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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

      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

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