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Topic: New Brain Mets Diagnosis Needing Surgery; Looking for Hope!

Forum: Stage IV/Metastatic Breast Cancer, Open to All To Contribute —

Topics here are started by members with a Stage IV/Metastatic Breast Cancer diagnosis, but open to all members to contribute to discussions. Please note that there is a separate forum, Stage IV/Metastatic Breast Cancer ONLY, where topics are open only to those members.

Posted on: Mar 31, 2021 08:22PM

pugzilla101 wrote:

My mother recently was admitted to the hospital after experiencing severe pain, headaches, and general loss of balance. CT scans revealed a spread of her metastatic breast cancer from her right lung (original location) to her left lung. There's been additional growth in a lymph node in her chest, and some evidence of cancerous growth on the skin. Additionally, they identified a tumor in her brain indicative of additional metastatic spread. She is scheduled to undergo surgery on Friday to remove the tumor in her brain, which will be followed by local radiation, and new chemotherapy treatments.

This news comes as a bit of a shock to my Mom and I since she was very stable over the past 6 months on the COC protocol and not taking chemotherapy. She was initially diagnosed with Stage IV TNBC (mets to right lung) back in Jan 2020. After undergoing chemotherapy (Abraxane), immunotherapy (Tecentriq), along with COC protocol and Jane Mclelland vitamin/supplement plan, she made significant progress in reducing the size of her lung mets to less the 1cm. A break from chemotherapy ensued for about 6 months with CT scans every 3 months. Each CT scan showed stable results until this one.

Really searching for some hope and options as we deal with this new development. It's pretty deflating to have such positive progress as of late and encounter this setback. Makes me question what we're missing when it comes to the COC protocol and our vitamin/supplement plan. We've recently looked into the benefits of Fenbendazole and are looking into ways to get it and see if it'll help her condition.

Hoping there are others with TNBC and brain mets experiences we can learn from as we cope with this new development.

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Mar 31, 2021 10:15PM - edited Mar 31, 2021 10:16PM by moth

pugzilla, I'm sorry your mom has experienced a progression. It's always so upsetting.

There is a brain mets thread that you might want to read through https://community.breastcancer.org/forum/8/topics/...

as well as the metastatic TNBC thread. https://community.breastcancer.org/forum/8/topics/...

On p 93 of the mTNBC thread, 4th post from top I have been keeping an updated list of treatments. Your mom may be a candidate for the recently approved Trodelvy at some point in the future - its approved for pts with progression on 2 chemos in the metastatic setting. It is an antibody drug conjugate combined with a chemo payload which is proving very effective for tnbc.

Would your mom's oncologist consider putting her back on tecentriq & abraxane since she had good response to it last time? I've be on tecentriq + taxane for >12 months now & don't expect to come off it until I have progression or unacceptable toxiciities.

I can't speak to any supplements & I think with the blood-brain barrier, there is much lower likelihood of anything working like that. We have considerable trouble targetting the brain as it is because of the blood-brain barrier.

I hope she has a successful surgery. Sounds like a good aggressive plan is in place for her.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Apr 1, 2021 05:10PM pugzilla101 wrote:

Hi moth,

Thanks for the thread references, I'll check them out.

I learned today that she is a candidate for Trodelvy and that'll be the plan for her after recovery from surgery. Excited to see a new and promising chemo option for her moving forward. I'll be meeting with her oncologist tomorrow, but I believe she'll be doing Trodelvy only. She developed some side effects after taking Tecentriq for a long time that led to her getting put on a steroid. Stomach pains were her most challenging side effect when on the immunotherapy drug after several cycles.

The surgeon mentioned that the surgery itself tends to weaken the blood/brain barrier. Sounds like that could be a good thing for chemo, but perhaps a risk for the benefits of the blood/brain barrier. Her brain tumor is on the outside of her brain, and the surgeon was pretty confident the procedure would be straightforward. While the idea of brain surgery is quite daunting, it was comforting to hear the confidence of the surgeon. Pretty surprised to hear that recovery and release from the hospital could be the next day.

I appreciate the response, always comforting to hear from others in the community.

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Apr 1, 2021 06:01PM illimae wrote:

Pugzilla, I am not TNBC but I do have brain mets and did have surgery (craniotomy) last year in January to remove an area of cancer in my cerebellum. The surgery itself was fine, although scary going in, not knowing what to expect. I spent a few days recovering in the hospital before returning home. I had a complication of done temporary nerve damage that left me with extreme difficulty swallowing but this is very uncommon. I had to sleep with my head elevated, which I found annoying and was on steroids for a few weeks to prevent swelling. There was mild headache and discomfort but pain medication worked and I needed very little assistance from my husband for the usual household stuff, although I did mostly rest for a few weeks. The surgery was followed by 3 sessions of radiation to the area and I’ve had no new spots in that location so far.

As for treatment, please do not be too discouraged by the finding of brain mets. Abraxane and many other drugs work well in the body but do not really protect the brain. The blood brain barrier is nature’s way of protecting that organ from potentially damaging substances, some drugs, certain disease, etc. I’m no chemist but my understanding is that many drugs are made up of molecules too big to pass through the BBB, however, since cancer cell are ours own body’s cells, they sneak up and cause trouble.

Here’s are post surgery pic. The scar looks terrible but it healed well and my hair grew back, just takes some time.


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 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 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 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 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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Apr 2, 2021 08:58PM pugzilla101 wrote:

Surgery was a success today. My mom took a while to come around from the anesthesia which caused some temporary concerns as she had a hard time moving her extremities after the surgery. However, after another hour or so that was no longer an issue. She's recovering in the ICU overnight. She's still experiencing some pain in the head area post op, but I'm hoping that improves over time. The doctor claims that she'll be able to get released as soon as tomorrow, but I'm a bit skeptical she'll recover that quickly.

Here's to hoping for a speedy recovery and effective radiation/chemo treatments to follow.

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Apr 3, 2021 03:02PM illimae wrote:

pugzilla, glad she’s recovering ok, thanks for sharing the update.

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 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 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 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Surgery 1/21/2020 Radiation Therapy 2/16/2020 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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Apr 7, 2021 05:34PM pugzilla101 wrote:

So it appears I've spoken too soon in regards to her recovery. According to the surgeon, we were expecting a recovery period of a couple days before she would be released. She moved out of the ICU the day after surgery which is good, but her recovery is progressing very slowly. In fact, she has been having a very difficult time moving around on her own and walking.

Since surgery last Friday, she remains in the hospital and is undergoing physical therapy for 3 hours a day for the next 10-14 days. The physical therapy is focused on her being able to walk, she spent her first session trying to walk with a walker 500 feet.

I'm pretty disturbed by the stark contrast with the surgeon's estimate of a quick recovery compared to how she's actually doing. The surgeon expected some issues with vision out of her left eye after surgery (as the tumor was impacting that area on the right side of her brain). She's still dealing with pain from the operation... but this lengthy physical therapy and extended hospitalization has me concern that something went wrong.


Really wondering if my concern is warranted, or this is kind of recovery path is something others have been through or observed.

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