Scared Daughter with Questions about Brain Mets

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momzg1rl
momzg1rl Member Posts: 3
edited June 2014 in Just Diagnosed With a Recurrence or Metastasis

Hi All:  My Mom has BC Triple- with brain mets diagnosed in Feb. '12. We have done Gamma Knife and she is not getting ANY better. Considered whole brain radiation, however, she is too weak to withstand treatment at this time. The rad onc told us that typically brain mets prognosis is measured in months which was a devastating blow. I feel very alone in this whole thing and would greatly appreciate any and all input/feedback you may have. I need to do everything within my power to take the very best care of her that I can.  She's not just my mom...she's my best friend.  Please help.

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  • octavia
    octavia Member Posts: 1
    edited April 2012

    So sorry that you and your mom are facing this.  Thankfully, she is not alone b/c she has you.  My sister has IBC/Triple neg. cancer with newly diagnosed brain mets. She has not been given any "length of time" .  We don't want to know and have that hanging over our heads.  She feels ok for now and that is what we are clinging to.  I am fearful for what she has to face in the next few months.  I continue to hope and pray for a miracle.  I believe they can happen, it is a matter of if it will happen.  I wish I had advice.  THis is all new to us.  Blessings to you and yours.

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  • Nanorama
    Nanorama Member Posts: 50
    edited April 2012

    Truly breaks my heart to read your post. All I can say is, your mom is lucky to have you.  Try to just offer her your loving support each day, and also seek redemptive moments you can share together (smelling flowers, listening to music you both like, petting a dog?, etc), and try not to dwell on what may happen at some unspecified time in the future.  No one, not even the rad onc, knows how long each of us has on this earth. A dear family friend was told she had 6 months to live; she hung around for 3 years - "to spite the doctors," she said. So take each day as it comes. See if there's a support group in your area for caregivers and/or for young adults with parents w/cancer.  There are also lots of support groups online - including this one. You are not alone - there are so many listening ears and open hearts out here, a whole community of people offering you a virtual hug. Peace be with you and your mom. 

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  • EnglishMajor
    EnglishMajor Member Posts: 2,495
    edited April 2012

    http://brainmetsbc.org/en/content/frequently-asked-questions-about-brain-metastasis

    http://forum.tnbcfoundation.org/tnbc-metastasis-recurrence-users_forum5.html 

    I am not triple negative but wanted to suggest these resources. Hang in there.

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  • Lce0723
    Lce0723 Member Posts: 1
    edited May 2012

    I am so sorry to hear this. Your Mama is extremely lucky to have you. My mom went Stage IV in Feb 2011.We learned last week, after a very scary seizure, that she had 16 lesions of IBC in her brain. She is triple negative. She has just finished her brain radiation and is now being weened off of steroids. I have been reading, researching and trying to find answers everywhere. Nanorama had some extremely comforting words and I am going to keep her post in mind as I move forward. I know it is so hard to not know what the future holds. The uncertainty of it all is very troubling, but keep in mind that NO ONE is like your Mama, she is unique to everything she is being treated with, just like my Mama. You never know how things may impact her and she really could turn this around! Miracles happen and not any person on this earth can define the length of life. Try to stay positive, keep your head up, and keep Mama smiling. Hugs from Raleigh, NC.  You are not alone!

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  • momzg1rl
    momzg1rl Member Posts: 3
    edited May 2012

    Thank you for all of the wonderful responses and well wishes.  Every moment that I have with my mom is a blessing, a true treasure. She is more than just my mom....she is my best friend..my hope..my hero.  We have had two hospital stays recently for SVT (type of tachycardia) and congestive  heart failure that is being attributed to the Adrimiacin we had in the beginning...Ugh!  I feel like we took a sharp left turn yesterday.  Mom slept about 22 hours and ate nothing.  When she's awake she is alert, but doesn't stay awake for long.  BP is super low, 75/50 but she doesn't want to go to the hospital.  I am going to explore increasing Decadron to see if it helps at all.

    Just wanted to say Happy Mother's Day to everyone!!!  No matter what the circumstances "LOVE" truly does conquer all! Love your mom's and love yourselves...ALWAYS.

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  • sweetbean
    sweetbean Member Posts: 1,931
    edited May 2012

    Hi, I just wanted to say that I am thinking about you.  She is lucky to have such a wonderful daughter and I know that you will be an amazing reflection of her love and guidance even after she is gone.  

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited May 2012

    Unless a mix is thrown in after the PBMX pathology, in which case drug therapy or chemo might be warranted.

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  • Bvtt3rfly
    Bvtt3rfly Member Posts: 1
    edited August 2012

    My mom, too, has been diagnosed with Brain Mets. She is in such denial that I don't know what to do. I feel alone as well. Took her to group cancer counseling this a.m., and she was not thrilled. I plan to go back next Friday and to start attending the caregiver counseling that will be starting in October or so.

    Scared. Go to the cancer center and ask to be a part of the counseling. You WON'T regret it! 

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