Where should mom go from here

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ellzmom
ellzmom Member Posts: 20
edited June 2014 in Palliative Therapy/Hospice Care

Mom's spinal tap recently came back positive with brain mets - they're calling it meninges cancer. Mom's symptoms were vomiting, headaches, loss of memory and balance. To make matters worse, she was given too much Decadron (4mg every 12 hours) which caused delirium and insomnia ( steroid psychosis) for three days. This wore off but Mom's still in the hospital (16 straight days) and back on 2mg of Decadron once a day in the morning, which is alleviating some of the head pressure, we're told.

Currently mom is extremely weak, bedridden and not talking, unless asked a question. She also sleeps well and seems to have awareness of her surrounding.

Since she's only able to lie on her sides due to head pains when on her back, her radiologist said mom would need anesthesia in order to remain motionless for total brain radiation treatments. Also, the resident Doc in her care has all but pronounced her dead and wants to literally (it seems) kick her out with no radiation, and to a hospice.

At first the radiologist agreed to begin the 10-day cycle of radiation but recently changed her mind, concurring with the resident Doc that radiation will not be beneficial since she only has ‘months to live'; the radiologist was obviously influenced by the resident Doc.

Should we demand radiation treatment or get mom to another hospital?
We just wanna give mom a fighting chance.

mom's ER-/PR-/HER2+ with story  here: http://community.breastcancer.org/forum/8/topic/739724?page=1#idx_3

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  • Paula513
    Paula513 Member Posts: 8
    edited September 2009

    I am so sorry for your Mom's plight. Will the rads alleviate some of her discomfort?

    I hate to raise this issue but can this possibly be due to her insurance company's protocols?More often than not, they are behind such decisions. You need to talk frankly with the doctors and/or a third party such as a Health Advocate.

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  • Makratz
    Makratz Member Posts: 12,678
    edited September 2009

    Thinking of you and praying for you and your mom.  May God bless you all.

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  • Survive
    Survive Member Posts: 45
    edited September 2009

    You guys should do what you feel best.  We were blessed with my mom's Onc.  He supported anything we wanted to do.  Even when things were not looking good he told us he would do whatever we wanted (legally that is).  He said if Mom wanted to quit treatments he would honor that and if she wanted to keep on going he would support her decision as well.  It seems that too many Doc's are too willing to throw in the towel.  Just look at those people who went against what the Dr.'s told them and they bounced back.  Which left the Dr's. dumbfounded. 

    I wish you luck and keep the faith!

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  • Jadai
    Jadai Member Posts: 182
    edited September 2009

    I am so sorry for what you are having to deal with.  I just lost my mom to Inflammatory Breast Cancer and it is so hard.  It is hard when you have to make the decisions, hard to see her suffer, the stress is so enormous!  All I can say is that you have to do what your gut and heart tell you.  My mom wanted to fight and that she did.  She had radiation up until 8 days before she passed.  Your mom will tell you what she wants and all you can do is support her.  Spend as much time with her as you can.  Again, I am just so sorry that you have to do this.  It is one of the hardest things you will ever do in your life....as I'm sure you already know.  Please feel free to PM me any time.

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  • ellzmom
    ellzmom Member Posts: 20
    edited October 2009
    • Update: Mom has gone to Heaven
    • She passed away 14 Sep 09. Today still feels as sad as the day we lost her and I don't know when or if life will ever become normal again for me and my 6 siblings. She was such a significant person in our lives that it really doesn't matter that I'm 40yo and my mom's youngest is 38yo; the pain of losing her is more than we've ever or will ever experience. She was both mom and dad to her 7 kids, sacrificing all to ensure each one of us successfully achieved our dreams. Anyway, it was all in two weeks that mom went from losing her memory and gait, being told the cancer had spread to her SCF(Leptomeningeal Metastasis) to losing the battle. We're all taking life a day at a time, praying for understanding and peace. Her battle was 2.5 yrs with no remission; it seems like her Onc never was able to find the right chemo combo or that her ER-/PR-/Her2+ (left breast with lung and brain mets)was too aggressive for anything, including Herceptin to catch up to. (Also, we trying not to dwell on the 'what if' scenarios wrt to choice of Onc, hospitals, etc)
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  • Paula513
    Paula513 Member Posts: 8
    edited October 2009

    I am so sorry, ellzmom.

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  • EGAL
    EGAL Member Posts: 539
    edited October 2009

    My heartfelt condolences to you and your family.

    Ellen

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  • j414
    j414 Member Posts: 321
    edited October 2009

    Ellzmom,

    I'm so sorry for your loss, your mom was a strong woman and I'm glad she had her equally strong family taking care of her and surrounding her with a lot of love during her battle.

    Best,

    J

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  • Bitsy
    Bitsy Member Posts: 10
    edited October 2009

    I am so sorry to hear this.

    May God Bless you& your family. Your Mom will always be with you, remember that .....She is in your hearts, your memories, everything she has taught you & guided you through. It will be hard, every holiday, birthday, etc, but it does get better and after the grieving process, you will find acceptance and peace. She is in God's hands now, looking down on all of you.  Make her proud, tell wonderful stories of things you all shared, laugh, keep her alive in your home. It will help you, your family and your Mom...

    God Bless!

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  • spar2
    spar2 Member Posts: 6,827
    edited October 2009

    Another bright angel star in the sky.  Bless your family. 

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited October 2009

    So sorry ellzmom. Cancer sucks, some times it takes the person fast, and sometimes not. Hard to tell.

    May you find peace.

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  • ellzmom
    ellzmom Member Posts: 20
    edited October 2009

    From the bottom of my heart, thanks all, for the encouragement!!  I appreciate every single word you write.  You all are a very special breed.  And I really didn't know what life was about before this cancer experience; It's as if life was just a dream  that I'm only now waking up from.  Love you all!

    -ellzmom

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  • Annie62
    Annie62 Member Posts: 1,081
    edited October 2009

    Elizmom-I'm so sorry you lost your mom. I too am one of seven (and have a daughter named Elizabeth). Witnessing their suffering andlLosing a parent does change your life in a major way. My mom has been gone for 5 years and my dad has been gone for 12 and just last night I had a dream about them.We were getting ready to go to my neices wedding (she'll be married next September). I didn't wake up sad, but happy about having such a nice dream about them.

     I wish you and all of your siblings the best. Stay close and treat each other right to honor your mom.

    Best,

    Annie 

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  • chainsawz
    chainsawz Member Posts: 3,473
    edited October 2009

    I am so sorry you lost your wonderful mother.  Her beautiful spirit shines thru you :> 

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  • Irina
    Irina Member Posts: 987
    edited November 2009

    I'm sorry about your mother. I know what you feel. My mother died from BC in 1995. I still feel pain.

    PRAYERS and (((HUGS)))

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