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Started ipi reinduction- almost a week after gamma knife
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Started ipi reinduction- almost a week after gamma knife

› Forums › General Melanoma Community › Started ipi reinduction- almost a week after gamma knife

  • Post
    • March 6, 2012 at 6:05 pm
    Lisa13
    Participant

      Hi Everyone,

      Hi Everyone,

      I just wanted to know who started ipi after finishing gamma knife?  I know Kyle is one of the people, so I wanted to know if there is anyone else?  I havn't had any steroids and I don't want to take any as I know it could mess up the ipi.  I might have to though, cause I do feel a bit of weakness in my right hand and it's quite possible it's the edema and I don't ever know if the ipi is causing inflammation.  I'm really hoping that ipi this time around keeps any other tumours growing and thankfully, I'm going every 2 months.

      Thanks,

      Lisa

    Viewing 5 reply threads
    • Replies
        • March 6, 2012 at 11:52 pm
        lyndaloo
        Participant

          Hi LIsa – my husband had ipi after tomotherapy to the brain which is similar to gama knife. Beginning his ipi treatnent he was showing a bit of edema but not enough to stop him from getting ipi.  After his third round of ipi he was getting numbness, fuzzy vision and headaches.  They did an emerg mri and cat scan to find out the edema had gone crazy, they are calling this a very rare side effect, but I feel that since he had some edema to start with the ipi caused inflammation, thus flared up the edema.  After getting on steroids he was able to get his last round of ipi and is now gradually weaning off the steroids. All the numbness and headaches have gone and eyesight is much better.  Tomorrow we go for his 16 week scan to find out the ipi results  (he had a scan mid way through during this and it showed the ipi was shrinking the tumors dramatically, it also showed the brain tumors to be inactive at that time as well).  We are hoping and praying for good scan results.  He is feeling great now and his body is adjusting to the weaning process, now at 8 mg a day from 16 mg. We are located in London Ontario and are keeping a close eye on the anti pd1 trial starting up in Toronto soon.  I hope this second round of ipi kicks in for you once and for alll.

          Sincerely,

          Lyndaloo

            • March 7, 2012 at 2:00 am
            Lisa13
            Participant

              Hi Lyndaloo,

              I'm located in Toronto, so its great to hear from my fellow Canadian :).  I see my Dr. tomorrow, so I'll be asking him about Anti PDI which they said would be arriving in May.  If I hear of anything, I'll let you know as my Dr. is at Princess Margaret.

              Since I'm on ipi reinduction again, I'm a bit nervous of the brain met's getting inflammerd and gettling worse.  I'm not at the stage of steroids yet, and hope I can get through this without it. It sounds like your husband may get some good results – especially the brain mets which now seem to be inactive.  

              I'm hoping for the best news with your husband's ipi!

              Lisa

              • March 12, 2012 at 6:44 pm
              lyndaloo
              Participant

                Thank you Lisa, my prayers are for you as well.  I hope you are faring well with the ipi re-induction.  Are you getting ipi the same way as before, once every 3 weeks for four treatments?

                Lyndaloo 

                • March 12, 2012 at 6:44 pm
                lyndaloo
                Participant

                  Thank you Lisa, my prayers are for you as well.  I hope you are faring well with the ipi re-induction.  Are you getting ipi the same way as before, once every 3 weeks for four treatments?

                  Lyndaloo 

                  • March 12, 2012 at 6:44 pm
                  lyndaloo
                  Participant

                    Thank you Lisa, my prayers are for you as well.  I hope you are faring well with the ipi re-induction.  Are you getting ipi the same way as before, once every 3 weeks for four treatments?

                    Lyndaloo 

                    • March 7, 2012 at 2:00 am
                    Lisa13
                    Participant

                      Hi Lyndaloo,

                      I'm located in Toronto, so its great to hear from my fellow Canadian :).  I see my Dr. tomorrow, so I'll be asking him about Anti PDI which they said would be arriving in May.  If I hear of anything, I'll let you know as my Dr. is at Princess Margaret.

                      Since I'm on ipi reinduction again, I'm a bit nervous of the brain met's getting inflammerd and gettling worse.  I'm not at the stage of steroids yet, and hope I can get through this without it. It sounds like your husband may get some good results – especially the brain mets which now seem to be inactive.  

                      I'm hoping for the best news with your husband's ipi!

                      Lisa

                      • March 7, 2012 at 2:00 am
                      Lisa13
                      Participant

                        Hi Lyndaloo,

                        I'm located in Toronto, so its great to hear from my fellow Canadian :).  I see my Dr. tomorrow, so I'll be asking him about Anti PDI which they said would be arriving in May.  If I hear of anything, I'll let you know as my Dr. is at Princess Margaret.

                        Since I'm on ipi reinduction again, I'm a bit nervous of the brain met's getting inflammerd and gettling worse.  I'm not at the stage of steroids yet, and hope I can get through this without it. It sounds like your husband may get some good results – especially the brain mets which now seem to be inactive.  

                        I'm hoping for the best news with your husband's ipi!

                        Lisa

                      • March 6, 2012 at 11:52 pm
                      lyndaloo
                      Participant

                        Hi LIsa – my husband had ipi after tomotherapy to the brain which is similar to gama knife. Beginning his ipi treatnent he was showing a bit of edema but not enough to stop him from getting ipi.  After his third round of ipi he was getting numbness, fuzzy vision and headaches.  They did an emerg mri and cat scan to find out the edema had gone crazy, they are calling this a very rare side effect, but I feel that since he had some edema to start with the ipi caused inflammation, thus flared up the edema.  After getting on steroids he was able to get his last round of ipi and is now gradually weaning off the steroids. All the numbness and headaches have gone and eyesight is much better.  Tomorrow we go for his 16 week scan to find out the ipi results  (he had a scan mid way through during this and it showed the ipi was shrinking the tumors dramatically, it also showed the brain tumors to be inactive at that time as well).  We are hoping and praying for good scan results.  He is feeling great now and his body is adjusting to the weaning process, now at 8 mg a day from 16 mg. We are located in London Ontario and are keeping a close eye on the anti pd1 trial starting up in Toronto soon.  I hope this second round of ipi kicks in for you once and for alll.

                        Sincerely,

                        Lyndaloo

                        • March 6, 2012 at 11:52 pm
                        lyndaloo
                        Participant

                          Hi LIsa – my husband had ipi after tomotherapy to the brain which is similar to gama knife. Beginning his ipi treatnent he was showing a bit of edema but not enough to stop him from getting ipi.  After his third round of ipi he was getting numbness, fuzzy vision and headaches.  They did an emerg mri and cat scan to find out the edema had gone crazy, they are calling this a very rare side effect, but I feel that since he had some edema to start with the ipi caused inflammation, thus flared up the edema.  After getting on steroids he was able to get his last round of ipi and is now gradually weaning off the steroids. All the numbness and headaches have gone and eyesight is much better.  Tomorrow we go for his 16 week scan to find out the ipi results  (he had a scan mid way through during this and it showed the ipi was shrinking the tumors dramatically, it also showed the brain tumors to be inactive at that time as well).  We are hoping and praying for good scan results.  He is feeling great now and his body is adjusting to the weaning process, now at 8 mg a day from 16 mg. We are located in London Ontario and are keeping a close eye on the anti pd1 trial starting up in Toronto soon.  I hope this second round of ipi kicks in for you once and for alll.

                          Sincerely,

                          Lyndaloo

                          • March 14, 2012 at 12:19 pm
                          shellebrownies
                          Participant

                            Lisa,

                            Just popping in to let you know I'm thinking of you. I don't post that often anymore, but I still check in here to see how people are doing. I take a special interest in following along with you and boot2aboot, since both of you and Don were diagnosed around the same time. 

                            I am glad they have been able to keep the brain mets in check and I sincerely hope that the ipi will knock the rest of it out for you!

                            Michelle, wife of Don

                              • April 7, 2012 at 11:40 pm
                              Lisa13
                              Participant

                                Hi Michelle.

                                It was so nice to hear from you.  I know you've been through so much, but sometimes it just feels better not being on this board.

                                I have my brain mri next Friday and I'm hoping the very best. I've been making sure I've checked every 2 months, so that the ones they found were small.  I hope over this second ipi reonduction, it will keep the brain mets away for a bit. It's possible.

                                I don't take alot of time on this website because I just want to live my life the best way possible. Right now, O'm completely normal and feel normal so that's good news for me.

                                I hope you're doing okay Michelle and wish you all the best. 

                                Lisa

                                • April 7, 2012 at 11:40 pm
                                Lisa13
                                Participant

                                  Hi Michelle.

                                  It was so nice to hear from you.  I know you've been through so much, but sometimes it just feels better not being on this board.

                                  I have my brain mri next Friday and I'm hoping the very best. I've been making sure I've checked every 2 months, so that the ones they found were small.  I hope over this second ipi reonduction, it will keep the brain mets away for a bit. It's possible.

                                  I don't take alot of time on this website because I just want to live my life the best way possible. Right now, O'm completely normal and feel normal so that's good news for me.

                                  I hope you're doing okay Michelle and wish you all the best. 

                                  Lisa

                                  • April 7, 2012 at 11:40 pm
                                  Lisa13
                                  Participant

                                    Hi Michelle.

                                    It was so nice to hear from you.  I know you've been through so much, but sometimes it just feels better not being on this board.

                                    I have my brain mri next Friday and I'm hoping the very best. I've been making sure I've checked every 2 months, so that the ones they found were small.  I hope over this second ipi reonduction, it will keep the brain mets away for a bit. It's possible.

                                    I don't take alot of time on this website because I just want to live my life the best way possible. Right now, O'm completely normal and feel normal so that's good news for me.

                                    I hope you're doing okay Michelle and wish you all the best. 

                                    Lisa

                                  • March 14, 2012 at 12:19 pm
                                  shellebrownies
                                  Participant

                                    Lisa,

                                    Just popping in to let you know I'm thinking of you. I don't post that often anymore, but I still check in here to see how people are doing. I take a special interest in following along with you and boot2aboot, since both of you and Don were diagnosed around the same time. 

                                    I am glad they have been able to keep the brain mets in check and I sincerely hope that the ipi will knock the rest of it out for you!

                                    Michelle, wife of Don

                                    • March 14, 2012 at 12:19 pm
                                    shellebrownies
                                    Participant

                                      Lisa,

                                      Just popping in to let you know I'm thinking of you. I don't post that often anymore, but I still check in here to see how people are doing. I take a special interest in following along with you and boot2aboot, since both of you and Don were diagnosed around the same time. 

                                      I am glad they have been able to keep the brain mets in check and I sincerely hope that the ipi will knock the rest of it out for you!

                                      Michelle, wife of Don

                                  Viewing 5 reply threads
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