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

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

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.

So sorry to hear these. Lots of hugs and love to you! If you can, try to seek alternative treatments as well, engergy healing, nutrition, Chinese herb tea…

Emotionally I have been all over the place. I recently started seeing a counselor who works for the Cleveland Clinic oncology department and have found that helpful. I have trouble talking about it with my family because it just makes me cry, so it is a relief to get it out with someone who I'm not upsetting. I've also heard from some individuals who have been in treatment for stage 4 for several years and that is helpful, Tomorrow is my appointment so at this point I'm just hoping for the best

Hi there, so sorry to hear what you are dealing with! I am in the same boat as @mom23boys , diagnosed stage 4 de nova June 2020 at 54. First line of treatment stopped working after 19 months, the next two didn’t work but as of November 1 I am in a trial with a new med that so far has shrunk the lesions. Aside from 2-3 days feeling lousy the remaining 4 weeks each month I am living my life (almost) normally. Don’t lose hope there are many, many treatment options and new ones coming all the time. Also I agree with whoever said don’t let your tumour markers going up scare you, mine were normal when diagnosed stage 4 and went up later in treatment for an unknown reason and are now normal again. Stay strong, stay hopeful and know that you are not alone in the battle!!!

My cancer team just found new mets after 17 successful months on faslodex and verzenio. I’m in the process of starting a new treatment plan. Would you mind sharing what is working for you?
thanks!

Hello, so sorry to hear about the new Mets! I am
Currently in a trial for Dato-Dxd. The study is called Tropion 01 and is in the final phases before getting FDA approval. I started Nov 1, 2022 and all Mets are no longer seen on scans except a few lymph node’s under my are that have shrunk but still there. Prior to this, I was on Kisqali for 19 months then it stopped working, then Affinitor and Exemastane but I had trouble breathing so has to stop, then Xeloda d’or 6 months which didn’t work. Tell your doctor about Dato-Dxd and jace them look at availability to join a trial or perhaps it is soon available to all. Good luck will be thinking of you!!!