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Stage IV, 28 Brain Mets Treated Between – 2013 & 2015. Update! WOW!!!

Forums General Melanoma Community Stage IV, 28 Brain Mets Treated Between – 2013 & 2015. Update! WOW!!!

  • Post
    Patina
    Participant

      The WOW first! Because we all need to know that even when it looks like there is a set back things can still work out.

      In January of this year my Mom's MRI was still showing all 28 brain tumors that were treated by gamma knife.  This last week she had her 3 month follow up MRI.  Her radiologist only saw the area of her brain where the craniotomy ocurred and one tumor that was treated in August of 2015.

      Nothing else was visible! Nothing!

      So, either the remaining evidence of the 27 treated tumors is completely gone OR they are now so small that the MRI can't "see" them.

      HISTORY

      My Mom, 78 year old, was diagnosed with Stage IV in November of 2013. We didn't know it at the time, but she also had 3 brain mets that the radiologist missed!  Lucky for us we saw a second and then a third opinion. The third doctor had his radiologist look at her MRI and they found 3 brain tumors. (Even I knew there was a problem when I saw the screen…) 

      My Mom ended up having not 3 on the MRI.  8 of 9 brain mets were gamma knifed in early December of 2013. The radioncologist missed 1 of the 9, but we would not know that until April of 2014. 

      She started Yervoy 4 days after the first gamma knife treatment and did really really well. She only did 3 of the 4 infusions and got colitis, but even with that we saw a huge decrease in the subcutaneous tumors.

      Unfortunately, we found in accidently (another misdiagnosis!) that my Mom had 17 more brain tumors on top of the ones treated in late 2013. Needless to say it was a bit scary, but we didn't know there were that many. – We had switched all of her care to USC in Los Angles when we were told by a neuroncologist that we need to wait and see how the new tumors progressed before we talked about gamma knife. (Idiot!) – Within 24 hours we saw her new radiologist and we have been thrilled with her care and the results.

      A year or so went by and my Mom had great results between the Yervoy and the gamma knife, but did had a reoccurrence that needed to be treated with a craniotomy in June of 2015. We then found out that she had another brain tumor in August of 2015, which was treated with gamma knife. She started Keytruda in September of 2015. – My Mom had few side effects from all the treatment, with the exception of colitis and thrush. She went back to the DMV and retook all of her tests after the gamma knife treatment and has been driving since early 2015… No cognitive issues to report. Thank Goodness!

      Can't recommend her doctors or USC in Los Angeles enough. I can't imagine that she would still be alive or have all of her faculties without them.

    Viewing 11 reply threads
    • Replies
        sister of patient
        Participant

          Hi Patina,

          This is soooo encouraging to read. Thank you so much for sharing and I wish for your mom's continued improvement!!!

          Best thoughts always!

          Barb

           

          sister of patient
          Participant

            Hi Patina,

            This is soooo encouraging to read. Thank you so much for sharing and I wish for your mom's continued improvement!!!

            Best thoughts always!

            Barb

             

            sister of patient
            Participant

              Hi Patina,

              This is soooo encouraging to read. Thank you so much for sharing and I wish for your mom's continued improvement!!!

              Best thoughts always!

              Barb

               

              jennunicorn
              Participant

                Always nice to read some positive news on here once and a while. Your mom is a trooper! Thank you for sharing!

                jennunicorn
                Participant

                  Always nice to read some positive news on here once and a while. Your mom is a trooper! Thank you for sharing!

                  jennunicorn
                  Participant

                    Always nice to read some positive news on here once and a while. Your mom is a trooper! Thank you for sharing!

                    DZnDef
                    Participant

                      Hi Patina!  I'm so glad your Mom is doing well.  I had told my brother about your Mom after they discovered 4 brain mets.  He didn't want to do SRS but your Mom's results were promising so he agreed and was surprised at how "easy" the process was (the high-res MRI just before the procedure found an additional 6 tiny brain mets).  He unfortunately had a setback due to an overly aggressive taper schedule on the corticosteroids resulting in swelling but they got that under control and mentally, he's himself again.  I'm not sure if he would have gone through with it if I hadn't told him about your Mom.  Thanks so much for sharing.  I hope she continues to do well.

                        Patina
                        Participant

                          Hi Maggie,

                          My goal in sharing her story with others was to encourage and help others when they need to make decisions about treatment options.  I am thrilled that he decided to have the SRS surgery and will let my Mom know that her story helped him in his decision.

                          I'll keep your brother in my thoughts.

                          Thanks for sharing!

                           

                          Patina
                          Participant

                            Hi Maggie,

                            My goal in sharing her story with others was to encourage and help others when they need to make decisions about treatment options.  I am thrilled that he decided to have the SRS surgery and will let my Mom know that her story helped him in his decision.

                            I'll keep your brother in my thoughts.

                            Thanks for sharing!

                             

                            Patina
                            Participant

                              Hi Maggie,

                              My goal in sharing her story with others was to encourage and help others when they need to make decisions about treatment options.  I am thrilled that he decided to have the SRS surgery and will let my Mom know that her story helped him in his decision.

                              I'll keep your brother in my thoughts.

                              Thanks for sharing!

                               

                            DZnDef
                            Participant

                              Hi Patina!  I'm so glad your Mom is doing well.  I had told my brother about your Mom after they discovered 4 brain mets.  He didn't want to do SRS but your Mom's results were promising so he agreed and was surprised at how "easy" the process was (the high-res MRI just before the procedure found an additional 6 tiny brain mets).  He unfortunately had a setback due to an overly aggressive taper schedule on the corticosteroids resulting in swelling but they got that under control and mentally, he's himself again.  I'm not sure if he would have gone through with it if I hadn't told him about your Mom.  Thanks so much for sharing.  I hope she continues to do well.

                              DZnDef
                              Participant

                                Hi Patina!  I'm so glad your Mom is doing well.  I had told my brother about your Mom after they discovered 4 brain mets.  He didn't want to do SRS but your Mom's results were promising so he agreed and was surprised at how "easy" the process was (the high-res MRI just before the procedure found an additional 6 tiny brain mets).  He unfortunately had a setback due to an overly aggressive taper schedule on the corticosteroids resulting in swelling but they got that under control and mentally, he's himself again.  I'm not sure if he would have gone through with it if I hadn't told him about your Mom.  Thanks so much for sharing.  I hope she continues to do well.

                                kylez
                                Participant

                                  That's awesome, Patina! Those are really striking results from her new scans.  It's downright miraculous what neurosurgeons, Gamma Knife, and a touch of Yervoy and anti-PD1 can do. Especially when being done at a great center. Her story is an amazing one! 

                                  kylez
                                  Participant

                                    That's awesome, Patina! Those are really striking results from her new scans.  It's downright miraculous what neurosurgeons, Gamma Knife, and a touch of Yervoy and anti-PD1 can do. Especially when being done at a great center. Her story is an amazing one! 

                                    kylez
                                    Participant

                                      That's awesome, Patina! Those are really striking results from her new scans.  It's downright miraculous what neurosurgeons, Gamma Knife, and a touch of Yervoy and anti-PD1 can do. Especially when being done at a great center. Her story is an amazing one! 

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