MBC What did you experience when 1st line treatment stopped working?

I don’t as yet have as much experience with the treatment process, as I had to change from a new doctor who made fun of me and wouldn’t even look at my swollen foot when I tripped and hurt it. Regarding my breast cancer I had to star from part one again, because when I went to her she turned my problem over to a nurse practitioner [more later].

jbp,
What stage are you now ?

Hello @jpb, like @mom23boys i was diagnosed stage 4 de nova June 2020 at 54 years old. First line of treatment was Kisqali, Anastrozole and X-geva. For 19 months I was was NED (no evidence of disease) but then It all
Started growing again (in my breast, lymph nodes and bones). From there I went on Afinitor and Exemastane but my body didn’t do well on that (had trouble breathing) so had to stop after 6 weeks. Next up was Xeloda and scan after 6 weeks showed it was also not working and the cancer was progressing.

There were a few next step options to try but I then got lucky enough to get into a clinical trial for Dato-Dxd. I have had 6 treatments now, started last November 1, and the cancer is slowly shrinking!!!!

There are many options out there especially for HR+ HER2- MBC diagnosis is very scary but there is a lot to be hopeful about. I am on A breast cancer dragon boat team and another member is also MBC since 2016, on treatment for 4 years and now NED and not any treatment for 3 years. Stay positive, stay hopeful. I know moments can be heartbreaking but work through those moments, it’s ok to feel some grief, then push forward and make plans for your future and tell your body and mind that you plan to be here for a long time!!

Reach out if there is anything I can help with!

Stay strong warrior sister!

I shared this message with my mom on losing hope. She has been asking alot about when she is no longer here - asking friends very deep questions that have her almost in fear and as a her daughter I just stay tough and remind her of things that brighten her spirits. She jokes a lot to hide the pain - but there is very much a concern that no one knows until they are there. I wish I could take her fear away and she says I do by sharing these types of messages. She knows there is a bigger plan - but she is worried about a few things - that I actually emailed a preacher tonight that did my dads service on some questions she has about things. SO hopefully that will bring her peace when the time does come. She is tough and has shown the spirit we women have in us to never stop fighting.

Good morning, I was diagnosed with MBC ER/PR+ and HER2- back in 2019. At that time, it was in my left breast, 2 1/2 of my lymph nodes and 2 areas on my vertebrae. I was considered "low volume" back then, as my CEA-15 tumor markers were only 37. I was immediately put on Ibrance, Letrozole and Lupron injection and was declared NEDS in 2020. I was on the maximum dosage and requested my doctor lower my dosage since I was NEDS, and she refused stating that my body could handle it. Fast forward, 2021, it came back in my left breast as a mutation (ESR1 & Mtor). My doctor was more concerned with the ESR1 mutation and suggested I have my ovaries removed, which I did, but also switch my hormonal blockers to Faslodex. Now mind you, an ESR1 mutation develops when the cells become resistant to hormonal blockers. Why put me on another one when I have developed a mutation is beyond me, but I was put on Faslodex. Let me preface that I was taken off of Ibrance, Letrozole, Exemestane and the Lupron Injection. During the time on Faslodex, I had severe pain in my left hip and had 3 lesions there. Ended up with a complete hip replacement. Then it traveled to 3 areas on my back and 3 lesions in my liver. So now I am on Xeloda, a targeted chemo pill. I am not a fan of chemo, but so far, I'm doing okay on it. Let me also add that I do so much with alternative treatments as well to try to keep the volume low.

Hi leann66, your story is so inspirational. I was diagnosed with ER/PR+ HER2- MBC in 2019 at the age of 52. Its crazy how cancer figures out treatments and become resistant to it, as I have experienced it myself. After 3 1/2 years of treatments that at one point put me in NEDS, the tumors managed to become resistant. I am now on Xeloda and will begin my 3rd cycle this coming Friday. So in reading your story, you mention a clinical trial for Daxo-Dxd. What sort of treatment is that? Is it chemo? An infusion? How are you tolerating it?

Hello! The full name of the medication is:

Hope that link works!

It is an infusion every 3 weeks and to get in this trial I have to have had previous lines of treatment that stopped working (which I did). It has been showing good results from what I hear.

My own results are slow but trending positively. Had 8 treatments and cancer has gone/shrunk in breast and lymph nodes, unchanged still in spine and Rob bit that lay take more time - it is not growing though!!!

Let me know if you need more info.

You can contact me directly if you want to chat:
Lclaridge-Marcotte@hotmail.com

Hi Leann,

Thank you so much for sharing your information! I will look into this as a back-up if Xeloda does not work for me.

I am so sorry about your mother. There is and never will be anyone like our mothers. I pray that God touches her heart and grants her (and you) peace of mind.

Sorry that is the right drug but the wrong link, they are also using it for lung cancer. I’ll find the right link and post it!! The breast cancer trial is called Tropion 1