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Topic: Where should mom go from here

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  • Posted on: Sep 10, 2009 11:53 pm
Dominica
Joined: Mar 2009
Posts: 20
ellzmom wrote:

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

Posts 1 - 15 (15 total)
Paula513
Joined: Sep 2006
Posts: 26
Sep 11, 2009 07:57 am Paula513 wrote:

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.

Makraz
MA
Joined: Sep 2008
Posts: 4,014
Sep 11, 2009 08:06 am Makraz wrote:

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

Linda Thanks to all my sistahs for helping me get through this hell. started Tamox 10-08 Dx at 42 y.o.
Diagnosis: 6/3/2008, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-
Survive
Joined: Nov 2008
Posts: 43
Sep 11, 2009 12:52 pm Survive wrote:

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!

Jadai
Joined: Sep 2008
Posts: 169
Sep 15, 2009 10:19 pm Jadai wrote:

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.

ellzmom
Dominica
Joined: Mar 2009
Posts: 20
Oct 6, 2009 09:19 am ellzmom wrote:
  • 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)
Current Dx: 4/2008, Stage IV, Grade 3, ER-/PR- and HER2 Equivocal
Diagnosis: 7/23/2007, IDC, 1cm, Stage I, Grade 3, 0/0 nodes, mets, ER-/PR-, HER2+
Paula513
Joined: Sep 2006
Posts: 26
Oct 6, 2009 12:10 pm Paula513 wrote:

I am so sorry, ellzmom.

EGAL
RI
Joined: Apr 2007
Posts: 468
Oct 6, 2009 06:46 pm EGAL wrote:

My heartfelt condolences to you and your family.

Ellen

EGAL 10/06 dx'd with IDC Stage 3, 10/08 brain mets
Diagnosis: 10/19/2006, IDC, 6cm+, Stage IV, Grade 3, 15/17 nodes, mets, ER-/PR-, HER2+
j414
NYC
Joined: Jun 2009
Posts: 209
Oct 6, 2009 06:53 pm j414 wrote:

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


Diagnosis: 4/2009, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2-
Bitsy
Chicago, IL
Joined: Aug 2008
Posts: 10
Oct 14, 2009 11:43 pm Bitsy wrote:

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!

Bitsy
spar2
OK
Joined: Jan 2004
Posts: 6,036
Oct 27, 2009 06:40 pm spar2 wrote:

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

www.spar2.multiply.com Lets help make each other's life better
Fitztwins
MI
Joined: Dec 2004
Posts: 7,731
Oct 27, 2009 07:28 pm Fitztwins wrote:

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

May you find peace.

Wash away my troubles, wash away my pain, with the rain of shambala
Diagnosis: 12/12/2004, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2+
ellzmom
Dominica
Joined: Mar 2009
Posts: 20
Oct 27, 2009 09:29 pm ellzmom wrote:

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

Annie62
NJ
Joined: Jan 2005
Posts: 320
Oct 28, 2009 02:52 pm Annie62 wrote:

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 

Dx 11/2004 Stage IIIc IDC Grade 2 11/19 nodes, ER+/PR+ Her2-
chainsawz
Tucson, AZ
Joined: Sep 2008
Posts: 259
Oct 28, 2009 04:50 pm chainsawz wrote:

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

Lisa -mets to lungs & brain.....the weakest step toward the top of the hill, toward sunrise, toward hope, is stronger than the fiercest storm.
Diagnosis: 7/21/2008, IDC, 3cm, Stage IV, Grade 3, 0/2 nodes, mets, ER-/PR-, HER2+
Irina
Rockford, IL
Joined: Feb 2008
Posts: 699
Oct 31, 2009 11:25 pm Irina wrote:

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)))

Dx 2/2004, 4cm, Stage IV, 5/0 nodes, mets ER+PR+HER2-
Diagnosis: 2/2004, IDC, 4cm, Stage IV, 5/0 nodes, mets, ER+/PR+, HER2-

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