Newly Diagnosed Stage 4 Breast Cancer Patient Seeking Support

Hi Kellee.. sorry to hear about your experience so far. Have you tried targeted therapy like Kisqali? U only had your diagnosis in Feb this year. Do you have pleural effusion? Maybe a second opinion could help?

Sorry you’ve had such a difficult experience. Just wondering if you took AI’s or not.

I’m sorry Kellee. What stage was your initial diagnosis? Did you have symptoms before they found the Mets? Every time a get an ache or pain I wonder. My doctor won’t let me do MRI instead of mammos.

Hi Kellee, I’m sorry you are having to go through this. It may be helpful to go to a specialized cancer hospital for a second opinion. I had to change drs 3 times before I was getting satisfactory results! I was diagnosed initially in October 2020 with hr + her-, stage 2. Mastectomy of left breast . No radiation or chemo… anastrozole 1mg daily. Feb 2024 felt very tired, my oncologist said it might be Lyme disease… told me to go get a blood test!I didn’t have Lyme, but was still exhausted … went to another cancer center for a 2nd opinion … did two cancer antigen tests and my results were crazy high… got a pet scan which showed Mbc , skull, jaw spine, all long bones, pelvis and lungs… they put me on Ibrance, anastrozole, Xgeva which has reduced the size of the lesions significantly , got radiation for femur hip, pelvis for pain. They got the cancer under control! You need to fight for yourself.. question everything! If you are not happy with results get 2nd opinions! Best of luck to you ! Melissa

Hi Janice, I have MBC, it is widespread in my bones and lungs diagnosed Feb 24. My dr has me on Ibrance , anastrozole, and xgeva. My wbc is low, but it has not had any effects on my liver so far.

Hi Melissa, glad to hear your liver hasn’t been affected by the Ibrance. I just had a pet scan and the kisqali faded the cancer nodules on my lung and lymph nodes after 3 months. However, this treatment has affected my liver and now on prednisone. I will be starting Ibrance after I finish prednisone. It sounds like it doesn’t affect the liver as much as kisqali.

Janice, I have not had any problems with the Ibrance. I take it at night before going to bed for the night. There are quite a few options out there. Hopefully the Ibrance will not cause any further liver problems. Best of luck to you along with a few prayers !

Hi Keller, I’m sorry you are going through so much! My stage 4 cancer is in every bone except forearms, hands calves and feet, I just had one of two aneurysms coiled, where they found a mass under the skull and another small aneurysm. My cancer was first diagnosed in 2020, mastectomy of left breast , then Mbc diagnosed in feb 2024. I have changed doctors 4 times since the start of this journey. I am now with memorial Sloan Kettering in New York and am very happy with them. You may want to consider getting a second opinion on the treatments you are receiving if you are questioning your current medical team . Best of luck to you!

Kellee, I can't imagine what you have been through. I hope you have filled in your personal info into this app because it will give you the NCCN guidelines for your diagnosis. My oncologist followed them exactly. I celebrate my 9th year anniversary this week. If your oncologist didn't follow the NCCN Guidelines, I would definitely get a 2nd opinion. Prayers coming for you.

Hello Kellee, I’m so sorry for what you have gone through. 🙏🙏. I cannot help or recommend any ideas for you as I am only 4 months into my diagnose of MbC in my lung and lump nodes. I was on Kisqali but my liver functions are too high and have not been on anything for 1 month except exemastane. I’m having a scan tomorrow to check to make sure I don’t have liver disease. If everything checks out I’m going in Ibrance after my liver functions return to normal. I go to Dana Farber in Boston.

Thank you Melissa for your input🩷

Welcome to this supportive community where many members understand the challenges that come with advanced breast cancer and the physical changes it can bring. The experiences shared here show that advocating for yourself and seeking second opinions when needed is an important part of navigating this journey. Many community members have found strength in connecting with others who truly understand what this path involves, and this space offers a place to share both struggles and hope with people who get it.