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Topic: Some questions about end-stage brain cancer

Forum: Caring for Someone with Stage IV or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Jul 30, 2019 03:54AM

Dishsoap wrote:

I made a post a few weeks back about my mom's liver and bone mets, being confused about why she was doing so poorly. Well, we got answers, and it isn't good. She has about 20 lesions in the brain. One week ago today, she was given a month to live. But... she's doing very well. She got out of the hospital and now has much of her strength back. She's a little weak, but thanks to pain meds she isn't in pain, no confusion, no seizures or anything. Is this how it goes? We thought it would be ugly, that she'd have major personality changes, disorientation, etc... but so far, just weakness. I live about 800 miles away but am now home to take care of her during her time in home hospice.


I'm hoping SO much that this is just how it goes sometimes. You get weaker and weaker until the end. We don't know anyone who has seen this stage of cancer in the brain, so we just don't know what to expect... I'm curious to hear your stories.

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Jul 30, 2019 06:28AM illimae wrote:

dishsoap, I’m a bit surprised that she was given a month and sent home. Even with 20 + brain mets, whole brain radiation is typically recommended. Is there some other reason for this lack of treatment?

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine)
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Jul 30, 2019 01:33PM Dishsoap wrote:

Whole brain radiation was presented as an option and we did wrestle with that decision. We were told her it would give her an additional month. My mom decided she didn't want to do it, and as her family of course we support her 100%. Right now she is comfortable, but she is also done fighting, and ready to go home.

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Jul 30, 2019 02:22PM edwards750 wrote:

So sorry Dishsoap. It has to be so difficult for you and your mom. Cancer is such an insidious disease. I keep praying they find a cure. I’ve lost 2 ladies already and now my sister’s BC has metastasized to her stomach. She is undergoing chemo now. Brutal.

You are there with her and that’s important. I hope she continues to not have pain.

Keep the faith.

Diane

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Jul 30, 2019 03:27PM Dishsoap wrote:

I am so sorry to hear about your sister Diane. I pray that she stays optimistic through chemo and that her pain and discomfort is managed.

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