Brain met survivors

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menright
menright Member Posts: 256 Member
in Colorectal Cancer #1

I woul love to hear stories of survival from brain mets and your duration.  Searching for timeline answers and accepting all data....weeks...months,,,,years of survival?

 

Mike

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  • jen2012
    jen2012 Member Posts: 1,607 Member
    #2
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    Mike - so sorry to read this.

    Mike - so sorry to read this.  Tarahk found out she had brain mets in Dec 2011 and passed away in August 2013.  I am not sure what she actually died from - if it was the brain mets or something else.  

     

    Hoping for the best for you.  Please let us know how you are doing.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #3
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    Dear Mike

    Those who have been on the board who had brain mets survived from months to years. 

    I would try to be more specific but some of their profiles are still up and I don't want to risk CSN monitoring swooping in to take them down which seem to be the policy now.

    As with any stage of this disease, it is so variable. 

    There is alwasy a "first time" for everything.  May your case be our "first time" for a friend in this situation to have many, many more years.

    Hugs and love,

    Marie who loves kitties

  • CSN_Rowan
    CSN_Rowan Member Posts: 87
    #4
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    Lovekitties said:

    Dear Mike

    Those who have been on the board who had brain mets survived from months to years. 

    I would try to be more specific but some of their profiles are still up and I don't want to risk CSN monitoring swooping in to take them down which seem to be the policy now.

    As with any stage of this disease, it is so variable. 

    There is alwasy a "first time" for everything.  May your case be our "first time" for a friend in this situation to have many, many more years.

    Hugs and love,

    Marie who loves kitties

    Clarification on profiles of deceased CSN members

    Hello all, 

    I'm one of the members of the CSN support team, and I just wanted to clarify that we don't delete or alter profiles after someone has passed away. Our policy is to block anyone else from posting under that person's name to protect it from hackers who target email addresses and online profiles of the deceased. I know we have had some problems with this changing how profiles display if you try to find them through the member search function, but you should be able to click on any past posts by a deceased member and have their profile come up. If you are finding that you cannot actually do this, please email us through the "Contact CSN" button and let us know so that we can have our tech folks look into it.

    - Rowan

    CSN Support Team

  • menright
    menright Member Posts: 256 Member
    #5
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    jen2012 said:

    Mike - so sorry to read this.

    Mike - so sorry to read this.  Tarahk found out she had brain mets in Dec 2011 and passed away in August 2013.  I am not sure what she actually died from - if it was the brain mets or something else.  

     

    Hoping for the best for you.  Please let us know how you are doing.

    18 months is better than some

    18 months is better than some story lines.  Thanks.  Mike

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #6
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    CSN_Rowan said:

    Clarification on profiles of deceased CSN members

    Hello all, 

    I'm one of the members of the CSN support team, and I just wanted to clarify that we don't delete or alter profiles after someone has passed away. Our policy is to block anyone else from posting under that person's name to protect it from hackers who target email addresses and online profiles of the deceased. I know we have had some problems with this changing how profiles display if you try to find them through the member search function, but you should be able to click on any past posts by a deceased member and have their profile come up. If you are finding that you cannot actually do this, please email us through the "Contact CSN" button and let us know so that we can have our tech folks look into it.

    - Rowan

    CSN Support Team

    FYI - does not work

    I will send this email, but wanted to reply that the profiles do not come up.

    The avitar of the person is still there, but cannot access their profile infomation either via their post or by search.

    I do not consider the "avitar" to be their profile.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #7
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    Lovekitties said:

    FYI - does not work

    I will send this email, but wanted to reply that the profiles do not come up.

    The avitar of the person is still there, but cannot access their profile infomation either via their post or by search.

    I do not consider the "avitar" to be their profile.

    Exactly

    yep, their personal information that they shared is gone, as I said before posts can be found but not profile, CSN, takes that away from us.  I'm trying to figure out how to keep mine (so much history in it) thinking about having son join and have my profile put on his.  I hate the thought that when we die CSN wipes our "memories" ie profile out, I wrote those things so people could look, learn and leave a bit of my legacy. So sad.  I too, sent email to CSN to complain about this, I hope that more do, so that they will stop erasing us.

    Winter Marie

  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #8
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    Here's to old age!

    Dear Mike,

    I am praying you live long enough to die of advanced old age!

    *hugs*

    Gail

     

     

  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #9
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    tootsie1 said:

    Here's to old age!

    Dear Mike,

    I am praying you live long enough to die of advanced old age!

    *hugs*

    Gail

     

     

    RIGHT ON

    mike looking good

     

    michelle

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