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Dad’s diagnosis

Forums General Melanoma Community Dad’s diagnosis

  • Post
    lalbers
    Participant

    I'm new here to this forum, and hopefully can have someone to lean on.  Dad had skin melanoma 5 years ago- had surgery, clean margins, sentinal lymph node biopsies- everything clean.  Pet/MRI/ oncologist every year.  A few months ago, dad developed respiratory problems, diagnosed with seasonal allergies.  Wrong.  Chest x-ray showed several large tumors by his heart and lungs.  Biopsy confirmed.  It's back.  He lives several states away.  They want to sell their house and move closer to me and hubs, but with the market the way it is, they

    I'm new here to this forum, and hopefully can have someone to lean on.  Dad had skin melanoma 5 years ago- had surgery, clean margins, sentinal lymph node biopsies- everything clean.  Pet/MRI/ oncologist every year.  A few months ago, dad developed respiratory problems, diagnosed with seasonal allergies.  Wrong.  Chest x-ray showed several large tumors by his heart and lungs.  Biopsy confirmed.  It's back.  He lives several states away.  They want to sell their house and move closer to me and hubs, but with the market the way it is, they can't sell, and can't move down here till it sells.  I'm a nurse, and know his prognosis, even though he tries to shield me and my brother from it- ie, they won't get copies of diagnostics, and read them to us, even though I know they have them- they say they don't.  They've already sold off some valuables they had so that mom can have enough money to move- but money really isn't an issue- she can live with us.  The thing that's killing me, is that as a nurse, I'm flexible in working, I've already told my work I may have to leave, and that's ok- I can get a travel position up there, and spend time with them- a few months, a few weeks……. Dad refuses to let me and my brother come up.  He says he wants to die there with mom, and we can come up after he's dead.  We've never been really close, although they did spend a summer, and several vacations with us in the last few years- and I talk to mom almost every day.  He's only opting for Temozolomide, even though he is eligible for severala clinical trials- but mom would have to drive him to them, and she can't drive that much.  I offered to come up there and drive them, and was turned down.  I hate this feeling so helpless…….

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  • Replies
      Fen
      Participant

      I am not a nurse, so you know so much more than I do about this, but we have lots of stage 4 people on the board.  Your parents might be in the initial "Holy cow this is bad" stage that occurs immediately after diagnosis.  I know it depends on the size and location, but can't lung mets be removed? Zapped?  What about IL-2?   It might be available closer than a clinical trial location.

       Can you get the reports from the dr? Will your parents let you see them if you go there?  Your dad might refuse to let you come up, but what about your mom?  She needs support now also. 

      I'm so sorry you're in this situation. Good luck and post updates when you can.

      Fen

       

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      Fen
      Participant

      I am not a nurse, so you know so much more than I do about this, but we have lots of stage 4 people on the board.  Your parents might be in the initial "Holy cow this is bad" stage that occurs immediately after diagnosis.  I know it depends on the size and location, but can't lung mets be removed? Zapped?  What about IL-2?   It might be available closer than a clinical trial location.

       Can you get the reports from the dr? Will your parents let you see them if you go there?  Your dad might refuse to let you come up, but what about your mom?  She needs support now also. 

      I'm so sorry you're in this situation. Good luck and post updates when you can.

      Fen

       

      .  

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      jag
      Participant

      Don't be afraid of your father, just go up and see them.  Either way it won't hurt.  You will get to spend time with them and you might even give him a chance.  Always best to start early in this sort of situation.  If you start now, then maybe 6 months from now, he will eventually consider a clinical trial.  Don't be confrontational.  Make it clear that you care about him, and want the best for him, and also explain his options so he understands that Temodar + a large tumor burden is like pissing in the wind-it will actually decrease his quality of life.   There are easier therapies, like the BRAF pill and IPI, which are non invasive and may require a few more trips to the doctor, but have fewer side effects (not necessarily true for IPI-but some people have strong reactions to Temodar as well).

       

      Best of Luck

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      jag
      Participant

      Don't be afraid of your father, just go up and see them.  Either way it won't hurt.  You will get to spend time with them and you might even give him a chance.  Always best to start early in this sort of situation.  If you start now, then maybe 6 months from now, he will eventually consider a clinical trial.  Don't be confrontational.  Make it clear that you care about him, and want the best for him, and also explain his options so he understands that Temodar + a large tumor burden is like pissing in the wind-it will actually decrease his quality of life.   There are easier therapies, like the BRAF pill and IPI, which are non invasive and may require a few more trips to the doctor, but have fewer side effects (not necessarily true for IPI-but some people have strong reactions to Temodar as well).

       

      Best of Luck

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      JuleFL
      Participant

      You are a nurse, but you are also a daughter and in spite of your father's words, he probably wants to see you.  And as another poster noted, you need to be there for your mother.  When you see them, start out as their daughter and your father might slowly come around.  He is in shock now and prone to saying things out of fear.  I wish you and your family comfort throughout your father's illness and pray that he finds the best path to health.

      Jule

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      JuleFL
      Participant

      You are a nurse, but you are also a daughter and in spite of your father's words, he probably wants to see you.  And as another poster noted, you need to be there for your mother.  When you see them, start out as their daughter and your father might slowly come around.  He is in shock now and prone to saying things out of fear.  I wish you and your family comfort throughout your father's illness and pray that he finds the best path to health.

      Jule

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      lalbers
      Participant

      There are some IPI trials as well as some vaccine trials as well as 3 pronged approaches, and bro and I have e-mailed him all the info about these- but dad is dad.  he states that he is comfortable with what his (one) oncologist is recommending, and it seems like he is just giving up, which is not dad.I know the Temador is just slowing the progression of the tumor….He knows this as well  He says he's already planned his funeral and made arrangements with the funeral home! This is killing me- I want him to fight! I want so much to be there for him- but being a nurse, I would try to run things, and do what I, as a medical professional would recommend for any patient- ……. I just can't see dad giving up, selling all the things they've collected over the years, and not wanting his children to be with him….. It hurts

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      lalbers
      Participant

      There are some IPI trials as well as some vaccine trials as well as 3 pronged approaches, and bro and I have e-mailed him all the info about these- but dad is dad.  he states that he is comfortable with what his (one) oncologist is recommending, and it seems like he is just giving up, which is not dad.I know the Temador is just slowing the progression of the tumor….He knows this as well  He says he's already planned his funeral and made arrangements with the funeral home! This is killing me- I want him to fight! I want so much to be there for him- but being a nurse, I would try to run things, and do what I, as a medical professional would recommend for any patient- ……. I just can't see dad giving up, selling all the things they've collected over the years, and not wanting his children to be with him….. It hurts

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      Cynthia C
      Participant

      A slightly different perspective: Maybe your father does not want his children to see him sick, or what he may perceive as weak. Maybe your father does not want his children (medical education or not) taking over and taking away from him the ability to make his own decisions. Although this affects the entire family this is his cancer and at this time he needs to have control of what he can control. Hopefully soon you all can come together as a family and have discussions but ultimately the bottom line is his. It's OK to plan and talk about funeral homes, selling off items no longer needed, pain, hospice, living wills and end of life issues. Now, can you introduce him to this website where he can see first hand the incredible stories of hope and Stage 4 survivors? That there are treatment options that could comfortably extend his life for many years to enjoy his wife and children? That you, especially with your education, can research treatments and be a strong advocate for him? Can you support his decisions even if you disagree? I would go visit and tell him just that. Don't bring out the folders full of trials and treatments until he asks for them. Start with unconditional love, support, understanding and respect and you may find him open to your suggestions. Don't forget you need your own support. My thoughts and prayers are with you.

      Cynthia C from Colorado

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      Cynthia C
      Participant

      A slightly different perspective: Maybe your father does not want his children to see him sick, or what he may perceive as weak. Maybe your father does not want his children (medical education or not) taking over and taking away from him the ability to make his own decisions. Although this affects the entire family this is his cancer and at this time he needs to have control of what he can control. Hopefully soon you all can come together as a family and have discussions but ultimately the bottom line is his. It's OK to plan and talk about funeral homes, selling off items no longer needed, pain, hospice, living wills and end of life issues. Now, can you introduce him to this website where he can see first hand the incredible stories of hope and Stage 4 survivors? That there are treatment options that could comfortably extend his life for many years to enjoy his wife and children? That you, especially with your education, can research treatments and be a strong advocate for him? Can you support his decisions even if you disagree? I would go visit and tell him just that. Don't bring out the folders full of trials and treatments until he asks for them. Start with unconditional love, support, understanding and respect and you may find him open to your suggestions. Don't forget you need your own support. My thoughts and prayers are with you.

      Cynthia C from Colorado

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        Cynthia C
        Participant

        I forgot to mention how fortunate he is to have a daughter like you.

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        Cynthia C
        Participant

        I forgot to mention how fortunate he is to have a daughter like you.

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