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What are some signs of Brain Mets?

Forums General Melanoma Community What are some signs of Brain Mets?

  • Post
    EricNJill
    Participant

      Eric says that he is having problems with perifial vision.  I've noticed lately that he has been running into furniture and corners of the walls.  Yesterday when he came  home from work he had a gash and bump on his forehead.  He is a service manager at a goodyear and he said that a car was up on a lift and he ran into it.

      Eric says that he is having problems with perifial vision.  I've noticed lately that he has been running into furniture and corners of the walls.  Yesterday when he came  home from work he had a gash and bump on his forehead.  He is a service manager at a goodyear and he said that a car was up on a lift and he ran into it.

      They already had him scheduled for a Pituitary MRI because he's been so sick with vomitting and they can't figure out why.  They said it should also show up if there are any mets in the brain.  I was just wondering if this was a sign and if there were any other signs I should be looking for.

      Thanks, Jill N Eric in OH

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        bill58
        Participant

          Jill, (sorry if this gets kind of long, but i am giving you what limited information I just gathered today),

          I'm no expert, but I was diagnosed with Brain mets this week Wednesday.

          I had a ct scan with brain ct scan this week in preparation for the Braf trial on Monday 11/1.

          My oncologist called me on Wednesday to inform that the ct scan showed brain mets.

          I told her I had been having vision problems for the past week and a half.  She said it could be due to the brain mets.

          I had difficulty reading computer screens and newspapers.  the words would all jumble together.

          I talked to the neurosurgeon and the did a full brain MRI yesterday that was geared towards a very fine scan to get 400-500 different slices of the brain instead of the one I had in May that only did 20-30 slices of the entire brain.

          They looked at the MRI and found tumors in the area that would affect my vision. I met with the neurosurgeon and radiation oncologist who handles gamma knife and he did a variety of neurological tests and vision tests. In my case, I was able to follow his finger with my eyes and was able to focus on his nose while he held out his hands to test my peripheral vision.  I was able to detect which hand he was moving with my peripheral vision.

          They tested various arm movements with my eyes closed to see if I pulled to one side.

          The bottom line is brain mets can manifest themselves in a variety of symptoms, depending on what part of the brain was being pressed by the tumor.  mine was apparently affecting my fin close up visual clarity.  Other people could have their peripheral vision affected, or any other portion of their vision. It could affect motor functions, balance, hearing, garbled speech. 

          The brochure they gave me for Metastatic brain tumors and steroctactic radiosurgery (please ignore any misspellings since my vision is still not 100% and I am doing the best I can),

          – headaches that are worse in the morning or while lying down

          – seizures, which may be focal (eg starting and freezing ) or include convulsions

          – weakness or numbness in the arms or legs, including stumbling (which sounds like part of Eric's problem).unusual vomiting, blurred or double vision, difficulty thinking or Memory loss.

          My oncologist talked to the radiologist on Wednesday and prescribed steriods to help reduce the swelling of the brain tumors to help my vision.  after 2 pills on Wednesday, 2 pills on Thursday and 1 this morning, my vision seemed to improve to the point where I could read words on a computer screen a lot easier.

          They found 18 brain mets and the normally do the gamma knife on 8-10 or fewer brain mets.  the neurosurgeon and radiation oncologist were talking to other centers around the countr, including I think the university of pennsylvania to see how many sites were treating a higher number of tumors.  Some were treating up to 30 so even though my case was on the higher end, he felt the gamma knife was a better approach to focus on the tumors rather than whole brain radiation that would work better on just eliminating smaller floating mets in the brain that were smaller in size.  He did not say how large my mets were, but when he showed me the MRI, some looked small, 2 or 3 mm, and others looked 5-6 times as large (which was kind of scary).

          So in conclusion, his symptoms could be caused by something else, but definitely fall within the criteria for brain mets.

          Make sure the scan they do gets enough slices of the brain so they can detect the very small mets.  I did not realize that there was such a wide range of brain mri slices the could do.

          I hated the one I had in May because the banging noise can be hard to take, but the varied the tone and none of them lasted very long.  The brain MRI I had yesterday was bad and noise and since it was taking so many fine slices, there was a constand LOUD banging noise for what seemed like 10 minutes or more.  I would suggest some type of anti anxiety pill or iv before the procedure.  They did mine once without contrast and then injected me with something and did the entire procedure again.  I did not know if I could make it through the second round, but kept thinking about the purpose of the scan and the importance of just making it through, but it was not easy.  i will need another mri next week before hte gamma knife and I will definitely get some type of adavin or other anti anziety medicine, even though that procedure would only last for 15-20 minutes instead of 1 extremely long hour.

          Good luck and see if they can get Eric on steriods in preparation for finding brain tumors..

          Bill

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          bill58
          Participant

            Jill, (sorry if this gets kind of long, but i am giving you what limited information I just gathered today),

            I'm no expert, but I was diagnosed with Brain mets this week Wednesday.

            I had a ct scan with brain ct scan this week in preparation for the Braf trial on Monday 11/1.

            My oncologist called me on Wednesday to inform that the ct scan showed brain mets.

            I told her I had been having vision problems for the past week and a half.  She said it could be due to the brain mets.

            I had difficulty reading computer screens and newspapers.  the words would all jumble together.

            I talked to the neurosurgeon and the did a full brain MRI yesterday that was geared towards a very fine scan to get 400-500 different slices of the brain instead of the one I had in May that only did 20-30 slices of the entire brain.

            They looked at the MRI and found tumors in the area that would affect my vision. I met with the neurosurgeon and radiation oncologist who handles gamma knife and he did a variety of neurological tests and vision tests. In my case, I was able to follow his finger with my eyes and was able to focus on his nose while he held out his hands to test my peripheral vision.  I was able to detect which hand he was moving with my peripheral vision.

            They tested various arm movements with my eyes closed to see if I pulled to one side.

            The bottom line is brain mets can manifest themselves in a variety of symptoms, depending on what part of the brain was being pressed by the tumor.  mine was apparently affecting my fin close up visual clarity.  Other people could have their peripheral vision affected, or any other portion of their vision. It could affect motor functions, balance, hearing, garbled speech. 

            The brochure they gave me for Metastatic brain tumors and steroctactic radiosurgery (please ignore any misspellings since my vision is still not 100% and I am doing the best I can),

            – headaches that are worse in the morning or while lying down

            – seizures, which may be focal (eg starting and freezing ) or include convulsions

            – weakness or numbness in the arms or legs, including stumbling (which sounds like part of Eric's problem).unusual vomiting, blurred or double vision, difficulty thinking or Memory loss.

            My oncologist talked to the radiologist on Wednesday and prescribed steriods to help reduce the swelling of the brain tumors to help my vision.  after 2 pills on Wednesday, 2 pills on Thursday and 1 this morning, my vision seemed to improve to the point where I could read words on a computer screen a lot easier.

            They found 18 brain mets and the normally do the gamma knife on 8-10 or fewer brain mets.  the neurosurgeon and radiation oncologist were talking to other centers around the countr, including I think the university of pennsylvania to see how many sites were treating a higher number of tumors.  Some were treating up to 30 so even though my case was on the higher end, he felt the gamma knife was a better approach to focus on the tumors rather than whole brain radiation that would work better on just eliminating smaller floating mets in the brain that were smaller in size.  He did not say how large my mets were, but when he showed me the MRI, some looked small, 2 or 3 mm, and others looked 5-6 times as large (which was kind of scary).

            So in conclusion, his symptoms could be caused by something else, but definitely fall within the criteria for brain mets.

            Make sure the scan they do gets enough slices of the brain so they can detect the very small mets.  I did not realize that there was such a wide range of brain mri slices the could do.

            I hated the one I had in May because the banging noise can be hard to take, but the varied the tone and none of them lasted very long.  The brain MRI I had yesterday was bad and noise and since it was taking so many fine slices, there was a constand LOUD banging noise for what seemed like 10 minutes or more.  I would suggest some type of anti anxiety pill or iv before the procedure.  They did mine once without contrast and then injected me with something and did the entire procedure again.  I did not know if I could make it through the second round, but kept thinking about the purpose of the scan and the importance of just making it through, but it was not easy.  i will need another mri next week before hte gamma knife and I will definitely get some type of adavin or other anti anziety medicine, even though that procedure would only last for 15-20 minutes instead of 1 extremely long hour.

            Good luck and see if they can get Eric on steriods in preparation for finding brain tumors..

            Bill

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            Lori CO
            Participant

              Hi Jill,

              When I had brain mets the first thing I noticed was that I was forgetful. I couldn't remember where things were in the kitchen or how to shut down my computer even though I use it every day. Over the next several days, I noticed disjointed thoughts with no focus and a disconnect between what I was thinking and writing. I also ran into walls, fell while walking and had a dull headache every morning. The symptoms can vary depending on tumor size and what part of the brain is involved. I've had 3 craniotomies, SRS and partial brain radiation and have not had a recurrence in the brain in 8 months. I would urge Eric to get a brain MRI sooner rather than later to put your mind at ease.

              Good luck,

              Lori

              Stage IV

              Grand Junction, CO

               

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                EricNJill
                Participant

                  Bill – sorry to hear about your new mets. 

                  Thank you both so much for responding to my post.  He was already scheduled for a Pituitary MRI on Tuesday because he's been vomiting for months and they can't figure out why so now they have changed the order to Brain MRI with attention to Pituitary Gland.  I had no idea they did so few slices on the Brain in some MRI's so thank you for that information.  I will speak with the Tech that morning before his MRI to make sure they do a detailed scan.

                  Bill, I really appreciate you taking the time to gather all that information for me.  I just wanted to be aware of some other symptoms that he could have and that was what I was looking for.   Eric has had problems with memory loss since IL-2.  His scans of the Brain have shown degeneration from the IL-2 and since then he's had behavioral changes and memory loss. 

                  They did an endoscope on Wednesday because of all the vomiting but didn't find any cause of it.  They did say that his stomach has trauma and the esophagus is thin from all the vomiting.

                  We are hoping they can figure out what is going on.  We are scheduled to see a doctor in Tennessee on November 9th to begin a BRAF trial.  I pray that there isn't something going on that will keep him from getting in the trial.

                  Thank you very much.  Jill N Eric In OH

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                  bill58
                  Participant

                    Jill N Eric,

                    Good luck.  This is such a sucky disease with the symptoms changing over time as the mets move around the body.

                    Let me know how the BRAF trial goes on November 9th.  I was scheduled to start BRAF on Nov 1, but the brain mets is an exclusion until they have been treated for something like 3 months.  I was the last one to get in through my oncologist and they cannot hold the spot open for that long and I don't want to wait 3 months to get my other mets treated.

                    I dont know if you were scheduled for the same trial that I was or if you will have the same outcome.  Good luck.

                    Bill

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                    bill58
                    Participant

                      Jill N Eric,

                      Good luck.  This is such a sucky disease with the symptoms changing over time as the mets move around the body.

                      Let me know how the BRAF trial goes on November 9th.  I was scheduled to start BRAF on Nov 1, but the brain mets is an exclusion until they have been treated for something like 3 months.  I was the last one to get in through my oncologist and they cannot hold the spot open for that long and I don't want to wait 3 months to get my other mets treated.

                      I dont know if you were scheduled for the same trial that I was or if you will have the same outcome.  Good luck.

                      Bill

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                      EricNJill
                      Participant

                        Bill – sorry to hear about your new mets. 

                        Thank you both so much for responding to my post.  He was already scheduled for a Pituitary MRI on Tuesday because he's been vomiting for months and they can't figure out why so now they have changed the order to Brain MRI with attention to Pituitary Gland.  I had no idea they did so few slices on the Brain in some MRI's so thank you for that information.  I will speak with the Tech that morning before his MRI to make sure they do a detailed scan.

                        Bill, I really appreciate you taking the time to gather all that information for me.  I just wanted to be aware of some other symptoms that he could have and that was what I was looking for.   Eric has had problems with memory loss since IL-2.  His scans of the Brain have shown degeneration from the IL-2 and since then he's had behavioral changes and memory loss. 

                        They did an endoscope on Wednesday because of all the vomiting but didn't find any cause of it.  They did say that his stomach has trauma and the esophagus is thin from all the vomiting.

                        We are hoping they can figure out what is going on.  We are scheduled to see a doctor in Tennessee on November 9th to begin a BRAF trial.  I pray that there isn't something going on that will keep him from getting in the trial.

                        Thank you very much.  Jill N Eric In OH

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                      Lori CO
                      Participant

                        Hi Jill,

                        When I had brain mets the first thing I noticed was that I was forgetful. I couldn't remember where things were in the kitchen or how to shut down my computer even though I use it every day. Over the next several days, I noticed disjointed thoughts with no focus and a disconnect between what I was thinking and writing. I also ran into walls, fell while walking and had a dull headache every morning. The symptoms can vary depending on tumor size and what part of the brain is involved. I've had 3 craniotomies, SRS and partial brain radiation and have not had a recurrence in the brain in 8 months. I would urge Eric to get a brain MRI sooner rather than later to put your mind at ease.

                        Good luck,

                        Lori

                        Stage IV

                        Grand Junction, CO

                         

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                        Carmon in NM
                        Participant

                          Hi Jill – I think in most cases the symptoms depend on where and how large the tumor is. The large one that bled into my brain in June was right temporal. I was having symptoms for months but didn't recognize what they were.

                          Bad headaches and mild nausea that did respond to tylenol but recurred every day (I blamed it on a sinus infection).

                          No short term memory at all and my higher comprehension took a major hit.

                          Difficulty focusing my eyes and my peripheral vision is down to less than 50% of what it used to be. Shape recognition – if something familiar wasn't where I expected it to be, it was like I had never seen it before. I actually lost all of the vision in my left eye for a period of time.

                          Behavioral changes – I have always been a 'project starter and finisher' sort of person but I became paralyzed sitting and looking at stacks of income tax papers and unable to take action for weeks. I also have been an avid blog writer for around six years and I was unable to write.

                          After the brain bleed, I also had trouble with hearing and word recognition.

                          Extreme fatigue.

                          None of these things separately were a big red flag but if I had told my onc all of them together she said she would have immediately gotten me in for a high level brain MRI and maybe saved me a big bleed that left some permanent trauma.

                          I hope so much that all goes well for you and your husband. I had Gamma Knife and the good news is three months after treatment the big tumor I have is reduced by 50%. Carmon

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                          Carmon in NM
                          Participant

                            Hi Jill – I think in most cases the symptoms depend on where and how large the tumor is. The large one that bled into my brain in June was right temporal. I was having symptoms for months but didn't recognize what they were.

                            Bad headaches and mild nausea that did respond to tylenol but recurred every day (I blamed it on a sinus infection).

                            No short term memory at all and my higher comprehension took a major hit.

                            Difficulty focusing my eyes and my peripheral vision is down to less than 50% of what it used to be. Shape recognition – if something familiar wasn't where I expected it to be, it was like I had never seen it before. I actually lost all of the vision in my left eye for a period of time.

                            Behavioral changes – I have always been a 'project starter and finisher' sort of person but I became paralyzed sitting and looking at stacks of income tax papers and unable to take action for weeks. I also have been an avid blog writer for around six years and I was unable to write.

                            After the brain bleed, I also had trouble with hearing and word recognition.

                            Extreme fatigue.

                            None of these things separately were a big red flag but if I had told my onc all of them together she said she would have immediately gotten me in for a high level brain MRI and maybe saved me a big bleed that left some permanent trauma.

                            I hope so much that all goes well for you and your husband. I had Gamma Knife and the good news is three months after treatment the big tumor I have is reduced by 50%. Carmon

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                            Amy Busby
                            Participant

                              My brain involvement is a bit different since it is leptomeningal (in the lining surrounding the brain) rather than solid tumors.  I think the location plays a big part in the symptoms.  In my case I had only brief, sporadic incidents of throbbing headaches in the back of my head accompanied by a whooshing sound.

                              As far as I know that's still my only symptom.  I had one brief seizure and have been an a Rx for that ever since (Keppra).

                              The intensity and freq. increased for awhile, but then lessened – corresponding to MRI results each time.

                              I am a bit unsteady and sometimes kinda stumble / stagger a bit.  Could be a symptom, could be a side effects from WBR, could be due to my leg met that keeps me off my feet most of the time.

                              I also have headaches and vomitting from increased spinal fluid pressure from my IL2 treatments.  Leptom. mets can also cause that kind of increased pressure.  Basically the side effects you'd have from a spinal headache after a spinal tap.

                              I hope it's not another new element for ya'll to fight.  I know it can wear you down.  But try to hang in there and stay strong!

                              Love,

                              Amy

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                              Amy Busby
                              Participant

                                My brain involvement is a bit different since it is leptomeningal (in the lining surrounding the brain) rather than solid tumors.  I think the location plays a big part in the symptoms.  In my case I had only brief, sporadic incidents of throbbing headaches in the back of my head accompanied by a whooshing sound.

                                As far as I know that's still my only symptom.  I had one brief seizure and have been an a Rx for that ever since (Keppra).

                                The intensity and freq. increased for awhile, but then lessened – corresponding to MRI results each time.

                                I am a bit unsteady and sometimes kinda stumble / stagger a bit.  Could be a symptom, could be a side effects from WBR, could be due to my leg met that keeps me off my feet most of the time.

                                I also have headaches and vomitting from increased spinal fluid pressure from my IL2 treatments.  Leptom. mets can also cause that kind of increased pressure.  Basically the side effects you'd have from a spinal headache after a spinal tap.

                                I hope it's not another new element for ya'll to fight.  I know it can wear you down.  But try to hang in there and stay strong!

                                Love,

                                Amy

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