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More Surprises

› Forums › General Melanoma Community › More Surprises

  • Post
    • August 5, 2013 at 5:33 pm
    DeniseK
    Participant

      Hello Everyone,

      Hello Everyone,

      Well this Melanoma is full of surprises.  I went in for my Gamma Knife this last Thursday thinking they were going to zap 5 of my 7 brain mets.  SURPRISE I had 18!!  He said he used double contrast so he could see every little tiny met I had so some of them were less than 1mm but I spent ALL day at the center with that Dang Frame bolted to my head, which by the way was the worst part.  So now I wait for 30 days and I should be brain stable, then another 30 days and I should hopefully be stable to go into a trial.  I'm getting my 3rd infusion of Ipi on August 15th with the last dose on Sept 5th.  This Thursday I will be switching from Z to Dabrafenib, really surprised my insurance covered it. 

      The pain in my arm has subsided, just mild tumor pain which I hope is the t-cells attacking but havent noticed much if any decease in the size of the tumor.  It appears to be stable which I will take!

      I'm hoping by 1st of October to be in trial for Anti PD 1 if my brain cooperates. 

      I'm not having any severe side effects from combining Z with Ipi yet.  I'm taking a Reishi Mushroom supplement which helps protect your liver so I think that's helping.

      Just wanted to update everyone on my treatment and share my surprises.

      All my best to all,

      Denise

    Viewing 17 reply threads
    • Replies
        • August 5, 2013 at 6:12 pm
        POW
        Participant

          Oh, Denise! You must have been so shocked and disappointed when you first got that news. Ugh! I'm so sorry that you have to go through all this. 

          Frightening and disappointing as this is, I am very glad that your radiation oncologist did go the extra mile to find these small mets. I mean, there were there, anyway. It's better that you know about them and get them zapped now rather than be in blissful ignorance only to have them grow and cause you big problems later on. But still, last Thursday must have been a pretty miserable day for you. 

          Like you, I am very hopeful that between the SRS, the ipi and the Zelboraf (soon to be Dabrafenib), you will finally get your brain mets stabilized and be able to start the clinicial trial in October. I'm also glad that your pain has subsided and your side effects are tolerable. I guess the Reishi Mushroom supplement really is working. 

          Hang in there. You are still on the path to recovery!

          • August 5, 2013 at 6:12 pm
          POW
          Participant

            Oh, Denise! You must have been so shocked and disappointed when you first got that news. Ugh! I'm so sorry that you have to go through all this. 

            Frightening and disappointing as this is, I am very glad that your radiation oncologist did go the extra mile to find these small mets. I mean, there were there, anyway. It's better that you know about them and get them zapped now rather than be in blissful ignorance only to have them grow and cause you big problems later on. But still, last Thursday must have been a pretty miserable day for you. 

            Like you, I am very hopeful that between the SRS, the ipi and the Zelboraf (soon to be Dabrafenib), you will finally get your brain mets stabilized and be able to start the clinicial trial in October. I'm also glad that your pain has subsided and your side effects are tolerable. I guess the Reishi Mushroom supplement really is working. 

            Hang in there. You are still on the path to recovery!

            • August 5, 2013 at 6:12 pm
            POW
            Participant

              Oh, Denise! You must have been so shocked and disappointed when you first got that news. Ugh! I'm so sorry that you have to go through all this. 

              Frightening and disappointing as this is, I am very glad that your radiation oncologist did go the extra mile to find these small mets. I mean, there were there, anyway. It's better that you know about them and get them zapped now rather than be in blissful ignorance only to have them grow and cause you big problems later on. But still, last Thursday must have been a pretty miserable day for you. 

              Like you, I am very hopeful that between the SRS, the ipi and the Zelboraf (soon to be Dabrafenib), you will finally get your brain mets stabilized and be able to start the clinicial trial in October. I'm also glad that your pain has subsided and your side effects are tolerable. I guess the Reishi Mushroom supplement really is working. 

              Hang in there. You are still on the path to recovery!

              • August 5, 2013 at 6:39 pm
              Owl
              Participant

                Denise, what disappointing surprises, just good that they were visible and got treated as POW said. You are having a really hard time in your find. From the bottom of my heart I wish that your October plan will work. If not for you, for whome shall this plan work, you are so strong and your positive attitude is admirable.

                All the best, Jenny

                • August 5, 2013 at 6:39 pm
                Owl
                Participant

                  Denise, what disappointing surprises, just good that they were visible and got treated as POW said. You are having a really hard time in your find. From the bottom of my heart I wish that your October plan will work. If not for you, for whome shall this plan work, you are so strong and your positive attitude is admirable.

                  All the best, Jenny

                  • August 5, 2013 at 6:39 pm
                  Owl
                  Participant

                    Denise, what disappointing surprises, just good that they were visible and got treated as POW said. You are having a really hard time in your find. From the bottom of my heart I wish that your October plan will work. If not for you, for whome shall this plan work, you are so strong and your positive attitude is admirable.

                    All the best, Jenny

                    • August 5, 2013 at 6:44 pm
                    awillett1991
                    Participant
                      Denise – what a shock I’m sure that was – I’m so sorry it worked out that way. I’m so glad they were able to treat them. Are there are Merck PD1 trial openings near you? Mine only required 4 weeks stability in the brain. Continuing to pray for you. Let us all know how the Dabrafenib goes. Lots of people talking about switching but you’re a real pioneer I believe!!

                      Amy

                      • August 5, 2013 at 6:44 pm
                      awillett1991
                      Participant
                        Denise – what a shock I’m sure that was – I’m so sorry it worked out that way. I’m so glad they were able to treat them. Are there are Merck PD1 trial openings near you? Mine only required 4 weeks stability in the brain. Continuing to pray for you. Let us all know how the Dabrafenib goes. Lots of people talking about switching but you’re a real pioneer I believe!!

                        Amy

                        • August 5, 2013 at 6:44 pm
                        awillett1991
                        Participant
                          Denise – what a shock I’m sure that was – I’m so sorry it worked out that way. I’m so glad they were able to treat them. Are there are Merck PD1 trial openings near you? Mine only required 4 weeks stability in the brain. Continuing to pray for you. Let us all know how the Dabrafenib goes. Lots of people talking about switching but you’re a real pioneer I believe!!

                          Amy

                          • August 5, 2013 at 11:10 pm
                          aldakota22
                          Participant

                            So much on your plate.Still you are in to another course of treatment with Dabrafenib.Praying it does its stuff to get you into the trial.Keep your PMA. Beat the Beast.      Al

                            • August 5, 2013 at 11:10 pm
                            aldakota22
                            Participant

                              So much on your plate.Still you are in to another course of treatment with Dabrafenib.Praying it does its stuff to get you into the trial.Keep your PMA. Beat the Beast.      Al

                              • August 5, 2013 at 11:10 pm
                              aldakota22
                              Participant

                                So much on your plate.Still you are in to another course of treatment with Dabrafenib.Praying it does its stuff to get you into the trial.Keep your PMA. Beat the Beast.      Al

                                • August 6, 2013 at 1:35 am
                                Everymoment
                                Participant
                                  You are in my evening prayers.
                                  Isabell

                                  • August 6, 2013 at 1:35 am
                                  Everymoment
                                  Participant
                                    You are in my evening prayers.
                                    Isabell

                                    • August 6, 2013 at 1:35 am
                                    Everymoment
                                    Participant
                                      You are in my evening prayers.
                                      Isabell

                                      • August 8, 2013 at 8:19 pm
                                      Tina D
                                      Participant

                                        Not good surprises 🙁   . I am sorry and can imagine how disheartening that was. I am glad they have been dealt with NOW so they weren't a surprise waiting for the next set of scans. So glad you are tolerating the ipi/zel combo! Hoping for stability…or improvement for you over the next weeks and for quick and easy entry into the PD1 trial. Thank you for posting this update, have been wondering how you are faring. Hang in there!!

                                        Tina

                                        • August 8, 2013 at 8:19 pm
                                        Tina D
                                        Participant

                                          Not good surprises 🙁   . I am sorry and can imagine how disheartening that was. I am glad they have been dealt with NOW so they weren't a surprise waiting for the next set of scans. So glad you are tolerating the ipi/zel combo! Hoping for stability…or improvement for you over the next weeks and for quick and easy entry into the PD1 trial. Thank you for posting this update, have been wondering how you are faring. Hang in there!!

                                          Tina

                                          • August 8, 2013 at 8:19 pm
                                          Tina D
                                          Participant

                                            Not good surprises 🙁   . I am sorry and can imagine how disheartening that was. I am glad they have been dealt with NOW so they weren't a surprise waiting for the next set of scans. So glad you are tolerating the ipi/zel combo! Hoping for stability…or improvement for you over the next weeks and for quick and easy entry into the PD1 trial. Thank you for posting this update, have been wondering how you are faring. Hang in there!!

                                            Tina

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