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Brain Mets Surgery & Update
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Brain Mets Surgery & Update

› Forums › Mucosal Melanoma Community › Brain Mets Surgery & Update

  • Post
    • June 23, 2016 at 12:58 pm
    Maria C
    Participant

      Hi all,

      I've been thinking about everyone here lots this past week and am so very grateful to have this community to turn to. I've never been a fan of roller coasters – their extreme ups & downs are like torture to me – but that's what melanoma has felt like during this past year since my June 2015 diagnosis. I'm on this crazy ride and I can't get grounded.

      A week ago today, I "celebrated" my 1-year mucosal melanoma dx with my first craniotomy. Here's a recap of the Ride Down to that step:

      https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/brain-mets-progression 

      Ride Up: Very happy to report that the surgery went spectacularly well in that I have been in zero pain since waking up and am still 100% "me" – my husband says I haven't missed a beat. I still have my lion's roar and exercised it the moment my family gathered around HOURS LATE after recovery because they followed the hospital rules that said no visitors until everyone arrived (I have 4 20-yo's!, all traveling separately from CT to NYC). Who taught them you have to follow every hospital rule?? Not me!!

      So here's how it went down – my second opinion at Sloan with Dr. Gutin, a highly experienced neurosugeon with the same first name as my dad (Philip!), was characterized by an urgency that we need to move fast to get my tumor out. That was last Monday, he squeezed me in his schedule for last Thursday, and THEN on the day of the surgery, he pushed the operation up from 1 p.m. to 10 a.m. after viewing the pre-op MRI. It turns out the 4.3 cm mass contained a 1 cm tumor that escaped the gamma knife treatment and kept bleeding and growing. The anticipated 4-hour surgery only took 2 hours, and again, I woke up in no pain at all. Needless to say I am thrilled to have been in Dr. Gutin's care.

      But yesterday I left the first follow-up appointment with my new team at Sloan feeling deflated. It was really just an info-gathering session as I get on the team's radar as a new patient (Fridays are their team meeting days). There is still urgency because of the 2 new brain mets from the June scans, which of course indicates that the disease is progressing, and fast. While the oncologist commented that I don't look or act like someone who has my stage melanoma, he did make a comment that I have "uncontrolled brain mets" and mucosal melanoma is particularly aggressive. Putting two & two together, I am freaking out.

      It's so unnerving, as I feel like my brain is jiffy pop and I don't know when another "pop" will take off and take me down with it! 

      Again, so very grateful for this community, and for this particular day when my favorite childhood friend will be bringing me a pot of ginger-chicken-meatball soup from my ever-growing anti-cancer recipe trove…

    Viewing 17 reply threads
    • Replies
        • June 23, 2016 at 1:29 pm
        Bubbles
        Participant

          Roar away my dear!!!  You deserve to!!  Hang in there, enjoy your friend and your soup.  Hopefully, the team will come up with a great plan and you will soon be on a clear, successful treatment path rather than the crazy roller coaster you have been on!  Love, c

          • June 23, 2016 at 1:29 pm
          Bubbles
          Participant

            Roar away my dear!!!  You deserve to!!  Hang in there, enjoy your friend and your soup.  Hopefully, the team will come up with a great plan and you will soon be on a clear, successful treatment path rather than the crazy roller coaster you have been on!  Love, c

            • June 23, 2016 at 1:29 pm
            Bubbles
            Participant

              Roar away my dear!!!  You deserve to!!  Hang in there, enjoy your friend and your soup.  Hopefully, the team will come up with a great plan and you will soon be on a clear, successful treatment path rather than the crazy roller coaster you have been on!  Love, c

              • June 23, 2016 at 2:02 pm
              ed williams
              Participant

                Hi Maria, I am more a fan of Orville Redenbacker than Jiffy pop, but I do remember clearly using the same comparison when telling friends about my brain mets back in the fall of 2013. I used to go for a ride on my mountain bike before going in for appointments or scans and thinking to myself how long will it be before i will not be able to ride my bike!!!! It is now three years later I don't look like a stage 4 cancer patient. The only side effects I have ever had are from the drugs trying to get rid of the Melanoma!!!! Best wishes with the treatment plan!!!!Ed

                • June 23, 2016 at 2:02 pm
                ed williams
                Participant

                  Hi Maria, I am more a fan of Orville Redenbacker than Jiffy pop, but I do remember clearly using the same comparison when telling friends about my brain mets back in the fall of 2013. I used to go for a ride on my mountain bike before going in for appointments or scans and thinking to myself how long will it be before i will not be able to ride my bike!!!! It is now three years later I don't look like a stage 4 cancer patient. The only side effects I have ever had are from the drugs trying to get rid of the Melanoma!!!! Best wishes with the treatment plan!!!!Ed

                  • June 23, 2016 at 2:02 pm
                  ed williams
                  Participant

                    Hi Maria, I am more a fan of Orville Redenbacker than Jiffy pop, but I do remember clearly using the same comparison when telling friends about my brain mets back in the fall of 2013. I used to go for a ride on my mountain bike before going in for appointments or scans and thinking to myself how long will it be before i will not be able to ride my bike!!!! It is now three years later I don't look like a stage 4 cancer patient. The only side effects I have ever had are from the drugs trying to get rid of the Melanoma!!!! Best wishes with the treatment plan!!!!Ed

                    • June 23, 2016 at 2:59 pm
                    mary1233
                    Participant

                      Hello Maria – I am happy to hear that you got it out. When I first went to Sloan my head was spinning from how quickly things got done. They wanted the cancer out of me as soon as possible.

                      While it was frustrating to you that it was one of their meeting days, you should take solace in knowing that you were a topic of discussion.

                      Best to you.

                      Mary

                      • June 23, 2016 at 2:59 pm
                      mary1233
                      Participant

                        Hello Maria – I am happy to hear that you got it out. When I first went to Sloan my head was spinning from how quickly things got done. They wanted the cancer out of me as soon as possible.

                        While it was frustrating to you that it was one of their meeting days, you should take solace in knowing that you were a topic of discussion.

                        Best to you.

                        Mary

                        • June 23, 2016 at 2:59 pm
                        mary1233
                        Participant

                          Hello Maria – I am happy to hear that you got it out. When I first went to Sloan my head was spinning from how quickly things got done. They wanted the cancer out of me as soon as possible.

                          While it was frustrating to you that it was one of their meeting days, you should take solace in knowing that you were a topic of discussion.

                          Best to you.

                          Mary

                          • June 23, 2016 at 6:45 pm
                          JoshF
                          Participant

                            Oh Maria….how I love to hate the roller coaster ride you describe. I unfortunately have been on it as well and can empathize. I'm glad you're making progress in treatment plan, feels like your accomplishing something in beating this disease into submission. I know nothing ever goes fast enough; at least for me…I always said yesterday was good for me : )

                            Hang in there! I'm glad to hear suregery went well ams I'll pray for peace for you and to get on your treatment plan that will allow you to win!!!

                            Best,

                            Josh

                            • June 23, 2016 at 6:45 pm
                            JoshF
                            Participant

                              Oh Maria….how I love to hate the roller coaster ride you describe. I unfortunately have been on it as well and can empathize. I'm glad you're making progress in treatment plan, feels like your accomplishing something in beating this disease into submission. I know nothing ever goes fast enough; at least for me…I always said yesterday was good for me : )

                              Hang in there! I'm glad to hear suregery went well ams I'll pray for peace for you and to get on your treatment plan that will allow you to win!!!

                              Best,

                              Josh

                              • June 23, 2016 at 6:45 pm
                              JoshF
                              Participant

                                Oh Maria….how I love to hate the roller coaster ride you describe. I unfortunately have been on it as well and can empathize. I'm glad you're making progress in treatment plan, feels like your accomplishing something in beating this disease into submission. I know nothing ever goes fast enough; at least for me…I always said yesterday was good for me : )

                                Hang in there! I'm glad to hear suregery went well ams I'll pray for peace for you and to get on your treatment plan that will allow you to win!!!

                                Best,

                                Josh

                                • June 24, 2016 at 2:15 am
                                EB
                                Participant

                                  Hi Maria,

                                  I am brand new to the forum, and yours was the first post I noticed.  Sending you healing thoughts during this journey.  My husband has now had 2 craniotomies in the span of 5 months, and still has mets to the liver (2).  The brain mets have been aggressive and fast growing, causing us both a great deal of worry.  The last one was treated with gamma knife radiation, where they learned the tumor they were about to treat nearly doubled in size in 12 days because it bled (from 26.92 mm X 21.31mm to 43.2mm X 40.6 mm).  My husband appears completely healthy and normal, except for a very subtle droop on the left side of his mouth from losing a bit of necrosis during the past brain surgery (most likely from the gamma knife the same neurosurgeon performed days earlier). 

                                  My husband is scheduled for immunotherapy (ipo-nivo combo) starting 7/1.  After playing what we call "whack-a-mole" with all his melanoma cutaneous lesions and now metastatic tumors, I am hopeful this systemic treatment will work.  Are the Doctors discussing systemic treatment for you?  The new immunotherapies hold a great deal of promise, even for those with brain mets. 

                                  Wishing  you love and healing, and thanking you for your candor and sharing. 

                                  Kind regards, Elizabeth

                                  • June 24, 2016 at 2:15 am
                                  EB
                                  Participant

                                    Hi Maria,

                                    I am brand new to the forum, and yours was the first post I noticed.  Sending you healing thoughts during this journey.  My husband has now had 2 craniotomies in the span of 5 months, and still has mets to the liver (2).  The brain mets have been aggressive and fast growing, causing us both a great deal of worry.  The last one was treated with gamma knife radiation, where they learned the tumor they were about to treat nearly doubled in size in 12 days because it bled (from 26.92 mm X 21.31mm to 43.2mm X 40.6 mm).  My husband appears completely healthy and normal, except for a very subtle droop on the left side of his mouth from losing a bit of necrosis during the past brain surgery (most likely from the gamma knife the same neurosurgeon performed days earlier). 

                                    My husband is scheduled for immunotherapy (ipo-nivo combo) starting 7/1.  After playing what we call "whack-a-mole" with all his melanoma cutaneous lesions and now metastatic tumors, I am hopeful this systemic treatment will work.  Are the Doctors discussing systemic treatment for you?  The new immunotherapies hold a great deal of promise, even for those with brain mets. 

                                    Wishing  you love and healing, and thanking you for your candor and sharing. 

                                    Kind regards, Elizabeth

                                    • June 24, 2016 at 2:15 am
                                    EB
                                    Participant

                                      Hi Maria,

                                      I am brand new to the forum, and yours was the first post I noticed.  Sending you healing thoughts during this journey.  My husband has now had 2 craniotomies in the span of 5 months, and still has mets to the liver (2).  The brain mets have been aggressive and fast growing, causing us both a great deal of worry.  The last one was treated with gamma knife radiation, where they learned the tumor they were about to treat nearly doubled in size in 12 days because it bled (from 26.92 mm X 21.31mm to 43.2mm X 40.6 mm).  My husband appears completely healthy and normal, except for a very subtle droop on the left side of his mouth from losing a bit of necrosis during the past brain surgery (most likely from the gamma knife the same neurosurgeon performed days earlier). 

                                      My husband is scheduled for immunotherapy (ipo-nivo combo) starting 7/1.  After playing what we call "whack-a-mole" with all his melanoma cutaneous lesions and now metastatic tumors, I am hopeful this systemic treatment will work.  Are the Doctors discussing systemic treatment for you?  The new immunotherapies hold a great deal of promise, even for those with brain mets. 

                                      Wishing  you love and healing, and thanking you for your candor and sharing. 

                                      Kind regards, Elizabeth

                                      • June 24, 2016 at 3:05 am
                                      Maria C
                                      Participant

                                        Thank you everyone for your warm & gracious thoughts! Writing this post in the early a.m. helped me get grounded today, and now – filled to the brim with my friend's nurturance all afternoon – I am going to sleep in peace tonight. One day, one night, at a time …. that's Life!

                                        • June 24, 2016 at 3:05 am
                                        Maria C
                                        Participant

                                          Thank you everyone for your warm & gracious thoughts! Writing this post in the early a.m. helped me get grounded today, and now – filled to the brim with my friend's nurturance all afternoon – I am going to sleep in peace tonight. One day, one night, at a time …. that's Life!

                                          • June 24, 2016 at 3:05 am
                                          Maria C
                                          Participant

                                            Thank you everyone for your warm & gracious thoughts! Writing this post in the early a.m. helped me get grounded today, and now – filled to the brim with my friend's nurturance all afternoon – I am going to sleep in peace tonight. One day, one night, at a time …. that's Life!

                                        Viewing 17 reply threads

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