numerous craniotomies, brain mets
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numerous craniotomies, brain mets

› Forums › General Melanoma Community › numerous craniotomies, brain mets

  • Post
    • May 18, 2012 at 4:33 pm
    kammariel
    Participant

      Although I've read a ton on this board, this is my first post. I've been trying to find a profile I read awhile back of brain met survivor with a super positive attitude. She had an astounding number of craniotomies and a picture of the staples on the back of her head. Do any of you know her name?

      My husband is currently in the hospital recovering from his 4th craniotomy procedure to the same site to relieve radiation necrosis and hemorraging. He  currently has 4 tumor sites. We're hopeful that the WBR he just completed will shrink them.

      Although I've read a ton on this board, this is my first post. I've been trying to find a profile I read awhile back of brain met survivor with a super positive attitude. She had an astounding number of craniotomies and a picture of the staples on the back of her head. Do any of you know her name?

      My husband is currently in the hospital recovering from his 4th craniotomy procedure to the same site to relieve radiation necrosis and hemorraging. He  currently has 4 tumor sites. We're hopeful that the WBR he just completed will shrink them.

      The rest of his body was clear from his last scans in Jan, but he's due for more scans. I'm just looking for positive stories right now. I have found many which have given me hope. This board has also made me confident that we are getting the best treatment at JWCI. He's already done Yervoy and steriotactic radiaiton. Thank you to all of you survivors and care takers who are sharing your stories.

      Kam

    Viewing 5 reply threads
    • Replies
        • May 18, 2012 at 5:21 pm
        killmel
        Participant

          Her name was nicole. I am sorry to tell you that she passed. She was a wonderful person.

          http://www.melanoma.org/community/mpip-melanoma-patients-information-page/tribute-nicoz

          • May 18, 2012 at 5:21 pm
          killmel
          Participant

            Her name was nicole. I am sorry to tell you that she passed. She was a wonderful person.

            http://www.melanoma.org/community/mpip-melanoma-patients-information-page/tribute-nicoz

              • May 18, 2012 at 5:43 pm
              kammariel
              Participant

                Thank you so much for your prompt reply. I re-read her story, and maybe super positive wasn't the most accurate description, but I still loved her attitude and am inspired by what she endured. Looks like she survived a few years after her first crani, which is actually comforting to me right now. It's so hard not to dwell in the dark side when you watch your loved one go through this.

                • May 18, 2012 at 5:43 pm
                kammariel
                Participant

                  Thank you so much for your prompt reply. I re-read her story, and maybe super positive wasn't the most accurate description, but I still loved her attitude and am inspired by what she endured. Looks like she survived a few years after her first crani, which is actually comforting to me right now. It's so hard not to dwell in the dark side when you watch your loved one go through this.

                  • May 18, 2012 at 5:43 pm
                  kammariel
                  Participant

                    Thank you so much for your prompt reply. I re-read her story, and maybe super positive wasn't the most accurate description, but I still loved her attitude and am inspired by what she endured. Looks like she survived a few years after her first crani, which is actually comforting to me right now. It's so hard not to dwell in the dark side when you watch your loved one go through this.

                  • May 18, 2012 at 5:21 pm
                  killmel
                  Participant

                    Her name was nicole. I am sorry to tell you that she passed. She was a wonderful person.

                    http://www.melanoma.org/community/mpip-melanoma-patients-information-page/tribute-nicoz

                    • May 18, 2012 at 8:37 pm
                    lhaley
                    Participant

                      Kam,

                      Nic was such a wonder for all of us.  You might just want to go back and read her posts to help you get positive thoughts.  You also might want to do a search for Jag.  John had a few crainectomies and he hasn't been on the board the last few weeks because his wife just had a baby. He is doing great and is living life.

                      I have had SRS on a 2.5cm brain met (Oct 4th) and because of edema I had a crainectomy 4 months later.  Right now they are watching to see if I have a recurrance, scar tissue or necrosis from the radiation. This was seen on the last MRI and the next MRI is in less then 2 weeks.   How did your husband discover the necrosis?  Was it from an MRI or how he was feeling. 

                      My mel oncologist has told me that there is a trial for brain mets with B-raf.  Has your husband been tested?  If he has tested positive I would think he wouldn't have to be in the trial since the drug itself is FDA approved. 

                      Sending positive vibes,

                      Linda

                      • May 18, 2012 at 8:37 pm
                      lhaley
                      Participant

                        Kam,

                        Nic was such a wonder for all of us.  You might just want to go back and read her posts to help you get positive thoughts.  You also might want to do a search for Jag.  John had a few crainectomies and he hasn't been on the board the last few weeks because his wife just had a baby. He is doing great and is living life.

                        I have had SRS on a 2.5cm brain met (Oct 4th) and because of edema I had a crainectomy 4 months later.  Right now they are watching to see if I have a recurrance, scar tissue or necrosis from the radiation. This was seen on the last MRI and the next MRI is in less then 2 weeks.   How did your husband discover the necrosis?  Was it from an MRI or how he was feeling. 

                        My mel oncologist has told me that there is a trial for brain mets with B-raf.  Has your husband been tested?  If he has tested positive I would think he wouldn't have to be in the trial since the drug itself is FDA approved. 

                        Sending positive vibes,

                        Linda

                          • May 19, 2012 at 1:20 am
                          kammariel
                          Participant

                            Thanks, I will read their posts. My husband, John, is not B-raf positive. He was due for a scan after his WBR, and that's when they found the necrosis and edema, but he was also symptomatic – memory loss, fatique, loss of appetite, unclear speech, flat affect and some confusion. This is the 4th time with these symptoms, so I'm getting pretty good at predicting when it's time to see the neurosurgeon. I try so hard to stay positive and not jump to conclusions when he's not feeling well. There are always other things to blame the symptoms on like radiaiton or Yervoy.

                            HOw long has it been since your crani? Are you B-raf positive?

                            Positive vibes right back at you,

                            Kam

                            • May 19, 2012 at 1:20 am
                            kammariel
                            Participant

                              Thanks, I will read their posts. My husband, John, is not B-raf positive. He was due for a scan after his WBR, and that's when they found the necrosis and edema, but he was also symptomatic – memory loss, fatique, loss of appetite, unclear speech, flat affect and some confusion. This is the 4th time with these symptoms, so I'm getting pretty good at predicting when it's time to see the neurosurgeon. I try so hard to stay positive and not jump to conclusions when he's not feeling well. There are always other things to blame the symptoms on like radiaiton or Yervoy.

                              HOw long has it been since your crani? Are you B-raf positive?

                              Positive vibes right back at you,

                              Kam

                              • May 19, 2012 at 1:20 am
                              kammariel
                              Participant

                                Thanks, I will read their posts. My husband, John, is not B-raf positive. He was due for a scan after his WBR, and that's when they found the necrosis and edema, but he was also symptomatic – memory loss, fatique, loss of appetite, unclear speech, flat affect and some confusion. This is the 4th time with these symptoms, so I'm getting pretty good at predicting when it's time to see the neurosurgeon. I try so hard to stay positive and not jump to conclusions when he's not feeling well. There are always other things to blame the symptoms on like radiaiton or Yervoy.

                                HOw long has it been since your crani? Are you B-raf positive?

                                Positive vibes right back at you,

                                Kam

                                • May 19, 2012 at 2:46 am
                                lhaley
                                Participant

                                  I had SRS middle of October and Jan 4th was seeing doubles …… severe edema.  Feb 4th had crainectomy.  Last mri saw a ring of white around where the tumor was taken.  First thought was scar but then can see a part that is thicker, I'll know in less than 2 weeks.

                                    I developed Cushings from being on the Dex for 5 months so it's hard to determine some of my side effects. I still have shaking and sometimes it's worse.  My neck hurts the worse but they think it was the positioning of the surgery and now with all of the inflamation.   I do often loose my appetite and associated it with the nerves that shoot through my back and wasn't thinking from the brain issues.   My speech is not as good as it was but because of the location and being deep in the brain I was originally my speech could have been much more affected than it was. I'm actually doing better now than a month ago. I do admit I'm worried about this!

                                  I was having strange pains in my head so they kept me on the Dex ….  now I realize that it was from an accident a few years ago and the sensitivity had come back.  I had dropped a paper shredder on my head when getting down from the top of a closet. 

                                  I am B-raf positive but right now really don't want to take it because I have so much inflamation already with my joints.  I also really lost a lot of my muscle mass from the steroids.  I'm doing much better but still have away to go.  I do have an appointment on Tuesday to start with accupuncture. One time I did accupuncture for months after a massive surgery and it made such a difference! The other time was for the cyatic nerve and after 2 times the pains were gone.  It's just soooo expensive. 

                                  Linda

                                  • May 19, 2012 at 2:46 am
                                  lhaley
                                  Participant

                                    I had SRS middle of October and Jan 4th was seeing doubles …… severe edema.  Feb 4th had crainectomy.  Last mri saw a ring of white around where the tumor was taken.  First thought was scar but then can see a part that is thicker, I'll know in less than 2 weeks.

                                      I developed Cushings from being on the Dex for 5 months so it's hard to determine some of my side effects. I still have shaking and sometimes it's worse.  My neck hurts the worse but they think it was the positioning of the surgery and now with all of the inflamation.   I do often loose my appetite and associated it with the nerves that shoot through my back and wasn't thinking from the brain issues.   My speech is not as good as it was but because of the location and being deep in the brain I was originally my speech could have been much more affected than it was. I'm actually doing better now than a month ago. I do admit I'm worried about this!

                                    I was having strange pains in my head so they kept me on the Dex ….  now I realize that it was from an accident a few years ago and the sensitivity had come back.  I had dropped a paper shredder on my head when getting down from the top of a closet. 

                                    I am B-raf positive but right now really don't want to take it because I have so much inflamation already with my joints.  I also really lost a lot of my muscle mass from the steroids.  I'm doing much better but still have away to go.  I do have an appointment on Tuesday to start with accupuncture. One time I did accupuncture for months after a massive surgery and it made such a difference! The other time was for the cyatic nerve and after 2 times the pains were gone.  It's just soooo expensive. 

                                    Linda

                                    • May 19, 2012 at 2:46 am
                                    lhaley
                                    Participant

                                      I had SRS middle of October and Jan 4th was seeing doubles …… severe edema.  Feb 4th had crainectomy.  Last mri saw a ring of white around where the tumor was taken.  First thought was scar but then can see a part that is thicker, I'll know in less than 2 weeks.

                                        I developed Cushings from being on the Dex for 5 months so it's hard to determine some of my side effects. I still have shaking and sometimes it's worse.  My neck hurts the worse but they think it was the positioning of the surgery and now with all of the inflamation.   I do often loose my appetite and associated it with the nerves that shoot through my back and wasn't thinking from the brain issues.   My speech is not as good as it was but because of the location and being deep in the brain I was originally my speech could have been much more affected than it was. I'm actually doing better now than a month ago. I do admit I'm worried about this!

                                      I was having strange pains in my head so they kept me on the Dex ….  now I realize that it was from an accident a few years ago and the sensitivity had come back.  I had dropped a paper shredder on my head when getting down from the top of a closet. 

                                      I am B-raf positive but right now really don't want to take it because I have so much inflamation already with my joints.  I also really lost a lot of my muscle mass from the steroids.  I'm doing much better but still have away to go.  I do have an appointment on Tuesday to start with accupuncture. One time I did accupuncture for months after a massive surgery and it made such a difference! The other time was for the cyatic nerve and after 2 times the pains were gone.  It's just soooo expensive. 

                                      Linda

                                      • May 20, 2012 at 3:21 am
                                      kammariel
                                      Participant

                                        I hope you can find some relief from the pain and can afford to treat yourself to acupuncture. I also hope that you get a nice long break from health issues! John and I are home from the hospital and John feels good. So thankful to have my husband back to his old self. I'm hoping we get a break from hospitals too! Take care!

                                        Kam

                                        • May 20, 2012 at 3:21 am
                                        kammariel
                                        Participant

                                          I hope you can find some relief from the pain and can afford to treat yourself to acupuncture. I also hope that you get a nice long break from health issues! John and I are home from the hospital and John feels good. So thankful to have my husband back to his old self. I'm hoping we get a break from hospitals too! Take care!

                                          Kam

                                          • May 20, 2012 at 3:21 am
                                          kammariel
                                          Participant

                                            I hope you can find some relief from the pain and can afford to treat yourself to acupuncture. I also hope that you get a nice long break from health issues! John and I are home from the hospital and John feels good. So thankful to have my husband back to his old self. I'm hoping we get a break from hospitals too! Take care!

                                            Kam

                                          • May 18, 2012 at 8:37 pm
                                          lhaley
                                          Participant

                                            Kam,

                                            Nic was such a wonder for all of us.  You might just want to go back and read her posts to help you get positive thoughts.  You also might want to do a search for Jag.  John had a few crainectomies and he hasn't been on the board the last few weeks because his wife just had a baby. He is doing great and is living life.

                                            I have had SRS on a 2.5cm brain met (Oct 4th) and because of edema I had a crainectomy 4 months later.  Right now they are watching to see if I have a recurrance, scar tissue or necrosis from the radiation. This was seen on the last MRI and the next MRI is in less then 2 weeks.   How did your husband discover the necrosis?  Was it from an MRI or how he was feeling. 

                                            My mel oncologist has told me that there is a trial for brain mets with B-raf.  Has your husband been tested?  If he has tested positive I would think he wouldn't have to be in the trial since the drug itself is FDA approved. 

                                            Sending positive vibes,

                                            Linda

                                        Viewing 5 reply threads
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