What to do...

njkate07
njkate07 Member Posts: 19 Member

Hubbie was diagnosed 1 year ago with stage 4 kidney cancer.

Cabo made my husband violently ill,  he also ended up with colitis from it. Had bad side effects from Votrient and Opdivio did nothing, the mets in his lungs progressed so now taking Affinitor.

His MRI on Tuesday now shows 4 new met tumors in his brain, they want to do full brain radiation 5x a week for 4 weeks. I was expecting this as 2 weeks ago it was like someone turned the switch off, confusion, sleeping a lot, memory loss, more cranky than normal. His MRI back in November showed the original tumor shrunk  and dormant, but detected a little dot on his front lobe

Not sure what to do, his visiting nurse who comes to drain his pleurx drain said it's really time for hospice.

I am at a loss and so confused

Comments

  • hardo718
    hardo718 Member Posts: 853
    So sorry about this news

    I can't offer much but I will keep you in my prayers,

    Donna~

  • stub1969
    stub1969 Member Posts: 954 Member
    Smart Patients

    Hi, Kate.

    I'm sorry to hear this news.  Unfortunately, can't offer you much help other than my prayers.  There are members here that have had their backs against the wall like you and your husband.  I'm sure they will offer you some advice.  I'd like to direct you to the Smart Patients website.  You'll find many Stage 4 patients that are traveling or have traveled the same path as you and can offer support.

    Stub

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited February 2017 #4
    Kate (?) so sorry for what

    Kate (?) so sorry for what your hubby and you are going through, enuff!!  He is so lucky to have YOU in particular to be there for you, to love and care for him. Who do you have to turn to? (besides us).

    Also, seems cancer likes to continue its battle. However, just so you know, if...and when.. you choose to go with Hospice, you CAN change your mind if you want to seek another treatment. Know that please. They often sign people on and off hospice and its okay. Its also FREE and you get a RN weekly, if not more often depending on your husband's needs. YOU also get a social worker, chaplain, and aide to assist him with bathing a few times a week. Its a team approach to help him and YOU as well. They are very good at following changes, and addressing pain issues. You will have support and information on how to make the best decisions. So just so you know, its NOT giving up! okay?

    Sending you a hug and know that i am available privately, in our email section.

    Here for you.. praying for your hubby to know some relief..

    Jan

  • njkate07
    njkate07 Member Posts: 19 Member
    edited February 2017 #5
    Jan4you said:

    Kate (?) so sorry for what

    Kate (?) so sorry for what your hubby and you are going through, enuff!!  He is so lucky to have YOU in particular to be there for you, to love and care for him. Who do you have to turn to? (besides us).

    Also, seems cancer likes to continue its battle. However, just so you know, if...and when.. you choose to go with Hospice, you CAN change your mind if you want to seek another treatment. Know that please. They often sign people on and off hospice and its okay. Its also FREE and you get a RN weekly, if not more often depending on your husband's needs. YOU also get a social worker, chaplain, and aide to assist him with bathing a few times a week. Its a team approach to help him and YOU as well. They are very good at following changes, and addressing pain issues. You will have support and information on how to make the best decisions. So just so you know, its NOT giving up! okay?

    Sending you a hug and know that i am available privately, in our email section.

    Here for you.. praying for your hubby to know some relief..

    Jan

    Thank you Jan. It's hard

    Thank you Jan. It's hard because he goes back and forth with what he wants, if he said yes, I'm taking the radiation that is wht I would do.

    He says one thing and then an hour later something totally different. He says everyone just wants him to die, thankfully nurse was here and she said that's normal.

    Thankfully my daughter and son in law are on there way to Florida, where I live,  from NJ, as daughter thinks I need someone right now

  • mrou50
    mrou50 Member Posts: 389
    Kate

    I will be praying for you and your family.  As for what to do this is one of those times that the family needs to make the decision and your husband more than anyone else has the final say.  My advice just keep loving him and doing what you are doing.

    Mark