Metastatic breast cancer: Anyone else?

In Canada the program is called My Kisqali Companion, phone number is 1-877-516-5353. Christine.Levasseur@novartis.com
Maybe they can point you to a contact in the US for the program!! 🤞🏻🤞🏻

thank you i wiil try

my sister has stage 4 breast cancer, invasive ductal carcinoma with spread to spine. she is 63......... she got stage 2 in FEBRUARY 2019 and took radiation & tamoxifen. in january this year 2022, she started real bad pain in back & hip. she let it go for months. finally she got MRI and PET SCAN july 29 and she found out the above horrible information. her ONC switched her to Letrozole and she is going to start taking Ibrance. and I believe she is going to get Xgeva shot once monthly .. if she bends over, her back hurts, then she get feeling better and then she will forget and bend over again and its just really hard to be in this position. she had MRI 's today of low back & neck and so they will see if she has improved any .........

Metastatic Breast Cancer Recurrence
Pet Scanned
Biopsy shows HER2+

Does anyone know what to expect?

Oh @ampeltekian, I'm so sorry to hear that your fear became true and that your recent PET scan and biopsy confirmed that you hav metastatic breast cancer. You're not alone.

I moved your message to this existing discussion:
- Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

I did this so you can easily connect with other members living with metastatic breast cancer like @mssewest @hockeymom25 @boathouse @karenpow @leeann66 @eku @millard @boogz @tessspike @auntieoakley and others.

@ampeltekian, did you talk with your team about next steps or treatment yet? Where has the cancer spread?

This is my sister im speaking of and not myself. However I am trying to learn from others n educate her. She isn't being proactive in reading about cancer. Im trying to teach her. Im a health nut n she is not. She is taking letrozole n Ibrance. Metastasis to the spine...lower back n upper neck.. she has scans again in 3 months. Thanks...

I HAVE READ ALL OF MY FELLOW COMMENTS ON THEIR JOURNEY WITH MBC.
IF NOTHING ELSE, I TAKE COMFORT IN THAT I AM NOT ALONE OUT THERE WITH MY MBC.
I AM IN MY FIRST WEEK WITH THE CHEMO DRUGS VERZRNIO AND EXEMESTANE.
MY MBC HAS SETTLED IN MY LUNGS, AND I WILL HAVE A PETSCAN IN THREE MONTHS TO SEE IF THE CHEMO DRUG IS WORKING.
I ALSO HAVE THIS RASH ON MY LEGS, WHICH STARTED BEFORE ANY CANCER DRUGS BEGAN.
I NOW HAVE TO TAKE PREDNISONE FOR TWO WEEKS TO STOP THE RASH.
I AM SCARED BECAUSE EVERYTHING HAS SIDE EFFECTS, AND THIS DRUG CAN CAUSE A LOT OF SIDE EFFECTS, THE SAME AS MY CANCER DRUGS DO.

I’m so sorry you are having to deal with this. I, too, have MBC. Diagnosed with invasive lobular breast cancer last April, I found that it had metastasized in my skin which is not treatable. Like you, I’m on exemestane and trying to shrink all the tumors enough to be able to get clear margins for the mastectomy. While there is no cure for breast cancer in the skin, I continue to pray that it doesn’t metastasize anywhere else. I will always have cancer. My heart goes out to you on so many levels. We must do everything we can to get to the other side of cancer. Please know you have thousands of supporters.

Welcome, @mjwhearts22. It is my understanding that metastasis to the skin can sometimes be treated, but not cured. Have you had any treatments like electrochemotherapy, special dressings or even antibiotics? These may be options depending on a variety of factors. Do you have pain?

Thank you. None of that has been mentioned yet but my sense is that my docs want my mastectomy (double) to be done before we try other modalities for the skin. I’m still several months away from surgery. Another MRI next week so we’ll see😏