My husband has metastatic melanoma
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My husband has metastatic melanoma

› Forums › Cutaneous Melanoma Community › My husband has metastatic melanoma

  • Post
    • May 8, 2014 at 6:26 pm
    virginia washburn
    Participant

    What a road this has been. My husband has metastatic melanoma (lung, brain, subcutaneous). He has done 2 rounds of Ipi, had Gamma Knife x 3, and just completed whole brain radiation. (He had "at least" 28 brain tumors on his last MRI)

    He has an appt. next week to discuss possible Anti PD-1 therapy. He will have to wait a minimum of 30 days, generally recommended 8 weeks for MRI to see if his brain tumors have recurred. So, for now, we are in "Limbo", the so called gray area. We know his prognosis is not good.

    I have asked the Cancer Center to refer my daughter and myself for counseling. I'm so numb, I don't feel anything. I HAVE to be strong for my husband and daughter. I know the gates will open eventually. The uncertainty is nerve wracking. This consumes me 24/7. I can't think of anything else, it is always looming in the back of my mind. I have no motivation, no energy, no desire to do anything. Many friends have reached out to me, but I just do not have the desire to do anything.

    Some friends have organized a benefit for our family this week end, and I know this will be very difficult.  It's so hard to beleive a year ago how optimistic the dr's. were and how well he was doing. He has recently lost 20 lbs, lost his hair (radiation), very pale. He has that "cancer" look. 

    I pray everyday for strength to keep going. I'm exhausted, but I think of my husband and what he is going through, and realize he is facing his own mortality. I can not even imagine what he is feeling.

Viewing 14 reply threads
  • Replies
      • May 8, 2014 at 6:34 pm
      DUSTILANE
      Participant

      Virginia, I can truly understand what you are going thru.  My husband also has mestatic melanoma, although not as bad as yours.  I don't know what I would do without the prayers of my family, church family, and friends.  I could not make it if it weren't for the strength that God gives me.

       

      But there are times when I have myself a pity party and just set down and cry. 

       

      I hope he gets to do the Anti PD-1 treatment soon. 

       

      I will keep you both in my prayers.

      • May 8, 2014 at 6:34 pm
      DUSTILANE
      Participant

      Virginia, I can truly understand what you are going thru.  My husband also has mestatic melanoma, although not as bad as yours.  I don't know what I would do without the prayers of my family, church family, and friends.  I could not make it if it weren't for the strength that God gives me.

       

      But there are times when I have myself a pity party and just set down and cry. 

       

      I hope he gets to do the Anti PD-1 treatment soon. 

       

      I will keep you both in my prayers.

        • May 8, 2014 at 6:40 pm
        virginia washburn
        Participant

        Thank you so much, and I will you and yours!

        I have had a couple of pity parties too. Sometimes I feel as if I'm going to explode, and it's all coming forward. But, I just can't see to let it all out.

        • May 8, 2014 at 6:40 pm
        virginia washburn
        Participant

        Thank you so much, and I will you and yours!

        I have had a couple of pity parties too. Sometimes I feel as if I'm going to explode, and it's all coming forward. But, I just can't see to let it all out.

        • May 8, 2014 at 6:40 pm
        virginia washburn
        Participant

        Thank you so much, and I will you and yours!

        I have had a couple of pity parties too. Sometimes I feel as if I'm going to explode, and it's all coming forward. But, I just can't see to let it all out.

      • May 8, 2014 at 6:34 pm
      DUSTILANE
      Participant

      Virginia, I can truly understand what you are going thru.  My husband also has mestatic melanoma, although not as bad as yours.  I don't know what I would do without the prayers of my family, church family, and friends.  I could not make it if it weren't for the strength that God gives me.

       

      But there are times when I have myself a pity party and just set down and cry. 

       

      I hope he gets to do the Anti PD-1 treatment soon. 

       

      I will keep you both in my prayers.

      • May 8, 2014 at 7:29 pm
      onestitchatatime
      Participant

      Oh, I am so sorry.  My husband and I are just starting this journey and he is so far Stage 1 and I'm thinking about it 24/7 as well.  I can only imagine how hard it is for you.  It is so scary.  I hope you will get counseling so you will have someone to talk with and a neutral person you can "let it all out" with.  Someone you feel you do not have to hold back with.  

      I haven't looked into it yet but my friends who are facing serious health situations with their loved ones really have benefited from support groups.  It seems to me that it would be good to be with others in the same place to feel less alone.

      • May 8, 2014 at 7:29 pm
      onestitchatatime
      Participant

      Oh, I am so sorry.  My husband and I are just starting this journey and he is so far Stage 1 and I'm thinking about it 24/7 as well.  I can only imagine how hard it is for you.  It is so scary.  I hope you will get counseling so you will have someone to talk with and a neutral person you can "let it all out" with.  Someone you feel you do not have to hold back with.  

      I haven't looked into it yet but my friends who are facing serious health situations with their loved ones really have benefited from support groups.  It seems to me that it would be good to be with others in the same place to feel less alone.

      • May 8, 2014 at 7:29 pm
      onestitchatatime
      Participant

      Oh, I am so sorry.  My husband and I are just starting this journey and he is so far Stage 1 and I'm thinking about it 24/7 as well.  I can only imagine how hard it is for you.  It is so scary.  I hope you will get counseling so you will have someone to talk with and a neutral person you can "let it all out" with.  Someone you feel you do not have to hold back with.  

      I haven't looked into it yet but my friends who are facing serious health situations with their loved ones really have benefited from support groups.  It seems to me that it would be good to be with others in the same place to feel less alone.

      • May 8, 2014 at 7:52 pm
      tcell
      Participant

      Virginia, I am sorry for what you are going through.

      My daughter is only 1.5 years old, I was diagnosed with stage IV 3 months ago.

      Sometime when my wife and I had time together in hospital I said to her that The only thing that is really positive that I can see at the moment is that it hit me, not her.

      You are right in saying that you cannot imagine to face your own mortality and how your husband feels. On the other hand The ones suffering from it cannot imagine what their loved ones are going through. I imagine it to be at least as tough to see your loved ones suffer as it is to suffer with somebody you love without being able to physically help!

      You maybe would not imagine that just being there with him and for him is all that is needed!

      Take care of yourself!

      Chris

      • May 8, 2014 at 7:52 pm
      tcell
      Participant

      Virginia, I am sorry for what you are going through.

      My daughter is only 1.5 years old, I was diagnosed with stage IV 3 months ago.

      Sometime when my wife and I had time together in hospital I said to her that The only thing that is really positive that I can see at the moment is that it hit me, not her.

      You are right in saying that you cannot imagine to face your own mortality and how your husband feels. On the other hand The ones suffering from it cannot imagine what their loved ones are going through. I imagine it to be at least as tough to see your loved ones suffer as it is to suffer with somebody you love without being able to physically help!

      You maybe would not imagine that just being there with him and for him is all that is needed!

      Take care of yourself!

      Chris

        • May 9, 2014 at 12:50 pm
        virginia washburn
        Participant

        Chris,

        I'm so sorry you are going through this. You are right, all I can do is "be there" for him. Even with all the mood swings, which is a lot right now, because of the radiation and high doses of steroids. I don't know what to expect or how he is going to be from one minute to the next. He can be very loving and caring, tearful, to a beast, mean and angry in a split second. 

        This is so hard on everyone. He says to me all the time how sorry he is that our daughter and I are having to go through this, "ya'll didn't sign up for this". But I tell hime when I said "I do", I did sign up for it. 

        All we can do is pray for everyone to have strength and courage to 'get through it", because that is what we are doing.

        I wish you all the best. Spend as much time with that sweet little girl, write letters, take a lot of pictures, be silly and LOVE her!

        Take care.

        Virginia

         

        • May 9, 2014 at 12:50 pm
        virginia washburn
        Participant

        Chris,

        I'm so sorry you are going through this. You are right, all I can do is "be there" for him. Even with all the mood swings, which is a lot right now, because of the radiation and high doses of steroids. I don't know what to expect or how he is going to be from one minute to the next. He can be very loving and caring, tearful, to a beast, mean and angry in a split second. 

        This is so hard on everyone. He says to me all the time how sorry he is that our daughter and I are having to go through this, "ya'll didn't sign up for this". But I tell hime when I said "I do", I did sign up for it. 

        All we can do is pray for everyone to have strength and courage to 'get through it", because that is what we are doing.

        I wish you all the best. Spend as much time with that sweet little girl, write letters, take a lot of pictures, be silly and LOVE her!

        Take care.

        Virginia

         

        • May 9, 2014 at 12:50 pm
        virginia washburn
        Participant

        Chris,

        I'm so sorry you are going through this. You are right, all I can do is "be there" for him. Even with all the mood swings, which is a lot right now, because of the radiation and high doses of steroids. I don't know what to expect or how he is going to be from one minute to the next. He can be very loving and caring, tearful, to a beast, mean and angry in a split second. 

        This is so hard on everyone. He says to me all the time how sorry he is that our daughter and I are having to go through this, "ya'll didn't sign up for this". But I tell hime when I said "I do", I did sign up for it. 

        All we can do is pray for everyone to have strength and courage to 'get through it", because that is what we are doing.

        I wish you all the best. Spend as much time with that sweet little girl, write letters, take a lot of pictures, be silly and LOVE her!

        Take care.

        Virginia

         

      • May 8, 2014 at 7:52 pm
      tcell
      Participant

      Virginia, I am sorry for what you are going through.

      My daughter is only 1.5 years old, I was diagnosed with stage IV 3 months ago.

      Sometime when my wife and I had time together in hospital I said to her that The only thing that is really positive that I can see at the moment is that it hit me, not her.

      You are right in saying that you cannot imagine to face your own mortality and how your husband feels. On the other hand The ones suffering from it cannot imagine what their loved ones are going through. I imagine it to be at least as tough to see your loved ones suffer as it is to suffer with somebody you love without being able to physically help!

      You maybe would not imagine that just being there with him and for him is all that is needed!

      Take care of yourself!

      Chris

      • May 9, 2014 at 1:53 pm
      eturner
      Participant

      Hi, Virginia 

      My name is Emily and this is the first post I have ever replied to. My husband has had stage 4 since sept.2013, its in his bones and lung. 

      The feelings you are having.. I have them as well. Sometimes I feel like I'm shuting everyone out to decrease the pain I feel. 

      My husband is 33 years old and we have a 13 year old daughter and 10 year old son. Sometimes I get made at myself for feeling sorry for myself. I have my good days and my bad days. It truly is a "rollercoaster"  when it comes to melanoma, and the waiting is the worst.

      Learning to cope and helping my children cope has become my life and my goal.

      Feel free to email me anytime or on FB ( Emily Ryder Turner ) 🙂

      You and your husband and daughter will be in my prayers.

       

      Emily Turner

      • May 9, 2014 at 1:53 pm
      eturner
      Participant

      Hi, Virginia 

      My name is Emily and this is the first post I have ever replied to. My husband has had stage 4 since sept.2013, its in his bones and lung. 

      The feelings you are having.. I have them as well. Sometimes I feel like I'm shuting everyone out to decrease the pain I feel. 

      My husband is 33 years old and we have a 13 year old daughter and 10 year old son. Sometimes I get made at myself for feeling sorry for myself. I have my good days and my bad days. It truly is a "rollercoaster"  when it comes to melanoma, and the waiting is the worst.

      Learning to cope and helping my children cope has become my life and my goal.

      Feel free to email me anytime or on FB ( Emily Ryder Turner ) 🙂

      You and your husband and daughter will be in my prayers.

       

      Emily Turner

        • May 9, 2014 at 2:27 pm
        virginia washburn
        Participant

        Thank you Emily. Same here FB( Virginia Washburn). What state are you in?

        • May 9, 2014 at 2:27 pm
        virginia washburn
        Participant

        Thank you Emily. Same here FB( Virginia Washburn). What state are you in?

        • May 9, 2014 at 2:27 pm
        virginia washburn
        Participant

        Thank you Emily. Same here FB( Virginia Washburn). What state are you in?

      • May 9, 2014 at 1:53 pm
      eturner
      Participant

      Hi, Virginia 

      My name is Emily and this is the first post I have ever replied to. My husband has had stage 4 since sept.2013, its in his bones and lung. 

      The feelings you are having.. I have them as well. Sometimes I feel like I'm shuting everyone out to decrease the pain I feel. 

      My husband is 33 years old and we have a 13 year old daughter and 10 year old son. Sometimes I get made at myself for feeling sorry for myself. I have my good days and my bad days. It truly is a "rollercoaster"  when it comes to melanoma, and the waiting is the worst.

      Learning to cope and helping my children cope has become my life and my goal.

      Feel free to email me anytime or on FB ( Emily Ryder Turner ) 🙂

      You and your husband and daughter will be in my prayers.

       

      Emily Turner

      • May 9, 2014 at 2:28 pm
      HopefulOne
      Participant

      Hi Virginia,

      My husband (Stage 3C in Oct. 2012, Stage 4 in May 2013) said the same thing to me, "You didn't sign up for this." And I agree with you – when we said I do – I did. We actually got engaged two months after his melanoma came back and were married two weeks (it had already been planned and he REFUSED to miss our wedding!) after emergency surgery to remove a tumor that had wrapped around his spinal cord and was starting to make him go paralyzed in one leg.

      With or without a marriage license, when I fell in love with him – I signed up for a lifetime of commitment to him.

      This journey is a rollercoaster for everyone involved. In my humble opinion, every and any reaction, thought or emotion is OK. We are all different and will react differently at different times. Everything could be going great and you could suddenly just break down and cry. Sometimes things can be going bad and you'll find yourself cheerfully singing a song. 

      I've just learned to sort of embrace and acknowledge any random or obsessing thought I have and let it be what it is. I don't judge myself for what I think – I just let those thoughts and emotions go through me as they need to.

      I wish you and your husband – and everyone on this thread and forum – the best of luck. May we all find lasting therapies and hopefully someday a cure!!

      Take care,

      Kimberly

      P.S. My husband had a PET and CT scan yesterday and I'm anxiously awaiting the results … he's a much cooler cucumber than me. 🙂

      • May 9, 2014 at 2:28 pm
      HopefulOne
      Participant

      Hi Virginia,

      My husband (Stage 3C in Oct. 2012, Stage 4 in May 2013) said the same thing to me, "You didn't sign up for this." And I agree with you – when we said I do – I did. We actually got engaged two months after his melanoma came back and were married two weeks (it had already been planned and he REFUSED to miss our wedding!) after emergency surgery to remove a tumor that had wrapped around his spinal cord and was starting to make him go paralyzed in one leg.

      With or without a marriage license, when I fell in love with him – I signed up for a lifetime of commitment to him.

      This journey is a rollercoaster for everyone involved. In my humble opinion, every and any reaction, thought or emotion is OK. We are all different and will react differently at different times. Everything could be going great and you could suddenly just break down and cry. Sometimes things can be going bad and you'll find yourself cheerfully singing a song. 

      I've just learned to sort of embrace and acknowledge any random or obsessing thought I have and let it be what it is. I don't judge myself for what I think – I just let those thoughts and emotions go through me as they need to.

      I wish you and your husband – and everyone on this thread and forum – the best of luck. May we all find lasting therapies and hopefully someday a cure!!

      Take care,

      Kimberly

      P.S. My husband had a PET and CT scan yesterday and I'm anxiously awaiting the results … he's a much cooler cucumber than me. 🙂

        • May 9, 2014 at 2:59 pm
        virginia washburn
        Participant

        Kimberly,

        I wish you both the best.

        My husband was also dx'd w/recurrence in his lungs Oct. 2012. Then Aug. 2013 the brain  mets showed up. As I said in my original post, we are waiting to see if he will be eligible for anti PD-1. He can't have any brain lesions for that to happen. 

        I, too, take his emotions and mine as they come. 

        • May 9, 2014 at 2:59 pm
        virginia washburn
        Participant

        Kimberly,

        I wish you both the best.

        My husband was also dx'd w/recurrence in his lungs Oct. 2012. Then Aug. 2013 the brain  mets showed up. As I said in my original post, we are waiting to see if he will be eligible for anti PD-1. He can't have any brain lesions for that to happen. 

        I, too, take his emotions and mine as they come. 

        • May 21, 2014 at 8:02 pm
        melanomafighter
        Participant
        I am so sorry to all of you dealing with this….I dread ever having to see my family feel the way you all do..I pray for a cure for all of us…Tersia..Indianapolis…Stage 3B
        • May 21, 2014 at 8:02 pm
        melanomafighter
        Participant
        I am so sorry to all of you dealing with this….I dread ever having to see my family feel the way you all do..I pray for a cure for all of us…Tersia..Indianapolis…Stage 3B
        • May 21, 2014 at 8:02 pm
        melanomafighter
        Participant
        I am so sorry to all of you dealing with this….I dread ever having to see my family feel the way you all do..I pray for a cure for all of us…Tersia..Indianapolis…Stage 3B
        • May 9, 2014 at 2:59 pm
        virginia washburn
        Participant

        Kimberly,

        I wish you both the best.

        My husband was also dx'd w/recurrence in his lungs Oct. 2012. Then Aug. 2013 the brain  mets showed up. As I said in my original post, we are waiting to see if he will be eligible for anti PD-1. He can't have any brain lesions for that to happen. 

        I, too, take his emotions and mine as they come. 

      • May 9, 2014 at 2:28 pm
      HopefulOne
      Participant

      Hi Virginia,

      My husband (Stage 3C in Oct. 2012, Stage 4 in May 2013) said the same thing to me, "You didn't sign up for this." And I agree with you – when we said I do – I did. We actually got engaged two months after his melanoma came back and were married two weeks (it had already been planned and he REFUSED to miss our wedding!) after emergency surgery to remove a tumor that had wrapped around his spinal cord and was starting to make him go paralyzed in one leg.

      With or without a marriage license, when I fell in love with him – I signed up for a lifetime of commitment to him.

      This journey is a rollercoaster for everyone involved. In my humble opinion, every and any reaction, thought or emotion is OK. We are all different and will react differently at different times. Everything could be going great and you could suddenly just break down and cry. Sometimes things can be going bad and you'll find yourself cheerfully singing a song. 

      I've just learned to sort of embrace and acknowledge any random or obsessing thought I have and let it be what it is. I don't judge myself for what I think – I just let those thoughts and emotions go through me as they need to.

      I wish you and your husband – and everyone on this thread and forum – the best of luck. May we all find lasting therapies and hopefully someday a cure!!

      Take care,

      Kimberly

      P.S. My husband had a PET and CT scan yesterday and I'm anxiously awaiting the results … he's a much cooler cucumber than me. 🙂

Viewing 14 reply threads

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