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How your world can change quickly when you have Stage 4 melanoma

Forums Caregiver Community How your world can change quickly when you have Stage 4 melanoma

  • Post
    nickmac56
    Participant

      Two weeks ago I was ready to take my wife to Bethesda and the National Cancer Institute for assessment and future participation in clinical trials. We were scheduled to leave on the 13th and be assessed on the 14th. Although my wife had just had a PET/CT scan (in connection with her follow-up on Ipillimumab/Yervoy – which didn't work for her) they wanted a brain MRI. So she had one done on Friday the 8th. On Monday the 11th our oncologist told us they had found two small brain tumors. Devastating news, as he was pretty sure it knocked us out of clinical trial participation.

      Two weeks ago I was ready to take my wife to Bethesda and the National Cancer Institute for assessment and future participation in clinical trials. We were scheduled to leave on the 13th and be assessed on the 14th. Although my wife had just had a PET/CT scan (in connection with her follow-up on Ipillimumab/Yervoy – which didn't work for her) they wanted a brain MRI. So she had one done on Friday the 8th. On Monday the 11th our oncologist told us they had found two small brain tumors. Devastating news, as he was pretty sure it knocked us out of clinical trial participation. But we left his office lined up with an appointment with the gamma/cyber knife radiologists and my reassurances to her that I had read lots of folks on this board had successfully undergone brain tumor treatment with radiation. We were also ready to undergo a course of IL-2, her only remaining option. We got home, told our one son, called and told the other, and then fate intervened. She had a stroke; we found out later that night from the brain surgeon one of the tumors burst (it was only 11 millimeters). He characterized melanoma tumors as "bleeders". She survived, but we have been in the hospital the last 12 days, getting home last night. She has the horseshoe scar of honor and the shaved head. She will have to have radiation on the bits of the tumors that didn't come out. But this is a significant setback as it also delays systemic treatment as she has to wait until her brain calms down from the recent surgery and then the radiation. She was also unfortunate enough to suffer a condition called cerebral sodium wasting – about 4 days after the initial surgery the brain loses all capacity to regulate sodium levels and as a net result your brain swells and it's a big problem. Thus the 12 day stay.

      Despite the excellent and timely intervention of the brain surgeon, there are lasting effects of the surgery; many are what we hope will be temporary ones or ones her brain can rewire. So not only is she a melanoma patient, but a stroke victim. The worst is loss of peripheral vision on the right side which is permanent. She has balance, memory, and cognitive capability loss, plus aphasia which is rapidly diminishing. Despite all this she retains all her personality and humor. She feels remarkably calm and anxiety free about both her stroke recovery and future melanoma treatment and course of cancer. She jokes it might be because of the brain insult (which it probably is), but who cares as long as it's a positive condition. She starts rehab this week.

      From a caregiver perspective it changes the game a lot. She has no capacity for organization or management of her condition. So I am the one giving her all the pills and scheduling and managing both the rehab and cancer treatment processes. Fortunately, I am semi-retired and work out of our home and we have a lot of friends and family for support and several have activated a web based support system that we can tap for anything from meals to sitting with her to driving her if needed (she will never drive again). I cannot imagine how others with less support could cope, it has and will be a daunting challenge.

      Our oncologist characterized melanoma when she was first diagnosed as a capricious disease, you just never know how it will play out for each individual. I can know attest to that description.

       

      NIck

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        Carmon in NM
        Participant

          Hi Nick – I have been exactly where you and your wife are. Last June I was airlifted to UNM's neurosurgical ICU because an undiagnosed melanoma brain met began bleeding into my brain. I lost peripheral vision on the left side and even temporarily lost all vision in that eye. I had some other permanent losses – shape and color recognition and some of my language skills. Also short term memory and cognitive skills. I highly recommend Jill Bolte-Taylor's book, "My Stroke of Insight'. It will help you both to understand what has happened and that your brain CAN heal and that you can build new neural pathways to make up for the ones that were damaged.

          Also, it has been almost a year for me now and after Gamma Knife Surgery the month after the craniotomy, then six months of chemotherapy in a clinical drug trial, I have had no recurrence. I have adjusted to the loss of peripheral vision and the other things only bother me when I let myself get too tired. Like your wife, I woke up from brain surgery filled with joy and optimism and nearly a year later, I still feel that way. In fact, the first things I said when I woke up were jokes!

          One of the best moments for me was when my husband also became able to make jokes about my new mental state – in that moment I knew we would both be okay. Now we both tell people that intellectually I'm now just 'normal' instead of scary smart!

          My best wishes, hopes and prayers for you both and please keep us updated on how things are going! Carmon in NM

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            Vermont_Donna
            Participant

              Dear Nick,

                Wow, that is so much going on!  I am hoping for an uneventful recovery for your wife and that she can go on to do Il-2 or whatever is deemed best. I am so glad that you work from home and that you have a good support system in place.

              Keeping you both in my thoughts,

              Vermont_Donna, stage 3a

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              Vermont_Donna
              Participant

                Dear Nick,

                  Wow, that is so much going on!  I am hoping for an uneventful recovery for your wife and that she can go on to do Il-2 or whatever is deemed best. I am so glad that you work from home and that you have a good support system in place.

                Keeping you both in my thoughts,

                Vermont_Donna, stage 3a

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                nickmac56
                Participant

                  Carmon, thank you for sharing your story, that is encouraging. The nurses at the hospital told me about Jill's book and I downloaded and read it on my Kindle during our stay. The advice and perspectives have already proven helpful.

                  She sent out this message on Facebook today: "Thank you for all the support. I have felt very loved. I don't really remember the bad parts. I'm very appreciative and look forward to spending time with everyone over the next several months and feel very grateful. It's all good. Couldn't be more fortunate." and "brain damage isn't all bad". "hahaha".

                  Kind of echos your story.

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                  nickmac56
                  Participant

                    Carmon, thank you for sharing your story, that is encouraging. The nurses at the hospital told me about Jill's book and I downloaded and read it on my Kindle during our stay. The advice and perspectives have already proven helpful.

                    She sent out this message on Facebook today: "Thank you for all the support. I have felt very loved. I don't really remember the bad parts. I'm very appreciative and look forward to spending time with everyone over the next several months and feel very grateful. It's all good. Couldn't be more fortunate." and "brain damage isn't all bad". "hahaha".

                    Kind of echos your story.

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                  Carmon in NM
                  Participant

                    Hi Nick – I have been exactly where you and your wife are. Last June I was airlifted to UNM's neurosurgical ICU because an undiagnosed melanoma brain met began bleeding into my brain. I lost peripheral vision on the left side and even temporarily lost all vision in that eye. I had some other permanent losses – shape and color recognition and some of my language skills. Also short term memory and cognitive skills. I highly recommend Jill Bolte-Taylor's book, "My Stroke of Insight'. It will help you both to understand what has happened and that your brain CAN heal and that you can build new neural pathways to make up for the ones that were damaged.

                    Also, it has been almost a year for me now and after Gamma Knife Surgery the month after the craniotomy, then six months of chemotherapy in a clinical drug trial, I have had no recurrence. I have adjusted to the loss of peripheral vision and the other things only bother me when I let myself get too tired. Like your wife, I woke up from brain surgery filled with joy and optimism and nearly a year later, I still feel that way. In fact, the first things I said when I woke up were jokes!

                    One of the best moments for me was when my husband also became able to make jokes about my new mental state – in that moment I knew we would both be okay. Now we both tell people that intellectually I'm now just 'normal' instead of scary smart!

                    My best wishes, hopes and prayers for you both and please keep us updated on how things are going! Carmon in NM

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                    Lori C
                    Participant

                      It's a lot to deal with and the set back is frustrating and difficult but it sounds like you are both incredible fighters and meeting the challenges day by day.  May she heal as completely as possible and then some! (I always like a miracle : )

                       

                      Lori

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                      Lori C
                      Participant

                        It's a lot to deal with and the set back is frustrating and difficult but it sounds like you are both incredible fighters and meeting the challenges day by day.  May she heal as completely as possible and then some! (I always like a miracle : )

                         

                        Lori

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                        Carol Taylor
                        Participant

                          Nick,

                          You sound like an amazing husband & care-giver and your wife sounds like an amazing and encouraging-beyond-words woman and fighter! I can only imagine your pain but you've got a wonderful attitude and I admire you & your beloved greatly! 

                          I hope and pray all goes better for your wife and that rehab helps a lot. You've also been blessed with an astounding support system, the likes of which I've never heard of!

                          Please keep us updated of what happens in the future.  Praying for you, friend.

                          Lord, in Your abundant mercy, hold and bless Nick and his wife in this time and through it.  Thank you for those people You've put in place for them. Guide her rehab process and keep hope alive for them. And thank you for the blessing of the love they share. In Your mercy, bless. Amen.

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                          Carol Taylor
                          Participant

                            Nick,

                            You sound like an amazing husband & care-giver and your wife sounds like an amazing and encouraging-beyond-words woman and fighter! I can only imagine your pain but you've got a wonderful attitude and I admire you & your beloved greatly! 

                            I hope and pray all goes better for your wife and that rehab helps a lot. You've also been blessed with an astounding support system, the likes of which I've never heard of!

                            Please keep us updated of what happens in the future.  Praying for you, friend.

                            Lord, in Your abundant mercy, hold and bless Nick and his wife in this time and through it.  Thank you for those people You've put in place for them. Guide her rehab process and keep hope alive for them. And thank you for the blessing of the love they share. In Your mercy, bless. Amen.

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                            ValinMtl
                            Participant

                              Good grief Nick, this monster certainly does challenge us.  Thank goodness that you have such a wonderful positive wife who is determined to fight it with all her strength and a strong support system.  Take care, the both of you are in my prayers tonight, sending positive vibes.  Val xx

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                              ValinMtl
                              Participant

                                Good grief Nick, this monster certainly does challenge us.  Thank goodness that you have such a wonderful positive wife who is determined to fight it with all her strength and a strong support system.  Take care, the both of you are in my prayers tonight, sending positive vibes.  Val xx

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                                chrisS
                                Participant
                                  I always found the hardest part was seeing the one you love in pain or depressed. Please take advantage of every day, even in the hospital. You can’t get them back. I wish I could have one more day in the hospital to hear my wife’s laugh. I know its tough. Hang in there.

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                                  chrisS
                                  Participant
                                    I always found the hardest part was seeing the one you love in pain or depressed. Please take advantage of every day, even in the hospital. You can’t get them back. I wish I could have one more day in the hospital to hear my wife’s laugh. I know its tough. Hang in there.

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