ER+ Mutated no longer using Estrogen: ESR1 And PIK3CA Mutations

@trivia, I did some poking around on the internet about this. This published research appears to be what you're referring to namely, some estrogen receptor positive (ER+) breast cancers may be resistant to endocrine therapy commonly used (and often successfully) for treatment. The research suggests "dysregulation of the estrogen receptor alpha gene (ESR1 ) contributes to therapeutic resistance and metastatic biology."

- ESR1 alterations and metastasis in estrogen receptor positive breast cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6519472/

Was it suggested that this may be the situation in your case?

Hi Everyone, I'm Stage 4 Breast Cancer with mets in liver. The mets were radiated in August of 2020. I've had the standard chemo, mastectomy, lymph node ressection and radiation on the breast area in 2019.
I wondered if anyone who has the same mutations and if they are taking Faslodex alone? Doesn't ESRI 1 mutation mean that the Estrogen receptor has also mutated? My Oncologist hasn't seen any progression or new spots since the Radiation of the liver lesions, even though there is also the Pik3 mutation which is usually dosed with Picqray. I really don't want chemo if I can help it (which it seems like I am successful so far). So, just wondered about the ESRI 1 mutation mostly.

Hi @trivia, I moved your recent post together with your earlier question about ESR1 mutation. I thought it might be helpful to keep the conversation together and hopefully find others with the same mutation. From what I've read studies are showing that fulvestrant (Faslodex) stimulates ESR1 protein degradation and is superior to aromatase inhibitors in ESR1-mutated ER+ tumors.

@dianamiracle and @ja5747 have also taken or are taking Faslodex. @rraw started this discussion and is also taking Faslodex
- HER2 positive & HER2 negative: I have both at the same time https://connect.mayoclinic.org/discussion/her2-positive-her2-negative/

Trivia, I can certainly understand your hesitation about chemo if you don't have progression at the moment. Does your oncologist suggest chemo to prevent progression or as a future option if progression is detected?

Yes, my oncologist is ok with the Faslodex alone as long as there is no progression. He did recommend chemo (Xeloda) if it comes back or progresses.

Qualifier statement: I am taking RSO, supplements, herbs and good nutritional meals as my part of the treatment as well as good sleep, exercise, keeping weight down (BMI=21) and meditation. All of it! That's my part at stopping progression. I never underestimate my part; its most likely more important than any drug or treatment my oncologist can give me now that I'm Stage 4.

Hello All,
Yes I guess I did start this conversation about being HER2 positive and HER2 negative both at the same time . Yes I have the PIK3CA mutation as well. I am currently taking Faslodex and Herceptin for HER2 + it appears to be working in that the tumors we knew were HER2 + appear to be stable. The HER2- is a bit more stubborn. I have taken a number of things including Piqray and it’s been unsuccessful. We moved to Halavan in mid September. I get PET scan results back on Thursday to see how well it’s working. The CA15-3 (tumor marker) tests did show significant drops for a few months but the end of December started to slowly tick back up..... hence the new PET scan. Here’s another twist one of my tumors is Barc positive..... I am not..... but the tumor is. I am a walking mess but I feel just fine. I have about 2 days of exhaustion following the Halavan infusion but otherwise nothing much to speak of. My bloodwork indicates everything is functioning properly (kidneys, liver etc) My already thin hair has thinned a bit more since I started Halavan but I look good bald🤗😂Thanks for letting me share!

Hi! I just saw your post and understand I am 2 years out from when you had posted information about taking RSO, supplements, herbs and nutritional meals. I was diagnosed with Metastatic Breast Cancer (ER/PR+) HER2- back in 2019. I went on Ibrance, Letrozole and Lupron injection. My cancer disappeared from my PET Scans in 2020, but returned in 2021. I had questioned my doctor about continuing the prescriptions that I was on and she suggested I do. Fast forward, my cancer returned in the same breast it started in and I developed an ESR1 mutation to it. I have been trying to figure out how to stop it ever since. I recently started Ozone Therapy (Irradiation of the blood) and IV Vitamin C therapy (60cc) every 3 weeks.

So my question to you is this, have you found with taking RSO, supplements, herbs, etc., you see a decrease in your ESR1 mutated tumor?

TRIVIA : Could you share w me about the RSO ? I live in Oregon , it is readily available , but no idea how people might use it . TY , PJSFLA

Hi PJSFLA - To answer your question regarding RSO. Rick Simpson Oil (RSO) is a high-concentration cannabis oil that has helped alleviate aches and pains for many medical marijuana patients. The efficacy of RSO lies in its high concentration of potent and medically-beneficial cannabinoids, specifically tetrahydrocannabinol (THC).

It is very syrupy and black. I am not a smoker and take it in a syringe form with a little bit of peanut butter at night prior to going to bed. I had to obtain a medical marijuana card in order for me to buy this at a dispensary. Here are 3 dispensaries in the state of Oregon that I found for you:

Hello,
I am curious , how did you start Ozone and IV Vitamin C therapies? Did your dr prescribed them? Why do you think you need something new/different with the ESR1 mutated tumor?

I'd like to think what worked for you before will work again.