The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Brain Met/Gamma Knife Problems, etc

Forums General Melanoma Community Brain Met/Gamma Knife Problems, etc

  • Post
    Lisa13
    Participant

      Exactly 2 months ago, I had my gamma knife. In the past 2 days, I've had a weird headache that doesn't last at all, but I know these type of things can be edema – especially since mine was 2.5cm.  I know it can also be scary thoughts as well, but I want to know what other people have experienced in terms of headache. I know sometimes they are so bad for some people, but I havn't had that yet – just a headache that hurts and then is gone. I have my brain scan next week and hope there isn't anymore.  

      Exactly 2 months ago, I had my gamma knife. In the past 2 days, I've had a weird headache that doesn't last at all, but I know these type of things can be edema – especially since mine was 2.5cm.  I know it can also be scary thoughts as well, but I want to know what other people have experienced in terms of headache. I know sometimes they are so bad for some people, but I havn't had that yet – just a headache that hurts and then is gone. I have my brain scan next week and hope there isn't anymore.  

      There is a woman on this board who had 3 brain mets 5 years ago and is still here kicking ass! There are also 2 other woman here who've had at least 2 and it's been 2 years +. I just have to cling on to this type of hope.

    Viewing 11 reply threads
    • Replies
        Lisa13
        Participant

          I also want to know where headaches can be located if it's edema. Is it around the area where the brain met is?  Mine is mainly behind my eyes (like a migraine). 

          Lisa13
          Participant

            I also want to know where headaches can be located if it's edema. Is it around the area where the brain met is?  Mine is mainly behind my eyes (like a migraine). 

              lhaley
              Participant

                Lisa,

                When I saw the brain scan with the edema it was amazing how it spreads.  The headache could be anywhere!  I started having double vision and then the eyes starting seeming to throw colors out there.   I am having a crainectomy in 2 weeks to finish off the tumor and to get the edema gone.   I would call, I know that your scan is next week but I'd get some advice.

                Edema is normal but I know the amount I ended up with was way more then expected. I could wait it out but it could take months and have to be on the Dex continuously.

                The edema does not need to be right near the tumor from at least my example.  It's everywhere!!!

                Linda

                lhaley
                Participant

                  Lisa,

                  When I saw the brain scan with the edema it was amazing how it spreads.  The headache could be anywhere!  I started having double vision and then the eyes starting seeming to throw colors out there.   I am having a crainectomy in 2 weeks to finish off the tumor and to get the edema gone.   I would call, I know that your scan is next week but I'd get some advice.

                  Edema is normal but I know the amount I ended up with was way more then expected. I could wait it out but it could take months and have to be on the Dex continuously.

                  The edema does not need to be right near the tumor from at least my example.  It's everywhere!!!

                  Linda

                  lhaley
                  Participant

                    Lisa,

                    When I saw the brain scan with the edema it was amazing how it spreads.  The headache could be anywhere!  I started having double vision and then the eyes starting seeming to throw colors out there.   I am having a crainectomy in 2 weeks to finish off the tumor and to get the edema gone.   I would call, I know that your scan is next week but I'd get some advice.

                    Edema is normal but I know the amount I ended up with was way more then expected. I could wait it out but it could take months and have to be on the Dex continuously.

                    The edema does not need to be right near the tumor from at least my example.  It's everywhere!!!

                    Linda

                  Lisa13
                  Participant

                    I also want to know where headaches can be located if it's edema. Is it around the area where the brain met is?  Mine is mainly behind my eyes (like a migraine). 

                    fdess056
                    Participant

                      Hi, Lisa.  I think you said previously that you were getting some of the side effects from IPI fairly recently.  After my initial dose I ( I just received my 2nd yesterday) I had some headaches that seem similar to what you;re describing.  I didn't need to take anything for them, they just came and went.   Could yours be another side effect of your IPI treatments?  Best of luck with the upcoming scan.  Keep up the hope and your great attitude

                      FrankD  Brooklyn 

                      fdess056
                      Participant

                        Hi, Lisa.  I think you said previously that you were getting some of the side effects from IPI fairly recently.  After my initial dose I ( I just received my 2nd yesterday) I had some headaches that seem similar to what you;re describing.  I didn't need to take anything for them, they just came and went.   Could yours be another side effect of your IPI treatments?  Best of luck with the upcoming scan.  Keep up the hope and your great attitude

                        FrankD  Brooklyn 

                        fdess056
                        Participant

                          Hi, Lisa.  I think you said previously that you were getting some of the side effects from IPI fairly recently.  After my initial dose I ( I just received my 2nd yesterday) I had some headaches that seem similar to what you;re describing.  I didn't need to take anything for them, they just came and went.   Could yours be another side effect of your IPI treatments?  Best of luck with the upcoming scan.  Keep up the hope and your great attitude

                          FrankD  Brooklyn 

                          davidfromsingapore
                          Participant

                            Hi Lisa

                             

                            I had 3 brain mets – a crainiotomy about 1 month ago – followed by Novalis (same as gamma knife) and now I'm on Zelboaraf.  First scan showed I was clean.  After my Novlais treatment, I had to readmit myself to the hospital 3 times for headaches.  Apparently, the radiated tumor was bleeding and there was swelling on my brain lining.  Docs were not sure if it was new disease or simply the brain scars and healing taking place.  The headaches slowly went away, but occassionally I still get a small one that works it's way through.  It is usually treatable with Tylenlon or morphine syrup.  As long as they don't get out of control, because when they were bad, I was in misery.  My recommendation to you is to take the headaches very seriously and if they get to the point where you cannot function, that you get yourself into the hospital.  But know also that surgery and radiation are major trauma to your brain, and it is going to take time for it heal completely.  You'll need to be patient.  All the best to you.  

                            Sincerely, David

                            davidfromsingapore
                            Participant

                              Hi Lisa

                               

                              I had 3 brain mets – a crainiotomy about 1 month ago – followed by Novalis (same as gamma knife) and now I'm on Zelboaraf.  First scan showed I was clean.  After my Novlais treatment, I had to readmit myself to the hospital 3 times for headaches.  Apparently, the radiated tumor was bleeding and there was swelling on my brain lining.  Docs were not sure if it was new disease or simply the brain scars and healing taking place.  The headaches slowly went away, but occassionally I still get a small one that works it's way through.  It is usually treatable with Tylenlon or morphine syrup.  As long as they don't get out of control, because when they were bad, I was in misery.  My recommendation to you is to take the headaches very seriously and if they get to the point where you cannot function, that you get yourself into the hospital.  But know also that surgery and radiation are major trauma to your brain, and it is going to take time for it heal completely.  You'll need to be patient.  All the best to you.  

                              Sincerely, David

                              davidfromsingapore
                              Participant

                                Hi Lisa

                                 

                                I had 3 brain mets – a crainiotomy about 1 month ago – followed by Novalis (same as gamma knife) and now I'm on Zelboaraf.  First scan showed I was clean.  After my Novlais treatment, I had to readmit myself to the hospital 3 times for headaches.  Apparently, the radiated tumor was bleeding and there was swelling on my brain lining.  Docs were not sure if it was new disease or simply the brain scars and healing taking place.  The headaches slowly went away, but occassionally I still get a small one that works it's way through.  It is usually treatable with Tylenlon or morphine syrup.  As long as they don't get out of control, because when they were bad, I was in misery.  My recommendation to you is to take the headaches very seriously and if they get to the point where you cannot function, that you get yourself into the hospital.  But know also that surgery and radiation are major trauma to your brain, and it is going to take time for it heal completely.  You'll need to be patient.  All the best to you.  

                                Sincerely, David

                                  Lisa13
                                  Participant

                                    Thanks everyone,

                                    I don't know what to make out of these headaches. I've had one for 2 days – always mid afternoon or in the evening. It's a sore back of the neck and then a headache between my two eyes. They linger on a bit and are painful, but definately relieved by advil or tylenol. I don't know if this is a new brain met or the effects of gamma knife.  It seems strange to have a headache these past 2-3 dayss when I'm not a person who gets headache. 

                                    Lisa13
                                    Participant

                                      Thanks everyone,

                                      I don't know what to make out of these headaches. I've had one for 2 days – always mid afternoon or in the evening. It's a sore back of the neck and then a headache between my two eyes. They linger on a bit and are painful, but definately relieved by advil or tylenol. I don't know if this is a new brain met or the effects of gamma knife.  It seems strange to have a headache these past 2-3 dayss when I'm not a person who gets headache. 

                                      lhaley
                                      Participant

                                        My list of no medications is Advil!   I just hate it when I don't feel well on the weekend.  Then contacting the Dr seems to make any issue a bit larger. 

                                        If something can be relieved by an over the counter medication this might just be stress.  Try not to let yourself go negative. Remember this is the perfect time for some edema to be developing.  Not that it's a good thing but I've been told by my Dr that it is showing my immune system is still working (and that's been all of this steroids!) 

                                        Linda

                                        lhaley
                                        Participant

                                          My list of no medications is Advil!   I just hate it when I don't feel well on the weekend.  Then contacting the Dr seems to make any issue a bit larger. 

                                          If something can be relieved by an over the counter medication this might just be stress.  Try not to let yourself go negative. Remember this is the perfect time for some edema to be developing.  Not that it's a good thing but I've been told by my Dr that it is showing my immune system is still working (and that's been all of this steroids!) 

                                          Linda

                                          lhaley
                                          Participant

                                            My list of no medications is Advil!   I just hate it when I don't feel well on the weekend.  Then contacting the Dr seems to make any issue a bit larger. 

                                            If something can be relieved by an over the counter medication this might just be stress.  Try not to let yourself go negative. Remember this is the perfect time for some edema to be developing.  Not that it's a good thing but I've been told by my Dr that it is showing my immune system is still working (and that's been all of this steroids!) 

                                            Linda

                                            FormerCaregiver
                                            Participant

                                              Lisa, you have received some great feedback so far. However, I wonder what is the most
                                              likely cause of the headaches in your case? Here are a couple of ideas:

                                              1.Acute sinusitis. This can cause pain around the forehead and eyes, with few other
                                              obvious symptoms.

                                              2. Yervoy side effects:
                                              From: http://www.yervoy.com/patient/side-effects/information.aspx
                                              "Inflammation of hormone glands (especially the pituitary, adrenal, and thyroid glands)
                                              that may affect how these glands work. Signs and symptoms that your glands are not
                                              working properly may include: persistent or unusual headaches …

                                              "Inflammation of the eyes. Symptoms may include: blurry vision, double vision, or other
                                              vision problems, eye pain or redness."

                                              Hope you are feeling better soon.

                                              Take care

                                              Frank from Australia

                                              FormerCaregiver
                                              Participant

                                                Lisa, you have received some great feedback so far. However, I wonder what is the most
                                                likely cause of the headaches in your case? Here are a couple of ideas:

                                                1.Acute sinusitis. This can cause pain around the forehead and eyes, with few other
                                                obvious symptoms.

                                                2. Yervoy side effects:
                                                From: http://www.yervoy.com/patient/side-effects/information.aspx
                                                "Inflammation of hormone glands (especially the pituitary, adrenal, and thyroid glands)
                                                that may affect how these glands work. Signs and symptoms that your glands are not
                                                working properly may include: persistent or unusual headaches …

                                                "Inflammation of the eyes. Symptoms may include: blurry vision, double vision, or other
                                                vision problems, eye pain or redness."

                                                Hope you are feeling better soon.

                                                Take care

                                                Frank from Australia

                                                Lisa13
                                                Participant

                                                  Thanks everyone! Your comments and suggestions have been wonderful and I greatly appreciated.

                                                  This could be anything, but I think I'll email the radiologist as he always answers me right away.  You start hoping it's symptoms of ipi – especially since I just got mild colitis.  However, when you've had 2 brain mets gamma knifed, you are more worried about the headaches being new a new one, but it's quite common to be edema.

                                                  I'm thankful that Advil works at this point and will find out how everything is doing next week.

                                                  Other than the headache from time to time, I feel great!

                                                  Lisa

                                                  Lisa13
                                                  Participant

                                                    Thanks everyone! Your comments and suggestions have been wonderful and I greatly appreciated.

                                                    This could be anything, but I think I'll email the radiologist as he always answers me right away.  You start hoping it's symptoms of ipi – especially since I just got mild colitis.  However, when you've had 2 brain mets gamma knifed, you are more worried about the headaches being new a new one, but it's quite common to be edema.

                                                    I'm thankful that Advil works at this point and will find out how everything is doing next week.

                                                    Other than the headache from time to time, I feel great!

                                                    Lisa

                                                    Lisa13
                                                    Participant

                                                      Thanks everyone! Your comments and suggestions have been wonderful and I greatly appreciated.

                                                      This could be anything, but I think I'll email the radiologist as he always answers me right away.  You start hoping it's symptoms of ipi – especially since I just got mild colitis.  However, when you've had 2 brain mets gamma knifed, you are more worried about the headaches being new a new one, but it's quite common to be edema.

                                                      I'm thankful that Advil works at this point and will find out how everything is doing next week.

                                                      Other than the headache from time to time, I feel great!

                                                      Lisa

                                                      FormerCaregiver
                                                      Participant

                                                        Lisa, you have received some great feedback so far. However, I wonder what is the most
                                                        likely cause of the headaches in your case? Here are a couple of ideas:

                                                        1.Acute sinusitis. This can cause pain around the forehead and eyes, with few other
                                                        obvious symptoms.

                                                        2. Yervoy side effects:
                                                        From: http://www.yervoy.com/patient/side-effects/information.aspx
                                                        "Inflammation of hormone glands (especially the pituitary, adrenal, and thyroid glands)
                                                        that may affect how these glands work. Signs and symptoms that your glands are not
                                                        working properly may include: persistent or unusual headaches …

                                                        "Inflammation of the eyes. Symptoms may include: blurry vision, double vision, or other
                                                        vision problems, eye pain or redness."

                                                        Hope you are feeling better soon.

                                                        Take care

                                                        Frank from Australia

                                                        Lisa13
                                                        Participant

                                                          Thanks everyone,

                                                          I don't know what to make out of these headaches. I've had one for 2 days – always mid afternoon or in the evening. It's a sore back of the neck and then a headache between my two eyes. They linger on a bit and are painful, but definately relieved by advil or tylenol. I don't know if this is a new brain met or the effects of gamma knife.  It seems strange to have a headache these past 2-3 dayss when I'm not a person who gets headache. 

                                                        LuckyMan51
                                                        Participant

                                                          Hi,

                                                          When are you next scheduled for a brain MRI? I had SRS last June and although my November MRI showed the Mel tumor on the brain dura was successfully zapped they could see signs of continued swelling/edema even then. I too have had since early Dec a start up in dull headaches that come and go but strong enough to wake me from a nights sleep? My Radation Oncologist has prescribed a steroid to reduce the swelling and although the headaches still come and go they are less frequent and less painful. Bear in mind that steroids have their own issues like inability to sleep, irritability, etc. I am scheduled for a MRI brain scan on Jan 27th to relook and see it something has developed since the Nov scan or is this just continued or developing edema/swelling from the SRS. From searching on this site and others it seems like the edema swelling complication isn't uncommon even as far out as 12-15 months after SRS. I think you will have a more definitive diagnosis of this being edema or not when you get your next scan. Monitor your vision, balance, nausea, etc and report to your Onc if you continue to be out of sorts. My Onc jumped on it and threw me on steroids quickly. I delayed the start and put off the MRI by a week as my wife was traveling outside the country and I was Mr Mom at home for a few weeks solo. Fingers crossed and trying to stay calm. -Good luck. 

                                                            rick1981
                                                            Participant

                                                              Can't really help you but wish you good luck!!

                                                              Wanted to let you know that although Dex helps with the edema it can works against the immunotherapy so best to discuss with your onc and RT!

                                                              rick1981
                                                              Participant

                                                                Can't really help you but wish you good luck!!

                                                                Wanted to let you know that although Dex helps with the edema it can works against the immunotherapy so best to discuss with your onc and RT!

                                                                rick1981
                                                                Participant

                                                                  Can't really help you but wish you good luck!!

                                                                  Wanted to let you know that although Dex helps with the edema it can works against the immunotherapy so best to discuss with your onc and RT!

                                                                LuckyMan51
                                                                Participant

                                                                  Hi,

                                                                  When are you next scheduled for a brain MRI? I had SRS last June and although my November MRI showed the Mel tumor on the brain dura was successfully zapped they could see signs of continued swelling/edema even then. I too have had since early Dec a start up in dull headaches that come and go but strong enough to wake me from a nights sleep? My Radation Oncologist has prescribed a steroid to reduce the swelling and although the headaches still come and go they are less frequent and less painful. Bear in mind that steroids have their own issues like inability to sleep, irritability, etc. I am scheduled for a MRI brain scan on Jan 27th to relook and see it something has developed since the Nov scan or is this just continued or developing edema/swelling from the SRS. From searching on this site and others it seems like the edema swelling complication isn't uncommon even as far out as 12-15 months after SRS. I think you will have a more definitive diagnosis of this being edema or not when you get your next scan. Monitor your vision, balance, nausea, etc and report to your Onc if you continue to be out of sorts. My Onc jumped on it and threw me on steroids quickly. I delayed the start and put off the MRI by a week as my wife was traveling outside the country and I was Mr Mom at home for a few weeks solo. Fingers crossed and trying to stay calm. -Good luck. 

                                                                  LuckyMan51
                                                                  Participant

                                                                    Hi,

                                                                    When are you next scheduled for a brain MRI? I had SRS last June and although my November MRI showed the Mel tumor on the brain dura was successfully zapped they could see signs of continued swelling/edema even then. I too have had since early Dec a start up in dull headaches that come and go but strong enough to wake me from a nights sleep? My Radation Oncologist has prescribed a steroid to reduce the swelling and although the headaches still come and go they are less frequent and less painful. Bear in mind that steroids have their own issues like inability to sleep, irritability, etc. I am scheduled for a MRI brain scan on Jan 27th to relook and see it something has developed since the Nov scan or is this just continued or developing edema/swelling from the SRS. From searching on this site and others it seems like the edema swelling complication isn't uncommon even as far out as 12-15 months after SRS. I think you will have a more definitive diagnosis of this being edema or not when you get your next scan. Monitor your vision, balance, nausea, etc and report to your Onc if you continue to be out of sorts. My Onc jumped on it and threw me on steroids quickly. I delayed the start and put off the MRI by a week as my wife was traveling outside the country and I was Mr Mom at home for a few weeks solo. Fingers crossed and trying to stay calm. -Good luck. 

                                                                Viewing 11 reply threads
                                                                • You must be logged in to reply to this topic.
                                                                About the MRF Patient Forum

                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                Popular Topics