Home Forums For Caregivers Only This is getting so hard.

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  • #20510
    Mrs_Ras
    Participant

    He is in denial that the cancer has spread. He says that since they didn’t do any biopsies of his lungs, liver or kidneys that they don’t know for sure if the lesions found on the CT scan are definitively melanoma. That the ones in the lungs could be from smoking, the kidneys and liver from drinking too much soda over the past 50 years. And now he says it’s ‘fishy’ that they want him to go halfway across the state to take a medication that isn’t guaranteed to work. He says it doesn’t make sense that they can’t do it here locally. I’m to the point I want to scream!!!!!!!!!!

    Valerie

    #55677
    Chinix
    Participant

    Dear Valerie,

    I’m new in here. I wanted to tell you that your post moved me. Denial is normal. It’s part of the process but it’s very hard for the people around. I can totally understand you wanting to scream. Did you scream? Sometimes it helps.

    Take care of yourself.

    Viviane

    #55678
    Catherine Poole
    Keymaster

    Valerie,

    I’m so sorry to hear this latest frustration. Yes, I agree, that denial is a coping method and maybe some counseling may help him or not. As long as he does the therapy, then denial is fine. What therapy are they making you travel to get? I may have missed that on the other forum. Please let me know more.

    #55679
    Mrs_Ras
    Participant

    Catherine,

    To get the hIL-2 he’d have to go to UVA, which is about 2 hours from here. The Ipi can be done here locally.

    Viviane,

    If there is such a thing as a ‘silent scream’, then yes I did scream! I know denial is part of the process, it’s just hard seeing him battle with this both physically and emotionally.

    I think the entire family would benefit from therapy! This is a lot harder than it looks!

    Valerie

    #55680
    Catherine Poole
    Keymaster

    Well IL2 has a 6% response rate, very old therapy, and IPI/Yervoy has about a 20% response rate, so you can choose to go with the local therapy and benefit. Yes, counseling for the whole family is a great idea. This is so hard, I know. Let us know how things are going.

    #55681
    dkmc
    Participant

    Hi Valerie,

    I am wondering why biopsies were not done. Don’s lung & back masses seen on PET were biopsied & so we knew exactly what he was dealing with. But if onco is very sure it is melanoma & he is stage 4 I agree with Catherine ipi first is the way to go. Unless it is very aggressive & this is the reason they would encourage IL2. You can have ipi here in town. Just remember with melanoma there is no right answer, no “this is the protocol that is almost sure to work” like some other cancers. I think this is one reason it is so hard. You make your choice & go with it. You have plan B in the wings. Remind him a second opinion from UVA is not a bad idea. It is a beautiful drive & wine country! Mix some good in with the very bad…it will be good for your soul. Whatever you & your husband decides- go with it & know we are all rooting for success! Karen

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