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lhaley

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      lhaley
      Participant

        A few years ago Kevin went to someone in Emory but I can't remember the Drs name.   I drive from Anderson SC to Charlotte NC.   As Kevin's became more aggressive he drove to Nasville. There are a few melanoma specialists there in Sarah Cannon Center and Vanderbilt.

        Linda

        lhaley
        Participant

          A few years ago Kevin went to someone in Emory but I can't remember the Drs name.   I drive from Anderson SC to Charlotte NC.   As Kevin's became more aggressive he drove to Nasville. There are a few melanoma specialists there in Sarah Cannon Center and Vanderbilt.

          Linda

          lhaley
          Participant

            A few years ago Kevin went to someone in Emory but I can't remember the Drs name.   I drive from Anderson SC to Charlotte NC.   As Kevin's became more aggressive he drove to Nasville. There are a few melanoma specialists there in Sarah Cannon Center and Vanderbilt.

            Linda

            lhaley
            Participant

              Why don't you send a copy of the CT on a disc to your Seattle oncologist and ask for his opinion. 

              I do know that many don't have scans while on interfuron because false negatives are often given. 

              I hope it ends up being nothing.

              Linda

              lhaley
              Participant

                Why don't you send a copy of the CT on a disc to your Seattle oncologist and ask for his opinion. 

                I do know that many don't have scans while on interfuron because false negatives are often given. 

                I hope it ends up being nothing.

                Linda

                lhaley
                Participant

                  Why don't you send a copy of the CT on a disc to your Seattle oncologist and ask for his opinion. 

                  I do know that many don't have scans while on interfuron because false negatives are often given. 

                  I hope it ends up being nothing.

                  Linda

                  lhaley
                  Participant

                    Denise,

                    I am also doing WBR however I did SRS first , surgery next and then 4 months later more brain mets, Zelboraf and when my mel started to come back it became agressive – now doing wbr.   I have been handling this except for the constant nauseausness.  I am starting Ipi next week before the wbr is quite finished.

                    Originally my mel specialist met with the radiologist and nuerosurgeon and decided to go with SRS. Mine was very large and deep.  Edema was so bad I moved on to surgery. They found out that the tumor was 70% dead.   My team told me that brain tumors – when there is just 1 there are often great sucess. In my case it wasn't but that doesn't mean for many.   Jag often is on this board and he had 2 mets that radiation was not successful for him so he had surgery. He has been NED now for a few years.

                    I realize you've made your decision but ask tomorrow if they are going with WBR because they don't do SRS.  My local oncologist did that to me. She orginally told me to do WBR. Then I found out that she didn't have the local hospital to do SRS. That or gamma knife must have the more advanced radiation machines.  The other question to ask them if this was because of your insurance.  You just want to made your decision based on educational reasons.  Go to the MIF site and look at the webnar's on radiation on the brain.

                    What ever you go with I hope your tumor is goine soon.

                    Linda

                    lhaley
                    Participant

                      Denise,

                      I am also doing WBR however I did SRS first , surgery next and then 4 months later more brain mets, Zelboraf and when my mel started to come back it became agressive – now doing wbr.   I have been handling this except for the constant nauseausness.  I am starting Ipi next week before the wbr is quite finished.

                      Originally my mel specialist met with the radiologist and nuerosurgeon and decided to go with SRS. Mine was very large and deep.  Edema was so bad I moved on to surgery. They found out that the tumor was 70% dead.   My team told me that brain tumors – when there is just 1 there are often great sucess. In my case it wasn't but that doesn't mean for many.   Jag often is on this board and he had 2 mets that radiation was not successful for him so he had surgery. He has been NED now for a few years.

                      I realize you've made your decision but ask tomorrow if they are going with WBR because they don't do SRS.  My local oncologist did that to me. She orginally told me to do WBR. Then I found out that she didn't have the local hospital to do SRS. That or gamma knife must have the more advanced radiation machines.  The other question to ask them if this was because of your insurance.  You just want to made your decision based on educational reasons.  Go to the MIF site and look at the webnar's on radiation on the brain.

                      What ever you go with I hope your tumor is goine soon.

                      Linda

                      lhaley
                      Participant

                        Denise,

                        I am also doing WBR however I did SRS first , surgery next and then 4 months later more brain mets, Zelboraf and when my mel started to come back it became agressive – now doing wbr.   I have been handling this except for the constant nauseausness.  I am starting Ipi next week before the wbr is quite finished.

                        Originally my mel specialist met with the radiologist and nuerosurgeon and decided to go with SRS. Mine was very large and deep.  Edema was so bad I moved on to surgery. They found out that the tumor was 70% dead.   My team told me that brain tumors – when there is just 1 there are often great sucess. In my case it wasn't but that doesn't mean for many.   Jag often is on this board and he had 2 mets that radiation was not successful for him so he had surgery. He has been NED now for a few years.

                        I realize you've made your decision but ask tomorrow if they are going with WBR because they don't do SRS.  My local oncologist did that to me. She orginally told me to do WBR. Then I found out that she didn't have the local hospital to do SRS. That or gamma knife must have the more advanced radiation machines.  The other question to ask them if this was because of your insurance.  You just want to made your decision based on educational reasons.  Go to the MIF site and look at the webnar's on radiation on the brain.

                        What ever you go with I hope your tumor is goine soon.

                        Linda

                        lhaley
                        Participant

                          As your brother is doing the wash out you might want to look further into the antipd 1 .  My onc told me that most of the antipd1 trials now mean you have to do ipi first.  You might ask the Dr. thought if your brother needs to do the ipi first.  Also antipd 1 has to have stable brain mets. 

                          When I went off of the zel my Dr told me that the chemical itself will be out of my body in about 3 days but side effects will take about 3 weeks. He told me to stay out of the sun and continue to protect myself. He also told me that for the rest of my life I am at a high risk for squamish cell.  

                          You are a great sister to your brother!

                          Linda

                          lhaley
                          Participant

                            As your brother is doing the wash out you might want to look further into the antipd 1 .  My onc told me that most of the antipd1 trials now mean you have to do ipi first.  You might ask the Dr. thought if your brother needs to do the ipi first.  Also antipd 1 has to have stable brain mets. 

                            When I went off of the zel my Dr told me that the chemical itself will be out of my body in about 3 days but side effects will take about 3 weeks. He told me to stay out of the sun and continue to protect myself. He also told me that for the rest of my life I am at a high risk for squamish cell.  

                            You are a great sister to your brother!

                            Linda

                            lhaley
                            Participant

                              As your brother is doing the wash out you might want to look further into the antipd 1 .  My onc told me that most of the antipd1 trials now mean you have to do ipi first.  You might ask the Dr. thought if your brother needs to do the ipi first.  Also antipd 1 has to have stable brain mets. 

                              When I went off of the zel my Dr told me that the chemical itself will be out of my body in about 3 days but side effects will take about 3 weeks. He told me to stay out of the sun and continue to protect myself. He also told me that for the rest of my life I am at a high risk for squamish cell.  

                              You are a great sister to your brother!

                              Linda

                              lhaley
                              Participant

                                Denise,

                                I've been warned 2 different reasons for nausea.  Brain mets can cause the problem and wbr also can cause it.  They/ve given me 2 meds that I'm to alternate with.  I've lost about 10 pounds since I started 2 weeks ago. ugh….

                                 

                                On Monday I start with ippi and will have 2 treatments of radiation that will be Wed and Thursday. 

                                 

                                I haven't been overly tired. I was actually more tired on zelboraf than on the radiation!  I usually take about a 30 min nap when I get home and I tend to sleep in a little longer in the morning. 

                                I do wonder why they do the treatments over different time.  You are 10 days , I'm 15 days and I've heard of some over 17 days.  I met with the radiologist yesterday and meant to ask him but I forgot.

                                My hair started really falling out on the 10th day. I was already wearing a wig because it was so thin.  My son bought me a beautiful pair of earings to wear with the scarf.

                                I hope your going to fly through the wbr. Keep posting to see how your doing.

                                Linda

                                lhaley
                                Participant

                                  Denise,

                                  I've been warned 2 different reasons for nausea.  Brain mets can cause the problem and wbr also can cause it.  They/ve given me 2 meds that I'm to alternate with.  I've lost about 10 pounds since I started 2 weeks ago. ugh….

                                   

                                  On Monday I start with ippi and will have 2 treatments of radiation that will be Wed and Thursday. 

                                   

                                  I haven't been overly tired. I was actually more tired on zelboraf than on the radiation!  I usually take about a 30 min nap when I get home and I tend to sleep in a little longer in the morning. 

                                  I do wonder why they do the treatments over different time.  You are 10 days , I'm 15 days and I've heard of some over 17 days.  I met with the radiologist yesterday and meant to ask him but I forgot.

                                  My hair started really falling out on the 10th day. I was already wearing a wig because it was so thin.  My son bought me a beautiful pair of earings to wear with the scarf.

                                  I hope your going to fly through the wbr. Keep posting to see how your doing.

                                  Linda

                                  lhaley
                                  Participant

                                    Denise,

                                    I've been warned 2 different reasons for nausea.  Brain mets can cause the problem and wbr also can cause it.  They/ve given me 2 meds that I'm to alternate with.  I've lost about 10 pounds since I started 2 weeks ago. ugh….

                                     

                                    On Monday I start with ippi and will have 2 treatments of radiation that will be Wed and Thursday. 

                                     

                                    I haven't been overly tired. I was actually more tired on zelboraf than on the radiation!  I usually take about a 30 min nap when I get home and I tend to sleep in a little longer in the morning. 

                                    I do wonder why they do the treatments over different time.  You are 10 days , I'm 15 days and I've heard of some over 17 days.  I met with the radiologist yesterday and meant to ask him but I forgot.

                                    My hair started really falling out on the 10th day. I was already wearing a wig because it was so thin.  My son bought me a beautiful pair of earings to wear with the scarf.

                                    I hope your going to fly through the wbr. Keep posting to see how your doing.

                                    Linda

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