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spreading melanoma

Forums General Melanoma Community spreading melanoma

  • Post
    lmhl
    Participant

      My husband passed away one year ago from melanoma-nodular-first noted midline on the bridge of his nose.  He had surgery, radiation for 6 weeks, the mandatory one dose of dacarbazine before he started ipi.  He completed 3 doses of ipi before he had a seizure and intracranial bleed (at that time we discovered the melanoma spread to his brain).  They stoped the ipi and did WBR.  He died 4 weeks later.  

      My question-after he stopped the ipi, the melanoma could be seen rapidly superficially  spreading over his upper body (chest, shoulders, neck).  It changed daily to the point where it was mostly covered.  I have still been trying to make sense of this disease and can not find any information about this rapidly spreading melanoma.  Was it because the ipi was stopped?  Was it just an agressive melanoma?

      The doctors waited 7 months before starting systemic treatment.  Would it have made a difference if he was treated sooner?

      Thank you for your help.  There is so much knowledge shared on this forum.  I only wish I had found it sooner.

       

    Viewing 11 reply threads
    • Replies
        lmhl
        Participant

          No one has any idea what this quickly spreading superficial melanoma is?  I can't find any references to it.  Nor have I heard anyone talk about it.

          lmhl
          Participant

            No one has any idea what this quickly spreading superficial melanoma is?  I can't find any references to it.  Nor have I heard anyone talk about it.

            lmhl
            Participant

              No one has any idea what this quickly spreading superficial melanoma is?  I can't find any references to it.  Nor have I heard anyone talk about it.

              jennunicorn
              Participant

                I am so sorry to hear about your husband. I can only imagine the many questions that come to mind. Unfortunately, I don't know if there is a real answer to your question. Melanoma affects everyone differently and does not like to "play by the rules". I wish there were concrete answers for you. Most likely he just was not a responder to ipi and he did not have time to try something else. My heart goes out to you and I hope as science and research grows through the years there may be better answers for you in the future.

                All the best,

                Jenn

                jennunicorn
                Participant

                  I am so sorry to hear about your husband. I can only imagine the many questions that come to mind. Unfortunately, I don't know if there is a real answer to your question. Melanoma affects everyone differently and does not like to "play by the rules". I wish there were concrete answers for you. Most likely he just was not a responder to ipi and he did not have time to try something else. My heart goes out to you and I hope as science and research grows through the years there may be better answers for you in the future.

                  All the best,

                  Jenn

                  jennunicorn
                  Participant

                    I am so sorry to hear about your husband. I can only imagine the many questions that come to mind. Unfortunately, I don't know if there is a real answer to your question. Melanoma affects everyone differently and does not like to "play by the rules". I wish there were concrete answers for you. Most likely he just was not a responder to ipi and he did not have time to try something else. My heart goes out to you and I hope as science and research grows through the years there may be better answers for you in the future.

                    All the best,

                    Jenn

                    WithinMySkin
                    Participant

                      I'm so sorry for your loss. I'm sure you have been in a lot of pain for the past year, and I can only say I'm terribly sorry. I know you want answers – but unfortunately, I have none to give. What you ask is more of the deep thinking human questions of "why" and "what if", and no one has those answers. We can drive ourselves crazy looking for answers but nature will never give you her secrets.

                      The only advice I can give you is to not let the causes of your husband's death rule your thoughts – instead, live your life with the lessons his has provided for you. I know this is not what you want to hear, as you want solid, palpable answers. And I apologize for not providing them. But know that we are all here to support you emotionally as you heal. 

                      WithinMySkin
                      Participant

                        I'm so sorry for your loss. I'm sure you have been in a lot of pain for the past year, and I can only say I'm terribly sorry. I know you want answers – but unfortunately, I have none to give. What you ask is more of the deep thinking human questions of "why" and "what if", and no one has those answers. We can drive ourselves crazy looking for answers but nature will never give you her secrets.

                        The only advice I can give you is to not let the causes of your husband's death rule your thoughts – instead, live your life with the lessons his has provided for you. I know this is not what you want to hear, as you want solid, palpable answers. And I apologize for not providing them. But know that we are all here to support you emotionally as you heal. 

                        WithinMySkin
                        Participant

                          I'm so sorry for your loss. I'm sure you have been in a lot of pain for the past year, and I can only say I'm terribly sorry. I know you want answers – but unfortunately, I have none to give. What you ask is more of the deep thinking human questions of "why" and "what if", and no one has those answers. We can drive ourselves crazy looking for answers but nature will never give you her secrets.

                          The only advice I can give you is to not let the causes of your husband's death rule your thoughts – instead, live your life with the lessons his has provided for you. I know this is not what you want to hear, as you want solid, palpable answers. And I apologize for not providing them. But know that we are all here to support you emotionally as you heal. 

                          CHD
                          Participant

                            Hi lmhl, I am so sorry about the loss of your husband.  There are just no words.  I have a rare form of mucosal melanoma and lost my good friend with the same disease in October.  Three years ago, we were diagnosed within several months of each other but hers was extraordinarily aggressive, and mine has not been.  I am told melanoma varies in aggressiveness and it is considered "tricky" and hard to treat for many reasons, only one of which is its unpredictability.  It may be impossible to say whether or not your husband might have done better had treatment been started earlier.  It is possible that no one knew quite what to expect.  It is also hard to say what might have happened had he been able to continue on with the ipi.  Your questions are ones I would be asking too, but I am beginning to think maybe it is only in hindsight that we can look back and consider all the things we might have done differently with this terrible, unpredictable disease, and it seems like with each of us, the progression, when it occurs, can be so different and, again, so unpredictable.  I am so sorry for your loss.

                            Cheri

                              lmhl
                              Participant

                                Thank you everyone for your reponses.  I have never heard anyone speak about how quickly melanoma can spread. Wishing you all the best.

                                lmhl
                                Participant

                                  Thank you everyone for your reponses.  I have never heard anyone speak about how quickly melanoma can spread. Wishing you all the best.

                                  lmhl
                                  Participant

                                    Thank you everyone for your reponses.  I have never heard anyone speak about how quickly melanoma can spread. Wishing you all the best.

                                  CHD
                                  Participant

                                    Hi lmhl, I am so sorry about the loss of your husband.  There are just no words.  I have a rare form of mucosal melanoma and lost my good friend with the same disease in October.  Three years ago, we were diagnosed within several months of each other but hers was extraordinarily aggressive, and mine has not been.  I am told melanoma varies in aggressiveness and it is considered "tricky" and hard to treat for many reasons, only one of which is its unpredictability.  It may be impossible to say whether or not your husband might have done better had treatment been started earlier.  It is possible that no one knew quite what to expect.  It is also hard to say what might have happened had he been able to continue on with the ipi.  Your questions are ones I would be asking too, but I am beginning to think maybe it is only in hindsight that we can look back and consider all the things we might have done differently with this terrible, unpredictable disease, and it seems like with each of us, the progression, when it occurs, can be so different and, again, so unpredictable.  I am so sorry for your loss.

                                    Cheri

                                    CHD
                                    Participant

                                      Hi lmhl, I am so sorry about the loss of your husband.  There are just no words.  I have a rare form of mucosal melanoma and lost my good friend with the same disease in October.  Three years ago, we were diagnosed within several months of each other but hers was extraordinarily aggressive, and mine has not been.  I am told melanoma varies in aggressiveness and it is considered "tricky" and hard to treat for many reasons, only one of which is its unpredictability.  It may be impossible to say whether or not your husband might have done better had treatment been started earlier.  It is possible that no one knew quite what to expect.  It is also hard to say what might have happened had he been able to continue on with the ipi.  Your questions are ones I would be asking too, but I am beginning to think maybe it is only in hindsight that we can look back and consider all the things we might have done differently with this terrible, unpredictable disease, and it seems like with each of us, the progression, when it occurs, can be so different and, again, so unpredictable.  I am so sorry for your loss.

                                      Cheri

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