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Topic: Meningeal Metastasis

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

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Posted on: Jul 23, 2007 07:06AM

alsks wrote:

Last week, my mom was told by her neurologist that she has cancer cells in the fluid around the brain and spinal chord, which is causing her to be deblitated, and she will probably have less than one month to live. In the last few months she has become completed incapacitated; in a wheelchair, incontinent, with slight dementia. We thought this was due to the whole brain radiation, but the doctor said it wouldn't have happened that fast. Does anyone have any experience with this, and is there anything to do?
The background: My mom (75 year-old) had a brain tumor successfully removed one year ago after being diagnosed with mest to her liver, lung, brain and bones (triple negative). She did very well after the surgery and was then had 13 sessions of whole brain radiation (which in hindsight we would NOT do.) She responded relatively well to her chemo treatments (3 different regimens throughout the year) and many of her tumors have significantly decreased, without many side effects.)
However, about five months ago she began to lose her gait. She went from walking alone to a walker. In the last three months she's been in a wheelchair, completely disabled, incontinent, with slight dementia. She has little quality of life except for the joy of food. From what I've read that was due to the whole brain radiation, for which we were never told the possible side effects or the options. In hindsight, I would have opted not to do it. I feel that we have failed her in her treatments. Last year she was so vibrant and everyone said people live now with metastatic breast cancer. The irony is that the tumors in her body have decreased significantly. She is strong, her vitals are always fine, and the most amazing thing is she's had virtually no pain.
Feeling desperate and sad..any advice is appreciated. Log in to post a reply

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Jul 23, 2007 07:14AM wallan wrote:

I am so sorry. I have no advice, just hugs and warm thoughts.

Wendy A
Dx 3/29/2004, IDC, Right, 6cm+, Stage IIIA, Grade 3, 2/18 nodes, ER+/PR+, HER2- Surgery 3/31/2004 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 6/1/2004 AC + T (Taxol) Radiation Therapy 12/1/2004 Whole-breast: Breast, Lymph nodes, Chest wall Dx 1/25/2017, LCIS/DCIS/ILC/IDC/IDC: Mucinous/IDC: Cribriform, Left, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 3/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Fat grafting Hormonal Therapy Aromasin (exemestane), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 23, 2007 07:30AM Mena wrote:

Hi hon...I'm so sorry that your mom's mets have spread. I lost a dear friend who was a member here once her mets went to exactly where your mom's are. She lived for three months once the diagnosis was made, but she continued to fight.

Her name was Karen and your post brings back wonderful memories of what a fighter she was. She fought like Hell to live. Her neurosurgeon inserted what is called an Ommaya port in her skull to regulate the chemo to her meningeal mets. She continued with chemo until she decided she couldn't physically fight anymore. She was only 46 and a single mother of an 11 year-old boy.

She, too, became bedridden and her mom moved in with her to take care of her. She was a true inspiration to so many of us and her mom told us she died with a smile on her face.

I wish I could offer you some brighter news, but this is what I know of meningeal mets and this disease. Karen didn't suffer, if that helps. She was kept comfortable and we kept sending her cards that her mom would read aloud to her as she couldn't focus her eyes or sit up at the computer.

She would tell you not to lose faith! She would say don't give up on miracles. She would say fight fight fight. She would also say your mom will know when it is time to rest.

You have not failed you mom. Stop that! You've done everything you could humanly do, right? From what you've posted, it certainly looks that way. It is true that some women live for years with metastatic disease. It is also true that every 13 minutes another woman dies from it. It is not your fault. This is a beast of a disease and it is different for every one of us. No two cancers are alike and no two women react the same way to treatment.

I'm sorry you are losing your mom. I will pray for you and her and your family. Take comfort in the fact that she is not in pain. Speak to the oncologist about Hospice care. They are wonderful. I'm sure you need some help? Take care. One day at a time...Mena...xo
Dx 8/8/2004, IDC, Stage IV, Grade 3, 1/20 nodes, mets, ER+/PR+, HER2+
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Jul 23, 2007 07:34AM jansdaughter wrote:

Dear ALAKS - Is your mother or has she been on steroids for the swelling? In 2004 my mother had two tumors and they did surgery and whole brain radiation w/chemo. It took alot out of her but she recovered ok. In April this year, she was diagnosed with two more brain tumors and one of the original ones resurfaced. She did the radiostatic surgery with No luck. Because she had fluid around them, they immeidately put her on steroids and she did not do well on them. She had unsteady gait as well. She got shingles June 3rd, and every test possible was run on her to see why she could not walk without help. She had steroid myopathy.

My mom also had mets to lung and liver as well as brain.

You haven't failed her in her treatments at all. Quite the contrary. All you can do is love her and support her. Be thankful she is not in any pain. That is a blessing in itself.

Just enjoy every moment with your mother. Dianne
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Jul 23, 2007 08:01AM Member_of_the_Club wrote:

Have you considered some kind of mood medication for her? It might also help teh dementia which can be caused/increased by depression. Also, she might consider taking ritalin which can increase energy and also mood.

I'm sorry. This is tough.
Dx 9/30/2004, IDC, 3cm, Stage IIB, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jul 23, 2007 04:31PM LuAnnH wrote:

Sorry to hear about your mom. You have not failed her, no one has any guarantees when we try any tx. I have heard of some women who survived mets to the fluid around the brain. They had the port put in their skull and chemo administered through the port. Not sure if that is an option for your mom.

LuAnn
LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jul 27, 2007 06:25AM MIdb wrote:

Alsks, I think this is what Shelli is suffering from, and I think she has had it for a few years now. My wife is also suffering from it. She is not doing so well. There has been improvement in some areas, but also deterioration in others. Ruth has been in the hospital since 7/9. At one point, she was almost completely unresponsive. She would follow sounds, but could not communicate. She can communicate a little bit now, but not verbally. With continued treatement, we hope to regain some of what was lost, but you never know how much. My primary goal is to get her to her 50th birthday in January

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Jul 29, 2007 12:19PM TMB_4winds wrote:

Hello,
i was diagnosed with cancer cells in my spinal fluid in october 2006. i had an omaya port and weekly infusions of methotrexate for 6 weeks. my fluid has been clear since dec. the treatment was not too bad. although i have other problems, this treatment has been successful so far. however, i know this can resurface so my fluid is checked every 6 weeks. i will pray for your mom.
twyla

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