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Clearblue
Clearblue Member Posts: 186
edited April 2016 in Head and Neck Cancer #1

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Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    glad you came back here, Clear
    This has got to be very distressing for both you and your wife. I cannot imagine.

    It sounds as though the radiation is the best chance right now for survival for your wife, Clear. That having been said, it isn't going to be an easy course, even it is successful; we all know that patients face the possibility of a recurrence or acceleration of their cancer once radiation loses its effectiveness post-treatment.

    As to what questions you should ask: I think I would ask about best and worst case scenarios.

    When you have seen the doctor, you need to let your wife absorb what you find out and then sit and talk about the best decision to make.

    I am sorry you are in this tough place, Clear.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
    Hi Clear. My heart sank when
    Hi Clear. My heart sank when I saw your post. Sending you and your wife much love and prayers.

    Maybe you could check with Dr. Auerbach and Dr. Kutler about their latest findings on radiating Fanconi Anemia patients. I just talked to her and I know that they are compiling info from those of us that have had rads to better understand and treat us.

    Also if she has rads make sure they monitor her blood counts at least once a week. CBC and I'm not sure what else maybe dr auerbach would know tht too. You don't want them to upset her bone marrow and cause a problem there.

    Watch for infection. Thrush, or a fungal infection can be the end for us.

    I forget about swallowing with your wife, I know you told me that at one point she would dialate her own esophogus. Should you consider a peg tube?

    What about checking with the site that Teresa Kennedy gave us. Is it Fanconi.org? Those guys may have more insight for you. Know better questions to ask for FA patients.

    I will be praying for you guys. You know you can always email me.

    Hugs,

    Sweet
  • Clearblue
    Clearblue Member Posts: 186
    #4
    sweetblood22 said:

    Hi Clear. My heart sank when
    Hi Clear. My heart sank when I saw your post. Sending you and your wife much love and prayers.

    Maybe you could check with Dr. Auerbach and Dr. Kutler about their latest findings on radiating Fanconi Anemia patients. I just talked to her and I know that they are compiling info from those of us that have had rads to better understand and treat us.

    Also if she has rads make sure they monitor her blood counts at least once a week. CBC and I'm not sure what else maybe dr auerbach would know tht too. You don't want them to upset her bone marrow and cause a problem there.

    Watch for infection. Thrush, or a fungal infection can be the end for us.

    I forget about swallowing with your wife, I know you told me that at one point she would dialate her own esophogus. Should you consider a peg tube?

    What about checking with the site that Teresa Kennedy gave us. Is it Fanconi.org? Those guys may have more insight for you. Know better questions to ask for FA patients.

    I will be praying for you guys. You know you can always email me.

    Hugs,

    Sweet

    sweet & Nollesmom

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  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Clearblue said:

    sweet & Nollesmom

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    Hi Clear

    There are many of us still here who you might remember, I hope you are still doing well.

     

    Tim

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