What line of treatment are you on and how long did it work?

Processing a recurrence after being NED is incredibly challenging, and it's understandable to be working through those complex emotions while staying focused on the path ahead. Many community members have navigated multiple lines of treatment, and hearing about their experiences with different therapies and timelines can provide valuable perspective during this transition. The hope is that others will share their treatment journeys to help build a clearer picture of what various options might look like and how long different approaches have worked for them.

I have been on my journey for 9 1/2years. 2016 I was diagnosed with er positive metastatic stage lV. 5 months chemo, mastectomy left side radiation. Placed on an endocrine therapy. Then 4 1/2 years later I had a grapefruit size tumor in my sacrum. Radiation therapy and was placed on ibrance and Letrozole. After 2 1/2 I was NED so I was able to go off ibrance. A year later a small tumor in L-4. Spot radiation. Still on Letrozole. Then I was NED. W/PET scan. 1 1/2 later last August small tumor on my sits bone. Spot radiation and still on Letrozole. I am now NED again. I have a deep faith and rely on prayer a lot. This journey is a roller coaster. PET scans every 3 months and stay on Letrozole. I have not mutated. I also have CTDNA and no tumor markers in my blood. That’s why I do not have to go back on ibrance. Your oncologist will help you navigate your next step. But always ask questions, research and use outcomes it can really help you. Always know this is a safe place to ask questions and we are all going through the same thing. Prayers to you and your journey.

Hi what do u mean by line? I never heard that before. Mary❤️

New medicines that are prescribed each time based on findings and how you are responding to current treatment. First line is what is initially prescribed. You are on first line until you are put on a new treatment plan.

Hi I never heard that before , thank you I learned something new. I was put on Letrozole way back 13 yrs. ago. It’s an estrogen inhibitior. Boy was I miserable. Hot flashes were the worse! My breast cancer is not genetic. I took too much estrogen the highest that they have to avoid menopause. I had genetic testing done everything came up negative twice. My Dr. looked at my tumors and found the braca gene in one. But that test too came back negative. Anyway I hope you’re feeling and please keep in touch! Mary❤️

I was treated all 2025 for TNBC, right breast. 14 rds chemo, surgery first on right breast with reconstruction. Decided to get mastectomy on unaffected left breast for risk management. Had tissue expander implanted with final surgery in Feb. early Dec developed rash on left breast. Waited a few fees to get seen due to holidays, house sale and getting ready for trip to Antarctica. Biopsy was 12/19. found out 12/29 that it was cancer. ER+ her2- Have been in a full tailspin. Started on letrozole and kisqali for 3 weeks. Did nothing. Rash spreading. Got back the gene sequence tests, both tumor and blood biopsy. Found 2 gene mutations. Given choice of clinical trial (would take too long to get onboarded) so switched to fulvestrant, inavoslib and ibrance 1 week ago and seeing a response! Finally! Flattering of tumor area, less red. But purple, blistered and painful. I feel like there is a war going on in my chest with the invaders being defeated!

Yes Mary will do. I too have too much estrogen so I am on Kisquali and Fasodlex. Hang in there. There are a lot of treatments for us !

Leslie D do you mind telling me what mutations you have? I have pik3.

Hi I had the genetic testing done twice. Both times they came up negative. So my cancer is not genetic. Even though I do have it in my family. The braca genes were also tested and they came up negative. My Dr. looked at the tumors and found braca 1. My cancer comes from all the estrogen I took when I was going menopause. I didn’t want to deal with the hot flashes. How are u doing? Hope all is well. Mary❤️

"Leslie D do you mind telling me what mutations you have? " Nancy- I have pik3 and akt3

Leslie D- I have been on the same treatment as you ( ibrance, fluvestrant, itovebi)since January 25. CT scan 2 weeks ago showed progression. I will see MO on Wednesday to see what next steps are. HR+ HER2- ILC. I wish all the best for you. This works for many people, I guess just not me.

Leslie D- I too have been tested with the mutation pik3ca and have been on Truqap and fulvestrant a year

Hi it’s Mary I have never heard of pik3 or any of the levels that they’re talking about. Please tell me. ❤️

Mary Z-PIK3CA is a gene that gives your cells instructions for how to make a protein called p110 alpha. This protein is part of an enzyme called PI3K. PI3K helps control how your cells grow, divide and survive.

Sometimes, changes (variants) in the PIK3CA gene can make the PI3K enzyme too active. When this happens, cells may grow or divide too much. This can lead to certain cancers and overgrowth conditions.

Hi I have never heard it before. Very interesting! Ty!