New here - advice on immunology

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SharonH56
SharonH56 Member Posts: 16 Member
in Caregivers #1

I'm new here. Last June my husband had 2 surgeries to remove a melanoma and lymph nodes from his side. After the 2nd surgery the biopsy was clear and his follow up PET scan in October was clear. Now, after his most recent PET scan, they see nodules on the bottom of his lung consistant with metastatic cancer. This Thursday he's scheduled for a needle biopsy and then they're talking about immunotherapy.

Is anyone familiar with immunotherapy? I understand it's different from chemotherapy but there also seem to be a lot of similarities, especially concerning side effects.

I have no idea what to expect and I'm really scared. Trying to stay strong and positive for his sake, but it isn't easy.

Any advice?

Sharon

 

 

 

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  • SharonH56
    SharonH56 Member Posts: 16 Member
    #2
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    How to deal with well meaning but misguided friends

    Since my last posting, my husband has now received 2 infusions of Keytruda, which is an immunotherapy drug. He hasn't had any side effects but I always feel like we're waiting for the other shoe to drop. It's very stressful for both of us.

    The problem I'm having is dealing with folks who are apparently well meaning, but insist on telling us things like "its caused by chemtrails" or "have you had the mercury fillings in your teeth removed", or things like that. I know everyone believes what they believe, but sharing what you THINK caused the cancer doesn't help. 

    I don't mean to be rude to them, but how do you deal with people like that? I would much rather they say "if you ever need to talk, call me". Or, invite us to dinner so that we don't have to cook on days when we've been to the doctor and are too exhausted afterwards to cook a meal. 

    How do I verbalize these things without causing hurt feelings?

     

     

     

  • Sigother
    Sigother Member Posts: 2
    #3
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    SharonH56 said:

    How to deal with well meaning but misguided friends

    Since my last posting, my husband has now received 2 infusions of Keytruda, which is an immunotherapy drug. He hasn't had any side effects but I always feel like we're waiting for the other shoe to drop. It's very stressful for both of us.

    The problem I'm having is dealing with folks who are apparently well meaning, but insist on telling us things like "its caused by chemtrails" or "have you had the mercury fillings in your teeth removed", or things like that. I know everyone believes what they believe, but sharing what you THINK caused the cancer doesn't help. 

    I don't mean to be rude to them, but how do you deal with people like that? I would much rather they say "if you ever need to talk, call me". Or, invite us to dinner so that we don't have to cook on days when we've been to the doctor and are too exhausted afterwards to cook a meal. 

    How do I verbalize these things without causing hurt feelings?

     

     

     

    We've made our decision

    Those people make me crazy!  I'm ok with the ones who suggest something, and then leave it alone when we indicate no interest.  But the ones who keep pushing a quack cure or treatment are another story.  We just say "thanks for the information, but we've researched this and have made our decision as to the course of treatment we are going to follow.  We are comfortable with that, and since you care for us, we're sure you will support this decision."  So far that seems to stop most of those conversations from continuing....  Best of luck....

  • SharonH56
    SharonH56 Member Posts: 16 Member
    #4
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    Sigother said:

    We've made our decision

    Those people make me crazy!  I'm ok with the ones who suggest something, and then leave it alone when we indicate no interest.  But the ones who keep pushing a quack cure or treatment are another story.  We just say "thanks for the information, but we've researched this and have made our decision as to the course of treatment we are going to follow.  We are comfortable with that, and since you care for us, we're sure you will support this decision."  So far that seems to stop most of those conversations from continuing....  Best of luck....

    Thank you, it's nice to hear

    Thank you, it's nice to hear that someone understands what I mean. I don't want to hurt our friends feelings, but I do think I have to tell them how I feel, in a nice sort of way. They may mean well, but unless it's something you're going through it's difficult for people to understand the turmoil you're feeling. There's so much fear and anxiety to deal with, and worrying about other people's feelings on top of it is just too much sometimes. Thanks again.

  • fuchsiasky
    fuchsiasky Member Posts: 3
    #5
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    SharonH56 said:

    Thank you, it's nice to hear

    Thank you, it's nice to hear that someone understands what I mean. I don't want to hurt our friends feelings, but I do think I have to tell them how I feel, in a nice sort of way. They may mean well, but unless it's something you're going through it's difficult for people to understand the turmoil you're feeling. There's so much fear and anxiety to deal with, and worrying about other people's feelings on top of it is just too much sometimes. Thanks again.

    I know this one all too well.

    I know this one all too well.  Recently someone told us that if he would just drink green tea and eat more blueberries that he could be cured!  Really!?  If that was the case I am sure that the doctors would have told us that.  

    I think most people just don't know what to say or do.  So they try to help not realizing that it isn't actually helpful.  We have taken to just smiling and nodding.  

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