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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Mom with Stage IV TNBC for the past 3.5 years and going

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 11:18AM

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 02:26PM 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?

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Mar 20, 2017 02:49PM 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 10:33AM 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 1/17/2016 Femara (letrozole) Targeted Therapy 2/2/2016 Ibrance (palbociclib)
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Mar 21, 2017 10:41PM 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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Mar 30, 2017 06:38PM Artemisia wrote:

She was on Opdivo for four months but it didn't work.

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Mar 30, 2017 06:40PM Artemisia wrote:

Are there actually Stage IV TNB ladies here that have made it past the five year mark? I bet there are several.

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Mar 31, 2017 02:02AM bottkota wrote:

I was diagnosed stage 4 November 2, 2009. I have been on several different treatments thru the years but since April of 2014, I have been on the parp inhibitor Veliparib, 4 pills twice daily, every day, no breaks. No real side effects except my sleep pattern seems to be all haywire, but I blame a lot of that on my personal life being a mess more than the pills. Anyway, my QOL is pretty good. I finally have more energy to do things around the house and live life. I am 42, carry both BRCA mutations and was first diagnosed stage 2 6 months before my 31st Birthday! Triple neg from the beginning and I need recurrence. 7 1/2 years and still going strong.


Cathi

Dx 11/2009, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Mar 31, 2017 02:46PM Jabid wrote:

Hello,

I am from Fiji and my mother was initially diagnosed with cancer in 2011 and stage 4 cancer in early 2014 with lung mets. Just earlier this week, we found out that she has brain mets with edema because of her severe headaches. She has lost coordination of her right hand and leg.

Let me say this, you are so lucky to me living in a developed country like the U.S versus us living in a third world country like Fiji where we lag behind in terms of medical infrastructure and basic health care.

I sent my mom to India for treatment in 2014 because there was nothing that could be done here in Fiji. Anyway, with the help of her oncologists in India, we have started Dexamethasone 8mg 12 hourly and it seems to help. She has been on oral chemo (cyclophosphamide) 50mg daily for last 3 years.

I would love to hear more from you especially when you have used Dexamethasone. We are new to it and do not know what to expect as side effects.


I would appreciate if you could please private message me.

Wishing your mom good health always.

Take care.

Kind Regards

Jabid

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Apr 8, 2017 11:08PM Artemisia wrote:

Things are not looking very good for my mom. She was admitted to the hospital three days ago. She had her radiation for the spine mets, she has some new brain mets (had done WBR 3.5 years ago and tolerated it very well), has progression in lungs and a bit in adenal glands. She is weak, has difficulty walking long distances (at least she can go to the bathroom alone), and is generally shaky and still on decadron.

Her doctor said they will start a new treatment plan come Monday but they want to stop all treatment for now and focus on the brain. Has anyone had Gamma knife or Cyberknife after WBR? Can she do WBR again? Are there chemotherapy agents that cross the blood brain barrier?

If we are not informed about possible treatment options, the doctors will just throw any treatment that comes to mind.

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Apr 8, 2017 11:09PM Artemisia wrote:

So happy for you Kathi! Your story gives me hope. Have you ever had WBR done?

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