.
Then headaches came with nausea. I had seen my general practitioner twice complaining of headaches and swollen glands in my neck. The third time I vomited all over his office – that was when he sent me for an MRI – where we found the 3 brain mets.
I currently have 9 brain mets that have been treated with cyberknife and I seem to always have a mild headache – normally behind my eyes or at the original craniotomy site. It could be stress, sinus issues, or just that there is a lot of activity with three children.
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- April 23, 2016 at 2:38 am
Also, I had what I refer to as "sparkles" which are like mini muscle spasms or twitches on my left side- hands ands legs. Like electrical pulses. I have also had issues with my left leg feeling numb, sort of dragging when I walk and 1 seizure.
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- April 23, 2016 at 2:38 am
Also, I had what I refer to as "sparkles" which are like mini muscle spasms or twitches on my left side- hands ands legs. Like electrical pulses. I have also had issues with my left leg feeling numb, sort of dragging when I walk and 1 seizure.
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- April 23, 2016 at 2:38 am
Also, I had what I refer to as "sparkles" which are like mini muscle spasms or twitches on my left side- hands ands legs. Like electrical pulses. I have also had issues with my left leg feeling numb, sort of dragging when I walk and 1 seizure.
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- April 22, 2016 at 11:06 pm
Hi Christine,
I originally thought my headaches were from too much computer time for work. I went to an eye doctor and was prescribed a very slight glasses prescription that “might” be able to help.
Within a few weeks the headaches would come from exercise or exertion and could last multiple days. Lots of naps (or staying in bed trying to nap)and Aleve.
One day, I took my children to a convenience store and opened the commercial refrigerator and the coldness hit my head like an explosion and I could barely walk to the car. It happened again another day when I opened the freezer at my home.
Then headaches came with nausea. I had seen my general practitioner twice complaining of headaches and swollen glands in my neck. The third time I vomited all over his office – that was when he sent me for an MRI – where we found the 3 brain mets.
I currently have 9 brain mets that have been treated with cyberknife and I seem to always have a mild headache – normally behind my eyes or at the original craniotomy site. It could be stress, sinus issues, or just that there is a lot of activity with three children.
-
- April 22, 2016 at 11:06 pm
Hi Christine,
I originally thought my headaches were from too much computer time for work. I went to an eye doctor and was prescribed a very slight glasses prescription that “might” be able to help.
Within a few weeks the headaches would come from exercise or exertion and could last multiple days. Lots of naps (or staying in bed trying to nap)and Aleve.
One day, I took my children to a convenience store and opened the commercial refrigerator and the coldness hit my head like an explosion and I could barely walk to the car. It happened again another day when I opened the freezer at my home.
Then headaches came with nausea. I had seen my general practitioner twice complaining of headaches and swollen glands in my neck. The third time I vomited all over his office – that was when he sent me for an MRI – where we found the 3 brain mets.
I currently have 9 brain mets that have been treated with cyberknife and I seem to always have a mild headache – normally behind my eyes or at the original craniotomy site. It could be stress, sinus issues, or just that there is a lot of activity with three children.
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- April 22, 2016 at 10:56 pm
Thank you, Scooby. I appreciate your answer.
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- April 22, 2016 at 10:56 pm
Thank you, Scooby. I appreciate your answer.
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- April 23, 2016 at 8:56 am
You may also be having symptoms of a swollen pituitary gland from the nivo. It is located right where you are describing and can put pressure on the optic nerves causing the vision and dizziness plust fatiuge / nausea. It is good to discuss this as soon as you are able with your medical team.
Call the weekend nurse because if it is due to an inflammed pituitary the damage may be permanent. They can set up an appointment ahead of time to get you worked up before your next infusion. If you don't, they may delay treatment only to do what they would get started sooner than later.
If it is due to hypophitis (inflammation of the pituitary) you won't get your next treatment. If you stay quiet so you can get the meds, it can be made worse.
Your symptoms are serious enough to at least place the call to the on-call nursing staff to get the ball rolling, but not quite get to the ER ASAP. Please call and let us know how things go.
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- April 23, 2016 at 8:56 am
You may also be having symptoms of a swollen pituitary gland from the nivo. It is located right where you are describing and can put pressure on the optic nerves causing the vision and dizziness plust fatiuge / nausea. It is good to discuss this as soon as you are able with your medical team.
Call the weekend nurse because if it is due to an inflammed pituitary the damage may be permanent. They can set up an appointment ahead of time to get you worked up before your next infusion. If you don't, they may delay treatment only to do what they would get started sooner than later.
If it is due to hypophitis (inflammation of the pituitary) you won't get your next treatment. If you stay quiet so you can get the meds, it can be made worse.
Your symptoms are serious enough to at least place the call to the on-call nursing staff to get the ball rolling, but not quite get to the ER ASAP. Please call and let us know how things go.
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- April 23, 2016 at 2:04 pm
Thank you, everyone. I appreciate you sharing your experiences with me. And, thank you, Kim, for the info on the pituitary. I will call today and when I know something, I will post an update.
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- April 23, 2016 at 2:04 pm
Thank you, everyone. I appreciate you sharing your experiences with me. And, thank you, Kim, for the info on the pituitary. I will call today and when I know something, I will post an update.
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- April 23, 2016 at 4:03 pm
Yes, it sounds like my symptoms when I had had my fourth infusion of Ipi. I did not catch on, because I had had fatigue as a side effect of infusion two and three.
By the time I relaised that there was something serious wrong, I had permanent damage to my anterior pituitary.
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- April 23, 2016 at 4:03 pm
Yes, it sounds like my symptoms when I had had my fourth infusion of Ipi. I did not catch on, because I had had fatigue as a side effect of infusion two and three.
By the time I relaised that there was something serious wrong, I had permanent damage to my anterior pituitary.
-
- April 23, 2016 at 4:03 pm
Yes, it sounds like my symptoms when I had had my fourth infusion of Ipi. I did not catch on, because I had had fatigue as a side effect of infusion two and three.
By the time I relaised that there was something serious wrong, I had permanent damage to my anterior pituitary.
-
- April 23, 2016 at 2:04 pm
Thank you, everyone. I appreciate you sharing your experiences with me. And, thank you, Kim, for the info on the pituitary. I will call today and when I know something, I will post an update.
-
- April 23, 2016 at 8:56 am
You may also be having symptoms of a swollen pituitary gland from the nivo. It is located right where you are describing and can put pressure on the optic nerves causing the vision and dizziness plust fatiuge / nausea. It is good to discuss this as soon as you are able with your medical team.
Call the weekend nurse because if it is due to an inflammed pituitary the damage may be permanent. They can set up an appointment ahead of time to get you worked up before your next infusion. If you don't, they may delay treatment only to do what they would get started sooner than later.
If it is due to hypophitis (inflammation of the pituitary) you won't get your next treatment. If you stay quiet so you can get the meds, it can be made worse.
Your symptoms are serious enough to at least place the call to the on-call nursing staff to get the ball rolling, but not quite get to the ER ASAP. Please call and let us know how things go.
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