First PD1 evalutation – all lesions have shrunk!
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First PD1 evalutation – all lesions have shrunk!

› Forums › General Melanoma Community › First PD1 evalutation – all lesions have shrunk!

  • Post
    • March 1, 2015 at 8:48 pm
    magnus31
    Participant

      Dear all,

      I haven't been very active in this forum but I do find a lot of support and inspiration in reading through threads in here. So thanks all and stay positive!

      After my initial IIIA diagnosis late 2012, I haven't really been blessed with good news. Lung mets were identified during summer of 2014 and I turned stage IV. After a non-responsive round of Yervoy with only mild side-effects, two brain mets were identified in December 2014. At that point I was put on Nivolumab/PD1 treatment as well as scheduled for gammaknife treatment in January 2014.

      The thought of my head being fixed and inserted into a machine scared me immensely. At times, even more than the brainmets! But the gammaknife treatment went much smoother than I had feared. The sound of the radio and the fact that I could communicate with nurses through a microphone calmed me down. The scheduled 43 minutes passed by really quickly.  Three days after I worked out again at the gym as usual and recommenced my weekly runs.

      Now. I had my first Nivolumab/PD1 evaluation last week. And finally some good news! All mets in lungs and brains had shrunk. Some even dramatically! For the first time since my diagnosis, I felt I finally had found some breathing space. Next evaluation is scheduled for April and I can only hope that the mets will have regressed even further by then.

      Since this good news, I have finally dared to look forward again. Planned a move, started pondering a future career move, investing in a house…

      But after few minutes of planning ahead, I find myself stopping and asking myself critical questions. Can I medically founded believe that PD1 will work for me in the longer term, just on the basis of a positive first evaluation? Is it reasonable to believe that this drug will keep me alive and kicking for years to come? Is me planning a long time ahead just fooling myself? Will I still be alive in six months? Dare I hope for six more years?

      I am enduring no side effects at all from Nivolumab/PD1. Thoughts and stories on the PD1 treatment are welcome. Long-term survivor stories would especially have made my day!

       

       

       

       

       

       

       

    Viewing 14 reply threads
    • Replies
        • March 1, 2015 at 9:21 pm
        Bubbles
        Participant

          That's great news, Magnus!!!  Durability of response remains a huge question mark that you and I and all the others taking these meds will have to prove as time goes on.  Data is gradually being accrued that shows many responders can maintain that response over time.  I had my first dose of Nivo in Dec of 2010.  My last was in June of 2013.  I remain NED.  I have been dealing with melanoma since 2003.  From that point forward, despite positive nodes, brain mets, lung mets, and even a tonsillar met, I decided to LIVE.  To do what I needed to do for my life, my family, my job, etc.  That included completing graduate school, job changes, travel.  It has not always been fun.  It has not always been easy.  But, I refuse to give melanoma my life, before it takes it.

          Here is a post going over the published results of my nivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html

          Here are some published survival curves for the adjuvant resected group of my trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/survival-graphs-for-my-adjuvant.html

          Here's my take on the study results…as a rattie…  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html

          So…LIVE.  Life comes with no guarantees, no matter who you are.  It is finite.  Enjoy, as much as you can….as long as you can.

          Yours, Celeste

          • March 1, 2015 at 9:21 pm
          Bubbles
          Participant

            That's great news, Magnus!!!  Durability of response remains a huge question mark that you and I and all the others taking these meds will have to prove as time goes on.  Data is gradually being accrued that shows many responders can maintain that response over time.  I had my first dose of Nivo in Dec of 2010.  My last was in June of 2013.  I remain NED.  I have been dealing with melanoma since 2003.  From that point forward, despite positive nodes, brain mets, lung mets, and even a tonsillar met, I decided to LIVE.  To do what I needed to do for my life, my family, my job, etc.  That included completing graduate school, job changes, travel.  It has not always been fun.  It has not always been easy.  But, I refuse to give melanoma my life, before it takes it.

            Here is a post going over the published results of my nivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html

            Here are some published survival curves for the adjuvant resected group of my trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/survival-graphs-for-my-adjuvant.html

            Here's my take on the study results…as a rattie…  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html

            So…LIVE.  Life comes with no guarantees, no matter who you are.  It is finite.  Enjoy, as much as you can….as long as you can.

            Yours, Celeste

              • March 2, 2015 at 9:58 pm
              magnus31
              Participant

                Celeste,

                Thank you for such encouraging words! I am very happy this drug seems to be stabilizing your lesions. I pray for this to be my case as well.

                I think in the end, there is no other choice but choosing to live and to plan ahead. There are so much I would like to do, see, experience, but there is no way of saying for how long I will be around. But this should sound familiar to everyone, also those leading life without cancer.

                I am happy to read that you manage to prioritize your life and that your refuse to let melanome take it. 

                 

                Best,

                Magnus

                 

                 

                • March 2, 2015 at 9:58 pm
                magnus31
                Participant

                  Celeste,

                  Thank you for such encouraging words! I am very happy this drug seems to be stabilizing your lesions. I pray for this to be my case as well.

                  I think in the end, there is no other choice but choosing to live and to plan ahead. There are so much I would like to do, see, experience, but there is no way of saying for how long I will be around. But this should sound familiar to everyone, also those leading life without cancer.

                  I am happy to read that you manage to prioritize your life and that your refuse to let melanome take it. 

                   

                  Best,

                  Magnus

                   

                   

                  • March 2, 2015 at 9:58 pm
                  magnus31
                  Participant

                    Celeste,

                    Thank you for such encouraging words! I am very happy this drug seems to be stabilizing your lesions. I pray for this to be my case as well.

                    I think in the end, there is no other choice but choosing to live and to plan ahead. There are so much I would like to do, see, experience, but there is no way of saying for how long I will be around. But this should sound familiar to everyone, also those leading life without cancer.

                    I am happy to read that you manage to prioritize your life and that your refuse to let melanome take it. 

                     

                    Best,

                    Magnus

                     

                     

                  • March 1, 2015 at 9:21 pm
                  Bubbles
                  Participant

                    That's great news, Magnus!!!  Durability of response remains a huge question mark that you and I and all the others taking these meds will have to prove as time goes on.  Data is gradually being accrued that shows many responders can maintain that response over time.  I had my first dose of Nivo in Dec of 2010.  My last was in June of 2013.  I remain NED.  I have been dealing with melanoma since 2003.  From that point forward, despite positive nodes, brain mets, lung mets, and even a tonsillar met, I decided to LIVE.  To do what I needed to do for my life, my family, my job, etc.  That included completing graduate school, job changes, travel.  It has not always been fun.  It has not always been easy.  But, I refuse to give melanoma my life, before it takes it.

                    Here is a post going over the published results of my nivo trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html

                    Here are some published survival curves for the adjuvant resected group of my trial:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/survival-graphs-for-my-adjuvant.html

                    Here's my take on the study results…as a rattie…  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/my-nivo-opdivo-trial-first-dose-4-years.html

                    So…LIVE.  Life comes with no guarantees, no matter who you are.  It is finite.  Enjoy, as much as you can….as long as you can.

                    Yours, Celeste

                    • March 2, 2015 at 9:27 am
                    Jubes
                    Participant

                      HI Magnus,

                      So glad about your good news!! Yes, no reason that you can't plan for the future, but isn't it wonderful to be alive right now! I felt exactly the same way about planning ahead, it feels good that my family is taking me for granted again now 🙂

                      I am really interested if you or anyone else has had any adverse reactions to the Nivo/Pd1 trial. My neighbour is on that trial (diagnosed stage 4 in december) and had his first infusion two weeks ago. Today he is really unwell with fever and generally not feeling well. I didnt think fever was one of the usual side effects of the drugs. 

                      I am on pembrolizumab (Keytruda), which I believe has less severe side effects than the combo of Ipi/Nivo, so I feel a bit helpless.

                      I would love to give my neighbour some feedback, though he could be suffering some unrelated illness.

                      Thanks

                      Anne-louise

                      • March 2, 2015 at 9:27 am
                      Jubes
                      Participant

                        HI Magnus,

                        So glad about your good news!! Yes, no reason that you can't plan for the future, but isn't it wonderful to be alive right now! I felt exactly the same way about planning ahead, it feels good that my family is taking me for granted again now 🙂

                        I am really interested if you or anyone else has had any adverse reactions to the Nivo/Pd1 trial. My neighbour is on that trial (diagnosed stage 4 in december) and had his first infusion two weeks ago. Today he is really unwell with fever and generally not feeling well. I didnt think fever was one of the usual side effects of the drugs. 

                        I am on pembrolizumab (Keytruda), which I believe has less severe side effects than the combo of Ipi/Nivo, so I feel a bit helpless.

                        I would love to give my neighbour some feedback, though he could be suffering some unrelated illness.

                        Thanks

                        Anne-louise

                          • March 2, 2015 at 9:22 pm
                          magnus31
                          Participant

                            Hi Anne-Louise,

                            Thank you for your message and your kind thoughts.

                            I am so happy to hear that you seem to be responding well to the Pembrolizumab treatment (which I to be honest don't know too much about since it has never been an option to me – yet).

                            I did four dosis of Yervoy. After concluding it did not have any effect on me in December, I jumped directly to Nivolumab (PD1). So I technically never took these two drugs in paralell, although my doctors say that they must have worked jointly since Nivo was still in my body when first dosis of Nivolumab was administered.

                            I did not present any side effects of Yervoy at all. And after five dosis of Nivolumab, I am happy to say I have no negative side-effects of this drug either. I have certainly not experienced any kind of fever, like your neighbour.

                            The only side-effect I am experiencing from Nivolumab is mild avitiligo which doctors say happen to some patients. In other words, my beard has lost its pigment and now has grey patches. But I can't really complain, I have concluded it has added to my face a new, handsome touch! 🙂

                            Again, I did not take this two drugs as a combination and will leave for others who have actually undergone this treatment to comment.

                            I wish you and your neighbour great response to ongoing medication!

                            All the best from France.

                             

                            • March 2, 2015 at 9:22 pm
                            magnus31
                            Participant

                              Hi Anne-Louise,

                              Thank you for your message and your kind thoughts.

                              I am so happy to hear that you seem to be responding well to the Pembrolizumab treatment (which I to be honest don't know too much about since it has never been an option to me – yet).

                              I did four dosis of Yervoy. After concluding it did not have any effect on me in December, I jumped directly to Nivolumab (PD1). So I technically never took these two drugs in paralell, although my doctors say that they must have worked jointly since Nivo was still in my body when first dosis of Nivolumab was administered.

                              I did not present any side effects of Yervoy at all. And after five dosis of Nivolumab, I am happy to say I have no negative side-effects of this drug either. I have certainly not experienced any kind of fever, like your neighbour.

                              The only side-effect I am experiencing from Nivolumab is mild avitiligo which doctors say happen to some patients. In other words, my beard has lost its pigment and now has grey patches. But I can't really complain, I have concluded it has added to my face a new, handsome touch! 🙂

                              Again, I did not take this two drugs as a combination and will leave for others who have actually undergone this treatment to comment.

                              I wish you and your neighbour great response to ongoing medication!

                              All the best from France.

                               

                              • March 3, 2015 at 6:00 am
                              Jubes
                              Participant

                                Thanks Magnus. My neighbour is stil ill and has bad headaches as well. Our dr does not think it is drug related but that is a pretty big co incidence. I have had a few headaches myself but not bad enough to take pain killers for. I heard the vitiligo is a sign that the drug is working well, so go you!!!

                                My side effects have not been too bad but I do get aching joints and an annoying itchy rash, first from Yervoy and now also from Keytruda but i think worse from Keytruda. I am still able to live my life just fine, so grateful for that. 

                                Keep up the good results

                                Anne-louise

                                • March 3, 2015 at 6:00 am
                                Jubes
                                Participant

                                  Thanks Magnus. My neighbour is stil ill and has bad headaches as well. Our dr does not think it is drug related but that is a pretty big co incidence. I have had a few headaches myself but not bad enough to take pain killers for. I heard the vitiligo is a sign that the drug is working well, so go you!!!

                                  My side effects have not been too bad but I do get aching joints and an annoying itchy rash, first from Yervoy and now also from Keytruda but i think worse from Keytruda. I am still able to live my life just fine, so grateful for that. 

                                  Keep up the good results

                                  Anne-louise

                                  • March 3, 2015 at 6:00 am
                                  Jubes
                                  Participant

                                    Thanks Magnus. My neighbour is stil ill and has bad headaches as well. Our dr does not think it is drug related but that is a pretty big co incidence. I have had a few headaches myself but not bad enough to take pain killers for. I heard the vitiligo is a sign that the drug is working well, so go you!!!

                                    My side effects have not been too bad but I do get aching joints and an annoying itchy rash, first from Yervoy and now also from Keytruda but i think worse from Keytruda. I am still able to live my life just fine, so grateful for that. 

                                    Keep up the good results

                                    Anne-louise

                                    • March 2, 2015 at 9:22 pm
                                    magnus31
                                    Participant

                                      Hi Anne-Louise,

                                      Thank you for your message and your kind thoughts.

                                      I am so happy to hear that you seem to be responding well to the Pembrolizumab treatment (which I to be honest don't know too much about since it has never been an option to me – yet).

                                      I did four dosis of Yervoy. After concluding it did not have any effect on me in December, I jumped directly to Nivolumab (PD1). So I technically never took these two drugs in paralell, although my doctors say that they must have worked jointly since Nivo was still in my body when first dosis of Nivolumab was administered.

                                      I did not present any side effects of Yervoy at all. And after five dosis of Nivolumab, I am happy to say I have no negative side-effects of this drug either. I have certainly not experienced any kind of fever, like your neighbour.

                                      The only side-effect I am experiencing from Nivolumab is mild avitiligo which doctors say happen to some patients. In other words, my beard has lost its pigment and now has grey patches. But I can't really complain, I have concluded it has added to my face a new, handsome touch! 🙂

                                      Again, I did not take this two drugs as a combination and will leave for others who have actually undergone this treatment to comment.

                                      I wish you and your neighbour great response to ongoing medication!

                                      All the best from France.

                                       

                                    • March 2, 2015 at 9:27 am
                                    Jubes
                                    Participant

                                      HI Magnus,

                                      So glad about your good news!! Yes, no reason that you can't plan for the future, but isn't it wonderful to be alive right now! I felt exactly the same way about planning ahead, it feels good that my family is taking me for granted again now 🙂

                                      I am really interested if you or anyone else has had any adverse reactions to the Nivo/Pd1 trial. My neighbour is on that trial (diagnosed stage 4 in december) and had his first infusion two weeks ago. Today he is really unwell with fever and generally not feeling well. I didnt think fever was one of the usual side effects of the drugs. 

                                      I am on pembrolizumab (Keytruda), which I believe has less severe side effects than the combo of Ipi/Nivo, so I feel a bit helpless.

                                      I would love to give my neighbour some feedback, though he could be suffering some unrelated illness.

                                      Thanks

                                      Anne-louise

                                      • March 2, 2015 at 4:28 pm
                                      arthurjedi007
                                      Participant

                                        That is awesome. I get dose 15 next week and last scan in early November showed some were still having minor growth. First scan in August was more specific showing 7 growing, 4 staying same and 19 shrinking. I've had lots of radiation so won't get another scan for a few more weeks but for some reason I feel like my tumors are shrinking.

                                        So all shrinking is awesome. That is wonderful for you.

                                        Artie

                                        • March 2, 2015 at 4:28 pm
                                        arthurjedi007
                                        Participant

                                          That is awesome. I get dose 15 next week and last scan in early November showed some were still having minor growth. First scan in August was more specific showing 7 growing, 4 staying same and 19 shrinking. I've had lots of radiation so won't get another scan for a few more weeks but for some reason I feel like my tumors are shrinking.

                                          So all shrinking is awesome. That is wonderful for you.

                                          Artie

                                            • March 2, 2015 at 9:34 pm
                                            magnus31
                                            Participant

                                              Hello Artie,

                                              I read your medical resume. I am so happy to hear that most of your lesions are shrinking. And 19 lesions in shrinking seems considerable to a melanoma lay-man like myself. I would trust that gut feeling of yours!

                                              Good luck on your scans a few weeks down the road.

                                              Best,

                                              Magnus

                                              • March 2, 2015 at 9:34 pm
                                              magnus31
                                              Participant

                                                Hello Artie,

                                                I read your medical resume. I am so happy to hear that most of your lesions are shrinking. And 19 lesions in shrinking seems considerable to a melanoma lay-man like myself. I would trust that gut feeling of yours!

                                                Good luck on your scans a few weeks down the road.

                                                Best,

                                                Magnus

                                                • March 2, 2015 at 9:34 pm
                                                magnus31
                                                Participant

                                                  Hello Artie,

                                                  I read your medical resume. I am so happy to hear that most of your lesions are shrinking. And 19 lesions in shrinking seems considerable to a melanoma lay-man like myself. I would trust that gut feeling of yours!

                                                  Good luck on your scans a few weeks down the road.

                                                  Best,

                                                  Magnus

                                                • March 2, 2015 at 4:28 pm
                                                arthurjedi007
                                                Participant

                                                  That is awesome. I get dose 15 next week and last scan in early November showed some were still having minor growth. First scan in August was more specific showing 7 growing, 4 staying same and 19 shrinking. I've had lots of radiation so won't get another scan for a few more weeks but for some reason I feel like my tumors are shrinking.

                                                  So all shrinking is awesome. That is wonderful for you.

                                                  Artie

                                                  • March 2, 2015 at 6:24 pm
                                                  sweetaugust
                                                  Participant

                                                    Hi Magnus,

                                                    When I was first diagnosed as stage 4 almost 2 and a half years ago, I too wondered those same thoughts….how do I plan for a future that we aren't sure will be there.  But I now just live my life happy for today and feeling like I do really have a chance at a future. 

                                                    I have been on the Keytruda PD1 since Oct 2012.  Still going strong almost 2.5 years later…and still on the trial with no end date planned.  Living quite a normal life and working full time.   Feeling great.  I did change my diet around quite a bit right when I started the trial….just to give my body the best foods I could to help it in it's fight…because back then, we didn't know if this drug was going to work.  And since I am doing so well…I am sticking with the healthy diet and keeping up all the good things to keep helping my body.

                                                    All my best to you, Laurie

                                                     

                                                    • March 2, 2015 at 6:24 pm
                                                    sweetaugust
                                                    Participant

                                                      Hi Magnus,

                                                      When I was first diagnosed as stage 4 almost 2 and a half years ago, I too wondered those same thoughts….how do I plan for a future that we aren't sure will be there.  But I now just live my life happy for today and feeling like I do really have a chance at a future. 

                                                      I have been on the Keytruda PD1 since Oct 2012.  Still going strong almost 2.5 years later…and still on the trial with no end date planned.  Living quite a normal life and working full time.   Feeling great.  I did change my diet around quite a bit right when I started the trial….just to give my body the best foods I could to help it in it's fight…because back then, we didn't know if this drug was going to work.  And since I am doing so well…I am sticking with the healthy diet and keeping up all the good things to keep helping my body.

                                                      All my best to you, Laurie

                                                       

                                                        • March 2, 2015 at 9:29 pm
                                                        magnus31
                                                        Participant

                                                          Hi Laurie,

                                                          Thanks for your message. It is really encouraging to hear from other PD1 patients with good response!

                                                          It is fantastic that you are responding so well to your medication. And I imagine you feel similar to how I feel on working – that working full hours and living a "normal life" probably makes the disease easier to handle somehow.

                                                          As for planning ahead… I don't really think I have much choice but planning ahead as I would otherwise. I would hate to find myself healthy in 5 years down the road but regretful about the things I didn't dare do in fear of the illness.

                                                          Keep up the good work. And good luck on next scans!

                                                          Magnus

                                                          • March 2, 2015 at 9:29 pm
                                                          magnus31
                                                          Participant

                                                            Hi Laurie,

                                                            Thanks for your message. It is really encouraging to hear from other PD1 patients with good response!

                                                            It is fantastic that you are responding so well to your medication. And I imagine you feel similar to how I feel on working – that working full hours and living a "normal life" probably makes the disease easier to handle somehow.

                                                            As for planning ahead… I don't really think I have much choice but planning ahead as I would otherwise. I would hate to find myself healthy in 5 years down the road but regretful about the things I didn't dare do in fear of the illness.

                                                            Keep up the good work. And good luck on next scans!

                                                            Magnus

                                                            • March 2, 2015 at 9:29 pm
                                                            magnus31
                                                            Participant

                                                              Hi Laurie,

                                                              Thanks for your message. It is really encouraging to hear from other PD1 patients with good response!

                                                              It is fantastic that you are responding so well to your medication. And I imagine you feel similar to how I feel on working – that working full hours and living a "normal life" probably makes the disease easier to handle somehow.

                                                              As for planning ahead… I don't really think I have much choice but planning ahead as I would otherwise. I would hate to find myself healthy in 5 years down the road but regretful about the things I didn't dare do in fear of the illness.

                                                              Keep up the good work. And good luck on next scans!

                                                              Magnus

                                                            • March 2, 2015 at 6:24 pm
                                                            sweetaugust
                                                            Participant

                                                              Hi Magnus,

                                                              When I was first diagnosed as stage 4 almost 2 and a half years ago, I too wondered those same thoughts….how do I plan for a future that we aren't sure will be there.  But I now just live my life happy for today and feeling like I do really have a chance at a future. 

                                                              I have been on the Keytruda PD1 since Oct 2012.  Still going strong almost 2.5 years later…and still on the trial with no end date planned.  Living quite a normal life and working full time.   Feeling great.  I did change my diet around quite a bit right when I started the trial….just to give my body the best foods I could to help it in it's fight…because back then, we didn't know if this drug was going to work.  And since I am doing so well…I am sticking with the healthy diet and keeping up all the good things to keep helping my body.

                                                              All my best to you, Laurie

                                                               

                                                              • March 3, 2015 at 1:58 pm
                                                              _Paul_
                                                              Participant

                                                                Hi Magnus,

                                                                That is fantastic news about your shrinking mets!

                                                                I totally get what you mean about thinking about the future. The whole melanoma game changed in the last couple of years and it is no longer a death sentence. Not a cure of course, but I don't think the old conventional outlook of one year or less to live still applies.

                                                                When I first got diagnosed at Stage 4, I pretty much thought that I was doomed, and immediately took a leave of absence from work. But after being away for a few weeks and talking to some insightful people I came to the conclusion that I wanted to continue working, since that made my life more normal, and normal felt good compared to the chaos of letting my thoughts dwell in my disease.

                                                                But not completely normal! When I was going through the paperwork with my Human Resources representative from work for short term leave I noticed a little box labelled "accelerated death benefit". It turned out that having a qualifying terminal disease (and Stage 4 cancer qualifies) entitled me to receive half my life insurance benefit up front while still alive. And better yet, if I don't die I still get to keep it. Now normally I am fairly conservative and my initial reaction to a windfall like that would be to pay down debt and invest. But this time I took half of it and used it to buy my dream car – a Tesla! The way I look at it is if I do die I will be going out in style and if I don't then I get to enjoy an unexpected benefit of having late stage cancer.

                                                                Take care – Paul.

                                                                • March 3, 2015 at 1:58 pm
                                                                _Paul_
                                                                Participant

                                                                  Hi Magnus,

                                                                  That is fantastic news about your shrinking mets!

                                                                  I totally get what you mean about thinking about the future. The whole melanoma game changed in the last couple of years and it is no longer a death sentence. Not a cure of course, but I don't think the old conventional outlook of one year or less to live still applies.

                                                                  When I first got diagnosed at Stage 4, I pretty much thought that I was doomed, and immediately took a leave of absence from work. But after being away for a few weeks and talking to some insightful people I came to the conclusion that I wanted to continue working, since that made my life more normal, and normal felt good compared to the chaos of letting my thoughts dwell in my disease.

                                                                  But not completely normal! When I was going through the paperwork with my Human Resources representative from work for short term leave I noticed a little box labelled "accelerated death benefit". It turned out that having a qualifying terminal disease (and Stage 4 cancer qualifies) entitled me to receive half my life insurance benefit up front while still alive. And better yet, if I don't die I still get to keep it. Now normally I am fairly conservative and my initial reaction to a windfall like that would be to pay down debt and invest. But this time I took half of it and used it to buy my dream car – a Tesla! The way I look at it is if I do die I will be going out in style and if I don't then I get to enjoy an unexpected benefit of having late stage cancer.

                                                                  Take care – Paul.

                                                                  • March 3, 2015 at 1:58 pm
                                                                  _Paul_
                                                                  Participant

                                                                    Hi Magnus,

                                                                    That is fantastic news about your shrinking mets!

                                                                    I totally get what you mean about thinking about the future. The whole melanoma game changed in the last couple of years and it is no longer a death sentence. Not a cure of course, but I don't think the old conventional outlook of one year or less to live still applies.

                                                                    When I first got diagnosed at Stage 4, I pretty much thought that I was doomed, and immediately took a leave of absence from work. But after being away for a few weeks and talking to some insightful people I came to the conclusion that I wanted to continue working, since that made my life more normal, and normal felt good compared to the chaos of letting my thoughts dwell in my disease.

                                                                    But not completely normal! When I was going through the paperwork with my Human Resources representative from work for short term leave I noticed a little box labelled "accelerated death benefit". It turned out that having a qualifying terminal disease (and Stage 4 cancer qualifies) entitled me to receive half my life insurance benefit up front while still alive. And better yet, if I don't die I still get to keep it. Now normally I am fairly conservative and my initial reaction to a windfall like that would be to pay down debt and invest. But this time I took half of it and used it to buy my dream car – a Tesla! The way I look at it is if I do die I will be going out in style and if I don't then I get to enjoy an unexpected benefit of having late stage cancer.

                                                                    Take care – Paul.

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