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Topic: Mom with Stage IV TNBC for the past 3.5 years and going

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Mar 20, 2017 05:18AM

Artemisia wrote:

Hello,

I am new to the forum and wanted to tell you my mom's story and see if other people have any feedback.

My mom was diagnosed Stage IV in October 2013 at age 57, with multiple brain mets and lung mets and paralysis to her left hand and foot. She had whole brain radiation, which worked well with minimal side effects and brought back 99% of the mobility of her hand and foot, and was put on Xeloda. That didn't work so two months later she was put on taxol and carboplatin and these significantly reduced her breast tumor and nearly cleared all of her lung tumors. She was on this combo for about 11 months until she had some progression. Then the doctor put her on a clinical trial at Yale which did not work for her tumors but (surprise, surprise), it worked to correct her vision to the point that she doesn't need to wear contacts anymore.

After this clinical trial failed, the doctor did another biopsy and told her that her cancer may be Her2+; she was put on Herceptin and Perjeta for five months and neither of them worked, so we revised the diagnosis back to triple negative (I think her doctor earns a percentage of the sales from Herceptin). She was then put on a combo of Avastin/Gemzar and her breast tumor is now gone but the cancer has appeared on her spine and adrenal glands. In September of 2016, she started developing back pain but didn't think much of it until January of 2017, when the back pain had moved up her body. She had a bunch of scans done and confirmed that she has progression to her spine (now doing 5 radiation treatments), lungs, and a few brain mets but the breast tumor is not active anymore.

Her quality of life is OK, but being on decadron for the past three weeks and having radiation to her spine has limited her mobility and her mood is low for the time being (she has just come off the decadron too). The doctor now wants to put her on Avastin and some other combination as well as xGeva for the bones.

My question is, are there any ladies here who have had cancer to multiple sites and have lived past five years? I know that everyone is different and that statistics are just that, but I need some hope. Initially when she was diagnosed 3.5 years ago and I was reading online forums about whole brain radiation, the statistics were grim, but it has worked well for her these past 3.5 years. Our other problem is that her doctor focuses more of treating the pain and less on the general treatment. He literally takes like 5 minutes to come up with a treatment plan off the top of his head and even offered to put her on Herceptin again last week, which did not work for her in the past (we refused it).

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Mar 20, 2017 08:26AM Moderators wrote:

Welcome to our community Artemisia. We are sorry for all that your mom is going through- and you naturally as the caregiver, and daughter. There are many treatment options out there for women with metastatic breast cancer, and naturally each person's experience is different based on their personal history (age, tolerance of the medication, side effects, etc). Have you considered getting a second opinion?

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Mar 20, 2017 08:49AM Artemisia wrote:

Yes, I keep thinking that a second opinion might help. Also, has anyone here been on the PARP inhibitors after multiple treatments were discontinued?

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Mar 21, 2017 04:33AM zarovka wrote:

Artemesia - The fundamental problem here, as you suggest, is the doctor. Given the story you lay out, I am not even sure she has been diagnosed properly. PARP inhibitors are a great idea, there are interesting trials ... depending on what kind of cancer she has. Get her to a doctor you trust at a nearby NCI center. It really does not matter which one. Even at an NCI center it may take more than one try to get the right doctor - one that is fighting for your Mom. Try to find someone who specializes in TNBC, as my hunch is that is what she has, mostly.

We can suggest all the ideas you like, but if the doctor has written your mom off, nothing is going to happen.

>Z<

PM me if you would like to join a BCO Stage IV FitBit Community. Dx 12/28/2015, IDC, Left, 4cm, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR-, HER2- Hormonal Therapy 1/16/2016 Femara (letrozole) Targeted Therapy 2/1/2016 Ibrance (palbociclib)
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Mar 21, 2017 04:41PM Cure-ious wrote:

Hi Artemesia, I second the (very poor) opinion on the doc. Also, PARP inhibitors are great but they only work if your mom's cancer cells have a BRCA1 gene mutation, so she would need to be screened for that. Also, after so many treatments for triple negative breast cancer, she should be getting some immunotherapy by now (solo or better in combination)- in what region of the US are you located? I would research nearby clinical trials extensively= is she willing and able to join another trial?

Dx 10/2003, IDC, Stage IIB, ER+/PR+, HER2- Dx 7/2015, Stage IV, metastasized to bone, ER+/PR-, HER2-

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