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Stage 4-Not doing treatment

Forums General Melanoma Community Stage 4-Not doing treatment

  • Post
    JenRena00
    Participant
      My spouse has stage 4 melanoma and has decided to discontinue treatments. It has been 6 months since his last treatment. I do not know what to expect. We haven’t asked the doctors or nurses what time line we have and I feel like its just a waiting game. I understand his reasoning in not wanting to find out but I am one of those people who needs to know so I can plan and know what to expect. I want to take care of him and make sure he lives with the best quality of life as possible. He is still semi active but has a lot of pain. Could anyone give me any insight as to what I can do, expect or survival rate at this point? I do not want to go behind his back and ask his doctors because I am afraid that will upset him. I am turning to you guys for this support and knowledge. This has been a very hard time and I know its just going to get harder physically and emotionally.
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        Bubbles
        Participant
          I cannot give you any reasonable prediction without having your husband’s medical records, and even then – if you asked his doctor – such a prediction is not very reliable as melanoma and the folks who have it vary greatly. My best recommendation is that you speak with your local Hospice group. They are no longer a resource strictly for the “days before passing”. They give a great deal of help in coping, pain management, and family support. Even if your husband won’t agree to participate, they may have information and support that will help you. Sorry for all the pain and sorrow you must be dealing with. There are also many support groups for caregivers that you may find helpful. Your local hospital (or husband’s oncologist) should have a social service department that point you in the right direction. A referral to a pain specialist may be helpful as well. I wish you both my best. Celeste
            jbronicki
            Participant
              I echo what Bubbles said, both about predicting anything with certainty and hospice does offer so much more. My dad had a progressive disease and we had hospice did come join him several times a week for the last two years. He really didn’t want to do it first, but it ended up being some of his favorite time above anything else that was focused on things that he enjoyed doing (playing piano, singing, etc.) and they gave our family some of the best support ever. They really understand how much the caregiver goes through as well. My aunt gave me some good advice when she said to let someone help me help my dad so I could just focus all energy on loving my dad. I know I needed to hear that. Wishing the best as well, Jackie
            JudiAU
            Participant
              I’m sorry. If this was my spouse, I would probably speak to my husbands doctors. I’d want to confirm that we had realistically exhausted treatment options and that the decision to refuse treatments wasn’t grounded in temporary depression etc but aligned with his probable health outcomes. Not that I wouldn’t respect my spouse’s choices, but maybe an antidepressant might help,

              I don’t know if your husband has brain mets or not, but this brain tumor board has several very helpful and compassionate threads about end of life care and hospice. https://www.inspire.com/groups/american-brain-tumor-association?source=email&utm_source=email&utm_medium=AS&utm_campaign=AS&utm_content=2020-06-08 I’ve had brain mets several times and I found it very helpful to understand What options look like.

              tedtell1
              Participant
                Hi Anon;
                First, please make up a name for your posts as then people can refer to your past posts and know what you have said before..and what the history is. I don’t answer a lot as people like Celeste (Bubbles) are much better than me with the clinical stuff. Unfortunately, when it comes to end of life care however, I do have the experience. My first wife had breast cancer, then scleroderma and passed away in hospice care while I cared for her here at home, last year my dad passed away while in hospice care. They are wonderful and only do what you want them to. They provide a great amount of resources and can help you a lot. I am also a stage IV survivor. If your spouse does not want to participate, all you can do is be loving and seek your own counsel while you care for him. God Bless and keep in touch here!
                Ted
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