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Treatment Advice – Brain Mets
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Treatment Advice – Brain Mets

› Forums › General Melanoma Community › Treatment Advice – Brain Mets

  • Post
    • June 7, 2012 at 6:39 pm
    rrrule32
    Participant

      Hello All,

      My fiance, Kaitlyn, is 23 years old and has Stage 4 melanoma.  It has moved to her brain.  She starts radiation tomorrow.  They are doing a type of focused radiation, I don't think it's SRS or Gamma Knife or Cyber Knife, but they have this new machine that, as it's giving her whole brain radiation, when it gets to her brain mets, it will stop and dosage will increase.

      Hello All,

      My fiance, Kaitlyn, is 23 years old and has Stage 4 melanoma.  It has moved to her brain.  She starts radiation tomorrow.  They are doing a type of focused radiation, I don't think it's SRS or Gamma Knife or Cyber Knife, but they have this new machine that, as it's giving her whole brain radiation, when it gets to her brain mets, it will stop and dosage will increase.

      I'm wondering, people in Kaitlyn's situation, do you have any advice for treatments?  Anything that worked for you?  I'm trying to get our oncologist to give her her last dose of Yervoy.  She had her first 3 doses, and they started working on her body.  Have any of you ever heard of Mannitol?  It's a natural compound that opens up the arteries to the brain and also shrinks the endothelial cells that block foreign agents to the brain.  I'm thinking if Kait were to take Mannitol before receiving any kind of treatment, it would be able to reach the brain.  Anyone else heard of this?  Her oncologist right now doesn't want to give her her last dose of Yervoy because he thinks it could counteract with the radiation.

      Anyone ever heard of Hemp Oil from the famous Rick Simpson?  Not hemp seed oil, but hemp oil.

      Any advice?  It would be appreciated.

      Thank you,

      Travis

    Viewing 11 reply threads
    • Replies
        • June 7, 2012 at 8:18 pm
        lhaley
        Participant

          I'm so sorry, especially with Kaitlyn being so young.  My question is how many mets and size.  I had SRS in Oct and in Feb they did a crainectomy because of edema.  I had 1 tumor and it was very deep and 2.6 cm.  It is now gone but I have another that is now 3mm.  I am having SRS again next week.   

          I would really question about Whole brain because it's on a new machine.  Usually whole brain if there are more than 4 or 5 and some places do many more.  I was offered a trail with the b-raf for brain mets but I decided to do the steriotactic radiation instead. 

          If Kaitlyn is on steroids then they will delay Yervoy.  Please give more of Kaitlyn's particulars and then maybe we can give you more of our experiences. 

          Linda

          • June 7, 2012 at 8:18 pm
          lhaley
          Participant

            I'm so sorry, especially with Kaitlyn being so young.  My question is how many mets and size.  I had SRS in Oct and in Feb they did a crainectomy because of edema.  I had 1 tumor and it was very deep and 2.6 cm.  It is now gone but I have another that is now 3mm.  I am having SRS again next week.   

            I would really question about Whole brain because it's on a new machine.  Usually whole brain if there are more than 4 or 5 and some places do many more.  I was offered a trail with the b-raf for brain mets but I decided to do the steriotactic radiation instead. 

            If Kaitlyn is on steroids then they will delay Yervoy.  Please give more of Kaitlyn's particulars and then maybe we can give you more of our experiences. 

            Linda

            • June 7, 2012 at 8:18 pm
            lhaley
            Participant

              I'm so sorry, especially with Kaitlyn being so young.  My question is how many mets and size.  I had SRS in Oct and in Feb they did a crainectomy because of edema.  I had 1 tumor and it was very deep and 2.6 cm.  It is now gone but I have another that is now 3mm.  I am having SRS again next week.   

              I would really question about Whole brain because it's on a new machine.  Usually whole brain if there are more than 4 or 5 and some places do many more.  I was offered a trail with the b-raf for brain mets but I decided to do the steriotactic radiation instead. 

              If Kaitlyn is on steroids then they will delay Yervoy.  Please give more of Kaitlyn's particulars and then maybe we can give you more of our experiences. 

              Linda

              • June 7, 2012 at 9:31 pm
              zaccarin
              Participant

                I am wondering why Kaitlyn's doctor feels that radiation will not work well with yervoy. Please read this article, entitled "Radiation Blast May turbo-charge yervo,." which suggests the opposite.

                http://www.bloomberg.com/news/2012-03-07/radiation-blast-may-turbocharge-bristol-myers-melanoma-drug-report-shows.html

                • June 7, 2012 at 9:31 pm
                zaccarin
                Participant

                  I am wondering why Kaitlyn's doctor feels that radiation will not work well with yervoy. Please read this article, entitled "Radiation Blast May turbo-charge yervo,." which suggests the opposite.

                  http://www.bloomberg.com/news/2012-03-07/radiation-blast-may-turbocharge-bristol-myers-melanoma-drug-report-shows.html

                  • June 7, 2012 at 9:31 pm
                  zaccarin
                  Participant

                    I am wondering why Kaitlyn's doctor feels that radiation will not work well with yervoy. Please read this article, entitled "Radiation Blast May turbo-charge yervo,." which suggests the opposite.

                    http://www.bloomberg.com/news/2012-03-07/radiation-blast-may-turbocharge-bristol-myers-melanoma-drug-report-shows.html

                    • June 7, 2012 at 10:59 pm
                    teri0915
                    Participant
                      Im curious about the size and amount of mets also. Can they do a crainiotomy? I was 24 when it hit my brain and did the surgery and gamma knife. Im wondering why they want to do whole brain radiation. Theu had told me that the whole brain want a great idea because of my age. How long has it been since she was staged at 4?
                      I hope all the best for you two.
                      Teri
                      • June 7, 2012 at 10:59 pm
                      teri0915
                      Participant
                        Im curious about the size and amount of mets also. Can they do a crainiotomy? I was 24 when it hit my brain and did the surgery and gamma knife. Im wondering why they want to do whole brain radiation. Theu had told me that the whole brain want a great idea because of my age. How long has it been since she was staged at 4?
                        I hope all the best for you two.
                        Teri
                        • June 7, 2012 at 10:59 pm
                        teri0915
                        Participant
                          Im curious about the size and amount of mets also. Can they do a crainiotomy? I was 24 when it hit my brain and did the surgery and gamma knife. Im wondering why they want to do whole brain radiation. Theu had told me that the whole brain want a great idea because of my age. How long has it been since she was staged at 4?
                          I hope all the best for you two.
                          Teri
                          • August 9, 2012 at 7:42 pm
                          jbowling4
                          Participant

                            Hello, Travis.

                            I found your post after I googled "Stage IV Melanoma Hemp Oil".  I am very familiar with the oil.  My cousin, who is currently stage iv, is going to start the oil this week hopefully. My good friends, Pete and Cristy O'Toole, actually know Rick Simpson and they have camps that teach people how to make the oil. They are on Facebook so please reach out to them.  I know they would be happy to help you. 

                            Here are some links to their facebook sites:

                            https://www.facebook.com/#!/UnclePetesOrganics

                            https://www.facebook.com/#!/events/369444056458459/

                             

                            Hope this helps!!!

                             

                            Judi

                            • August 9, 2012 at 7:42 pm
                            jbowling4
                            Participant

                              Hello, Travis.

                              I found your post after I googled "Stage IV Melanoma Hemp Oil".  I am very familiar with the oil.  My cousin, who is currently stage iv, is going to start the oil this week hopefully. My good friends, Pete and Cristy O'Toole, actually know Rick Simpson and they have camps that teach people how to make the oil. They are on Facebook so please reach out to them.  I know they would be happy to help you. 

                              Here are some links to their facebook sites:

                              https://www.facebook.com/#!/UnclePetesOrganics

                              https://www.facebook.com/#!/events/369444056458459/

                               

                              Hope this helps!!!

                               

                              Judi

                              • August 9, 2012 at 7:42 pm
                              jbowling4
                              Participant

                                Hello, Travis.

                                I found your post after I googled "Stage IV Melanoma Hemp Oil".  I am very familiar with the oil.  My cousin, who is currently stage iv, is going to start the oil this week hopefully. My good friends, Pete and Cristy O'Toole, actually know Rick Simpson and they have camps that teach people how to make the oil. They are on Facebook so please reach out to them.  I know they would be happy to help you. 

                                Here are some links to their facebook sites:

                                https://www.facebook.com/#!/UnclePetesOrganics

                                https://www.facebook.com/#!/events/369444056458459/

                                 

                                Hope this helps!!!

                                 

                                Judi

                            Viewing 11 reply threads
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